My Journey to Joy

My Dream where Everything was Beautiful

2011-12-27T12:43:00.000-08:00

This morning I had a chance to follow a dream all the way from beginning to end. Usually I wake up because the cat wants out at 6 am, or the dog gets up at 7:45, but now my husband is home because of Christmas vacation, so he takes care of the dog.

In my dream I was a young woman in a big city. I had just found a beautiful book in a bookstore. It had wood carved covers with an intricate design. The front cover had the sun in the center with sunbeams stretching out toward the corners and the spaces between were filled with designs. The back was carved, also. The wood was light colored, like maple, but it had no finish on it. In my dream it had been a book done by Picasso while he was a student, but the artwork bore no resemblance to anything I have ever seen by Picasso.

When I opened the book, I found it filled with work. I was surprised as I turned page after page. I had expected it to open, but there was not just one set of pictures, but many. How could so many pictures fit into a narrow book? I remember thinking they did not look anything like Picasso's Rose and Blue period, and there were no prints of bulls. I do remember seeing a painting of a man in blue and red clothing like Leonardo DaVinci might have painted. It was in an oval matte.
There were many other beautiful works in the book. In this part of the dream and all the way through, I kept being surprised by what I found. It was always better than what I thought it would be.

Next, I was in my thirties or forties , and I had opened a museum to house this beautiful book.
Throughout the museum I had beautiful things of all different types. There were ceramics and paintings and jewelery. Also, along side the museum pieces, I had shelves of items that patrons could buy. Where there were ceramics, I had pretty ceramics that could be bought and taken home. That way after seeing something beautiful, people could take some beauty home with them and not feel bereft after leaving the museum.

In the next scene I was walking through the museum, and entered a large high-ceilinged room where a performance was about to begin. Switchfoot was setting up to perform! My daughter has liked Switchfoot for several years, so this was amusing. I was going to watch the performance from my own chamber on the next level. I had a room that overlooked the stage, but it was deeper than a balcony. I have had trouble walking lately, so I able to recline on a chaise lounge and see the stage.

Having established that I had a private room in the museum, in the next scene, I had my family living there. It was morning, and we were all getting dressed in one of the museum's rooms. The children were cold, and we were putting on our clothing in a warmer room. There were four or five children. I didn't see them all. I just watched a boy and girl about 8 to 11 years old, pulling on their jackets over shirts or blouses. They were dressed in clothes that looked like they worked in the museum in costume from 200 years ago. My husband was getting dressed like he was going fishing. I think he had hip waders. That was funny, but it seemed like he was going out to do something he enjoyed.

In the last scene, I was getting closer to reality. I was waking up. I often do not get to this point in dreams. My real daughter, Kay, and I were shopping someplace beautiful. I think it was on our anticipated trip to Europe. My daughter was looking at items in a display and talking to a beautiful, blond sales associate the same age as she is. The items for sale were charms made from natural materials like coral. These charms were for sale along with practical items to attach them to, like key chains and nail clippers.

I remember that the metal everything was made of was like silver with a whitened finish rubbed over it. I have a necklace like that from 30 years ago. At the end of the dream Kay was debating if she should just buy the charm, without the item to attach it to, and she would attach it to a bracelet she had at home. I think the point of this part of the dream was to find beauty or to attach beauty to everyday items.

That is a value I learned about in an African Art class. Commonplace items like wrought iron tools used inside the house would be embellished with figures in the handles. A comb that I have has a woman's figure in the handle.

The theme of the dream is Beauty. I believe that our response to Beauty is actually a response to God or an anticipation of heaven. The book at the beginning of the dream is probably God's word. I suppose the museum is Heaven. I had everything there: Beauty, Music, Family, and Fun. I would like to hear your response to the dream.

Christmas Time

2011-12-19T11:35:00.000-08:00

At Christmas time I hear the stories of others who are sometimes sad or disappointed with how their holiday is going. I never though I would say this, but I am becoming more pleased that we always had a low-key Christmas when I was a child.

We were a lower middle class family. We were not poor. My father always had a job as an electronics technician, and my parents were buying the house we lived in, and we had a car. We had a TV, but it did not always work.

For Christmas we would get a Christmas tree from the lot in the grocery store parking lot. It always seemed to be 4.5 feet tall. I would want a taller tree, but my parents said the smaller one was fine. It was always taller than I was. We had lights and ornaments and tinsel to put on the tree. I don't remember my parents ever going out to buy newer or better decorations; they didn't replace anything unless it broke. We had bubble lights that lasted many years.

We would open our presents on Christmas morning. There was just my parents and my sisters; no need to start opening gifts on Christmas Eve. We would each get about 2 presents. I remember my older sister and I getting baby dolls one year. I'm not sure if our baby sister was born yet.

Then the next year Aunt Dottie made beautiful clothes for our baby dolls. That was a total surprise, and we were very happy. It was unusual to get a gift from someone besides our parents. Another year, Aunt Jenny got us big baby dolls. I thought that was great! Now I had a big sister for my smaller doll. I named the bigger doll Carolyn and the little doll was Susie. I had a few other dolls, but I especially remember getting those two dolls at Christmas.

We would eat something nice at Christmas, maybe a chicken dinner. We probably had a big Thanksgiving dinner with a turkey, so Christmas was not so much about the food, as it was about being together and giving gifts. I remember getting jigsaw puzzles as occasional gifts, and sitting there with my Dad and my sister at our little child-sized table working on a puzzle for hours after the presents were opened.

We did not go to see other relatives on Christmas. I think my father just had one day off from work, and our family did not think it was necessary to make him drive for 3 hours so we could visit grandma or cousins. Christmas was a pleasant day spent at home enjoying each others company.

Of course, we all knew that Christmas was the day we celebrated that Jesus came here to earth to be with us. We would talk about it and put out the "manger scene" in the living room. We were at Sunday School and church every Sunday. I don't recall ever going to church on Christmas or Christmas Eve. We were at a Baptist church in the San Fernando Valley in California, and I don't even know if they had Christmas Eve services about 1960.

Take Care of Yourself

2011-12-17T14:41:00.000-08:00

What I have learned in November and December:

If a carcinoid patient feels like she is doing too much and she ought to rest, then she should do that. No matter that friends will be disappointed that she will not be at their party, stop cooking the cocktail meatballs and go lie down. The same thing goes for Thanksgiving. The other adults can chip in and finish preparing the meal, if necessary. Go lie down.

If the patient does not do that, she risks having classic carcinoid diarrhea and spending four days in bed--or in the bathroom.

In general, I have been very weak for nearly 2 weeks. I had a wonderful 8 days just before that. I did not take my cane with me, and I was able to go Christmas shopping. I also made a big trip to Target to get food and household supplies. It's a good thing I did that because on December 16 I began getting weak.

I am afraid to go anywhere that I will have to cross a parking lot. I had to walk over 200 feet last week to get my hair cut, and had to use my cane to hold me up and propel me forward.

In 2 days I have an appointment with my internist to get a prescription for a walker and to set up a handicapped parking space. I will see my oncologist on January 4. I have been giving myself rescue shots of 100 micrograms of Octreotide 1-3 times per day. I have been having the heat from carcinoid. Also, I have been alternating between diarrhea and constipation. I think all the shots may be causing constipation.

I have an echocardiogram scheduled on December 29, so we can see if there is any heart valve damage.

Welcome to This Heart of Mine

2011-11-11T14:55:00.000-08:00

Hi,

This is a song I discovered a couple years ago when I heard Shaun Groves perform at a Christian Music Festival in Del Mar, California. The festival is called Spirit West Coast. It is the only song I have ever found that is similar to what I experienced when I gave my whole heart over to God in 2007.

I had accepted Christ as my Savior, been filled with the Holy Spirit, and had been baptised in the Holy Spirit years ago. However, I had never let go of wanting to control my own life, instead of handing it over to God. One day I finally let go of wanting to hang on to my health, my daughter, and my Dad. I had been afraid that God would take those things away from me, if I let Him have them. My Dad and my daughter are still here. My health is worse, but I benefit from being in God's will for my life, rather than trying to figure out everything for myself.

This song by Shaun Groves speaks about letting God into all the corners and closets of our life. It can be found on UTube with Shaun singing the lyrics.

Welcome Home
By Shaun Groves c 2001 New Spring Publishing Inc./ASCAP
　
Take me, make me
All You want me to be
That’s all I’m asking, all I’m asking.

Welcome to this heart of mine
I’ve buried under prideful vines
Grown to hide the mess I’ve made
Inside of me. Come decorate, Lord.
Open up the creaking door
And walk upon the dusty floor
Scrape away the guilty stains
Until no sin or shame remain.
Spread your love upon the walls
And occupy the empty halls
Until the man I am has faded.
No more doors are barricaded.

Chorus: Come inside this heart of mine
It’s not my own. Make it home.
Come and take this heart and make it all Your own
Welcome home.

Take a seat, pull up a chair.
Forgive me for the disrepair
And the souvenirs from floor to ceiling
Gathered in my search for meaning.
Ev’ry closet’s filled with clutter
Messes yet to be discovered.
I’m overwhelmed, I understand
I can’t make this place all that You can.
I took the space you placed in me
Redecorated in shades of greed
And I made sure every door stayed locked
Every window blocked and still You knocked.

Take me, make me
All you want me to be
That’s all I’m asking,
All I’m asking.

PRRT Peptide Receptor Radionuclide Therapy

2011-11-06T19:28:00.000-08:00

PRRT is a therapy to treat neuroendocrine tumors that has been used for several years (possibly a decade) in Europe. It uses radioactive elements attached to Octreotide to shrink the tumors. This treatment works because most neuroendocrine tumors have receptors that bind the naturally occurring chemical somatostatin. Octreotide is simply a synthetic version of somatostatin, so Octreotide goes straight to NETs just like somatostatin would.

Somatostatin is a naturally calming compound. When it goes to the cell membrane of a carcinoid cell, it attaches to its receptors on the cell membrane. Then it makes the cell slow down and not produce so much of the neurotransmittors, peptides, or hormones that the tumor usually makes. Therefore, somatostatin is part of a feedback mechanism that tells cells that their secretions are not necessary, so the cells decrease making the secretions that incidentally make carcinoid patients sick.
Since it is a somatostatin analog, Octreotide goes naturally to carcinoid cells, and when a radionuclide is attached to Octreotide then the radiation affects the carcinoid tumor. There are three different radionuclides that have been used in PRRT: Indium-111, Yttrium-90, and Lutetium-177. One of the reasons to use one of the radionuclides versus another is that they have different ranges of penetration.

The doctors use the radionuclide that will penetrate the tumor, but not destroy normal tissue that is around the tumor. Indium-111 has the shortest range of penetration; Lutetium-177 has a range of 2mm; and Yttrium-90 has a range of 12mm. There is more information about PRRT on the Caring for Carcinoid Foundation website at www.caringforcarcinoid.org/PRRT.

The use of Gallium-68 DOTATE PET/CT and PRRT is so new that scientists just had their first conference June 23-26, 2011 at Bad Berka, Germany. Patients are considered for PRRT if their scans show an inoperable tumor(s) that can be measured on the scans, or if their symptoms are not well managed by Sandostatin or Octreotide therapy. This website contains information for patients who want to have PRRT at Bad Berka, Germany: http://www.prrtinfo.org/.

PRRT requires a series of treatments. Reading the accounts of patients (on Cancer Compass) who went to Rotterdam for PRRT reported that they would go for one week at a time, and stay at a local hotel. The treatment would take place at a medical center to which they returned several days in a row. The patients would have to stay over the weekend to make sure they were well enough to travel, then fly home on Monday. A couple years ago people were writing that they would return home for a couple months before returning for treatments two through four. Results were usually very good, with tumors shrinking and symptoms being reduced.

However, I have learned this year that PRRT can have side effects that include leukemia and bone marrow toxicity. The leukemia was written as an effect that can show up later in life, but a woman suffering from bone marrow toxicity had it happen immediately after her PRRT treatment. Her bone marrow was not making the proper amount of platelets and red blood cells, but she was being treated for the condition and was recovering. This just reminds us that every treatment has side effects, so we need to know what they are and how to fight them.

There isn't much data in the USA, yet, on PRRT. However, this weekend (11-11-11) there is a conference at MD Anderson Medical Center in Houston, Texas, under the leadership of a Dr. Lao, about the progress they have made on doing PRRT in this country. Possibly, next week I can report on a date for PRRT to be available to us without a flight across the ocean.

Update: Well, there is no date for PRRT in the US. There are still hoops for the doctors and universities to jump through before the therapy is available in the USA. If you would like to see a synopsis of what happened at the conference at MD Anderson Medical Center, see this blog www.lucysnoidblog.blogspot.com . Lucy was at the conference and she has a great account of how PRRT works and why it is not available here.

Praying for the best possible result,
Sharon

What's Happening in This Blog

2011-10-26T12:49:00.000-07:00

I enjoy looking at the statistics for the blog to see what people are reading, and what countries they are from. The USA is the leading county most weeks, but sometimes I will have had several readers from Russia, Germany or Romania, so those countries will have the most views on certain days. I always have some viewers from Canada, but not very often from the UK this year. These are not all the countries, but they include Slovenia, Hungary, Macedonia, India, Brazil, Mexico, Italy Australia, Austria, and China.

Some of you look at the blog right away after I write something new, and I try to see where you are. Sometimes those people are in Russia, Germany or the USA. Thank you for your loyalty. The three followers on "Journey to Joy" are my cousin, Debbi, and my sisters. Thank you ladies for your love.

What are people reading? The most commonly read post is the one about Welchol from 2010. Last year and earlier this year, the most common post was the one about "What happens during an Octreoscan?" I think there are more doctors talking about Welchol as a way to combat diarrhea, so patients go online to find out information. Some patients have concerns about Welchol; they ask if it affects their cognitive skills, and if if it affects their heart rate, etc.

I have not had any ill effects that I can put down as being caused by Welchol. At the time I was taking it every day in November 2010, I was in desperate need of stopping diarrhea, so I didn't notice side effects. Now I use Welchol once or twice a week, and don't notice any problems. It does seem to work one hour after I take it, and usually stops all action for 24-30 hours. Once recently, it only held for 10 hours, but that was long enough for me to do what I needed to do that day.

Lately, I have joined the email list for ACOR carcinoid. It's going to help me get more information about other types of scans and treatments. There are not too many new things around, but Vanderbilt Neuroendocrine Center in Nashville, Tennessee has the new scan: 68-Gallium PET/CT. It was the first US facility to get FDA approval to use 68-Gallium to diagnose neuroendocrine tumors. The Gallium scan is also at the University of Iowa.

Next week I am going to be doing more research on the Gallium scan and on PRRT. PRRT is the Peptide Receptor Radionuclide Therapy that is not FDA approved yet. It has been in Europe for a decade. People write about going to Rotterdam or Bad Berka for treatment and getting much better. It has been tested in Houston, Texas for about 2 years. Vanderbilt wants to add it to their Neuroendocrine Center. I am holding on waiting for these procedures to be approved, and hoping they will be approved by time I need them. I am not there yet, but I trust the PRRT will be in the US in two more years. Since I have the tiny tumors that do not show up in Octreoscans, in one more year, I may be ready to go wherever there is a 68-Gallium scan available. Particularly, if my symptoms keep increasing, and no one has seen my tumor since November 2008. Four years would be a long time to go without knowing where the enemy is, and how many of them there are.

The scans are not yet available to the public at Vanderbilt University or Iowa State. It has to do with being approved by the FDA and figuring out costs. During the experimental stage, the expense of doing the scan is paid for by the state or the entity that is paying for the research.

Update 11-14-11 on Gallium-68 Availability:The FDA has 100% approved the Ga 68 scan at both sites, but they would have to give it away. The universities hope the application to the FDA for "cost recovery" will be in place soon, but it is doubtful that will happen soon because of the money involved. When Dr. Woltering asked for cost recovery for treating 135 patients with PRRT at LSU the FDA never allowed it. This is a major problem for individuals trying to do drug development in the USA.

Also, there is a limit to what tumors the Gallium scan can detect. Patients from Australia and Europe are finding that the new scans still don't detect the tumors that are the size of a match head or a pinhead. The smallest tumor a Gallium-68 scan can show is 3mm to 5mm. So my tumors may not show up on those scans, anyway. It doesn't sound like I need to plan a trip across the country any time soon.

So it looks like sometime in 2012 we may get the 68-Gallium PET/CT. I know there are people sicker than I am who need the scans done first. Some people don't know where their primary tumor was; that can impact the type of treatment they get. I hope I don't find out that I have tiny tumors scattered like salt across my liver. That last statement doesn't sound like great faith. Hmm, I think I need some scripture here.

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving make your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your minds and your hearts in Christ Jesus...And my God shall supply all your needs according to His riches in glory in Jesus Christ. Now to our God and Father be glory forever and ever. Amen. Philippians 4: 6-7, 19-20.

This is Different

2011-10-16T20:28:00.000-07:00

I returned to having the Octreotide LAR two days ago, having finished my Octreoscan. I got a 40mg injection, which is the higher dose of Octreotide that I have gotten since July 27.

For the last two nights I have fallen asleep suddenly with my clothes on, face unwashed and teeth unbrushed. Friday night I slept about 10 hours from 11 until 9. Then Saturday night I slept from 7:30 until 6:15.

I don't know what my tumor is dumping into my bloodstream, but I would sure like to know. This morning I just wanted to lie down and let my eyes roll back into my head. However, I knew I would be better with prayer, so I went to church.

I walked into church leaning on my cane and moving my feet about 10 inches at a time. Luckily, I get to park right at the front door because I bring two 80-year-old women to church. I made it to my seat and back out again. I did get some help getting to my chair.

The stuff that carcinoid does is so random. This morning I was much sicker than the 82-year-old. Then about 4:00 pm I went outside and gardened for 40 minutes. I had to move very carefully, but I wanted to do something to help my daffodils bloom. Then about 9:20 tonight, I could feel the darkness closing in (so to speak). Since 7:00 pm I have been in my nightgown so I could sleep in nightclothes for the first time in 3 days.

This morning I wore my Carcinoid Awareness baseball shirt to church because I felt so bad. I did that on purpose to raise some awareness, but almost no one looks at the shirt. I guess they don't want to look at my chest. At least I pointed it out to three people who asked what was wrong. If I've got to die of this, I'll be one d*** angry dead lady if I can't get at least 100 people to know what it is.

www.zazzle.com is the place to get shirts and caps printed for most any cause. They offer several things for carcinoid. I got 2 styles of shirts, and a little tote bag. The tote bag is not really strong enough to hold a Bible, but it can hold something smaller.

Scans are Done

2011-09-27T22:27:00.000-07:00

Hi,

"You know the Lord's got his hand on you." my friend Raquel, after finding out I've had a tumor in my liver for three years.

I have been through a new round of Octreoscans in the last week. In two days I get the results. This time the Nuclear Medicine Dept. used a new Gamma Camera that is in the new Douglas Hospital at UCI Medical Center in Orange, California. The staff is very pleased with the quality of the images produced by the camera, and hoped it would point out my tiny carcinoid tumors.

Since my symptoms have doubled in the last few months, I hope the tumors are more visible now. It would be good to know where they are located in my liver, rather than just assuming that they remain there. If I could see the tumors are concentrated in a spot on the top of my liver, I would relax, instead of wondering if they have spread out far and wide.

9/29/2011 Today I saw my surgeon about the results of the Octreoscan. The scan was the same as the last three; there is no evidence of any abnormal absorption of the radioactive Octreotide. In other words, the radiologist cannot tell where the tumor(s) is located. It's still very small, so it doesn't absorb enough of the radioactive chemical to be seen. The Octreotide in my regular medication makes the tumor(s) shrink, and then they can't be seen in the scans. I asked the surgeon about the tumors spreading while unseen. He assured me that if they were spreading, we could see them. So, I guess I shouldn't complain.

I did have a higher Chromagranin A level in my blood on the day the scans were done. For scanning, I have to go off of my daily shots of Octreotide (200mcg 3x daily). I stopped the shots Sunday night and had to stay off of them until the scans finished Friday afternoon. On Monday, I was incredibly sleepy all day. I woke up because our dog wanted to eat, but couldn't stay up, so I stayed in bed until noon, sleeping much of the time. I was sleepy and suffering from "brain fog" in the morning all week. About one o'clock in the afternoon it gets better, but I'm still sleepy a week later.

Therefore, while I was on campus waiting for the nuclear medicine scan to be done, I called my oncologist's nurse. She got me a lab slip for Chromogranin A, and I had my blood drawn. It was 107 on a scale that has the high level beginning at 95. The level in August was 67, and Sept.was 107. Being on a regular dose of Octreotide Acetate, definitely works for me.

I pray the you all will feel better today. Some relief from your symptoms courtesy of your Heavenly Father.

God bless you,
Sharon

Current Chromogranin A Numbers

2011-09-08T11:29:00.000-07:00

Hi,

My oncologist's nurse mailed me the results from my CgA check on 8/24/2011. The test was done after I had already eaten breakfast, but my blood glucose was only 91, so it wasn't very much breakfast.

Chromogranin A result 67.
Reference range: 0 to 95 ng.mL
Method: Cisboi Chromoa(TM)EIA

So that was a normal number that is believable.

The results from 7/28/2011. Also done after eating breakfast.

Chromogranin A result 96.
This was done the day after I had gotten my first injection of 40mg of Octreotide. The CgA was high, but I think it was higher before the injection. It was a time when I had feelings of intense heat in my back. Now I am not as hot, but I still heat up and perspire easily.

It's curious to me that last year I began having symptoms from Carcinoid that involved lots of diarrhea from about August 25-November 5. Then I had a nice break and was doing great at my birthday in January. Then since May 1, I have been more and more dizzy. It is more frequent and bothersome than just a month ago, and I keep forgetting to mention it. In May I began to get the really hot sweats. I have diarrhea about once a week. So the symptoms occur in cycles. Curious.

Best regards,
Sharon

The Voice of Truth by Casting Crowns

2011-08-30T14:53:00.000-07:00

There is inspiration in music to help us keep going.

This is the middle part of the song "Voice of Truth" lyrics and music by Mark Hall and Steven Curtis Chapman. It was recorded by Casting Crowns. It is based on 2 Corinthians 12:7-10 and 1 Corinthians 1:20-24.

"Oh what I would do to have
The kind of strength it takes to stand before a giant
With just a sling and a stone
Surrounded by the sound of a thousand warriors
Shaking in their armor
Wishing they'd have had the strength to stand

But the giant's calling out my name and he laughs at me
Reminding me of all the times before I've tried before and failed.
The giant keeps on telling me
Time and time again, 'Boy you'll never win!'
'You'll never win!'

But the stone was just the right size
To put the giant on the ground
And the waves they don't seem so high
On the top of them lookin' down
I will soar with the wings of eagles
When I stop and listen to the sound of Jesus
Singing over me.

I will choose to listen and believe the voice of truth."

I had not listened to this cd [ Casting Crowns 2003] for months, but it spoke to me this afternoon, especially the lines that say the giant laughs at me.

Then I am reminded in the chorus, " But the voice of truth tells me a different story
The voice of truth says, 'Do not be afraid!'
And the voice of truth says, 'This is for my glory!'
Out of all the voices calling out to me,
I will choose to listen and believe the voice of truth."

May God richly bless you,
Sharon

New Octreoscan Coming and Chromogranin A Changes

2011-08-24T14:52:00.000-07:00

Hello,

Just wanted to make a health note here because I learned something when I saw my oncologist at UC Irvine Medical Center today. A month ago I had gone in to see the surgeon who did the resection of my duodenum and removed the original tumors. I had not seen him for almost two years! It didn't seem that long.

I used to go to see the surgeon after I had an Octreoscan done. Last year I got to feeling MUCH better in November after the Octreoscan was done, so I never got over to the surgeon. However, now I have not felt very well since May, so I wanted to get this doctor's opinion. I told him about the increased heat and flushing of my face and back, plus the earlier diarrhea, and he decided I should have another Octreoscan. Plus, he wanted an Chromogranin A done that day in the lab at the Cancer Center.

Now that is where it gets interesting. As the surgeon suggested, I had the Chromogranin A test in the lab at UC Irvine in Orange, California. I used to do that, but for a year I have been having my blood drawn at a Quest lab near my home. However, the Quest lab keeps sending lab results with CgA levels that are lower than normal. Also, Quest Labs use a different scale to decide if the Chromogranin is too high. My oncologist said it was like comparing apples and oranges. Today I found out that the Chromogranin A drawn at the Cancer Center was borderline high. And, as my oncologist pointed out, that CgA was drawn the day after I just had the 40mg Octreotide LAR. I should have had very low CgA because I had just gotten a big dose of my medication.

Therefore, I am going to go back to getting my Chromogranin A levels checked at the Chao Family Cancer Center. I will go in an hour early before I get my Octreotide LAR injection and get my blood drawn when my Chromogranin A level should be at its highest. This way we should be able to get reliable numbers with respect to my Chromogranin levels.

The Crumbs that Fall from God's Table

2011-08-10T23:46:00.000-07:00

The Faith of the Canaanite Woman/ Matthew 15:21-28

Leaving that place, Jesus withdrew to the region of Tyre and Sidon. A Canaanite woman from that vicinity came to Him, crying out, "Lord, Son of David, have mercy on me! My daughter is suffering terribly from demon-possession."

Jesus did not utter a word. So his disciples came to Him and urged Him, "Send her away, for she keeps crying out after us."

He answered, "I was sent only to the lost sheep of Israel."

The woman came and knelt before Him, "Lord, help me!" she said.

He replied, "It is not right to take the children's bread and toss it to their dogs."

"Yes, Lord," she said, "but even the dogs eat the crumbs that fall from their master's table."

Then Jesus answered, "Woman,you have great faith! Your request is granted." And her daughter was healed from that very hour.

As you can imagine, the crumbs that fall from God's table must be tremendous. I am writing this to remind myself that I may not get all I want from God, but what I get is pretty amazing. I just had a breast biopsy today. I asked some friends for prayer, and I went through the biopsy with a feeling of great peace: lying there feeling like nothing was going to bother me. I actually felt quite cozy; I think that is the best word. The biopsy was done because a lump showed up in my mammogram. I have no symptoms. The surgeon cannot feel any mass, and the mass does not show up in an ultrasound, increasing the chance that it is benign.

In the past I have asked God for healing of complete conditions and I have asked for relief from symptoms. I have Sjogren's Syndrome, and I've had it at least 25 years. It's an autoimmune condition that begins with dryness in the eyes and mouth because the glands are being attacked. I began with dryness in my eyes that gradually led to a lump (pinguicula) on my left eye. My eye would water in bright light, and if I walked outside without sunglasses, I would grab my eye because of the strong pain that shot through my eye. Finally, the growth spread to my cornea (a pterygium), and my eye surgeon said we had to remove it.

Several weeks before the surgery, during a Bible study, I asked for healing in my left eye. The pain and watering were so bad, I had to pull off the road on the way home from work because I could not see the road. My friends prayed, and I was healed! I remember my friend saying, "She's healed," as the Lord spoke to her. After that day, my eye was moist and the pain and watering stopped. I considered cancelling the surgery, but the lump on my eye was a callus caused by the dryness that had been in my eye. It had not disappeared, and it interfered with the proper closing of my eyelid. That made my eye even drier, and my eye would not be perfect with the lump there.

My eye doctor is also an eye surgeon. I remember that he became more cautious as the surgery date approached. Sometimes a pterygium will come back after being removed, and the doctor told me that it can come back in just a few months. I wasn't worried because I knew my eye was healed. After the surgery, for the first six months, every time the surgeon checked my eye, he said, "We couldn't have asked for a better result." I knew that. God healed my eye.

There are more examples of how God relieved some more symptoms of Sjogren's Syndrome so that I could continue teaching. I do not know why He does not heal me, but He allowed me to keep teaching.

Five or six years ago, my mouth was getting drier and my throat would hurt every day. I was hoarse, also. I did get a wireless microphone to use in my classroom after going to a special therapist. She was not a speech therapist, but a voice therapist, I guess. My rheumatologist referred me to her. She found that I could talk 2.5 times as long when I spoke quietly, compared to using the normal volume of my voice to talk across a room. So using the microphone relieved the pain and it helped me to be able to speak to my students in a pleasant tone of voice and still be heard in the back of the room.

At this time I was drinking 4 bottles of water per day in my classroom to keep my mouth from being too dry. If my mouth was dry, my throat would get irritated, and I would cough repeatedly. That would end the lesson. Also, my feet burned from the neuropathy that Sjogren's causes.

I was being prayed for often during this time. I had a friend Gerri who would pray that I would be healed from the top of my head to the tips of my toes. One night I asked God for relief from the symptoms of Sjogren's Syndrome. This was a few years after the surgery on my eye, and my eyes were better, but it was difficult to teach. We were asking God to heal me completely, but if that was not His plan, I would be happy to simply feel better.

Since the night I prayed, the burning in my feet is much less. I don't notice most days. I do tend to wear sandals to keep my feet cooler, but the burning is inside my feet. The Lord reduced my thirst. I went down to drinking 3 bottles of water per day and my throat hurt less. God gave me the ability to keep teaching until my school district offered an early retirement incentive, and I could retire.

I was fortunate to be able to read from Matthew Henry's Commentary on the Bible at my father's house on August 13th. I found the comments on the passage of scripture about the Canaanite woman to be fascinating. I had wondered why Christ said things to her that seemed so off-putting. In other instances Christ had asked supplicants, "What do you want of Me?" Why did He make Himself so unavailable to this particular woman?

Of course, she was not Jewish, but neither was the Samaritan woman at the well. Jesus spoke to the Samaritan first. What was so different about the Canaanite lady? The difference was that man looks on the outward appearance, but God looks on the heart. Christ could see her heart.

Jesus Christ could see that she was a woman of great faith. He knew that if he presented obstacles to her, that her faith would grow. Each time he ignored her or verbally pushed her away, she came closer. She was not offended that He compared her people to dogs. She became even more humble, instead of arguing or being offended. When Christ said the food for the children shouldn't be given to their dogs, this lady was willing to eat the crumbs.

At that point Jesus answered her petition. He commended her faith, and healed her daughter.

As I read the pages in Matthew Henry regarding this passage in Matthew, I gained increasing clarity about my situation. I have known since 2007 that God was drawing me closer to Him. Now I know He also recognized that my faith was strong, and He knew it could grow stronger. He had confidence in me. Thank you Father for Your confidence in me! I love You.

Sharon

One Month Later

2011-07-19T23:01:00.000-07:00

I am not doing as well as I wanted to be. In June I had been retired for one year, and realized that I am getting worse twice as fast as I expected. My expectation was that I wouldn't be much worse at all in one year. Maybe have some more flushing and feeling hot a couple days a week. A few bouts of diarrhea per month---nothing that would change my life very often. Boy, was I off base!

Now it is just a month after my one year retirement anniversary, and I continue to go downhill. I have been able to give myself extra Octreotide once per day for a month, and that reduced the feeling of having a hotplate between my shoulder blades. I don't perspire as heavily. However, I can't stop my face from flushing, and I am having diarrhea and abdominal pain a few days a week. Today the abdominal pain has been greater than before, going up and down the ascending and descending colon. That's not unusual, but today the pain has never gone away. I couldn't do much because of the pain and weakness.

For a month I have sometimes had pain and a feeling of fullness across the upper abdomen. One day I felt like I was getting a "stomach flu." I had feelings of nausea followed by feelings of impending diarrhea, weakness and exhaustion. Then I realized I also had the full feeling across
the abdomen, and took my shot of Octreotide. I felt better in 20 minutes. I repeated those symptoms last Wednesday, but I had already taken my Octreotide. That was discouraging.

My family just returned from a nice vacation in Idaho. We were able to stay at my younger sister's house in the country, and see my great niece. My father went with us. We were gone 9 days and had a great time. I had difficulty staying in the car for two or three hours at a time while we drove to Idaho. Therefore, I have decided that I need to make my trip to France in the next 18 months.

It's a bucket list item. I was not planning to see France so soon, but now I know I had better go. Since I will be old enough to remove some money from my tax deferred savings next July, I will make the arrangements to see Paris, Versailles, and Normandy. I want to see where my Laizures (LeSueurs) came from. I guess we might be gone from home about 12 days. It is odd to have to speed things up because I don't know how much longer I will be able to go places without great discomfort.

Today I called my surgeon to make an appointment to see him. Usually, I have seen him after every Octreoscan, but last year nothing showed up in the MRI, Octreoscan or CT scan. The surgeon has more years of experience with carcinoid patients than my oncologist does, so I want to talk with him. My oncologist's nurse returned my call, also. She told the doctor what was going on, and he increased the dose of my LAR from 30 mg to 40 mg every 28 days. I have been able to get by on 30 mg for 2.5 years, so the progress of my cancer was slowed down by the medication. It's just time for a higher dose now.

This is not a terribly interesting post, but I want to be realistic about my case in order to give information to other patients. I know I wanted to know what others were going through when I started out with carcinoid.

The nice thing is that my Uncle Jim sent me a great passage of scripture from Ephesians 3:8-20. I have quoted part of it at the top of the blog.

"Although I am less than the least of all God's people, this grace was given to me: to preach to the Gentiles the unsearchable riches of Christ and to make plain to everyone one the administration of this mystery, which for ages past was kept hidden in God, Who created all things. His intent was that now, through the church, the manifold wisdom of God should be made known to the rulers and authorities in the heavenly realms, according to His eternal purpose which He accomplished in Christ Jesus our Lord. In Him and through Him, we may approach God with freedom and confidence. I ask you, therefore, not to be discouraged because of my sufferings for you, which are your glory. For this reason I kneel before the Father, from whom his whole family in heaven and earth derives its name. I pray that out of His glorious riches He may strengthen you with power through His spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you being rooted and established in love, may have power, together with all the saints to grasp how wide and long and high and deep is the love of Christ and to know this love that surpasses knowledge...".

God Bless,
Sharon

I've Passed a Milestone on my Journey

2011-06-17T00:03:00.000-07:00

Dear Friends,

I had my appointment with my oncologist last week. For the last 4 months, we have been meeting every two months because I have been staying stable. My labs have been good: my gastrin was at 33 and my Chromogranin A was at 1.4 this month. So we made my appointment for two months from now.
However, I have not been just fine. Since May 1, I have been flushing everyday. It covers my whole face, instead of just my forehead, as it had done for the previous month. Also, the heat that causes perspiration on my head and neck has increased. Now I feel as if there is a heated circle in the middle of my back spreading from one shoulder blade to the other. I perspire more and I am redder.

My oncologist said he doesn't doubt that my symptoms are caused by the carcinoid tumor. Also, I was red-faced and hot the whole time of my appointment. I didn't have to say much, before Dr. Z decided to increase my medication.
So I reached a milestone in the progress of my cancer. The standard dose (30 mgs) of the Octreotide that I have been getting every 28 days is not enough to control my tumor. I didn't think it was controlled last fall when I had diarrhea daily for 2 1/2 months, but the doctor didn't want to increase my medication because of that. He went for finding a medication that would treat my symptoms, and I started taking Welchol for diarrhea. Now, we have no other way to curb the activity of a neuroendocrine tumor, except to increase the dose of Octreotide.

I have read many accounts on Cancer Compass of other carcinoid patients who add shots to the usual routine of Octreotide. One mother wrote me that her 32-year-old son had fewer problems as he changed his diet in addition to incresed medication. He found he got more relief from a diet of fish, chicken and vegetables.

So I joined the ranks of those of you giving yourselves rescue shots. One more step closer to uncontrollable symptoms. I am giving myself a 100 mcg shot every morning. It doesn't take the flushing away. I have to give myself two shots away to do that, but I will follow the doctor's orders and just use 100 mcg.

Thank you for being here for me. I know some of you are on the same journey that I am on. I see the keywords you look up on Google that bring you to this blog. Thank you to the few people in Germany and the US who read every new post right away. You bless my heart. Thank you for joining me on my journey. It's easier when I am not alone.

Love,
Sharon

You CAN Change Some Things

2011-06-02T18:32:00.000-07:00

Hello! Happy June!
I was looking at the statistics for this blog today. It was interesting to see that someone had chosen to read my post from April 10, 2010 titled "I am the Scourge of Crabgrass, the Defender of the Iris". I reported there how I worked hard for months to remove all the crabgrass from a rectangular flower bed on the east side of my backyard: pulling weeds, spraying with crabgrass killer, pulling weeds again, spraying with Round-Up, and finishing with a pre-emergent crabgrass killer. It's been a year since I reported last, and that garden plot has no crabgrass in it now.

Two years ago, my husband and I began to work on the "no mans land" in our backyard. It was just a section in the southeast corner with nothing attractive planted there. Richard wanted to help make my dream about our backyard come true. It, literally, had been a dream of bowers of azaleas circling the yard. However, azaleas can't survive in the hot sun in Ontario, California. So we planted a camellia and five azaleas in the shade of a large bush, and four Our Lady of Guadeloupe roses beneath the palm trees. I added more paperwhite narcissus and daffodils in the original crabgrass-laden section, threw in some deep red geraniums and blue lobelia, and we finished up with alyssum and California poppies from seed.

It has been lovely to look at the yard this year. I'm just dealing with powdery mildew on the roses because of the recurring rains and shade from the blasted palm trees. However, temperatures over 90 degrees F will soon take care of mildew. My niece came over on Memorial Day and exclaimed, "Everything's blooming!"

Yes, everything that is supposed to bloom in May and June is blooming! There is no crabgrass in the flower bed on the east side of the backyard. The new plants we added are doing well. The three camellias (our first) have gone through their first summer and winter in good health, and the additional azaleas have all bloomed.Therefore, it is true that I can change some things.

So I have tried to derive some principles from this experience:

1. I have to keep working at things I want to change and be consistent in my work. Only attacking the crabgrass once or twice a year had no lasting effect. The weeds would come right back from their roots the next spring. I had to start working in November when the crabgrass was waining, and keep on top of it right through spring when the weeds would have come back again.

2. I have to know what I am dealing with. (Know your enemy.) What I plant has to be appropriate to the environment. Within my yard I have several little micro climates, and I need to know where they are. Our camellias are larger and greener than our neighbor's camellias because we made sure they are shaded by a fence, the house or a tall bush. Our new neighbors had planted two camellias in the middle of their front yard, which faces west. Their bushes are now covered with crunchy brown leaves. Actually, I'll need to look and see if they have any leaves left.

3. God can heal relationships. When my husband heard about my dream of a yard with bowers of blooming azaleas, he said, "We can make your dreams come true." I was moved that he would work on a project just to make me happy. It softened my heart toward my husband.

4. One success can inspire us to try a new one. Now I know I'll have few problems filling in the patch of land that is 18 inches by 5 feet outside the dining room window. My big new project is to put a planter in the front yard where there is none. I want to take the over-abundant plants from the side yard and add two of the roses from the backyard to create a curving planter in front of the house. The planter will have drought tolerant plants in it that will look better than the thinning grass. I estimate this will take two years! I will have to let you know how it goes.

Love,

Sharon

We are Fine

2011-05-19T22:54:00.000-07:00

May is passing by us. I wanted to let you know that we are doing much better. Almost three months ago Richard and I took our daughter to Loma Linda Hospital because she was in a crisis, and I spent a month in agony. That seems far away from me now. The treatment Kay received took several weeks to bring her back to her normal self. Some days I spent my prayer time in tears, wondering when Kay's life and mine would calm down.

Now things are much calmer. Kay is at home and driving herself to various appointments. We are both reading classic books like So Big, Rebecca and My Antonia. We take a day trip out-of-town every two weeks go to the beach or look around a new city. The three of us have been to the former home of Sam Maloof, who was a craftsman of fine wood furniture. Sam gave rocking chairs to every president from John F. Kennedy through George Bush. It was lovely to see the home he built, adding one room at-a-time to a small cottage.

I do not know what the future holds. I have faith the I will continue to be well for several years. It is now 3 1/2 years since I developed carcinoid cancer. There are a few new therapies being developed now. One of them won't work for me because I don't produce 5-HIAA in my urine. However, my oncologist tells me the targeted therapies will be useful to me, and those are getting closer to being used.

I have the tiny carcinoids that are only about 1mm. If you have any information about survival with with that type of carcinoid, I would like to hear from you. I have one tumor (so it seems from the scans) in the upper part of my liver.

My daughter has been helped by her doctors and medication. We have faith that she will be able to go to the mission field, as she has wanted to do since she was 12 years old. If she cannot go, then God has another plan for her here in the US. However, Kay's faith remains strong that she will go back to college to major in Intercultural Studies and serve God with her life.

As we have gone through these had times, our family has been helped by the emphasis at church this spring. Our pastor has been preaching on what to do when life is unpredictable for several weeks. One of his key verses has been Ephesians 1:3. Praise be to the God and Father of our Lord Jesus Christ, who has blessed us in the heavenly realms with every spiritual blessing in Christ. Another reference is Romans 12:2 Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind.

Some helpful notes:
The issues you are dealing with are already decided by God.

"Failure is the greatest opportunity I have to know who I really am." William Klipinger
(In our church we refer to failures as "setbacks".)

"... the people around me do not make me the way I am, but reveal the way I am." Sam Peeples

This last one means the most to me:
"If I know what I am supposed to do, it doesn't matter what everybody thinks." Pastor Joel.
Be close enough to God to know what God wants you to do.

Blessings,
Sharon

The Joy that Music Brings!

2011-04-09T13:17:00.000-07:00

Dear Friends, If you have read this blog for a few years, you are aware that I frequently refer to music as helping me weather the storms of having cancer. In fact, it is a source of joy! I have quoted songs by Francesca Battistelli, Jeremy Camp, Matt Redman, David Crowder*Band, and others. Yesterday I found information about how and why music is so helpful to Christians. The new information is in the book Knowing God Intimately by Joyce Meyer copyright 2003 by Joyce Meyer. It is in chapter 10 "Ever Be Filled" with the Holy Spirit in the section HAVE A HAPPY HEART.

Joyce points out that some actions and some attitudes do NOT help us to be filled with the Holy Spirit. "Why not? Because the Holy Spirit is not negative in any way. His silence during such times is our signal that He is not pleased with our conversation.

When I feel the Holy Spirit being stirred up in me, I know He is pleased; when I feel Him receding, I consider that He may not be pleased.

The Holy Spirit is very fond of 'right' music--music that is encouraging, up-lifting, positive, and joy-filled--music that has a good message. In the last part of Ephesians 5:19, the King James Version says that we are to make melody in our heart to the Lord. That literally means we are to go through the day with a song in our heart...In fact, it is also spiritual warfare.

Satan is opposed to joy and will do all in his power to prevent us from having it. According to Nehemiah 8:10 KJV, the joy of the Lord is our strength. Satan wants us weak, but music stirs up our joy, and therefore, our strength. The more we sing and make melody in our heart, the better off we are."

Now I understand better why I was helped so much when all I could do was pray the songs by Casting Crowns and others as I drove to work everyday after my cancer diagnosis. I was increasing my strengthin the Lord. Plus, the Holy Spirit was pleased with me and spending much time in my company. Thank you, Father, for your strength and Your love.

Sharon

My Most Recent Visit to the Oncologist 4/6/11

2011-04-07T17:02:00.000-07:00

Dear Friends,

I was just at the doctor ( Dr. Z, my oncologist) yesterday where everything went well. My symptoms continue to stay minor. Oddly, I had gotten confused about the date of my Octretide injection and had come in a week late for treatment. However, I was fine. That was the first thing my doctor asked me about, did I notice any problems after going 5 weeks since the Octreotide? No, just a minor problem on Monday, for which I had taken one dose of Welchol. Doctor Z thought that was great.

Dr Z has become much more personable in the last two years. At that time he had told me very bluntly that I didn't need to ever hope for a surgery that would remove the cancer from my liver. Since the carcinoid cancer was in my bloodstream, it was everywhere in my body. How else had it gotten to my liver except through the bloodstream? I guess he wanted to make sure I didn't have any foolish notions that I could ever be cured.

Ever since I had known him, Doctor Z was so uncompassionate and unsmiling that I wondered if he had Aspberger's syndrome or another disorder that keeps him from connecting from people. He is a researcher at the university medical school where I am treated. He is in clinic only Tuesday afternoons and Wednesday mornings; the kind of schedule that would suit a very reserved person.

(My surgeon is totally different. He is outgoing and always has surgery students trailing after him. He is an upbeat guy who hoped to effect a cure of my carcinoid by resecting the duodenum even when my tumors were not visible. He knew an expert in endoscopic ultrasound could locate the tiny tumors in the operating room before the surgery, so the tumors did not have to be large. I went through the surgery, but unfortunately, the first tiny tumor had already metastasized to my liver.)

Yesterday Dr. Z asked about how I liked being retired, and I told him about how I am caring for my daughter now. I am driving her to outpatient services at a hospital associated with Loma Linda University. Each time I take Kay or pick her up, I drive 52 miles. Dr. Z was understanding, and said six months from now things will be alright, but it is hard going through it.

He understood about her condition and said what she is doing is quite normal under the circumstances. Before he left he shook my hand and wished me well. He said all the right things. It is as if Dr. Z has been taking lessons in how to relate to patients. Ironically, I had felt as I drove to the Cancer Center that my friends were not being supportive enough to me as I go through this hard time. I wondered why no one responded to me. Then, when I go to the oncologist, I get support!

God is good. One more time He worked behind the scenes to bring about a result that benefited me without my "helping" Him. My main lesson learned this week is that I can ONLY RELY ON GOD. No one else will come through all the time. Some people rarely come through for you, but God always does. Thank you, Father. I know how You love me.

Love, Sharon

You can Rely on God

2011-04-06T20:49:00.000-07:00

Dear Friends,

I have been listening to Jeremy Camp Cd's as I drive back-and-forth from home to Kay's therapy and to my appointments at the Cancer Center. It has been exhausting the last two days because I have been driving 150 miles per day to take both of us to our appointments and back home. I have found strength and favor from God, and encouragement from Jeremy's music.

When I started out on this journey I thought I might be driving closer to 180 miles per day, and taking 1.5 hours to go from Redlands to Orange, California. By taking the most direct freeways, the route was only 150 miles round trip, and I got to Orange in only 1 hour and 10 minutes. So conditions were not as bad as I thought they would be. I was driving between 7:50 am and 2:30 pm, so that helped me to avoid heavy traffic. God blessed me by giving me smooth sailing free of traffic jams.

One of my favorite Cd's is Restored by Jeremy Camp 2004. I have had the record for several years, and I have never put it away for even 6 months. Other Cd's get played for 1-3 years and are then stored in a Cd rack. I love the title song; it has lifted me up many times. However, Everytime, reaches me every time I hear it. It is all true.

Everytime I'm on my knees pleading for Your strength I will find You there, Find You there.
Everytime I'm on my knees reaching for Your strength I will find You there, Find You there.
To feel the crown of the One I have breathed for To know the door It will never be broken
Because I've found that time, this time, Has no hold on the rate that I need You! And I know it's never hard to find You.
I'm holding onto this hope I've been given To be always with You. I'm seeing now that this fullness of faith is Always seeking You

Another wonderful song is Enough from Carried Me, The Worship Project.
" All of You Is more than enough for all of me For every thirst and every need You satisfy me with Your love And all I have in You is more than enough! "

Thanks for your love, Sharon

What is Happening Now

2011-02-25T10:03:00.000-08:00

I have edited this from its earlier form to give my daughter more privacy. Dear Friends, For the last four days I have been encouraged by looking at this blog and seeing that many people have stopped to read it. Seeing the someone has looked here for help uplifts me.

It seems like readership increased as I sat in the ER with my daughter and my husband. My husband and I took her to the best place we knew of: Loma Linda University Medical Center. She was assessed in the emergency room. (You can schedule an appointment online to get into the ER there. I recommend it. Strongly.) She was referred to their facility nearby that is run by Loma Linda, and admitted. A young relative of mine had been there a few years ago, and says the staff will treat her well there.

Please pray for Kay and for us. Pray for wisdom, for healing. Pray the doctors will talk to us about what is going on. Kay is a very young adult, and I am waiting to see if the doctor has consent to talk to us. Pray for me when a 20-year-old staff member speaks to me like I'm not supposed to hear anything about my daughter. Her Dad and I brought her in, and are paying for her treatment with the insurance we earned by years of work. When we brought her in, the staff wanted to talk to us, because Kay wasn't much help.

For comfort, I turned to Philippians chapter 3. I used to read Philippians daily when I first was diagnosed with cancer. I remember when I prayed in 2007 that God could take my health, my daughter or my father to keep me in His perfect will. This is one way of losing my daughter.

"More than that, I count all things to be loss in view of the surpassing value of knowing Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them but rubbish in order that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith,..."

Philippians 3: 8-9 New American Standard

Welchol works on Diarrhea

2011-02-11T13:28:00.000-08:00

Hi,

This is not real pleasant subject, so I will just use the word one more time. From now on today diarrhea will be referred to as the d-word. I wanted to use it a couple times so that this might show up on a Goggle search. Many of my readers find this blog through Google, Ask or Right Health. D-word is one of the most frequent problems we have, so I wanted to have a separate post about how Welchol helped me.

Looking at some old posts from September to December, I wrote of being increasingly sick from the d-word. It started at two days a week and increased to daily. That's a very common problem with carcinoid, and I began to despair of ever being well again. I hadn't expected to become housebound so soon. I'm not even 60 years old--I have lots of things to do still! And I know some of you are 70 and sitting there saying the same thing. We want our lives to be full.

In November I had a regular appointment with my cardiologist (Dr. Chen) whom I see about 3 times a year. I told him about my symptoms, and he suggested I use Welchol. We had just gotten my "bad" cholesterol down to 80, and Welchol is used to lower cholesterol. He explained that it is a packet of resin beads that attract cholesterol, and the cholesterol passes out with the feces. It is not a drug that circulates in the blood stream. It also makes people constipated.

I used Welchol daily for the first 30 days. I would start to get d-word, mix the Welchol with water, drink it and wait. About 90 minutes later it seemed to have worked, and I could resume my activities. It would take about the same amount of time for Lomotil to work, and that is a drug that paralyses the intestines. Also, in weeks were I was having d-word daily, I could just use the Welchol in the morning and go out that day. I went through the first box of Welchol in 30 days.

It's February and I still have half of the second box in my home. It's ready in case I need it. I hope Dr. Chen isn't disappointed that I have not kept up using it daily. He wants my bad cholesterol down to 70!

The information on front of the packet is: Sugar free. Welchol (colesevelam HCl) For Oral Suspension. 3.75g. Citrus Flavor. Single-Dose packet. Each packet contains 3.75 grams of colesevelam hydrochloride. Phenylketonurics: CONTAINS PHENYLALANINE 48 MG PER PACKET.

Note: Welchol is gritty. It's not fun to take, but you can dilute it in 1/2 to 1 cup of water. Someone wrote me that you can put it in soda.

UPDATE 12/17/11

I am happy to report that Welchol worked well for me for 13 months. It would stop diarrhea for 10 -24 hours for me. This month, however, I noticed it only worked long enough on a Sunday morning to get me and my passengers to church and back home again. It was effective from about 8:30 am until 12:30 pm, but that was long enough to get to worship. I spent the whole sermon feeling lots of activity in my intestines, and hoping I could get home in time. I did get home, but was disappointed Welchol was not as effective as it had been.

Yesterday I was very ill from carcinoid. I went through three doses of Welchol and two shots (100 micrograms each) of Octreotide Acetate. Basically, I went through two whole cycles of emptying my intestines. The 2 Welchol and the first injection lasted long enough for my daughter to drive me to a doctor's appointment, rest and walk my beagle three blocks. Then shortly before bedtime, I was sick again. I took more Welchol and took the second injection. That was sufficient for me to sleep through the night. I'm still wearing a bathrobe today and sitting around the house.
I have more understanding of the carcinoid patients who talk about the unrelenting d-word. It seems like it will win in the end.
I hope this helps someone.
Sharon

New Data

2011-02-09T22:40:00.000-08:00

I got the results back from my blood tests done in February. My Gastrin is 38, which is normal. My Chromogranin A is 1.0!

Yipee! Thank you, Father!

A Trip to the Emergency Room

2011-02-08T12:29:00.000-08:00

Hello,

My visit to the emergency room two days ago had nothing to do with carcinoid cancer. However, the carcinoid did influence my blood pressure.

I had an accident on Sunday when I fell and struck my head. The back of my head was cut on the corner of a stool, and my scalp was bleeding. I was surrounded by friends, so they did all the right things; calling 911, applying direct pressure, making sure I stayed conscious, etc. I had no intention of becoming unconscious and my mind was clear the whole time. My pastor told me the next day that I was running on adrenaline while I was lying there telling the EMTs my medications and how to spell them.

As usual, my blood pressure went up because of the trauma and the stress. I guess it got close to 195/100. When I was in the hospital, I could see it was 183/78 which is not really unusual for me in a situation like that. I told the ER nurse that the accident caused the carcinoid tumor to pour chemicals into my bloodstream that raised my blood pressure, but I don't think she understood. I was well taken care of and released quickly.

In the middle of the night when I was too uncomfortable to sleep, I began to think about how to tell medical experts about carcinoid crisis. They don't think of it happening in an accident--they don't seem to even know about it--but one of us can die because of it. About 4AM I was deciding to create a 5x8 laminated card for the doctor and the nurse that would give them some quick facts about carcinoid crisis and a website they can look at in time of need.

I did decide to get a Medic Alert bracelet so I don't have to recite all my afflictions and medications after a bonk on the head. I have also decided to ask people to read the medications back to me. I got asked the same question by three people who had not been conked on the head, and all the ER doctor really cared about was did I take the medication Plavix. The paramedic had written down all the drugs I had told him back at the house. Why didn't anybody read it back to me to help me remember?

Let's see if I can remember to do that next time.

Thank you for your prayers. I have 6 staples in my scalp and they should be removed about February 15.

God bless,
Sharon

I Pray for You

2011-01-18T16:20:00.000-08:00

Dear Friends,

I do pray for you. As I said a few months ago, I can see the countries my readers are in, and I can see the search words you use on Google or ask.com. I have prayed for the person that entered "dying carcinoid" and "carcinoid 2mm" and others. I have those tiny tumors, also. How moving it is to me to see patients are looking for encouragement, comfort, and information, and they come to this blog. God bless you all. God comfort you, strengthen you, heal you and hold your head up. God loves you.

The post that the most readers look at is the one about the Octreoscan. Everyday 1-5 people read that. I wrote it to be a source of information to you, and I'm glad that it is doing that.

If you want me to pray for you, please leave your request in the comment section, and I will add you to my daily prayers. I know God doesn't heal us all, but He can lessen pain, increase failing appetites, shrink tumors, give us composure, and give us assurance that our lives are not lived in vain. Even our lives that are shortened by this crummy illness have great significance to someone.

Do not fear for I AM with you. Do not be dismayed for I Am your God. I will STRENGTHEN you and HELP you; I will uphold you with my righteous right hand. Isaiah 41:10

Love,
Sharon

Some Encouraging Words

2011-01-18T15:51:00.000-08:00

Often when I am studying my Bible, I think of ideas to share with you. I look for large passages to expound on. I haven't found anything very long yet, but I was reminded of a favorite passage today that is encouraging.

It is in Hebrews 12: 1-3. This follows the wonderful chapter of the hall of faith; I love reading chapter 11 and leading right into chapter 12. It goes together.

Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance, and the sin which so easily entangles, and let us run with endurance the race that is set before us, fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. For him who has endured such hostility by sinners against Himself, so that you may not grow weary and lose heart.
Hebrews 12:1-3 NAS

Happy New Year!

2010-12-27T14:22:00.000-08:00

Hi,

I have added an update near the bottom from my birthday, January 7th.

I haven't said much this month because I've been busy creating another blog about my McDowell ancestors. Remember the big photo of Fallingwater River that was at the beginning of this blog? It's decorating the "McDowell Family of White County Tennessee" now.

The new picture on this blog is from the Mission Inn in Riverside, California; it seems evocative to have my journey symbolized by a stairway and a door. (LOL. Don't read the sign at the bottom, or you will find out the door doesn't lead anywhere. Just pretend there is still a garden at the top of the stairs.) The photo is from our anniversary dinner at the Mission Inn in 2009.

I am doing well. My next oncologist appointment is not until February. I am convinced that the tumor in my liver is smaller than several months ago. I had a little Chardonnay with a Christmas luncheon on December 21, and it became a demonstration of how small my tumor had become.

In January 2010, on my birthday I drank one inch of Reisling (a white wine) with my dinner. I knew there was a possibility of having a reaction to the alcohol with a carcinoid tumor in my liver. I wasn't sure what was going to happen, so I drank just a small amount of wine. I have read of every reaction to alcohol from turning red to having a carcinoid crisis.

In the middle of the night I woke up drenched in sweat. My hair was wet and my pillowcase was wet. Somehow the alcohol in the wine stimulated the carcinoid so that it poured hormones into my bloodstream that produced excessive perspiration.

Last week on the 21st, I drank about one inch of white wine from a white wine glass. I slept through the night just fine. When I woke up in the morning a single trickle of perspiration ran down my chest. That small reaction tells me that the cancer has shrunk; it was too small to produce much hormone, so my reaction was less than 11 months ago.

January 7: When I went out to eat on my birthday, I tried a glass of Reisling with my dinner. This was a larger glass of wine, probably because the restaurant was charging $7.25 for it! Since I don't drink very often, I can feel the effects after only a few ounces, so I stopped at half a glass. That night I had no unpleasant reaction to the wine at all!

So now my scans, blood tests, and my body's own reactions match! The tumor is smaller than it was at the beginning of 2010. That's a good way to end the year! Thank you, Father. I love you.

Chromogranin A and Octreotide Scan Results

2010-12-08T21:34:00.000-08:00

Hi,

Here's a recap on how I am doing. After becoming sick from Carcinoid on an increasing basis from August 25, 2010 through November 14, 2010, I am now doing much better. Much of the improvement is due to using Welchol almost daily in addition to Octreotide. Prior to the Welchol I was sick every day and had many activities cancelled. I also believe my tumor has gotten smaller; I don't know how else my Chromogranin A values could be below 5!

However, I have been flushing more often for two weeks. Almost every time I walk past a mirror my face is pink. This is another symptom of hormones being dumped into my bloodstream by my tumor. My oncologist, Dr. Z, says the flushing can be caused by serotonin, histamines, or several other chemicals. We have never checked for histamines in my bloodstream; that's one we can check next. I may be flushing more because I was giving myself shots at home every 8 hours for one month instead of getting one long-lasting shot every 28 days. Also, I went off Octreotide in order to have the scans done last week.

I went to the oncologist today. I had an Octreoscan done on November 29-30, then my blood was drawn on December 3. Usually, after my scans are done, my blood levels of my cancer markers are high because I have to go off my usual cancer medication. Please see the previous post for the explanation.

Chromogranin A (CgA) and gastrin are the two cancer markers for carcinoid that sometimes show up in abnormal amounts in my blood tests. [I am trying to type this in columns, but blogspot doesn't seem to do that, so I am working on something that will be organized.]

Here are some past numbers:

Normal Range FASTING CgA : 0-50 ng/mL; Gastrin < or ="100">

[Right here I had 2 paragraphs of data showing my cancer markers for 2009 and 2010. After a few weeks they disappeared. I don't know how I did that! However, in general the numbers for Chromogranin A were varied from 162 to about 50 ng/mL during 2009. For 2010 the numbers began to drop down from 40 to 20 to 15 then 8, 7, 3, 2.8 and 1.5. So praise the Lord! My cancer markers dropped precipitously!]

The great news is that last week, after going off of Octreotide for my scans, my Chromogranin A was down to 1.5 ng/mL. No new tumors were found in the scans, so that for once, my scans and my cancer markers match! The tumors are small and the production of the hormones is down.

Thank you, Father. I know how you love me.

I looked back at the blog I wrote after my pastor prayed for me on October 24, 2010. Possibly this good result from my scan and my blood work is from that night. God began shrinking my tumor down so that the hormones in my blood return to normal even when I wasn't on my medication.

What Happens during an Octreoscan?

2010-11-30T22:28:00.000-08:00

Hi,

Today I finished a round of Octreoscans, the nuclear medicine test for carcinoid and other endocrine tumors. Thank you for praying for my composure while I had all my "pictures" taken. I thought I would explain what happens when I go in for a scan. I don't think I've ever seen it spelled out, and I noticed someone found my blog by asking what an Octreoscan was. So I'll explain it from my perspective.

But first, I found a new verse today. I am almost done reading through Romans. This is Romans 15:13. May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. That is how I want to live: To go on with my life as if I expect to live a "normal lifespan". To hope that I can do most of the things I want to get done and that I will enjoy the time while I am here. Also, to find my greatest joy in knowing Christ Jesus my Lord.

When I go in for an Octreoscan, I have to go off of the LAR (long-acting injection) of Octreotide for 8 weeks. I have to start giving myself the injections of Octreotide Acetate in my belly every 8 hours. Also, three days before the scans I have to stop all Octreotide treatments because it can cause a false positive on the scan. Octreotide automatically goes straight to carcinoid tumors. It attaches to the tumors, and if it is in your body during the scan, then the radioactive Octreotide mixes with it and makes it appear that you have tumors. So all Octreotide has to clear out of your system before your scan.

The Octreoscan is a nuclear medicine test. I usually arrive about 9:15 am and get injected by 10:00 am with the radioactively-labelled Octreotide. I don't have to fast, but I am supposed to drink plenty of water the day before and the day of the first scan. After having 5 Octreoscans I have learned that the "be well-hydrated" is code for "don't be constipated." The staff won't say that before you come in, but a couple of the technicians have told me that I should eat lightly (She suggested I just have soup and salad for supper) and drink lots of water, so that the bowel will be easier for the radiologist to see inside of. It's hard to see any tumors when the bowel is filled up.

Note: I have learned since writing this post that there is another reason for being well-hydrated. It helps to flush the radio-active material out of your body. So you need to be drinking water the day before and the day of the injection. This is the post that is read by someone every day, so I want to have correct information here. 1/11/11

The first set of scans is done 4 hours after the radioactive Octreotide is injected. So I sit and read, shop, have lunch, visit my daughter, etc. Back at the laboratory there are actually three sets of scans to go through. You can listen to a CD player or ipod as long as the headphones are made of plastic because you can attach them to your head, and leave the metal part out of the range of the scanner.

1. The first scan I have is always the Nuclear Gamma Camera. This takes about 1 hour for the full body scan. This does not emit any radiation; you emit the radiation! The camera detects the radiation and it shows up on the computer monitor the tech is looking at. It is normal for the liver, kidneys, bladder, spleen, etc. to light up from the radiation. It is the job of the radiologist to interpret what is abnormal absorption of of the radioactive Octreotide.

The first few times I had this scan I felt a little claustrophobic because the panel comes to an inch above my face. The good part is that you slowly scoot out from under the panel,and your face comes out first.

2. The second test I have is a 360 degree CT scan. This one is 30-40 minutes long. It's cool because the panels rotate around around your body. It is not claustrophobic because there's wide open spaces between the panels.

3. The last scan is a nuclear medicine scan. It's also 30-40 minutes and seems to go quickly after the other two,

The next day I come back again and go through the same scans. There's no more injecting the drug because the doctor is watching to see what happens 24 hours after the injection.

Carcinoid Status Update

2010-11-28T18:55:00.000-08:00

It's scanning time again. Tomorrow I go in for an Octreoscan. That is the special nuclear medicine scan done to detect carcinoid tumors. The tumors do not necessarily show up in a PET or CT, probably because they can be small. I had a scan done on November 20, 2008 that showed abnormal absorbtion of the radioactive compound in the dome of my liver. That would indicate carcinoid tumors there. Then I began using Octreotide as medication, and the tumors got smaller.

I have not had an Octreoscan done this year because all through 2009 they did not show anything. [Plus, they cost my Insurance company over $10,000.] So, this year we tried doing an MRI in the spring. An MRI exposes me to less radiation, too. The images from the MRI were very clear and show a couple lesions in my liver that were only 2mm. However, those are not the carcinoid tumors. The surgeon removed one of those lesions in 2008 just so my oncologist could be reassured about what it was, and it was harmless. So, the MRI found structures that are only 2mm, which was nice to know. The two carcinoid tumors that I have had removed have been less than 1mm.

So Monday and Tuesday I'll be back at UCI Medical Center in Orange, California. I'll arrive at 9:15 and be hooked up to some radioactive Octreotide about 10:00 am. Then I wait about 4 hours for the first scan. I'm free to move about the campus or go shopping across the street. At 2:00 pm the technician does the first scan. I'll probably leave about 4:00 pm.

Tuesday morning I return at 9:00 or 10:00 to have the second scan done, and we go through the whole routine again. It takes about 1.5 hours for the longer scan that follows one that's only 40 minutes long. Immediately after the scan, I will go across to the Chao Family Cancer Center and have an injuction of my long-acting Octreotide. Then I should be set for medication for 28 days.

Lately, my lab results keep coming back normal. My Chromogranin A is below 10 and my gastrin is normal. That's a great frustration for many carcinoid patients. (I follow what they write on Cancer Compass.com.) Some patients don't get diagnosed because the high amounts of hormones in their bloodstream don't always show up when they are at the lab. I joke about hiring a phlebotomist to follow me around and draw blood right when I get sick. I have been reading comments lately that the ourpouring of chemicals into our blood is in cycles, not constant. That would match what I have been finding.

Since I was put on Welchol I have been much better. Thanks for your prayers. It seems to work very well for me, and I have not been sick for a few weeks. So I continue to use the Welchol and Octreotide to treat carcinoid. So as long as I can take a 3-hour nap five days a week, I'm doing OK.

Love,
Sharon

Finding Encouragement in the Bible

2010-11-16T21:04:00.000-08:00

Hi,

As I looked over that stats on this blog, I saw someone had located My Journey to Joy by entering the key words "finding encouragement." They were linked to my earlier blog about finding encouragement on the Internet. I wonder if this helped them. It recounted how I was in pain from carcinoid and looked on my computer for some hope. I didn't mention that I had come here with a prayer in my heart that God would lead me to something that would work for me.

My earlier posting recounted how I found a blog belonging to a Christian carcinoid patient: dgwhealthnews.blogspot.com. I was encouraged to find this because it meant I was not alone. Also, Dennis G.W. writes such an excellent email called "The Encourager" which is attached to his blog. I hope that reader went on to read Dennis' blog.

I can't go back and fix the past, but I can offer some encouragement here. One time when I felt like my cancer battle had me wandering in the wilderness, I had prayed hard for help. The next morning I was making a cup of tea, and to my amazement a preacher on TV spoke exactly to my situation. I didn't even know who he was. I had turned on the TV to see the news, and God sent me the word I needed.

It was a sermon that referenced Psalm 57. In this psalm David had fled from Saul and was hiding in a cave. David had been anointed the next King of Israel while Saul was still the current King. David writes:
Have mercy on me, O God, have mercy on me,
for in You my soul takes refuge.
I will take refuge in the shadow of your wings
Until the disaster has passed.

I cry out to God Most High
to God, Who fulfills His purpose for me.
He sends from the heavens and saves me
rebuking those who hotly pursue me;
God sends His love and His faithfulness.

I am in the midst of lions;
I lie among ravenous beasts--
men whose teeth are spears and arrows,
whose tongues are sharp swords.

Be exalted, O God, above the heavens;
let your glory be over all the earth.

They spread a net for my feet--
I was bowed down in distress.
They dug a pit in my path--
but they themselves have fallen into it.

My heart is steadfast, O God,
my heart is steadfast;
I will sing and make music.
Awake, my soul!
Awake, harp and lyre!
I will awaken the dawn.

I will praise You, O Lord, among the nations;
I will sing of You among the peoples.
For great is Your love, reaching to the heavens;
your faithfulness reaches to the skies.

Be exalted, O God, above the heavens;
let Your glory be over all the earth.
Psalm 57: 1-11

A psalm of David.
NIV except that I capitalize pronouns refering to God, and the NIV does not.

Other Psalms of encouragement include 40, 91 and many more. That preacher that I just happened to find on TV was Joel Osteen. At that time I did not know who he was. God just made sure I was there to hear what he had to say.
Thanks,
Sharon

Wow! Thanks for Reading Me in China!

2010-11-12T23:05:00.000-08:00

Hi,

I just discovered there is a way to view the numbers of people reading my blog, and what countries they are in. I was aware I have friends and relatives in Canada, Australia, and the USA who read my blog. What is super amazing are the other countries where people have found this blog. That's the wonder of the Internet.

So, "Hello!" to those of you in Hungary, South Korea, China, Slovenia, Austria, Italy, the UK and everywhere else! I don't know how you found My Journey to Joy.

Actually, I am aware how a few of you found it. You clicked on the hyperlink from the Carcinoid Message Board on Cancer Compass. Some of you were searching Dave Thomas and carcinoid cancer, or Steve Jobs and NET. Some I'm glad you found me. That is really neat.

I hope I encouraged some of you or gave you information that was helpful. I know that many of us are on the same journey, but at different points along the way. Thank you to my loved ones who check here just to see how I am doing, and to pray for me.

Please leave a comment when you stop by again. It would be fun to know your first name and where you are living. Last year I got the nicest comment from Richy F.; he found me on Facebook. I still treasure that.

God Bless You All,
Sharon

How my Medication works

2010-11-03T17:45:00.000-07:00

When I picked up my Octreotide (Sandostatin) today, I noticed the excellent list of uses for Octreotide. Nurses are aware that it is used for diarrhea, but most people don't know it is the treatment for some rare cancers.

This is a quote from the brochure that comes with the prescription when the Rx is purchased at Rite Aid.:

"Octreotide is used to treat watery diarrhea and sudden reddening of the face and neck caused by certain types of tumors (e.g. carcinoid tumors, vasoactive intestinal tumors) that are found usually in the intestine and pancreas. The symptoms occur when these tumors make too much of certain natural substances (hormones). This medication works by blocking the production of these hormones. By decreasing watery diarrhea, octreotide works to reduce the loss of body fluids and minerals... This drug is not a cure for these conditions. This medication is usually used with other treatment (e.g. surgery, radiation, other drugs). "

Since I wrote last I have added Welchol to my treatment. Last week on Monday as I was telling my cardiologist about my increased carcinoid symptoms, he suggested that I use Welchol to combat the diarrhea and decrease my LDL a little more. (It's at 69, yes, 69. The man's a fanatic about low LDL. Actually, he wants my LDL low because my HDL is at 39, and my triglycerides stay above 150 unless I am being REALLY good. Also, the people having heart attacks now have LDL at 130.) I the idea about Welchol past my internist, and he thought it was a great idea. He said patients complain bitterly about how constipating Welchol is, and he had used it before in a patient before who suffered from a nasty digestive disease.

So, what is Welchol? It comes in a packet and you mix it with water. It is tiny resin beads that absorb cholesterol from the intestine. Having used it for 9 days, it seems to be working like a great little plug. I continued to have diarrhea for 8 days after starting Welchol, but it slows everything down, so I didn't get as dehydrated. Also, once I begin to get sick, I take the Welchol, and it seems to work in about 90 minutes. Before this, it was taking 2-3 hours before I would stop being sick. So I am better.

Thank you for your prayers. I am sure prayer and God's influence helped Dr. Chen come up with the idea of the Welchol. Also, The Lord has been blessing me with some days that are either really good all morning up until 1 pm like yesterday. Or a day like today when my cognitive function was impaired until the afternoon,and then I began to feel better. How I would like to get by brain, prayer, and Bible study all together, so I write a blog that is worthy of Him.

Love,
Sharon

It's Me, O Lord, Standing in the Need of Prayer

2010-10-24T19:31:00.000-07:00

Hi,

Postscript written 12/2/10: Since I wrote this I have seen the gastroenterologist and begun taking a new medication. My cardiologist started me on Welchol, which I write about in another column. The gastro didn't think I had any other digestive conditions and he thought the Welchol was a good idea. I was nice to see him; we had not seen each other since he did the biopsy that found my first carcinoid tumor. Also, I have resumed taking Nexium and Mobic, which did not cause any of the illness. So my symptoms are much relieved. Thank you for your prayers.

Original Post:
I'm in a quandary. All my labs tests for carcinoid cancer are coming back normal: Chromogranin A, gastrin, even the special urine test I asked my oncologist to do [5-HTP.]
However, the diarrhea is getting worse and worse since August. Wednesday I was sick most of 13 hours from 7am to 8pm. I got a few hours of rest in the middle of the afternoon. I am
giving myself rescue shots of Sandostatin and taking Lomotil the maximum dose my doctor allows. Some days I am not sick, but it has become more common for me to be sick.

Last night I had the faith to believe God might heal me. Sometimes I don't think He is going to heal me because it's been so long since I first got sick. My pastor and others were praying for people during church. He prayed for me and others. Then the pastor said, "This might sound odd, but as I was praying for Brandon, I was told to pray for someone's liver." No one else stepped up, so I did, since my cancer is in my liver. It is exciting to think that God recognized I was there, and He sent a special message to Joel (my pastor) to pray for me.

I haven't felt any different since that prayer, but I know I was prayed for regarding healing. That makes me wonder, what if God is healing me, but I can't tell because of the diarrhea? All the data coming back from the labs shows good results. What if the diarrhea is being caused by something else, and not carcinoid cancer? My doctor and I have considered that possibility, so I have an appointment with a gastro-enterologist on November 15. This week I began to wonder if the diarrhea could be caused by one of the many medications I take.

Therefore I am not taking Mobic or Nexium for a week to see if that improves my digestion at all.

So I appreciate your prayers. Very much.
Sharon

God Expects Me to Keep my Promise

2010-09-24T23:06:00.000-07:00

September has been a month where I learned that God really hears what I pray to him. He also hears my promises and expects me to keep them.

When I wrote a blog at the end of the school year, I said that I felt God was calling me to be a woman "of one thing"--someone who spends her time worshiping Him. To minister to the heart of God. I quoted a passage from Captivating, a book by John and Stasi Eldredge. Little did I know that this calling was not a product of my overactive imagination.

In August I was having difficulty exercising at Curves because of a pinched nerve at the base of my spine. I could only use 5 out of 12 machines: the ones for the upper body that don't pull on the base of the spine. I was discouraged because I wanted to reduce my waistline. It seemed like the only thing I could do to burn calories was to go for walks. Because of the excessive heat, I decided to take my walks in the morning about 8:30 and walk the dog at 7:30 pm. My plan was to walk every day immediately after breakfast.

There was just one problem. That mean I set out walking before praying and spending my time with God. When I would return from my walk, I'd get busy with the errands of the day. I didn't spend much time in prayer. I prayed, but I didn't sit in my prayer chair very long and worship God. My gradual study of Acts was crawling along. This isn't the behavior of a woman who wants to minister to the heart of God. So He called me on it.

On the last day of August, I set out for my walk and became sick after passing 5 houses. The next day, I walked past only one house, and turned my right foot. I fell down on my foot and broke the 5th metatarsal. It only took me a few days to figure out what God was telling me.

God has been giving me a greater desire to study the Bible. I have had the book When I Don't Desire God How to Fight for Joy by John Piper since Christmas. I read a chapter of it, then set it aside so that I could read a book by Phillip Yancey. As has happened in the past, when I would need the information, God developed the desire in me to read John Piper's book. When I Don't Desire God, has chapters on how to use Bible study and how to use prayer in the fight for joy. Also, there is a chapter on scripture memorization. So it is just what I need to read now. Thank you, Father, for getting me the book I would need.

Lastly, I have joined Bible Study Fellowship, BSF. They are studying Isaiah this year. We have homework every day and meet together once a week. It's a great study, and I have a friend who has been in BSF a few years. She really enjoys it and has grown so much. I can see the change in her, and she is much happier. God is meeting her needs and meeting her in a variety of places. Like at a shoe store, but that's another story.

A quote from John's book- I also saw, moreover, that it was not my good frame of heart that made my righteousness better, nor yet my bad frame that made my righteousness worse, for my righteousness was Jesus Christ himself, "The same yesterday, today, and forever." Now did the chains fall of my legs indeed. I was loosed from my afflictions and irons; my temptations also fled away; so that from that time those dreadful scriptures of God [about the unforgivable sin] left off to trouble me now; now went I also home rejoicing for the love and grace of God.

John Bunyan Grace Abounding to the Chief of Sinners

Off to the Oncologist Today

2010-09-07T12:19:00.000-07:00

Hi!

Thank you for your prayers! I am much calmer in this flood of problems than I was a few years ago in a similar situation. Then I went through a time where many things were breaking down, I damaged my car, and my relationships were a mess. After that time I was closer to God.

This time I have had cancer problems twice in the last week, then I broke my foot on Wednesday, September 1st. I can't get a cast on my foot until Friday, Sept. 10th because the orthopedist was on vacation. Then Spunky our beagle (who is a cutie pie) has gotten so sick from his food allergies that he is tearing up his skin by licking at it, and Saturday he got stung by an insect. He went to the vet and got 3 shots, plus now he is wearing an Elizabethan collar so he cannot lick or scratch. He is not a happy camper, but today he feels better. He can move along at a normal rate of speed, and his eye does not look infected anymore. The good thing for him is that I am cooking him yummy chicken and rice, because those are two things that are safe for him to eat. I am having problems with one relationship, but another one may be improving. I cannot exercise at all or take Spunky for a walk because of the broken foot and a pinched nerve in my back.

Saturday September 12th is my 40th class reunion, and I will go as a fat little porker on a walking cast. Tomorrow I had better start trying on clothes to see what will fit. My plan was to spend the last two weeks before the reunion walking 4 days a week and going to Curves 3 days a week. At least I could firm up some muscles and and eat less sweets. So far that has not happened, but I'm not really upset. What can I do?

All I can discern right now is that God wants to order my steps. Also, I'm praying first thing in the morning because I cannot go out for a walk. So my priorities are being rearranged.

Because of your prayers and my maturing, I am not wondering, "Why is God doing this to me???" I have been through a period of hard times before, and it wasn't God attacking me. He was growing me. Some events are also the normal progress of life; we are older so bones break easier. Doctors take vacations. I need to be patient. I am so lucky that I am not working. I wrote that the months of June and July were halcyon days, realizing those times are very brief. I enjoyed them and I thank God for them. It is wonderful to get to relax and enjoy the beauty of the Earth. (I will write a blog on the pursuit of Beauty. Until reading John Piper and the Eldredges, I never realized it was of God. )

I am remembering an old hymn. It goes something like this:
"For the beauty of the Earth, for the Glory of the skies
For the love which from our birth over and around us lies.
Christ, our God, to Thee we raise, this our hymn of grateful praise."

At the beginning of this blog I wrote out the lyric of "The Glory of it All" for a reason. The song says that God does not change. This song was a huge comfort to me on the day I realized my cancer was not curable. It comforts me now when I don't understand what is going on with my cancer. I will ask the oncologist today to increase my dose of Octreotide. On Sept. 2 I had another unexpected bout with diarrhea, just 3 days after the last one. I didn't eat anything that would cause me to be sick and pouring sweat in the middle of the night.

"At the start He was there, He was there. In the end He'll be there, He'll be there. And after all our hands have wrought, He forgives....All is lost, Find Him there, Find Him there. After night, Dawn is there, Dawn is there. And after all falls apart, He repairs, He repairs."

Am I Descending Into the Pit?

2010-08-31T19:46:00.000-07:00

Caution: This blog contains graphic details about the symptoms of carcinoid cancer. I am going through another crisis, and I need prayers. Not a crisis of faith, but a physical crisis, as my symptoms are increasing and my oncologist isn't catching on that things are noticeably worse.

Greetings from the Southland! I am now officially retired; other teachers are getting up early to go to work, but I don't have to get up early any more!!! I do get up by 8:00 am on most days and go for a walk in the morning.

Today I was having a great morning. It was sunny, but not hot, when I set out to walk a mile at 9:50 am. I headed a block north with the cat in the house sleeping and the dog in the backyard looking for lizards to chase. I would be back in 20 minutes to shower and get ready to leave for the Cancer Center at 11:30. It was a really lovely day.

I was one block from home when I felt like I needed to use the bathroom. A few more seconds and I realized it was a carcinoid problem. (A carcinoid problem is very urgent) Another second and I realized that I needed to turn around NOW. I was sick when I got back to my house, and was afraid to go on and continue my walk. I was ill until 1:00, including a detour off the 91 Freeway to stop at a Carl's Jr restroom.

Carcinoid cancer is characterized by diarrhea. Also, my face flushes pink, and I get surges of heat that spreads over my head and shoulders. As my long-acting Octreotide shot wears off, the symptoms break through.

This month I have been sick with diarrhea twice in public places. (This has never happened before.) The previous time was just 12 days ago when we were moving K into the dorms at college. I dashed into the restroom in Metzger Hall instead of going to the cashier with a check. By the grace of God, I had brought a change of clothes because I thought I would get grubby helping carry boxes into K's room. I called my husband from the restroom, and he brought me the clothes.

For the rest of my life, I will now have to carry a change of clothes with me every time I leave home. I don't feel safe anymore.

I have read accounts of carcinoid patients on Cancer Compass. I have read the letter of a wife asking what more can be done for her husband whose diarrhea now lasts all day and all night. I have seen a photo of a carcinoid patient sitting in his wheelchair unable to hold his head up anymore. Metastatic carcinoid is not curable. No one wants to go through this. It is a descent into the pit, and it looks like my descent is starting now. I have wondered when this day would come for two years.

When I was at the oncologist's office today, he did not want to increase my prescription of Octreotide. He wants to leave it at 30mg a month because that is the amount used in the PROMID study that we are following. He wants me to take Imodium or Lomotil if I just have diarrhea twice a month. He doesn't consider it a very bad problem.

Here is the problem. Lomotil or Imodium is taken after a patient already has a bout of diarrhea. If my diarrhea begins while I am out in public, it is already too late. I need to be protected from public humiliation. I'm not ready to go into that pit yet.

Luckily, my doctor is having me come back in one week. He wants to see how I am doing. If the medications don't work, he will consider increasing in Octreotide to 40mg. I also need to suggest that he measures another cancer marker in my blood. For several months the Chromogranin A in my blood has been going down to extremely low levels. However, for 3 months my symptoms have been increasing. I have information about Lanreotide, another marker we can check.

I need prayers that the oncologist will consider this other blood test. I am also getting concerned that we need an Octreoscan to see if the tumors in my liver can been seen. I keep having increased symptoms, but nothing shows up in scans. I want an Octreoscan, even if that temporarily raises my Chromagranin A levels. I have this fear that I still have the tiny tumors, but they may be increasing in number while staying very small in size. If the tumors were getting bigger, they would show up in an MRI. They don't show up, but I keep getting sicker. Maybe there are dozens of tiny ones.

Please, Father, help this to work out.

I had a Cool Dream

2010-07-31T21:54:00.000-07:00

Hi! How are you doing? I'm doing fine.

I had a dream two nights ago that I want to write out. It was unusual because the interpretation of the dream came to me just as I woke up. It was like God told me right away so I would not wonder. Also, this dream had more color, more pageantry, and more mystery than usual.

I was in the court of Charles I of England. At first I wasn't sure what I was doing there, but I could walk freely about the palace, and I wasn't a serving wench. I wasn't a lady-in-waiting to the Queen, either. I seemed to be rather middle class, but I lived in the palace. The King knew who I was; he spoke to me pleasantly one day and smiled at me as he passed by.

I remember thinking in the dream that being in the court of Charles I was not such a good idea, because he was beheaded later. But nothing bad happened during the dream; I was just trying to figure out what I was doing there. All the palace was abuzz getting ready for a big party. Plans were laid; fabric for gowns was bought. I was concerned about visitors being able to wander all over the palace; and discovered I had a key to lock the door to my room. That was cool. I also had my own room. It was about then I decided that I was a teacher of the girls in the palace.

The day of the party arrived. This time I saw Charles II. He asked me if I knew what he was saying in Latin. I apologized for not knowing, and explained that it had been so many years since I studied Latin that I had forgotten. He explained to me what the phrase meant.

Sometime after the party I figured out what was going on. It was like I had amnesia about who I was and how I got there. It turns out that my family was from the Northeast part of England. (Just below Scotland.) We were a seafaring family. I saw a map in my dream showing the area where we had land and our ships sailed. My father was a local nobleman and had some business on the seas. He found out where I was and was coming to get me.

Now I got to get all dressed up like one of the noblewomen in the palace. All my clothes were ivory-colored. I had an elaborate ivory curled wig. I got to wear a gown with beautiful lace and I got to walk down the front stairs. In the earlier part of the dream, I had to go up and down the back stairway.

Finally, my dad came to get me. His carriage was in front of the palace, and he was waiting at the foot of the stairs. He had a coachman and two other attendants with him. I got to descend the beautiful curving staircase, and get into the coach to go home. The story had a happy ending.

As I woke up I thought, "I found favor with the King, and my Father came to take me home."

I don't think there's any rush on God coming to take me home, but this was a neat way to envision it.

(Isn't it odd how we have dreams inside of a dream? While I was having the longer dream about being in the court of Charles I, I had a short modern dream about shopping for clothes. When the women were getting their gowns ready for the party, I was in a lingerie boutique shopping for things with beautiful lace on them. I didn't find much until the last second of that dream. Then I got to use lace when I had my gown made. )

Halcyon Days

2010-07-20T00:43:00.000-07:00

Saturday was a great day. We celebrated the wedding of my Dad's oldest grandson, Andrew, the first grandchild to get married. The groom is 25 and has been living with my Dad for nearly 6 years since my mother died. He married a lovely woman he met 5 years ago. So everyone's happy!

The bride and her family put on a terrific party, and it was a beautiful setting at the University Club at UC Irvine in Southern California. The ceremony was outside surrounded by trees, and the reception was inside a large room with huge windows so we could enjoy the view. We have been looking forward to this wedding for a year, and it was great. It's wonderful to see a couple who have grown into their relationship, and are ready to take the step into marriage.

So these are Halcyon days! Everything with me is fine. My cancer is manageable, and I'm glad not to spend my evenings feeling tired out. I began writing on my book last night: I'm cementing the offspring of my first Lazzieur family. Now I need to locate the photos I took on a trip to Maryland about 7 years ago. I will find them; it just takes time.

Thank you for your prayers! You are one of the reasons I am enjoying these great times. God is giving me a rest before He lets me know what he wants me to do next, and I am accepting that.

Sharon

I'm Having a Good Time!

2010-07-06T20:47:00.000-07:00

Hello!

I'm having so much fun, I haven't written for a month. My daughter, husband, and I went on a trip to Tennessee for 8 days and returned one week ago. That followed a party that we gave to celebrate our anniversary, K's graduation from high school, and my retirement from teaching.

Since Monday I have been printing photos (dating back to December 2009) and creating posters and albums from them. Tonight I promised myself I would not do that. #1) It keeps me up until 3 am because I'm having such a good time and trying to get things to come out right. #2) I have to deal with the real world and get my bills paid. Most of my bills are all due by the 11th of the month. So I will be brief.

Today I had my cancer treatment and saw the oncologist. Things continue to go well. I still have symptoms of flushing and odd digestion, but he has decided that's just how my body deals with this stage of my cancer. Some patients are confined to their bedroom and bathroom most of the day, so I can't complain. I am in fourth stage cancer. Amazingly, my Chromogranin A was at 7 last month on the day when it should have been at its highest. (That's the day before I get my treatment.) So even when I try to look for trouble, I can't find much.

I will just give up and accept that God is letting me stay well for months. Having cancer keeps me waiting for the other shoe to fall, but maybe I should just relax. Praise God.

Health Update June 2010

2010-06-06T13:13:00.000-07:00

Hi,

I haven't said much lately about my cancer. It is back to letting me know that it's here. I have more flushing- a few times a day. I was going weeks without seeing flushing just a couple months ago. I also sweat profusely from my scalp, usually in the mornings. My digestive symptoms are coming back, with a little nausea, and when I go to the restroom expecting only urine to show up, I get something extra. That's normal carcinoid cancer.

When I would read about carcinoid a couple years ago, some writers would make the distinction that diarrhea includes more frequent stools. That's a good point to make with respect to carcinoid. In fact, that was my first symptom. When it continued more than one week, I made a mental note of it, but didn't say anything to my doctor until I had developed symptoms as if my bile duct from the liver was blocked. Then it turned out that the symptoms were related.

My last Chromogranin A was 15.3. I am going to have it done on Tuesday morning, June 8th, to see what it is at its highest. Then I will go in and have my treatment that afternoon. I will see if my numbers have gone up higher. The 15.3 was done halfway through the month after my injection of Octreotide. That might have been considered an average CgA for me, but this one will be at the time CgA should be the highest.

[I forgot that I need to explain Chromogranin A to new readers. CgA is the marker put out by carcinoid tumors. A number below 50 is normal. I have been below 50 for several months by God's grace and His blessing on my medication.]

I'm continuing getting ready to retire. I filed my form with the school. I completed the PARS packet to get the Early Retirement Package--which was appoved, Thank God! I will get an extra $30,000 spread over the next 5 years. The union had a retirement dinner Friday for 74 retiring teachers. Last year there were only 12 retiring. So we are keeping 74 more jobs in our district.

I feel very good about retiring. This is the beginning of the next chapter of my life.

Love,
Sharon

Life is Changing

2010-05-23T00:00:00.000-07:00

May 22, 2010

I read the book Captivating several years ago. I remember getting to a section near the end of the book and feeling my eyes fill with tears. It occurred when Stasi Eldredge wrote about a friend named Tammy. This is how it goes:

“My friend Tammy has been a leader in women’s ministry for decades. She is a gifted woman, totally sold out to God. And a few years ago, God invited her to come away with him and sit at His feet. Alone. He called her o leave her position on the church staff. He called her to quit leading her small group, her Bible study, her accountability group. He asked her to become a woman of “one thing” – to become a Mary, a woman devoted to worship. To minister to the heart of God.

Tammy chose to say “yes” to God and followed his lead into the sacred realm of his heart. Her friends thought she was nuts. The church leaders chastised her publicly for abandoning the Great Commission. She was accused and misunderstood. It hurt. But God had captured Tammy’s heart and has been capturing it ever more deeply since. She has been captivated by his beauty. And his radiant beauty shines forth from her countenance.

Tammy became a worshiper, and her life of pouring her adoring devotion onto Jesus has become a beacon and a call to countless women to do the same—to attain to the high and holy calling of ministering to the heart of God and to discover ever more the treasure of who he is.”

At the time I read this, I had never heard of ministering to the heart of God. I didn’t know God needed or wanted that. Since then I have sung two songs that mention the heart of God, but it’s not discussed in Bible study or sermons. So I emailed my pastor, and he wrote back confirming what it meant to be a person of one thing. It was a real option—not just something Stasi made up. (That's a joke.)

In the last five years, I have returned to that passage a few times and felt the same yearning each time. I would get tears in my eyes. When I read tonight, though, there were no tears. I don’t have to yearn for this anymore. I can do this now. I am going to retire from teaching middle school, so I can worship God the way I want to worship Him.

During the last three months, I have felt concern over not being able to use my gifts of healing and prophecy. They seemed to be dormant. Then recently, we have been praying for each other during our church services. I have begun to feel revived again, and I’m back at the front of the church singing, so that I can’t do anything except worship Him.

When I prayed about wanting more of Him, God told me it was my ever-more-demanding life as a schoolteacher that was keeping me from worshipping Him the way I wanted to worship Him. I can’t get down on my face and praise Him in the morning without being late to work. I don’t get enough sleep during the week to get up any earlier. And I have the weird idea the living things in my house have higher priority than paperwork. It’s time to retire.

My school district helped by proposing an Early Retirement Incentive Package and giving me medical insurance until I turn 65. The decision was easy to make, and I have been very happy with it.

Therefore, since we are surrounded by so great a cloud of witnesses, let us lay aside every encumbrance, and the sin which so easily entangles us, and let us run with endurance the race set before us, fixing our eyes on Jesus, the author and perfecter of our faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God. For consider Him who has endured such hostility by sinners against Himself, so that you may not grow weary and lose heart. Hebrews 12:1-3.

I'm Making a Big Change

2010-05-16T21:23:00.000-07:00

Hi!

Many things have changed in the last 12 days. The school district I work for offered an Early Retirement Incentive Package (ERIP). If it goes through, this would offer me more money per month after I retire. It's not a great offer. My principal said it's not a Golden Handshake; it's just something to help some of us to retire a year or two earlier. I would have to work another year to reach the amount of income that I would receive from the incentive package.

Also, my health benefits would continue for 8 years. That's not in the ERIP, that is in our Collective Bargaining Agreement. Boy, an I glad I'm a union member! If I wasn't, I could not qualify for the ERIP or the health benefits. It more than compensates for all the months I've wondered what my $93 was going for.

So, I am going to retire. God has been calling me and changing my heart since April. I would leave today. I never would have said that before. I believe this is the time He was waiting for when He told me 5 years ago, "I'm waiting for you."

I look forward to a time of rest and contemplation as I await God showing me the way I am to go. I have the advantage of having Joyce Meyer's account of how she changed from being a minister in an established church to having her own ministry. I don't plan to do what she did, but it's good to see how someone went through a similar situation.

I love these verses: Job 23:8-10.

But if I go to the east, He is not there;
if I go to the west, I do not find Him.

When He is at work in the north, I do not see Him;
when He turns to the south, I get no glimpse of Him.

But He knows that way that I take;
when He has tested me, I will come forth as gold.

All the Best!
Sharon Joy

Things are OK

2010-05-02T19:54:00.000-07:00

Hi,

I seem to be OK, but I have to be really, really careful not to raise my blood sugar. My blood test came back with a fasting sugar of 97 and a 2-hour sugar of 126. Those sugars are not diabetic, but the doctor checked something called Hemoglobin A1c. That's a new test that shows what my blood sugars were during the last 6 weeks to 3 months. My reading was 6.1, and diabetes is at 6.5. So I cannot risk raising my sugar any higher. I am continuing to get thinner.

My physical therapy was approved! When I was discouraged last month, I said I wouldn't start until June, but I got in on April 30. Thank You, Father for working that out. I have the same sweet physical therapist at Brockton physical therapy. It's going to make it hard to go to Curves twice a week, but I will try.

I saw a list of doctors in the last 10 days. The cardiologist wants a stress test done because I finally remembered to tell him how I can't climb three flights of stairs anymore. Somehow it was significant to him that I literally can't go any farther than 2.75 flights without having to stop completely. He kept asking me if I would get out of breath, and I said it was as if I run out of gas and cannot even go one more step.

My cancer symptoms are so minor that my digestion has changed. How do I put this delicately? Carcinoid is a digestive cancer, and diarrhea is a normal symptom. I'm taking Sandostatin (Octreotide) injections to counteract the tumors. Evidently, the drug is suppressing the tumors so well that I have to change my diet to to compensate. I've been eating Fiber 1 cereal for months. Now I'm eating the Fiber 1 granola bars, too. The chocolate and oat ones are my favorite. With 10 grams of sugar, they are going to become my favorite dessert.

So now cancer is the least of my symptoms. I wonder how I will be able to tell when I am healed?

I saw the Lord always before me,
Because He is always at my right hand,
I will not be shaken.
Therefore my heart is glad and my tongue rejoices,
My body also will live in hope.
Acts 2:25-26

Sharon

Carcinoid Update

2010-04-17T15:55:00.000-07:00

On Tuesday, April 13, I went to see my oncologist for my regular check-up and I got my treatment. My cancer symptoms have been mild for several weeks, and my numbers from cancer markers have been low. I don't even seem to be red-faced very often--which used to happen several times per day. So everything looks good on the western front. I know my Dad will be glad to hear that.

Dr. Z, the oncologist, showed me the MRI results in the database. He wanted me to see how good the pictures were. They are very clear and show organ by organ what is going on in my body. They give a more accurate look at what is happening than using a CT scan. He said those scans are not as clear. Seeing the quality of the pictures reassured me that things are probably OK. In a recent blog I expressed my frustration with not being able to see my micro tumors, but maybe God is healing them, so I should just shut up.

On the fasting blood sugar for Dr. Z (drawn April 5), I was at 107. That's much better than being at 121 on January 27. I have been avoiding sugary food as much as I can.

In the morning of April 13 I had the blood test run for diabetes. The sugar levels came back as OK. However, my internist also checked for Hemoglobin A (I think that's the right letter.) It was high enough to indicate that I am at high risk for diabetes, so I'll have to do an even better job at avoiding sugar. I will have to go to Curves again. That means I will have to leave school at 3:30
like i used to, in order to have some time and energy to exercise. I don't know where the energy will come from, but I will start out slowly.

Dr. Z looked up Octreotide, which is used to treat carcinoid, and found out that it raises blood sugar. So the drug that keeps me alive, may make me sick. I will still work on preventing diabetes. Like I said last week, I don't need another condition to juggle.

My neck pain is much relieved--Thank you for praying. All thanks to our God and Father for His healing hands. Right now my lower back is doing weird things that make it hard for me to straighten up after sitting, but I know we can fix that in physical therapy.

Love,
Gardener Sharon It is a beautiful day today!

I Don't See Him Shining on My Face

2010-04-12T11:42:00.000-07:00

On Friday evening my family went to the "Rock and Worship Road Show". The featured acts this time were Fee, Family Force Five, Francesca Battistelli, David Crowder*Band, and Mercy Me. It was a really great show. I enjoyed Fee even though I had never heard them before. All their lyrics had a great message. There were a couple opening acts - Sidewalk Prophets being one- with inspiring songs, too.

I really went to see Francesca Battistelli and David Crowder*Band. I bought a book by David about living in the mode of seeing God everywhere, and Francesca's revamped CD. She has an acoustic version of "Beautiful, Beautiful" accompanied by conga. I'll have to learn to play along.

A few months ago I wrote a blog "Although It's Pouring Down I can See You Through the Clouds (Shining on My Face)." That is a line from Francesca's song, "Beautiful, Beautiful." It's a beautiful song. The problem is that I'm not in that mode any more.

My cancer is OK, but my other ailments are thriving, and I don't see God shining down on me through the clouds right now. Not for a few weeks. The pain from the degenerative disk disease in my neck is as bad as it was before I was ever treated for it. I have been waiting a month to see the rheumatologist just so he can prescribe physical therapy again. I'll probably won't get to start therapy until June. The damp weather is helping to keep my arthritis painful. It is spreading through my right hand a little more every week making it harder to hold on to things. My right arm and my hips have arthritis pain.

I went to bed Saturday night with joint pain and woke up with the most incredible headache. It turned out to be a virus that made me very sick on Sunday. It's Tuesday now, and I'm better.

When I saw my dear internist on Thursday he was concerned about the episodes I've had with high fasting blood sugar and high blood pressure. I'm doing the two-hour blood test for diabetes right now. I had fasting blood drawn, then I came home and ate pancakes with syrup. I go back soon and have more blood drawn. My internist and I are both concerned with how I can possibly juggle two more medications, if I have diabetes and High blood pressure. He was asking me if I could stop taking one of the meds for Sjogren's Syndrome.

Lately I've been wondering if I can renege on my promise that God could take my health in order to keep me in His perfect will. I can still stay in Your will, Father, without so many illnesses. When I made that promise I saw myself fully cognitive, lying in bed praying, but not able to get up. Sunday I hurt so badly I was lying there just praying, "Father help me. Father, help me." Not a deep conversation.

However, on the way back from my first blood letting today, I listened to more of Francesca's CD. My attention was caught by lines from the second verse of her song "Time in Between"
(c. Francesca Battistelli and Clint Lagerberg )

"Don't take much for this crazy world
To rob me of my peace
And the enemy of my soul
Says You're holding out on me.

So I stand here lifting empty hands
For You to fill me up again.

But it's the time in between
That I fall down to my knees
Waiting on what You'll bring
And the things that I can't see."

So that's where I am now. My illnesses have robbed me of my peace, and the enemy says God is holding out on me. I am standing here holding up empty hands to be filled again. Well said. How can someone in her twenties be so wise?

I also listened to "Lead Me to the Cross" by Brooke Fraser-Ligerwood. On the line that says "Lead me to Your hea-ah-ah-ah -ah-ah-ah-ah-art", I pictured myself going up to Jesus and resting my head on his chest over His heart, and He put His arms around me. That helped. It is amazing how a visualizaton like that comforts me.

Sharon

I am the Scourge of Crabgrass, The Defender of the Iris

2010-04-12T09:55:00.000-07:00

By the time you get to the end of this diatribe you will find the moral is: 1. I can't fix everything, but I can fix some things. 2. We can work to make some dreams come true.

Crabgrass. Really. This began several years ago when the crabgrass crept through the fence from the yard to the east. At first it was content to stay in the planter, but it has slowly moved into the fescue on the east. A wall went up between the two yards, but the crabgrass remained.

Every year K or I would pull out crabgrass, spray it, or rake it unto some form of submission. The planter with crabgrass is also home to daffodils and jonquils in their season. At one time I had 12 irises there, but the irises lost the battle to the weeds. One huge clump of yellow iris remains, and a tiny rhizome* is making a comeback. I'll have to wait and see what color it is.

Last November I launched an all-out attack on the dreaded weed. Since the narcissus were beginning to come up, I couldn't start with Round-up and kill everything, so I used a weed spray that said it was particularly effective on crabgrass. I used it again the next month. The weeds began to die out from the weedkiller and because it was winter. So I did my first round off pulling weeds out. The planter looked better. I sprayed some isolated areas with Round-up in January and pulled out more dead weeds.

I'm writing of a planter that is 5 feet deep going back to the wall and about 10 feet long. After three months of work, the back 18 inches didn't have anything growing in the dirt, just dried remnants of old crabgrass. Areas of green weeds just remained next to clumps of daffodils and iris because they had been getting food and water there. On February 2nd, I began the first round of pre-emergent crabgrass killer on the planter and the grass. The second round was 6 weeks later, just like the directions say.

So far this has been successful! Last week on my spring break I pulled out the traces of antique weeds from the planter and replaced them with 35 gladiolus corms (bulbs to you). I also added two clumps of pale blue iris. I know iris are blooming now, and are not being planted in California at this time. However, Home Depot was still selling them, and I felt like giving it a try. (We have had lots of rain this year. It rained last night and it should rain one week later.) One of the rhizomes* was large, and I think it will live until next spring and bloom then.

The moral of this is: When I can't fix everything, I can fix some things. The day I put the winter fertilizer with the pre-emergent crabgrass killer on my lawn, I was extremely discouraged about my job. Our school has been in Program Improvement for four years, and the pressure to raise test scores is very strong. Every emphasis is to help students do better on the state tests. And the students don't care nearly as much as the teachers. That really bites. I'll have 8 students in one class who don't want to strain their brains. They want to make the teacher tell them all the answers.

Therefore, it helps to come home and takes steps that I know will work to improve my yard. That's one reason I love to garden; I always see results. I can make some things happen.

Also, one year ago I wrote in this blog about dreaming that my backyard was a bower of flowers. It was a night when I thought God was mocking me by showing me all the things I had not accomplished. When I told Richard about the dream he said we could make my dreams come true. So we have spent a year planting and refining the backyard. It should be very nice for our anniversary party to which you are invited next June 19th.
* rhizome: the root that irises grow from. I think it's technically an underground stem.

MRI Adventures

2010-04-01T20:33:00.000-07:00

Hello,

I had an abdominal MRI done on Monday evening earlier this week. The oncologist and I decided to do an MRI because a CT scan exposes me to more radiation. An Octreoscan (the specialized test for carcinoid) requires that I stay off my medication for 3.5 days until all the scans are done. That makes my tumors grow, and I develop more symptoms. Also, these tests usually show NOTHING of my cancer. We thought an MRI would show slightly smaller growths than the CT does.

It was all to no avail. The MRI came back negative--no mass was found. I have microcarcinoids--they are about 0.7millimeters wide. The MRI might have shown a growth 0.5 cm wide. My doctor said a CT scan can detect growths about 0.7 cm wide--ten times wider than my tumors. So I'm still the woman with the invisible cancer.

I hate this. Why couldn't I have regular carcinoid cancer? At least the growths would be between 1 and 10 cm, and a doctor could see them. A surgeon could take aim at them with an embolization needle and kill them. Or at least cut off their blood supply. So my tumors remain untreatable except with drugs.

The good part is there doesn't seem to be anything wrong with my pancreas--no visible growths. So the elevated blood sugar that I had in January is probably because of my diet and heredity. Plus not being strong enough to exercise. So I'm not being invaded by a rapidly growing pancreatic neuroendocrine tumor.

I'd just like to be like other cancer patients who can look at a scan and see their cancer. I would like to know if I have two tumors in one small space, or forty tiny tumors sprinkled across my whole liver. It seems easier to understand an enemy you can see.

I do have cancer.
I know because of the symptoms that went away after surgery, and came back two months later.
I can tell every day when I look in the toilet.
I can tell by the symptoms I develop when I don't get my medication.
I can tell by the cancer markers that go up and down.
I can tell by this pain in my chest behind the right ribcage.
I can tell by my fatigue.
I do have cancer, but no one can see it.
I hate this.

It seems as if having the MRI done this week was just to show me that I can do one more thing through Him that strengthens me: I can drive myself to and from a procedure where I was enclosed inside a tube that was only five inches wider than I was for 45 minutes and remain relatively calm. (Is that a run-on sentence?) It is all done through God who strengthens me.

Thank you to everyone who prayed for me or sent emails to me. Thank you to Paul , the technician, who was so calming and played my Cd for me.

While I was in the MRI tube I thought of the verses from 2 Corinthians 12 because I was certainly weak and not knowing if I would be able to stay in the MRI for more than a few minutes. I have gradually gotten over some of my claustrophobia after undergoing 4 or 5 Octreoscans where the plates are only about 4 inches from my face. I hoped that calmness would transfer over to the MRI. It seemed like a perfect opportunity for God's power to be perfected in weakness since I was pretty weak. And God did see me through.

And He has said to me, "My grace is sufficient for you, for My power is perfected in weakness." Most gladly therefore I would rather boast about my weaknesses, that the power of Christ may dwell in me.Therefore I am well content with weaknesses and difficulties for Christ's sake; for when I am weak then I am strong. 2 Corinthians 12: 9-10 The Open Bible, NAS

Love,
Sharon Joy

I Really don't Know How I am, but I'll Find Out

2010-03-19T23:12:00.000-07:00

Hello,

I haven't said much lately because I've been in a waiting mode again. Mostly of the time I've felt OK, even felt good. However, I have to have an MRI to figure out what's up with this pain I've had behind my right ribcage for a few months.

When I had the first two tumors I had a little pain behind ribs on the right side. The tumors were removed three months apart, and I had a distinct little pain with each. Each pain went away after each surgery. The only one who seemed to give it any consideration as a symptom was my internist. He just suggested that we wait and see if it would go away after the surgery, and it did.

The new pain is about 2 inches higher up the rib cage, and it's not always there. It was not there on Tuesday when I went to see my oncologist, but came back that evening when I was doing some work around the house. This time the doctor is seeing the pain as a possible symptom, and has scheduled an MRI for March 29, a Monday, at 5pm.

I don't have to take time off for the scan, but I might anyway. It's in an enclosed MRI at the UCI Med Center; they don't have a closed MRI. I'm claustrophobic. The last MRI I had done was of my back at an open MRI in Corona. That was the quietest MRI I ever had. Half the problem with the procedure is the loud noise making me feel like I am under attack. So I just might take the day off so I can spend time in prayer and do lots of stretches to get ready for lying on my back for an hour.

This month I had my oncologist's visit and my Octreotide LAR on the same day. It worked out expediently because I ordered my shot at the Infusion Center so it could be thawed out in the pharmacy. Then I saw the doctor, and came back to get the shot 45 minutes later. So I was on the 57 Freeway at 3:55. I got home at 5:10, so the timing worked out very well.

I didn't have any labs done, since I just saw the doctor three weeks ago. My blood pressure was 138/81 and 144/78 while I was there. I have been eating much less sugar for 5 weeks now, and that may have helped lower my b.p. I have to have fasting blood work done again for both the cardiologist and oncologist in two weeks, so I will see if my sugar has dropped very far.

My weight is staying between 138 and 140, so I have lost at least four of the pounds that I gained in the last year. I'm quite sure that my triglycerides will be noticeably lower; partly from the diet and partly from a higher dose of statin drug. My doctor will probably credit the drug: he has been determined to find one that would not have bad side effects. I wish I could go back on diet and exercise to lower my cholesterol again, but I don't have the strength.

I can do all things through Christ, who strengthens me.

Love,
Sharon

Ask a Question, Get an Answer

2010-02-27T16:18:00.000-08:00

Hello,
Last week I was wondering why I was tired when my cancer markers are so low. I think I have an answer. When I had my routine bloodwork done, my fasting blood sugar was 119. For the last few years it has always been 95-99. I don't know why it would make such a big jump in only one month, but I will be eating much less sugar this coming month.

It makes sense now (3/3/10). When I went in to have the fasting bloodwork done(Jan. 27), I was not feeling well. In fact, I had taken two days off. I didn't know what was wrong: I was very tired and didn't feel like I could teach my class. Now I know that I didn't feel well because my blood sugar was too high. At the time I thought maybe my tumors were giving off lots of chemicals. Instead the labs showed just the opposite; all my cancer numbers are great!

For a year I have been weighing 10 pounds more than usual. I guess that has put a strain on my pancreas, or else it was just a matter of time. My younger sister, mother, paternal grandmother, and grandma's brother all had diabetes; so it's on both sides of the family. Also, I bet one of my many medications can raise blood sugar. I have one that can raise blood pressure. Soon I'm going to have more than 10 medications.

At any rate, I praise God that my cancer markers are very low! My Chromogranin A is only 8.8. I must have lacked faith in Him last week when I thought my cancer can't be so suppressed, even though the numbers were. So I give Him glory! He is shrinking my tumors. As Karen D. told me, with cancer you learn not to get too excited at the good news or too down about the bad news. Right now cancer doesn't seem to be the big problem. I have to get my sugar levels down.

Two years ago, having found out about carcinoid cancer and fibromyalgia and having had Sjogren's Syndrome for 23 years, I asked God, "Are you going to give me the world's longest list of obscure diseases, with the world's mildest cases of each?" I was laughing. I would still go with the worlds' mildest case of each, but now I think the list is long enough, Father. Your grace is sufficient for me. I'm st not sure I'm sufficient for all these diseases.

Three times I pleaded with the Lord to take it away from me. But He said to me, My grace is sufficient for you, for my power is made perfect in weakness. Therefore, I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12:8-9 NIV

Love,
Sharon Joy

My Labs are Fantastic! So why am I so Tired?

2010-02-23T21:20:00.000-08:00

Hi,

I went by Dr. Zell's at UCI Med Center today and got my latest lab results. They are so incredibly good! My Chromogranin A is 8.8 ng/mL. That is totally normal. In fact, the Doctor said it was suppressed. We have been happy because I've been having CgA numbers lately between 20 and 50 ng/mL. This is unbelievable. Praise God!

We have been following the amount of gastrin in my blood because the tumors seem to be gastrinomas. All my other values have been 138, 200 (non-fasting), or 600 (non-fasting). Normal fasting gastrin is 100 pg/mL or below. My fasting gastrin is down to 30 pg/mL. In January we checked the serotonin level in my blood, because too much serotonin in the blood can attack the heart valves. Normal serotonin is 26-165 ng/mL. Mine was below 10 ng/mL; too low for the reportable range. So I guess my heart is safe from attack by serotonin.

Today the doctor and I seemed to be on the same wavelength. I was telling him about the symptoms I've been having: diarrhea the day before my treatment; a feeling of fullness in the upper right quadrant of my abdomen; and a dull pain in the same quadrant. He said he had been wanting to get some images, since we have not done any nuclear medicine scans since August 2009, and he suggested doing a MRI. Unlike the nuclear medicine scans, an MRI does not require me to go off my medicine and it exposes me to less radiation than a CT scan. He had obviously been thinking about doing the MRI before I got there. He said we can use it as a baseline scan if nothing shows up regarding the symptoms I'm having. That sounds fine to me!

My next appointment is in three weeks. Dr. Zell said it takes about one week to get the approval from insurance, one week to schedule the MRI and one week to get the results. So I have my next doctor appointment and my LAR on March 16. I can race over to the Medical Center as soon as 5th period ends and get there on time.

So why am I so tired? I don't know. All I can think of is stress from my job. We have our district assessment on March 5 and there's lots of pressure to help the students learn to read and write better for the CST (state testing) at the end of April. I was surprised how much more relaxed I was after the district assessment was over last fall. I was much less stressed. I bet my blood pressure went down that week.

Romans 5:1-5
Therefore, since we have been justified through faith we have peace with God through our Lord Jesus Christ through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only this, but we also rejoice in our sufferings, because we know that suffering produces perseverance ; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our heartsby the Holy Spirit, whom He has given us.

Finding Encouragement on the Internet

2010-02-20T14:17:00.000-08:00

Hi,

I'm getting through the month of February OK. I went in for my cancer treatment on Wednesday: 30 mg of Octreotide shot into the hip. It was discouraging because I got sick from cancer on Tuesday night. Carcinoid has its own peculiar type of diarrhea. It's a sign that my medication isn't as effective as it was , if I'm getting sick on the 27th day after my last shot. I was sick and in pain for a few hours, but I slept alright.

What helped with my pain was reading an email I got from my Aunt Dottie regarding work in Haiti. I felt drawn to the Internet to find some comfort for myself with my gut hurting--I was looking for another carcinoid patient to connect with, but I checked my email first. Aunt Dottie had forwarded an email sent from Haiti by a volunteer with Radio Lumiere. (Radio Lumiere is a Christian radio station that my Uncle Jim (her husband) worked for in the late 1960's.) The President of Haiti had declared 3 days of prayer and fasting on the one month anniversary of the earthquake! I never read anything about that in the newspaper. I haven't had a chance to watch the news for a week. How wonderful! Everywhere people were gathering in open-air churches to pray and worship! The Americans couldn't understand how wonderful this is in a country where voodoo competes with Christianity. They wanted to go about business as usual.

I prayed that Haiti for Christ would emerge from the ashes. The Christians in Haiti have a strong faith. Praise God!

After that great news, I went to the website for Carcinoid Cancer Foundation. The link is on this blog. I found there was a page listing blogs and websites written by carcinoid patients, and I picked one to read. It's written by a Christian! I was so excited! Actually, it's written by his adult son, but when the man is well enough he write encouraging messages. The blog is DGWhealthnews.blogspot.com. DGW is a former pastor who retired just a couple years ago. He is ill from carcinoid cancer.

That was a blessing. So I felt much better from finding good news on the 'Net.
Sharon

Even though it's Pouring Down, I can see You through the Clouds

2010-02-07T13:56:00.000-08:00

UPDATE:In the last 2 years, I find most people find this post because they are looking for the lyric to Francesca's song. so I am goingto copy the whole lyric in here.

This is a story about a beautiful song and how it helped me through my week.

The number of different things each teacher is being asked to do is steadily increasing month-by-month, and I have gotten discouraged that I can do all of them. Maybe I don't have faith that we can really pull this off. At least, that we can't do it all in one year. I have the feeling that I'm pedalling as fast as I can, but more keeps being added. I have decided to only work 50 hours per week, because any more leads to exhaustion and discouragement.

On Wednesday I felt that way. It's the day I have my drum lesson, and before I left, I snatched up Cd's by Sade, Carlos Santana, and Francesca Battistelli. I play hand percussion, and was looking for new music to play along with. Sade is an old favorite of mine to accompany. When I got to the studio, I handed Butch the Cd by Francesca because I had been listening to it on the way to my lesson.

This is where the beautiful song comes in. It's called "Beautiful" and was written by Francesca Battistelli, Ian Eskelin, and Andrew Fromm. I sang along and played to this for 10 minutes, then went home singing all the way.

" Don't know how it is You looked at me
And saw the person that I could be
Awakening my heart
Breaking through the dark
Suddenly Your grace.......

Chorus: Like sunlight burning at midnight
Making my life something so
Beautiful, beautiful
Mercy reaching to save me
All that I need
You are so
Beautiful, beautiful.

Now there's a joy inside I can't contain,
But even perfect days can end in rain,
And tho' it's pouring down,
I see You through the clouds
Shining on my face

Chorus: Like sunlight burning at midnight,
Making my life something so
Beautiful, beautiful,
Mercy reaching to save me
All that I need,
You are so beautiful, beautiful.

I have come undone, But I have just begun, Changing by Your grace..."

I had more discouragement Thursday and Friday from a student and his mother. He has been not working and has an F. His mom wanted me to email her all the time to tell her what he is doing. I have to write her every assignment that Hosea doesn't do. I won't do that. My policy is that the parent has to email me every week to check on their child. Also, the child has to write down his assignment, and I will sign it. That way the parent can see what needs to be done.
I will not do the work of the parent and the child.

So I went to work singing "Beautiful", and everything turned out alright. I still have to get the parent and child to follow my policies, but I was not so discouraged.

You Capture Me, O, Lord, You Capture Me!

2010-01-23T16:58:00.000-08:00

For some time now I have wondered what to call the change in my life since 2004. My relationship with God has changed so much since then: I love Him best. Before 2004 I wanted my marriage to be the best relationship. It was not. I had to turn to God.

I had asked Christ to be my Savior as a child and grew in knowledge about the Lord as I kept attending church. Later I rededicated myself to the Lord several times as a teenager and young adult. Lately I have been wondering why I never made this commitment to be close to God earlier. Just today I figured it out--with God's help in my worship time.

There has been a change in the sermons preached from the pulpit over the last fifteen years. Perhaps it began earlier. I was looking at my sermon notes from the past, and I can see in the notes from New Hope Church that there has been a definite emphasis on individual Christians having a close relationship with God for several years. Relationships are what has been emphasized. Our relationships with each other as Christians; relationship with the community around us, and others. Most supremely, our relationship with God.

The only name I can give what for happened to me is totally surrendering my life to God. I can remember learning about this as a young woman about to leave college. The youth pastor at my church spoke to a small group of us about giving up our plans and surrendering to what God wanted us to do. I could not do it then: I was afraid. I was uncertain about who I was, and I wasn't sure I could do what God wanted me to do. I feared I would fail in my weakness. I also didn't want to go far away to some uncomfortable place. How sad that I didn't know that God would be beside me and He would develop the strength in me that I needed.

It's also sad that there was no one around I could talk to about this. The youth pastor was about to return home to Texas because his wife was very ill with an as-yet-undiagnosed illness. And I was on my way home to stay with my parents for the summer. When I came back I was in grad school and attending the Singles Sunday School class.

A huge factor in turning my life over to God was alternative Christian music. "I Want a Faith Like That" by Jonah 33 scared me to death, but fascinated me at the same time. I wanted a faith like that, but I wasn't ready for it yet. I knew better than to pray that song as I sang it.

Many other songs that we sang on Sunday by Matt Redmon or Chris Tomlin or Robert Ruiz and others promoted an intimate relationship with God. When I went to New Hope it was my first exposure to contemporary Christian music. LOL: I wondered where I could find these songs, and my then 11-year-old daughter told me to listen to Air1 radio. All the kids knew that; I just had to catch up.

Also, I have to credit the books I read. On the front page of this blog you see books listed by Larry Crabb (The Pressure's Off). He was the first influence leading me to understand that God really does have a plan for us, and it's not the one we wanted. But it will be the best plan to grow us into the person He wants us to be. Larry teaches us that God doesn't guarantee us that only good things will happen to us because we do "the right things". Life isn't like an equation, where if you do A plus B, you get C. God's ways are not our ways. Another helpful writer is John Piper.

This month I found a way to express how my life has changed in Jeremy Camp's song Capture Me.
"You took this life that once was frail
and gave it strength where hopelessness won't prevail,
and life more abundantly!"

"You opened up my heart and made a home in me.
You lifted up the weight the world has placed on me.
You capture me, O Lord, You capture me! "

"Your beauty, Lord, I know it captures me.
Your sweet embrace it brings me to my knees.
You capture me, O Lord, You capture me!"

Glory!

Mary Sitting at the Feet of Jesus

2010-01-23T15:33:00.000-08:00

This is a favorite Scripture passage of mine from when I was a little girl. I have had it as the intro to my blog for a few months. Luke 10: 38-42 (New American Standard)

Now as they travelled along, He entered a certain village; and a woman named Martha welcomed Him into her home.
And she had a sister named Mary, who moreover was listening to the Lord's word, seated at His feet.
But Martha was distracted with all her preparations; and she came up to Him and said, "Lord, do you not care that my sister has left me to do all the serving alone? Then tell her to help me."
But the Lord answered and said to her, "Martha, Martha, you are worried and bothered about so many things;
but only a few things are necessary, really only one, for Mary has chosen the good part, which shall not be taken away from her."

I can remember the first time I heard this story in Sunday School. The teacher had a picture of Mary sitting at Jesus' feet listening to Him. I identified with Mary. I wanted to sit by Jesus, too, and listen to Him.

When the teacher told us that Mary's big sister came in and asked Him to tell Mary to go help in the kitchen, I was wary. I expected the big sister would get her way, and Mary wouldn't get to sit my Jesus anymore. I was sad for Mary.

But then the teacher said Mary didn't have to go and help. She could keep sitting by Jesus! Jesus said sitting by Him was a good thing to do! I was happy. Mary got to keep listening to Jesus; then I could sit by Jesus and listen to Him, too.

I still get tears in my eyes thinking about that. I think it was liberating. Sometimes little sisters got to have their way. Women didn't always have to go work in the kitchen. They weren't second class citizens. Jesus invited everyone to listen.

A Interesting Vision

2009-12-30T00:23:00.000-08:00

Originally written 3/31/09. I have revised this.
Last week I was reading in the book of Job. I went there because I was finishing up writing And Then God 2008. I needed to quote a passage from Job 33:19 and following. The passage starts out being about pain, then moves into healing.

"Yet if there is an angel on her side
one out of a thousand
to tell a woman what is right for her,
to be gracious to her and say,
'Spare her from going down to the pit;
I have found a ransom for her'--
then her flesh is renewed like a child's;
it is restored as in the days of her youth.
She prays to God and finds favor with Him,
she sees God's face and shouts for joy;
she is restored by God to her righteous state."

It says "one in a thousand" may have an angel that mediates for her before God, and God brings her back from being skin and bones and restores her to the strength of her youth.

So I started looking up all the references to angels in God's Heavenly Council. Of course, in Job chapters 1 and 2, the angels are presenting themselves before the Lord, when Satan comes in from walking back and forth across the Earth. There were references about beings coming before God in 1Kings 22:19, Psalms 89:5-7, Isaiah 6*, and others. (This is often how I study new things in the Bible. I find a reference that intrigues me, and start following the footnotes.)

*(Todd Agnew has a great song titled "Isaiah 6" that quotes that chapter.)

Anywho, it was in 1 Kings 22:19-29 that the footnote commented that back in those days a prophet was considered to be the real deal, if he had seen the Lord seated on His throne in a vision. I thought I'd be scared out of my wits if I had a vision of God on His throne; I prefer it when I see Jesus in my room. I had a vision like that last December.

It was December 26, 2008. I was writing on my computer and reflecting on what my cancer doctors had said that month. Suddenly, I realized the oncologist had sent me home with medication and hadn't said anything about future treatment. It dawned on me that he thought all we could do was treat my symptoms. He thought I was not curable. Probably because when carcinoid cancer goes to the liver, people don't survive. The cancer causes liver dysfunction, then cardiac insufficiency, and then death. (Maybe one out of a thousand survives?)

I went into my bedroom to read in Hebrews 10-12 where I had been reading that week. Reading didn't help, and I could barely see for all my tears. When I tried to pray, I couldn't put three sentences together. I cried out, "How can I comfort myself? Comfort me, Jesus!" All the bravery I had at other times was gone.

He told me, "Listen to music."

That was perfect!

I looked at the new CDs on my nightstand by Jeremy Camp and Kutlass. No, nothing seemed appropriate on Jeremy's CD. I played snatches of three songs on the Kutlass CD. No, nothing fit. Then I dug farther down in the stack. Aha! DAVID CROWDER*BAND--Remedy; last year's Christmas present. The first song states,
At the start He was there.
He was there.
At the end He'll be there.
He'll be there.
Also, a song that says God never lets go. Perfect. Calming. Reassuring.

I tried to sing along in my head, but I was too distraught. So I just laid there wanting Jesus. After about 4 songs played, I realized I was totally at peace. I asked, "How did you do that, Jesus?" Just like a child, "How did you do that, Jesus?" Then he showed me in a picture I could understand. It was just like the Sunday School pictures that I used to see when I was a little girl in Baptist Sunday School classes.

I was lying face down, with my head near the foot of the bed on the right edge. Jesus was leaning over me, with his hand stroking my hair. Just like a mother would stroke her child's hair. Jesus was wearing a light-colored robe, with a rose-colored cloak over his shoulder.

When I cry out to God in my greatest distress, He answers with the greatest response. It happened in church 2 years ago during a church service, when Gerry saw Jesus come down from the platform to comfort me. It happened in the hospital after surgery and it happened when my doctor lost all hope that I could be cured. (Incidentally, every time He appears, Jesus is on my right, like the reference in Revelation about the His sheep being on the right.)

I began seeing visions several years ago, when I asked God what it was like for my babies in heaven. He showed me how my babies were received into God's nursery, and my grandparents and other relatives came to meet them. It was wonderful. It is as if a call goes out to all the relatives to come receive the baby. A nursery worker handed my baby to my Grandma Laizure--who was in the lead. Then Grandma sat down in a rocking chair holding the baby while the others crowded around to see Sharon's baby. I could see Grandpa Laizure, my cousin Jimmy, my great-grandma Emma, and another 20 people following them down the wide steps behind them.

My grandpa Laizure went to heaven for a short time when he was in the hospital after having colon surgery. I believe that visions do come from God, and I'm always interested in their interpretation. A vision is different from something in your imagination. You don't put any affort into thinking about it. Also, for me they usually show up when I ask God a question or cry out to Him for help. He helps me see (with other eyes) what is going on.

P.S. After I first published this my younger sister told me about the visions she has had. She said our mother also had visions and was told things by the Lord about her life. Now I understand why Mom spent such a long time sitting in an easy chair after reading her Bible. She was spending time with God, and He was speaking to her.

I wonder what causes people to see pictures that God sends them? Is it just an open heart? I take the vision of my baby in heaven as a picture God sent to comfort me. 12/29/09

What Really Happened at Christ's Birth according to Sharon

2009-12-29T13:55:00.000-08:00

Hi,
I had this all written in my head on Sunday when I was thrown off course by a nasty virus, but I am better now. Instead of gardening and grading, as I planned to be doing now, I'm reading and writing. I'm getting blessings from becoming a fan of John Piper on Facebook. I hope there is gardening and grading by Thursday.

For Christmas I received a CD of Christmas music by Casting Crowns. I love the CD because of some new songs and new versions of older songs . I don't often hear "Sweet Little Jesus Boy" or "O Come, O Come Emmanuel" (an instrumental version.) The female members of Casting Crowns sing more songs on this CD than on others. Lovely harmonies.

However, I'm disturbed by a line in one song that says baby Jesus was wrapped in dirty rags because there was no room for them in the inn. I'm sending this blog to some men who have studied Greek and Hebrew to see if that is literally true. I have always seen swaddling clothes as being narrow strips of fabric that were wrapped around the baby. I imagine they might be old, soft pieces of fabric from old clothes. You wouldn't put new fabric on a baby since the baby has no bowel control.

Therefore, I have written this account of what happened at Christ's birth. It is divided into three sections.
1. Mary was Not an Idiot.
2. What Happened in the Inn the Next Morning
3. Shepherds have Big Mouths

1. Mary was Not an Idiot. Mary and all her relatives knew she was pregnant when she and Joseph left for Bethlehem. The Bible says she was great with child, therefore I think all her female relatives tried to help prepare her. Riding for days on the back of a donkey sounds like it surely might induce labor. At the least, Mary would have carried the swaddling clothes to wrap her new baby in, probably amplified by one or two blankets.

2. What Happened in the Inn the Next Morning.

The innkeeper's wife is speaking, " She had a baby last night!? Abram, you told me the girl in the stable was pregnant! You did not say she was about to give birth! There's a big difference! Lord have mercy!"

"Josiah, come here and fill this mattress with fresh hay! Take it out to the stable. "

"I'll find some blankets."

"Abram, is the family from Capernaum leaving today? They can have that room." Hurrying down the hallway. "She's going to need to drink plenty of liquids..."

3. Shepherds have Big Mouths

Luke 2:15-20. And it came about when the angels had gone away from them into heaven, that the shepherds began saying to one another, "Let us go straight to Bethlehem then, and see this thing which has happened which the Lord has made known to us." And they came in haste and found their way to Mary and Joseph and the baby as He lay in the manger. And when they had seen this, they made known the statement which they had been told about this Child. And all who heard it wondered at the things that were told them by the shepherds. But Mary treasured all these things pondering them in her heart. And the shepherds went back glorifying and praising God for all they had heard and seen, just as had been told them.

Clearly, the shepherds went back and told others what they had seen. I'm sure the marvel and wonder of it all brought people to their knees. I don't know how they could have kept people from going to the stable to see the baby.

And people would have brought gifts to the baby, in awe that he was or might be the Messiah. They might not have been sure of the significance of the Christ, but I think all the mothers realized that Joseph and Mary needed food to eat. Someone might have brought two barley loaves; another half of the fish he caught for dinner. Another woman would have brought clothes her babies didn't need any more.

Additionally, when Jesus was presented in the Temple, Simeon and Anna recognized the Messiah. I don't know how many days had to pass before their purification were complete, but Jesus was still a small baby. The Bible says Anna didn't leave the Temple, but she told everyone about Him who were looking for the redemption of Israel. Simeon most likely had a family and friends nearby. It's hard for me to believe that people didn't reach out to Mary, Joseph, and Jesus with whatever friendship or goods they could supply.

I am probably just trying to comfort myself that Mary and Jesus didn't suffer so badly when He was born; I'm trying to make it better. However, as a mom, I can't believe other mothers didn't reach out to Mary as soon as they saw her predicament. I realize Jesus was born in a stable and laid in a manger; I just don't want Him to stay there for weeks.

I'm Fine

2009-12-16T21:00:00.000-08:00

Hi!

A week ago I got the report back from the pelvic ultrasound. It shows a cyst 1.6cm long that is fluid-filled. It probably was a follicle that ruptured, but the fluid didn't leave as it should have. The pain decreased after 10 days, so I am doing much better.

My biggest concern was that I might have to have a laparoscopy to remove the cyst. I emailed a bunch of friends asking for prayer. Within 1.5 hours, I could feel the weight of anxiety lifted off my shoulders. We were at "Christmas on Euclid" where our daughter's choir from Colony H.S. was going to perform when I could feel peace surrounding me. Thank you for praying!

I saw my oncologist on December 15. More good news! My cancer marker, Chromogranin A is down to 25 again; so it's staying between 20 and 50. That has never happened before. My gastrin level was almost normal-- it was only 139. Normal fasting gastrin is under 100, but my previous numbers have been more like 200, so this is good. So we have two indicators that my tumors are staying small.

It's a school night, so I can't say much. Vacation starts on Saturday for two weeks. Yay!

Sharon

Something Got Healed!

2009-11-29T19:35:00.000-08:00

Hi,

Update on Jan. 27, 2010: I continue to feel better with regard to muscle aches. It seems as if I am not having fibromyalgia pain! When I was prayed for, I was at a weak point where I doubted that I could continue teaching all day. I felt like I needed to get someone to help me with my last two classes each day: my legs were not strong enough to do it. Praise God! I have been teaching all day for November, December, and January without needing to add an assistant.

Since this is arthritis season, I have specifically been checking the pain I have. It all seems to be arthritis pain, not muscle pain. Thank you, Father.

On November 7th I wrote that I had been feeling better for a few weeks after people prayed over me at church. I am still feeling much less aching in my arms and legs, and I am stronger in my limbs, also. Let me explain how this happened.

After the sermon during a worship service in October, the pastor asked people who wanted prayer to come to a room near the sanctuary. I went in because I'm always willing to be prayed for, and I was very tired and aching. I wondered if I would be able to continue teaching all year.

I had sat in my "prayer chair" that morning and explained to God that I was weak, and I hurt in so many places that I didn't know which ailment was causing which symptoms. There was pain from my back, I ached from my head to my knees, and I was weak. Some of the symptoms were from cancer, some from arthritis, some from fibromyalgia, and some were from the degenerating disks in my neck and lower back. Mostly I just told God about it, and I asked for some relief.

Therefore, after the service, I was very happy to have prayer for healing. I talked with the ladies about what I needed, and three people prayed for me. Then a group of us drove over to Everest, a local eatery. Something happened just before R. pulled into the driveway at Everest.

Suddenly, all I could feel was the pain from my back--all the other pain was gone! However, the back pain was magnified and I could picture it.
I saw the pain in my back as light radiating out like light from a star. There were 8 rays of light going in different directions from my neck. Four rays went to my head and neck and four rays went to my shoulders and back. The rays going to my head and mid-back were longer than the rays to my neck and shoulders.
From the degenerating disks at the bottom of my spine the "star" was smaller with four rays that were fainter and only about four or five inches long. The size and brightness of each ray matched how strong the pain was.

That "picture" and intense pain lasted 5-10 seconds. It was just long enough for me to feel the pain and understand what was going on. When I went on into Everest I felt much better, and just noticed pain from my back and arthritis. Since that night I have had a few deep pains from fibromyalgia--the ones that feel like the painful muscles are next to my femur and humerus. I have not had aching in my arms and legs and my muscles are stronger. I am stronger.

So, what was healed? I'm not clear what it was, yet. It could be that God took away the fatigue and pain from the carcinoid cancer. He may have taken away the little aches from fibromyalgia. Right now as I wrote the last two sentences, I've been having sharp pains in both thighs. Small, but sharp pains. Is He telling me the fibromyalgia is still here?

I'm just grateful for His Love and relief from feeling so badly.

Love,
Sharon

It's November

2009-11-07T11:42:00.000-08:00

Time really does fly by in the middle of the school year. I haven't stopped to write here for a few weeks.

I have a couple of different answers about the nausea and vomiting. My internist said the sudden vomiting could be from twisting in the small intestine where I had cancer surgery. A small piece of the intestine was removed, and when that happens there's a chance the bowel can kink there. That would explain the suddenness of the vomiting. The pain to the right of the mid -line was right on top of the duodenum--that's were my tumors were.

My oncologist said that vomiting is a part of carcinoid syndrome. My nausea is usually about 30-45 minutes after I eat breakfast when the food would have reached my duodenum. I have not been eating as much for breakfast lately because I am feeling full and I don't want to vomit. Breakfast is when I eat the largest amount of food. I am really hungry then and after school.

My Chromogranin A is still staying down below 50. It is at 46 this month, and I have been feeling better. When school started I felt tlike I might have to quit teaching after this year, but now I have more endurance. I've felt stronger for about three weeks, when I had a few people pray over me at church.

God is good all the time.
Sharon

Cancer is Tough

2009-10-19T21:10:00.000-07:00

I have new symptoms. I think they are from the carcinoid cancer or maybe my stomach is doing something new. I want this to be a true account, so here goes.

Now I am vomiting. A few times this year I have gone through a season of feeling queasy in the morning. I only notice it between 7 and 8 am. Then by 8 o'clock I'm at work and too busy to notice. On Thursday I suddenly vomited at 7:15 as I was about to leave for work. I felt very sick as I called for a substitute. A teacher has to punch in a bunch of numbers and answer at least 10 questions, just to get a sub to show up. I was shaking and had sweat dripping off my chin as I pushed buttons on my phone. I just wanted to get the call completed before I was sick again. Then I went back to bed until 1:30.

Today (the following Monday) I had a strong pain in my upper right quadrant of my abdomen at 7:20. It is a few centimeters distal of where my gallbladder was. I got in my car and felt the pain again before I backed out of the driveway. I pressed on the painful spot, and spit up into the trash bag about 20 seconds later. I went to school and was not sick again.

The pain does not seem to be where my stomach is. When I had an ulcer the pain was left of the mid line; this is to the right. I do have acid reflux, so I hope this is just some variation of that. I have never vomited from reflux, and I usually feel the burning in my stomach or throat.

I will see my internist on Wednesday.

Also, I have developed a feeling that is like a shudder of pain and weakness. I have felt it several times this month. Once when I had an episode of carcinoid syndrome, I stood up and had the strongest occurrence. Pain and weakness ran down through my thighs. I almost felt as if my legs would give out, but the weakness lessened as it reached my knees, and then it disappeared. That has happened before. This weekend, I had that sensation develop in my shoulders and run into my back. Again, I recovered because the pain weakened as it ran on down my body. What happens when it doesn't fade away?

Our God is an Awesome God!

2009-10-11T11:28:00.001-07:00

Our God is an Awesome God
He Reigns from Heaven Above
With Mercy, Pow'r, and Love
Our God is an Awesome God!

Our God is an Awesome God
He Reigns from Heaven Above
With Mercy, Pow'r and Love
Our God is an Awesome God!

Friday afternoon I was working in my classroom at 3:50. I had expected to go home at 3:30, as soon as an IEP was over. That's a special meeting for a Special Education student.

I was looking at the clock, making sure it was right. I was feeling OK (to my amazement), so I went ahead and wrote on the board preparing my requirements for Monday. I had my Homework, Agenda, Warm-up, Objective and the Standard on the board. That should make it easier to get started on Monday morning. I left school at 4:10.

I got home 25 minutes later. I came in the door and stumbled into the living room where I sat on the loveseat and petted the dog for a few minutes. Then Spunky stretched out beside me to take a nap, and I fell asleep, also. My condition had changed on the drive home. I couldn't even walk straight or stay awake. Somehow God preserves me while I am in my classroom.

When R came by about 5:00, Spunky got super-excited to see him. I staggered into the bedroom, pulled a nightgown over my underwear and slept until 7:40 pm. I got up at 8:40pm and felt pretty good. K and I watched some TV and talked. I went to bed about midnight.

October Begins

2009-10-03T15:21:00.000-07:00

Hi!
I've been teaching for 5 weeks so far and progress reports are due. School is in full swing. We have done 3 labs in seventh grade, and our famous cell models will be done on Tuesday.

This is where I begin to wear out. Always have, but this year is different. I have had to spend Saturday resting all day--except for doing laundry. Last week I stayed in my nightgown until 5 pm. This week I slept until 12:49, but I was bathed and dressed by 2:00. A small victory.

I don't know which of my ailments is getting me down. My cancer marker is low, but my body is still battling the disease. The battle makes me fatigued. The degenerating disks in my neck and lower back cause strong pains that radiate out from the spine. I can recognize those pains. The nerve pain in my neck is the strongest pain I have. My arthritic right arm and hand ache all the time now, and I never had arthritis pain until February 2009. I know people with arthritis are supposed to exercise their joints, but at the same time are to rest and not do too much.

I have two autoimmune diseases called Sjogren's Syndrome and fibromyalgia. Sjogren's has been attacking my salivary glands and lachrymal glands for 23 years. It's primary symptoms are dry eyes, dry mouth, and musculoskeletal pain. My fibromyalgia pains come and go. Before I had a diagnosis, I would have strong pains in my arms and legs that I can now recognize as fibromyalgia, but what I feel today is aching all over. I don't know which condition is making me ache--not everyone has five choices to pick from to figure out why they are hurting.

So there you are, all my symptoms. I feel like "These are the times that try men's souls." I wonder if I should take the whole weekend off from working in order to go back to school on Monday feeling refreshed. I usually work from 2-6 hours over the weekend to get grading done. And I am way behind right now. It's almost impossible for a teacher to feel like she is on top of everything. There is always more we could do to help more students achieve. I hear great teachers at work saying they love teaching, but the grading takes them until 1 am some nights. What about our health?

I appreciate your prayers. This is the time that takes great faith; when you have to press on with no big chance for improvement. Like my rheumatologist said, "It's not going to get any better" when speaking about my degenerating disks. I think that sums up the whole situation. Sometimes I envy the patients at the Chou Family Cancer Center who look so very sick that you know no one expects them to work for a living. Sometimes I just want to sit back in a recliner and be pampered, instead of jumping back on the freeway to hurry home again. Somebody drive me home and feed me dinner. But I stop by Carl's Jr. for food and fall asleep at 7:00pm. At least I don't grade papers on those nights.
Sharon

Update 9/26/09

2009-09-26T11:40:00.000-07:00

I have good news!

I saw my oncologist on Tuesday. My Chromogranin A is down to 27 again! I guess it just went up because of the testing I went through. So it's gone back down to normal for the third time in 5 months.

On the way to Orange County I was singing along with one of my favorite CDs for comfort. I was imagining myself going through another procedure with the music to calm me. On the way home I was singing on my way rejoicing!

Jesus my all to Heaven has gone! Glory Hallelujah!
He whom I fix my hopes upon, Glory Hallelujah!

I want a seat in Paradise! Glory Hallelujah!
I love that union never dies, Glory Halleljah!...

I know that my Redeemer lives! Glory Hallelujah!
What comfort that sweet sentence gives, Glory Hallelujah!

Shout on, pray on, we're gaining ground, Glory Hallelujah!
The dead's alive and lost is found, Glory Hallelujah!

I love that song! It's from Celtic Joy, A Celebration of Christmas by A.M.E.N.
They sing in English, Irish, Latin, and Greek.
I like this CD so much, I imagine it being played at my funeral as people come in to be seated. There are three songs about heaven. It isn't Christmas music, but hymns from 100 to 800 years ago. It would be nice to listen to at Christmas time. Some songs are plainsong. There are three people singing three parts; I sing along with the middle part.

Love,
Sharon

Update 9-6-9

2009-09-06T13:53:00.000-07:00

Hi,

When I was at the Medical Center getting my Octreotide injection this week, I got my lab results. The nurse has my whole chart there at that time, so I can see what both doctors have written, see my labs, read my surgical reports... I can do all kinds of cool stuff while we wait 45 minutes for the medication to arrive from the pharmacy. I have the delight of using a frozen drug; so we wait until the stuff thaws out and gets mixed up. Then the pharmacy technician shows up gently shaking the tube from side-to-side until the nurse takes it from her. It's a 5cc injection given in the hip and it's good for 28 days.

Anyway, my numbers are Chromogranin A 109; Gastrin 210. Gastrin is normal 0-100 and CgA is normal 0-50; so my numbers are a little over double the normal amount.

I will see my oncologist on the 22nd of September. If I don't hear from the surgeon's office by then, I will tell him about the EUS. Before then, I will email the PAC and ask about the procedure. I don't want to tell the oncologist that the surgeon's office slipping up. I would like to call before then, but I don't remember to call from work. I'm too busy with school stuff, and by time I get home everyone at the hospital is ending their shift.

I've noticed my attitude toward having another exam done has become that it's a nuisance to go through it again. Actually, the doctors might be finding my third tumor and getting it out of there. We know there is a tumor(s). It's just that i went through this twice during the last school year, and the doctors didn't find anything. I missed two days of work which uses up my sick leave.

This is different than the first tumor in spring 2008. Now I'm not in such a big hurry to find the tumor; I've been convinced that it won't make much difference if they do. If it's in the intestine, the doctors can remove it. It it's not there, I just keep taking medication. If the tumor is in the liver, the surgeon can't do anything unless the tumor is big enough to stick a needle into it. He says it needs to be about a centimeter before he can see it. Nothing the doctors can do will save my life, so it doesn't seem such an imperative to get tests done.

I have gotten my oncologist's attitude. There's not much we can do but manage my condition for as many years as possible. Carcinoid is a weird cancer. You may be OK until the time when your particular case flairs up, and then you go right down the tubes. But then, the docs can take out a foot or two of your intestine and you're good for another year. At least you're still alive--you might not be too good, but you're still here. Some patients take 10 or 15 years to die.

A Story About My Mom or Maybe it's About God

2009-09-06T11:48:00.000-07:00

This memory came to mind this morning after a season of prayer. I took that as an OK to write about it.

In July I was giving myself 3 injections of Octreotide per day. (I have to do that before I have scans done.) I went into the bathroom one afternoon for my shot. As I uncovered my belly, I could see the ring of bruises around my navel. Since the shots come every 8 hours I get quite an assortment of different colors of bruises. They are usually little green and brown bruises within a day. Sometimes I don't bruise.

As I was looking at my belly, I felt my mother's cools hands covering the bruises in the right upper quadrant around my navel. A memory came rushing back.

There was a time in my childhood when I had to have shots given because of a lung infection. I had gotten the first shot previously, and Mom went with me into the room when we came back for the second shot. I remember lying on the examining table, so the nurse could inject me in the hip.

My mother saw that I had a bruise on my hip from the previous injection, and she placed her hands across the bruise. It was cool and comforting.

That was the exact same sensation I had when I went to give myself my shot that afternoon. I could feel her cool hands. It was just as she had done; she had placed the fingers of her right hand on the bruise, and laid the fingers of her left hand on top of the right hand at the opposite angle. It occupied a small space, not the area of a complete hand.

So, when I felt that coolness on my belly, I had a comforting thought that my mother had seen what was happening to me, and she cared. That, maybe in heaven, she had prayed I would have comfort in the midst of getting so many injections.

Love,
Sharon

Update

2009-08-26T19:03:00.000-07:00

Hi,

I've been delaying writing this for a week, waiting to get the results of my blood work from my surgeon. I haven't heard anything, yet. This is Wednesday; I was supposed to get a call on Friday.

I saw my surgeon last week on Aug. 17. I hadn't seen him for 5 months, since my last scans. He was looking at my chart and said, " When was your surgery?"

Answer, "June last year."

Doctor, "And you're on the shots?"

Me, "I'm on the LAR." ( The shot that lasts a month.)

Doctor, "These just look like random numbers."

Turns out the surgeon was looking at a list of my Chromagranin A values from the last 15 months. He was looking at the big picture. My numbers have gone up and back down three times in 15 months. Evidently, they are supposed to settle down somewhere.

The oncologist and I were fat, dumb, and happy because my CgA values had come tumbling down from 93 to 48 to 22 in the last three months. I was actually in the normal range and thought God had granted me a reprieve for at least a few months. Evidently, the surgeon isn't fooled by a couple of good numbers. He expected the numbers to stay in a narrow range.

I pointed out that the last number was 22--a totally normal number. He wasn't impressed. He told the PAC to have my blood tested that day. If the CgA wasn't low, I had to have an EUS done.

EUS means the gastro guys will look in my small intestine again to see if there's a new tumor there. I last had that done in October 2008 and March 2009. I get tired of going in and having the doctors find nothing. I feel they are looking at me like, "Why are you here again?"

My surgeon wants to find the tumor(s). My oncologist says it doesn't matter where they are, the medication still treats them. My tumors are about 1 mm, and they didn't show up in the scans again August 5th and 6th. There is nothing visible in my liver, so the doctor wants to go back to the intestine where the previous tumors were and see if there is a new tumor. If I didn't have a tumor, my Chromogranin A would stay low all the time.

So I wait. I'll call tomorrow to see if I can at least get a nurse to read me the numbers.

School started this week. After school I feel like I hurt from my head to my calves. Lots of muscles ache. It took me until Wednesday to even stop at the dry cleaners for 5 minutes and leave some ironing. The other days I just went straight home. Tonight I'm feeling pretty good. K and I took Spunky for a walk.

Love,
Sharon

Update 8/7/09

2009-08-07T18:14:00.000-07:00

I had all my medical work done this week. I had scans done from head to knee in nuclear medicine.

Then the radiologist did a neck thru butt spect of my body. That is the area where carcinoid tumors are more likely to show. A spect goes around you and creates a 3-D picture. The radiologists are doing fewer spects of my body--I guess they see how much my insurance is willing to pay and have toned things down. This time there was 1 spect done 24 hours after i was injected with radioactive Octreotide; usually one is done at 4 hours, also. Plus, the technician did a 300 degree view, instead of 360 degrees. I suppose that is enough to show the doctor what he needs to know. Usually nothing shows up in the spects to show them where my cancer is: the tumors are too small.

I also had my monthly blood drawn: cbc with differential, complete metabolic panel, gastrin, and Chromogranin A. The last two are markers for my cancer. The CgA has been going down, but the gastrin is going up.

Lastly, I got my month-long shot of Octreotide or Sandostatin. So I don't have to give myself shots every 8 hours.

Pray for me because i require so much sleep now. I thought it was just my late-night hours, but last night i slept from midnight to 7 am and was sleepy again at 10:30am. I stayed awake until 1:30pm and slept until 5 pm. I can't do that and work.

When my blood is checked, my random sugar is at 96 or 97. The blood test is usually a few hours after a meal and the number is normal. I don't think the sleepiness is diabetes or hypoglycemia. Two months ago my Doctor checked my insulin level and it was normal. Carcinoid tumors can give off insulin, glucagon, gastrin and other chemicals. The tumors are endocrine tissue.

In a week I will let you know what the doctors say.

Love,
Sharon

Why "Live Like You were Dying" Doesn't Work

2009-08-06T18:38:00.000-07:00

When I first heard the song by Tim McGraw about a man who found out he was dying and decided to do everything he wanted in his remaining months on Earth, I thought it was a nice song.

However, I could see one real problem: (1.) Living like you were dying would be really expensive. The man went sky diving, etc., etc. Doing all the fun things you ever wanted to do and visiting all the places you wanted to see could cost thousands of dollars. What if you didn't die soon? You would have to pay all the bills! It works out OK if you have a large life insurance policy, but you have to croak within a couple months. What if the doctors are able to extend your life?

Upon further reflection, I found another flaw in the theory. (2.) It's based on the belief that you have to see all this good stuff on Earth because it's the best stuff you're ever going to see. Wrong! Heaven has much better stuff. So there's no pressure to run around and see everything. I used to feel regret when I would see the title "Five Places to See Before You Die" on AOL, knowing I would never get to those exotic locales. Now it doesn't bother me. I know I will see much more splendid things. The only thing that bothers me is that evidently there will be no ocean in heaven. Will there be a large lake?

After running around doing things this summer because I might be ill next year, I can also tell you that living like you were dying is (3.) exhausting. If I go to the beach one day, I sleep 4 hours the next afternoon. Last night I slept from 1:00 or 2:00 am until 6:00 am; this afternoon I slept from 12 noon until 5 pm. I have to stop staying up late! My body thinks I'm supposed to have 2 sleeps: one at night and one during the day. Of course, in the song the "dying" man doesn't have those problems. He just goes everywhere he wants.

But then again, I did get to see David Crowder*Band in Monterey last Thursday. They were at the northern Spirit West Coast, not the one in Del Mar. So we went to Monterey for the first time in years and had a great time. The maid at the hotel probably wondered about us. We never left the room until after 1:00 pm. I didn't even get out of bed until 11:00, but we saw some good shows.

Update; things are great!

2009-07-25T15:47:00.000-07:00

Hi,

Thanks for praying. I got my scan scheduled for August 4 and 5. We come back from a trip to Monterey, California the night before. I just have to be in Orange at 9:00 the next morning. Maybe I can sleep through the scan. That would be nice. I'm just afraid of waking up with my head in the tube and not knowing where I am. That would scare me and the technician. ;/

We are going to Spirit West Coast in Monterey. David Crowder*Band will be there Thursday night. They were not at the SWC in Del Mar, so we skipped Del Mar this year and will spend 5 nights in Monterey. I have a picture of Katie in Monterey when she was about 6. We will have to go to the same place and take a new picture.

I feel well, but I have to watch my limits. I went to the beach on Wednesday, but slept through Thursday afternoon. I went to Curves on Friday at 4:30 and on Sat. at 10:30. That's too close together--my legs are too tired to work out hard. Today and Sunday morning I have to rest because Sunday afternoon we are going down to the fire pits at Huntington Beach. We'll leave pretty early so I'm not exhausted.

Things are going OK.
Love,
Sharon

Update 7-14-09

2009-07-14T15:58:00.000-07:00

Hi,

In one week I should be having a scan done to see whats my tumor is up to now.

Please pray that I get the phone call ASAP from Nuclear Medicine to schedule the scan. The appt. should have already been made. The first day it could be done is June 21. We leave on vacation June 29- August 3. If we can't get the scan done before vacation, I have to stop every 8 hours to give myself an injection while we are out of town. I did it in Montreal, but I would like to be back on the long-lasting medication soon. I do better on then.

I am having symptoms for 3 weeks of heavy sweats that start suddenly and drench the hair on the back of my head. Last Wed. morning it was 79 degrees and my hair and the back of my hands were covered with drops of sweat. I was in the car with the A/C on. My face is often flushed. That's a classic sign of carcinoid.

Sharon

Update 7-7-09

2009-07-07T17:45:00.000-07:00

My Chromogranin A is only 48! My Chromogranin A is only 48! I don't know why, but my Chromogranin A is only 48!

7/8/09 Actually, I do have an idea why. As I wrote on May 30th, I had turned my CgA levels over to God. I laid them down in front of the altar and made myself very small. I told God I was tired of wondering where my cancer markers were going to be, and I gave them over to Him. I said, "These are Your markers. Do what You want with them." Wherever they go now is totally His will. Thank You, Father. Praise You, Father!

My Testimony

2009-07-06T23:00:00.000-07:00

I accepted Christ as my Savior when I was nine years old. I gradually let Him work in my life as a teenager and a young adult. However, I didn't surrender my life to God because I was afraid to; my faith wasn't strong enough to let go and let God take over. Also, I didn't know anyone who had done that. I just went along with what I thought would be acceptable to God and was something I could do.

For example, I went to Cal Baptist College in Riverside, California and studied biology. I knew that would be OK with my parents, it would be in keeping with my talents, and it was something I could afford to pay for. My parents would not have been so OK with me living in a coed dorm at UCLA and majoring in fine art where I would have been looking at nude models. I did what I thought was reasonable and not contrary to any Biblical teachings.

There was a popular saying at the time, "God loves you and has a wonderful plan for your life." I learned how to witness to people using the tract that made that statement, but I didn't think it applied to me. I didn't really think it applied to most people. I was an ordinary person. I had no great talent; I couldn't sing or preach or lead hundreds of people to Christ. I thought God just had a wonderful plan for special people.

So I worked as a science teacher, I married, and I had a daughter. I did not realize that God was working in my life, quietly and behind the scenes. After I had been married several years, I was very disillusioned with my life. The poor quality of my marriage had much to do with it.

In 2005 I came out of my disillusionment and realized God's plan for me was wonderful. It was during the hardest time in my life; when I realized my marriage was dead and nothing was going to save it. That was more devastating than when I found out that I had cancer. I remember clutching the steering wheel of the car each day driving back and forth to school as I listened to music by delirious?, Casting Crowns, Jonah 33 or Jeremy Camp. I would pray the lyrics of their songs as I drove down the street. It was especially intense between February and May of 2005.

I remember the day that I sat in the left turn lane at Hamner and Bellegrave in Ontario, California, praying as I waited for the light to turn green.

Jesus spoke to me and he said, "I'm waiting for you."

Jesus spoke right out of the middle of the back seat. He had the sweetest, kindest voice. He was waiting for me, and when I was ready, He would be there. There was no impatience, no toe-tapping. He was just waiting for me. I was that important to Him--He would wait for me!!

That was when Jesus became the one I love best; during those very hard days when I was in a situation I never thought I was going to find myself in. I remember going to a counselor who warned me that if I continued with my counselling, I was going to get to a place where I was well and I would be dissatisfied with my marriage. It might mean the end of my marriage.

When I heard that warning in 2005, I didn't care if my marriage ended; I wanted to be well. I knew I was close to being over my emotional problems. I was getting stronger. The end was in sight and I was going to reach it. If my husband insisted on staying where he was in his misery, that was his decision.

So I decided to go ahead and participate more in church life, even if it meant going to Bible study without my husband. In June 2006 I began working with Carmen greeting people before church and becoming acquainted with women who came to church alone. Sometimes I sat next to a woman who was by herself. In 2006 I began blooming.

A person cannot be spiritually mature until they are emotionally mature. All levels of maturity go hand-in-hand: social, emotional, spiritual, intellectual, etc. You cannot excel at one maturity and be immature in other areas.

Now I know that God was guiding me in my choices as I went through my early years. He guided me as much as I would let him. I know I prayed about which college to attend and which major to choose. I wasn't very adept at discerning God's voice when I was young, but I think he He put me in the place I belonged. I know I am teaching in the place He wants me to be now.

Mostly, what has happened is that I have an attitude change. I see my life as part of God's plan.
He sees this entire picture from the creation of the world until its end. We see a small part of human history. It amazes me is that God's intellect and love is so vast that he remembers to have me read a book on July 6, 2009 that may help with a situation next year and that may help my daughter lead someone to Christ when she is on the mission field.

Each one of us has a place in God's plan. We might be the boy with 2 fish and 5 loaves or we might be his mom who packed the lunch. We might be the person who caught the fish or the one who mended the net. Each one of us has a place in God's plan.

Update 7/1/09

2009-07-01T09:29:00.000-07:00

Happy Canada Day! K and I got back from Montreal yesterday after having a great time!

The hotel was in the perfect location for us because we were on the edge of Old Montreal to the south and Chinatown to the north. The metro was across the street. Chinatown was having a open air market for several days--when it didn't rain. We picked up a $4 umbrella there and a $2 sun hat. (The weather varied.) Best of all, I got a Chinese stamp made with my name in Chinese characters. I got the red ink, so now I can stamp my great works with my name. I don't think I ever would have come across that item for sale anywhere else.

The gentleman who made the stamp had a Chinese shop on the corner of the pedestrian street. He has books, calligraphy materials, art supplies, and various thing re: Chinese culture. The top of my stamp had to have a raccoon on it because of the month and year I was born. The shop owner carved my name in 30 minutes while K and I went to eat dinner. It was an interesting conversation because he spoke Cantonese and French. He understood some English. I spoke English and K spoke some French, so together we figured it all out.

We took pictures and walked all over Old Montreal. We went to two museums. Of course, we tried various restaurants. One we really liked was Chez Suzette. They had crepes, fondue, and spaghetti like the spaghetti in Romania. K especially liked the spaghetti.

We had a very nice time. I had my wallet stolen on the first day we were there. Luckily, I had just taken my debit card out of the wallet for safe-keeping that morning. I wish I had also removed my checks and military ID. The ID had Social Security numbers on it for R and I, plus his birth date. We are both at risk for identity theft now. However, the thief never had used the credit card or any checks by time I changed the accounts. Maybe he/she just wanted the cash. Pray that we stay safe from any fraud.

It was interesting how I reacted to the theft. I discovered it at a restaurant where we ate lunch. I stayed calm and walked back to the hotel to get cash--there was only $35 in my wallet. I keep my money in a few different places when I travel. When I returned to the restaurant, the server expressed concern over the loss of my wallet. I thanked him and said so many different things had happened to me in the last couple years, that this wasn't such a big deal. Five years ago I would have been much more upset.

I need to replace my health insurance cards, driver's license and military ID. I have signed up for any identity theft program. Richard already had one.

We still had a wonderful time. I acquired a small French vocabulary. It's easy to read French signs because the vocabulary is similar to Spanish, and, as K pointed out, everything is in the present tense. We picked up a few Christmas ornaments a the Christmas shop, and we had a very flattering cariacature done by an artist in one of the city squares. I brought home a T-shirt for each of us and many pleasant memories. I would go back again.

Catching up

2009-06-20T13:22:00.000-07:00

Hi,

A.) R, K and I went to the Mission Inn last night (6-19-09) to collect on the dinner for two that I had won. (From Singh Chevrolet in Riverside. If you ever need a Chevy, buy one from them. They are the Perfect Attendance program in our school district. Without their generosity, there are no prizes for the students.) We had a great time. The limo came to our house at 5:30, so we were early for our 6:20 reservation. The table was all ready for us, so we went right in. We like to eat a little early to avoid the big crowds. It was delicious food with excellent service.

R and I shared the Chateaubriand and K had fillet minion. The adults got to enjoy some wine with dinner and relax. It's good that K gets some experience like this so she is prepared for dining in a fine establishment when she is older. We have taken her to the Sycamore Inn in Rancho Cucamonga, and just about every else we have ever dined. She started going into fine restaurants when she was about six years old. I still have the dress she wore.

B. I was in Houston, Texas last weekend for the Love Family Genealogy Conference. I was still working on Thursday, but arrived on Friday and met some lovely, friendly people. We had a great dinner at Pappadeaux. I had a crab cake with shrimp (rather than the crawfish).

What did I learn about our branch of the Love family. (a) we are either descended from some branch of the Love family which descended from 5 Love brothers who lived in Chester County, PA in the early 1700s. Then they spread in 3 directions. They are all over the place.
or (b) We descend from an independent line of Loves who came from Ireland soon before the Revolution and were clearing their land when the Rev. War broke out. There is a Henry Love who received a pension for being crippled in the war. His story sounds much like the family story we have. However, Henry's son remembers his father's brother as being named John. We are supposedly looking for a Robert, but we are not sure about that.

So the Chester County Loves have proximity on their side, but the Henry Love family has a similar story. I have to keep looking under rocks to find the missing link.

C. I have discovered that much of my muscle weakness when I'm working out at Curves is not from cancer! It may be from taking Zocor for the last several months. Statin drugs cause muscle weakness. Paula (at Curves) and I would grieve at my loss of strength, thinking it was cancer taking its toll. Instead it could be medication.
Pray for me as I need to start eating right and exercising again. My cholesterol was up to 200 even on Zocor because I couldn't exercise and I'm eating badly again. Thanks!

D. Tuesday I go to Montreal with Katie. It's her reward for getting A's in French for 3 years. We leave Tuesday at 7:50 am. Return next Tuesday morning at the same time from Montreal. I'm learning to use my digital camera. I will see if I can upload some pictures to this blog. I am on Facebook now and I have gotten a few pictures on there.

Have a Great Week!
Love,
Sharon

God Gives me Presents

2009-06-07T19:18:00.000-07:00

It started last February. God began giving me presents to encourage me and let me know that He has not forgotten me.

On February 14th I took Kay and R to the fundraiser for Garden of Angels/Safe Surrender. (There is a link to their website on my first page.) Garden of Angels is a cemetery in Southern California for babies that have been abandoned by their mothers and are found dead. The Safe Surrender law in California is supposed to keep this from happening, but evidently, the people in need of safe surrender do not all know about the law. So I took my family to the fundraiser on Valentine's Day. It's about love and totally fitting that it is near Valentine's Day every year. This is the first year I have gone to the fundraiser.

At the dinner there was a silent auction and a raffle for various items that have been donated. I bought 5 raffle tickets and put 4 of them in a drawing for a beautiful pearl necklace. I prayed, "Lord, I'm 56 years old and I've never had a pearl necklace. I've only got about 5 years left on this earth, and I think it would be totally appropriate if I won this necklace." I left it at that. I enjoyed my dinner and bid in the silent auction. There were many nice things to bid on. In fact, I had such a nice time, I want to reserve a table next year, and take friends who would be interested in supporting Garden of Angels/Safe Surrender.

When the winner of the pearl necklace was announced, I had my 4 tickets spread out in front of me. Kay was watching and when the winning number was announced, she said,"Mom, you won!"
I wasn't really surprised. When the MC asked me what I thought of winning, I said, "Amazing!" I really meant, "God is amazing!"

One day this spring I had a difficult time when I realized I'm not going to be around to see my grandchildren do things. I don't know if I will even get to see them. Kim, a secretary at work who also has cancer, was comforting me. She reminded me of simple things like birds singing are God's gift to us. So I've been extra aware of birds singing lately.

Sometimes, when I feed Spunky in the morning, I sit out on the patio for a few minutes with a cup of tea. The birds in my neighborhood sing and sing. The other day I realized I was hearing three different bird songs at once. Then another bird began chattering to the west, and the turtledoves returned on the house to my south, so I could hear their cooing. It's as if I live in an aviary. God is good.

Another gift from God is the healing of my marriage. I'm sure not doing it. R and I have not lived together for almost three years. He has been coming over on weekends and doing yardwork. We have found a place where we can go to church together where people don't know our history. We can worship and socialize like a couple that has been married nearly 24 years. One evening while we were eating hamburgers, Richard asked a couple men about the rings their wives were wearing. Both men had bought their wives new rings after they had been married some years. One man referred to his wife's "starter set" and said he had replaced it long ago.

Soooo, I now have a new ring! It has a large center stone with two smaller diamonds on the side. I just got it Friday night, and only a few people have seen it. So you are among the first to know!

But that's not all! God gave me presents on Thursday, Friday and Saturday! Thursday there was an assembly sponsored by Singh Chevrolet for our students with perfect attendance. Singh also gave a prize to a teacher of dinner at the Mission Inn and a ride there in a limousine. And I won! I was really surprised by that one. I was thinking about some teachers with good attendance, when Dave announced that I had won.

Saturday Kay and R and I went to a fundraiser for Foothill Family Shelter. This is a wonderful group in Upland that helps families have a place to live, gives them job skills, and teaches them how to save money while they are in the two year program. The Shelter has a 120 day program and a longer program. It was so inspiring listening to the families talk about all the help they had been given! The Shelter also helps them with therapy, job skills, parenting skills, and dental care. One of the dads said he had a new smile, and thanked the Shelter for giving an ex-convict the tools to go out and get a job. One son wanted to especially thank his therapist. The younger son said he was learning how to express his emotions in group therapy. A mother learned how to take care of her children and plan for a future together. Another dad had saved $10,000--the most money anyone who passed through the Shelter had ever saved!

I was so excited by the work at the shelter that I wanted to make a donation. One of the volunteers suggested that I buy raffle tickets for the jewelry that was being raffled off. I donated enough money for 8 raffle tickets. When the MC began reading the numbers of the winning tickets, I handed some to a lady at our table so she could play along. I didn't think I needed to win anything else this week. Kay asked if she could have some and just took one.

When the MC read the number for an amethyst cluster ring, Kay won! She was very excited. I told her God wanted her to have a present.

Isn't God amazing?

Update 5/30/09

2009-05-30T22:53:00.000-07:00

Hi,

I have not written for a week. Last Saturday and Sunday I was going through such a difficult time that I couldn't write about it. A few days later, I could look back and see what had happened, but I didn't have time to write about it. So, one week later, I will try to reconstruct what was happening.

I had previously written that my Chromogranin A had only gone up to 93 in May. The April reading was 87, March was 76, February was 57 and January was 63. December had been 254 before I started taking medication. Those are small increases, but there is just one problem--my numbers aren't supposed to be going up at all.

My oncologist, Dr. Z, is following the protocol of a study being done at Philipps University in Marburg, Germany. The title is PROMID: Octreotide LAR delayed progression in neuroendocrine midgut tumors. This study found that the median time before the tumor progressed after starting Octreotide LAR @ 30 mg per month was 14.3 months. The patients on the placebo had their tumors delay progression for a median of 6 months. My doctor said the reason the disease went 6 months without progressing is because the tumors grow so slowly.
The problem? My tumor delayed progressing for only two months: January and February.

When I saw Dr. Z on May 12th, he said that unfortunately, it looked from my symptoms like my numbers were continuing to go up. He told me that if Octreotide stopped working for me, there was a study being carried on at City of Hope that I could qualify for.

So last weekend I was facing the following fears:

1. If my tumors keep growing like this, I'll be ill soon after school starts in August. I will miss work if the surgeon does a chemoembolization of my liver.

2. That's if they can find my tumor. It showed up in November, but wasn't visible in March. It has to be about 1 cm, so Dr. DI can see it well enough to stick a needle in it.

3. While I was on the LAR (long-acting injection) my numbers went up much more slowly than when I gave the injections to myself. I had to start giving myself shots again on May 26th to get ready for a scan to be done in July. (I can't have the long-acting drug in my body when the scan is done.) When I give myself the shots, the timing of the injections isn't exactly 8 hours apart, so the medication doesn't stay level in my bloodstream.

4. So every time I stop the LAR because of a scan, my cancer will grow more quickly.

5. How long until I am so sick I can't work?

6. If I get into a clinical study, what if I get put on the placebo? Would the researchers really just let someone die on the placebo, rather than switch her to the drug being tested?

These are the crazy kinds of thoughts that I have. I wanted you to know what it is really like to be me and have cancer. Everything is not OK all the time. God just helps me get through it.

Sunday morning I got down on my knees and prayed. I know that God always hears me. I know that because of His greatness--He says that He hears us and He does. I just don't always feel like I'm getting any response. So I got up and went on getting ready for church.

As I was getting ready, God told me to praise Him. I acknowledged that when I first became ill, all I could do was praise Him. I had no idea what the doctors could do. So I praised Him in song that morning.

Then He sent me a picture of myself kneeling at the altar in church and making myself very small. I had brought the graph of my Chromogranin A values. I laid it down at the altar and knelt. I had pictured this image of myself kneeling once before, but i thought i was just being overly dramatic about bringing in the graph. I guess God really wanted me to bring it in. So I did what He told me to do.

That lifted my spirits so I wasn't as frightened. That's how God helps me.

Update 5/15/09

2009-05-15T23:18:00.000-07:00

Hi,

Tomorrow is the Relay for Life at Rancho Cucamonga High School. Kay and I will be there. I'll do the first 1-2 laps and go home. Kay does charity events because she is in Key Club at Colony High School. She is their historian, so she goes to take pictures. Tomorrow she will be there for 12 hours to take turns in the relay. She raised $100 for the American Cancer Society.

I had the best Mother's Day ever. We went to church and then to brunch, and we even had a reservation for brunch! Then I sat out in the garden and deadheaded flowers while Kay and R trimmed and planted a few things. They went over to see Grandma H afterwards, but I was too tired to go. I had to be able to go to work in the morning.

I am not doing very well. For the last three weeks I have added problems with fatigue on the weekends and have gone to sleep for three hours on a Saturday afternoon, or just sat out in the garden, instead of planting anything new out there. Of course, I'm tired during the week, so I don't cook for Katie and myself. Tonight I slept from 5:00 until 8:24. It's a good thing Spunky barked, or he would have been outside alone even longer.

This is where you can help. I have plenty of money for food, but I just can't cook it. This week I heated up some spaghetti sauce for Kay on one night, and she was able to eat that for two days. Otherwise, I buy Chinese, or she eats frozen food. Her Dad buys her fast food after school many days of the week. I'm not getting enough protein, and that may make me feel weaker. Sometimes I eat plain sliced ham or turkey, so I get protein. It's easier for me to come home and just eat fruit, cookies, or a peanut butter sandwich. I can't put a meal together.

I do my grocery shopping on Sunday or Monday. I try not to buy many things that will spoil, but I throw away too much food. I'll buy a package of Express Salad and sometimes use half before it goes bad. Tonight I cooked some strips of steak that I was going to use to make stir fry, but I never got that done. I hope the meat hasn't gone bad. I just pan fried it with some olive oil and soy sauce, so maybe I can use it tomorrow. I only thaw out one frozen meat per week because I only cook one or two times weekly.

I have plenty of money for food, and I can even buy the groceries, but I need someone who can cook for Kay and I. I would be happy to pay $20 for a prepared meal. It doesn't matter which day of the week it is, we can use it. R would help us, but he doesn't live with us, and he teaches and has office hours from 5-9 Monday through Thursday. Please let me know if you can help me. I've appreciated it when people cooked before, and the food was delicious!

I saw my oncologist on Tuesday for our monthly appointment. The chromogranin A test did not get done, so I had blood drawn for that test again. There are some fasting tests the doctor would like to have done to see what else my tumor might be producing. He said neuroendocrine tumors (carcinoids) can also give off insulin, gastrin, glucagon, and VIP, so he is checking to see if my tumor is producing those compounds.

For the record, my symptoms include my usual carcinoid digestion, feeling heated, high blood pressure, nausea, poor balance, and mounting fatigue. My chromogranin A level was at 87 last month. It feel like I have passed 100 now. My last tumor (June 2008) was removed when the numbers were at 170. I felt really well in the middle of the day today. I just get very tired.

God bless you all and Good Night!
Sharon

Update 4/4/09

2009-04-04T16:36:00.000-07:00

I am feeling well these days. I got the Octreotide LAR (30mg) on Tuesday, March 31. The next morning I was able to get up a few minutes after my alarm went off at 5:55, instead of lying in bed until 6:10 or 6:24. So the medication helps me to not feel so exhausted. I should be able to stay on the LAR for a few months before I need to go off of it again for more testing.

Today I visited with Em, my younger sister. We talked about how God reveals himself to us. She, also, picks up a book and finds God has lead her to exactly what she needed to read that day. She told me our mother heard from God, and He would reveal things to her about her life or about our children. Em also has seen visions, so that is three generations in my family that God speaks to in a special way. I'm glad I brought up the subject of visions or I never would have had that conversation. Maybe I'll hear from some other relatives now, because bringing up what God told you last week doesn't come up in every conversation.

Em could talk with our Mom in a way that I couldn't. My older sister and I left at the same time to go live in the dorms at California Baptist College in the 1970s. Em was still at home for several years and she and Mom would talk. Over the years, Mom confided some of the things that God showed her.

Em and I talked about our children in heaven that are up there with Mom and our grandparents.
One day I'll write out the vision I had of my baby being received into Heaven in God's nursery. I saw a nursery lady with my baby in her arms, and when she turned around, there was my grandmother, grandfather, cousin Jimmy, and my great grandmother followed by others, coming down a few steps into the nursery. They were all there to see Sharon's baby. My grandmother sat down in a rocking chair and held the baby in her arms. My family gathered around to see my baby and they were taking her home to live with them. Em and I think there may be more grandchildren in Heaven than there are here on earth. My mother should be busy.

One thing I have more sympathy for is arthritis pain. My mother suffered pain for years. Now I've started to be in pain in my right hand and wrist and in my shoulder. Today I moved a leaf rake 3 strokes and my wrist began to hurt. It still hurts, so that is all for today!

Update 3/21/09 The Big One

2009-03-21T14:17:00.000-07:00

Hi,

Thank you for your prayers. I know they got me through Tuesday, Wednesday and Thursday this week. I might not have gone to work without them. On Friday, some friends told me I looked much better than on Wednesday. So, thank you.

I saw my oncologist on Tuesday. The medical treatment with Octreotide is working well. The tumor in the liver shrank, and my tumor marker (Chromogranin A) is down to 57. A count of
0-50 is normal. So my numbers are almost normal.

The bad news is that the doctor was very blunt about making sure I understood that I will not recover from carcinoid cancer. He said even if the tumor in the liver was able to be removed, the tumors are being spread through my bloodstream, implying that the tumors can't be stopped. In the meantime, I should continue to be in good health for the next two years. The progress of the disease should slow down for a couple years, so that I can continue working.

Outside of asking God for healing, I always ask God for the least invasive procedure, with the best possible results. I have continued to ask God that I will be able to work, so I can have my income and my health insurance, and so that I'm not stuck at home. I like using my talents and training, plus 7th graders can be very funny. So, in one way, this is an answer to prayer.

I was devastated on Tuesday and Wednesday. Pat and Sandy at work wanted to talk with me, but I told them, "If I start to talk about it, I'm going to cry."

I got help on Wednesday evening when I talked to my friend Gerry. Gerry had thyroid cancer and had her thyroid removed in April 2008; so we went through cancer surgery together. We are in a prayer group on Wednesday nights. She is going through higher counts of her cancer marker, so we are both in need right now. What a cancer patient most needs is another cancer patient to talk to; so I felt much better after talking to her. We comfort each other.

The irony is that Gerry and I both have the gift of healing, and we have been healed from other diseases. So now the healers need healing. Its good to talk because we are both mature Christian women, and she understands where I am in my walk with Christ. So it's not like Job talking to his friends. Gerry understands where I am.

I saw the surgeon on Thursday. He doesn't put thing quite so badly. He has a PAC (physician's assistant cancer) who remembers me and the symptoms I've had in the past, so it's nice to talk to her. On the record for other patients; I have poor balance, fatigue and hot flashes even on the Octreotide. I always have this odd change in my digestion that is the first symptom I get from carcinoid tumors. However, I'm still working, and in January I was passing several days per week where I felt like I didn't even have cancer. That was after a two week vacation and Octreotide shots.

The surgeon (Dr. DI) told me that when we can see the tumor, he will take it out. He also said that in the next two years the technology may improve, so that doctors can discern the microcarcinoids that I get and remove them sooner. He said, "You get those tumors that only need to be a few cells, and they make you sick! That last one we removed was the size of a pinhead." So Dr. DI didn't make any false promises, but he left me some hope.

And Then God 2008

2009-03-15T21:31:00.000-07:00

This is finished! 10:10 pm, March 23, 2009

Removal of the First Tumor

After the tumor could not be removed in February 2008, the surgery was postponed until March 27, 2008. I was badly disappointed. The Monday morning that my internist, Dr. B, called me to say my pre-op chest x-ray showed pneumonitis, was the same morning that I got the call from UCI to schedule my surgery. I had to tell the UCI nurse that I had pneumonitis. That pushed out the removal of the tumor two weeks farther into the future. I just wanted to get that tumor out of there before it could do any more harm.

Unfortunately, the tumor spent March metastasizing. I was amazed. The doctor was amazed. Dr. L removed the tumor endoscopically with me under general anesthesia. He is a surgeon in the Chronic Digestive Disease Center at UCI Medical Center; he’s not an oncologist or a cancer surgeon. I remember the phone call Dr. L made to tell me the results of the operation.

Dr. L said the tissue he had removed was 0.7 cm and the tumor inside of it was only 0.7 mm. That makes the whole tumor about as big a crystal of salt or sugar. I remember the doctor sounding amazed as he told me the tiny tumor was metastasizing. I think it’s one of the smallest tumors to ever be caught in the act of sending cells down a lymph vessel. I think his expression was, “I don’t know what to make of this!” He wanted me to get a second opinion from another surgeon, and, as we were speaking on the phone, decided I should see an oncologist, also.

Becoming a Cancer Patient

So I became a patient at the Chao Family Cancer Center at UCI Medical Center. I didn’t know that was where I was going as I parked my car in April 2008; I thought I was just looking for a surgeon’s office in building 22. When I saw the name on the building, it became official; I was a cancer patient. Oddly enough, no one had used that word to speak to me. They all said “tumor” or “carcinoid”, but I had to admit that if a tumor is metastasizing, it must be cancerous.

I had my Bible with me that day I went to see the surgeon. As I was waiting, I read from Philippians chapter one. When I got to verse 19, I knew that God had sent me to a special passage.

“For I know that this shall turn out for my deliverance through your prayers and the provisions of the Spirit of Jesus Christ, according to my earnest expectation and hope, that I shall not be put to shame in anything, that with all boldness, Christ shall even now, as always, be exalted in my body, whether by life or by death. For to me, to live is Christ, and to die is gain. But if I am to live on in the flesh this will mean fruitful labor for me; and I do not know which to choose. But I am hard-pressed from both directions, having both the desire to depart, and be with Christ, for that is very much better; yet to remain on in the flesh is very much better for your sake. And convinced of this, I know that I shall remain, and continue with you all for your progress and joy in the faith, so that your proud confidence in me will abound in Christ Jesus through my coming to you again.” Philippians 1:19-26

I finally had found someone who understood how I felt! It was the apostle Paul so many years ago. Especially verse 23 when he says he is hard-pressed from both directions. No one I speak to ever understands that. If I spoke with more people over 80 years old, I think they would understand. As we age, we get to the point that so many of the people we have loved have gone to heaven, that heaven becomes a welcoming place. By that age, maybe we are less obsessed by this world, and ready to rest in our Savior’s arms. Plus, I was very excited that day because Jesus had planned for me to read a special passage when I was scared.

In theology when someone reads a passage that applies directly to them, even though the circumstances may not be exactly the same as in the Bible, it is called a rhema. A rhema is an insight into a passage or application of a passage to someone’s life. When you think, “That sounds just like what I’m going through”, that’s a rhema.

So I met my surgeon, Dr. DI, in April 2008. He was very direct when he spoke with me, but clear and friendly. As he told me my situation, he echoed some of the things I had read about carcinoid tumors. Dr. DI explained the typical situation:
 If a patient comes in with a 1 centimeter tumor, the tumor is not functioning or metastasizing. (It has usually been found incidentally to some other problem.)
 If a patient comes in with a 2 centimeter tumor, the tumor may be functioning and metastasizing.
 When a patient has a 3 centimeter or larger tumor, then it’s more likely that the tumor is functioning and metastasizing.

[Functioning: in carcinoid tumors, it means the tumor is giving off the hormones and neurotransmitters that make the patient sick. The chemicals given off are things like vasodilators or vasoconstrictors, serotonin, prostaglandins, histamines, chromogranin A and more!]

The doctor said, “Your tumor is only 0.7 millimeters and it is acting like a 2 or 3 centimeter—no, a 3 centimeter tumor. This is going to be a case report.”

What Dr. DI said matched what I had read. I had searched literature on the Internet. Recently, there had been an increase in information on microcarcinoids. However, there have not been many studies done on those tumors to indicate what the prognosis was.

[Case report: Researchers report on an individual rather than a large study of 200 patients, for example. The information about the individual is considered significant to advancing the knowledge about her condition.]

In April 2008 my doctors began tracking the amount of Chromogranin A (CgA) in my bloodstream. That is the definitive marker for carcinoid cancer. Other chemicals are given off by the tumors, but this one gives the best info to help you see if the tumor is growing. The normal range for CgA is 0-50. Mine was 132: more evidence that a tumor was growing. It backed up my symptoms.

My oncologist and my surgeon do not necessarily see my cancer from the same perspective. The oncologist had never dealt with a case that was just beginning. He usually sees patients that have progressed in the course of the disease to a point where the tumors are too numerous to remove or they cannot be removed. Frankly, carcinoid patients are curable only when they have just one or two tumors. The average time it takes to get a correct diagnosis of carcinoid cancer is five years; the patients usually get to a cancer center when they have many tumors across the abdomen or in the lungs. So doctors rarely see a patient at the curable stage.

Dr. Z, my oncologist, had the attitude that we were going to manage my cancer with medication. (That is a new concept in cancer treatment: you manage the cancer. I have seen it demonstrated by breast cancer patients who realize that their disease is terminal, but in their remaining years they will go through the necessary treatments and surgeries to help them live as long as possible. One mother with a fourteen-year-old daughter said she planned to live long enough to see her daughter graduate from high school and college and get married. I hope she does that.) I was coming in for regular check-ups, blood-work, and scans. Since we couldn't see the tumor, there wasn't much else to do. That is when I sent out the email saying that I was going to Romania; my doctor said I was good to go.

I went in to see my surgeon in May 2008, thinking that I could go on the Romania missions trip in July. My daughter, Katie, had gone two years earlier, and she loved it there. She wants to be a missionary. I was finally willing to get out of my comfort zone to go serve God in Romania. He was calling me there, and I was willing to go through the discomfort to be there. I was also excited that we were to give our testimonies, so I could tell how much God loves us and how God had been with me through my latest adventures. I had no idea that 20 minutes after I entered the examining room, I would be consenting to major surgery.

Dr. DI wanted to surgically resection my small bowel. He wanted to remove the portion of the small intestine where the first tumor had been, based on his experience that other tumors show up nearby the site of the primary tumor. While my surgeon was on the phone with my oncologist, the resident explained to me that Dr. DI hoped to effect a cure by removing this two-inch section of the bowel (the proximal duodenum). The doctors never said two-inch, they just held up their fingers that far apart. So I was set to have surgery as soon as I finished teaching in June.

I continued to teach until the end of the school year. It was difficult. I was weak and dizzy. My brain didn't function very well and I had to find easier ways to say things and do things. I would wheeze when I coughed, another carcinoid symptom. All the symptoms I have mentioned earlier in this blog continued. And I was very, very tired.

I told a friend that I didn't want to go straight into surgery on June 12th. I was exhausted and needed to rest. And, as she pointed out, I needed to be stronger to recover from the surgery. Her doctor had told her not to have her cancer surgery until she was ready. So I called the surgeon's nurse two weeks before I was scheduled to have surgery and asked for a one week delay. She could only arrange it two weeks later on June 27th. That was fine. My resection of the proximal duodenum was scheduled for June 27, 2008.

I remember driving home from the Cancer Center before my surgery thinking that it really was going to go through, and I was going to have part of my intestine removed. There was nothing I could do to stop it. I felt alone. So as I drove up the 57 freeway to get on the 91, I suddenly noticed what was playing on the CD I was listening to. It was a new CD by delirious? called Kingdom of Comfort. The song is "Stare the Monster Down." I had listened to it a few times before; suddenly I noticed that Martin Smith was singing about his father's cancer.

"Eighteen weeks of chemo; six doses of hell.
A family bucket of pills a day to keep my father well.
Stare the monster down! Stare the monster down!
Is there, is there any room in Your arms of love to carry us, carry us away?"

One more time God sent me a song that was exactly what I needed when I needed it. I wasn't alone. God was with me right then and He would carry me through my cancer.

The Second Surgery, June 27, 2008

My surgery was on a Friday afternoon. I went through the preparation the day before and stopped eating. I didn't realize that the swallow of water I had on Friday morning would be the last one until Monday.

My friend, Paula, drove Katie and me down to the hospital in Orange, California. My father and Richard came soon after. The surgery was at UCI Medical Center. They are building a beautiful new hospital connected to the old hospital. What was funny is that there was no restroom in the pre-op area. An employee explained that there would be one in the new hospital, but until then, I needed to use the visitors' restroom. It was just kinda funny to wait in line with the moms and children to use the facilities.

There is a point before a procedure, when I have to go into my shell like a turtle. I usually listen to music: Messiah by Handel, or anything by David Crowder*Band or Jeremy Camp.

The nice thing about surgery is that you get to sleep right through it; you don't realize 4 hours have gone by. When the anesthesiologist gives me the "happy juice" in pre-op, I may not even remember going down the hallway. After this surgery I did remember something about being the the operating room. It was probably after getting to the operating room and being moved around. I remember movement or someone being near my head and right arm. I didn't see anything.

The time from 1:00 to 5:00 was not all spent on surgery. I realize the staff must have spent some time positioning and draping my body. I had a special IV put in next to my left collarbone and stitched in place. Then the doctors did an endoscopy with an ultrasound to locate the new tumor and find the location of the primary tumor. They were going to remove that section of my small intestine. Before removing that tissue, they did a laparascopic exam of my liver. I had four lesions there that showed up in a CT scan, and one of the lesions was removed. A six-inch incision was made to remove a section of the small intestine next to the stomach.

When I woke up, one of the female residents was walking past me saying, "We didn't need the Octreotide. What do I do with it?" I was glad to hear that. Octreotide is administered during surgery if the patient has a carcinoid crisis (heart stops). So I didn't have a carcinoid crisis, but I did have a doctor who was aware of them. It's nice to know Dr. DI is up-to-date. Some carcinoid patients don't get adequate care for years because the disease is very rare.

After the surgery, I went into a unit that was in between intensive care and regular care. It was the unit where the patient has be be able to administer her own drugs by pushing a button on the IV. I was on morphine.

I was in the hospital for 5 nights and 6 days. Five nights of sleeping for one hour before midnight, then sleeping from 1:30-3:00 am, and sleeping another hour (maybe) before 8:00 am. The intern assigned to my case, Dr. Washington, stopped by to see me about 5:50 each morning. He was a tall, strapping fellow with a broad smile. Dr. DI and his medical students would come by later in the morning.

I remember my first morning in the hospital. Dr. DI and troops arrived at my door. He let the two ladies come in first, then followed them. Dr. DI was shorter than the women, so he leaned to the right to see me. "Your liver looks great!", he said. Good news because carcinoids can go to the liver, and he's a liver expert, so he would know what a healthy liver looks like. He's a hepatobiliary surgeon.

God is With Me in the Hospital

I passed some very painful nights in the hospital, but it gave God an opportunity to minister to me in a very special way. During the first night, I woke up almost unable to move because of the fresh incision and surprising weakness in my arms. I had slid down in the bed and couldn't move. I had an IV in each arm and nasal-gastric tubes coming out of my nose. I took a look at all the tubes intertwined and gave up trying to move. All I could pray was, "Help me! Help me!"

Instantly, God gave me a picture of what was happening. It was as if I was in the room one floor above me and looking down. I could see myself in the hospital bed. Three inches away from the right side of my head was a shining, golden orb. It looked like a small oval platter, but it was a few inches thick. As I looked, I jerked my head to the left, and the "platter" moved to the left. When I turned back to the right, it followed me to the right, always staying only three inches away from my head. I remembered a verse I had not thought of since childhood, "There is a friend that sticketh closer than a brother ." KJV

So God showed me that he was right beside me; I was not alone. I marveled that He helped me to remember a verse from so long ago. I had hope that when I needed it, other verses I had learned would come to mind. I think of these visions as pictures that God sends to comfort me.

Since then I have done some reading, but not a whole lot, to ascertain what I saw. Was it God? Was it my guardian angel? I learned that people don't actually see God, in most cases. Moses saw the backside of God as He passed by. Then Moses' face glowed so much when he came down the mountain that he had to veil his face. (Please leave a comment if you know another instance.)
The others in the Bible are agents of God. The men who came to talk with Abraham were agents of God, not God Himself. Humans cannot look on the glory of God.

Therefore, I decided that the glow represented my guardian angel. Others have seen their angels as a light or a glowing figure, so I'm going with that. Many years ago, I think it was on the Phil Donahue Show, there was a woman guest who could see a person's guardian angel. Woman after woman in the audience asked if she could see her angel. The guest would tell the woman what color her angel was. One woman had two angels. I wish I could come across that information again because the color of the angel had significance.

After a few nights in the hospital, the pain from the incision was eclipsed by the pain in my neck. One morning Dr. Washington, my intern, came to check on my pain level. I told him about the pain in my neck and ranked it a 7. It really felt like an 8, but I didn't want to sound like a baby. Then he asked me how the incision felt. "Oh, it's not that bad, more like a 5." He wondered if I had been positioned in the wrong way during the surgery.

The next night, I remember Elena was my attendant, I woke up after the nap I took around midnight. (Elena was a wizard at arranging pillows to make me comfortable.) The pain in my head and neck was excruciating. I called Elena and had her help me get out of bed. It felt like my neck was collapsing down on itself, as I slid down in the bed. My neck felt compressed, so I wanted to stretch it out. God must have given me the idea, because I didn't even think about it. I said I need to sit up in the chair with a pillow between the top of my head and the wall, and pillows to bolster me on the sides. Then I wanted to have my feet pushing against something strong for support. Elena didn't protest. She set me up with pillows, and moved the bed over so that I could brace my feet against the rod that stretches down the side of the bed about 1 foot off the floor. I leaned the top of my head against the wall so it would stretch my neck, and started to pray.

I stayed awake for half an hour. I didn't realize I had fallen asleep until I woke up 1 hour and 15 minutes after I got out of bed. When I woke up the pain was completely gone. The cool peacefulness of the Holy Spirit was in the room. I called Elena. She helped me get back in bed, and I fell asleep. I never had any more neck pain while I was in the hospital. It was the first time God had ever answered my prayer to take away my pain. Twice in my life others had prayed for me and pain went away, but I couldn't do it for myself.

People Who Helped Me in the Hospital

I'm writing about the different people I met in the hospital partly so I remember them and partly so I remember things that give God glory. I remember the Monday morning I first sat up in a chair. The nurse and attendant got me out of bed, bathed me and washed my hair. I sat up in this plastic chair feeling totally forlorn, old and alone. I could hear other people with visitors, but I was alone. Then Dr. Washington, my intern, came striding down the hallway. When he saw me, he stopped from his appointed rounds, and came into my room with a big grin on his face.

He said, "You look great! How are you feeling?"

After we exchanged comments, he went on his way. I tried to figure out how the heck he thought I looked great. Then I remembered he had never seen me before Saturday morning. He had just seen me with grey hair sticking out in all directions, no make-up, and in great discomfort. So I guess to see me sitting up with a clean face and wet hair going in only one direction was a great improvement. Plus the nasal-gastric tubes were gone.

That was an adventure. The two guys that did my x-rays to see if the *nasal-gastric tubes could be removed were a hoot! Imagine my delight when I hadn't been allowed to eat or drink anything for days and was told I needed to have an upper GI x-ray done on Monday morning. How the heck was I going to swallow that stuff?

So that was the first thing I asked the technician when I was taken downstairs to have the x-rays done. He said I didn't have to swallow barium; it was more like a nectar, but it didn't taste like nectar. He saw that I had about the same amount of grey hair as he did and decided I was a kindred spirit. He told me about his previous line of work managing inventory in a warehouse. Several years earlier he decided to make a change and became an x-ray technician.

He was still telling me stories when the doctor came in. The doctor hardly had any hair, so he fit right in. So the two of them helped me to lie down on the table that raised me up so I could be x-rayed. They needed to see if the stitches were holding all around my small intestine before I got to eat or drink anything. The tech would ask me if I was in too much pain to lean to the left, then farther left, etc. Then he would move my body and hold on to me during the x-ray. The two men even did the old joke about, "We haven't dropped anyone this week!" They were great fun, and I got to go upstairs and start on a liquid diet afterwards. (I saw the technician at the hospital on 3/09/09 in the cafeteria. I thanked him for giving me the laughs I needed.)

*Nasal-gastric tubes remove liquid from the small intestine and send it out through nasal tubes that emptied somewhere behind my hospital bed. Without having them in place my abdomen would have been very distended from the bile that was coming out from my liver, but didn't have any food to work on. The nurse told me that Dr. DI is unusual in leaving those tubes in place for a few days after surgery. Other doctors remove them more quickly, and their patients get all swollen up. Dr. DI liked to use the nursing unit I was on because they understood his practice.

I also want to remember Alice. She was my primary nurse. She worked the night shift, and I saw her on two nights. She told me usually she sees her patients more often than that.

I wish she had been my nurse for one more night. That was the night I had to get out of bed and go to the nurses' station and insist that I get to see my nurse or attendant. Twice another attendant from across the hall had run in for a few seconds to help me, but then he would run back out. The last time he had placed a pillow firmly against my back, but got out of there so fast he left the door open. So I went to the nurses' station and insisted someone stay with me until I was 100% situated to go to sleep. My nurse appeared and stayed until I was comfortable. She had been with a patient that was isolated because of a contagious disease, so she had to put on protective clothing and stay with him for awhile.

Alice was there the first night I was in the hospital. She explained to me about pushing the button on the IV to release a dose of morphine. I don't remember anthing else about that night except God showing me my guardian angel. In the morning Alice was laughing when she checked the counter on the IV. I had pressed it 100 times during the night. I don't know how I pressed it that often, unless I pressed it while I was asleep. Alice explained the IV would only give one dose per 10 minutes. After that I tried to wait 15 minutes before I asked for more morphine.

The second night Alice was my nurse it was very quiet in the ward. My left wrist had gotten swollen and red at the IV. She moved the IV to a different spot. She also removed another IV that was near my left collarbone. It was held in place by a stitch. This was a special IV that was put in just in case I went into a carcinoid crisis during the surgery. The stress of surgery can cause a carcinoid tumor to release lots of chemicals, so this IV was installed so the doctor could send a bolus of Octreotide toward my heart if necessary. A carcinoid crisis can kill a person.

(A bolus is a big chunk of something. You can have a bolus of food moving through your small intestine, or it can be a big dose of a drug.)

So "Dr. Alice" operated on me in the middle of the night. This collarbone IV seemed like it had a tube in it to direct the drugs toward the heart; it wasn't something that could be taken out easily, or my day nurse would have taken it out. I laid there quiet and still so Alice could remove it. I marvelled at how quiet the ward had been for at least 30 minutes. Alice pulled the tube out and told me I was very brave. I said I figured it would be easier for her if I was as still as possible.

Back at Home

When I got home on July 2, 2008, Richard and Katie took care of me. I remember wondering if I would have trouble sleeping with the discomfort from the incision. Instead, I fell asleep two seconds after my head hit the pillow. I remember Spunky coming into the room to sleep by me.

A day after returning home, I was awake with very strong abdominal pain at 2:00 am. I turned to my Bible and looked up references to pain. They pretty much were all about pain being the result of doing something wrong. That wasn't what I was looking for; I needed some comfort from pain.

One passage sounded better than the rest, so I turned to Job 33:19 and kept reading.

Or a man may be chastened on a bed of pain
With constant distress in his bones,
So that his very being finds food repulsive
and his soul loathes the choicest meal.
His flesh wastes away to nothing,
And his bones, once hidden, now stick out.
His souls draws near to the pit
and his life to the messengers of death.

Yet, if there is an angel on his side
As a mediator, one out of a thousand,
to tell a man what is right for him
to be gracious to him and say
"Spare him from going down into the pit;
I have found a ransom for him."
Then his flesh is renewed like a child's;
it is restored as in the days of his youth.

He prays to God and finds favor with Him,
he sees God's face and shouts for joy;
he is restored by God to his righteous state.
Job 33: 19-26 NIV

I read the passage three times. By the time I was finishing the third reading, the pain was gone. That was the second time God answered my prayer for relief of pain!

At first, I recovered quickly. One week after my return home, Katie was leaving to go on the mission trip to Romania, so we went out to dinner to celebrate. I remember sitting up in a wing backed chair eating filet mignon and talking. In the next few weeks, I didn't have as much strength as I did in early July and I was baffled. Later, I found the weakness was because I was suffering from infections.

One month after my surgery, I was in the emergency room at UCI. I'd had a region alongside of the incision where it felt firmer than most of the incision. I thought it was scar tissue. After some days passed, that area felt tender to the touch. Then there was the day the area was red, hot, and swollen. That's when I went to the ER. The resident who had been with Dr. DI in the hospital drained the wound for me and prescribed the antibiotics. A few weeks later, in August, I realized I must have a UTI from using a catheter in the hospital, and I got that treated before school started. So I went back to work eight weeks after the operation in reasonably good health. Note well, I did not feel well at 6 weeks yet, so don't be discouraged if your recuperation takes up to the last minute to be complete.

God Reminds Me that He is There

During 2008, I realized that I had developed a greater trust in God. I knew it was different than having faith in God, so I looked in my Bible dictionary to see the definition of trust. My Bible dictionary said that trust is the same as faith; the two words have the same root word. But what is happening to me wasn't saving faith or healing faith. I already had those. I was learning that faith grows through experience. Now I was totally (at times) relying on God to figure out what was happening to me and to take me through it.

As I continued reading books that I was drawn to, I found an excellent explanation of trust in Joyce Meyer's book, How to Hear from God. In the book I noted that I read it on Oct. 3, 2008.

Quoting Joyce Meyer: "Many Christians memorize Proverbs 3:5-6 which says
'Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own insight or understanding. In all your ways acknowledge Him and He will direct and make straight and plain your paths.' But they tend to forget that trust is for the times they can't get answers as quickly as they want them.

It isn't necessary to trust God when we have full understanding and knowledge of what He is doing on our behalf. The Hebrew word translated "trust" in verse 5 means to be bold, confident, secure, and sure.* Trust is needed in those times when, for whatever reason, we are not hearing from God as clearly as we would like.

Before we hear from Him, we need to learn to rely on His character, ability, and strength during the times we are not hearing from Him. If we trust Him during those times, He promises to make clear the way we should go."

* Joyce's footnote: James Strong, "Hebrew and Chaldee Dictionary," Strong's Exhaustive Concordance of the Bible (Nashville: Abingdon, 1890), p.20, entry #982, s.v. "trust," Proverbs 3:5, batach, "be bold (confident, secure, sure)."

God had sent me the answer to my question, "What is trust?" I just had to wait a few weeks to find it.

One morning during the summer I was driving back to Orange to the medical center for a wound check. I was reviewing what had happened during the summer, and I suddenly began to panic about what would happen if there was a third tumor. After each surgery I hoped that it was the last one, but I was frightened because my tumors are less than 1 cenimeter across. How could the doctors find it? Where would it be? The doctors had removed the area in my small intestine where the first two tumors developed. A third tumor could be anywhere in my body and too small to show up on a CT scan!

Suddenly, I was aware of what was playing on my CD. delirious? was singing the song "Miracle Maker" The song is about the paralyzed man at the pool in Bethsaida. He thinks of Jesus as the miracle man and hopes Jesus will heal him. He watches Christ come closer and closer, and at the point where I tuned in he was singing, "I'm looking in the face of the Miracle Maker!"

I heard that and I totally relaxed. Yes, that was how the doctors would find the third tumor. The Miracle Maker would lead them to the tumor. I still believe this today March 23, 2009.

Symptoms Begin Again

School was to start on August 25, 2008 and my surgery had been on June 27, 2008. So I went into my classroom on August 20th to clean up and set up bulletin boards. I felt well enough to begin the school year, and things went well. By the end of the first week, I noticed that one of my cancer symptoms was back, but I thought it might have been from stress. Another week later, I still had that one definitive symptom that is always the first one I get, and the next week I started feeling the hot flashes. So I began the round of doctor appointments again.

Taking My Body Back from Cancer

2009-02-21T12:56:00.000-08:00

I'm looking back at the inches I have lost since I started going to Curves on July 7, 2004. I weighed 152 pounds then. I have a graph that shows a consistent decrease in inches from my beginning date until Nov. 2005. Then I struggled with going up and down for awhile. I remember my weight would keep going back to 138. My lowest weight and lowest number of inches on my body was the summer of 2007. So I have been thinner in the past than I am now.

I’ve been doing well at losing weight and exercising on the diet I began at the first of February 2009. In three weeks I’ve lost 5 ¾ pounds, taken two inches off my hips and 2 ¾ inches from my abdomen. I’ve lost an inch from my chest and an inch from each thigh. And I've lost a whole 1/2 an inch from my waist! Will wonders never cease? (sarcasm) To lose over 5 pounds in 3 weeks is unusual for me. Usually I lose 5 pounds in 5-6 weeks if I stay motivated. That’s IF I stay motivated.

I don’t feel deprived this time because I’m approaching this from a position of power. I’m claiming my body back from cancer. I was strong and fit before I developed the tumors, and I’m going to be strong and as fit as I can be with cancer. I realize I’m going to have to repeat this each time I have surgery or have an increase in tumors. However, right now I feel well enough to take on a challenge.

In the summer of 2007 I was finishing up three years of going to Curves. Five years earlier my weight had climbed to 166 and I didn’t want to see how heavy I had gotten, so I quit weighing myself. A few months later a group of women at church began a class to lose weight together. My goal was to lose 40 pounds, and in five years, I had done that; I weighed 127. My muscles were strong; I even had muscle definition in my arms and legs! In August 2007 I thought I just had to lose 3 more pounds of belly fat to be just right. I had worked out 300 times at Curves and had the T-shirt to prove it. So for the first time in my life I was slim and strong at the same time. And I didn't start excercising regularly until I was 51 years old.

By November 2007, I could hardly excercise at all. I would go to Curves, but be too tired to complete a circuit. In December I remember being in pain when I would work on the machines. In December I also began to have chest pains at times when I was excercising. This is when I acquired a cardiologist and a rheumatologist. My internist, Dr. B, was very thorough in trying to figure out where the problem was.

Now I have cancer. It began when I was at that strong place in 2007. My body was as good as it was going be. All I know now is the song about God that says,

"Let not the rich man boast in his riches. Let not the strong man boast in his strength... I will boast in the Lord most High; I will boast in the One who's worthy!"

Update 1/29/09

2009-01-29T16:53:00.000-08:00

The long-lasting shot of medication (Octreotide LAR) is beginning to wear off. I got the shot on 1-12-09 and it should last a month. I noticed the difference on the weekend and things have progressed since then. I have more weakness, I feel cold in general, my blood pressure is back up to 150/80 and last night I had a hot flash. Since Monday my brain has been foggier than usual: besides not remembering where I have put things, I am misspeaking or forgetting words that I want to say. My dizziness is bad enough that when I kiss Katie I have to brace one hand against the wall. If I pet the cat, I have to hold on to a chair. Also, there is a digestive symptom that is constant even I’m on the medication.

Yesterday I talked with my oncologist’s nurse. She was able to ask him questions and come back to me with the information. I have bottles of Octreotide and syringes at home, but I cannot give myself shots at home yet. I have to wait until I have the classic symptoms of diarrhea and flushing before I can inject at home. I had those symptoms on December 11th, and on the 13th I was allowed to start giving myself injections at home. On Dec. 11th, I even talked to my principal about not being able to work full time anymore. It wasn’t a matter of having to run to the bathroom; that only lasted an hour. I had gotten so weak, dizzy, and fuzzy-brained that I couldn’t stand up in the front of the classroom and teach.

The symptoms I have listed are NOT known by most doctors. Many doctors have never talked to a patient with carcinoid cancer because it is rare. From medical school, doctors remember that the two symptoms of carcinoid are diarrhea and flushing (red face). They mistakenly believe that everyone has those symptoms and if you don’t have them you don’t have carcinoid cancer; even though the condition (called carcinoid syndrome) only occurs in 20-30% of carcinoid patients. Last Thursday, a doctor interviewed me before an endoscopy, and when he said, “Do you have diarrhea and flushing?” I said no. He stared at me and repeated the question like I didn’t understand. When I explained my mild symptoms, he still had an expression like I wasn't telling him the right answer. So I get to teach doctors about my condition.

My Philosophy about my Cancer

2009-01-24T13:16:00.000-08:00

This is a tough idea to make clear. If I talk about loving Jesus so much that I am perfectly alright with going to heaven to be with Him and my children, then I sound like I want to die. If I complain about delays in getting tests or surgeries done, then I sound like I don't have faith in God's perfect timing.

However, I know that I know that God has worked this all out to be a part of His perfect will. He led me to go to in for a facial at exactly the right time for Sylvia to see I had jaundice. I got to see a doctor the soonest anyone had ever shown up with a diagnosis of carcinoid cancer. God led me to be at the right place at the right time so many times, I thought He was going to cure my cancer when the first tumor was removed. I expected Him to prove he was God by stopping the cancer right there. Why else had He brought me so quickly to a diagnosis?

I don't know why my cancer has gone on. Today, January 25, 2009, we don't even know what stage of cancer I'm in. I'm in 2nd, 3rd, or 4th stage cancer depending on where the third tumor is located. It is not in the same spot as the primary tumor, so I am definitely past first stage. If it is in my liver, then I am in fourth stage cancer.

There was a nuclear medicine scan that showed cancer in my liver: November 20, 2008. One 4-hour Octreoscan showed abnormal absorption of Indium-111 Octreotide in the dome of the liver . It did not show up in the scan after 24 hours, so my surgeon, Dr. I, thinks I may have had a false positive on the 4-hour scan. So we are going to run the scans again.

[Translation: I had a nuclear medicine scan where a radioactive compound was injected into my veins. It's called Indium-111 Octreotide. At 4 hours and 24 hours the technician scanned my body. The radiologist read the scans and said the first one showed that I had an area in the top of my liver that absorbed an abnormal amount of the radioactive stuff. The radioactive stuff is only absorbed by carcinoid tumors, so that means I had tumor(s) there. However, the scan at 24 hours did NOT show any abnormal absorption, so that means I did not have tumor(s) there. The radiologist wrote that it was possible the 24-hour scan didn't show the same area as was seen on the 4-hour scan. So we have to run them again.]

When I first found out that I had cancer, I had been sick for a couple months. The doctors searched to find out what was wrong, and I had more problems besides the tumor in my small intestine. My body began to hurt, and I began having pain in my chest when I would exercise. I remember being so scared on Thursday, January 3,2008. On Monday I had found out that I had a carcinoid tumor. I had a nuclear medicine test done Wednesday, Thursday afternoon I had several tubes of blood taken to see if I could get a definitive diagnosis of Sjogren's Syndrome, and the next day I had a stress test scheduled. I was really stressing over the stress test. I remember emailing friends to ask for prayer for my nerves and for healing. So I certainly have been frightened about my health.

However, my overriding philosophy has been that the health problems I have are God's will for me. In 2007 I wanted to be so close to God that I said I would give up my health (and other things) to be completely in His will. So when the cancer diagnosis came, I never blamed God. However,I pray for healing and so do my friends.

Although, being a biology major, I have to consider all the data. From the beginning I have considered that I might die of this. That is certainly a possibility. In fact, during the first months of having cancer, I learned more and more about heaven and felt more comfortable about going there. If you want to be with God, where else are you going to go? I will see my children there that I have never seen here on earth.

The idea that I am getting more comfortable with my death is hard for some people to understand. They say I should think positive thoughts, and when I talk about dying, I get shushed. I am being positive: I consider heaven to be the most positive place there is. People just have platitudes and attitudes toward death that they have grown up with, and it's hard for them to hear someone talk about her own death. Since I'm the one who is dying, shouldn't I get to talk about it?

Also, some people don't give me time to explain how God is going through this with me. They don't understand the benefits I'm getting by being close to God. I'm going to write some things in my journal that some people won't understand. All I know is that now I can say, "Jesus, comfort me!" and He comforts me. From my hospital bed all I could say was "Help me! Help me!", and He showed me an aerial perspective of how how close my guardian angel was to me as I lay in my bed. He was three inches away from me. I would rather be in love with Jesus than with anyone else I know.

And Then God 2007

2009-01-20T21:28:00.000-08:00

Going Back a Few Years

This is a journey that moved into high gear in 2004. God began to speak obviously to me about His plan for my life. To my amazement, God has a plan for my life. I had certainly heard that God has a plan for our lives; I had learned that at church while I was in high school. I just never thought there was any big plan for me, since I’m quite an ordinary person with no particularly obvious talent. I do well in school, and that’s about it.

I’ve gone to school with other students who were much more impressive. I went to high school with students in national debate competitions, candidates for America’s Junior Miss, basketball stars, and brilliant students who became scientists, lawyers, and more. At Cal Baptist College I was surrounded by future pastors and talented musicians and actors; God was certainly going to use them in their field. I majored in biology and taught science in middle school and high school. I can remember not even being sure that teaching was the best job for me. When I got discouraged, I would tell myself, “I can do this; other people can’t.”

In 2004, a few months after my mother had died, my perception of God changed. God had become much more approachable. I wanted to talk to Him more, and He wasn’t offended by anything I would say. Then I realized, as my relationship with my Dad became closer, I was drawing closer to God. There really is a connection. A person’s perception of her own father colors her perception of her heavenly father. As I spent much more time with my Dad,he accepted me and showed his love for me. So when I turned to God, I saw Him as loving and accepting me, rather than rejecting me for being imperfect.

Several changes have happened in my life since 2004; the current one is the change in my health. I have carcinoid cancer, which is a cancer in neuroendocrine cells. These cells are scattered throughout our chests and abdomens. They usually give of small amounts of serotonin and hormones that regulate many of the functions in our bodies. Unfortunately, when someone has a carcinoid tumor, the amount of the secretions from the neuroendocrine cells soars. The huge amounts of hormones and serotonin make the patient very ill.

I have a rare form of carcinoid cancer where the tumors are approximately the size of a salt crystal, yet they give off secretions and metastasize. Most carcinoid tumors are a minimum of two centimeters before they metastasize and make people ill. Also, they are large enough at 2 or 3 centimeters that doctor can find the tumors and treat them. The tiny size of my tumors keeps them from being visible on CT scans. It makes finding my tumors most difficult.

This is how it started.

April 28, 2007 I was praying in my bedroom. There is a concept in the Christian life that a Christian should be willing to give up her plans for her life in order to follow God’s will for her life. Over the years I had struggled with the concept of being willing to give up everything I wanted in order to do whatever God wanted. I had been willing to give up some things to God, but not all. That day I surrendered everything to God. The last treasures I had held back, I finally let go. The three things were: my father, my daughter, and my health. I would give them up to be in God’s perfect will. I felt a longing to be always in communion with God. I didn’t want anything to come between us.

I asked Him, “When I’m lying there facing the wall, waiting for my attendant to rotate me in my bed, will I still have You, Jesus?” He answered me with lines from a familiar song by Jeremy Camp and reminded me of the rich, young ruler who would not give up everything he had to follow Jesus. The wealthy young man walked away from Jesus in sorrow. He was not able to give up all he had.

In September 2007 I began to have a small change in my digestion. Nothing that hadn’t happened before. It usually blew over in a week. I didn’t think anything of it when it continued.

On October 28, 2007 I was sitting in the front pew during a Sunday morning service. After a few songs, I was impressed to pray for healing for myself, and I continued praying for four or five minutes—the entire length of one song.(That's a long time for me.) I sensed that an organ in my abdomen was malfunctioning even though I did not have any obvious symptoms. So I sat there with tears running down my face praying for healing, and claiming promises from Jeremiah. In particular, I claim Jeremiah 32:27,"I am the LORD, the God of all flesh. Is anything too difficult for Me?”

I did not know what was wrong, but I thought perhaps an old condition, called Sjogren’s syndrome, was beginning to attack my internal organs. It’s an autoimmune condition that I have had for possibly 20 years with mild symptoms. That Sunday I thought it had turned inward.

The following Saturday I had a facial, something I do every couple months. At the end of the facial, the esthetician showed me that I was jaundiced around my eyes. On Monday, 48 hours later, I called my doctor’s office for an appointment and got one that afternoon at 3:45. God provided so that I could see the doctor right away.

My Good Doctor in Riverside

My internist, Dr. B, ran liver function tests, an abdominal CT, and an ultrasound. I developed more symptoms on Monday, so it seemed possible that I had a stone blocking the duct that connects the liver to the small intestine. I still had jaundice around my eyes. The tests all came back negative. No stone was found, but the duct was 8.4mm wide, which suggested that a stone might have been there and passed through.

I remember Dr. B saying, “Your pancreas looks good”, which was my first clue that he had been concerned about it. When I did some research, I learned my symptoms were the same as those for pancreatic cancer.

Going on to See a Specialist

Again God paved the way, and Dr. B sent me on to Dr. H, a gastroenterologist, for more testing. I have known Dr. B since I was in graduate school at UC Riverside, although he has not always been my doctor. I appreciated that he respected my account of my symptoms well enough to send me on to another doctor. Also, I realize he knew more about what could have been wrong than I had imagined. I was not thinking about cancer.

It is now 13 months later and I still remember sitting in Dr. H’s office in November while he suggested a few more tests we could do. One test was an endoscopy to look at my stomach, and I objected because we knew from earlier testing that I didn’t have an ulcer. That’s the only thing I thought an endoscope would help diagnose. I didn’t know that an endoscope could go past the stomach and into the small intestine.

Dr. H said, “Well, if you don’t want to, we don’t have to do an endoscopy” and continued talking about another test. Then he said decisively, “We are going to do an endoscopy.” Thank you, Lord, for making sure I had the endoscopy done.

The endoscopy was done in Dr. H’s surgical center on December 26, 2007, exactly one year before this writing. A small nodule was found just past the stomach in the beginning of the small intestine. Dr. H took five biopsies of the nodule.

I returned home on the evening of December 30, 2007 and found a message from Dr. H on my answering machine. It had been left at 4pm and said the doctor wanted to share the results of my biopsy with me. I thought that it can’t be good when a doctor calls on a Sunday afternoon. But, then again, he sounded so cheerful. Maybe he just wanted to set my mind at ease so I wouldn’t worry over the New Year’s holiday. I called him back the next morning.

The biopsy had revealed that I had a carcinoid tumor at the beginning of the small intestine, the proximal duodenum. Dr. H reassured me, and said he would send me on to be cared for at UCI Medical Center in Orange, California. They would be able to remove the tumor. That was all I expected to happen.

My father is 84 years old. When dad was in his sixties he was symptomatic of colon cancer, so his doctor removed a few polyps during a colonoscopy. It turned out that there was cancer in the head of one polyp, but it had not spread down the stalk. That was my father’s bout with cancer. He has followed his diet carefully and gets all of his endoscopic exams done on schedule. That’s what I expected to have happen for me. I expected the doctor to go in, take out the tumor, and I would be done.

The second of January 2008 I was waiting to have a nuclear medicine test run on my liver. The technician would inject me with a radioactive compound that would give the doctors an image of how things were flowing through my liver. My doctors were still checking to see if there was anything impeding the normal function of my liver. It was a week when I would undergo a few tests. I was even going to have a stress test of my heart, because I had begun having chest pains that increased with exertion. I was frightened about all the things that could be wrong.

It seemed like I would suddenly be faced with serious health problems, just when I had begun to have faith in God’s vision for my life. For several years, maybe five, I had sometimes pictured myself speaking to groups in churches about what God had done in my life. However, as I sat in the basement of a hospital that day waiting my turn to be injected, I started to question if I would ever see that vision happen. It seemed like I was going to be disabled.

I had just prayed about my future and was still listening to God as I began to read a book that I had brought from home. The book is entitled, Bible Nobodies Who Became Somebodies. I had not read the book for 6 months and began reading where I stopped in the middle of a chapter. The page was about the boy who had five loaves and two fishes to help feed a vast multitude who had followed Jesus out of a town. Jesus took the boy’s food and used it to feed thousands of people.

God had sent me my answer. Even though I might not be well, God would use me for His purpose at the right time, just as the boy had been there at exactly the right time. It amazes me how God knows exactly where I’m going to be at a certain time and leads me to read exactly what I need at read at that moment. It also happened with The Purpose-Driven Life, books by Joyce Meyer, and many passages of scripture.

The following Sunday was January 6th and I was in church, as usual. I was very distressed about my health because I had passed the stress test, but a pain exploded in my chest when my heart rate went up and my blood pressure hit 200. The pain had started at the sternum and moved over the left lung. The doctor said nothing abnormal was showing on his machine, but I felt plenty abnormal. So I was concerned about the carcinoid tumor, my heart, and all the unknowns as I sang during the service.

On Wednesday evenings I lead a small group that studies the Bible and prays together. On January 9th, one of the ladies (Gerry) told what she had seen during the service on January 6th. While the worship team led us in singing, she sensed Jesus appear next to the worship leader. Jesus walked down the steps toward me and stood beside me as I was singing. My friend said Jesus came there to comfort me about my health. I was so overjoyed to hear that! Jesus had not forgotten me; He came to see me.

(What my friend saw that day is a similatude. It is not the same as a vision because there isn't anything to see. I had a similar experience about 2003. A lady (Vickie) from church had come to pray with me before I had a D&C done. Vickie had brought some oil and invited the nurse to join us as she prayed and anointed me with oil. I remember the nurse was so excited to pray with us! Just before the D&C, I was talking to the anesthesiologist, who was on my left, and the nurse, who was on my right. I thought it was odd that the nurse was standing so far away by my hand--about two feet away from me. She was preparing to do the IV. Then I felt Jesus was standing on the right in the empty space by my upper arm. I totally sensed a presence being there. There was exactly the space for Him to fit in there, and I turned and silently said to Him, "Thank you for being here." Then He left, and the D&C went fine.)

Going to UCI Medical Center

There is a prayer chain at my church. I had asked them and several other friends to pray for me as I went to UCI to see about getting the carcinoid tumor removed. The staff at the Medical Center called me and arranged for my appointment.

I was cared for at the CDDC at UCI Medical Center. That’s a facility for digestive diseases. On February 26, 2008 I went in to see Dr. L for an exam to find out if the tumor could be removed endoscopically. That’s what I had been told. I was very pleased when I got there to find out they could probably remove the tumor that day. After I was prepped, the surgeon introduced me to a doctor from Japan who was a leading authority on removing tumors endoscopically. He was visiting UCI Medical Center that week.

When we were introduced, I said, “That’s amazing!” The doctor got a slight smile. I continued, “God sent you to be here for my procedure today.” The doctor nodded.

However, on February 26th, the tumor was not removed. I felt okay when I went in for the exam, but I had been ill with a sinus infection. It was getting better; however I was not well enough. During the endoscopic procedure, I began to cough so hard that my oxygen level went down enough to concern the doctor. When I coughed, I would stop breathing. So the procedure was stopped before the tumor was removed.

The sinus infection turned into pneumonitis, a milder form of pneumonia. I spent most of March 2008 at home, getting strong enough to go through surgery and back to work. I was very disappointed because I got sick right at the time UCI called me to schedule the surgery! So getting pneumonitis delayed my surgery by three weeks. During March God chose to talk to me through books I would read. I would feel drawn to a particular book, even though it wasn’t on my list of what I wanted to read. I was planning to read a new book by Joyce Meyer, called I Dare You, but that wasn’t what God wanted me to read. I put it down after a few pages.

Instead God led me to read again in Rick Warren’s book, The Purpose-Driven Life. I turned to the chapter on "Transformed by Trouble", where I had found comfort before, but the comfort wasn’t there. Instead, I found what I was looking for in an earlier chapter where Rick translates a passage from Job 23: 8-10.
I go east, but He is not there. I go west, but I cannot find Him.
I do not see Him in the north, for He is hidden. I turn to the south but I cannot find Him. But He knows where I am going and when He has tested me, like gold in a fire, He will pronounce me innocent.

While I was at home and sick, when I would pray, God would not always give me an answer that I could hear in my head. A couple years ago I would hear His answer in the sound of my own voice. Now I usually have a thought that comes as an answer to my question. However, because I was frightened about my health I couldn’t hear from God in the usual way. That must have been because there was so much stuff going on in my brain. Also, God wanted me to get more information from Him than could be expressed in a sentence or two. He wanted me to hear a whole sermon. So to hear from Him, I would read books or Bible passages that I felt drawn to read. I trusted that if I had a strong desire to read something, that desire had come from Him.

(There is an excellent book How to Hear from God, Learn to Know His Voice and Make Right Decisions that explains the different ways God communicates with us. The author is Joyce Meyer.)