Quote for October

A Prayer for the Ephesians Eph. 3:14-21

For this reason I kneel before the Father, from whom His whole family in heaven 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--that you may be filled to the measure of all the fullness of God.

Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen!

Tuesday, December 27, 2011

My Dream where Everything was Beautiful

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.

Monday, December 19, 2011

Christmas Time

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.

Saturday, December 17, 2011

Take Care of Yourself

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.

Friday, November 11, 2011

Welcome to This Heart of Mine


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.

Sunday, November 6, 2011

PRRT Peptide Receptor Radionuclide Therapy

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,

Wednesday, October 26, 2011

What's Happening in This Blog

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.

Sunday, October 16, 2011

This is Different

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.
NOTE WELL: What was happening here was an overdose of Octreotide. I had to go through this extreme weakness twice before I was at the oncologist at the same time it was happening. He realized that the overdose symptoms of Octreotide are almost the same as the disease itself. The difference is the extreme weakness caused by the drug. I adjusted my dose to one injection of 20mg every two weeks. That is suggested by Dr. Eugene Woltering of LSU, It works well for me.
 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 lady that rides with me. 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.)

Tuesday, September 27, 2011

Scans are Done


"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,

Thursday, September 8, 2011

Current Chromogranin A Numbers


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,

Tuesday, August 30, 2011

The Voice of Truth by Casting Crowns

There is inspiration in music to help us keep going. I love this 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.

In the middle of the song it says:

"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,

Wednesday, August 24, 2011

New Octreoscan Coming and Chromogranin A Changes


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.

Wednesday, August 10, 2011

The Crumbs that Fall from God's Table

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.


Tuesday, July 19, 2011

One Month Later

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,

Friday, June 17, 2011

I've Passed a Milestone on my Journey

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.


Thursday, June 2, 2011

You CAN Change Some Things

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.



Thursday, May 19, 2011

We are Fine

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.


Saturday, April 9, 2011

The Joy that Music Brings!

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.


Thursday, April 7, 2011

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

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

Wednesday, April 6, 2011

You can Rely on God

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

Friday, February 25, 2011

What is Happening Now

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

Friday, February 11, 2011

Welchol works on Diarrhea


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.

Wednesday, February 9, 2011

New Data

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!

Tuesday, February 8, 2011

A Trip to the Emergency Room


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,

Tuesday, January 18, 2011

I Pray for You

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


Some Encouraging Words

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