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!

Monday, December 27, 2010

Happy New Year!


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.

Wednesday, December 8, 2010

Chromogranin A and Octreotide Scan Results


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.

Tuesday, November 30, 2010

What Happens during an Octreoscan?


New Information! 3/28/2014 Things have changed in the 3 years since I wrote this. I find my cancer center doesn't take as long to do the Octreoscan now. I had the 360 degree Spect done only at the end of the 24-hour scan. Also, the scanner goes faster, so the length of time is not as long. At Cedars-Sinai in Los Angeles,they do Octreoscans at 4, 24 and 72 hours. But the real news is that this scan is obsolete, and will be replaced by the 68-Gallium Dotatate PET/CT in a year or two in the USA. It is already used in Europe and Asia. I would recommend the newest scan there is and at the largest medical center you can get to.
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.

Sunday, November 28, 2010

Carcinoid Status Update

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.


Tuesday, November 16, 2010

Finding Encouragement in the Bible


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.

Friday, November 12, 2010

Wow! Thanks for Reading Me in China!


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,

Wednesday, November 3, 2010

How my Medication works

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.


Sunday, October 24, 2010

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


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.

Friday, September 24, 2010

God Expects Me to Keep my Promise

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

Tuesday, September 7, 2010

Off to the Oncologist Today


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."

Tuesday, August 31, 2010

Am I Descending Into the Pit?

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.

Saturday, July 31, 2010

I had a Cool Dream

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. )

Tuesday, July 20, 2010

Halcyon Days

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.


Tuesday, July 6, 2010

I'm Having a Good Time!


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.

Sunday, June 6, 2010

Health Update June 2010


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.


Sunday, May 23, 2010

Life is Changing

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.

Sunday, May 16, 2010

I'm Making a Big Change


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

Sunday, May 2, 2010

Things are OK


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


Saturday, April 17, 2010

Carcinoid Update

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.

Gardener Sharon It is a beautiful day today!

Monday, April 12, 2010

I Don't See Him Shining on My Face

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 visualization like that comforts me.

I added the video from YouTube on October 19, 2013. It amazes me that 3.5 years have gone by since I wrote this post. Things are still not so good, but I'm not so sick to my stomach this year. Now my tumor has found other bodily functions to affect, but I still love these songs. Oddly, when I watched this video today the woman sitting here on the dock looks like me.


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

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.

Thursday, April 1, 2010

MRI Adventures


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

Sharon Joy

Friday, March 19, 2010

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


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.


Saturday, February 27, 2010

Ask a Question, Get an Answer

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

Sharon Joy

Tuesday, February 23, 2010

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


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.

Saturday, February 20, 2010

Finding Encouragement on the Internet


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.

Sunday, February 7, 2010

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

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.

Saturday, January 23, 2010

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

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!"


Mary Sitting at the Feet of Jesus

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.