Scans are Done

Hi,


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

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


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

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

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

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

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

God bless you,
Sharon

Current Chromogranin A Numbers

Hi,

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

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

So that was a normal number that is believable.

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

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

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

Best regards,
Sharon

The Voice of Truth by Casting Crowns

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,
Sharon

New Octreoscan Coming and Chromogranin A Changes

Hello,

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

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

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

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

The Crumbs that Fall from God's Table

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sharon

One Month Later

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

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

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

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

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

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

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

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

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

God Bless,
Sharon

I've Passed a Milestone on my Journey

Dear Friends,

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

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

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

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

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

Love,
Sharon

You CAN Change Some Things

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

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

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

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

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

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

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

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

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

Love,

Sharon

We are Fine

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


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


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


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


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

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

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

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

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

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

Blessings,
Sharon