So,This is How it's Going to Be? Day by Day and with Each Passing Moment

Hi,

Well, I guess the big experiment was a bust. A couple weeks after having my medication reduced by 6 mg per month, I am all the way back to giving myself two 200mcg shots per day at home. I am also getting a 20mg long-acting, repeatable (LAR) injection at the medical center every two weeks. So I am back to total of 52mg per month.

Unfortunately, I have had a couple of rough weeks. Last week I was ill for a few days, then this week I was pretty well Sunday through Wednesday, but sick for three days so far. Even on days where I don't camp out in the bathroom, I am still weak. I use the support of  my cane and my walker when I need their help. It's becoming more common to be ill. I am developing the philosophy reflected in the title of this post: so this is the way it is going to be.

Disclaimer! See the change that occurred just a week after I wrote this post by reading below! 8/10/13.

God is good. This morning when I woke up He brought to mind an old hymn:"Day by Day and with each Passing Moment." The link above has several great scriptures before the singer begins the song. Just wait, she does sing and the lyrics are posted. It's a lovely hymn from 1865.

You probably Do NOT want to read the section below unless you are a patient with bowel issues.

I must express my appreciation for Welchol one more time. From all the posts on this blog the one about Welchol being effective on diarrhea is the most popular. It is read every day.  So, let me repeat some information about it one more time.

I use the packet of 3.75 grams of the powdered Welchol and mix it with water. It is made of resin beads called colesevelam hydrochloride that attract cholesterol to cling to them. I was having frequent diarrhea a couple years ago and mentioned my problem to my cardiologist. The Holy Spirit must have impressed it on me because it busted into my thoughts twice while I was talking to him. After I told him, the doctor instantly lit up, and told me how this cholesterol-lowering drug also causes constipation.

Welchol is the reason I was able to sleep last night. I took a dose about midnight and slept until 8:50 am. It is effective for me 60-90 minutes after taking it when I have been in the middle of hours of diarrhea. If I have already emptied my gut, Welchol can hold back the next bout for 3-48 hours. Typically, it gives me one night's sleep or rest for a few hours in the middle of the day.

I hope this helps someone.

Post Script on August 10, 2013:
A week or so after writing the paragraphs above, I was doing better.  I had good health from late in March until July 7. For the second time in two years I had particularly good health for 3.5 months: in 2012 it was from about the middle of February through the end of May. I do not know why this happens, but I am certainly grateful for it, Father! This year we went on my "bucket trip" to France, and I only missed a couple of events.

As I was writing the original post in March, I came across this version of "Day by Day and With Each Passing Moment," but I uploaded the other one because the verses with it are encouraging. However, I do prefer this rendition by Russ Taff from his album Faroe Islands.

The Results of the Experiment!

Hi!

After one month on less Octreotide, the doctor and I have reached a conclusion. I will gradually resume using two shots per day of Octreotide at home until I can reach a happy balance that removes the dyspepsia and the weakness from too much Octreotide, but avoids the diarrhea and sweaty heat from the tumor!

Now, how will we achieve this perfect balance, you ask? For one month I have been taking just one 200 mcg shot per day about 10 am. I will begin to add in another 200 mcg about 10 pm on Mondays and Thursdays, and then do 3 shots per week. Maybe 4 nighttime shots per week will do the trick.

It is important to note that when my tumor is putting the chemicals into my bloodstream that make me sick, it is probably growing more capillaries, also. Octreotide works by decreasing the capillaries that supply carcinoid tumors. Therefore, when the level of the medicine gets too low in my body, my tumor might be growing.

In general, when I first decreased my shots at home, I felt stronger! I was going up and down the incline at the Grove Theatre where we have church without my cane. I even had my friend Raquel take my arm to walk down the aisle to her seat. Also, my upset stomach  went away after a week. (It was just dyspepsia. My stomach felt unsettled and some days I lost my appetite until after 12 noon.)

However, after 3 weeks of less medication, the cancer symptoms came back. I have had diarrhea on several days and the weakness that continues after it.  Plus, I can't go many places. And I get covered in sweat typically after 9 pm, when the medication in my bloodstream decreases. So the amount of medication needs to go back up, gradually.

Welchol still works for me! Thank God! See my other posts for what it does.

For patients who want to know the number of milligrams of Octreotide we are talking about, here goes: (200 micrograms is 0.2 milligrams)

0.2 mg aqueous shot at home every day
20 mg LAR February 14
0.2mg aqueous shot at home every day
20 mg LAR February 28

That is a total of 46 mg per month. I had been taking 52 mg per month by taking 2 shots at home per day. Now I have to figure out if 48 mg, 49 mg, etc., is the best amount for me.

This is something where prayer can be very effective so that God guides me to select the best amount of medication. Thank you for your prayers!

Love,
Sharon

Abdominal MRI 2013

For the last year I have been seeing my surgeon (Dr. Imagawa) at the University of California Irvine Medical Center every six months. I seem pretty stable, and my scans of all types don't show any tumors, so the doctor has decided to just see me periodically. Just because the scans don't show tumors doesn't mean there are no tumors. I have the microtumors of carcinoid.

When I went to see Dr. I in January, he noticed that I had not had an MRI since 2010, so one was scheduled. I went in on February 27 and had the scan done. I was supported in prayer by friends, and felt peaceful about going in. For the previous scan I had been afraid of claustrophobia causing me to panic during the MRI, so I had prayed, had asked 10 friends to pray, and took my regularly prescribed Effexor and muscle relaxant. That had worked very well, so I did that again. One other detail that really helped--I can see daylight if I look past the top of my head while I am in the MRI tube. It turns out there is open space only 9 inches away from my scalp!

So this time I was calm and the MRI even went faster! I brought in a CD by Mercy Me, and listed to the first two songs while the IV was put in and instructions were given. We were done with the scan before the last two songs were sung! I estimate I was in the tube about 30 minutes while last time it was 45 minutes.

It was good to lie in the MRI and hear "Where can I go from Your spirit? Where can I flee from Your presence? If I make my bed in the depths, If I go up to the heavens, You are there!" Those are lines from Psalm 139 (You are There) by Bart Millard and Kendall Combes from the cd MercyMe The Worship Sessions.

There is a beautiful version of the hymn Come Thou Fount on the same cd. The last verse is so exciting! "O that day when freed from sinning, I shall see thy lovely face! Clothed then in blood washed linen, now I'll sing Thy sovereign grace! Oh, I'll sing my song of grace, I will sing my song of grace! Come Thou Lord, O, do not tarry, Take my ransomed soul away! Come my Lord do not tarry, Take my ransomed soul away! (quietly) Send Thine angels now to carry me to realms of endless day." 

I found out the results of my MRI at a regularly scheduled visit with my oncologist. There is nothing new in the MRI. The same things are still in my liver. Now, I haven't seem the surgeon, Dr. Imagawa, yet. He might decide to do more exploring, and if anything changes, I will let you know.

God bless you!

Sharon