Getting to Where I Am Now

(zebras in a stable)

Last summer I received an email from the Carcinoid Foundation with an offer from the National Institute of Health/National Cancer Institute out of Bethesda, Maryland.  The offer was for a review of my medical records and a tumor review to see what other treatments I could possibly use in addition to/conjunction with my current treatments. Dr. Jaydira Del Rivero, one of the top Neuroendocrine Cancer  doctors in the United States was overseeing the tumor reviews.  I spoke about this offer with my oncologist who encouraged me to apply for the review.  After a telephone interview that picked my brain for information from the last eighteen years, I was accepted and was asked to sign releases for my records to be sent.  It took until early November last year to get all my records and images to the NIH/NCI for the review.

Two weeks after all my records were sent in, I was told the best option is the Cap/Tem* series of oral chemo (the Cap portion would go for two weeks a month and the Tem portion would be the last five days of the Cap portion).  My oncologist  recommended that I begin with the Tem only to see how well I tolerated it. She sent in the prescription to the mail order pharmacy and I started with my first round of Tem in December.  

In February, I was struck with a nosebleed that lasted 24 hours and resulted in my platelets plummeting to a dangerous low--nearly needing a transfusion.  Here's the thing about platelets--too many and blood clots can occur, too few and blood doesn't like to clot. Because of the platelet issue, the doctor decided it was too risky to add the Cap portion of the oral chemo, and I had to postpone February's  Tem for a week, until my platelet count came back up to a safer level.  I've done weekly blood counts from then until June when my oncologist felt they were stable enough I could go to once a month blood counts. One of the major blessings (I know you will say every blessing is a major one and there are no minor blessings and I agree) is that my clinic has a satellite office here in Ephrata, where I can drive for five to ten minutes and get my blood drawn instead of the half hour it takes to go where I see my oncologist. 

One of the gastroenterologists I had seen was concerned for the amount of radiation I was getting from my CT scans and felt that two CT scans a year were too much.  My oncologist said that the CT scans were getting hard to read because of the ascites, so she would order MRI's instead--at a much lower radiation level.  

My last MRI showed stability in my tumors, but no shrinkage with the Tem.  My oncologist then recommended that I discontinue the Tem as the risk-reward ratio wasn't worth the effort.  So here I am today, still stable, but not doing oral chemo.  And I'm okay with that.  I'm okay with not losing a week to the chemo, not feeling blah all the time, and not messing up my sleep cycle--because it did mess with my sleep quite a bit.  Would I do it again knowing now what I didn't know then? I think so, simply because I needed to find out what I didn't know.  Does it change how I feel about my situation, in some respects, yes it does.  I feel like I tried on the chance there would be change.  That there wasn't any change doesn't disappoint me, I'm happy to be stable.  

*Cap=Capacitabine aka Xeloda; Tem=Temozolomide aka Temodar

Today's funny:  What do penguins get for lunch at the zoo? Half an hour, the same as the zebras.