Monday, August 9, 2010

First Infusion

Our National Institute of Health (NIH) in Bethesda, MD, is something all Americans can feel good about. More medical advances than anywhere else in the world are developed here. It is my good fortune to be part of a research project testing the use of two drugs together to treat my highly unusual type of cancer.

The drug I have already been of for 1 1/2 years, Tarceva, is the one I have called my "little white pill". It is designed to poison my cancer cells and it does just that. The problem is that it also poisons other parts of my body and it does not kill all the cancer, just enough to make it grow slowly. Slow it has grown, but grow it has and without an additional intervention will at some point be fatal. Hence the reason I tried so hard these past moths to get into the the drug trial at NIH.

Last week I was at NIH for 4 days for poking, prodding, sticking scanning and analyzing. Throw in enough waiting to drive me nuts (short drive) and the first 3 days were full and wore me out. But then . . . . then . . . finally after all the effort I received my first infusion (means shoot up or IV delivery). I was anxious, scared, excited, willing, trusting, sitting in a laid back medical chair waiting while the additional drug was mixed. This drug, Avastin, is designed to cut of the blood supply to cancer cells. Apparently it is expensive so they don't mix it until I actually show up.

They injected it slowly to help watch for adverse reactions - 90 minutes. I dozed a little. And then it was done. I felt some elation, not too much, but definitely an up sense of accomplishment and hope. I rode the shuttle 2 miles back to my hotel, but feeling too good to sit, I went walking in the rain. Yup, I am from Arizona, but I did have an umbrella. Just happened to walk past a Sushi bar - total accident I am sure, but "as Long as I am here" . . . I felt like celebrating and I thoroughly enjoyed every bite!!

I slept well that night and packed for the plane home the next morning. 5 hour flight but passed quickly with good conversation with row mates. Flight was good and it was beyond awesome to see Jacki, I'm talkin' good to the bone and beyond. And then at home a couple hours later, one of their forewarned side effects kicked in - they even sent me home with a blood pressure cuff. I had high blood pressure for the first time in my life.

The doctor on call Friday night gave me good direction and my BP went down enough to go to sleep, but in the morning it was higher again. I called the on call doc again and he said he was going to call Dr Srinivasan, the Head of Research on this project. The guy called me. He walked me through the entire rest of the day, adding small doses of BP medicine as we went, until at 8:30pm my time, ll:30pm his time, my BP was again low enough to feel safe sleeping. At the beginning of the day, I was clueless about high BP - scared. At the end, I knew he cared and was there for me and I felt safe. I have his personal cell number.

I know I have the chronology a little wrong, but the bottom line is the BP symptom started sooner than expected. They stepped up to the plate and hit a home run for me. I am being treated by highly trained medical professionals doing what they love to do, and getting to do it unhampered by insurance companies. The difference in care from this patient's perspective, between the people at NIH and my insurancized (made that one up) oncologist is . . . well . . . like love or money. Thanks!

I keep taking the little white pill, I get and infusion of Avastin every two weeks. The drug trial question then is, are the two drugs together successful enough to warrant going through the side effects. I am game, and your prayers are requested and welcomed, I love you too!
Bill

3 comments:

  1. Sure glad you're home, Bill, and happy that you have another weapon for conquering the big C! My love and prayers are with you as always. Mom

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  2. Wow, what a ride...

    Glad your back in Jackie's arms!

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  3. Good luck with the new combo, Bill. Thanks for the update, too. Sending love and healing prayer, Pete

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