Brenda's War on GIST
by Brenda Bannon
BACKGROUND: Mike Prozan had posted as follows...
I saw a post on battle fatigue a few days ago and wanted to post.
With new treatments, many cancers which where previously untreatable are now manageable but uncureable. Including GIST.
Manageable is not consistent with the current psychological characterization cancer as a "battle" that we "fight" and "win." With the current state of medical science, most people here will never by "cured." So, psychologically, I do not think of GIST as a "battle" but rather as a part of me which like it or not I need to live with. Thus, considering the alternative, I look forward to pills, surgeries and scans for decades to come (well, really, I am hoping for a cure or more effective treatments to arise sooner).
Anyway, for me, it really helps with the psychology to stop "fighting" what is for most of us an unwinnable "battle" with respect to current treatment regimens. It eliminates an huge inconsistency and a lot of emotional fatigue, not at all to say that I do not get tired of the treatments and certainly would prefer if I did not need them.
Brenda replied with this essay
Hi, Mike. An insightful post, for sure. In many respects, I would agree with your post. This is not like a boxing match in which I will knock out my opponent in 10 rounds or so. However, I do see it as a battle . . . quite frankly, I see it as a war.
My metaphorical use of "war" is more like this:
In March of 2002 my docs found "innumerable" and "inoperable" nodules/tumors in my liver. In April, they were diagnosed as malignant neuroendocrine tumors with no known primary. A local oncologist told me I would slowly get worse, she would treat my symptoms as best she could (to keep me comfortable), and I would die. She didn't believe I would see 40 (I was 36 at the time with 7, 4, and 1 year old boys). I immediately fired this oncologist because her attitude and prognosis were COMPLETELY unacceptable.
I knew I had been drafted into a war, with my own personal battle being a small part of it. The war itself was on cancer, and the "enemy" I had been drafted to battle was GIST. The good thing was that I was drafted into the war as the General in my battle, and I realized I needed to find the best "2nd in Command" or "right hand man" to advise me.
I immediately began a search for the best neuroendocrine specialist/liver with unknown primary onc I could find and found Leonard Saltz at MSKCC. Saw him, he ordered another biopsy, by June I was diagnosed with GIST. His plan? Wait. Although Gleevec was standard protocol treatment at that time, and Dr. Maki and his team were at MSKCC, Dr. Saltz said that he would wait, because my cancer grows so slowly, and start Gleevec later when we really "needed" to. I didn't like his plan. I called MSKCC to see if I could switch oncs and get one of Dr. Maki's team members to head up my treatment and see me. At this point, I was searching to be cancer free. MSKCC told me that it was against their policy to allow patients to switch doctors. Yep, I fired them. Off to Dana Farber for a second opinion and consult.
If I was going to find a 2nd in Command for my Army, so to speak, he or she was going to be the best damned one I could find. So, we saw Dr. Suzanne George, a member of Dr. George Demitri's team at DFCI. First, she confirmed the GIST diagnosis. Her plan? Immediately start Gleevec. Treat my GIST as a chronic disease rather than a terminal one. Hope the research keeps up and I outlive my cancer. LOVED that plan. LOVED her! This General had a 2nd in Command.
Next, I had to find a local onc to help manage my disease and keep me alive. Given the rarity of my cancer, the huge tumor load I carried, and my general distaste for pessimism, I needed to find a local onc who would believe I could live until I was 90, who had enough humility to let someone else be the lead on my care, and whose interpersonal communication skills would allow him or her to communicate well with me, my family, and the rest of my treatment team (aka "Army"). I found that onc in Dr. Joseph Dudek at NYOH in Albany. He's still awesome! My primary care doc was already on board and his thoroughness the reason I found the cancer -- so I had him. Then I had the online support and information groups for GIST I joined, my fellow warriors. Later in my battle I would need a stoke specialist, an neuro-opthalmologist, and a neurologist to join my team for a year or so. They have since retired, ready to be re-called should I need them.
Over the years I have watched other "Generals" in this war die on the battlefield. I have watched them bravely go where no other (or few other) Generals had previously traversed. They brought us Sutent, and continue to bring us new options as more of us progress through Gleevec and Sutent and other options. War is hell, they say. I have cried many, many tears for those Generals who have given their lives for this war.
I'm an old General now, wading through the OSI-930 trial and doing my best to make it to 90. I am 42 and 7 months now, so I have a way to go. But every day I am here, every day I live life to the fullest, every day I see, hear, taste, smell, touch this beautiful world -- is one day closer to winning the war. Winning is curing all cancer. Winning my battle, or killing my "enemy" is finding a cure for GIST. Staying alive and active in the battle until we win is my job now.
None of us ask to be drafted. And, like all wars, some dodge the draft and run away; some begrudgingly obey the draft, but they don't fight; some choose not only to fight their personal battle, but the battle against the bigger enemy -- GIST -- and some choose to fight those battles and the war on cancer. But everyone of us helps give "intelligence information" for this war. Each one of us contributes in some way, and we are all in this together. On the front lines of this war shoulder to shoulder. I know we will eventually win the war on GIST, and I intend to be here to celebrate when we do. I also know we will win the war on cancer. Not so sure I will be here for that, but hope to be. I plan to see my boys through college, marriage, and to hold and spoil my grandbabies for as long as I possibly can. My oldest is only 13, so I definitely need a long-term battle plan. I believe I have one. Together with my faith in my God, the GIST in my belly doesn't stand a chance of winning.