Jump to the bottom for the update to this post if you want to cut to the chase. I was waiting to post this until after my appointment in Boston on Thursday. I wrote this during the three weeks that I was waiting for results of path reports, and it was not a good time for me.
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The good news was that they were able to remove the whole tumor by laparoscopy. I have five slices in my abdomen. The surgeon had to take about 10% of my stomach, and he felt good about the margins being clean. Pathology reports will be available next Wednesday - five days out.
I felt my tumor. It felt like the baby's first few kicks during your first pregnancy. I could sometimes feel it under my hand, a couple of times actually saw the movement under the skin on my abdomen. These things grow on a stalk, and ordinarily it would have been floating outside my stomach, but it was floating on the INSIDE of the stomach. That's why I felt the "baby kicking." The surgeon explained to my daughter how he had to make a hole and push it through so that he could get to it from the correct side. I am not sure, but I think Val said he pushed it from the stomach into the abdomen. Or maybe I have it backwards. Doesn't matter - it's gone! I am waiting anxiously for the video. I'll get to see the whole thing.
So often, things are not as bad as one fears, but not as good as one hopes. This experience falls into that category. I was hoping that they would find the tumor was completely free of malignancy, even though everything I read (and what my oncologists told me) is that these are NEVER classified as benign. But four needle biopsies showed no sign of malignancy, and I had hoped . . .
So since the tumor is completely gone and the margins appeared to be clean, why should I care that the tumor was most definitely malignant? Here's the bad news. It is follow-up treatment that is the issue. Dr. M. from Harvard appears to have been right - this was a very aggressive tumor. Follow-up will be three YEARS of chemo, or anyway, that is the initial prognosis from my surgeon. More from Dr. M. the oncologist on August 30. My body cannot handle Gleevec, the drug of choice for these. Both my liver and my heart were rather severely affected by the chemo. It didn't really work that great anyway. The growth in the last four weeks (sans Gleevec) was pretty intense, recovering the whole loss during the 2-1/2 months of chemo, plus another 0.3 cm. So by the day of removal, it was actually 0.3 cm larger than when it was initially diagnosed.
I can thank my lucky stars that it must have bled while I was recovering from foot and ankle surgery, because in my boredom, I was well aware of some severe abdominal pain, and there were signs of blood in the stomach when I went to the bathroom. Without those signs, this could have grown quite a while longer. In fact, by the time I got to the gastroenterologist's office, the pain was gone, and I actually said, "Why bother? It must be a bleeding ulcer that is healing on its own." The doctor told me that her mother didn't want the test, but they convinced her and the test revealed that she had cancer. So she said, "Let's just do the test and then you will KNOW that you don't have cancer." Hah! When I woke up and they said no ulcer, I didn't have to hear more to know I was in trouble. Within three weeks, I was diagnosed with GIST, a sarcoma. Never benign.
I have felt so good since going off chemo, more energy, lost the chemo weight, no more Prinzmetal's angina attacks. The thought of going back on is depressing, and even more depressing is the thought that they will not be able to find anything that I can tolerate, hence leaving the door wide open for a recurrence. Sort of like having sex without protection. Only a 20% survival rate if it shows up again. I know, one day at a time, but I'm struggling right now with the uncertainty of my future.
I don't know if anything they find on the path reports will have any effect on the post-op treatment, but I'm leaving this in the draft folder until after my appointments back in Boston on August 30. Maybe there will be some good news then. In the meantime, I am trying not to think about it, staying busy, enjoying the boat and the pets, hoping the appetite comes back. I can eat just so much and the body says, "No more!" I'm there now. Four more bites of salad, but I just cannot do it. The door has closed yet again.
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UPDATE: Oncologist in Boston told me on August 30 appointment that it was in fact low risk, not high risk. No Gleevec. Just CT scans every six months for two years, then every ten years. I am cancer free! NO FOLLOWUP CHEMO!!
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