Having a brain cancer is no fun, particularly a glioblastoma which is a particularly aggressive form of brain cancer. But all things considered, having endured thirty-one radiation treatments, I’m doing pretty good.
There is some small chance that radiation and chemotherapy will kill any of these tumor cells that are left. While there is nothing out there to cure me of the disease, with my general good health doctors may be able to kill or at least immobilize any remaining cancer cells, which is not quite a cure, but means I might not die from the disease.
The radiation treatments were something of a trip. The best part is that I only had to travel two miles to the local hospital and I was usually in and out in twenty minutes. The X-rays pointed at my head though were obviously powerful. There was the loud buzzing sound during the radiation and a funky smell I noticed as soon as it started. Toward the end came the hair loss, most of it occurring in just a few days. About two-thirds of the hair on my head is gone, largely near where the radiation was done. I get mixed opinions on whether it will grow back. Most physicians say it will in time but there is some dissent. I’ve always had a full head of hair, so to me the change is startling. While not ashamed of it, while out and about I prefer to cover my head with a baseball cap.
Although the radiation and chemo were no fun, it could have been much worse than it was. I tolerated Temodar, my chemotherapy drug, pretty well. I felt slightly queasy at times. The larger effect was constipation, caused by the drug used to help me from feeling queasy. It took a full week to feel “unplugged”.
With the end of the radiation, the chemo stopped too. The chemo will come back but I have to wait a month or so for a follow up MRI. They like things to settle down before they take a baseline MRI. I’ll get MRIs every other month and they will assess next steps then. The chemo dosage will go up, but it will be roughly one week out of a month. The rest of the time I should be drug free.
Otherwise I’m back to my old self and in some ways better than ever. I get my four mile walk in most days. I feel more vigorous than I did before the surgery, which is not surprising as the brain tumor was removed. Good health is a good sign of a prolonged life. Still, it is a glioblastoma, so it’s more likely to come back than not. I turned 66 recently. I’m hoping I’ll make it into my 70s but making it to my 80s looks very problematic.
The day after radiation ended, we drove to Massachusetts General Hospital in Boston to talk with my oncologist. I had lots of questions now that I spent two months dealing with the disease. I encountered two second-person stories locally of people who had survived a glioblastoma. As it’s not curable, how is this possible?
Sometimes treatment kills or immobilizes the blastoma cells so they die or can’t spread. But in most of these cases, it depends on what you mean by survive. Often, it means something else kills patients first. Many cancer patients are older than me and dealing with other diseases. If one of them kills you instead of the glioblastoma, technically the glioblastoma did not kill you. It could also be the time range. There are cases where patients have ten or more years of remission, but they are few. Nonetheless, due to my otherwise very good health, I should be near the top of the bell curve. If someone can survive it that long, it’s more likely to be me than not.
It’s clear that in the short term it’s unlikely to kill me or impact me much. But of course you never know. For this year I’m assuming I will be minimally impacted. This means our Alaskan cruise in May is on and I am thinking of another one in August of New England and eastern Canada that’s easier to get to. At present there’s no reason to sit at home and not enjoy life. The key is to trust your doctors, hope for the best and chase away fears of mortality.
I’ll be a cancer survivor, but the question is probably how long I will be one and how long I can enjoy life largely as if I didn’t have it. That requires a certain amount of disbelief, something at the moment that I seem to have in abundance.
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