Living with GBM

 

Living with Glioblastoma Multiforme (GBM) 

Monday 01 October 2012

　
This essay was written six months before Michele died, when we had just decided to have her third (and final) major surgery. A month earlier, when things were looking very good and I was beginning to believe that we had finally controlled the cancer, Michele told me that she expected to die right after Christmas. I was floored and did not understand how she could come up with such foolishness when things were going so well. She was right. It was uncanny how, once again, she knew her destiny. She even knew it from the beginning. After her very first radiation treatment, she said that the radiation treatment was going to kill her. She was right then too. The radiation damage to her scalp prevented the surgical wound from healing, which led to the infection and her death. That summer, when I first drafted this piece, I believed that it was too depressing to post. Now, over two years later, I am trying to wrap up this blog. I am going to post it anyway; there is no longer a reason to put up a brave front. 

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I suppose that the first harsh fact that you realize when you have GBM is that there is no cure. Treatment can only delay the inevitable. GBM is going to kill you.

You cannot win the war. You might win a few battles, but GBM bounces right back and gives no quarter. It never gives up trying to kill you.

In a way, it does take prisoners. You are a prisoner to your treatment cycle and your whole life revolves around chemotherapy. You spend the better part of the first day of the cycle receiving chemical infusions, and then you spend days being nauseous, having gastrological swings, sleeping most of the day and still being so tired that you can scarcely wiggle.

After a week, you wake up feeling pretty good, and then you realize that you have chemo tomorrow. You brighten when you realize that the week after will be a rest week. You endure the second week of chemo. You cherish your “rest week” and enthusiastically stuff the week with living fully. Your general mood cycles in step with the chemotherapy cycle. Immediately after treatment, you often wonder if the treatment is worth all of the suffering. At some time during the rest period, you decide that it is and go on to another cycle. What else can you do? Give up?

After a few months of clean medical results, you begin to think that you might be beating this thing, this cancer. However, every month you grow a little weaker and friends notice a degradation of yet another ability. Writing, talking, mobility, and every aspect of a quality life are in a slow decline.

And so you continue with treatment. But GBM has not given up and eventually defeats that particular treatment. So you try a different treatment. GBM appears to be in remission, but then it rallies and somehow wins again. You then remember that GBM never goes into remission. So you try another surgery and another new chemotherapy. You keep repeating the cycle until you run out of treatment options. Your neurosurgeon and your oncologist both tell you goodbye since there is nothing left that they can do. You transfer to hospice care. Then, as always, GBM achieves total victory.

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2012 Postscript

For Michele, it was a two year progression of losing the ability to write, then read, then listen to audio books, then difficulty in speaking, then not being able to speak a sentence, then only being able to say “NO!”, then not even able to say that. And finally, not being able to eat during the last week as her body began to shut down,

It was a terrible experience to watch the love of my life slowly die. But her bravery and perseverance were inspiring. She never gave up. She never surrendered. An unrelenting superior force overwhelmed her.

Michele changed my life and now she is gone. She was the most interesting woman I ever met. Some of the best advice I received during this grieving period was “Don’t expect to get over your loss. Just try to get used to it.” Even that is very difficult.

RKS