My brother David emailed Dad and me a link to an article by Lea Lane titled "My Husband Fought the Same Cancer as Senator Kennedy." Lane is the wife of Rabbi Chaim Stern, a fellow sufferer of glioblastoma multiforme, like Ted Kennedy, and like my mother. Rabbi Stern lived a mere three months beyond his diagnosis, eventually succumbing to pneumonia. We, too, were told that infection is the most likely cause of death for many patients in Mom's situation. I can only assume that Rabbi Stern underwent the same therapies that Mom received; radiation and chemo would have contributed to a depression of his immune system and would have made him susceptible to something like pneumonia.
Lane's article contains many painful parallels with our own experience. Her initial mistaken assumption that her husband was having a stroke-- followed immediately by his aphasia-- was hard for me to read, because this is exactly what we experienced with Mom. Because the article is so short, it doesn't cover the minutiae of what life is like when caring for a GBM patient, but it is nevertheless a good summary of the overall trajectory of this cancer. I recommend that you read it.
There will probably be a whole slew of articles linking GBM and Ted Kennedy over the next few weeks. I, too, have some thoughts to share about this topic, but will take some time to gather my thoughts before writing that post.
Significantly, Lane writes:
With a grim diagnosis you are at least spared false hope and the ups and downs that distract from the time you have left. Accepting the inevitable, you can focus on the pleasures of the past and the precious moments of the present, carefully avoiding the difficulties of the future. Every day, fully lived, is greeted with appreciation.
My family's burden is in trying to get Mom's circle of care on the same page. Many of her Korean friends still refuse to accept that Mom's diagnosis is a grim one, perhaps holding on to hope that she will somehow, miraculously, get better. For these people, "positive thinking" or a "good attitude" means denying the prospect of death, as if wishful thinking were enough to stave death off. But as I wrote before, that sort of thinking is misguided and unhelpful. If anything, it causes more stress and pain instead of providing comfort where comfort is needed. It has the further effect of making us realists feel more isolated: we should all be on the same page, but we're not, because some among us remain in denial.
Obviously, some level of denial is natural, but as with everything in life, there's a time and a place for its proper expression or indulgence. Wallowing in denial or wrapping oneself in vain fantasies-- this isn't living, and it certainly isn't loving. Jeongshin charyeo! as the Koreans say: Wake up. Snap out of it. You can't live life with your head in the sand. In the above-quoted paragraph, Lane expresses what a proper attitude toward this sort of cancer should be. I fully agree with her. This should, in fact, be our attitude toward life, cancer or no cancer. No one lives forever; you never know when your time will be up, so treasure each moment. Accept that death is the Great Door at the end of the road, and make this life as meaningful as you can.
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