And we weren't ready for her to lose all mobility, fail to recognize us, and slowly leave the world, piece by piece. Atul Gawande explains this type of struggle perfectly in his moving book "Being Mortal", which I read after Brenda's diagnosis (and think everyone should read)."The battle of being mortal is the battle to maintain the integrity of one's life," Gawande wrote, "to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be." When Brenda was diagnosed, she was covered by an insurance policy through her employer — until she couldn't afford it. Several pieces of relatively recent US legislation (flawed and as imperfect as our current federal healthcare policies may be) allowed Brenda uninterrupted treatment for her disease.Some 70% of those diagnosed do not live past two years, and less than 10% make it five years or more.Without treatment, these numbers dwindle to single-digit months or days.I am so sorry, John Mc Cain; no one deserves a diagnosis like yours.That is the first thing I would like to say to you and your family. While you had every right to withhold your brain cancer diagnosis of glioblastoma multiforme, or GBM, you and your family chose to share it, creating an opportunity to speak frankly about a notorious disease and its realities.
I also wish they'd facilitated the hard conversations with her and my father-in-law — early and consistently — about the realities of GBM and how the disease can impact day-to-day life.She passed away 363 days after her diagnosis, and just weeks after my wife and I learned we were going to have our first baby — her first grandchild.(My wife wrote a beautiful essay about this and her mother, and NPR published it.) Some doctors and patients call GBM "the terminator" because of its rapid onset and high mortality.GBM is considered a terminal diagnosis because it almost always comes back, no matter what treatment a patient receives.
"The recurrence of GBM is inevitable, its management often unclear and case dependent," wrote the authors of a recent study about the disease.I believe in the equal value of human life and, by extension, that everyone has a right to healthcare.