First, the bad news: I’m still dealing with an extremely aggressive brain tumor that’s eventually going to kill me. And the end is not going to be pretty. There will be continuing degradation in neurological function, leading eventually to diminished quality of life, physical incapacitation and ultimately a fewprecious, final days and hours bedridden and surrounded by murmuring hospice workers administering pain medication and doing whatever else they can to keep me as comfortable as possible until I’m dead.Now, the good news: I’m not dead yet. And I’ll continue to receive treatment aimed at extending my life for as long as possible at a level of quality that I can enjoy.
So…that’s how my MRI scan and follow-up consultation with my doctor went today.It was pretty much a textbook example of why a cancer patient riding the infinitely looping and twisting emotional roller coaster that is a recurrentGBM t must learn never to build mountains of hope that are too high e or dig pits ofdespair that are too deep based simply on the results of any single MRIscan. Because the results of these scans are really all the same:”You’re either going to live or you’re going to die.Rather, you’re going to live AND you’re going to die.We just don’t know which , and we don’t really know when. On the hopeful side, the new scan shows my chemotherapy drugs have continued to reduce the volume of the original tumor mass in the right temporal lobe of my brain, which one doctor once described to me as “pretty useless real estate.”On the bleaker side, the cancerhas now clearly infiltrated and grown into more vital areas of the middle brain and brain stem that so far have been spared from damage or unwanted pressure. Consequently I may begin to see neurological deficits compromisingthe right side of my body much as they have been compromising the left side for many weeks now.Remember my post about Half Ass? He could soon be losing even the sole remaining half of his ass that’s left Dr. George Bobustuc, my neuro oncologist, didn’t pull any punches about what this might mean. “This tumor has the potential to grow explosively, overnight,” he said. “You could fall into a deep sleep and never wake up.”Your caregiver my just come in one morning and find you. That’s some pretty scary shit. One day you’re a relatively happy, fully functioning human being and the next day you’rebasically just a 217-pound sack of potatoeslying between two snoozingJack Russell Terriers in the middle of a king-sized mattress, just waiting for a 140-pound Puerto Rican woman to decide whether to try to pick you up and haul you out of there or just call 9-1-1 and let local taxpayers pworry about it. About this time in my good-news-bad-newsmeeting with Dr. Bobustuc, I was starting to feel like I could have been either Larry or Curleyin one of those classic “Three Stooges” moments where Moe pokes them in the eyes to roust them with the command:”Wake up and go to sleep!”
None of thigrim scenario was put on any specific timetable, of course, because Dr. B. is not the one in charge of exactly when I die or anyone else dies . He has just pledged to keep treating me with chemotherapy as long as my body can endure it and there is no compelling reason to discontinue treatment. An example of a “compelling reason” would be if I could no longer eat, drink or enjoy any other regular activities, or if I already were bedridden.
Idon’t feel anywhere near that juncture just yet, so the entire discussion today seemed very theoretical. But I know Dr. Bobustuc well enough by now, and Itrust his judgment based on his experience in dealing with GBM patients to listen closely when he says how quickly such a declinecould get very non-theoretical. As a practical matter that means thinking about and making arrangements for end-of-life-care, most likely while continuing to live in my own home and soaking every ounce of enjoyment that I can out of every second of every day.Right now I intend to spend as much of that time as possible in the company of people I love. It’s that simple. That’s my bucket list. No jumping out of airplanes, going around the world in a balloon,bungee-jumping into a volcano or anything dramatic like that.
Meanwhile I’ll just keep chugging along day-to-day on chemo pills and Irish whiskey like I am now and wait for my next scan. I’m also trying to remind myself that nothing really changed between Monday and Tuesday. I just have more informstion now. And information is a good thing — it never really kills anyoneSo please, please, please don’t worry about me. I am not afraid. I still refuse to be afraid. That would be a fate much worse than just curling up to die. If there is any single thing anyone has learned fromfollowing my journey on this blog for these past two years, it is that. Do not be afraid. fear is a waste of time, and a waste of life.
I’ll be staying in touch here with future updates on my condition, medically, attitudinally and otherwise.