She can’t cook.
She can’t read.
She can’t drive.
When I got back home to the PNW, I realized mom needed some type of neurological rehabilitation routine and we never received confirmation from the doctors that this retraining was available. Weird. It’s been two weeks since we left the ICU and there are still no news on the biopsy or scheduled cancer center appointments. This is discouraging and disconcerting. At least mom has my youngest cousin, codename Simba, helping her rewire her communication systems. The vocabulary flashcards seem to entertain her, even though she can’t see them very well due to the loss of half her field of vision on the right eye. She’d been having visual hallucinations or burnt on images since the first time she convulsed and unless she told you, you would’ve known she couldn’t see you standing by her blindspot.
Between the politics of the hospital, the laid back culture of the Island, and threat of hurricanes and blackouts we feel she would be better off with us stateside. Certainly, she’d already be in chemo and radiation treatments based on the newest protocols and trends. The neurosurgeon asked us to give him three months before moving her. Blood clots are the reason he gives us since the altitude and pressure differentials of the flight could cause issues. I offer up we can leave by boat, take a cruise. Classic engineer, can you tell? Everyone is surprised by my suggestion. Rushing the process is the name of the game at this stage. We don’t have time. Actually, SHE doesn’t have time to waste. The rest of us do, unless the universe decides otherwise. My blood boils. She’s more than a case study to me.
Overall I’m skeptical. The streak of bad luck years has turned me into a pessimistic realist. Although the surgery was a success, and my mom talks and walks with very few indications of her new limitations, I’m waiting for it to SNAFU quickly. She’s already on the verge of needing 24/7 supervision, a service my sister is reluctantly coordinating. Pull the money handle! When I was starting to feel smug, filled with the hope that the best outcome was achievable, that she could get another 18 mos of life, the phone rang. Twelve days ago we were leaving the hospital and there they were, again. Ugh! She was on her way to the emergency room sporting a rash that I suspected was a possible side effect of the oral anticonvulsant Keppra. Sadly, this side effect was accompanied by another bout of disorientation and confusion. It grimly escalated from there.
Her in home nurse caretaker and my aunt decided they weren’t going to take any chances with her health and sprung to action. I watched the phone like a hawk for hours, from my work desk 3,000+ miles away, hoping that this was just an overreaction on their part. There are unexpected cognitive deficiency episodes in brain surgery patients, natural and innocuous. This may very well be one of the many harmless episodes to come. Right? The staff confirms she had another convulsion, one so powerful it reset her entire operating system. Another couple of days at the hospital followed and my sister scrambled to get night nurses added to the roster. Damn it!
She doesn’t temper the mood with please and thank yous.
Lilo mentions to me, in passing, that she feels mom isn’t mom anymore. I vehemently agreed. Each episode takes with it an irreplaceable part of her. This version of her isn’t the one we had grown to love. The decisive and concise woman who used to cut me off when I took too long to get to the point has been replaced by a chatty teenager. She’ll spend 1.5 hours on the phone discussing beauty contests (Miss Universe Puerto Rico) and fun facts she picked up from watching too much TV. Getting her to concentrate takes some saint like skills. She is content not venturing out into the world and being a couch potato. Whatever is deemed not important or relevant to her will be forgotten, and whatever is will be repeated to us at least twice during the conversation. I can’t blame anyone in my family for disliking her bossy demeanor and exigent nature. She is the captain of a boat that floats listlessly through the water waiting impatiently for a port of call. Her manners tossed overboard. Time for some winds of change.
As we brace for the impact of the biopsy results and begin to accept and internalize her prognosis, I concentrate on devising a plan to make the best of the time we may have left together. Her birthday is on December 11th, almost three months from now, and although there’s always the possibility she won’t make it that far, we can always plan a way to surprise her. My only solace is that as the matriarch of the family she has insured herself, thus ensuring our collective financial success. The seasoned POTO logistics officer planned for this eventuality so far in advance all we need to do is execute her orders. She proficiently planned her life beyond this ephemeral existence on planet Earth; casket, burial and honors.
If nothing changed or unexpected bills suprised us there would be enough cash left over to cover her current debts and liabilities, with a little seed money to thank those taking such excellent care of her. Religiously, I’ve been apprised of the status of her accounts and affairs for the last two decades. I definitely had the finances down, setting up budgets and giving Lilo her marching orders. The deal had always been to train me as her second in command, her go to right hand, just in case this eventuality happened. Tears run down my cheeks as I realize I’m not ready to assume the crown. I don’t want to do this. Not now. Maybe not ever.
Another week passes…
The tumor turned out to be malignant, and extremely aggressive: glioblastoma. This type of cancer has a 5% chance of survival for people over 60. 🤬🤯 With a heavy heart I fully took up the reins and reluctantly accepted the royal responsibilities bestowed upon the oldest heir of the throne. Heck, it’s more like a hollow promotion, a pyrrhic victory. The cancer was forcing her to abdicate her throne instead of bestowing it ceremoniously. Medically and psychologically my mother should no longer be in command. Since Lilo was already in the Island visiting, she generously granted my sister a power of attorney to make the shake up of power official. I’m too far away to be helpful beyond phone calls and claims, as mom insisted I finished the MBA quarter. I’m grateful for my sister because this situation is more than any one human can handle. A veritable 💩 storm!
The road ahead is uncertain yet we remain hopeful. The love shared and given propels us into this great unknown new normal where grit and resilience will be key to keeping the faith throughout the storm. Nevertheless, she persists; she endures. If anyone can get the best out of the situation it is you, mom. I sure wish we didn’t have to get on this rollercoaster, that this was the result of a false positive, an error.
The story is not over, and we plan to go down swinging…
Today we fight. Tomorrow we win!