what cancer feels like, part 5

I took quite a long break from writing about this, because my anxiety level has been pretty high. I didn’t want to start writing again until I felt ready to tackle all the bullshit that’s happened. Let’s give it a go.

So, to recap a bit:
January: Grammy was diagnosed with cancer
February: I found out about said cancer, mom moved back from Austin
March: Grammy started treatment, radiation first, followed by chemo
July: Grammy finished all her chemo, had to decide if she wanted to have full brain radiation
August: Grammy went through with the brain radiation, didn’t have many side effects
September: Grammy was hospitalized twice, first time for “dehydration”, second time for magnesium/sodium deficiency
October: Grammy was hospitalized in mid October after falling and smacking her head on my mother’s car. Grammy was hospitalized in late October after losing mental consciousness. We were told she had dementia on top of a number of other possibilities. They discovered she had a bowel obstruction as well as a spinal fracture.


So now we’re in the beginning of November. Obama has just been re-elected. Grammy is still completely incoherent and unaware of who we really are or what’s going on. Two days after Obama’s re-election, Grammy slowly started to come around. The two things she asked were, “Why was I mad at your grandfather?” and “What’s this doll?”
I mentioned before that mom had bought her a Cookie Monster stuffed animal. She loved to rub it on her bald head and hold it during her bouts of confusion. Now she didn’t understand why she had a baby’s toy.

The doctors attribute her mental clarity to the relief she received after her bowel obstruction and spinal fracture, both of which were causing tremendous damage to her body and mind. After she had a minor surgery for her spine and had various medications and a tube put into her stomach, both injuries started to heal. Perhaps this is why she started to come around. Perhaps it was just the increase in essential vitamins and fluids the IVs were giving her. Maybe her brain literally just snapped back into action. Regardless, she started to slowly come around.

It was slow, I emphasize this. As I write this, it’s March 24th, and Grammy still hasn’t recovered 100%. Will she ever? Maybe not. But the progress she’s made is…it’s almost unreal.

But I digress.

After Grammy slowly came to in early November, the doctors started to discuss some options with her. She had been bedridden for two weeks and was very, very weak. She had been weak before this hospital visit, and there was one option: physical therapy rehabilitation, aka a “step down unit”. With the damage that had been done, Grammy wasn’t ready to come home. Mom and Papa weren’t ready to handle this, either. She needed a wheelchair now, she couldn’t walk alone. She was off balance, so while she could hardly walk, she was a huge fall risk. Her mental capacity was not great. She knew who we were and where she was, and she wasn’t mad at Papa for an inexplicable reason. But, she had lost the ability to write, read for long periods of time, and answer basic cognitive questions.

There really was no choice here. It was just a matter of finding a rehabilitation center. Just three blocks from the hospital is Lexington House, a physical and cognitive therapy center that would work on muscular strength, cognitive behavior and memory, and self-sufficiency. Grammy’s GP recommended this place as the doctors and nurses there would be able to help her in every area of weakness.

Grammy was not excited. She was going to be living there, indefinitely, until she was strong enough to be released. It was bad enough she had just spent two weeks in the hospital, now she was going to be moved to another place for God knows how long. But, at Lexington we could bring her personal items, she had her own room, and we would be able to visit her literally at any time. If she wanted someone by her side at 4am, there we’d be.
The facility itself was pretty nice. It smelled kind of like a mixture of hospital and elementary school; cleaning supplies, presentable food, and plastic. Grammy had not been eating anything in the hospital, and understandably so; before she went into her semi-catatonic state in October, she’d had an unknown bowel obstruction and was in constant pain when she ate. It took a lot for her to even have a small amount of food.

The food at Lexington House was awful. And I don’t say this to sound snooty and deter anyone from going there if they’re in rehab, but sweet Lord it was gross. No wonder Grammy never wanted to eat when we saw her. Mom and I started asking her if she could eat anything, what would she have?
The first thing we snuck in for her? Popeye’s fried chicken and beans. She ate all of it.
Next, Quiznos soup and hot sandwiches. Again, she ate all of it.
Portillo’s came later, but that was just as welcome.

I felt a little pain in my heart when she asked for Popeye’s, following this with, “It’s Edith’s favorite.” Edith had passed away about 8 months ago, and Grammy had never been able to mourn her. She’d gone right into chemo.

Lexington House had activities to keep their patients/guests busy. And of course, our family is so damn awkward we went to all of them, as a group.
I’ll never forget going to Bingo with Grammy and mom. We wheeled her up to the small lunch room on the second floor and were met with eight people over the age of 80 and a slightly plump care worker.

…have you ever seen the film Cocoon? Yeah.

So it’s mom, me, and Grammy (the youngest patient by far), playing Bingo and making inappropriate jokes.
Grammy had a hard time keeping up with the woman calling the numbers. She often missed a few, but we wouldn’t correct her. She had to do it herself.
Papa joined up with us not long after and spilled coffee on the floor and table. The table was covered in plastic and had a wobbly leg. I could not stop laughing.

WE WON THE THIRD GAME. Our awesome prize was weeks-old Halloween candy. YES. Papa ate it.

After the Bingo game, mom played “Don’t Let the Sun Go Down on Me” on the piano in the rec room. We lost it when we realized the morbidity of the song we were singing, though no one seemed to notice.

The Lexington House experience was surreal. Grammy didn’t benefit too much from it all, as she wasn’t being pushed hard enough (ironically). She was still very feeble and not mentally strong, but she was strong enough to know that if she kept at it, she’d be able to go home. So she kept walking down the halls, doing the little mental exercises, and answering the PT’s questions. She had stomach and back issues throughout, but she kept at it, because she wanted to be home so badly.

The doctors told her she could have a four hour pass to go home on Thanksgiving. I spent the holiday in the city with my fiance, as Thanksgiving fell on our five year anniversary. I called the family to wish them a happy “We killed all the Native Americans, yay!” day, but I was told Grammy had to stay at Lexington. She was too weak to leave.
I thought about her appearance. In the past three months, she had gone from fairly healthy, to okay, to not so good, to near death; now she was climbing back up the hill. What had this brain radiation done to her? What had this cancer done to her? Why had it left everyone confused and without answers?

Isn’t that what science is? An explanation?

So little is known about what full brain radiation does to the body, and while we’re learning more everyday, we’re learning from the experiences patients are having. Grammy was literally changing every minute, and while it was for the good at the moment, we knew it could change. We all knew it could shift.

Towards the end of November, the doctors and PTs finally started mentioning the word “release”. What a fantastic word. No matter how you spin it, release is a comfort. Grammy started putting on makeup in the morning before her rehab, something she hadn’t done in over a month. Her skin tone changed; her cheeks had pink in them. Mom and Papa had to have a plan, though. She couldn’t leave Lexington until there was a continuous rehabilitation plan in order. Mom and Papa scrambled to find a well regarded (and nearby) center, and, thanks to our family friend Leann, settled on the Rehab Institute of Chicago in Willowbrook. Grammy would also have a live-in nurse, 24/7, until she was able to walk on her own and mentally handle any issues she may have.

But we moved forward. She came home on December 1, 32 days after she collapsed on her bedroom floor.

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