Archive | July 20, 2017

Multiform gliomablastoma is evil

John Mc Cain’s cancer is a nasty, nasty killer. I know, it’s what killed my little brother. When he was first diagnosed at 33 he was put in a clinical trial and managed to survive 15 years. The only one to do so at the time but those years ran out and it came back with a vengeance. When he was first diagnosed it was inoperable because gamma knives hadn’t been invented so they couldn’t do anything.

Astrocytomas are star shaped tumours that spread fingers out through your brain. When it comes back it’s automatically stage 4 and classed as a multiform gliomablastoma. They now do the gamma knife surgery. Cam’s was in the left frontal lobe and was over the border into the right hemisphere when it came back. That portion of your brain is things like moving your right leg and right hand. It affects speech and word order. Cam’s thinking processes were fine but he would get so mad when he couldn’t remember the right word he wanted.

When he first had it they got his files to see if it was degrading his IQ, he had gone from 188 to 166. I used to tell him he was a quart low now. And to make it all more stressful my mom refused to have anything to do with him when he got sick. He had been her golden boy. Mom didn’t like kids that weren’t perfect. Since I was born with disabilities I was well aware of not being wanted but Cam wasn’t. He called me in tears once and apologized for not seeing that after he was abandoned by her. She refused to go to the hospital the night he had his first seizure to give permission to treat and it only got worse from there. She wouldn’t allow my dad to drive him to chemo and radiation one day a week. So my dad snuck out. It was me, my dad and three guys with AIDS who drove him and at one point Cam’s T cell count was lower than theirs. A grand total of 6. Normal is above 500.

Chemo and radiation takes your hair and if you are getting radiation they mark your head with indelible purple marker so they can always focus the machine on the same spot. So Cam, a man who up to then had hated hats started wearing a baseball cap. One day after radiation he was actually hungry so I was going to treat him to lunch at a sit down restaurant. We got seated in a booth and he had kept his hat on to protect his head and not to show the huge purple target on his head. A woman in the booth behind started to go off on men who wore their hat indoors and what bad manners it was and Cam sunk lower and lower and finally decided to go to the rest room. I went into warrior mama bear mode and went to her table and told her he was having brain cancer treatment and had to wear a hat to protect his head and how rude and cruel I thought she was being with her awful sanctimonious tirade that was way too loud  and very shaming. Karma is a bitch and she was trying to sink under her table too and she and her friend scuttled out of the restaurant right after that. Cam came back and took one look at me and asked, “What did you do?” I just smiled and said “the right thing”. I went off on her and I’m so glad I did, maybe she learned something for the next time.

He had hallucinations that the doctor told us just to go with whatever he said. If his arm was in the other side of the wall, we had to go get it. When pink elephants were dancing on his head, we shooed them off. You just do it.

And to make matters even worse it was during the AIDS crisis when men were dying right and left and before the diagnosis was confirmed doctors would assume it was AIDS and refuse to treat him if they found out he was gay. One flat out walked out of his room and said he was gay so he was dead and didn’t even examine him.

Multiform Gliomablastoma is nasty. You never know when you are going to have a seizure. You fight to speak and move your body the way you want it too. A leg will start to drag. A hand won’t cooperate.

Cam was supposed to go in for another gamma knife surgery and the afternoon before we got a call from his partner, Scott saying Cam had died. I remember running down the hall and thrusting my cell phone at Alison because I couldn’t believe what Scott had said. We were both packing to catch the plane to San Jose so we could be with him, instead we packed and cried our eyes out.

Cam had had a seizure that was really bad so they called 911 and took him to Stanford where he was supposed to have surgery the next day. He had been constipated and every time his bowels spasmed he seized. He was in terrible pain and they refused to give him any pain meds because he was supposed to have surgery. I think Scott told me he had 4 grand mal seizures. Finally Cam was exhausted and told Scott to let him go and he had one last seizure and died. That’s how it ends, in terrible excruciating pain.

Brain cancer is foul, it’s nasty, it’s cruel and mean and dehumanizing and painful and there is no permanent cure, only timeouts. They told Cam when he was in remission he was cured and he didn’t worry but 15 years later it came and took him. It is relentless and evil. And it still breaks my heart.