All stains were done on the tumor tissue that could be done and all tested negative. Good news? Nope. The tissue was obvious that is was not of the brain, therefore it came from somewhere. Because of the nature of brain tumors the tissue doesn’t freeze well and sometimes you cannot get a good result. That is what happened in this case. They know it came from somewhere, they do not know which organ. Yippee.

Since they know it came from somewhere, they know the only route to the brain for a lovely cancer like this is the bloodstream. If it came once it can come again. Therefore the first step is radiation of the whole brain. It will start after the staples come out which is around 14 days after surgery. We are 5 days post-op now. Fifteen to 18 treatments on consecutive days (weekends off). Each treatment to last 1-2 minutes. Redness at the site of treatment, fatigue especially in the morning, occasionally peeling at the site. Total loss of hair, which will grow back in 2-3 months and may grow back thinner than it is now. My mother presurgey had a very generous head of hair so some thinning would not devestate her. The totally bald does.

After that will be chemo or radiation if they can find the sneaky-ass hiding cancer, general chemo if it hides better than a scared little boy at Neverland Ranch. No clue how much or how long. She will not do it for long, this I know. Here’s hoping it is a short treatment. We’ll deal with that when we ge to it, though.

We talked her into staying in hospital for rehab. The PA explained and stressed the danger of falling. It is isn’t a “Gee, we think you’re teetering all the time, it’s a if you fall and hit your head after surgery it could be a devestating event.” And he told her that outpatient treatment which starts later and is not as intense gives her a lesser chance of recovering her memory and the lapses in cognitive thinking skills she’s had since the surgery. That got her halfway there. Exasperated I asked her what she would tell me to do if the situation were reversed. She tried to shrug and said, “I don’t know” and couldn’t even get through that with a straight face. I said, “The hell you don’t know what you’d say.” Then we all laughed and she agreed the intense therapy was better in the long run.

PT, OT, and speech. Morning and afternoon sessions. The nurse told her she’d be buff when she left and almost left right then. lol

She’ll still come stay with me after the rehab. She’ll need help and rides to radiation and later chemo. We’re focusing on the rehab right now though. Five days post-op means we’ve hit the peak of the swelling caused by the surgery and improvements should start tomorrow in memory, balance and cognitive skills. Rehab will enhance and maximize that. Rehab first. We’ll take the next step when we get there.

Today was my breakdown. I finally cried. It finally hit me that my mother may actually die even if we do everything they want fully and completely. That maybe the assault of brain surgery was for nothing. This thought had escaped me until today. I was toddling along like everything of course would be okay because we were vigilant and found it early, sought treatment immediately, she sailed through her surgery – and the possibility of death snatching her in spite of all that effort just eluded me. Until today. I’m counting on that not being true. I’m believing that she will get 5 good years from this. Really, that is all she’s asking for. They’ve not said anything about chances or prognosis and she is not asking. So forward we move, hopeful, brave and scared all at once.

My daughter says she will never go to a doctor on Thursdays – Thursdays are now bad for doctors in her mind. Last Thursday I got my diagnosis. This Thursday I was supposed to get my MRI, but did not because I canceled it until next Thursday (oops – bad move). My mum has been increasingly complaining of not being able to think of a word when she wants it, easy normal words, too. And she does the NY Times crossword every single day and ALWAYS completes it come hell or high water. The last month she has had difficulty completing it. First we laughed it off as age-related bullshit. Then we blamed the puzzlemakers for obscure (yeah, as if they usually aren’t) clues. But her stopping to think of simple words scared her. I saw an ad on tv for Aricept for memory/beginning alzheimer’s (now being used for MS, too) and remembered a customer of mine extolling its virtues for his memory.
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