Thursday, July 26, 2012

Day 40 visiting the hospice house

So, it's looking like next week may be chemo week. The end of the month when Ellie comes back from camp and has to get ready for school in one twenty four hour span and Emily has to get ready for school and probably leave within a day or two of Ellie starting middle school seems like a really good time for me to be maximally functional. If that is my goal, I will need to get cracking on chemo soon. I am suspecting that Dr. Hill will send me to chemo jail early next week.

Some interesting chemo trivia I picked up on pubmed. I don't think it's known for the cytarabine at the lower dose (which is what was included in induction, i.e., the chemo I already had, therapy), but at the higher dose that makes up consolidation therapy (what I have to look forward to), people seem to metabolize it at least partly by excreting it in the saliva. You may recall I spent a lot of the first course of chemo complaining about how salty everything tasted. I think I know why now. I really remember feeling like I could taste my saliva pouring into my mouth and tasting salty. Yuck. I also remember that the nurses were quite impressed by how much water I drank, I was trying desperately to get the salt taste out.

Otherwise, today I went to visit The Community Hospice House and also stopped by at the main Home, Health and Hospice office as a surprise visit. It was so nice to see everyone and talk a tiny, tiny bit of shop. A lot of people told me I should keep my hair very short even when it grows back. It's funny because for years, Terry, Emily and Ellie have been trying to get me to grow my hair out and I finally did so they could see for themselves how terrible it looked. And then it looked nice and I quite liked it so I thought, hey! I'll be one of those old ladies with a long, long braid. And then I got leukemia and now I'm not sure what I'll do when I have the chance to grow hair again. I guess I have a while to sort it out.

A funny thing about HHH is that I have been getting a steady stream of 1-3 cards/day, mostly from people there. It is a rare day that goes by without a card at all and the biggest single day was I think five cards. It really is as though there is a sign up sheet and everyone is picking a day, no more than three to a day and mailing me a card on that day. I asked a bunch of people who all assured me that, no, it was just working out that way. It is so nice to get a little collection of cards everyday. I had no idea how much they would mean to me.

Other activities for today included not one, but two trips to the car shop. First to pick up Emily's car and drop mine off, then to re-drop Emily's off because it wasn't fixed after all and to pick mine up because it was. Late in the day, Patrick dropped off his friend's book "When we were Kennedys" which I started and am enjoying. It was nice to see him. It sounds like he was not having the best day ever; any day that involves an ethics consult can be short listed as Not a Good Day (unless the protagonist is the one who requested the ethics consult). I also ate Chinese take out (on my list of things I wanted to do before I was re-chemo jailed). Yum, yum.

Tomorrow it's a quick visit with Debbie early, a (hopefully) quick visit with my dentist midday and then a planning visit with Dr. Hill in the afternoon, including bone marrow results. I'll let you know probably late in the evening tomorrow or Saturday morning what the word is.

I hope you sleep well, with minimal disturbance from the storms that I think are blowing into the SeaCoast.

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