Leonard Cohen
Day 4+ (96 to go)
A rough night, but the storm clouds are parting and I am enjoying my hour unplugged. Every day, I get some alone time from Ivy, not that I don't love and appreciate the girl. She gives me her all, 5- 7 bags worth at a time, snaking through Y connectors, pumping 7/23 (remember my one hour of detachment), but love is a two way street, and I can only take so much giving before I feel smothered. Not that I don't give back. I give my very blood. Twice a day, noon and midnight, they check my chemistry and the cell counts and the levels of the various poisons coursing through my veins. But my sweet Ivy, in order to do that, I must first be unhooked from you just for that minute or two, for you, unlike the Hotel California, are programmed never to receive. And what do I do during that freedom hour, usually in the mid morning? I do my weight training, but better than that is the sweet simple pleasure of a long hot shower, and a short cold one. And then I walk the halls, 4 laps of the east and west wards, enjoying a detour to the lobby to see the hills of San Gabriel, and if my stomach and head are not acting up, I might dance a step a two. The very best of all are the times I get to hold my wife's hand with mine in a blue latex glove. "Dance me to the end of love." One of is always masked and gloved. In the room, it is my visitors, in the halls I am the bandit. More than fresh air, I miss skin to skin contact. Which I take as a sign of health. I thought chemo was supposed to squash those ambitions, at least for a while. My labs remain remarkably good. My bone marrow is still keeping my platelets above 200,000 and my Hgb. above 11 grams. White count is 1.2 so I can still leave the room. My nadir, my window of vulnerability before the transplant kicks in and starting producing my brand new leukemia free blood elements is getting shorter and shorter. The typical nadir is 10-14 days post chemo. I am now 8 days out from my last dose. I'd be lying if I said, despite countless reassurances, that I worry that maybe the chemo was a touch too gentle and will not adequately suppress my own cancerous marrow. Was the reduce intensity conditioning reduced too much? I must trust the doctors and stop being one. So let me return the image of the burning violin and the dance to the end of love. That is my dance and it is a very long and slow dance. 40 years or more.
4 Comments:
Just to give you a reference. 7 days after my first round of RFC my platelets were 153,000 (up from 98,000). My WBC was 15,500 down from 20,000. My RBC, HG and HCT were unchanged and in the normal range before and at day 7. I emailed you an Excel file denoting all of my CBC’s over the last three years for comparison.
Keep up the good work.
Your CLL Friend
Robert and family
Well, if we're on the theme of oldies but goldies, Brian, we went to see Taj Mahal last night at the Montreal International Jazz Festival (Place des Arts). And did he rock!!!! Did think of you and the old Prince Arthur Street daze...
Hang in there, mon ami.
Dear Brian,
My dear husband, Kelly, has just recently completed his first round of FCR. He's a pretty sick puppy just now, but he never forgets you and prays for you daily. I'm sure God's ear first hears the prayers of those who are ill but whose hearts are with another.
Brian, your writing is ..... well, simply lovely. I'm waiting for your victorious recovery, when your words will at last be safely ensconced within two covers.
Jan Buskell
Brian, Patty and all:
Sounds like you are all hanging in there pretty well. Thanks for the posts tolet us know how you are doing, and the pics leading up to "the event." Keep up your strength and the latex gloves on!
xo
Sandy B.
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