So now I'm hooked up to this pump, 24 hours a day for the next 7 days. It's dispensing 2-CdA at 1.2 ml/hr. That's about one big drop every hour. Wikipedia on 2-CdA:
"A purine analog, it... mimics the nucleoside adenosine and thus inhibits the enzyme adenosine deaminase, which interferes with the cell's ability to process DNA. It is easily destroyed by normal cells in the body except for blood cells, with the result that it produces relatively few side effects and results in very little non-target cell loss."
The pump weighs maybe 3 pounds, comes in a cute black fanny pack specially made to hold the pump, some extra AA batteries, and however much of the 4-foot tube you want to stow in there. You get to figure out how best to wear it: under your clothes, coming out the end of your sleeve or through your collar, etc. It seems indestructible, looks made to military specs. If something goes wrong an alarm starts to beep and instructions appear on the screen. The most common things are kinks in the tubing or air in the line. There's a 24-hour nurse help line.
So far, so good. I feel — absolutely nothing. I thought it would be hard to sleep with this thing, but I put the pump in the middle of the bed and really hardly noticed it except when turning over. No alarms yet.
Today I'm wearing it under my clothes, with the fanny pack in front. Wearing it in back seems too dangerous — easy to bang it into something — and makes it hard to sit down, anyway. I think I'll try to start working again tomorrow, but for today I'm just going to get used to this, take a nap, try to help Gabrielle, who has been working herself to the bone.
Luka's come down with a nasty cough, and we hear scary reports of a bacterial bronchitis making the rounds of Ann Arbor schools. So I'm quarantined upstairs, sleeping in the guest room to keep out of his way. Until Luka gets well, Gabrielle has all the childcare, plus everything else she has to do: errands, food shopping, cooking, organizing childcare and housework help, not to mention trying to do her job.
The food operation started up last night: friends and colleagues bringing meals to help out. Ann Z started things off with a delicious roast pork loin, green beans, and homemade applesauce. I did not expect to be eating so well!
Don't know who's reading this blog, but I want all of you to know — and there are dozens of you — how immensely, deeply, profoundly grateful I am for all your help. I'm swamped with emails and phone calls, so if you don't hear back from me right away just know that I am reading everything, hearing all the messages, and feeling amazingly supported and loved. Eventually I hope I'll be able to answer you all individually, but for now I have to focus on getting well. You're magnificent.
2 comments:
We're all thinking of you, Gabrielle, and Luka. I'm glad all is well so far. Hopefully, the treatment will continue this way.
Ivan
Paul,
I've been following your blog and keeping you and your family in my thoughts and prayers. Wishing you courage, strength and healing.
Take good care,
Maria
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