Tuesday, August 09, 2005

Chemotherapy begins-- even at home

Hello, dear friends.  Thanks for all the messages and good wishes that keep coming our way!  It’s been over a week since the last update, so it’s time for another one. The bottom line is that things seem to be going quite well!

I’ve now finished my first cycle/course of chemotherapy—that was Monday, Wednesday, and Friday last week.  Each of those days I received two 250cc. Doses of cytarabine—one at the Cancer Center in the morning, the second one at home in the late evening. Each dose took 3 hours to deliver, so I got to bed fairly late those days—well after midnight on Monday, a little after midnight on Wednesday, and just before midnight on Friday.

So far there haven’t been any of the really evil side effects—no nausea (yay!), no mouth-sores (also yay!), and so far not much more hair loss than I had pre-chemo.  The chemo does drive my blood counts down, so by the end of the week I was experiencing fatigue and shortness of breath because my red blood cells weren’t as plentiful as they had been.  But yesterday the doctor ordered a shot of something that boosts the production of red blood cells, and by mid-afternoon I was feeling better and stronger—so much so that I’ve scheduled myself an appointment with my trainer at the gym later this morning! I have a strong feeling that I’m going to experience muscle pain tomorrow morning: I have no muscle tone and I feel like all the weight I lost in the hospital (30 pounds) was muscle mass, leaving only skin, bone, and flab.  So we’ll be starting from not much at the gym today…

One of  last week’s chemo-adventures was that Anna and I learned to administer the home dose of chemotherapy.  Each day the nurse at the Cancer Center would send me home with a simple black fanny  Pac strapped to my waist.  In the pack were an IV bag containing the evening’s dose of cytarabine, which in turn was connected to a small pump about the size of the first transistor radio my grandmother bought me in the early 1960s; heavyweight surgical gloves to protect the hands against possible spillage of the drug—it’s *bad* for the skin; a syringe loaded with 10cc. Of saline solution  and two syringes with 55cc. Each of heparin—the syringes were for cleaning the “port” in my PortOCath after the IV was finished.  Oh, and I forgot the alcohol swabs for wiping the port down before inserting the syringes, and a little pink plastic needle to seal the tube from the IV bag at the end, to prevent any spillage.  Lots o’ stuff!

The IV was connected to my PortOCath before I left the Cancer Center, so we didn’t have to deal with that aspect—all I had to do get things started in the evening was to press two buttons on the pump and open two little valves, one on the IV line and one on my PortOCath.  That started the IV running, and I could hear a reassuring little whirring sound as the pump did its thing.  When it was finished, the pump made a sound sort of like a Parisian ambulance (which was very different from the infuriated noise it made on Monday night when I tried to restart it without opening those valves first; I had to restart it because I had forgotten to take my anti-nausea pill an hour ahead of time…).  When the IV was done and the alarm had sounded, Anna disconnected me, using the instructions she had carefully written down at the Cancer Center as the nurse demonstrated the process.  (There was a great moment of theater when Anna did the disconnect routine for the first time at the Cancer Center—announcing dramatically at the end, “Well, I didn’t kill him!” which had the other patients in hysterics and the nurses a little startled…)

A number of friends came by to visit during the week, and on Saturday night we even had a small impromptu dinner with a few people other than us.  These visits are terrific—starting to feel like we’re getting our life back.  At the same time it’s coming home to me that my life-- *our* life—has changed irrevocably, which is at once a daunting recognition and an opportunity.  So Anna and I are talking a lot about what really matters to us and enjoying each other’s company.  And one of the things that matters to us—it’s incredibly important—is staying connected with our friends.  I don’t recommend leukemia as a method for establishing and sustaining those connections (just like I don’t recommend it as a weight-loss program), but I wouldn’t trade the connection.  That sense of connectedness has been a great gift from all of you, and we thank you very, very much.

And that’s the news from this side of Lake Woebegone, where—you know the rest.

If you’re in Austin, please come and visit! Just give us a call to make sure we’re not sitting in the doctor’s office or something.  

Much love,
John, Anna, and Dillon


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