Silliness is Golden :: diaries :: diary :: life :: hcl

Wed, Mar 22, 2006

where to find the Silliness

Mr. Silliness is now situated in Mt. Auburn Hospital, room 804. His direct line is 617-499-5263. He'd love visitors, but please call first, as there may be restrictions on who can come and on what you can bring.

--Assistant to the Silliness

[/diaries/diary/life/hcl/] 2 comments

Sun, Mar 19, 2006

Return of the Unwelcome Guest

On Sunday, Spike pointed out a surprisingly dark bruise on my arm. I realized that my energy had been kind of low lately, and that I'd been feeling an occasional faint pain in my lower left ribcage, which I'd been attributing to digestive discomfort, but might be consistent with a swollen spleen.

On Tuesday I called Dr. Weissman's office, and Jill, her receptionist, who calls me 'honey,' rescheduled me from a June appointment to a quick Wednesday once-over.

Wednesday morning, Dr. Weissman told me I looked fit to her, but I should get some blood drawn, and she'd get me the results by that afternoon.

Friday ,morning, I finally managed to get Dr. Weissman on the phone. The hairy-cell leukemia is back, and I need another week of chemo. We caught it even earlier than last time (I'm not even technically anemic yet), so it isn't urgent, but the sooner started, the sooner done.

After talking wiht Spike and thinking for a few hours, I decided to give myself a few days to get things in order (a lot of apartment cleaning should happen before a neutropenic person tries to live there), and check in on Wednesday.

The therapy will be the same as last time: 168 hours of Cladribine drip in a PICC line to my heart. It's uncertain whether the fever that kept me in for an extra two weeks two years ago was due to an infection or an allergic reaction to the chemo, so I'll also be on an anti-allergic drug.

Visitors will once again be welcome. If last time is any indication, I'll be in better shape earlier in the week if you want to see a lively and entertaining Sebbo in his hospital gown. I won't know my room number or phone extension until I'm settled in on Wednesday, but i'll get that info out when I have it. Thanks to Thomas' loan of a laptop starting Thursday, I also hope to have a little net access, though that's not certain.

The whole thing is scary and stressful, of course, but not nearly so much as last time, since it's no longer a leap into the unknown. With a bit of luck, it should be nothing more than a big obnoxious inconvenience this time.

[/diaries/diary/life/hcl/] 5 comments

Fri, Jun 11, 2004

Brief Biopsy News

I just had my follow-up bone marrow biopsy, and it was even quicker and smoother than last time. Dr. Weissmann kept trying to explain the terminology to me, and I kept not getting it, but only ended up having to get the Big Needle, not the Really Honkin' Big Needle. I should have taken a picture of them--I'll troll Google for a good one later.

I'll get the results late tomorrow or early the next day. My chance of a full remission verdict is about 95%.

In other news, it's damn hot today. Perhaps you've noticed.

UPDATE:The photos don't give a good sense of scale, so here's a drawing:

[/diaries/diary/life/hcl/] comment

The Last HCL Update?

Dr. Wessmann called before I'd had my first glass of iced coffee this morning:

"I have great news from your tests. Your counts are fabulous! You have less than 1% hairy cells in your marrow."

"There are still some alive!?"

"Yeah--the chemo allowed your body's immune system to fight the rest of them from here on. Anything up to 15% hairy cells is considered a full remission."

Well, all right then. I don't entirely understand, but I don't need to. I'm down to monthly checkups now through the summer, which will go to quarterly or so if all is well in the fall. With luck, there'll be no more news to report until, in a few years, I'm pronounced cured.

[/diaries/diary/life/hcl/] comment

Sat, May 29, 2004

What Happened, Part 2:

Friday, April 9 was my appointment with the hematologist and my flight to DC. Spike accompanied me and my luggage to my appointment with Dr. Weissmann, an enormously warm, down-to-earth, reassuring woman with a New York accent and an office filled with pictures of Lance Armstrong and her eight-year-old son. Within about half an hour, I was lying on my belly in an hospital gown (which Dr. Weissmann called a "johnny coat") for a bone marrow biopsy. Dr. Weissmann told me firmly that it wasn't going to hurt, but I was pretty damn scared. I'd read and heard descriptions of the procedure and it had generally been described as extremely painful.

See more ...

[/diaries/diary/life/hcl/] 590 comments

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