Thank Your White Blood Cells

Thank you everyone who's written and emailed (and commented here) - it helps, really. I'm sorry that we can't visit with you all in person. I'd love to throw a party and have everyone over, but we have to to seriously limit visitors. Dave has almost no functioning immune system. He is taking quite a few antibiotics and anti-virals, but they're no substitute for a healthy batch of white blood cells (remember to thank your white blood cells tonight.) We have invested in tons of hand sanitizers (found a great natural one: CleanWell.)

Then there's the low level of red blood cells, which makes him tire easily, and the low platelets which makes him bleed/bruise easily, and you can see why I get nervous when he leaves the house each day. According to the Neutropenic Diet (and the nutritionist at Kaiser concurs) eating anywhere outside of your own home is a high risk activity. But Dave feels like, "Why live in San Francisco, if you can't eat out?"

I'm slowly learning more about leukemia and the many different types and treatments, etc. It's a steep learning curve for me. Partly, I guess because I've been away from nursing for so long, partly because I haven't had much time to "study." There's always too much to do around here. I'm just now getting ready to get back into painting. Today I was planning to prepare another panel for my next painting. We'll see if it gets done . . .

Dave is doing OK. Not as good as I'd hoped, not as bad as I'd feared. In spite of a decent appetite, he's still losing weight . . . not that he can't spare a few pounds, but it's an ominous sign that worries me. Very soon we will have to replace his entire wardrobe, or at least get all his slacks taken in. (Anybody know of a good place to do that?) He has developed strange lesions on his face - sort of, but not quite, like nodular acne. Some look like burns. He's getting unusual aches and pains that might be lymph node enlargements. He thinks the pains are muscle pulls, from riding MUNI - not a very comforting thought, to me. He's back at work, but doing short days - he doesn't have the stamina to go more than 5 to 7 hours. The night sweats continue, in milder form - his temperature is slowly climbing, but he's not febrile yet.

We have almost finished all the household modifications that we started right after the diagnosis. The bedroom is upstairs near the bathroom; the studio is downstairs; there's an extra guest-sleeping-area in the basement. The main thing left is assembling the weight machine that Susan got when she was down here last time - we're planning to do that this weekend. Then Dave can work on rebuilding muscle mass, when he has the energy for it.

Back to Work

Dave has slowly gained strength over the last two days, and he's going to try a half day of work today. Things are looking up.

Crashed

Dave's sister left yesterday morning. No chemo this weekend, so it's "rest" days. Good thing, because we were both so exhausted that we went to bed at 5pm and slept for 14 hours.

Roger and Leigh stopped by earlier in the day to help move furniture - we're still emptying out the old painting studio and getting it ready to paint. Then we'll make it the new bedroom. Pam and John came by later to say hi and drop off some skin salve. I'm afraid we were zombie-like hosts. Apologies in advance to any visitors we fall asleep on.

Dave was still pretty whipped this morning, and getting worried about having the energy to return to work on Tuesday. He's been hanging out in the "dead elephant" today (see above.) That's the chair my brother brought over here a couple of months ago, for reasons too complicated to go into right now. Dave didn't like the chair, and he dubbed it the "dead elephant." As soon as possible, he banished it from the living room, so I used it in my studio. But with all the furniture rearranging around here, the elephant landed back in the living room and Dave's been using it more and more. Today he finally announced that it was a great chair and he was glad to have it.

Last Day of Chemo (for now)

Dave was pretty wiped out this morning, so he slept in and rested before heading over to the hospital for his third chemo infusion. Afterwards, he was feeling a little better, so we went to the Zephyr Caffe for tea and then home for a little soup. He's still pretty tired, but he's taking this chemo regimen way better than I'd expected.

His multi-medication schedule (at home) is so complicated, I had to put it into a spreadsheet just to make sense of it. Also hassle - setting the alarm for midnight & 6am to take medications. Still, it's better than being in the hospital.

Image above: Dave at the pharmacy, picking up more meds to go.

Second Day on the Level

Dave was still wired this morning and after breakfast he went out to Costco with Susan and me, to look for a giant bottle of alcohol hand sanitizer (which we never found.)

Then it was on over to his second day of IV chemo this afternoon. This time Susan & I stayed out in the waiting room while Dave went in by himself. He was able to chat and compare notes with the other guys getting chemo, as they sat in their recliners. He almost seemed to enjoy it and when he left he was anxious to get over to the garage to shoot some photos from the roof.

He was slowing down a bit by the time we got home and about mid-way through dinner he finally bonked. He barely made it to bed before dropping off to sleep.

He's been having increasing episodes of hiccups, which are causing him some distress, but no nausea so far.

First Day of IV Chemo

Today was a long session at the Oncology Clinic Infusion Center. We were there for almost 3 hours, but mostly we were meeting people, listening to instructions and waiting . . . lots of waiting. The infusion itself was actually anticlimactic. Afterwards, Dave felt so good, he wanted to go to Mel's for a late lunch. He's getting Mitoxantrone and Fludarabine, plus Decadron. The Decadron had him so buzzed, it was like he'd had three cups of coffee, and he's been in high spirits for the rest of the day.

Chronic Lymphocytic Leukemia

We just got back from the hospital. The official diagnosis is chronic lymphocytic leukemia. Dave's going to the hospital (as an outpatient) for the next three days, for IV chemo. Then he has 4 weeks of "rest," then another 3 days of chemo, then 4 weeks off, and so on, for 6 months.

Then, assuming his tests show a satisfactory improvement, he will have 18 to 24 months of "normal" life. Satisfactory test results mean that the percentage of cancer cells in his bone marrow drops from (the current level of 80) to 20 or less. The cancer will slowly return, and when the levels get too high, he will return for another round of chemo.

The prognosis for this kind of cancer is about 10 to 15 years. Better than the 1 to 3 months they first offered us, but not not good enough for Dave. He's a little pissed right now.

Echo today

Dave had more tests today, including an Echocardiogram (which is what he's doing in the photo above.) Nothing painful or too scary, and we got out of the hospital earlier than we'd expected.

Tomorrow is the big day - the meeting with the Oncology team to hear the complete diagnosis and treatment plan. Dave's sister Susan and I will be going with him, to make sure all his questions get answered and to make sure he gets the best care.