Halloween at the Clinic

Dave & I were standing at the corner of 9th & Judah this morning, waiting for a bus to the hospital, when I looked over and saw . . . I wasn't sure what it was at first . . . a view through an apartment window, of a TV screen so enormous a small section of it filled the window. Expanded entertainment with the morning commute.

Anyway, it was the usual whole day in the infusion clinic. Dave got blood and Rituxan, tolerated them both with no problems, but the Benadryl (pre-med) has him pretty zonked out.

Plans for the immediate future: Reduce the Prednisone even more. Check the Hematocrit again in a week, get more blood then if necessary. Try again in two weeks to get the Fludarabine & Mitoxantrone.

No one at the hospital has anything useful to say about Dave's skin problems. We're figuring it out on our own.

Be careful out there tonight!

New Plan

Dave's blood work from yesterday showed that his anemia is coming back - of course we knew that (the shortness of breath, the dizziness, the pounding heart.) And the blood test showed a slight increase in his Neutrophils and Lymphocytes. But the White Blood Cell count is still on the low side - 1.9 K/uL.

So the doc has decided to postpone the Fludarabine and Mitoxantrone again. Dave is scheduled to get another infusion of Rituxan (which so far he's tolerated very well) tomorrow. He's also going to get another blood transfusion, but we're not sure if it will be tomorrow or later in the week.

Then there's the skin problem - Dave's been dealing with an annoying acne-like rash for weeks, and after much trial and error, we think it may be a fungal infection. Luckily, you can find over-the-counter remedies for that, but maybe someone at the infusion clinic tomorrow will have a better idea.

Postponed Again

Dave's doctor told him today that she wants to postpone the sixth (and final) infusion of Fludarabine once again. She said his white count was still too low.

I was happy to hear the news, since a.) the Fludarabine does very nasty things to Dave while it's killing those cancer cells, and b.) he's still not completely recovered from the last dose (which was mid-September.) Plus, in looking at his bloodwork this morning, I thought I could see a glimmer of hope that maybe his bone marrow was starting to recover.

But Dave saw it differently and took the news pretty hard. He's been dreading this last dose, because of how sick it made him the last time, and he just wants it to be over with. Every week that it gets postponed, the apprehension increases.

So we're going out for Mexican food tonight. It's been months since Dave could tolerate his favorite foods (the chemo strips his stomach lining so things like tomatoes and hot peppers hurt too much to eat, plus he can't taste much.) Now it's been long enough, since that last chemo, that he figures he can try some tamales. So we're going to L'Avenida.

(Image is a plate of tamales and nopales tunas, made here at home a while back.)

Seach engine for CLL

I just found this cool new variation on Google, called Cllgle, which was configured by Andy Nathan in the UK. It's a way to search prominent CLL & medical sites for information without getting billions of nonsense responses from the rest of the internet.

Here's the LINK. I also put it in the sidebar for future use.

Waiting

Dave has been hoping this would be his last regularly scheduled week of chemo, but it's been postponed, due to low neutrophil counts. The doc also said that the Fludarabine has not been working as well as she'd hoped, but that it was doing 70% of the job. The new plan is to do one last round with Fludarabine next week, then continue with Rituxan for an undetermined number of months. He might need another transfusion before the Fludarabine - we'll find next Monday when he gets his blood drawn again.

We asked about the upcoming trip to Los Angeles, which Dave has really been looking forward to. . . it's only three weeks away. She said he could come in for another transfusion right before we left, so that he he'll have enough energy to leave the hotel room.

But first he has to get past the next chemo session and its aftermath, which could be rough. We'll just have to wait and see how it goes. He's been having some gastric problems, so she ordered a new drug - Pepcid. And she reduced his Prednisone again.

Holding Steady

That last transfusion seems to holding steady, as least as far as the symptoms are concerned. Dave went back to work yesterday, and today he's getting another blood draw on his way home, just to make sure things are copacetic.

(Image above - as soon as Dave felt well enough to walk around, he headed out to the Inner Sunset to get his film developed, and shoot more pictures.)

Three Days of Rest

Well, we're back from the hospital - Dave got two more units of blood. I asked his nurse if she thought this might get his hematocrit over 20, and she said, "maybe." Now he has three days to rest up, with an anticipated return to work on Tuesday. A friend loaned him a sack full of movie DVDs and we were home less than 10 minutes when he had "The Magnificent Seven" playing. So Dave's set for the weekend. I'll be at the Bluegrass Festival - actually I'm thinking of riding my bike over there now. . .

Love Those Red Blood Cells

Jeeze, it's been a tough week, but things are looking a little brighter this evening.

Dave was still pretty weak this morning. I did a few "tests" with him: checking his pulse before & after certain activities to see if his cardiac recovery time was adequate - and it was, although his resting rate is still significantly elevated, compared to a few months ago. And he tried walking four blocks to see if he could tolerate it - which he could, but just barely. He was out of bed all day, which is an improvement, but he's still very pale and his lips are blue.

We contacted his doctor and they had him come in for another blood draw. And shortly after the blood draw, we got a call from the clinic telling him to come in tomorrow morning for more blood.

The best news is the lab results from today:
WBC 0.5 (about the same)
RBC 1.84
Hgb 6.2
Hct 17.8 (better, but not good enough)
Platelets 110 (low, but much better - I had told him that "Anna's Rule" is that he could not ride public transportation with a platelet count under 100)
Neutrophils 23% (wow! way better!)
Lymphocytes 76% (lower than before)

Anyway, we have a ride to the clinic set up for tomorrow morning, so by Saturday he should be feeling a lot better.

Remember Burma

Detained pro-democracy leader, Aung San Suu Kyi, appeared at her front gate yesterday as several hundred courageous monks marched through barricades blocking access to her home in Rangoon.

LINKS:

Chevron and Burma

Photos from a "brave Burmese living in Rangoon," who cannot be identified right now.


What's the Story with Burma?


BBC Profile of Burma


New York Times on Burma


Huffington Post on Burma


Independent Media looks at Burma


US Campaign for Burma


Human Rights Watch on Burma


Democracy Now on Burma


Amnesty International on Burma

Treating the Symptoms

Yesterday (Tuesday) was exhausting (for both of us.) A nurse at the infusion clinic called at 8:30am and told Dave to come down right away for some blood. We were both up, dressed, done with breakfast, and waiting for the call. But due to transportation problems, we didn't get there until 10:30am. Which means, the blood didn't actually get started until nearly noon. Which means, it didn't finish until almost 3pm. Which means, we got home about 4pm (later for me, since I had some errands to finish.)

Dave was so weak, he was barely upright. When the infusion nurse saw him, she said, "Hmm, you do look a bit pasty - do you need to lay down?" Luckily, he was able to spend most of the day in a soft chair with his head back and his feet elevated, dozing off & on. After he got settled at the infusion clinic, I took off to look for soft bland foods that would not hurt his mouth or stomach but would provide him with some electrolytes and protein. Plus it had to be low fat, and vegan. And I had to find some pain meds and other odds & ends, from several different sources. It was a challenge, but I think we're stocked up pretty well, now.

Dave is finally reaching the threshold of his needle-stick tolerance. He's been stuck 15 to 18 times per month for the last 6 months and at least 3 of those times each month he gets IV chemo through that vein. He's had more hematomas on his arms than we can count, and the pain is getting worse. He's starting to have nightmares about needlesticks.

He's spending today in bed. He's still weak, lethargic, and got a killer headache. He actually looks feverish, but he doesn't have a fever. He might have a sinus infection. He might be having a mild blood reaction. It's hard to tell what's going on - with a trashed immune system, the usual signs don't apply. So for now, we're just treating the symptoms.

Well, that answers that question

We finally got the lab results back from this morning's blood draw, and it's:
RBC 1.47
Hgb 5.0
Hct 14.5
Platelets 58
WBC 0.5
Neut 7%
Lymph 92%

. . . so I assume we'll be heading to the hospital tomorrow for some more transfusions.

AIHA and Chemo

... not a happy combo. Dave's been up, down, and all around since my last post. At the moment, he's feeling pretty miserable. His mouth is full of ulcers (probably from the chemo,) he's having stomach/abdominal distress (of unknown origin,) he's having tremors and cramps (electrolyte imbalance, due to multiple issues) and he's weak & breathless. I'm guessing his Hematocrit is lower than it's ever been (the lowest so far was 18.)

I took him to the hospital for a blood draw this morning, and we left a message for the doc this afternoon, but we haven't heard anything yet. We're both assuming he'll get another transfusion tomorrow, but we're still waiting for the word . . .