Monthly Archives: January 2013

Transplant, probably. Sushi, probably not.

photo under Creative Commons license from Lotusutol: www.flickr.com/photos/lotusutol/13075942/

photo under Creative Commons license from Lotusutol: http://www.flickr.com/photos/lotusutol/13075942/

Well, yesterday I talked to an MDS specialist at Hopkins (whom I do not have the energy to give a snarky nickname), and got moderately encouraging news. Let me, right up front here, say that, as is the case with all my major oncological appointments, I did feel as if my brain was working about as fast as I could run through hip-deep molasses. Although Dr. No-Snarky-Nickname is an excellent communicator, I probably got some things wrong as the mistaken preconceptions in my head collide with the words that were actually being spoken aloud.

On the plus side, it sounds as if we are likely to move ahead with the transplant, probably in April, although everything depends on a battery of tests in March. It appears that this transplant will be way less likely than my original autologous transplant to lead to secondary cancer in the future (or more precisely, as this is treatment for a secondary cancer, a tertiary one). So, yay for that!

On the downside, though my platelets were up some more, my white counts were down and (before he even saw them), Dr. NSN didn’t offer the effusive, definitive statement I wanted that my MDS can be classified as “responsive” to the Vidaza, which is a glorified status that lets you get your name in the paper, win concert tickets and other valuable prizes, and breeze past airport security without even taking off your shoes. Seriously, though, it is even better than those things because, apparently, MDS that responds to Vidaza also tends to respond better to other treatments (although this is all possibilities, and My Mileage Will Vary). Dr. NSN allowed as how If I had blood counts that were normal, at least for part of the month, would count as a sign of responsiveness, but the real gold standard is the bone marrow biopsy, which I’ll get in late March.

Dandy blood counts before that might be unlikely; my white count was down to a pitiful .7 yesterday (and again today at Dr. Virginia’s when I went for Vidaza). This strongly suggests that the big spike I had in early January (to levels I hadn’t seen since 2011) was only made possible by a confluence of two–count ’em, two–factors working together: 1) Vidaza’s primary effect of making my MDS less, and 2) the extra week I got between Vidaza cycles at Christmas, which gave me a break from Vidaza’s side effect of lowering white counts.

Disappointing white counts, but platelets keep going up.

Since Dr. Virginia says he wants to continue with the Vidaza full steam ahead–stomping on the malignant cells in my bone marrow is the most important thing–I fear I might not get up into the normal range again this month. There go my visions of going out for sushi, eating freely of salad, and attending crowded parties a bunch for the next couple months.

How’d ya like those data?

I love data–it’s fun to hunt down patterns in them. (Yes, “data” is a plural noun–this notice brought to you by the Rear Guard Linguistic Change Resistance League). So, needless to say, I’m obsessed with my blood count spreadsheet:

Green vertical lines are the start of a Vidaza treatment–for me, that’s seven weekdays in a row, every 28 days.

The Vidaza affects my counts in two ways. One, it demethylates my DNA so my body better fights the malignant cells that were making my blood counts fall. (I’m still thinking of this as mentholating my DNA and making it minty fresh, but I’m going to look up the chemistry any day now). The biggest disease symptom I had was lowered platelets–you can see in the lower graph that they were falling steadily before my first Vidaza treatment (the first green line), and overall they are trending back up.

The second way Vidaza affects me is by suppressing my blood counts. This gives me a “nadir,” or low point, after each treatment–in the case of the platelets, you can see that the low point is maybe 2 or 3 weeks into the four-week cycle.

But in the case of white blood cells of various kinds, the top chart, the nadir seems to be about four weeks into my four-week cycle. Every month, the white counts finally start to climb up a bit during the first week of the Vidaza treatment, then head down again as the Vidaza shots continue and the side effect gears up again.

Over Christmas, I got an extra week between cycles 3 and 4, so I could go home and visit my family for the holiday. Right afterwards, my white counts shot up–all the way into the normal range, higher than they’d been since fall of 2011. So, the good news is, that means that the Vidaza is pretty clearly working! That’s the main thing.

As I started to head towards my regularly scheduled nadir, my white counts took a plunge again. To put things into perspective, my white count low point last week was about the same as my high point the month before, so that’s not bad. Here’s the question, though: will I get a big white count peak again next week, due to the Vidaza having kicked in? Or, was the big peak made possible partly or mostly because I’d got a week off?

My counts next week will tell which is stronger, countswise: the primary Vidaza effect or the side effect. Either way, I hope I get the transplant (I’ll find out more when I go see the expert on Monday). But it would be nice to have high counts and the ability to eat salad and so forth for a little bit before I go for the heavy duty stuff.

Honor MLK. Support a $15 minimum wage!

“Don’t call me a saint,” Dorothy Day said, “I don’t want to be dismissed that easily.” Martin Luther King Jr. certainly deserves to be as famous as he is, but it seems all too often that, as he becomes something like a national saint, his name and two or three phrases from the “I Have a Dream” speech get bandied about way, way out of context.

This is from 1963. Haven’t done in-depth research, but I’m pretty sure the Poor People’s Campaign didn’t demand *less* government intervention…

People who know way more than I do, such as Vincent Harding, have written about this, but I’d just like to point out that one official demand of the March on Washington for Jobs and Freedom was a minimum wage that is the equivalent of $15 an hour in today’s dollars (see snippet of press release at left).

To see the rest of the March’s demands, surf on over to the library of Congress and see p. 29 and 30 of this document collection.

Sorry to go off topic! I’ll try to keep it to a minimum.

Bit of a Dip

Well, I’d hoped that the fact that the Vidaza is kicking in (having its intended effect of decreasing malignant cells in my bone marrow) would overcome the fact that my blood counts normally dip in the middle of the month (because the side effect of Vidaza is to decrease blood counts). No dice–the dip, it is there:

You can see the recent dip at right, and its three predecessor dips stretched out to the left.

Phil (the purple line) and I were still on good enough terms that I could eat some lettuce yesterday, but I should probably err on the side of caution and have a salad-free weekend.

My 28-day Vidaza nadir–it’s the new Mr. Monthly.

Whoo Hoo!

Hey, blood count fans–great news! When I got tested today at Dr. Virginia’s, I found out my white blood count has tripled in the last week, and my neutrophil level gone up sevenfold. (Warm welcome back, Phil!)

Lookit those white counts climb–go, prayer team, go! Normal WBC is 3.5-10, and normal GRAN (neutrophils) are 1.2-8.

I’m no medical expert, but since Dr. Virginia told me that “hemotologic improvement” would be the sign the Vidaza was working, I’m going to go ahead and assume that means it is working to get me ready for transplant (by reducing the malignant cells in my bone marrow, preparatory to the donor bone marrow wiping out the stragglers with an immune response). Dr. Virginia said the Vidaza often took 3 to 6 months to kick in, and I am in the middle of cycle 4, so that’s right on time.

As an extra benefit, the white counts put my immune system back into the normal range, at least for now. Things tend to dip a little during the middle of my Vidaza cycle, but I’m going to take the opportunity to eat salad for the next few days, and to forego wearing a face mask during non-crowded times on the Metro.I’d like to thank God, all you folks praying for me, medical science, and all the great nurses at Dr. Virginia’s. Also, I’d like to thank my DNA–you are taking the Vidaza treatment to demethylate your little double-helixed heart out, and I really appreciate it.

I heard from the nurse transplant coordinator at Hopkins that they won’t do a bone marrow biopsy on me this month and that they’re likely to do two more months of Vidaza before transplant–I’ll find out more treatment timeline info when I have an appointment there at the end of the month.

Me *not* wearing a mask on my way home from Dr. Virginia’s today. Don’t worry, I’m still avoiding coughers.

Dr. Concerned: the exact opposite of Dr. House

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My doctor at Johns Hopkins for the last seven years (including my first stem cell transplant and follow-up) has been a great person I’ll call Dr. Concerned. I’m happy to report that she is just as smart as Dr. House, but with an exactly opposite personality and, more importantly, the exact opposite way of working.

Dr. Concerned is the exact opposite of this. Image from Better Than News on Flickr.

Dr. Concerned is the exact, total opposite of this. Image from Better Than News on Flickr.

Watching House is a double pleasure: enjoying the banter and, still more, being grateful that one’s friends are not screwed-up people who devote all their free time to head games. However, I have the much greater pleasure of assuring people that generally doctors are well-meaning people and, more importantly, that they are willing to work together.

At Hopkins, a bunch of doctors all meet together to go over new patients and weigh in on treatment. This makes me feel very good, because brilliant troubled iconoclasts might make good tv, but as a patient I’d much, much rather have brilliant people working together as a team to deal with my unusual medical problem. I’m also glad, of course, that I don’t have to start bleeding out of a new part of my body three times consecutively, to create drama before each commercial, before being correctly diagnosed.

I think most doctors (other than a few egomaniacs) are willing to work together on the hard cases, although I wouldn’t be surprised if the U.S.’s crappy, often out-of-date medical records system sometimes impedes them from doing so as effectively as possible. (Fellow patients out there–*always* save your films and pathology reports!)

Dr. Concerned is clearly an even more empathetic person than average (though a little of that may just be the shape of her face, because it seemed to me she looked a little concerned even when giving me good news during routine yearly appointments). I’ll probably start seeing a different doctor at Hopkins who specializes in the kind of cancer I have now, but I’m sure going to miss her. Thanks for seven years of great care, Dr. Concerned!

cherish each moment, even the ones that suck.

thoughts about surviving cancer. also, other things.