June 22, 2008

This is a bit convoluted, but it's the only way to explain the last few weeks, and what's to come. Please bear with me.

Four weeks ago, my medical life was relatively simple. I only had to take three or four pills a day: one pantoprazole tablet, which helps keep my reflux in check (I developed the reflux problem during my third round of chemo), and three pills of desmopressin per day, which moderates my diabetes insipidus (i.e., it keeps me from running to the bathroom twice an hour).

A week after that, things changed a little. We'd confirmed the donor, and were going to figure out the next steps soon. However, I'd also been retaining water, and my whole body was a bit bloated. My doctor said it was probably due to the desmopression, so she recommended diuresis to solve the problem. That meant going off the desmopressin and basically peeing the excess water out.

A week after that, the water retention problem had mostly gone away, though I was experiencing some of the constant thirst I'd had back in December, and of course I was running to the bathroom a lot. Meanwhile, my doctor noticed my white blood count was elevated, and said we'd want to get that under control before we started any new chemo.

Oh yes, about that chemo. This fourth go-round would use two completely different drugs that would attack the leukemic cells differently, and hopefully put me into remission. There is, of course, no guarantee, but my feeling was that since a transplant while in remission has a much greater chance of long-term success, it was worth a shot. So I slowly started taking desmopressin again to regulate the peeing, and was prescribed Hydrea to help keep my white blood count in check (it was elevated) in preparation for the chemo. I was also prescribed my old friend, Allopurinol, which counteracts excess uric acid.

Two weeks ago, I noticed that while both my feet were still kind of swollen, the left one was more so. And it was a bit less comfortable. Still, it wasn't drastic. I just kept elevating my feet, and taking minimal desmopressin—just enough to keep my sleep from being interrupted at night.

Eventually my right foot returned almost to normal, while my left foot seemed to be expanding. Furthermore, what started as a minor tingling in my shins seemed to be becoming more problematic—standing up meant a sudden pain in near my knee that slowly moved toward my ankles, almost like it was flowing. It made it hard to walk at first, though massaging my foot and walking made it easier. Oh, and the area around my calf was tender.

During my last checkup, my doctor mentioned that the Ottawa Hospital is one of the places that performs transplants on people who aren't in remission. We thought that was wonderfully convenient, as Ottawa is just two hours away and of course we'd still be under the Canadian healthcare system. However, after she looked at my foot and I explained my pains, she ordered an ultrasound for the next day, just to make sure it wasn't deep-vein thrombosis (DVT), essentially a clot that was blocking circulation. Just as a precaution, I was injected with a blood thinner. (For some reason, they couldn't use my chest catheter. I took the shot in the stomach, which hurts a lot less than you'd think.) Oh, and since my white blood count went up by 50% (!!!) my Hydrea dose was upped by 150%.

The next day was the ultrasound. Guess what: no clot! After a bit more examination, my perplexed doctor figured it might be cellulitis (no relation to cellulite, although my foot—then extremely and painfully fat—might have suggested otherwise). So for that I was prescribed Duracif, an antibiotic.

So here's my new daily drug routine:

- 1/2 an hour before breakfast: 1 pantaprazole tablet, five Hydrea capsules, and 1 desmopressin tablet (sometimes half a tablet, depending)
- at breakfast: 1 allopurinol tablet, 2 Duracif capsules
- at dinner, 2 Duracif capsules
- before bed, 1 desmopressin tablet

What fun! At least my foot is gradually deflating, and the pain has diminished considerably.

Anyway, the day after the ultrasound we heard from the transplant specialist in Ottawa. Seems he has some concerns about my forthcoming chemo treatment; he feels that those specific drugs, should they not put me in remission, are likely to cause complications on a transplant.

This poses something of a dilemma. The best chance of a successful transplant (one that cures the leukemia and the monosomy 7, but also one that I survive) is one that is performed while I'm in remission. But of course, the very reason I need the transplant—the monosomy 7—makes it hard for me to get in remission. The chemotherapy treatment we've been considering has a slim shot at succeeding, but as I said before, I'd been thinking that I'd rather take the chance and hopefully get a shot at getting in remission. However, now, as I understand it, undergoing this chemo and not getting in remission will actually put be more at risk compared to getting a remissionless transplant—however, getting a transplant without being in remission is already considerably riskier.

Tomorrow we meet with the doctor(s) in Ottawa to get more details and discuss options and probabilities. And then I distill all this knowledge and make the most important decision I've ever had to make it my life.

I hope this explains why, when people congratulate me about finding a donor, I say that things are far from over.


posted by Emru Townsend at


Blogger Will Shetterly said...

Sharing this has got to feel strange, so I wanted to thank you for doing it. I hope, when you have all the information about the next step, the right decision will become clear.

June 24, 2008 1:25 AM  

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