Chilling

Chilling is not a word I'd ordinarily use, except maybe ironically, to describe what I've been doing, since it seems to belong to another demographic entirely. I'm making an exception here because it is also literally true. It has been cool and damp here in SW Colorado, where we have been holed up for a few weeks.

I realize (after several concerned inquiries) that the extended silence following a post about having trouble breathing was poor form, and I apologize for leaving people hanging. I am pleased to report that a steady diet of thin air and good food has been helpful, and my stamina has increased markedly since we have been here. Polly and Barrett have been great hosts and wonderful company as always, and Sancho the dog became slightly unhinged by my willingness to play fetch with him for hours on end. Two days ago Barrett and I climbed West Baldy, which at 9780 feet is by no means monumental by local standards, but has always been a good workout for me.

Here are a few pictures. The first one is relevant to chilling, as the snow-covered ridge in the picture was about 1000 feet below us when I took the picture. It must have resulted from a tiny temperature inversion, although it was plenty cold above, too.

Snow at -1000 ft.

Barrett checking on the neighbors.

West baldy.

Heading back home Friday, with a quick turnaround to Mayo for Round two.

Bike Rides

So we're back in Louisville for a few days. One of the consequences of being released from the daily clinic visits is that I no longer have a daily readout of the various cell counts. The white cells and platelets were doing just fine last we heard, but the red cells were still lagging.

A couple of days ago, I grabbed my road bike and set out to see how that felt. I looped around the neighborhood for a mile or two, then headed for Seneca Park, which is reached by a very short (0.1) mile climb with a fairly steep (9%) grade. When I got to the top, I nearly collapsed, and had to lean carefully on the bike to keep from falling over while catching my breath. After I'd recovered, I reconsidered my ambition level, made another short loop in the park, and returned home, with one more hill climb of similar dimension, and similar result. I had honestly never had to stop to catch my breath after climbing a hill in Kentucky, and here I was totally destroyed by two hills that had barely registered in my consciousness in eight years of riding. So that's an indication that the erythrocytes still need some time to recover.

Today I scaled back my ambition, using the mountain bike to remind myself that I was not intending to go fast, and managed a few loops without having to stop for oxygen supplementation. Most of today's progress is probably the result of changing my behavior, rather than actual recovery, but at least there's some semblance of balance between my expectations and reality (for now).

Let's Play Two

On balance, given what's currently known, we've decided to go for the second transplant. It's certainly not guaranteed that I will tolerate the procedure as well the second time, nor is it guaranteed to "work," but there is at least a lot of evidence that tandem transplants have worked for many people in my situation, and when the second transplant is finished, all options for using some of the exciting new drugs on the market will still be open. A couple of interesting clinical trials that are currently underway will probably report results this Fall, which may lead to some new drug approvals as well.

So we're looking at returning to Rochester around the second week of September (~ day +60), and probably finishing up around October 1 (it should take a little less time, because the stem cells are already collected).

Might be a few quiet weeks on the blog, but I plan to report on transplant #2 as it happens, if anyone is still following by then.

But wait, there's more . . .

A long day, starting with the usual blood draw, followed by a session of inhaling pentamidine (an antibiotic that should give me 30 days of protection against pneumocystis pneumonia), exit interviews with transplant nurse/coordinator and hematologist, and finally the removal of the Hickman catheter (aka the central line).

It turns out I'm not too good at this inhaling business. They positioned me in front of a hood (above which was a TV with some Discovery Channel show about surviving in Alaska) and handed me a plastic mouthpiece with small clouds of vapor pouring out, I was to stick this in my mouth and "breath normally." As soon as someone tells me to breathe normally, I have no idea how to breathe. Nose? Mouth? OK definitely not mouth. Nose is ok. Don't hyperventilate. Deep breaths. No, regular breaths. By this time and for the next 15 minutes I am totally lightheaded and never did feel right for the rest of the day. Meanwhile, the Alaskans had to kill their old milk cow in order to get enough meat to survive the winter.

The exit interviews started smoothly enough, with the nurse/coordinator giving us instructions that apply to most of the transplant patients. After a while, I remembered that the schedule was going to be different in the case of tandem transplants, although we hadn't decided yet whether to go that route. So that confused things.

Tandem transplants (in other words, two planned transplants within a short period of time) are kind of a weird idea.

Consider the basic transplant: first, you harvest a bunch of stem cells and freeze them. Next, you kill off the remaining stem cells in the marrow with melphalan. Next, you put the stem cells back in, and wait for them to grow. They grow, and you go home.

But a tandem transplant means that you give those cells a few weeks to multiply happily, and them you kill them. And do it over again exactly the way, except using a bag of stem cells that's been frozen for a couple of months.

So how could that be better? It turns out that the melphalan doesn't kill all the stem cells. Labeling studies seem to show that recurrent disease doesn't come from the transplanted cells, but from cells that survived the chemo. So the second transplant cleans up after the first, and the first batch of stem cells is sacrificed for the purpose. That's the theory. Personally, I'm trying not to feel too much loyalty to that first bag of cells.

The next piece of complexity is that the clinical trials that established that tandem transplants work better than single ones for people with disease like mine are getting a little old, many of the drugs have changed, and a lot of new drugs have come on the scene lately that seem very promising. So it's difficult to decide what to do next.

Working on it. Stay tuned.

If you sit around long enough, something will happen

Today was a slow day for me. Tomorrow we have exit interviews, removal of the central line, and an inhaled antibiotic (pentamidine, to prevent pneumocystis infection). So that will be plenty, but today was a little bigger for Liz than for me.

Liz wisely had taken advantage of all the down time to get a skin survey from the dermatology clinic, and sure enough they found a basal cell carcinoma (that's the most common and least dangerous kind of skin cancer) just around the corner from her right eye.

Even though a BCC won't kill you it can be very inconvenient to remove, and this one put up some fight. She's got a lot of stitches and the swelling to go with it.  Now we can really scare the children when we walk down the street together, me with my shiny skull and black face mask, and Liz with her eye not-quite-a-patch. Before they started surgery, a professional photographer came in with a big SLR and reflectors to take what are no doubt exquisitely detailed images of Liz's tumor. There was a minor epiphany when we realized that this was exactly the source of those horrible photos that grace every dermatology textbook, though in fairness Liz's BCC was not nearly horrible enough to make it big. She did sign a release, though.

All over but the shouting

Today's numbers are well over the threshold required for release: 1 billion neutrophils/liter, 109 billion platelets/liter. So the next step is to schedule an exit interview with the hematologist and get our walking papers. There are a lot of details to work out, especially whether to do second transplant, but also more mundane things like scheduling blood draws and interim treatments.

I'm hoping we get to meet with the hematologist tomorrow, but it might be Friday or Monday. It will be nice to move on, although this will not be the end, one way or the other.

Over the line

Today the platelets hit 77 billion/liter, and the neutrophils hit 700 million/liter, both good enough to get me released after a few more formalities. Neither of these values is within the range considered "normal" yet, and the hemoglobin still has to come up from 9.9 grams/deciliter to something more like 13-14 before I will really have recovered the fundamentals; moreover, my understanding is that my new immune system will take a while longer to really be fully functional.

Also, the successful completion (or really near-completion) of the transplant is in no sense a cure. The myeloma is still there, greatly weakened (we hope), but impossible to eradicate with any tools we now have. In the next couple of days, we'll have some data on how deep the response to treatment has been (basically how many, if any, of the tumor cells are detectable). That should help us work through the next steps.