Day +1, +2

Every day, we go into the clinic to get blood drawn and a basic checkup.

We've been warned, of course, about the coming flood. Diarrhea, nausea, vomiting, but right now they're sure isn't any action. Anywhere. My chief complaint is constipation. My blood counts are OK, white cells hanging in there for a bit longer, reds declining but not to the level of anemia, platelets in between.

Yesterday we went to a lovely park in the area, and walked. It did nothing for my gut, but it was a nice walk on a beautiful day, so that is nothing to sneeze at. Yes I know my selfie technique needs work.

I don't feel great, but mostly I'm just really grumpy right now.

Liz's sister Nell will be visiting for a few days starting tonight. It's great to have people come so that we don't go stir crazy in the little apartment. We're pretty boring company at present. 

Day Zero

Day Zero is the day the collected stem cells are returned, a new birthday for my bone marrow and all the blood cells that are made there. For me, that day was today. We started at 5:15 AM (these hours!), and finished at 3:00 PM or so. On the surface, it is a pretty restful day, in which I lie in bed (and Liz has a reasonably comfy recliner) and have fluids dripped or pumped into the central line. The only interruptions being frequent trips to the bathroom because of the high volume of fluids. The nurses treat the cells gently, thawing in a water bath and using gravity to feed them into the line, which runs slightly pink because a small percentage of the specimen consists of red blood cells that do not survive the freeze-thaw process. The stem cells survive in part because a preservative called dimethyl sulfoxide (DMSO) is used that buffers the cells from the rigors of freezing and thawing.

Besides the cells and massive doses of saline, I'm given tylenol, benadryl, and cortisone to prevent any short term allergy-type reactions (mostly, it seems, to the DMSO). We are also told that the DMSO, presumably because of its sulfur content, can produce bad smells and tastes that come right out of me, but are noticeable and unpleasant for those around me, too. Combined with the deodorant ban, this could be a difficult period, although minor in comparison to the nausea, vomiting, and diarrhea that I'm promised.

So far, none of this has come to pass. Mostly I'm just tired, as my red blood cell counts drop toward anemia, and at the same time the engraftment process will start to make use of the suddenly-depleted energy-delivery mechanism.

Consolidated

Today was the step called "consolidation," for reasons that are unclear to me. It could be called "the day they give you an IV full of a mustard gas derivative in order to kill your bone marrow" but that would probably not be good for business. In any case, I have been served.

There are four different anti-nausea drugs, two antibiotics, one antiviral, and one antifungal. Apparently the nurses offer barbering services to make the hair loss less messy.

It takes a while for the Melphalan to work its magic, so at present I feel OK. I have a whole new set of rules from now on, including:

1) no toothbrush: I have little sponges-on-sticks, and I am to "brush" with saline.
2) no razor: electric only (yes, I do [did] shave)
3) no nail clippers
4) no deodorant, or anything scented
5) no walking barefoot, even indoors (also no shoes in the house, which makes it complicated)

As far as I know, I am still permitted to eat with a fork. This may be an oversight resulting from the fact that so many people seem to lose their appetite completely. Hasn't happened yet, I can report.

Tomorrow is a day off with just a quick check of blood counts, and Monday is transplant day (5:00 AM).

That's a lot to swallow (not including pain and nausea meds "as needed").

The Ring

Prior to heading down for anesthesia, I was instructed to remove all "jewelry," which for me consisted of my orange Multiple Myeloma Research Foundation wristband, my fitbit, and my wedding ring. The first two items came off without a hitch, of course, but the third has been a part of my left hand for thirty years and was not interested in finding a new home. Using cold water and soap, I failed to remove it. The nurse gave it a try with Windex, but did no better. It was concluded that the ring could stay.

Down in Anesthesia, however, this decision was revisited. The surgeon explained that electric cauterization would be applied to the surgical incision, and the current would pass through my body, mostly to a large grounding pad on my right thigh. But he couldn't guarantee that some current would not heat up the ring enough to cause a burn. One of the more senior nurses was called over for a consult--she was good with rings. I soaked my fingers in ice water for a minute or so, and she worked her magic, which turns out to have consisted of pulling really hard.

Through all the time (so far) that I had been poked, prodded, made to lie for hours in uncomfortable positions, and generally abused, I had uttered not a squawk, till then. The ring came off, and all the other unfortunate patients waiting for anesthesia were treated to some seriously blood-curdling vocalizations, which undoubtedly helped them ease into their oblivia.

One of these is not like the others.

Line In

The "central line" is a catheter that is inserted into a vein in the chest. For everything that happens from now on, anything that goes into or out of a vein will go through the central line, kind of like a USB port. My veins will finally get a little rest.

Inserting the line is a lightweight surgical procedure, done with sedation and local anesthesia, but a surgery nonetheless. So we have to compete for time in the OR with people who need immediate attention, and everything is scheduled at the last possible moment. In our case, that's after 8:00 PM the night before surgery. I figured I was low priority, and maybe the procedure would happen late morning/early afternoon.

So yesterday was our day off, and we visited Liz's brother Bill and family in Minneapolis. After dinner, we checked the automated telephone service to find that my scheduled report time was 5:45. AM. So we hustled back to Rochester (it's a little over an hour), leapt into bed, and roused ourselves shortly thereafter (no coffee for me!). After which we waited for anesthesiology to process me and everyone else. Prep for me began with a chest shaving and a nice beard trim (no extra charge), and I don't remember the rest, but now I am the proud owner of a double-lumen Hickman catheter (no idea how that differs from any other kind of catheter). It was all over by 9:00 AM.

My neck is a little stiff, and I have to figure out how to live with these tubes hanging on my chest, but generally I am still feeling fine. Tomorrow is "consolidation" -- a big dose of melphalan to shut down the remaining stem cells.

Collected

After two 5-hour sessions hooked up to an apheresis machine, I have managed to get enough stem cells collected for three transplants. The goal was 9 million, and I managed 8.89M yesterday (we requested, but were not granted, a recount), and a paltry 2.4M today, but that was enough to creep over the finish line. Which was good, because the long steel needle that goes in one arm (that can't be moved for 5 hours) had visited both arms, and I didn't have any interest in seeing it anywhere near me for a third day.

We had to skip the nutrition class in order to eat lunch (priorities!) and then hustle Rosie to the airport, where it turned out Delta could not produce a plane to make her connection in Minneapolis, but was able to produce a bus that took no longer to cover the distance. Then back to Mayo to find that the hastily-prepared afternoon schedule had come slightly unraveled: reporting for blood work to check liver enzymes, we found that the lab had no active orders, which seemed to be the first example of internal miscommunication we encountered. Upon reporting upstairs for our meetings with transplant docs and nurses, though, it turned out that the blood had been collected this morning ahead of the stem cells and the lab results were already in, sparing me at least one blood draw.

So now we have a day off tomorrow, the central line will be installed Friday, big chemo on Saturday, rest on Sunday, and transplant (day 0) is Monday, July 11. The best is yet to come.

Pre-transplant

I am in Rochester, Minnesota, at the Mayo Clinic, beginning the stem cell transplant process. The name "stem cell transplant" is maybe a little misleading, since it doesn't involve a donor (rather, I am the donor and the recipient). Sometimes it's called "high dose chemotherapy with stem cell rescue," which is more accurate but cumbersome.

The basic process is: 1) stimulate growth and "mobilization" of my bone marrow stem cells with injections of a drug called neupogen (filgrastim); 2) harvest mobilized stem cells from my blood (much less painful than getting them out of the marrow); 3) use a massive dose of a chemotherapy agent (melphalan) to kill off all the stem cells remaining in my marrow; 4) return the stem cells collected in step 2 to my blood, and encourage them to colonize the marrow and start reproducing, with the help of more neupogen; 5) ride out a few weeks of recovery time until the newly reconstituted marrow is functional enough that I can return to a more or less normal life.

I am on my third day in step 1, which is scheduled to last until July 5th (coincidentally the 30th anniversary of my marriage to my true soul mate and idol, Liz). Step 1 is pretty easy unless there are side effects of the neupogen injections (so far, just a headache). From all accounts, the steps get increasingly obnoxious as we go along, up until the last part of step 5, where things should start getting much better.

Rosie has been with us so far, and she brought a cold with her, residue of having moved herself from Durham to Boston. So when we go to Mayo complex and hang out in the waiting areas, Rosie dons a face mask to protect all the clinic patients (who are truly sick) from her cough. It seems strange that the youngest and healthiest among us is the one wearing protective gear.

Soon enough, I'll be the one with the mask. Should be interesting.