B is the word.

By , on June 8, 2012

C Word, Family

As I have written about endlessly, on Wednesday, May 30, I re-entered the transplant program at SCCA. This transition is rather odd because I have been to SCCA probably 100 times over the last 18 months, so I’m no stranger to the place, yet now they treat me like a new patient. But the transplant program is The Big Kahuna, the main reason that SCCA and Fred Hutch were created. People come from all over the world to be transplanted here. So my moving only from the 4th floor (general oncology) to the 6th floor (transplant) is somewhat unusual. But hey, I got a new ID card. (And the finance lady said insurance will cover the whole thing, again. Yay.)

My brother Mike also got a new ID card, because we went in together:

He’s the old guy on the left. I’m the old guy on the right. As it turned out his registration somehow got his middle name wrong (“Wilbur”?) which created some lively confusion for an hour or so. Always something. In fact they’re still calling him Wilbur this week.

We met with the allo-transplant team PA, who went over my medical history one more time. He asked: “when was the last time you were at work?”  I said: “uh, yesterday.” He said “wow, after all those things that have happened you’re still working? You must be some kind of tough guy.” Yep, that’s me, Mr. Tough Guy.

We both underwent lots of tests, more for me than for him, but he had to be shaved for the EKG and I didn’t. Perhaps the most amusing was the Pulmonary Function Test, performed by Pulmonary Pat, a tech who has apparently been doing this for far too many years. She is very upbeat, which is good when exhorting the patient “blow it all out, hard as you can, more more more!” in order to test lung capacity. I pushed 5.4 liters, which is Normal. But there is such a thing as too upbeat, you know?

Mike was there for three days, and was occupied with tests and meetings and things for about 5 hours total. “Seems like it could have been done in one day” he said. I assured him that waiting in the clinic is a key part of the therapeutic process. His last meeting was to obtain consents to do all the work. They threw me out of the room so they could talk to him privately to make sure he wasn’t being coerced into being a donor. (There’s a “bad blood” joke in there somewhere.)

The big procedure of the week for me was a bone marrow biopsy, actually an “aspiration”. In any case it involves putting a needle into the hip bone. I’ve had a few of these, and they aren’t pleasant, but I was more apprehensive this time because after the one I had in February I was in pain for a couple of months.  “That’s unusual” they said. I mentioned this, in pointed terms, to the NP doing the procedure this time, and it has been pretty much pain-free. So: it pays to complain.

The intent of the biopsy was to determine where the MDS is at now. All the results are not back yet, but the key finding was that the blast count was negligible, which is pretty much a direct indication of non-progression to leukemia. Pretty good news. Probably means the azacytidine did its job.

Next week things will ramp up. On Wednesday I’ll have a new Hickman catheter installed. This is a relatively permanent tube, aka central line, that goes right into the heart, thus giving easy access to the bloodstream for all the inputs and outputs that happen during transplant and followup. In the last few months I’ve sometimes wished I had one as my arms have gotten regularly poked. Now I will. It does have its downsides though, like making it harder to take a shower. And having to be careful that it doesn’t get caught on something and ripped out of your chest, which would be bad.

On Friday June 15 I’ll start five days of chemo in the runup to transplant day. The drugs will be fludarabine and treosulfan. There is a day of rest (more or less), then on the morning of transplant (June 21, if all goes to plan) I’ll get a single shot of Total Body Irradiation (I had 8 last time) to “stun the immune system” before getting the new stem cells later that day. Those cells will have been harvested from my brother the day before, following his several days of being injected with GCSF, aka Neupogen. This, we are told, doesn’t really increase production of stem cells; rather it encourages them to leave the bone marrow where they normally hang out and go into the bloodstream (aka peripheral blood) so they can be harvested via apheresis.

Simple as that. Then I just sit back and wait to get better. E-Z when you’re a tough guy.


1 Comment to “Tough guy, eh?”

  1. Slim says:

    My understated ubermensch, stoic and heroic trophy friend, I would say wake me when it’s over, but under the circumstances I won’t. Things are looking up up there since our last chat, and I will be very much awake and wishing you all success during this next procedure. Thanks to your dear brother for being your lifeline. Love and affection to your beautiful family. L’chaim.

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