Today, I speak on the phone with Kim, the Care Allies case manager who’s helping me make sense of my ever-more- complicated treatment options. I bring her up to date on what I learned at Hackensack a few days ago, and promise to call her back once I know the results of the Tumor Board’s deliberations.I’m getting more impressed with Kim all the time. She really seems to know her stuff (no great surprise, because she told me she used to work as a liaison between a medical insurer and stem-cell transplant centers). My initial reaction, when she showed up on the scene, was to suspect my insurance company was looking for a way to deny me benefits. I can see, now, that the situation is more multi-faceted. Sure, Kim’s going to represent the insurance company’s interests, but she’s also going to be a great help to me in navigating this increasingly complex maze of treatment decisions. I’d never replace her advice with that of a physician’s, of course, but she’s going to be of great assistance in helping me understand how the system works. I feel like I’ve just been promoted from the School of Cancer to the Graduate School of Cancer, with Kim as my newly-appointed academic advisor.
The procedure we’re discussing is called an allogeneic nonmyeloblative peripheral blood stem-cell transplant. When you’ve said that, you’ve said a mouthful. You can call it “allogeneic nonmyeloblative peripheral blood stem-cell” if you want, but all its friends call it “mini.”
“Mini-transplant” refers to the fact that it doesn’t rely on massive doses of chemotherapy to blow the patient’s immune system to smithereens (and the cancer with it), before building it back up again from the donor’s cells. What a mini-transplant does is more like a Trojan Horse than an A-bomb. Even so, there’s nothing “mini” about the actual experience: neither for me, nor for the lucky person who may get to be my stem-cell donor.
I’ve been in touch with my brothers, Jim and Dave, who both renewed their offer to get tested as possible donors (Jim tells me he may not actually have to be tested, because he thinks he’s already in the National Marrow Donor Program registry – having signed up a few years ago when a co-worker was sick). I’m very grateful to both Jim and Dave for offering to do this for me, should it turn out I need it.(I should emphasize, too, that a stem-cell transplant is but one of a number of treatment options I’m considering – we’re still at the talking stage.)
I’m especially grateful to them because I’m learning more about what it takes to be a stem-cell donor. Mostly gone – thankfully – are the days when the donation was accomplished through an arduous bone-marrow transplant. The newer, peripheral blood stem-cell transplant technology is a lot easier on the donors. It’s kind of like being a platelet donor or kidney-dialysis patient for a day or two: IV lines in either arm, and 4-6 hours of waiting while your blood is cycled through a machine that filters out the stem cells. Added to that are several, pre-donation days of testing, monitoring and receiving daily Neupogen shots, to build up the ol’ blood-cell count.
Although harvested stem cells can be frozen, Dr. Donato explained that the philosophy at Hackensack is to use them fresh, if at all possible. That means the procedure requires the donor to devote between one and two weeks to hanging around the transplant center. Those weeks can’t generally be scheduled at the donor’s convenience, but must integrate rather tightly with the recipient’s treatment schedule and the overall schedule of the center. (Hackensack, the sixth-largest transplant program in the country, does about 200 transplants a year, for treatments lasting a month or more – a formidable booking challenge.) It’s a great thing that Jim and Dave are both willing to clear their busy calendars to do this for me – yet, I’m even more in awe of the people who sign up to be on the national registry, making themselves ready to travel, on short notice, clear across the country if need be, baring their arms to people who will repeatedly stick them with needles – all this for the sake of a perfect stranger.In the Graduate School of Cancer, one of my first lessons is learning how wonderfully accommodating people can be – Kim, Jim, Dave, those anonymous donors, and others – giving of themselves to help a fellow human being. Thank you!
