I don’t usually quote Van Halen songs in this blog. But then again I don’t usually run across a nurse who says deciding whether to have a stem cell transplant is like deciding whether to jump out of a burning building.
That’s what Theresa Brown, R.N., does today in a blog on The New York Times website. The title of her post is sobering: “When Cancer Treatment Might Kill You.” She tells the story of a young multiple myeloma patient who had an allogenic stem cell transplant and is now on a ventilator, having survived four surgeries in the last eight days following a bowel perforation. Doctors have removed his colon. This is all the result of Graft vs. Host Disease, aka GvHD.
What’s interesting here is the feeling that the nurses have about transplants: Mixed at best.
“It’s tough, and among ourselves there’s a strong feeling of “I would never get an allo,” because we know how bad it can be,” writes Brown.
Nonetheless, they don't think it's entirely hopeless.
“On my floor we have a book, an old-fashioned photo album filled with pictures of the transplant patients who are still alive. To many of the nurses on this floor, the specific details of these patients’ lives are irrelevant; all we care about is that they’re alive. They talk, eat, see their grandchildren, nurture their kids, love their spouses and enjoy their friends. They fill the place in the world that is uniquely theirs.
“For me, the book of transplant patients has a magical feeling. I sample its treasures by looking at a few photographs and then I put it away. I don’t need to read the whole book; just knowing it exists is enough. 'All these people survived,' I think. 'All these people are alive because of the work we do.' ”
I find that medical personnel speaking candidly can give you the best idea of what something is really like, or of what to avoid, what to do, what limits to accept, when to push harder. My oncologist, for example, absolutely recommends against staying in the hospital if it can possibly be avoided. The reason: too many germs. “If you have to go, bring your own pillow,” she told me once. “You don’t know what’s been living in the one they give you.”
Transfusion nurses have given me knowing looks indicating that I didn’t really need a transfusion. An ER doc, during the height of my October 2007 hemolytic crisis, told me that my instincts were right, that I was better off living with low hemoglobin until chemotherapy two days later than risking what I might pick up in a transfusion of non-irradiated blood. This went against the textbook, given that my hemoglobin was 6.6, but it was the voice of experience talking.
The point is, when medical people speak honestly, I listen. So I was quite interested in Brown’s conclusions about transplants.
“I compare his choice with deciding whether to jump from a burning building. Staying in the building means certain death. But if you jump, you might break both legs and take months to heal or sustain injuries serious enough that the complications eventually kill you. But you would be alive when you hit the ground. Maybe it will only buy you a few more rough years. But you might just walk away and live.
“When it comes down to cancer patients making the choice, a few decide to stay in the building. They opt for the quicker, surer death of cancer. Others, for different reasons, don’t have the option of a transplant. But even knowing the risks, I’m pretty sure I would make the leap, endure the free-fall, feel the impact, and hope to be one of the lucky ones who survives to walk back into the life that is waiting for me.”
That is, perhaps, the best metaphor I have run across when it comes to the transplant choice.
I know people who have jumped. Some survived and walked away, others managed with the equivalent of a broken leg. Some didn’t make it, or made it but faced difficult, often life-threatening challenges later on. Right now, one of them, a patient with aggressive CLL who sailed through transplant, is dealing with severe GvHD of the gut.
“This has easily been the hardest three weeks of our lives,” writes his wife. “Not knowing the plan or what was in store was and is so hard for us. . . . (He) isn't out of the woods yet by far.”
This patient was a textbook success until things started to go wrong. His case, not unlike the patient described in Brown's post, are potent reminders. They tell us, to take the metaphor in a slightly different direction, that we patients are playing with fire whenever we make a major decision, and especially when we decide to undergo transplant.
So, what will you do when the building starts to burn?
I will jump, but probably only when the flames get as close as I can stand them.
Over nine years of blogging since transplant for CLL (chronic lymphocytic leukemia) on July 1, 2008 - This picture, painted by son William, launched by blog and was originally painted as a way to remember me after I was gone. Now it just serves to remind...
2 weeks ago