Dear Friends and Family,
Yesterday I wrote you about our fun-filled time at home.
(That was yesterday.)
Today began something like this:
“Good morning, sweetheart. How was your night?”
“You were asleep the minute you hit the pillow, Winnie.”
Uh-oh.
Once again, my bride’s southern roots were in full display. She avoided my question.
“I know, Nancy. I was exhausted. Chuck and I rode hard after work. And the clinic was way too busy for a fall day. But what about you? Did your leg bother you?”
Nancy’s sciatica has been a nagging issue since her last hospitalization when she overdid her exercise. (She’s not allowed to take anti-inflammatory drugs because of her blood-thinning medicine.)
“It did ache last night. So I took a pain pill. That helped. But . . .”
Nancy didn’t have to finish the sentence. I recognized the look on her face. She’s having difficulty sleeping for the same reason I am—we’re both thinking about the decision.
As we wait for the final word from the hospital that our “angel” donor is medically fit and willing to share his precious bone marrow, it isn’t difficult to be constantly (and rightly so) preoccupied. Nancy and I both find ourselves continually ruminating over the sound bites we’ve heard from experts in the field of leukemia. We’ve found many hematologists and oncologists willing to discuss Nancy’s case, but their voices reflect the uncertainty of current knowledge.
The day after one prominent doctor made the statement, “I see no reason for Nancy to attempt an unmatched Allo (or full transplant). It’s too risky,” another specialist summed up his opinion with, “A standard full transplant gives Nancy the best chance of a durable remission (or cure).”
Other calls I have made have ended with, “There is no wrong answer or choice in Nancy’s case” or “At our center, we’d consider an autologous transplant.” (An option that has never even appeared on our radar screen.)
We have been told so many conflicting things by so many well-meaning experts:
“Chemotherapy alone might be the best way to go.”
“A mini has the same numbers but with far less toxicity. The full transplant has a 20–30% mortality rate in the first month.”
“The study using the mini has only twenty-five subjects. It is a very small study.”
“The full transplant has been around for years. The study comparing it to the mini isn’t finished. It won’t be done for another couple of years.”
The single insight that has helped us more than any other to get through the complex and sometimes conflicting studies and statistics is something our doctor Finn Bo told us: “You can change your mind up until the first day of the ‘conditioning’ regimen of medicines that will ablate your bone marrow. Once that starts, there’s no turning back.”
“Was your mind racing again, Nancy?”
“Yes, one minute I think I want the mini, the next the full.”
“What do you think, Winnie?”
What do I think?
I think I’m scared and sad. I am extremely sad. I think I want to scream. I want to stop thinking. (What I really want to know is what Nancy is thinking about in the middle of the night, in the darkness.)
What I am thinking is, “How can I help?”
“Nancy, I think that whatever you decide, we’ll be all right. I think—no, I know—that you are really physically and mentally strong now. I’ll be holding your hand the whole way. And you have so many people rooting for you.”
“Will you make breakfast today, Winnie?”
Summary: We are wading through the various transplant alternatives. There are many divergent opinions among the experts as Nancy’s transplant date comes ever closer.
Fondly,
Winnie