Well, we went to Fred Hutchinson (FH) Cancer Institute today to speak with R’s cancer specialist, Dr Anna Halpern.

Earlier this month we traveled to Houston for a second opinion at MD Anderson (MDA) Cancer Center. The doctor there was quite firm–R must have a bone marrow stem cell transplant (BMT) in 2025. His lifespan without it will be 2-4 years, and it’s only a matter of time before it turns into Acute Myeloid Leukemia, which in this situation has a poor prognosis and few treatment options.

Since then, R and I have been discussing how our lives are about to radically change–the risks involved with the BMT (painful and exhausting afterward and sometimes even deadly), how we might need to modify our house for R’s recovery, how we’ll need to cancel travel plans, how I should document all the bill-paying stuff because R handles most of it, the impact on our kids and grandkids, etc. We’ve been in a haze for two weeks processing it all.

The one thing I thought we’d have after our appointment today is a clearer plan—primarily when it will happen. How much time do we have with life as we know it, and what happens next?

Instead, Dr Halpern said, “R, you don’t HAVE to have the transplant next year. There are pros and cons either way. It may cure the cancer, but there’s no guarantee it’ll improve your quality of life. Some people suffer terribly from the after-effects. Others have a recurrence of the cancer and need a second transplant. And…others are cured and go on to live happy, healthy lives.”

MDA: We don’t usually do transplants after age 65. FH: “We do transplants until the age of 75.

MDA: R must have a smaller spleen before he can have a BMT. FH: R’s spleen, while still too big, is an okay size (not preferable) for transplantation.

MDA: You can try any of these three medications to help with your chronic anemia. FH: We don’t use those medications much because they can have terrible side effects.

MDA: R should not use his brother’s stem cells because cells from a younger donor will work better in the long run. FH: That’s not necessarily the case; the transplant team will make that determination.

By this time, my head felt so heavy I could barely hold it up. R felt rejuvenated. He may not need the BMT so soon, and he’d like to hold off as long as he can.

Next, we’ll meet with a transplant doctor (Rachel Salit) to learn more about the transplant itself—the process and potential short/long-term health impacts.

On the drive home, I told R there are a few metaphors for how we’re emotionally responding to this. When I get a splinter, I must dig it out immediately, even if it hurts like hell. The thought of having the splinter inside me is almost unbearable. R will leave a splinter alone and let it work its way out over time. When I have a split nail, I cut and file it until it’s perfectly smooth. If I don’t have a file, I stop and get one ASAP. R will live with a split in his nail until it starts catching on things and hurting.

I want answers. I want a plan. R is okay with uncertainty and willing to wait things out. In the end, I am here to support him–in whatever ways he most needs me to. But the cloud following us around is always there.