On October 15th, R and I saw a doctor at MD Anderson Cancer Center in Houston. The doctor seemed well-versed in R’s health history, including lab work results (blood counts), spleen size (still much too big), gene mutations (JAK2 and ASXL1), the level of fibrosis (scarring) in R’s bone marrow, among other things.

The biggest takeaway is that R’s status is between medium and high risk. In the myelofibrosis world, that means that R would have a lifespan of 2-4 years without a transplant. As such, the doctor strongly recommended R get his bone marrow stem cell transplant (BMT) next year. While R still feels pretty darn good with symptoms that don’t get in the way of his daily life, his bone marrow is telling another story. The thinking is that every year R waits, the risks associated with the transplant become greater. R is still a young 62 years old! He’s healthy other than this damn disease. The time to do the transplant is fast approaching, giving him the best chance for a cure. There’s no quibbling about that. The only chance for survival is a BMT.

R has been taken off the Imetelstat drug trial. The objective was to reduce R’s anemia, but it hasn’t worked. In fact, it’s made his anemia worse. So…R will continue taking the drug he’s been on (Jakafi) in a continued effort to further shrink his spleen, which is still 18 cm. A normal spleen should measure no more than 12 cm.

A reminder about the anemia–this is not the kind of anemia that an iron supplement can help. It’s anemia because R’s bone marrow is turning into scar tissue, and it can’t make enough healthy blood cells, so his red blood cell count is way too low.

And another reminder about the spleen–doctors do not want to do a splenectomy (spleen removal) because of the high risks associated with the surgery. R’s immunity is compromised, so his chance of infection is greater than for other people without primary myelofibrosis. And, apparently, they do not want to do the BMT with a spleen over 12 cm. We’ve heard “it compromises the success of the BMT if the spleen is too large,” but I am not sure why. We’ll have to ask the doctor about that.

Another recommendation from the doctor at MD Anderson–R should use an unrelated donor. While R’s brother is a perfect match, the doctor said it would be better to find a younger donor (healthier stem cells). He said there would be no trouble finding a perfect match in the international registry. That’s good news!

R has his next appointment with his Fred Hutch doctor, Anna Halpern, on October 31st. We’ll consult with her to discuss next steps. Our lives are about to be upended, but we’re okay, I promise. We’ll get through this together. We’ve weathered some enormous storms during our time together, and we’ll come out of this stronger and ready for a new lease on life.

I’ll keep you updated as time passes. The transplant and what comes after are daunting, and I want to document our experience so others can learn. This blog is read by not only friends and family but also patients with the same disease.

In the meantime, we’re living our best lives. Time with family and traveling are our salves. We’re retired and want to continue all the things we love for as long as we can. We went on a cruise this year as well as a safari in Zimbabwe. We’ve been on camping trips and started picking up our granddaughter after kindergarten on Wednesdays. Those are fun afternoons! Life is good, and we love each other and our family beyond measure. We have lots to be thankful for. I met R when I was 14 and “fell in love with him” right away–as much as a 14-year-old can know about romantic love. We married when I was 21 and celebrated our 38th anniversary in July. What a charmed life I’ve had with this loving, attentive, talented, patient, intelligent man–and he’s handy around the house, too!

The support of family and friends has been tremendous and heart-warming. We love and appreciate you all so much.