10 years ago, it was downhill all the way

Callen and Nell

I haven't been running that much, but yesterday I decided to see how I did with some hills, back and forth to Brunelles Marina. The early registration email from the Saint Patrick's Race committee got me thinking.

A man walking down the road was going faster than I was running. If I were to do it again and didn't want to finish last, I would have to try to figure out how to get a little faster. First of course I'd have to see how I felt going a longer distance. The neuropathy in my feet is not a big help.

When I checked at home, I saw that I had gone 3.8 miles. Then I drank coffee and walked Maddie, for a total of the 6.2 miles, the same distance as the race. Doing it broken up with coffee in between, and a dog walk at the end, would be the way to go.

I thought about how it's coming up on the 10th anniversary of my second relapse of acute myeloid leukemia. Back home, I looked it up in my handy reference, my own blog.

In hindsight I know what was happening. Looking back, I can still feel the grip of uncertainty and panic. Here are some excerpts. Maybe you want more, maybe you don't. If you want the whole post, you can click on the link. For reference, the CMV to which I refer is Cytomegalovirus. It is not dangerous to most people, but it is to people with compromised immune systems like I had.

Dec. 12, 2008, Transfusions and rashes and shakes. I survived the long day at the clinic, but it wasn’t easy. My white count was down to .9 (normal is 3.8-9.2) and my hematocrit was down to 21 (normal is 34.8-43.6). I wondered how I had been able to walk the dog nearly two miles the day before. I guess I was running on reserve power. I needed a platelet transfusion in addition to needing blood; I figured if my platelets were that low, I didn’t really need to know the number, because it would only spook me. This being the third downward spiral after a combination of CMV and Valcyte, the drug used to treat it, they switched me from the Valcyte to a different drug, Valtrex, which looks like a horse pill and needs to be taken four times a day. They said this drug should hold down the CMV but not mess up my counts.

Dec. 16, 2008, Spending some uneasy time in limbo. My counts were still low yesterday: WBC was 1, hematocrit was 24, and platelets were down at the “don’t ask, don’t tell level.” I know I could ask, but for some reason I get especially rattled by low platelet levels. I got platelet and blood transfusions, with 50 mg. of Benadryl and a steroid to stave off a platelet reaction, and ended up staying the night at Diane and David’s, this time being rescued by David because Diane was out of town. It also appears that on top of the already low white count, I may have a virus that is further suppressing my counts. I've had an on-and-off low-grade fever, but I feel OK. Yesterday they sent out some blood samples. So the primary suspect is the CMV, the Valcyte and now a new virus, and when the virus goes away my counts should come back.

Dec. 18, 2008, Biopsied, transfused, and still wondering. The counts were not better today, unless you consider the hematocrit, which was 25 after Monday’s transfusion. This was still below normal but high enough to avoid a transfusion. My white count was .6, which is quite low. I knew my platelets were very low, due to the red pinpoint dots (Petechiae) that were making my legs resemble a pointillist painting. As I’ve said, I really have no interest in knowing my numbers when my platelets are extremely low. Today I found out by accident. I went into the infusion room in search of the lunch cart, and I bumped into my nurse from the other day. I told her that my blood counts weren’t back yet, but that I thought my platelets were still low. “Well, they were only 2 the other day, so I’ll just get the order going,” she said. Two? When they were 164 (normal is 155-410) just a few weeks ago? The chimerism from recent blood work, showing the percentage of donor, is still not back. After I got my platelets today, Melissa did a bone marrow biopsy, which will provide a clearer picture.

Dec. 25, 2008: Downhill all the way. It’s been a terrible week. I felt really sick all weekend, and when I called Dr. Alyea Sunday, he said to go to the Brigham and Women’ emergency room in Boston, from where I would get admitted. He also said he was sorry to tell me on the phone, but the pathology report on the bone marrow biopsy report showed that I had relapsed. I had to get to the hospital in a snowstorm, so I didn’t have time to digest it. I still haven’t digested it. I have been crying a lot, picturing myself at the end of the road. Thinking I won’t see my children finish growing up, won’t see my grandchildren. I guess this is my mind’s way of going through the mourning process; I hope to get to the acceptance phase soon. I wandered over to 6A (my home for the last transplant) from 6C (where I am now). Myra, a wise, funny nurse, who's been doing transplants for ages, knew what had happened. “Well, you have 48 hours to have your pity party, then you have to quit it and put on your fighting gloves,” she said.

I had my pity party, and then I put on my boxing gloves.

Through luck, an amazing team at the Dana-Farber Cancer Institute, the strong stem cells of my donor, a little stubbornness on my part, absence of the challenging FLT3 mutation, and a lot of help from my friends and family, I did get to see my children grow into wonderful young adults and I did get to see those adorable grandchildren.

It's hard to believe that it's 10 years after those challenging days.