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.

The time I went downhill fast and got back up

With Tami & Nancy in 2008

If you are of the opinion "don't go there" by revisiting a terrible experience, then don't read this, but doing it from time to time puts the present in perspective. I went back and found some old posts that contain a lot about crashing blood counts, so here's a warning that it's not a fun read.

But it comes from the perspective of things being good now, nearly eight years after the events chronicled: of George telling me at our tennis lesson yesterday that my balance is better than ever and of me looking at flowers from the garden in a vase on my kitchen table as I write and listening to Maddie snoring after the walk we just took around the lake.

In any case since I was just at Candlewood Lake, I was curious to see what had exactly happened the last time I went. As I found in this post from Nov. 14, 2008, everything was fine and I even went for a little jog. I wrote about how it poured one time but it didn't matter because we were happy just talking, and how the next day it was beautiful and we walked up the hill and talked to the horses. I was still recovering from my third stem cell transplant less than six months before and was not feeling too perky. I wrote that I asked Tami if she felt winded when going up the hill (she said yes) and then I added, "If I feel that I'm more tired than usual, I begin to wonder if I am getting sick in a little or big way."

Emily had to stay in Pittsburgh to work, so it was Tami, Nancy and me. Check out the crazy hair. Coincidentally Ben was in Pittsburgh and stayed with "Auntie Em."

In those days I reported my blood counts all the time. So on Nov. 24 I wrote a post headlined Good news Monday and said that my white count (4.9) and platelets (164) were normal, though my hematocrit (28.4) was slow coming back.

Although looking at it now I see that the white count was at the lowest number for normal. I then tested positive for CMV, a virus that plagued me on and off and against which I'm still on a preventative which I'll stay on as long as I'm on prednisone, which may be for the duration.

Tennis team dinner

I reported having fun at a tennis team dinner shortly afterwards and then wrote about a checkup that occurred approximately six months after that third transplant. I asked my social worker, Mary Lou Hackett, if I could possibly be hit by the same bus twice; I was trying to get encouragement about the fact that my counts had dropped precipitously: white, 1.4; platelets, 27; hematocrit slightly higher at 25.2 than it would have been because I had had a transfusion the week before. She probably knew I was relapsing because couldn't give me an answer. To see how far my numbers were below normal, click here.

On Dec. 25 I wrote that I was devastated to have relapsed again. It was downhill all the way. I was buoyed by all the comments, words of support and encouragement from so many people, telling me I was a fighter, they believed in my tenacity, reminding me to breathe. I have no idea why in 2008 when writing about the vicissitudes of fate I had suicide bombers on my mind, but this is what I said.

I did live to see the day.

One minute the marketplace is full of lively people. The next minute it is devastated, blown up by a suicide bomber. 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.

Everyone's words and Myra's advice helped me get through. And here we are. As my father liked to say, all is well. 🌻🌹🌷🌼

How do you spell 'Can't get off the couch'?

Inertia.

Its heavy hand pressed me down on my couch this afternoon. I had my cell phone in one hand and the house phone in the other hand, waiting for the world to somehow rouse me. I had given Katie the newspaper I was reading because it contained a story of interest to us. We had been talking about whether dogs always wag their tails involuntarily or if sometimes they can will themselves to "smile" by wagging. Today's New York Times had a related story headlined, "In that Tucked Tail, Real Pangs of Regret?" It was the opposite emotion, but it raised a similar question about how much control animals have over the signs they give. Katie took the paper into the kitchen, and I thought about getting up to take a walk.

But I couldn't get motivated. I called Katie, who was just one room away, but she didn't hear me. Then I sunk pretty low: I called her on her cell phone. She didn't pick up, but soon after she came back in.

"I have a bad case of inertia," I said. "Hey, that's a good SAT word. I-N-E-R-T-I-A." I then gave her a definition, using my current state as an example.

I guess I had good reason. Yesterday Joe drove me to my clinic appointment, where the bright spot was that my platelets were 21 -- out of the teens. My hematocrit, however, had dropped to 27. I told Melissa I could feel that it was dropping. She said not to worry, that it was OK and I'd probably get blood in the next visit or two. Meanwhile I'm in that limbo where I feel more tired, but my hematocrit is not low enough for a transfusion (they transfuse at 25 to 24).

I slept at Diane's last night because Joe had to leave to get back for his job as an umpire. My friend Chip picked me up Newton this morning and drove me home. I guess the back-and-forth probably added to my fatigue.

I did end up getting the platelets yesterday. My nurse in the transfusion room couldn't get the IV in. She poked me twice, each time jiggling the needle for what seemed like ages while trying to catch a vein. I started getting queasy and considered asking her to get another nurse, but she called for help on her own. The other nurse came and got the IV right in.

Nurse number 1 said, "Sorry, I haven't missed an IV all day." Then, speaking of Nurse number 2, who had left, she said, "I'll have to buy her a Starbucks." I almost said, "How about buying ME a Starbucks?" But I didn't see the point. She said she thought I was dehydrated, making my veins flat instead of plump. This earned me a liter of fluids and another hour at the clinic.

Anyway, today I did finally get up and do the mile around the lake. I was walking so slowly that during the time the dog was on the leash, I felt bad for her. I let her off when we met up with a friendly golden retriever who shared his tennis ball and ran in and out of the water with Maddie. So she got her exercise and I got mine, although mine was a bit of a struggle.