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. 🌻🌹🌷🌼

Dana-Farber day

I had a 9-to-5 day today, spent driving to Dana-Farber, having my check-up there and talking to various people.

There was a lot of traffic. Each way, when I had been on the road only about 20 minutes, I was overcome with fatigue and had to pull over and sleep. This despite coffee both ways. I just sleep for about 15 minutes and then I'm good to go. I really don't know why this happens, but at least I caught myself in time to pull over before I got in any trouble.

There was a lot of construction around Dana-Farber, and I sat in traffic for at least another 15 minutes or so. I was afraid that I would miss my 11 a.m. appointment with Mary Lou Hackett, the social worker who I hadn't seen for months. Ambulance sirens were blaring, and people seemed to be leaning on their horns. It was enough to make your blood pressure rise.

I had less than a half hour with Mary Lou, but I always find it comforting to see her. We have been together since the beginning, and she always has a story to illustrate that whatever you are feeling is perfectly normal. She said that at this time of year she thinks often of my mother, whom she calls one of her favorite people. My mother died on Nov. 26, 2006. Naturally, I think of her too.

I got 12 vials of blood drawn around noon and didn't have to wait as long as usual for my appointment. (It was scheduled for 1, and I got in around 1:30.) Because I have been feeling so well, I was pretty confident that my hematocrit would be higher, and it was. After being abouy 26 at my last visit, it was 33.7, almost normal. (Normal is 34.8 to 43.6)

My white count was normal, 7.8 out of a range of 3.8-9.2, but my platelets were still pokey at 65 (normal is 155 to 410) after being in the 90s a couple of visits ago.

Dr. Alyea said this could be because signs point to an increase in my Graft vs. Host Disease. My liver enzymes are still elevated, and I have a higher number of eosiniphils, a type of white blood cell that rises above normal when inflammation is present.

Instead of increasing my prednisone a full dose, I am going to try alternating my current dose, 5 mg., with 10 mg. every other day. He said doing it this way usually heads off side effects. Let's hope.

We chatted briefly, and he asked me how I was feeling. I said I felt good and told him about my ace from last week. We often discuss tennis, and he was happy to hear my news. This is so much better than talking about serious problems.

My friend Dr. Francisco Marty, an infectious disease specialist who always made me smile even when I was sickest, was around in the clinic, and Dr. Alyea said he wanted to say hi to me. Dr. Marty, in addition to being a medical specialist, seems to have a lot of thoughts about hair. "You need a haircut," he told me when my hair grew in scraggly and I hadn't had it cut. He said it with a smile, so I wasn't offended. Today he said, "I like your hair." Bingo! He is also a talented photographer with his own website, on which he said he had recently posted some new close-ups of roses. I checked it out and they were beautiful.

When I met him in the hall just a few minutes after seeing Dr. Alyea, he said, "I heard you had an ace." I guess important news travels quickly.

I had wanted to get back on time for yoga, but it took me too long; I actually got back around 5:45, 15 minutes after the class had already started. I needed to do something. So I quickly changed into my running pants, long-sleeved T-shirt and sweatshirt, throwing my good clothes onto the bed.

It was dark but not too cold. I walked down to the Lower Lake, the one that is paved and well-lit, and started to walk. I didn't really mean to run, but I ended up jogging about a mile and walking another mile.

That reminded me of the old me, the one who, after a long day, often quickly changed and went for a run. It's not exactly the same kind of run, but it was a variety of normal, and it felt good.

Oy vey, I have shpilkes

In light of my financial problems, the words that I heard coming up from my cellar yesterday were especially scary.

Having finally broken down and turned the heat on a couple of weeks ago, I really wanted heat on Tuesday, a damp, rainy day. I felt especially tired and was not happy to realize the heat on one side of the house was not working. We have two systems, one for the old part of the house (built in 1848) and one for the new part, an addition built in 1992 and comprising my bedroom and the kitchen. The new part was cold Tuesday. I called Bay State Gas, our heating contractor, and a technician replaced a broken part and said we were good to go.

We briefly had heat, but by yesterday it was broken again. So another guy came. After he went down to take a look, I heard these words: "Oh no! Oh no! Oy vey, oy vey."

This is a little like hearing the surgeon say, "Ooops."

I held my breath as he came up the stairs. "What's the problem?" I asked, imagining an expensive repair.

"Whoever put that burner in did a bad job," he said. "They put it in backwards so I had to stoop under the pipes and crank my head around to see the dials and it hurts my back. I'm too old for this."

By the way, he said, my problem was fixed. The previous tech had simply forgotten to clean off the sensors. He didn't look that old to me, but what can you say.

I still had the glow of the benefit, but the week started off so-so. When I saw Dr. Alyea on Monday, he said I was doing very well. He didn't seem concerned that my platelets were back down to 13 (still in double digits, however) and my hematocrit was 22. My white count continued to be normal – a good sign. He said there was an option for boosting the platelets and rbcs, and that's a stem cell infusion from the donor. But he'd rather not do that, because it includes the risk of more – and possibly more serious – graft versus host disease. So he continues to believe my marrow is just taking its time recovering, and that we should be patient.

I know, I know, but sometimes it gets to me, especially after a day like Monday. I got in a chair in the infusion room at 3 p.m. and got my bag of platelets pretty quickly, but there was some glitch at the blood bank and my order wasn't processed on time, so the blood didn't come until around 5:30. Which meant I didn't get out until after 7:30. I was so tired, I called Jim and asked if he could stay with Katie that night. He said yes, so I stayed at Diane's and left the next morning. Diane gave me a nice plateful of dinner, and we had a little slumber party.

I hate to keep complaining about long hours spent at the clinic, because I know it happens to most everyone. Still, the long day, combined with my tendency to catastrophize about the low counts (I won't even go there) kind of brought me down.

I tried to describe my unease to my friend Deb Doner. "You mean you have shpilkes," she said. "What?" I asked. "You know, shpilkes." I didn't get the spelling of this great Yiddish work right, so Meryl and Danny told me, and I looked it up in a Yiddish dictionary. Shpilkes: pins and needles. Zitsh oyf shpilkes: Sitting on pins and needles.

This bit of research caused me to relax a bit. Somehow it's comforting to know there's a Yiddish word for my state of mind.

And, as my father liked to say, "This too shall pass."

Put more bluntly, even though he'd never say this: Stop kvetching.

Trying to stay up in a downturn

I expected my counts to be low at today’s visit, but I was unpleasantly surprised at how low they really were. After being great two weeks ago, all of my counts are below normal because of my third bout with CMV and because of the drug Valcyte, which is used to treat the virus but which also suppresses bone marrow production. For more details about the "stupid virus," see last week's post about it.

My platelets were 27, white blood count 1.4 and hematocrit 25.2. The transfusion from last week helped somewhat, but not too much. The CMV results take longer than the rest; after last week’s test, the virus was actually gone. When I get the results of today’s test, which may come in tomorrow, we will hope that it is still negative. If so, I can begin tapering the Valcyte. The question is whether anything can be done to stop this cycle from repeating itself. I am totally stopping my last immune suppressant, Prograf, which should help. We’ll see if they come up with anything else.

I need to return Thursday for blood work, a probable bone marrow biopsy and, if needed, transfusions. As soon as I got home today, I gave myself a shot of Neupogen to boost my white count. I’ll give myself another shot tomorrow and Wednesday.

I’m just about six months out, which is where I was when my counts crashed in April, signaling the graft failure which led to my third transplant (the second if you don’t count my autologous transplant in 2003). Naturally I am jittery about the same thing happening again. But my low counts correlate with the CMV and Valcyte, and Melissa said to try not to worry.

Today I also saw my wonderful social worker, Mary Lou Hackett. Of course without revealing their identity, she often mentions long-term survivors who’ve been there, done that. She has said that in the first year after transplant, many people experience ups and downs with their counts.

Like a little kid, I asked her today if she could tell me the story about the people whose counts go up and down. It’s reassuring to hear repeatedly that I’m not the only one it happens to.

I told her my worries about the six-month mark, and asked her what she thought about my concerns.

“What do you think?” she asked.

“Well,” I said, looking out the window at the busy Boston street. “If a bus hit me on the corner six months ago, it doesn’t mean that another bus will hit me in the same spot today or any other day.”

She smiled.

I smiled. I thought that was a pretty good answer. Now I just have to believe in it.

Good news Monday

When possible, it's nice to plan something special for yourself in conjunction with a visit to your doctor's office or to the clinic. This doesn't have to be something big. It can just be some little treat.

Sometimes I see a friend in Boston or stop by Diane's. Occasionally, we go shopping. Again, I'm not talking about buying something big, although I did buy a necklace at my favorite shop in Newton Highlands on a brief (masked) shopping trip with Diane.

Yesterday's visit had a built-in treat. My friend Mieke, who moved to Chicago at the end of the summer, is in Western Massachusetts for a week, and she went with me to Boston. Mieke is a relatively new friend; we met at the newspaper where she was a photographer and where I, athough on leave, am still on staff. We hit it off immediately when going on assignment together and soon became good friends.

Yesterday, we talked and laughed the whole way into Boston, fueled by a muffin each and a Starbucks to go (ouch, I sound like an ad again, sorry), and before I knew it we were there. I was so relaxed that I even forgot to get nervous at my usual spot when approaching Dana-Farber. We talked in the waiting room, and I forgot to worry about my blood counts. And when the counts were good, I was happy to share the news with my friend:

White: 4.9 (normal, yay!)

Platelets: 164 (normal, yay!)

Hematocrit (28.4) and hemoglobin 9.9...down a bit and kind of pokey.

Dr. Alyea reassured me that he wasn't worried about the red count, which often takes the longest to recover. He also told me that I could go every two weeks instead of every week.

I had already graduated once to the two-week plan, but my visits were increased to weekly when my counts went down earlier this fall. It makes me a little nervous to go back to two weeks. I don't actually love spending the whole day going to the clinic, but I do like the security of getting checked once a week.

Oh well, with Mieke to talk to all the way back, I didn't have time to dwell on it.

**************************

In another encouraging sign about the success of new therapies in the war against cancer, the Cambridge, Mass.-based biotechnology company Genzyme said yesterday that it has asked the FDA to approve its drug Clolar (clofarabine) for treatment of acute myeloid leukemia (AML) in previously untreated adults 60 and over whose leukemia may be resistant to standard chemotherapy.

The drug is currently approved for treatment of acute lymphoblastic leukemia (ALL) in relapsed patients one to 21 years old who have received at least two prior treatments.

The long wait was worth it

I always expect to wait in the clinic for a while before my checkup, but today the waiting time was close to a record: two hours. I came, as usual, prepared with today's New York Times, leftover sections from yesterday, the book I am currently reading ("The Story of Edgar Sawtelle") and my little blue notebook, in case I need to jot down a question or a random thought.

I went through the newspaper and was reading the book when I finally got into a room. Sometimes I get caught up in thinking that delay signals bad news for me, and then my heart rate picks up and panic sets in. Today, though, I did a pretty good job of keeping the lid on. Maybe it was because I was so tired. I almost fell asleep in the chair. I did, however, have to resist my impulse to run into the hall, grab anyone with a white coat, and say to them, "Please, just turn on the computer and tell me my counts!"

Today I was scheduled with nurse practitioner Melissa Cochran. Finally, she came in. I knew the delay wasn't her fault; sometimes the whole system just seems to get incredibly backed up. Melissa apologized for the wait and asked me how I was feeling. I said generally pretty good, although I've been having some stomach problems.

She turned on the computer.
Drum roll ...

My white blood count was up to 3.8, in the normal range of 3.8-9.2. I can't remember when my WBC was last in the threes.
Hematocrit was up to 31.1 (normal is 34.8-43.6). Hurray for Aranesp!

Platelets were down a little, from 141 ten days ago to 133 today. (Normal is 155-410.) But 133 sounds good compared to my low of 4 during my last hospital stay.

If the counts are low, I usually toss the printout.
Today, I kept it. After quite a bit of worrying during the past week, I was, naturally, very happy.

Plus, Melissa said I could get a coffee for the drive home. By now it was rush hour in Boston, and I knew that door-to-door the drive would be at least two hours, so I was happy I could get coffee.

For the first time, I walked into a Starbucks and got a coffee.
Now, that felt normal.