My Second Loss: Warm Showers.

(Caveat: this post and this blog do not constitute medical advice. I'm just recounting my experience in case it's of value to you or to someone you love.)

What's Lovelier than a Shower?

I used to take two showers a day: one in the morning, before work, and another after working out. When I stopped going to work, and when my disease made me stop working out the same way, I often settled on one shower before bedtime. Like most people, I loved showers.

Then one evening I took a shower, went upstairs to read, and went crazy.

My body started itching in a new way--tiny pinpricks all over. A prickly and very intense sort of itchiness, spaced like the bumps on a cucumber. This particular time it was mostly my legs, but also my chest and arms. I rubbed and scratched like a mad man, but it didn't help, except for that moment when my hands were passing over my skin. Then one area would settle, but only until my hand was gone.

I figure I took my shower at 10:30. I was still itching and moaning after 2 am. Eventually I fell asleep.

In the days that followed I learned I was experiencing something called aquagenic pruritus, that is sometimes associated with both MDS and CMML. (My doctor disagreed. She said it was associated with CMML and not MDS. My diagnosis was already leaning in the direction of CMML. I can only say that I found a scientific paper linking it to both diseases.) Her advice, and the advice of those I found online, was to take cool showers. Easier in summer than winter, I've learned. People also recommended various lotions and antihistamines. I tried them all. One anti itch lotion called Sarna, works a bit if the itching is mild. Otherwise, nothing helped.

The same thing happened again several times, though usually not as severely. The itching could also appear without a shower. And though I have feared a hot or warm shower ever since my first experience, it also hit with cool and cold showers--so showers have become a frightening experience, a rolling of the dice.

Finally I sunk to the depth of asking our new friend, AI. AI told me that one possible solution was gabapentin.

I actually had some gabapentin. It had been prescribed for a different ailment--a nerve issue--and didn't work, so I never used it. Then one night the itching went crazy, and around midnight I remembered the AI advice and took three capsules-- the upper limit on my prescription. With 20 minutes I could feel the itchiness fading. Within 40 minutes it was replaced with a blessed and warm absence of pain.

Grain of Salt Time.

If I understand it, (and I likely don't; this is not a scientific blog and does not constitute medical advice of any kind, just my experience) the itchiness is caused by excess monocytes crowding around tiny nerves in my skin and irritating them. Gabapentin is for neurologic pain. It works for me. If the itchiness seems mild or transitory I try to get busy and ignore it. If it gets bad, I take two gabapentin, and it usually does the trick. In about 40 minutes the itchiness begins to disappear. A downside during the daytime is that it makes me sleepy. At night, that's a blessing.

But I now fear showers. Mine are quick. I no longer shave in the shower, (a lifelong habit) and I wash my hair in the kitchen sink to speed things up. 

It's a loss--a significant one.

A Brush with--Well, Feeling Like You're Gonna Die

Before I switched treatment centers and doctors, I thought I was going to die. But not from MDS. I thought I was going to die before I got to the ER.

I had stooped to pick something up off the floor. Luckily Rebecca was sitting next to me. When I tried stand up straight I realized something was desperately wrong. What was wrong I didn't know. I must have made it clear, because Rebecca was fully alert instantly. 

"Do you need to go to the hospital?"

"Let me sit for a second." A few seconds later: "I need to go to the ER!"

We got in the car and then got caught in traffic--or so it seemed to me. It was eleven at night and a one mile ride, so I doubt there was any traffic to speak of, or that it actually took more than a few minutes, but I was moaning, and terrified, and a red light was enough to make me crazy. I was certain I would expire in the car.

When we got out of the car at the hospital things settled. I was almost embarrassed.

"What brings you in?" the receptionist asked.

"I think it's some sort of cardiac event, but it seems to be over now," I told her.

I was sent straight back and strapped up to machines. (I'd be finding sticky little sensors for days.)

I was right about one thing--it was a cardiac event. I was wrong about the other thing: it wasn't over.

"You say it's over?" the doctor asked? "Your hearts still beating 170 beats per minute! You're in atrial fibrillation, or Afib."

They were giving me IV fluids and medicine. My heart took its time slowing down.

The next several weeks were weird. My first cardiologist seemed bored of both his life and mine, and was quick to take drastic action. For example, when I told him I still might be having some palpitations (I described it as tennis shoes in the drier) he upped my medicine. When I told him, a week or so later, that I might still be having palpitations he signed me up for surgery--something where they stick a tube through your groin and then fiddle with your heart.

"So I have MDS, and my platelets are pretty low," I said, imagining blood pulsing from my upper thigh all over the operating room.

"Ah, the guy I'm sending you to is great at this. No worries."

I called my older brother. "Cardiology is an art. Let me ask around." He has a cardiologist friend who made an instant, emphatic recommendation.

Luckily the new doctor agreed to see me. When I told him I was booked for surgery he looked alarmed. "I like to take things one step at a time," he said.

So do I! This doctor listened, and we worked out plans together. 

It occurs to me now that I hadn't met him yet when I first visited my new oncologist at the "Center of Excellence," but the medications that he and the prior cardiologist prescribed would come into play a few years later.

A Trip to Italy and My Doctor Disappears.

My status was "watch and wait." This never sounded good to me. I thought about those celibate guards on Game of Thrones who stood on the icy wall watching and waiting for that creepy killer. I felt like Vladimir and Estrogen waiting for God knows what.

Every two or three months I'd go for blood tests. They were always considered "stable." 

(What about those monocytes?" I'd ask. "Yeah, these things go up and down," my doctor told me.)

My doctor gave me two solid pieces of advice. He told me to limit my drinking to four drinks a week. I did so and my red cell numbers improved. I could walk without stopping for breath.

He also told me to go ahead with a long planned, two month trip to Italy. I had arranged tiny apartments all over northern and southern Italy and intended to spend several days in each spot exploring on foot. I will be forever thankful for that trip, which was my second in as many years--a compromise with my wife, Rebecca, who, who couldn't spend the months I wanted to spend abroad, but who came to join me for stays in Rome, Naples, and Sicily. The trip did me a world of good. I (then we) walked for miles every day. We climbed various heights in Naples and Taormina. We heard great Jazz and ate aranciate in Palermo. We ate burgers in Messina while a religious parade passed nearby. We went to our favorite dive restaurant in Rome and dove into their delicious beef and pasta. I came home stronger than I'd been in a while.

Then I realized it was time to get more blood tests. Normally they'd remind me and work out a time. This time nothing. I called and found out the doctor was gone. No one had told me so I didn't ask where to find him. Instead I called a "Center of Excellence" (a really reputable cancer clinic) and made an appointment to continue watching and waiting there.

I hoped I would be watching and waiting forever--or at least until something else got me.

It was not to be.

My First Loss: Running

My last good run was during covid. I know because I remember being far from home and pulling a bandana over my face when I ran near other people.

Then one day I slipped, caught myself, and somehow hurt my knee. I couldn't run for a couple of months until it got better. But after that, I could never run again.

From my late forties until my early sixties I had been a slow marathoner. I never thought of it as a competition, but my long, slow training runs kept me sane and in shape. I loved running for miles along the Lake Washington shore, or anywhere, really. I'd been something of a runner since the late 1970s. I used to be reasonably fast, but in late middle age I was happy to lope along. 

Then, suddenly, I couldn't run four blocks. I would be forced to stop, with chest pain and panting. I'd walk a bit and try again, and it would be worse. The chest pain was a kind of burning, like you felt as a kid when you ran too fast or too long.

I knew how to get in shape. I expected to get in shape. I knew to take it slow and build up mileage. But I remember telling doctors that I was having a hard time doing so.

Then I stopped being able to walk without stopping for breath.

I have walked long distances, alone, for even longer than I jogged or ran. I'm autistic. I walked for miles, enjoying the world, talking to myself, and working out problems. But all of the sudden, even on short evening walks with my wife, Rebecca, I had to stop for thirty seconds or a minute not so much to catch my breath, but to feel normal again.

Finally, I ran into a physician's assistant who actually listened and cared. She ordered up a CBC, or complete blood count.

In those days all I cared about were triglycerides and cholesterol. In my late forties and early fifties both had been really high. I gave up certain foods and they dropped to normal. So when I got my results I saw that those measures remained good and celebrated. I sounded like Trump. I wrote to friends and family that I'd "aced" my blood tests.

Then I began to see red.

My hemoglobin and hematocrit were red. My red blood cell count was red. My platelets were red. All of them were below normal. Something called monocytes were red, too, but higher than normal. There was a longer list of blood elements I'd never heard of, all red.

The physician's assistant called. She told me she would make me an appointment with a hematologist. I figured that was a blood doctor. I showed up to meet him, and realized I was in the oncology clinic.

He looked at my lab results and told me he was going to send me for a bone marrow biopsy, which sounded grim.

And that time, it was. 

I showed up and they put me in a hospital gown and a green shower cap. I asked repeatedly for something to ease my anxiety, and they told me not to worry--that I would be given something to make me calm and sleepy. It didn't work. It made me hyper alert and anxious. 

They put me in a giant scanning machine to find the proper spot to nail me. What I knew was that they hadn't nailed the anesthesia. I was anxious as hell.

I remember laying on my stomach in the procedure room and watching as the nurse or assistant brought the doctor a tray of tools. One of the tools was a silver hammer. They began to joke about the hammer as if I weren't there. They were like a bunch of carpenters making inappropriate jokes on the job. I think they thought the drugs had put me to sleep, but I was staring at the hammer with what had to be a look of grave concern. My concern grew more distinct when the doctor began hammering something into my pelvis. It didn't hurt, but it felt alarming, like carpentry work.

Months later I would wonder about the hammer, and if it was even real, or maybe just a the figment of a drugged imagination. I did some research. Sure enough.

(For people going for such a procedure. I was forced to change providers. At the next place there was no hammer, though I wouldn't have known because the anesthesia was so perfectly handled. No scan, either. No funny shower cap. No hospital gown. So what was for me a little unpleasant and uncomfortable event is not the standard.)

At any rate, the biopsy brought glad tidings. I seemed to have something called MDS, but I'd lucked out. My MDS was considered very low risk. Could things change, I asked the doctor? "It's an unpredictable disease," he told me.

I continued getting blood work done and noticed that my monocytes kept climbing. "What does that mean?" I asked. The doctor seemed unconcerned. "These numbers go up and down," he told me. 

Except that mine didn't. My monocytes kept going up.