Catch-up: More pain and tiredness at home

Thursday morning I was still high from my infusion of steroid the day before. My back pain was greatly reduced, but I was very anemic, causing a push-me-pull-you kind of effect. I’d bend and reach and stand and everything seemed okay. Then I’d take half a dozen steps and collapse, winded, against a wall.

I was already scheduled for a blood transfusion this morning to address the anemia. I didn’t sleep well last night, or nearly long enough, so by the time I arrived at the Cancer Center, I was in such agony that we had to deal with the pain first before getting on with the transfusion.

Another cocktail of intravenous drugs: steroid, Dilaudid (said to be a Lenny Bruce favorite), anti-nausea, hydrating fluids, followed finally by two units of blood. I was in the Center all day, drifting and dozing and accepting the mix of fluids into my body.

Now that I’m home, I’m very much needing to sleep, but wanted to get some information up here first that I know some friends have been waiting to hear.

There will be more tomorrow….

Catch-up: Doctor visit on 12/10

So much has happened in the past couple of days, it feels like a week has passed since my last post, so I’ll probably have to break this up into multiple entries.

I was due to see my doctor on Wednesday for treatment and to discuss scan results. When she walked into the examination room, I was curled up on the table, asleep.

“This isn’t you,” she said, shaking her head.

“I’m exhausted all the time,” I explained. “and in pain.”

I told her about my experience with Advil the previous afternoon, how two little blue gel pills had done more to address my pain than the morphine I’d been taking for a week before.

“It’s obvious the pain is inflammatory. We can fix this.”

She had already included the usual dose of Decadron in my premeds, and she prescribed the same steroid for me to take in pill form at home on a daily basis. Steroids are longer acting and don't interfere with clotting, as ibuprofen can. When we begin to see reduced inflammation from the steroid, we can also start tapering back the Fentanyl patch dosage, since it's not a good idea to alter too many variables at once.

Also, Fentanyl is a strong, addictive, narcotic, and we’ve all read stories and seen movies about “cold turkey.”

So for now, we just add daily steroid.

It worked

I’m so grateful for the drugs I got yesterday; I couldn’t have gotten through today without them!

I got up really early to finish preparing materials for my class, and I was on my feet a good part of the day from 10am to 4pm, presenting new skills to a very mixed group of nearly twenty students, and walking around to help those who had trouble getting it. A lot of up-down-sit-standing. I’m tired and achy now, but not nearly as bad as I was a few days ago.

I'm "coming down" from the steroids, but I actually feel kind of high through the haze of tiredness; it feels so good to feel productive again!

Feeling some better

When I got to the City this morning for my appointment, I had to take a cab to the Cancer Center. I usually welcome the exercise, but this was the first time I was unable to walk the ten blocks from Grand Central.

The nurse who took me in looked twice. “You don’t look so good.”

“Is my color grey?”

“You’re very pale.”

She sent me down to the treatment floor while the lab tested my blood. Sure enough, I’m anemic, very much so. My hemoglobin counts were almost low enough to consider a blood transfusion! That accounts for some of the tiredness. And it occurs in reaction to both chemo and melanoma.

I got a massive infusion of “fluids” in addition to the steroid. And at the end I got a shot of something that boosts red blood cell production.

I left with prescriptions for more and stronger pain patches, a new anti-nausea drug, Reglan, an increased appetite, and a confidence that I can get through tomorrow without passing out.

Lost a month

I slept through most of November. Serious sleeping. Twelve hours a night plus another three to four hours of naps. The only place I could get close to comfortable was in bed. I’d get up and walk into the bathroom, my office, or downstairs to the kitchen and be completely winded. The effort to remain upright made me nauseous. Sometimes I just lay in bed listening to the radio. (But how many times can you hear the same sordid news stories without going crazy?!) I didn’t have the focus or concentration to do much of anything.

And I was in pain: lower back, shoulders, upper arms, thighs, and occasional shooting pains through my spine.

It was a lousy month, culminating in exhaustion throughout the Thanksgiving Day weekend.

There were good things about the weekend, of course. My daughters were home and we all shared quality time. I lay on the couch and gave directions while my younger daughter baked a wonderful pumpkin, cheese fondue appetizer for the holiday meal. My daughter drove us to New Jersey for a terrific meal and a day full of family, love, and warmth in my niece’s home. While others drank wine, I filled up on some of the best apple cider I’ve ever had, made by my younger daughter and her boyfriend with their antique cider press. Thanksgiving is my favorite holiday!

But by Sunday I was in tears. I’d expended more energy than I had in weeks and I was paying for it. I contacted my doctor via email and told her how I felt. I asked to come into the office on Tuesday for an infusion of steroids in order to get me through a client commitment on Wednesday.

“Sure,” she said when she called back, “and I want to have you scanned sooner, rather than later.”

I’d been scheduled for my next scan on December 31, but all of these unexplained symptoms were a surprise. Were they from the chemo? From the Fentanyl pain patch? From the melanoma? She’d been expecting me to feel better after my second infusion on November 12 but here I was, in pain and getting weaker and more listless. I could hear the concern in her voice.

So the plan is to go to the office for steroids and rehydrating fluids tomorrow, in order to shore me up for the client presentation on Wednesday.

In the meantime, I increased the dose of the pain patch last night and was pleased to find it made me feel better already. Well, that’s a little misleading. I got up in the middle of the night to go to the bathroom and was surprised at how little pain I felt. I wasn’t winded. All good, until I got to the bathroom and was overcome with nausea; I vomited before I had a chance to take an anti-nausea pill. In the morning I woke up nauseous again.

One step at a time.

Crossed wires

I arrived at the doctor’s office for my 9:30 AM appointment to draw blood. The phlebotomist stared at two test tubes, looking confused. “One is marked 8 AM, the other says noon.”

My doctor poked her head in. She had gotten an ad hoc request from the research committee for additional blood, but she hadn’t gotten the message until 9 AM. We could draw one sample now and another in four hours. Could I plan to come back?

Fortunately, I was planning to stay in the City after my appointment, since I’d arranged to go to a client.

When I got back to the medical office, I had another few minutes with my doctor. I told her I was feeling dizzy earlier, vaguely nauseous. “That’s not a typical side effect. Have you eaten?”

“Not really. I’m also feeling wired, jazzed.”

“Well that is typical. Before the Abraxane yesterday, we gave you a steroid, which can make you feel wired for 24-48 hours. You’re reacting to that. And you will crash.”

Oh dear… elephant alert!

After drawing blood, I walked to Grand Central, where I had just enough time to grab a slice of pizza before getting on a train. I sat down to eat it, took one bite, and felt the color drain from my face. I was suddenly faint, nauseous, sweaty, and clammy. I ditched the pizza and headed for the train, but got only as far as the nearest police stand. They sat me down and called their in-house EMT. “There’s a woman here, about forty, pale and feeling faint.”

If I weren’t afraid I might throw up on him, I’d have jumped up and hugged the young cop!

The EMT was very thorough. He insisted on feeding me oxygen. I kept pulling the mask off.

“I don’t need this. I’m feeling better already,” I said.

“You need it,” he said, as he replaced it over my mouth.

“Your blood pressure is low. I think we should call an ambulance and take you to the hospital.” He was a well-meaning angel, but I’d gotten in over my head. I certainly didn’t want to end up in yet another hospital!

“No, no. Just wait a few minutes and take it again. It will go right back up. Maybe I should go sit on the train.”

And in a few minutes, I did, indeed, regain my color and vital signs. Another EMT carried my bag and shepherded me to the next train. He smiled appreciatively when he lifted my rather heavy computer bag. “I’ve never met a woman who wasn’t stronger than she looked.”

Yes… if not for this damn cancer, I’m healthy as a horse!

I wonder, is this what she meant when she said “crash”?