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….

Aftermath

By the time I got to Grand Central yesterday afternoon after leaving the client, I was Cinderella and my gown was starting to shred. By the time I got home I could barely walk again.

Per doctor’s orders, I increased the dose of my pain patch and got into bed at 7:30. I didn't take an anti-inflammatory before falling asleep, hoping the patch would do it by itself, but I woke during the night in a great deal of pain, so I took a Naproxen then. I was in pain a lot of the night, but managed to sleep until 10:30am when I woke up groggy and still in some pain after more than fourteen hours sleep!

My doctor says I probably overdid it.

The doctor’s admin just called to let me know she’d gotten the next scan approved and scheduled for tomorrow afternoon. She’s the greatest at getting things done!

So it’s been another lost day: naps, pain, lack of focus. I hope we can get to the bottom of this soon.

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!

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.

Chemo sucks

I had my second chemotherapy infusion on Tuesday. As always, I got an intravenous dose of steroids before the DTIC (Dacarbazine) and Carboplatin. The steroids keep me jazzed for about a day and a half, which is a good thing in this case, since I had to be onsite at a client in downtown Manhattan the next day.

Unfortunately, after the high comes a crash, along with flu-like symptoms, so once I got back from the city on Wednesday, I’ve done little more than sleep: 5:30 pm to 8:30 am, then a nap from 11 am to 3 pm. And, hard to believe, I’m ready for more sleep now.

The Fentanyl pain patch seems to be helping. My doctor initially prescribed a very low dose, so as not to make me stupid from grogginess. This time she increased it to handle the back pain more effectively. I’m sleeping better.

I asked my doctor what are the chances I’ll come back in three weeks and have low platelets again. “Not likely,” she said, since she reduced my chemo dosages significantly this time. For the first infusion she wanted to hit the new disease hard, so she gave me the maximum amount. It made for a rough month, including the anemia. This treatment should be a bit more tolerable.

We talked about my nearly complete lack of energy; climbing a flight of stairs or walking at my normal pace leaves me winded, for example. She recommended American Ginseng. Her other patients have reported good results in combating that chemo fatigue, so I’ve started taking that.

Before I left the examination room for the treatment floor, she reviewed my blood work lab report and was pleased with what she saw. One count in particular was down from 150 to 130; normal is 90. I don’t remember the component name, but it’s a measure of bone disease.

Feeling fine

My last blog entry painted a pretty awful picture. Yes, it was unpleasant and yes, it was scary. But that was Monday and this is today. I want to share that tonight I’m feeling really good.

A friend called tonight at 10:30, thinking it was 9:30. After a half hour, he was yawning and falling asleep on the phone. I, on the other hand, felt jazzed and energized; this after spending the day at a client site in the City; and this in contrast to feeling exhausted most nights before 10 o’clock for the past four months.

Feeling this good after being off chemo drugs for three and a half weeks gives me hope that once the whole experience is over I’ll get my energy and spirit back fulltime. It’s a small glimpse of the big picture.

R & R

I started my second week without chemotherapy drugs today. I’m still tired so much of the time. It feels like a cliché to keep saying it, but it’s what I’m living with. I need to pace myself, even during this period of recuperation between cycles.

Last week I pushed myself a little too far and ended up spiking fevers three days in a row. I never felt sick enough to call it “flu”, but my joints ached. Chills accompanied the fevers and sapped my energy even more.

This weekend I visited relatives in Pennsylvania. I drove home this morning in time to catch a train into the City to have blood drawn. By the time I returned home, I was due a nap, and slept for three hours.

It was my first time in the Cancer Center in two weeks. I can’t believe how much I missed the place! I wasn’t scheduled to see anyone besides the lab technician, but the nurse who oversees my participation in the clinical trial saw me and stopped into the phlebotomist’s office to administer a hug and check up on me. My doctor also stopped by. These women have become family. My doctor said she dreamed about me. She couldn’t remember the details, but she woke up thinking she had to tell me I’d shown up in her sleep. That fits with the feeling I’ve had for years of a very primal connection with this woman.

It’s actually been three weeks since I saw my doctor. The last time I was there she was on her way to Barcelona to deliver a talk about the Genasense drug and the workings of this clinical trial. Months ago, when she was evaluating me for participation, she said she hoped to make me a “poster child.” I didn’t know at the time, but that conference was what she had in mind. My treatment went even better than anticipated, so she was able to wow the crowd with slides of my before and after scans, the pictures taken before and after my first treatment cycle. It's all so much mind-boggling technology, and I'm proud to be part of it.

End of Round Two

Last night I took my last chemotherapy pills of the second treatment cycle. On October 14th I’ll get another full body PET scan to evaluate the effectiveness of this cycle, the progress made since the last scan in August. I’m already scheduled for a third treatment cycle.

I don’t have the same anxiety I had before that last scan. I’ve got good reason to expect more good news. The tumors were no longer metabolically active at that time. I anticipate that whatever is left of them is being consumed and discarded by my body, kind of like the old electronic arcade game, Pacman. In my mind’s eye, I see a little cartoon head traveling through my lungs, scooping up and munching cancer cells.

For the past week or so my side effects have been minimal. The one distressing thing I’ve come to expect is continual tiredness. My energy is limited, and when it’s used up, I ache through my whole body. My bones feel limp. It’s as if the energy has been completely sucked out of me. I frequently wake up tired after eight or more hours of sleep.

I was fairly active this past weekend. Saturday, my daughter and I attended a consumer electronics show at the Javits Convention Center. After that we walked around Manhattan some, and ended up at the Farmers Market in Union Square. Sunday, I went to a local art show with a friend and walked around the outdoor fair for a couple of hours. Today I paid for all that activity with bone-weary tiredness.

I hope the next three weeks of rest from medication will provide reprieve from some of the tiredness too. I need to rest up for the next go round starting October 22nd.