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.

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.

Side effects

Last week my chemotherapy-fuzzied brain confused the dates and I told several people that I was having treatment on Wednesday. It was actually scheduled for today. But when I got into the examining room after my blood work, my doctor told me there’d be no treatment today either; my platelets were too low.

“It’s totally to be expected, a result of the Carboplatin;” which is one of the drugs I got three weeks ago. “You’ll be fine next week,” she said, “so we’ll reschedule you for then.”

We still had a chance to talk about how I’ve been feeling, and frankly, I’ve been feeling pretty lousy.

I’ve had a lot of back pain due to the bone metastases visible on my last scan. There’s also pain in my upper arms and thighs. The pain isn’t terrible by itself, but it’s enough to wake me at least two or three times a night. Whether I get back to sleep right away or not, the interruptions ensure that by morning I don’t feel rested.

I’ve been controlling the pain with pills; initially with Advil, which is pretty good but doesn’t last very long, and then with Naprosyn, which lasts longer but isn’t as effective. She prescribed a 72-hour pain patch that I’ll start using tonight. I should see results in about a day.

Once I’m not dealing with pain all the time, I’ll get better sleep and hopefully have more energy and better appetite. I knew I had lost a few pounds since my first treatment three weeks ago, but was surprised to find that it was a loss of seven pounds, not the two or three I expected.

This back pain, by the way, is a most distressing development. It’s the first time I’ve seen symptoms of disease, rather than simply side effects of harsh drugs. Whenever I become aware of the pain, I’m reminded of its etiology and I get ever more bummed. So maybe the patch will allow me to go longer periods without wondering where this is all headed.

I had a dream

Once in a while I have very vivid dreams that I remember in whole when I wake up.

In some cases the symbolism is very obvious to me, as when my marriage was dissolving and I dreamed I pulled into the driveway of my house to see all my things being sold in a garage sale.

Or when I was a young woman and dreamed I was pedaling a tricycle through the Queens-Midtown Tunnel, pulling a wagon behind me with my parents sitting in it.

But Saturday night I had one of those dreams that seemed to be only fantasy, pure entertainment. In this dream, one of my computer friends invited me to join a group that was looking for a secluded spot to “do some coke.”

“I don’t want cocaine,” I told him, “but maybe someone has a joint.”

(Just for the record, my friends and I do not use cocaine, and I haven’t smoked dope in over thirty years, since it was “fashionable” in the seventies. As I said, fantasy.)

He thought my request was unlikely, but encouraged me to join the party anyway, so we all set off hiking up a mountain. We had a little trouble finding a quiet enough spot, since the mountain was being colonized by Hasidic Jews. There were little cabins and bigger bunkhouses everywhere we looked, and men in black with tall hats and peyes (facial sidelocks) walking around silently.

We finally found an isolated clearing and gathered close to consume the drugs. In short order, police arrived, the group scattered, and some were hauled off to jail.

The next day I ran into the same friend who originally extended the invitation and asked him, “Who got busted?”

“I can’t talk about it now,” he whispered mysteriously, after which I woke up.

That friend in the dream is someone I’ve known since the early ‘90’s, but it’s been nearly two years since I’ve seen or spoken with him at all. Before that we only had sporadic contact for a couple of years, and before that we co-authored a magazine column together for three years. No current contact in two years, but he reads my blog.

The day after the dream was Sunday. Imagine my surprise when I picked up the phone and that very same friend was on the other end of the line!

The reason I’m telling this story is to point out how connected I feel to so many people, even people I don’t see or have contact with in the “real world.” I know many of you who read my blog have been concerned about my most recent dark posts, and before that, a long period of no posts at all. I’ve heard from many of you, via various methods, expressing concern and hope and prayer and good thoughts. I want you to know how much that all means to me!

As I’ve said before, I’m not a religious person; I don’t pray myself. But I encourage all of you who do to keep it up. I accept donations of good thoughts in any form they come. Everyone has their own way of getting it across and I definitely feel touched by it all.

My life is rough right now, but I feel and very much need your support. It invigorates me at a time when chemotherapy is doing its damnedest to sap my energy.

And I love you for it.

MRI

I had the MRI on my head and neck last night. I didn’t know what to hope for: that it would show something to explain the numbness in my jaw, or that it wouldn’t show anything. Either outcome seemed unsettling.

I just heard from my doctor with the results: both scans are fine! She can’t explain the numbness, but it is not tumor in my brain or neck!

I am extremely relieved! I had really blocked off thinking about it, so I was surprised at how intensely relieved I feel hearing this news… or rather, lack of news.

I don’t like not knowing, but in this case knowing could signal imminent disaster.