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.

The phone call

I got the call today that I’ve been dreading for a year or more.

My main client called and said he’s been ordered to cut back expenses even further. They’ve had to let people go, and they can no longer afford me. It’s a very sad state of affairs. I really like the gig, I’ve done good work with them, and of course, I need to keep working.

The timing really sucks!

Toothache

Last week sometime I started feeling a strange sensation around one of my teeth. It’s in a part of my mouth that my dentist has been keeping an eye on, since some of the work is pretty old and can potentially break down. The new sensation isn’t exactly pain, not really a toothache, but the gum and lip in front of that tooth are numb. It feels like Novocain wearing off. It’s pretty uncomfortable, and since I don’t have much feeling there, I tend to bite it while I’m eating, making my lip sore and swollen.

I went to the dentist first thing Monday morning so he could fix me up. Only problem, he couldn’t find anything wrong! The tooth in question already has a root canal, and there are no signs of cracks or abscess. My description sounds to him like there’s something impinging on a main nerve, but he couldn’t see anything in the x-rays and didn’t want to just start digging around.

We called my doctor, who’s now puzzling over it too. Can it be from new lesions in my neck or spine? She didn’t see anything on the PET scan that would cause this, but she can’t explain it either. So she’s going to schedule me for an MRI of my head and neck to try to get more information: yet another medical procedure to attend to.

Life is hard

Many of you have contacted me in the last three months since my last blog post. I’ve gotten emails and phone calls asking tentatively if I’m all right.

I appreciate the concern shown by you, my dear friends. I feel guilty for having set up an expectation with this blog and then abruptly abandoning it when life got hard for me. I haven’t wanted to talk about what seems to me to be ugly and sordid. My reputation is sullied in my own eyes, and I haven’t wanted to share that. I don’t feel good about myself. I’ve been depressed.

To set the record straight, my health is good. I struggled with side effects of the immunotherapy through the summer. The itching of early July faded into pancreatitis that lasted about six weeks. Pancreatitis is a bitch. I lost most of my interest in food, and whether I ate or not, I was dogged by bouts of nausea and general queasiness. I lost some weight and was weak and tired. From July through the middle of September, my throat was congested, probably from post-nasal drip. I coughed and cleared my throat constantly for weeks. It disappeared as suddenly as it showed up. By the time it left I felt my energy returning. I started exercising again, tackling paperwork I hadn’t been able to address in a year, and pushing myself to get things done. As I became more productive, my stress over my financial problems subsided a bit. Things were looking up.

And then came today, my latest doctor’s appointment to discuss the PET scan I had on Monday.

It was my first appointment since August. I was happy to see her and started babbling small talk when she entered the office. The look on her face stopped me short.

“What is it?” I asked. “The scan?”

“Yes.” She took time to compose herself.

“How bad?”

“The pulmonary tumors have increased in size and number. The disease has spread. There are new tumors in your liver, possibly your bowel, and your spine.”

“What?! How can that happen?”

“I don’t know. I hate melanoma.” This wasn’t the first time I’d heard her say that. “It’s vicious, aggressive, and unpredictable. When the radiologist called last night and said she had bad news, I had to stop and think who’d been scanned. I knew you were scheduled, but I was completely unprepared for bad news about you. I was so upset, wondering how I was going to tell you, that I couldn’t sleep.”

“I’ve had patients on immunotherapy who looked very good and their scans were good, so we continued the treatment. I’ve had patients who looked very bad and their scans were bad, so we switched them to something else. And I’ve had a very few, like you, who looked very good, but their scans were bad. In those three cases, I took them off immunotherapy immediately and put them on chemo, which is what I’m going to do with you too. In all three cases they achieved complete remission. That’s no guarantee; three is a very small sample. But it’s possible the immunotherapy sets up your immune system to work with the chemotherapy and make it more effective.”

“So the treatment I’m scheduled for today will be chemotherapy, not Ipilimumab?” I asked.

“It’s possible that continuing with Ipi would eventually turn things around by itself, but I don’t want to take that chance.”

“Will I lose my hair? I’ve rather come to enjoy these white curls.”

“You won’t lose your hair. You’ll have three treatments, three weeks apart, then another scan.”

I saw her eyes tearing up. “It’s not your fault,” I said.

She put her arms around me and said. “It’s just that I like you so damn much.”