Tremor and confusion

tremor and confusion


My right hand has been shaking a lot lately. I took some of my student employees out for lunch recently – at a very nice restaurant! – and halfway through the appetizer, the fork flew right out of my right hand. “It’s fine,” I told them. “”See? If we get thrown out of here, it’ll be my fault, not yours.”

I made light of it for their sake, but it keeps happening. It happened twice last week: things just flew out of my right hand.

Naturally, my thoughts take the gloomiest possible courses. Now that I actually have something serious, I think of the most horrible things. . Multiple sclerosis? It usually happens to younger people. Parkinson’s disease? Oh yes: I’m in the age group, and I drool, and I tremble. (One of the other symptoms of Parkinson’s is “confusion,” which sounds very funny, but which is very sobering to me, because I’m far more confused now than I used to be.) Essential tremor? Maybe. It does happen when I’m stressed or tired. But sometimes it happens whenever it wants to happen.

I have a regular non-cancer-related doctor’s appointment in December. I’m sure he’s tired of hearing me whine about all of the things I think I might have, but this he’s gonna hear about.

When I was in the Peace Corps, I had a friend who had MS. She went into tremors occasionally, but she was funny about it. “I’m demyelinating!” she’d yell, and sit and tremble for a while.

Long story short: she got better. Her MS (thank god) got better, as sometimes happens.

What do I have? Possibly nothing.

But probably I need to be tested.

At my advanced age, you never know.


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Hair loss

hair loss


My friends all know about my cancer now, and their reactions have been very diverse. But the most remarkable of all – which I got from two different people, mind you – was: “So will you be losing your hair?”

The first time, it caught me completely off-guard. The second time, I had an answer prepared: “Probably. I can put it in a box and ship it to you, if you’d like to have it.”

Honestly, though, I wonder if I brought it on myself. (The hair loss, not the cancer.) I have bragged more than once about the nice thick hair that Heaven granted me. Only this last spring, two of my (younger) colleagues were commiserating about the fact that they were balding. “I don’t have to worry about that,” I gloated to them. “I don’t have the gene for it. Look at what a nice thick handsome head of hair I have!”

They laughed dutifully, but they were both glowering at me.

And, you see, Karma is now paying me back.

The radiation therapy, being directed very specifically toward the tumor in my throat, will cause only a little hair loss – perhaps part of my beard and some of the hair on the back of my neck.

The chemotherapy, however, will probably take care of the rest. In the words of one website: “You will very likely wake up one morning with all of your hair on your pillow.”

Delightful.

But, as I keep telling people: isn’t that what hats are for?

And, thank goodness, I look charming in hats.


Losing weight and gaining weight

losing weight


Back in 2006 Partner and I went on a weight-loss regime. I went from 215 pounds to about 180 in a year or so; within another year I was 170; a year later, I reached my fighting weight of 160 pounds.

I’d had no idea that I was overweight before; when you gain weight gradually, you see very little change in the mirror from day to day. I look at photos of myself from the early 2000s, however, and I see a stuffed sausage:

Fat photo

After I lost weight, I felt much better. I felt smaller, for one thing. When you lose weight, you literally take up less room than before. Stairs are easier to climb. When you eat, you get full more quickly, and overeating can be positively painful.

I joined a health club in 2008, which also helped me keep my weight down. But my kidney stones began to irk me more and more, and I found that thirty minutes on the treadmill made me ache, and I was dreading it more and more from day to day. So I quit the club in early 2013.

Within a month I’d gained ten pounds.

This doesn’t seem like much, and it didn’t show too much – I didn’t have to buy new clothes – but when you’ve lost 55 pounds, it seems a shame to put any of it back on. So, when a friend told me in June about Mimi Spencer’s “Fast Diet,” I was all ears. It’s very simple: two days a week (mine were Monday and Thursday), you eat only 500 or 600 calories; the other days you eat normally. Most people lose a pound a week. I cheated a bit, but by August I was back down to 163 or so, which was fine with me.

Then, around Labor Day, I discovered that I had cancer.

What a nice time I’d chosen to lose weight!

So now I am on the opposite of the Fast Diet. I am cramming a candy bar down my gullet as I write this. I need to gain weight – as much as possible – before the worst of the treatment begins. Almost everyone loses weight while undergoing chemo and radiation, and if you have a few extra pounds – well, hallelujah.

Pass the butter, please. And the gravy. And the ham. And pour a little olive oil over everything.

I’m fattening up.


Lent and Mardi Gras

lent and mardi gras


When my various treatments begin, I will have to give up a lot of things. I’ll have to give up hot/spicy food when I’m on chemo, because it will upset my stomach. Also caffeinated coffee. Also fatty foods. Most of all I will have to give up alcohol, because it would both irritate my throat (which will be irradiated five days a week) and interfere with some of the medications. One of the Comprehensive Cancer Center people told me the other day: “We’ve tried accommodating people with alcohol, and it just doesn’t work.”

 

 

Good goddamn!

 

 

My friend Joanne said, in response to this: “Pretend it’s Lent.”

 

 

This is excellent advice. Lent is forty days (not counting Sundays), roughly the period of my chemo/radiation therapy. People generally give up silly things for Lent, like chocolate and popcorn. I will be giving up my beloved curries, and hot sauce (which I put on pretty much everything!), and my evening drinks (which calm me tremendously).

 

 

But the treatments haven’t begun yet. I probably won’t start them until mid-October, once my feeding tube has been installed and my dental work is done and my facial swelling has subsided. (When you undergo radiation for throat cancer, they make a mask to hold your head in exactly the right position. If they make the mask before my dental work, or while I’m swollen, the radiation won’t be directed accurately.)

 

 

So I now have approximately three weeks of no rules at all, before the treatments begin. Three weeks of Mardi Gras.

 

 

And what happens during Mardi Gras?

 

 

All hell breaks loose.

 

 

I have had curry three days in a row now. I drink nightly. I’m eating ice cream as I write this.

 

 

When I begin the treatments, I hope they prescribe me a lot of soothing medication, for Partner’s sake and my own.

 

 

Remember what Bette Midler said to Kramer on “Seinfeld,” when she wanted her black-and-white cookie:

 
BETTE: Get me one of those Black and White cookies.

KRAMER: Yeah, all right, yeah…. (hangs up) They don’t have any. But don’t worry I’m going to get you one somewhere.

BETTE: Good. Because if I don’t get a Black and White cookie I’m not going to be very pleasant to be around.

KRAMER: Now that’s impossible.

 

 

O I assure you it’s possible.

 

 

Happy Mardi Gras!


 

Doctor Pearl

doctor pearl


Pearl is Partner’s sister, who lives about forty miles north of us, in a suburb of Boston. She is a very Technicolor person. She is short and pugnacious, and she always lets you know what she thinks about everything. She has occasionally smacked me in the back of the head when she can’t stand listening to my nonsense anymore. “Jesus Christ!” she yelled at partner. “How the hell can you stand to listen to his goddamned babbling all day long?”

Pearl has been very supportive during these early days of my diagnosis and treatment. This summer, when I was first telling her that I had a strange pain in my throat and was having it checked out, her advice was: “Don’t ask for trouble. If you go to a doctor, they’ll just tell you it’s something serious. You probably don’t want to know.”

“But what if it really is something serious?” I said.

“Then you especially don’t want to know,” she said.

She has a point. Not knowing is much more peaceful. Knowing is a little upsetting.

After my diagnosis, however, she became very pragmatic. When I told her I was having a feeding tube put into my midsection, she was very thoughtful. “How big?” she said.

“I don’t know,” I said. “Small, I assume.”

“Big enough to fit a meatball through?” she said hopefully. “Meatballs are good for you.”

“Maybe liquefied,” I said.

I love Pearl. I know that she wants me to get well, which is best of all. And her best medical advice came in the form of a threat: “If you don’t fight this,” she said in her tough Massachusetts voice, “I will come down there to Rhode Island and goddamn kill you.”

And she means it.

So I’d better goddamned well survive.


Slightly better news

slightly better news


Good news, first of all: my PET scan results have come in, and my cancer is confined to the left side of my throat; it hasn’t spread anywhere else in my body. (My hematologist / oncologist was actually giggling with excitement when she told me this. I think I love her.) This means that the radiotherapy can be focused very precisely in the area of the tumor, and I’m not so far along as to be incurable.

It’s barely two  weeks since I learned I have cancer, and I have learned so much!

For example:

  • One of the most effective chemotherapy drugs, cisplatin, is very dangerous for people (like me) with hearing loss. It can make us lose our hearing entirely, or cause lifelong tinnitus. I’ll be taking the milder carboplatin instead. (Imagine having a platinum-based drug infused into your body! I’ll be worth a fortune!)
  • Another, taxol (which I’ll be taking in low doses) causes hair loss and some neuropathy (mostly numbness and tingling) in some patients. I’ll be sure to take pictures of myself during the process, if I become especially shaky and peculiar-looking. You can all have a good laugh.
  • Radiation to the throat makes the whole area sore. I won’t be able to drink for the duration; it will sting too much, and probably also interfere with the various treatments and medications I’ll be taking. Bugger!

But mostly I have learned that this whole thing is ridiculous.

I look over my doctors’ scribbed notes and I see things like “tonsillar cancer.” I have tonsil cancer!

Ridiculous.

Feeding tube? Ridiculous.

No drinking for the duration of the war? Double ridiculous.

I think of Professor Remus Lupin in the “Harry Potter” books – one of my favorite characters – who taught his students to fight off boggarts (which take the shape of your most secret fear) with this spell: “Riddikulus!”

And he was right. Most of our fears are really ridiculous.

If I can just keep repeating that particular spell for the next three months or so, I’ll be just fine.


Bad news, part two

doctor giving bad news


It’s hard, having to tell the same story over and over again. I knew at the outset, when I was diagnosed with cancer (a whole entire week ago!), that I didn’t want to keep it a secret. People (especially people you know and care about) need to know when you’re sick, and they also need to know that cancer isn’t necessarily always a death sentence. (Also, I knew people would gossip, and, since I’m gay, I assumed they’d assume this had something to do with AIDS, and I wanted to give them the correct information, just in case.)

 

 

I understand a little better now, however, why some people keep this kind of information a secret.

 

 

It’s very tiring to tell people every day how you’re doing. It’s also very time-consuming. I appreciate the consideration, but – my goodness! One day is much like the day after. If I was okay yesterday, probably I’m still relatively okay today. If I was miserable yesterday, well, probably you’d be doing yourself a favor not to ask me how I’m doing today.

 

 

And we’ve barely begun this process yet!

 

 

My friend Cathleen suggested a code system: putting up something on my office door that would tell people how I’m feeling. This made me think of these faces:

 

how-are-you-feeling-today

 

 

I may resort to something like this in a month or two, when I’m in treatment and am getting tired and hopeless.

 

 

But for now I can tell you with my own words how I feel.

 

 

I feel okay. I have a little pain in my throat – nothing more than a mild soreness – where the tumor is located. I’m depressed, of course, and I’m trying very hard not to project too far ahead.

 

 

I’ve decided that every day without serious discomfort is a good day.

 

 

So today is a good day.

 

 

Thank Buddha / Allah / Jehovah / whomever you prefer.


 

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