Going public, as myself

I never stopped to consider whether it would be difficult or easy. As soon as I found out I might have cancer, I knew there would be only one way I might survive it: to write my way through it. It's what I do. What I have always done. Who I am.

When I was younger, decades ago, I think I wrote things in my mind, or in poems. Since word processing came into my life 25 years ago, I've actually written many/most of the things I felt I had to write. Some have been posted or printed and seen by others. Most, not. Nor do they exist any more. I just felt I had to write them then, I HAD to know what I really thought or what I really felt and this is the way I discover that -- often late at night, cigarrette in one hand, cuba libre in the other.  

You know something I never knew until now? If you want to maximize your chances for throat cancer, drink and smoke, especially at the same time. I knew about the smoking. And that the drinking wasn't good for your liver. But that by doing both you could increase your chances of throat cancer by an order of magnitude or more over simply smoking -- that I had no clue.

And I'm writing this for my friend Katie in New York who made my heart soar like an eagle by putting three words on my facebook page. She would probably be the sort of person who in this situation would want to know --indeed, by now would know-- everything there is to be known about this affliction. I am not. 

This blog I started right after I got the news, two weeks ago. At first I was going to post it under a made-up name. Protect my privacy, I said. Think of the kids -- do I want Luke or Carmen reading this?

I created the account, wrote the first posts with preferences set so only I could see them. But I couldn't do it. I don't want to sound melodramatic, but I couldn't write about whether I would live or die --  or rather how I am living now that I know I may be dying -- under another name. I have nothing against people using pseudonyms, even, or perhaps especially, when talking about very personal things. 

But this isn't about ethics and privacy in the internet age's blogosphere, but about what someone who grew up with black and white TV --on both channels-- is doing to try to keep sane while trying to get healthy. 

There is a song from the "Kyle XY" TV show that for some reason I love: she could be you.

She could be you. But not this time. It had to be me. 

Give us a piece of your throat ...

It was Tuesday the 19th,  the day before the biopsy, that Yolanda from the scheduling office called. I was at the salvation army thrift store, a little after 11, had just gotten off work. In 23 hours I'd be showing up to be gassed and carved.

The doctor had had a cancellation. Would I like the first slot for the day? I'd have to be there at 5:30 AM. Checked with my best friend, who is taking me ... agreed.

The thing about my best friend is, we used to be married. As in now divorced. And one of our countless incompatibilities is that she always liked to be early for things. So she picked me up at ten to five, and we were at the hospital at five after, in the waiting room at ten after, and then waited an hour before we got taken back.

By then I had gotten used to the routine. There had been four or five people who had seen me in my pre-op visit on Monday. My name. Date-Of-Birth. Could I describe what were they going to do to me in this procedure? I know it is all part of careful protocols skillfully designed to avoid mistakes, and most of all to prevent performing the wrong procedure on the wrong person. But it still grates. 

You want to say, well if you folks don't know who I am and what I'm doing here, we're in bad shape. Which is, of course, the point. "They" have made it so bureaucratic, baroque and complicated that experience shows sometimes they do have no clue what they are doing to whom. 

So I resisted the temptation to snark, and went through it another half dozen or more times before they knocked me out.

There were two or was it three residents working with my doctor. And the anesthesiologist, the anesthetist, the other anesthesiologist who offered the first a second opinion on whether the conditions that cause my sleep apnea might interfere with intubation, and of course a resident or two working with them. My main "awake" nurse, Bobby, and then the one who would be with me in the OR. 

I can sum up waking up from the procedure with one word: pain. Pain in my throat. I could not speak. Could not swallow. Could breathe -- barely. Why they could not have medicated the area to reduce or eliminate the pain while I was still asleep I don't know. 

I also don't know why they didn't warn me. I also don't know why with all those doctors and nurses around, none of them thought, Hey, since we're tearing out a piece of his throat, he's probably not going to be want to be swallowing very much AFTER the procedure, so let's give him his meds before he wakes up.

Eventually we (my ex and I) decided I was better off out of there. We ... exaggerated ... about my having urinated (one of the things the require to release you) and I went to her house, had a bunch of Ibuprofen, which at that point I could swallow, barely and stayed the night.

The next day my daughter drove me home -- a dividend from the dozens of hours I spent in cars with her when she was learning to drive. 

It is now four days later. The pain is mostly gone. It's just bad first thing in the morning. Then I take Ibuprofen. Whether it goes down naturally as I get up and get my mouth hydrated or the ibuprofen really does help I am not sure.

Tomorrow -- tonight, really, as most people view these things-- I go back to work. I had thought to go talk to the human resources and benefits people. The biopsy confirmed I have a squamous cell carcinoma. But then at a breakfast for my daughter's birthday, who turned 19 yesterday, I was reminded tomorrow is memorial day.

It will have to wait until Tuesday.

Bad news ... and more

It's now the next weekend. It was the 12th when the ENT saw me. He stuck a tube up my nose, stuck fiungers down my throat so far it made me gag, told me he was pretty sure it was cancer, the real question being, how bad?

He will be doing a biopsy next Wednesday. Despite my illusions about this being an extreme emergency, with every day that goes by a chance for the cancer to spread, no one medical treats it that way.

There are biopsies, endoscopies, more CT scans, consultations, tumor boards, treatment plans and don't forget the dentist. When is someone going to get around to killing the cancer that is going to kill me if we don't kill it first?

[So hush now, peace man, the babysitter's here. The best babysitter's here]

I'm going to get drunk now, while I still can.

First Post Waiting for Bad News

 It is now Sunday, May 10. It was Thursday when my doctor told me the results of the CT scan -- I had a suspicious mass on or near my left tonsil, and needed to see a specialist right away. And she mentioned the "C" word.

I had known for weeks the lump was there. She detected it during my annual physical by feeling and poking my neck. Back then it didn't seem so worrying. She sent me for an ultrasound, which proved inconclusive, so a CT scan on Tuesday was the next step.

She only got the results from the radiologist by fax when she was already with me in the examination room two days later. It seemed to me she was trying very hard to keep a poker face as she absorbed the report. That's when I knew this was likely to be very bad.

There is still hope --it seems we humans believe there is always hope, no matter how unsubstantial-- that it could be something else, some weird cyst or something like that. But I just don't believe it.

I spent nearly 40 years smoking, and only quit four months ago when a respiratory infection made it impossible for me to smoke and the Nicotine withdrawal was driving me crazy. I got the patches and was pleased by how well they worked. A few days later I was at my doctor's and she prescribed an anti-depressant that helps control cravings, and have only had a few cigarettes since, and none since February.

The specialists could not see me on Friday, so now it will be tomorrow. I work a graveyard shift, so lucky for me, I won't have to miss work, the life I have known will continue, at least one more day.

I have been very conscious, almost brooding, that this could be my last weekend as a normal human being. I had written my last normal weekend, but went back and struck it, that is not how it feels to me.

What I dread is not being dead, but dying, and perhaps even more than dying, the treatment to keep me alive: the torture of surgery, of chemo, of radiation therapy; not being able to eat; losing my ability to speak; being dependent after having been independent for so long.

I am now in my late 50's; from the age of 18, the second semester in College to be exact, until my mid-40's I never lived alone, not for more than a few months. I was involved in a succession of relationships, the last one lasting 12 years. We had --have-- two children, Carmen who is returning from her first year in College on Friday and I had promised to pick her up at the airport and I don't know if I will be able to, and Luke just finishing his freshman year in high school.

For the first few years after the breakup, the kids always spent two or three nights a week with me. This changed when Carmen entered high school. Yet Luke still came.

Now it seems the pattern is repeating with Luke. My ex's house is much larger and that's their main base. Luke has spent the weekend at my house only three or four times since the beginning of the year, and I was adapting to that, getting ready to dismantle "Carmen's" room and turn it into a small rec/guest room finally, although I had planned for Luke's to stay "his" for the foreseeable future. Except that now there is no foreseeable future.

Perhaps there will be a future I will know something about in a few days, but for now, I find my soul captured perfectly in a few lines from Auden:

Faces along the bar
Cling to their average day:
The lights must never go out,
The music must always play,
All the conventions conspire
To make this fort assume
The furniture of home;
Lest we should see where we are,
Lost in a haunted wood,
Children afraid of the night
Who have never been happy or good.