September ended in December, and now it's February

[This was written two ... no, three years ago, actually a little more. I was tempted to, and tried to update it, but could not remember what it felt like to be me back then. I am older, now, though I doubt any wiser, and I wonder why what Dylan recorded three days after I turned 13 still says something to me three days before I'm closer to 63 than  62.]

https://www.youtube.com/watch?v=w95sbCUBG54&feature=youtu.be&t=24m38s

There was a very strange thing in the last post, though I doubt anyone noticed. It was my saying, at the very end, that I still had to figure out who I wanted to be when I grew up. Strange for someone on the cusp of entering their sixth decade, but there is a back story.

In the post, I talk about my returning to my workplace for the first time after cancer treatment on September 11, 2009, the day my friend Chris was saying goodbye to make way for new people at the head of the network. And I talk about how desperately I wanted to get back to my (old) life, once treatment was over and its effects began to subside. And how that all got tied up emotionally for me with Green Day's song, "Wake me up when September ends," even though Billie Joe Armstrong's September had been at the beginning of the 1980's, and mine at the end of the first decade of the 21st Century.

And in the post four months ago, I say that I had wanted to go back to my pre-cancer life, but could not, but don't say why.

The implication is pretty clear that the reason is simply that the experience had changed me so much that there was no going back to the old me. True enough, but ... there was an added dimension.

CNN's Spanish language services, which had been my professional home for more than two decades, were being transformed, to abandon what was considered a repetitious, breaking news-oriented format towards one that placed the greater emphasis on talking with guests instead of repeating reports from professional journalists, and sought to branch out from the narrow politics-and-business concept of "news," with a bit of science/technology/medical news to evoke the "gee whiz" factor and garnished with sports, weather, and this weekend's movies. The most heavily promoted shows of the relaunched network being a nightly interview show in the style of what Larry King had been doing for nearly half a century, a relatively safe, non-confrontational space for politicians and other celebrities to promote their wares or present their case; a daily mid-morning women's "news" show; and a daily hour-long "entertainment" (in reality, gossip) show.

Honestly, there's two --or perhaps three-- people I can be. The hard nosed and cynical reporter, a doubting Thomas who wants to put his fingers in the holes. The acerbic commentator. Or the old activist, driven by love and rage and the conviction that one day there will be a better world -- or none.

Those three people, in turn, can staff any number of positions --and have-- in  media and communications. Writer, editor, interpreter, translator, announcer, analyst, producer, manager and so on. But the one thing they could not be is purveyors of  "be scared ... be very scared" crime/terrorism propaganda ensconced in happy talk. Opposites though they may appear, their social function is essentially the same -- to distract people, draw attention  away from the individual and collective problems, the challenges and opportunities they face in everyday life.

Happily, I was spared the choice between being true to myself and abandoning a secure job and salary. I was the most senior employee in the newsroom, having been there for 20 years. And I had two decades of journalist experience before that, going back to when the president was Nixon and the scandal du jour was Watergate.

Not much call for that if the aim is never to come close to twitter's 140-character limit or make someone in the audience feel you know more than they do just because you were there and did put your fingers in the holes. Especially if the employer put a premium on knowledge and experience, which CNN does, or did, and paid accordingly.

So after "abolishing" my position, and "inviting" me to apply for the same sort of job, the most junior guy in the new "management" told the most senior guy on the staff that he had not been chosen. I came out of the session with mixed feelings, but mostly thankful that I hadn't been the one to get 30 pieces of silver out of the deal.

It will be a long time before this post sees the light of day. I got the best severance package of anyone at CNN en Español because I'd been there the longest, but it was on condition --among others-- that I don't say anything bad about them. Once the package runs out, I'll try to remember to post this.

[Well, remember I finally did.]

One day more

[This is from March, three or four months ago. I'm fine; it was just a scare due to having talked myself into believing I had a recurrence or new primary].

For weeks my unease has been growing. I've not been feeling well Queasiness has blossomed into nausea, listlessness into drop-dead fatigue, momentary wobbles into falling down with drunken dizziness even though I haven't had a drop.

"In a real dark night of the soul," F. Scott Fitzgerald wrote, "it is always three o'clock in the morning, day after day."  But it is worse when it is actually three AM. As it is right now.

Thursday a week ago I went to the Emory University Winship Cancer Center for one more regular screening: They drew blood ("labs"). They did a neck and chest CT scan. It always makes me nervous. Monday morning early their phone call woke me up. Could I come in so they could draw more blood?

"Sure," I said. "Let me get to my calendar."

"Oh that won't be necessary, sir." They wanted me down there three mornings in a row, as early in the morning as possible. Starting that day. Or if that wasn't possible, the following one.

So I went from nervous to frankly worried. But when I pulled into the valet parking at Emory on the second morning, panic hit. There was something about being there two days in a row: suddenly I felt I was back 4 years ago, in my lost summer of 2009.

Lost, not because I regret what it took to get me cured --I guess I should say, "cured for a time"-- but because I remember so little, except the dementia at the end. The worries. The desperation. Waking up and it was three o'clock in the morning, and I'd only had two hours sleep. Like tonight.

Well, not quite. Tonight there's been no sleep. At all.

Yesterday afternoon I'd  almost had a heart attack. At about 5:30 I answered the phone, and it was the  Emory Clinic Department of Otolaryngology. "You have an appointment with Dr. Wadsworth on July 3, but we have to see you before then," she said, and in an instant my heart rate shot up, I could hear the blood rushing in my ears and did not hear what else she said. Dr. Wadsworth had diagnosed the cancer initially. This was it. Relapse or a new primary?

I asked her to repeat what she was saying. "Dr. Wadsworth will not be in that day, so we'd like to move your appointment to the week before, or later in the month," she said, as I tried top stop myself from hyperventilating. I felt dizzy. I told myself I was going to pass out. The moment passed.

It's not one day anymore. Hours.


.

After: Wake me up when September ends

An old friend contacted me through facebook after 40 years and rather than tell her about my cancer last year I pointed her to this blog. And so I realized that perhaps I should bring it up to date.

As I was going into treatment, I promised, and intended, to "write my way" through it. I did not, and there is a reason for it: I could not.

I know the doctors told me beforehand it would impact me psychologically. And they even have a staff shrink at the Emory cancer clinic where I was treated and social workers as part of the treatment package. But I did not have a clue. I mean not even a hint of a shadow of a clue about how this would affect me psychologically.

For the first week or so of treatment I saw lots of things I was going to write about. I even remember thinking of what I was going to say in a post about the political sociology of chemotherapy. And then the treatment hit.

They call it "chemo brain" and that's part of it. But the other part is something I didn't know. The human brain typically uses 25% of a person's caloric intake. And that intake should be at least 2000 calories a day. But even before I lost my capacity to eat, I completely lost my appetite.

After the first week or two of treatment, there may have been one or another day when I got 1,000 calories. But not very often. Even with a pump to push stuff down the feeding tube, the best I ever did was four "Ensures." There may have been a day when I did five, but much more common I think was my intake being three.

I was 25o pounds in June, and 170 by September.

As the treatment progressed, I became less and less functional, to the point where I simply could not even keep track of what medicines I'd taken.

I don't know what I did to deserve this, but my ex took me in for a couple of months, and with the help of our children, kept me taking medicines and bottles of those Ensure shakes. My friend Paul --who fought his own cancer battle a decade ago-- came to see me every day or two to keep me sane.

The people at CNN en Español were incredible -- one beautiful lady organized transportation for me with different colleagues taking me for treatment or just to go to the store. But it wasn't just helping me with the practicalities, but reminding me every day that once I was out of this tunnel, I had something to do, somewhere to go.

Because I was really in bad shape. It is all a haze now, but I remember desperately seeking appointments with the psychiatrist because I though I was going crazy. I couldn't sleep more than three hours a night. My mind was racing with all kinds of worries. The million things all these people did for me I don't remember and I feel like an ingrate because they saved my life, and I can't thank each one for every kindness because I don't remember.

I had gone into treatment strong, optimistic, but also at peace with the thought of dying. Because of something Sal said I researched online the 5-year survival rates for head and neck cancers and it was something like 15 or 20 percent. I came out of treatment cured of the cancer (last week I had another exam and a couple of months ago a scan -- still all clear) but not cured of the treatment and its side effects.

My treatment ended at the beginning of August. But for 2-3 weeks afterwards you keep spiraling down, as the effects of the chemo intensify. And of course my throat was completely swollen, shut down from the radiation. For a time I couldn't even speak.

That's when I fell in love with Billie Joe Armstrong's "Wake me up when September ends." That was my goal. I desperately wanted my life back ... and was determined that my lost summer would not extend into fall.

"Ring out the bells again, as we did when spring began." Because that spring, until I was diagnosed, I felt better than I had in many years. I had quit smoking, and the pills my doctor prescribed to help control the cravings are also an anti-depressant, which I think I needed.

At the end of August or beginning of September, more or less, I was able to begin swallowing again. My intake of Ensures shot up, and within a few days I started eating. Everything tasted like cardboard, but the least unpalatable were scrambled eggs and bacon. I suddenly started to feel half human as I was no longer starving and the side effects of the chemo and radiation began to subside.

I started driving again, and my first real real drive was on Friday, September 11. September 11, 2009. Last decade. Not this year.

My friend Chris, who had been head of CNN en Español for several years, had been asked to step aside to make way for a new leadership for the network. I desperately wanted to be there for him when he said goodbye to the staff, a group that, in our Latino way, was --is-- a family, as their support for me had proven once again.

It did not occur to me --sometimes I'm absolutely hopeless about taking delivery when the cluetrain comes-- that involved as so many had been in helping me through the cancer ordeal, my presence would change the event. And I'd made the decision to drive down there on the spur of the moment, what I'd arranged was to listen in on a speakerphone.

So I was not just embarrassed, I was mortified when I was greeted with applause and even a cheer or two. Sure, here's the idiot that started smoking during the Kent State massacre national student strike in May 1970 and didn't bother to stop until January of 2009, and he is being hailed for apparently dodging the bullet that he'd been told --for decades-- could well be heading his way.

At any rate, Chris said he appreciated the gesture, when the truth is, I think, I did it just as much or more for me, desperately trying to go back to what I had mistaken for my life.

I did, I think, imagine for a while that I'd "gone back" to my life. But there is no going back. A year ago I woke up from the fog of treatment when September ended, and went back to work, and now that another September has ended, I realize I never went back.

Because I still have to figure out who I want to be when I grow up.

If I live that long.

The Quickening

There is a moment in a certain type of story where various seemingly or actually unrelated strands start to come together. Soon it becomes clear they are revolving around a common center of gravity, and as the orbits become faster and tighter, they press towards a singular, inescapable outcome.

The name I give to such a moment is "the quickening," though this usage has little or nothing to do with the Highlander movie or TV series from two decades ago that I have borrowed the word from. But the word is right -- the pace accelerates, events concatenate, little springs and brooks combine into streams that then surge into a mighty river.

And it may even right from that older meaning of "the quickening" that gave us the expression, "the quick and the dead." One life --or a path in a life already started-- becomes viable; others branch off, are quickly lost from sight, and fade into nothingness.

That has been my life for the last three weeks. Once the cancer diagnosis had been confirmed, it became a mad dash --or perhaps military campaign-- to get to The Treatment. The confirmation via biopsy was the beginning of The Quickening.

The Quickening itself involved dentists; dental surgeons; three kinds of oncologists with their respective administrative and support personnel (technicians, nurses, doctoral students, already doctor residents and Physicians Assistants); a kind of surgeon known as something like an interventionist radiologist and their Operating Room team and their awesome Jamaican music soundtrack; nutritionists, speech therapists, social workers, pharmacists, psychiatrists and parking attendants [of course! How easily we forget the most basic things!].

Leaving completely aside for now my work [as in "employment"], disability and medical payments side of things.

But since the end of May, every day or two has been loaded with either a biopsy, CT scan, PET scan, tooth fillings, molar extractions, doctor's exam or getting ready for the one on the next day.
That's why I haven't written.

There's been all that, and, Oh Yeah, my daughter's non-custodial parents financial statement for her financial aid next year because her 1500+ SAT dad (1500 plus when the max was 1600) saw that it said "College Board" at the top of the page and could not find an address and sent it there. Instead of her college. And then tried to figure out how to explain to Carmen's college that everything on the form was absolutely true, even if many weeks late, but nothing on there was now particularly relevant, as I had been diagnosed with cancer.

So it is not surprising that what I had to do three days ago didn't stand out: just go to the hospital Thursday afternoon and get a tube stuck into your stomach through which to pour nutrients and water in case (almost guaranteed) the radiation therapy makes your throat so sore you won't really be able to get a life-sustaining ration down your gullet the old-fashioned way three or four weeks from now.

Wednesday, the day before I got the Tube, I had been in the underground, not the political "weather undeground" of my youth but the physical T for Tumor underground. They call it the "T for Tunnel" level at the facility where I am being treated but that's just dissembling.

That's where they zap you with radiation. They've put all the heavy-duty medical radiology equiment underground because that's the cheapest way of shielding it. The "tunnel level" isn't particularly a passageway to anywhere, as the word "tunnel" might be taken to imply, save an early grave if the treatment fails or the rest of your life if it doesn't, but that usage --"tunnel" is mostly metaphorical and if there's one thing that us cancer people no longer have time for, it is metaphor.

"Cancer people." The words just came out, without even thinking about it. But that is what this post is about. Becoming a "cancer person."

Wednesday afternoon after work they put a plastic mesh on my face that quickly hardened to become a skin-molded mask. To do it I had to shave. Completely. For the first time in 20-some years, no beard. But they want to make sure I glow in the dark in only the right places.

And, you know, I'd used the journalistic gallows-humor phrase --"glow in the dark"-- so much the last few weeks that I didn't even think about it when I used it with Carmen. Except Carmen isn't someone at CNN en Español where I work; she is my daughter, and, it seems, quite resents daddy's journalistic gallows humor. She asked her mom, who just happens to have spent most of her life --or as close to as makes no difference-- as a pediatric oncology nurse. Who dutifully told Carmen daddy was just trying to be funny. Radiation therapy doesn't REALLY cause people to glow in the dark. Not that Carmen REALLY believed me for a second. Like I said, she IS my daughter. Has been her entire life.

So on Thursday I had Carmen come to my house to pick me up to drive me to the hospital --"payback" I joked, for all the hours I'd spent with her when she was learning to drive-- and then played a trick on her, surprising her with my shaved me, a person she's never seen before over her 19 years and a couple of weeks of life.

And it was surreal, for as she came around a corner and up the steps in my house to see me, I saw her, but not as she is but as she was a little more than 19 years ago, as she was being born a little after 3PM in the afternoon of that Wednesday in May 1990. And the look my 19-year-old daughter had on her face for just an instant, a flash, was the first look she ever gave me --I swear to God.

It was this half outraged, half bemused "WTF?" look, the same one she had on now. The same one she has on, not most of the time, but at least most of the time when the look on her face expresses some clear meaning. The "Carmen" look.

My friend Sal has the pictures --we were just looking at them today-- showing that I let my beard grow out in our last months in Nicaragua, during the waning days of the Sandinista Revolution. So, for sure, Carmen had never seen THIS me, beardless.

So that was Thursday pre-hospital.

Late Thursday was a smaller thing, just a little plastic bypass into my stomach and the rest of my alimentary canal in case my throat wasn't working. Like if my neck --but not the rest of me-- had been magically transported to Hiroshima on August 6, 1945.

But now I find I'm no longer the person I had been say, on Monday.

Tuesday after work (remember, I work 2AM-10:30AM) I got an almost miltary-style haircut and a beard shave. Except the barber didn't shave it, she just did it as close as naked clippers could make it. It looked like I hadn't shaved for a day or two, that's all, except for that pasty tone skin acquires after being permanently buried under a beard for decades.

Wednesday morning at work I was joking with my compañeros that I'd gotten home from the barbers, gone to the bathroom and almost called 9-1-1, seeing some complete stranger looking back at me from the mirror. But that then I hesitated upon realizing the stranger looked amazingly like my brother.

It was me, of course, which everyone immediately realized except Sal (my best friend) when I told her later. She thought it might really BE my brother who had somehow come to Atlanta, snuck into my house, secreted himself inside a bathroom and was there to surprise me. I'm being unfair, since, as I was telling the story, I really didn't give her time to concentrate on details like someone getting into my house or into my bathrrom. But if you want to know what Sal is like, that is probably the best description of her I could give. She is the person who would totally believe that I came home to find my brother there, because that is EXACTLY what she would do for her brother or sister. Or for our kids. Or for me, though we haven't lived together for more than a decade. Or --I hope-- what I would do for her. Because she deserves so much more.

Of course, if I AM to look like one of my brothers, I would want it to be my distinguished, even somewhat patrician older brother, Gustav0, the poet who is the David Feinson Professor of the Humanities at Columbia University, and has a dozen or so sch0larly and literary books on his CV -- including a journal from his own cancer battle now almost a decade ago.

But --needless to say-- I look instead like the spitting image of my younger brother. Whom I will not further characterize out of deference to family privacy.

So Thursday they poked a plastic tube into my stomach. And with that alteration I think I have crossed a frontier. I no longer *feel* like a regular person. I n ow beklong to the species cancer people.

"You assignment, Mr. Phelps" I can almost hear the Mission Impossible tape saying, "is to stop being a cancer person and instead become a regular human being once again." As if it were that easy.

* * *

If you happened to read this post Saturday night, there was even more to it then. Took it out, decided this was already way overloaded, and that other stuff can wait. But sooner or later it will be back.

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.