Part III, Chapter 2: Face Facts
Sent: December 27, 2006
Subj: Face facts
Well. I have been a bit remiss in not keeping you all up to date. Iím going to write that up to chemo brain (my excuse for any and all failings from now onómore on that later). Life continues to be eventful. Many of you have received my parentsí holiday card. It reads like a Russian novel or a maudlin country song: ďThis crappy thing happened, that crappy thing happened, and then the dog died. . .Ē All true, and Iíll fill you in on some of it, but letís start with the happy aspects of 2006 and then fill in whatís left:
1. I am alive.
2. Other than the dog, there have been no premature deaths in my immediate family.
3. During his entire lifetime, the dog did not cause a single premature death (for this dog, quite an accomplishment).
Other than a couple of moments during the summer, life has just hasnít been as exciting since I stopped treatments. The thrill was gone. Until now.
Some of you may remember the large hole that opened under my eye a few months ago. I was content to cover it up and hope it healed, but that spoil-sport Dr. Mehrara insists that it needs closing. The big exposed chunk of bone is drying outóapparently a bad thing. So itís back to the big city for a couple of weeks in February. Iíve had more surgery on my face than Michael Jackson and Nicole Kidman combined!
The Fixer will take a patch of skin from my arm or neck and cover the hole, and then heíll take a piece of thigh or abdominal muscle to fill the hollow in back. I thought it would be funny if he took a piece of a**, but it would probably give me a whole new level of bad breath.
Iíve had some good times with that gaping hole in my face. For instance, one day, I forgot to put on my Band-Aid before going to work. I didnít realize it until I was driving home. No one said anything all day, and I hoped against reason that no one had noticed. The next day I asked the other doctors. Of course they noticed. They just figured I was trying a new look. What had the patients thought? If only someone had said something! Think of the opportunity for wise-cracksóďOh, that? I just cut myself shaving this morning.Ē
Oh well, Iíll just put my best face on the situation.
ĎTil next crisis,
Sent: February 11, 2007
Subj: Tom's doing OK
Sent: February 13, 2007
Subj: Through the nose
As K informed you, I made it through the surgery. It was a little more hard core than I expected, (I was deceiving myself) but the situation is not particularly dire. Apparently, my brain made it through intact, and I suspect everything else will heal.* [Digression: Just as I was writing this, a nurse came in and gave me a present! It's lovely new red rubber bracelet that says 'fall precautions' on it. I get to keep it. A little early for Valentine's Day, but nice. Only thing, though; it's winter. Aren't 'fall precautions' passe'?] Anyway, I find the tracheostomy and the nasogastric tube (NGT) coming out of my nose most annoying, and it makes me look a bit like a puffy, unshaven elephant. They only feed me through the NGT. I never imagined I would ever want a bag of cafe' au lait-colored gook served nasally, but when you're hungry, anything will do. Meanwhile, talking is tough with the tracheostomy (a major problem given my proclivities), and yodelling is right out.
My friend Jason came by and composed this lovely portrait of me with my nasogastric tube.
However, it could be a lot worse. I'll get out by Monday presumably looking like myself and in reasonable shape. With luck, no treatments to deal with. I took my first walk around the halls today, and this 80-something-year-old guy who had had his entire jaw removed lapped me three times. He couldn't smile, but he could give me the thumbs up. Now that's my hero.
*Lost, but little mourned is that big hole under my eye. Never did succeed in making money with it. On the other hand, Iíve got a great idea for a curare dart gun for the trach. Better make it before that heals.
Feb. 13, about 5pm. Two surgical fellows dropped by and unceremoniously jammed a 'nasal trumpet' into my right nostril. Fun. Much fun. Not as musical as you might think.
Subject: The Parable of the Speedy, Jolly, Jawless Gentleman
This hospitalization has been a trip from hell to halfway to summer camp in a mere week. The immediate aftermath of the surgery was awful, but recovery was unexpectedly swift. By bedtime last night, all of my tubes had been pulled out except for the nasal trumpet. (They tell me that this 4 inch long plastic tube should stay in for a month. It preserves the nostril as the long strip of leg muscle* furled like a fruit roll-up and sewn into my right cheek makes itself at home.
I felt ready to move on. The shallow, hip-to-knee wound at the source of the graft gave me little trouble if I moved carefully. I was the fastest moving patient on the whole Head and Neck Unit except for my hero, the speedy, jolly, jawless gentlemen (see previous update). I flagged him down during his 5-6 mile jaunt around the ward. I told him he was my hero, and we gave each other a quick bow before I left. How many people are there in the world who could laugh without a lower jaw?
The first sign that today would be an educational day came when we started down to the lobby with my baggage of clothes, food, and free wound care supplies. K sagely pointed out that I was to sit in a wheel chair and not carry anything that would not fit in my lap. Okay. Fine. She called Amtrak to notify them that a guy in a wheelchair was on the way and going to need help. A delightful Syrian Christian-right cabbie drove us across town to Pennsylvania Station as we had a pleasant, vacuous political conversation with him.
I maneuvered out of the cab. Using my cane, I made my way with K across the wide, icy sidewalk in front of the unoccupied handicapped booth. There, we met an annoyed couple who told us they had been pressing the intercom button on the outside of the empty booth for twenty minutes. We carefully moved on to the regular entrance at the top of the escalator. The handicapped elevator had a yellow maintenance tape across it. Having done fabulously well with my physical therapist on the hospital stairs, I confidently limped onto the escalator. I made it all the way to the bottom without falling off, because some nice guy caught me.
At the foot of the elevator, we were relieved to find a helpful redcap (Amtrak porter) there who, when asked how we could get a wheelchair, pointed us towards a long, angry line at the information booth. Instead, K and I trekked to the Acela waiting lounge. She went off to find a redcap more familiar with wheelchairs and such. I camped out with the luggage and fumed. Travelers would rush over to the row of empty seats in front of me. They would turn around to sit down and see my face and promptly look for somewhere else to sit.
I had not shaved in a week, and my right cheek was swollen like a baseball. Gauze pads and tape adorned my glasses to prevent pressure on my delicate facial graft. To these were also attached a rolled up surgical mask holding to my left nostril a stack of frequently replaced gauzes to catch discharge and to my right nostril the end of the nasal trumpet so as to prevent it from sliding out and becoming a nasal trombone. A smattering of dried blood, scars, and the greasy yellow bandage on the graft itself completed my face. Another large, stitched wound sat on the right side of my neck, and at base, there sat a bandage covering the healing tracheotomy hole. Whenever I breathed hard or even made certain body moves, it trumpeted like a pigmy elephant or flatulated.
A middle-aged woman with a fur coat sat down as a red cap plopped her baggage in front of me. She saw me, and her face pinched. She pulled out a book and scowled at it. A woman four empty seats to my left made furtive glances.
Then it struck me. I could either grit my teeth for weeks about Amtrak and those rude travelers, or I could dig in to the satiric feast I had been offered. Contented, I sat back with my clip-on sunglass lenses and enjoyed the show.
I was almost disappointed when K appeared with a redcap and a wheelchair. We made our way through the crowded holiday weekend station. Kids gawked. Grown-ups looked away awkwardly. I half-regretted splurging for first class tickets to get privacy.
The train ride was uneventful. At the 128 station, we exited the train and found ourselves at the far end of the platform. Lakes of ice dotted with ineffectual islands of salt stretched between us and the station. I carefully crept along with my cane, giggling exaltedly. K dragged the luggage.
Finally, as K swung our Civic around to pick me up, a big orange SUV squeaked in around her, blocking the handicapped ramp. The young driver picked up a passenger, stopped the ignition, got out and crisply ran into the station.
What a day!
Next time, we drive. Who cares about global warming anyway?
The day was an epiphany--a field trip to the strange worlds of the physically disabled and the facially maimed. In a couple of months, I will probably be as good as new and with a face free of that large hole and unprotected dead bone that begged for infection. But the day made me feel viscerally what before I had only understood intellectually. I can laugh at the experience, but I will also send an account of my day to the board of Amtrak and its chairman with a CC to an advocacy organization for the disabled. And next time I see one of the long-term residents of this odd parallel world, I hope I can catch them if they fall on an escalator. I hope I make eye contact and smile, and I hope I never forget the dignity and poise of my hero, the speedy, jolly, jawless gentleman.
* I wonder what my muscle cells are thinking right now? Maybe: ďWow, that was a close one! I thought the neighborhood was gonna be ruined. Wait a minute. This feels like home, but itís different. Hmm. Nice blood supply!
Sent: February 18, 2007
Subject: All things pass. . .
. . .like a kidney stone.
I'm home! I move like old man, look like a boxer, and sleep almost as much as George W. Bush, but I'm OK, and this will all pass.
Many have my gratitude, but I'll use this update to thank my doctors, Cousin Niki, and especially Aunt Ickey, who daily traveled down the length of Manhattan with a stress fracture just to tend me and keep me company. By Thursday, I could walk faster than she could. Of course, thanks to my wife. She continues to play every role from confidante to advocate to wound nurse. I would not have put it on my Match.com page, but a high gross-out threshold turns out to be a premium spousal quality!
. . .and, apropos of nothing:
On AOL, I just saw a story and a thread of e-mails about Susan Patron's children's book, "The Higher power of Lucky." It has the word 'scrotum.' Parents are outraged, and school libraries are banning it.
Shocking! Shocking! Children should never learn scientific, nonexpletive terms for any body parts that might make them giggle. For instance, my child laughed up-roariously about the word 'eye' for weeks. I don't know why, but I certainly regret teaching him that word. Imagine if the child had a serious injury down there! I certainly wouldn't want my boy to be able to tell me about it in public without baring his private parts. Oh, those liberals. What will they think of next?
Sorry. It was just such a low hanging fruit.
Subj: Unfunny Musings
Paul and Helen
Many people have commented to me that I have bad luck and ask me how I havenít been ground down by all that has happened. I have been through rough stuff, but I have seen many patients and others going through much worse. Fate has thus far given me problems I can overcome and left me relatively unscarred. This was driven home to me again today.
I found out that a guy that I had not thought about in years is suffering a horrendous tragedy. Paul and Helen were my college classmates. Paul and I knew each other. Although I did not know him well, he was a friend and an admirable person. He was creative, kind and gentle with a fierce commitment to making the world a better place. From what I gather, these have not changed. He married Helen, and it sounds like she was a similar type, and they had a two-year-old son. On January 4, this year, a man invaded their house, killed Helen and shot Paul in his hand, his arm and in his cheek as Paul huddled over their child. I gather that Paul is recovering from his wounds, but he is devastated, and his childís life is irrevocably changed.
On January 3, he was luckier than I. He was a doctor with a little boy and a loving wifeóvery much like I am in those details, but without the cancers and their aftermath. Then, a day later, in an instant, his fate became a thousand times worse than mine. And in hospitals and wars and streets, there are many more whose tribulations outrank my own. So I will shed a tear for Paul and Helen and their son, and I will consider myself lucky (so far).
Sent/Uploaded: Friday, March 18, 2007
Sorry to go so long between updates. Everything is returning to normal (pre-op normal, that is). My face is no longer frightening small children (which is good and bad, really) and actually looks a lot like it used to before all the fun started. A very odd scar will remain, but as I long ago gave up any hope of a modeling career, I don't think it really matters. I am off the cane and I'm chasing LLC around the house again. Below is a recent e-mail exchange between me and my plastic surgeon (That sounds so Hollywood!), the Fixer. It captures something unusual in the relationship I have with my doctors.
Subject: Tumoriffic Ho-Hum
Well, here's what passes for drama these days. I found a lump on my jaw, and everyone got all excited. After some frantic e-mails and a doctorís visit, it turned out to be a surgical clip that was meant to be there. A relief, but doesnít make a great story.
Also, I did get an infection at the graft site under my eye. Itís slowly improving on antibiotics. Meanwhile, my mother was so hungry for something worth reporting, that she actually sent an e-mail out to her friends and family describing the pus drainage. Boooooring!
I did have a cavity filled. Weep for me.
But there's a little more:
Part III, Chapter 3.
All comments, suggestions, compliments, insults, and hate-mail should be directed to Tom@tumoriffic.org.