Sunday, April 11, 2010

the Medical Mystery Tour is hoping to take you away

from excessive wondering or worrying about a certain blonde wannaBeatle during his extensively arranged time off, in hospital and at home.

the backstory: I've had a slow growing mass in my neck since oh 1985 or so, which stayed about the size of a dime for ten years, and was completely asymptomatic. all medical advice I received was...it can't be so small for so long and be any threat, but if it grows we should keep an eye on it.
about the time it reached a quarter, I had a cat scan done. well, we don't know for sure, but it can't be any harm, let's keep an eye on it.
a little over two years ago, I had a noted ENT recommend an MRI and a biopsy. the results came back...well, we think it's a Schwannoma.
not the end result when a bike runs into a string of Christmas lights, a Schwannoma is a random growth of sheath cells around a nerve. benign, in almost all cases.
the ENT recommended it be removed, leaving the nerve itself intact, grafting a new nerve should there be any problem with that. he would bring in a colleague, and have a neural monitor group attend.
I got from that that it would be his first time performing such an operation. I started looking about.
Dr. Nemechek, who was turned up by Stewart Greisman's far flung web of colleagues, was the founder (head?) of a head and neck mass specialty group, and had seen this and far worse every day of his career. he painted a sterner picture. he said, trying to leave the nerve is a guarantee the growth will recur...it needs to be removed. he whispered to me...nerve grafts don't work so great. he said, you cannot make an asymptomatic disease better...only worse.
it's funny how the person with the darker picture immediately looks the more competant. but Nemechek completely won me over. the office visit ended with us agreeing to another MRI in six months, but no immediate action.
he called after the third six month MRI and said, it needs to come out. this was this past January.
I said, well, I have a batch of really really important shows coming up, ending on April 9th. he interrupted to say, then we'll do it right after them, on the 13th,
twenty five years without a symptom...we both felt confident the timetable would work out.

a couple of weeks ago, it started hurting. kinda bad luck, or poor planning to anyone who felt I should have done it earlier.
days were pretty free of trouble...but at night, there was no way to lay and sleep without pain. I moved from my thin thin pillow to a beanbag neck warmer to a rolled up t shirt, and experimented widely.
advil completely took the pain away and let me sleep. it was the anti-inflammatory thing. but you can't take advil for two weeks before a surgery for fear of blood thinning.
I kept track of everything that seemed to mollify the growth, everything that seemed to piss it off. the list grew shorter...heat seemed to work, then stopped...cold never did much good...someone suggested alternating hot and cold, hot and cold, so I called my ex girlfriend who excelled in that.
but more and more, it likes not moving the best.
so we had discussions about playing guitar.
I took away some gigs, some rehearsals...asked people to carry stuff for me, drive...
days continued to bring relief...nights were hard. I tried to resist the progressive idea, that it was getting harder. tonight it seems like it has been.

I made it to the gigging finish line, and am within 36 hours of being there for the procedure. not long. if it's kind of hard now, it's not long. I've made it.

I think the biopsy acted as character motivation for the Schwannoma to grow. I think even Nemechek will be surprised at the self confidence it has acquired.
I called him out of the office two weeks ago. pain, some numbness. he said...well, that's why we're having it out.
he didn't think there was a new emergency. so I don't either.

surgery is never risk free, never a "gimme" putt. stuff happens.
but I am not haunted by spectres of some other outcome than Nemechek's plan A, two weeks of laying low, another two weeks I tacked on myself not to schedule a damn thing...and then a normal summer. he's the Big Lebowski. I'm going with his idea; the biggest long shot louie at hialeah wouldn't bet against it.

May 13th, we see if I'm ready to jump back in. if not before


the purpose of this blog, which I or Kathy or Lisa or Janice or Debra can enter posts in, is to have a place where the heartwarming numbers of good people who have expressed concern may find information and updates in a second.

I'll be in the hospital, I'm told, 36 to 48 hours.
they gave me a code for anyone who calls the hospital, to directly access my status updates...I think it was 3617, but I can't find it...
many people with beautiful hearts have told me of their intention to come see me in the hospital.
it's a gig I kind of don't want to have very well attended. whatever entertainment I can manage on a good day might not be appropriate while I am pulling my energy together. I won't be arranging or rehearsing any parts. I tend to be the loner kind of patient...less interested in telling my story again to new ears than silently regrouping. and what I think about hospital is that there is no lack of staff interruption at the very least.
I'll be online, here, the first minute I can be.
and I have a support system that any man would drop to the ground in gratitude for.
if everyone were to come who promised to, we could have our own version of the last scene of It's a Wonderful Life. and I'm taking every bit of every one of those good wishes with me, very, very gratefully.
I don't take breaks when I do my solo act. I've been saving up. I'll be taking one now. hope that's ok. talk amongst yourselves.

when it's over, the only time I'll mention sheath cells again, I promise, is if I see her selling them on the shore.







9 comments:

  1. Dearest Scott,
    Thank you so much for thinking of all of us who are thinking of you. We want very much to let you know that we are with you in this as much as we possibly can be. We have discussed coming to visit afterwards but want to honor your wishes of very little audience for this show. We'll keep the option open to how you are actually feeling post surgery. After all, we will have lots of time to catch up once you are completely healed. A million hugs and loving thoughts go with you tomorrow. Thanks again for allowing us to be a part of this journey. Jim and Vickie

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  2. Prayers surround you, my spirited friend. Thanks for creating a place for us to stay informed. Hugs from here, Mary

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  3. Scott,

    Of all the nerve(s). Positive thoughts and talk to you soon. - Keith H.

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  4. Think of it....life 'post' schwanoma'!!! Sleeping pain free again will be bliss. Take your time..."dwaddle" if you must...and come back to us soon. My thoughts and prayers are with you my friend. Love Peggy

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  5. Thanks for putting this blog together and keeping us concerned informed. Please know the New Mexico Enchantments are keeping watch and sending you love and healing. Tim and Connie

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  6. My God, Scott, your sense of humor, if nothing else, will pull you through. As Robert Palmer said, Simply Irrepressible." Or something like that. You're the best, buddy. I haven't seen anyone correctly deploy the word "mollify" in writen form since, oh I don't know, High School!.

    Susan asked me when we could come visit you but I understand your preference for the solo act and we will follow you on this site. You know that our thoughts and positive energy are with you along with all our (and your) friends: Black Jack Billy, The Bingo Man, The Peanut Butcher, that Dirty Dealin' Mother, Jesse James, Tatiana, the Rollin' Rocker and last but not least, Kickin'McCoy - that rubber-legged boy. Knock it out of the park, pardner!

    Bill and Susan (the Roses to your Bent)

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  7. Hey Scott,
    Happy to hear you have come through surgery great! Thanks for postponing to accommodate my fabulous concert! Talk to you soon!
    All good thoughts sent your way, Christy

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  8. Hello Scott.
    Hope you are well today.
    Keep getting better and better. Good energy and thoughts you way!
    Denise

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  9. We are estactic that you are home by the time we are reading this blog Better news could not be had for all of us who love you (and need you) :0)
    Great news from the Doc about grabbing a guitar soon. I know that doesn't break your heart
    we will continue to read your blogs and with your permission sometime maybe stop by some evening for a visit when I get back from my son's wedding
    much love,
    Vickie (Jim sends his best too)

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