Thursday, June 29, 2017

Into The Fire We Go -- Part 1

     It's been quite a week for 2 friends of mine.  Both got diagnoses no one wants to hear.  One got a colon cancer diagnosis and had immediate surgery.  Another friend had a re-occurring skin cancer on his skull bone hit in another area and the lab results show it to be even worse than 3 other cancers he has had.  Both friends are subscribe to a positive mindset.  One handles it with "#fuckcancer" and a kick-ass attitude post-surgery.  The other, by using affirmation and prayer that the cancer is localized and not metastasized until more tests are run this week to finalize a treatment path. Everyone handles cancer in their own way. is Part 1 of my Journey With Cancer.....
When my cancers started roughly 35 years ago, it was all basal cell carcinoma..."plain and simple." HA!  NO CANCER IS PLAIN AND SIMPLE!  I always was told basal cell is the easiest to treat and cure....again...HA! Tell that to the basal cell's I've had!  They don't listen very well!  As I recall, I had a couple of spots on my face frozen off before a spot appeared on the bridge of my nose that changed everything for me.  My then-dermatologist froze it was very painful and I thought the old-doc was applying his body-weight against my nose with that gauze pad balled-up and in that cryogenic solution. It felt like 60-seconds of frozen agony on my nose bridge.  When I went back for follow-up he said the area looked good.  But the area didn't heal. And when I went back the doctor wasn't there..he had RETIRED!  I guess he used what-ever energy he had in him on my nose...and I done did him in...he was gone to Florida!  SO, his replacement doctor referred me to another dermo in the same building.  It was a blessing I got her!
     This new doctor was very nice...well-thought-of in the dermo field. She took one look..and I think did a punch-biopsy...and referred me to ANOTHER dermo that was a specialist in the area of Mohs surgery.  That dermo became my dermo for the next 25+ years (until my new medicare insurance IPA decided, in their wisdom,  I needed to see a doctor closer to me and wouldn't refer me any longer to my wonderful dermo in Santa Ana, CA.).
     My "new" doc in Santa Ana, Greg Bartlow, was/is truly wonderful. He started on the nose....taking a level, getting clear margins, sew me up or cauterize...and send me on my way..months later..another basal on my nose....etc..this went on 8 times!  RE-curring..not Re-OCCURRING as each cancer removal had clear edges.  For a simple cancer, this little bugger was always aggressive! At one point he had to do a forehead flap on me as there was so much to remove in my nose!  That surgery was fairly nasty!  Ugh...Skin stitched up for a week from my forehead, "flapped" over to my nose and stitched in place to keep a blood supply going to my nose. Big old white bandages. I couldn't bend over for 2 weeks or so. was a success as far as the blood supply went..but months later..a new basal appeared.  Then Dr. B sent me to a tumor board at a local hospital. They all agreed on radiation.  SO I went to Hoag Hospital in Newport Beach for 31 or 32 radiations treatments.  They did an excellent job blocking off the teeth and jaw as I had no bone loss...I wouldn't realize how GREAT a job they did until a few years later when I needed dental implants at UCLA! (More on this later!).   The radiation made me very tired and I ended up taking a month off from my job. The radiation did its job.....for 2 years.  UGH.. but the cancer re-curred!!  Even Dr B was floored!  So he sent me to UCI Medical Center (University of California in Irvine) where they were the first to recommend a rhinectomy--the removal of the nose! I literally RAN out of that hospital to my car not wanting hear anymore about the procedure and how I'd look!  The doctor at UCI told me, "Oh, we'll give you a pair of glasses after the surgery with a nose on it and a moustache and you wear that!" Oh those joke glasses you see at Halloween?!?  Like..Groucho Marx???  My!!  I bolted out of there..and somehow made it home.  I'm not a drinker, otherwise I think I'd hit the scotch (ok, I LOVE scotch but I seldom drink alone or at home!).  I was scared. I was pissed.  I was panic'd.  I had a roommate at the time..he tried to quel my fears.  My other best friend, Roger Gramling,  tried to give me an ear to talk to and comfort..but I head to face this head-on.
     I have always been a big believer in Easter medicine and alternative medicine in conjunction with Western medicine. I went to a Chinese medicine clinic in Anaheim. They started me on an accupuncture regimen for a few weeks and this VERY NASTY tea concoction that I would brew at home. It would stink up the whole house as I brewed it.  One time it set off the smoke detectors in the house and the firemen showed up!   The one fireman gave me his condolences upon smelling the nastiness of the herbs. Needless to say, the herbs and the acupuncture didn't do any good. The Chinese doctor admitted my cancer was too strong for the herbs.  It looked like Western medicine for me..and surgery.  I went to 4 cancer institutes....UCI, Scripps in La Jolla, Roswell Park in Buffalo, NY (they had an experimental treatment using blue light)...but by the time I got there, my cancer was too far down my nose and had opened a lesion in the tip of my nose..they had to refer me BACK to California....and UCLA Medical.  I did get to see Niagara Falls with a very good OLD friend of mine, Chris Merritt, who accompanied me on the trip. We had so much fun taking Maid of The Mist behind the Falls we went 2 days in a row. We also got up to see Toronto and had the best time gong up in the CBN Tower (I think it is, I keep calling it the CNN Tower and I know that isn't right!) and walking the streets and hitting some of the bars on our only night there.
     Back in Los Angeles I saw the specialist the Roswell Park Cancer Institute referred me to.  He referred me to another the head and neck division, I think, Dr. Eliot Abemayer.  Also, my soul-partner and best friend, Roger, had been watching PBS and saw a program on a doctor at UCLA who made facial prosthetics--noses (!), ears, eyes, etc...all very natural looking, using a system where the prosthesis was attached by glue. The clips would clip onto a cross-bar that would be surgically implanted with dental implants.  Again, no glue..very important to me. I asked the Head and Neck doctor about Dr. Roumanis in the Maxillofacial department.  I saw her in conjunction with Dr. Abemeyer.  I also saw an oral surgeon, Dr. Felsenfeld, who would do the implants later on.
    So. Dr. Roumanis and her team (kudos also to Dr. Kendra Schaeffer now in Philadelphia, I believe) worked in conjuntion with Dr. Abemayer during the surgery to make sure there was a base for the prosthesis and that I wouldn't have a tight upper lip.  I told them I sang and wanted to keep on singing..and a tight lip wouldn't cut it..but that also meant a very large skin graft site...ugh. I had had a skin graft done before by Dr. Bartlow..and it was painful and Nasty.  Capital N!
     My assistant minister, Doug Folgesong, now in Las Vegas, was there at the hospital along with Roger, for the surgery.  I was staying at Roger's place prior and after surgery (thanks to the house where I had lived in Tustin being sold..and my roomie and I were given the boot...ugh..everything happens at once, it seems!).  Anyway. the night before surgery, I looked in the mirror at Roger's place...had a good old self-to-self talk.  I remembering talking out loud to myself, saying, "Well, you've been a good nose.  You did me well.  You are a cute nose..but you have to go. It's only a nose."  And with that, I went to bed early and somehow slept even though we had to be at the hospital by 6am which is a good 1.5 hour drive even in the best of driving conditions!
     October 28, 1998.  The surgery was a success, so said the surgeon said. Of course, at UCLA being a training hospital tons of students in white lab coats come traipsing through-out looking and gawking and asking questions.  Very annoying. Ugh.  Oh well.  After I was settled in my room..hooked up to everything it seemed (but nothing like a heart surgery!)...and not being able to nasally breathe..of there was this bolster in my newly opened nasal space...think of the Alien attached to your nose cavity! It was HORRIBLE!  I had to wear that little fucker for 2 weeks!! (excuse my French..but it was a bastard to wear and not be able to don't realize how much you breathe through your nose until you can't breathe through it for any extended length of time..temporary nasal congestion is one thing..but this was another beast!).  Anyway. Rev. Doug and Roger come in. I am GROGGED OUT of my mind..but I could see and hear them.  Doug comes in and whispers to Roger "Oh God" as he saw me...if I could laugh then I would have gave me great confidence (Ha!) having minister utter those divine words upon seeing me! LOL!  I still laugh.  Roger and Doug were so supportive during those minutes and did their best to cheer me up..and I DO recall being in a fine mood...I was flying on I was REAL fine!!  Roger stayed on. Doug left.  I was in the hospital for 3 days.  The worst part of the surgery??  The skin graft!!! YEOW.  THAT WAS HORRIBLE! They even sent out a nurse..not so much for the rhinectomy...but for the skin make sure it was healing properly. I had to get these special bandages smothered in Vaseline to affix to the graft was nasty. But I healed.  And my nose-region healed. And I started trips back to UCLA a couple of times a week for months it seemed as the site healed. maxillofacial was keeping the area clean for me....getting the first of several prostheses ready for me..alas, the glue on kind until I healed well-enough for the oral surgeon, Dr. Felsenfeld, to put in the implants....that wasn't until St Patricks Day, 1999. I DO recall that date!
      The whole process of getting to where I got my FINAL clip-on prosthetic noses (they made me 3 that first time...which last about 5 years) took 14 months. It was the best Christmas present I could have hoped for!!
       I'll tell more in my next Blog, Part II.  Like, how I was featured in PEOPLE and all!  But I wanted to share a quote I love dearly.  It's in a book called "Illuminata" by motivational speaker and author Marianne Williamson. But the quote was sent to me today in an email..a heavenly I am including it here.  It is a great reminder of our Power that we have as individuals.

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness, that most frightens us. We ask ourselves, who am I to be brilliant, gorgeous, talented and fabulous? Actually, who are you not to be? You are a child of God. Your playing small doesn't serve the world. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others."

~ Marianne Williamson

   Let your Light Shine!

Journey On!

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  2. And you're still beautiful.

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