The Long Wait

Up until this point it has been a game of “Hurry Up and Wait.”  Each time you think you have it all figured out you see a new doctor, get a new piece of information or talk to someone who has been there.  Despite your resolve and knowledge that this will be alright, there is the emotional roller-coaster that awaits every day.  I really like the part at the end of the movie Parenthood, where life is depicted as a roller-coaster ride.  You have the anticipation of the hill followed by the exhilaration of the drop, then come the twists and turns only to encounter another hill.  Life is wonderful, you just have to remember that along the way there are situations and feelings that are out of your control and your only job is to acknowledge them as feelings and situations that are subject to change, every day is an adventure, if you want it to be. Don’t let fear immobilize you it will if you let it:

  • False Expectations Appearing Real
  • Forget Everything And Run (polite form)
  • False Experiences Appearing Real
  • Finding Excuses and Reasons
  • False Emotions Appearing Real
  • Forgetting Everything About Reality
  • False Expectations About Reality
  • False Evidence Appearing Real

You can wallow in the depths if you want or you can seize the opportunity for growth.  Thank God that sobriety and my life so far have opened my eyes to the wonders and joy of day to day life.  Nothing is promised or forever, if you don’t like where you are you need to take action.  Even if you do like where you are action is needed keep you there.  As my dear friend Billy Hoge reminds me to ask upon awakening, “Isn’t it curious what God has in store for me today?”

 

Enough proselytizing, I let off with the call to UF Shands for a second opinion.  I finally hooked up with Lisa the Director of Intake Services the next day.   Of course, that meant filling out the 4th set of new patient information forms.  Until you have filled out one of these you have no idea.  They are typically 9 or 10 pages of medical history, family history, HIPPA forms, release of medical records forms, medications and the ever-present release of liability forms – it is an adventure.  But to the amazing Lisa’s credit she had all my records assembled in 3 days.  The problem was that the radiation oncologist was at a conference so we had to wait until October 3rd for the appointment…..UGGGGG!  During that time MD Anderson called about every other day to schedule appointments so they could get on with it, only to be reminded that we were on hold until further notice.  Finally, the 3rd arrived and Jan, Kat and I made our way into the doors at 7:30 am to meet the receptionist who cheerfully greeted us and handed us our schedule for the day.  We met with the financial counselor first and listened while she read us our rights, signed more forms and again signed another release of liability…LMAO!  Then we were escorted to the intake station for blood pressure, height and weight.  Finally, a place that told you to take off your shoes and empty your pockets before stepping on the scale!  By this point I could have told her 124/78, 5’10” and 184 pounds but you have to play nice.  And it was revealed that I was down to 178 because of the throat biopsies.

Next was a meeting with my nurse case manager Carlene.  She reviewed my records, talked about treatment and assured the 3 of us that my radiation oncologist Dr. Roi Dagan was thorough, competent and compassionate.  This was followed up with meeting Dr. Dagan.  Guess what? He stuck that camera up my nose through my sinuses and down my throat AGAIN! But to his credit, he did the best job yet.  He then set down and showed us his exploration, CAT scan and Pet scan.  He took the time to tell and show us what he was looking at, why he was looking at it and to show us where the cancer was, all the while explaining what we had to do to get rid of it.  He explained that we would be doing 6 weeks of treatment, 5 days a week with a double dose on one day towards the end of the week.  That would eliminate the 7th week.  He then went onto side effects and of course we got into the sore throat, not wanting to eat, possible loss of a few salivary glands.  But to our surprise he told us that the need for a feeding tube was only seen in about 2 of 100 patients.  I just had to be committed to getting 2000 calories down a day in any form that I could tolerate.  He said there might be some disruption in thyroid activity, but since I was already on medication, it would not be a problem.  And yes, I would probably lose a patch of my beard. He was very upbeat about my prognosis and reassuring to the 3 of us as he gave us his cell phone number and asked me to use it if I ever had any problems or issues.  What a relief to feel like you were finally where you needed to be.

That got us to 11 am and the next appointment was to have my mask made again and having a CT scan done with contrast that would run 2 hours, so Jan and Kat left me there and ran to Blue Boy’s, for lunch.  If you haven’t been to Blue Boy’s you better plan a trip.  They have been in Jacksonville for over 40 years, bake their own bread daily and the sandwiches are HUGE.  There are 3 locations, but we like the original one on Norwood Ave.  http://www.blueboysandwiches.com   So after the fitting we saddled up and ran down about a mile to Lavilla to meet with Dr. Guthrie the medical oncologist.  The good news just kept coming.  He spent some time doing a physical examination then explained the chemo drug that they would be using.  It is Cisplatin and a very mild form of chemotherapy drug.  The purpose of the chemo is to enhance the effects of the radiation and that I would be receiving one treatment a week for the six weeks.  He also decided not to use a port because Cisplatin won’t burn the skin and did not want to do anything else invasive to my body.  He was again reassuring, telling me that the feeding tube would probably not be needed and explained that if I would keep hydrated with electrolyte drinks, eat high protein soft foods, drink high protein shake and smoothies along with some ensure, it would be uncomfortable but doable.  He ended the appointment by giving me his cell phone number with the same instructions as Dr. Dagan.

We walked out about 4 o’clock but despite the long day were excited and hopeful with the treatment plan and the staff.  All of the people that we met that day were committed to the three of us and our desire to treat my cancer in the most effective and minimally invasive manner.  I had been told by many cancer survivors to search until you meet the team that you feel good with.  Not necessarily the nicest, cheapest or most convenient, but the ones who care about you and your treatment…..don’t worry you will know it.  Standing in the parking lot, all three of us had that feeling, we had arrived and treatment would start on October 16th with the first radiation treatment and the 17th for the first chemo treatment.

LESSON OF THE DAY – Fear my new definition – Face Everything And Recover or Forget Everything And Relax

Author: Don

Hi my name is Don Penny I am a professional woodturner in Jacksonville, FL. I was diagnosed with stage 4 metastatic squamous cell carcinoma in 3 lymph nodes and the base of the tongue and this is my story of day to day life while fighting cancer.

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