Day 81 – The Beat Goes On

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Heading out for a walk

Sunday night the weather is glorious and the smell of alcohol ink is in the air!  The past 4 days have been spent in repair mode after the 5 day push last week.  I have consistently been sleeping 12 hours, but I have been going to sleep and staying asleep so it has been much better.  It is amazing how letting go and not getting hung up on what you should be doing eases your mind at bedtime.  I have also been taking a nap each day so I guess the symposium and testing was harder on me than I realized.  Today was the first day that I felt like walking this week, 2 nights of yoga was enough extracurricular activity.  My activity with Louise, the weather, prayer and personal work have eased the depression to barely negligible.  I even did okay with Kat spending 3 days cleaning the shop, I worked inside on the taxes and got them ready to submit.  It was probably a good thing I didn’t go out before yesterday.  I went out to help for about 3 hours at the end and wore myself out.  After the group left I could not move or keep my eyes open so I took a nap at 4 and still went to bed by 10:30.

Amy, Keoni and the crowd surprised us with lunch from Fire House and a birthday party for our great niece Baylie.  She doesn’t turn 3 until February 28th but she wanted to make sure that she celebrated with Grandma and Grandpa and we were blessed to be included. We sat outside on the patio and enjoyed a beautiful day.  The only downside was when Baylie’s 5 year old sister Rylie wanted to go out to the shop and turn tops.  They spent a day with Kat and I about a year ago and we spent the day in the shop turning tops and making wooden boats. I had to tell her next visit but we did get out the tops and had spinning competitions to her delight.

Today we got up with aspirations of attacking the world with gusto but settled for another quiet day at home together.  Kathy worked on her alcohol ink class and homework and I went out for a long walk.  I was so struck by the colors and flowers and how fast that they are showing up – God’s palate!

We had an excellent steak dinner and enjoyed a nap together.  I am consistently amazed at my life when I do the things that I am supposed to do.  Of course you have to trust God, set aside your ego, try and help others and take particularly good care of yourself – and we can all read through the history to see how well I do with that…LOL  The good news is that I seem to be getting there more quickly anymore. They keep telling me “Progress not Perfection” and it is starting to maybe sink in.


LESSON OF THE DAY -Life is 10% what happens to you and 90% how you react to it.  Charles R. Swindoll

Day 44 – Phase 1 Completed!

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Day 45 – I AM Blessed!

The end of Phase 1 – Hallelujah! Thank God, sobriety, Kathy, Jan, you, texts, emails, phone calls, cards, prayers, support through the “Go Fund Me” drive, the many Doctors, Nurses and Techs and myself for getting me this far!  When Kathy woke me up this morning, I truly thought that I was going to die. I had another one of those headaches, my throat was sore from one side to the other and my ears ached.  Soon after rising the headache was gone, a shower helped my ears and the Throat Coat Tea soothed my sore throat and I guess I earned some grace because there was no traffic on the way in.  It was a beautiful morning that picked me up even further.  Upon arrival at 9:30 our receptionist Casey was out sick which bummed me out a little but I was ready for the last one at 9:40!  Hmmmmm, little did I know!  Jan showed up at 9:50 and Kat at 9:55 but they came out and got me just before 10.  Jenn was back from the holidays and it was reassuring that she was going to run my last treatment.  That’s what I thought!  After they got me strapped down Jenn realized that the tech before her had not correctly exited the sequence and the computer was frozen up.  Not to sweat it, 10 minutes and a hard reboot got us underway.  I got to give hugs to Jenn, Hana and Michaela on the way out, but they were to busy to come out for the celebration.  Carlene was waiting for me at the desk, we picked up Jan and Kat and I had the privilege of ringing the “Chimes of Hope.” Here is the link for the video Ringing the Chimes of Hope  It was so cool when everyone in the reception area applauded, but I wanted to applaud them for just being there.

I wish that I could tell you that I danced home, went to the shop and cleaned the house before Kathy drug her sexy self home, but alas I would be lying.  I worked on my neck and went straight to bed for another 3 hours then sat on the couch until 6 when I got up, emptied the dishwasher and fixed my dinner.  It was a let down in some respects.  Yes I knew that there was going to be a period of healing, but I have done so well that I did not expect to feel this bad.  I know, I have been subjected to 45 days of chemotherapy and radiation and that there is no reason to think that I would feel better today, but that doesn’t mean that I didn’t want to or that I am giving up.  I ate 3 meals today, drank 2 electrolyte drinks, and had 2 ensures as well as sleeping and resting.  I WILL feel better, I know it, sometimes I just have to have a “Pity Party” to put it behind me, and tomorrow is another day where I can sleep until I get up and see what the day brings – If God sees fit.  I had a good day today – I woke up next to Kathy, I completed treatment, Jan, Kathy and I graduated – no we all graduated – and I was given a day of healing – God is Good!


LESSON OF THE DAY – Just because you graduate doesn’t mean the journey is over.


Ready To Go!


I don’t want you guys to think the summer has been spent seeing doctors and dealing with cancer.  It has been a great year despite the setbacks.    In May we went to my niece Sarah and her husband Chad’s wedding in Louisville with Jan and Albert, Will and Jessa and Chaz it was a blast!19275333_10100260314820911_4232040575637770647_n  The whole family had not been together in a long time and it was long overdue.  Next up was a trip to the AAW (American Association of Woodturners) Symposium in Kansas City with our sweet friend and Sister Wife #3, Tina.  We drove to Kansas City by way of Dover Tennessee to drop off her 12-year-old nephew Ben. I’d forgotten what 12 hours in a car

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Tina, Kat and I

with a 12-year-old was like!  I can tell you that I am now an expert on fidget spinners.  From there another 10 hours to Kansas City and the wonderful world of woodturning.  We shared a hotel room and had the best time.  The symposium is a frantic, mind numbing experience.  It starts on Thursday night and runs until Sunday afternoon.  There are 4 1½ hour rotations each day that start at 8:oo am and run until 5:30pm.  Each rotation has a choice of 14 demonstrations by 61 of the best turners in the world.  Add panel discussions, auctions, dinners, vendors and the galleries and it is a whirlwind!  Finally Kat, William her son and I took a day to lounge around DeLeon Springs near DeLand Florida.  A nice lazy day with make your own pancakes, plenty of sun, ice cold spring water and a nap or 2.

The rest of the summer has been spent celebrating birthdays, working and playing in the shop, eating Kathy’s amazing weekend feasts, going to art shows, having fun with our friends and family and living day to day life.  I am a lucky man living the dream!  Here are a few pictures:

We had a great weekend this weekend, Kat got motivated and cleaned the screens on the back porch

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Kat at Work!

Saturday morning then we went to a send off party for our nephew Evan at Mellow Mushroom.  He leaves for the Marines in 2 weeks and we are very proud of him.

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Evan, Kat and Me

Today was a shop day, Kat worked on her top secret fair project and I worked on a table top while Sidney watched.  I love spending Sunday in the shop with my girl.  We can spend hours without talking to each other, but just being together making is amazing.

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Kat and her secret fair entry







Tomorrow starts treatment, I see the radiation folks at 10:30 am and we are off to the races!  I am excited, scared, grateful and curious.  Thank you for being on this ride with me, I could do it without you, but the company is appreciated.

LESSON OF THE DAY – Make the best of every moment, even the bad ones

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.   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

August 19th – September 4th

Hey guys welcome back.  Over the next couple of days I am going to catch you up on the diagnosis process then will go live  when treatment starts.

The hardest part of this so far, has been the telling of the story to those in my inner circle.  And there are so many people that I still need to tell. There is no easy way to say, “I have cancer.”  The good news is that my cancer is very curable, we caught it in an early stage and the suggested treatments are difficult but tolerable.  I don’t hurt and the only real symptom is feeling tired.  Since the pneumonia, being up until 10pm is a little know luxury and my Saturday and Sunday mornings don’t seem to start until about 10 or 10:30 largely because Kat gets up, sneaks out and closes the door to let me rest.  So, you start the conversation with “I have cancer, but before you freak out listen to me!” and about 80% do – THANK GOD.  Then you get to tell the story again – hit play and blurt out the details until the love, caring, and support begin to flow back.  Maybe that is an idea!  I could just record it on my phone and when I get to that part – HIT PLAY!  Seriously, I have cried more tears of joy with the memories of what each person means to me, what we have gone through and how we came into each other’s lives.  It hurts to know that the news will worry them to the point that sometimes I wallow in my selfishness not wanting to share, but in the end, I know how mad and hurt I would be if they didn’t come to me with their troubles.  I am so blessed to have such a wonderful circle of friends who come together to help each other when the time comes without thought of burden, only love and caring.

So, the 19th of August we got the PET scan done and Dr. Levinson confirmed that it showed the cancer in 3 of the lymph nodes on the left side of the neck, but no point of origin was seen.  I was referred to Dr. John Vu, Medical Oncologist at MD. Anderson Jacksonville and Dr. Julie Greenwalt, Radiation    Oncologist and had appointments to see them on August 30th and 31st.  It was surreal, I really didn’t know what to think.  You know that you have cancer, you think it’s treatable, you found it early enough that the point of origin didn’t show on the pet scan, you know because of the P16 marker that it is probably in your sinuses, mouth, throat, or tongue.  Will I lose my vocal cords, would I be disfigured, can I do it? What is the lesson?  What does God have planned, can I work, will I die?….. Dr. Levinson reminded me that of course I was going to die, but assured me it probably wouldn’t be from cancer – whew!

I started to share my diagnosis and fears with the inner circle.  Kat and I had some uncomfortable discussions but she assured me that we could do this.  We had been through Sally’s lupus and her mother’s colon cancer in preparation for this next journey and besides God always takes care of us if we let him. And we had Jan to help us through the low spots.  Another dear friend and yoga buddy, Jeannie Theriault, had been through breast cancer and with her concern and desire to help; mentioned me to Mitchell Terk of Terk Oncology.  What a special group of people!  Dr. Terk reached out to me and offered guidance and education through his partner Jamie Ceasaretti, Radiation Oncologist.  They worked me in in 3 days and got all my records so that Jamie could see what I had.  What an amazing guy, Jan, Kat and I ended up in his personal office looking at treatment options, the cancer itself, and a general idea of what we could expect.  Half my questions were answered!  It was going to be okay!  Then came the reality of the meeting the MD Anderson team.  On the 30th and 31st we found out that from Dr. Vu that the cancer could be cured, the treatment would probably include chemo and a port for 7 weeks then to Dr. Greenwalt, who after having me snort some foul cherry stuff so she could stick a camera up my nose to look at my sinuses, throat and vocal cords, let me know that I would probably have radiation 5 days a week for 7 weeks, that I would probably have to use fluoride every morning for the rest of my life, that I would probably lose my salivary glands and need to carry water, that I would lose my voice but we would get it back with speech therapy, forget how to swallow again rectified through therapy, and may have to insert a feeding tube because my throat was going to swell and hurt.  Oh, and by the way, I needed a CT scan with contrast the next day to see if we could find the point of origin and see Dr. Moy, an ENT Specialist, to schedule an exam of my head and neck under anesthesia. Dr. Moy, part of the Baptist ENT group, who again numbed by throat and sinuses, thankfully this time with a mist instead of the cherry crap!, and he again went through my sinuses explored around then dropped down into my throat to look at the tongue, larynx, and throat walls for signs of the point of origin that the CT scan was in my tonsil base of tongue area.  It was pretty cool because he filmed the exam and took the time to show us the scan and assure us that the cancer was not in the larynx, sinuses or upper throat. The next step was to schedule a surgical procedure examine the area and to biopsy the base of the tongue and left tonsil through the mouth.

That weekend was Labor Day and we spent the weekend beginning to expand the circle of people who knew and hiding in the shop for 3 days relaxing in the shop and letting the whole situation sink in.

LESSON OF THE DAY – Humble yourself and let your friends love you.