Day 3

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Day 3 182lbs

Welcome back!  Today was a day of differences.  I was a little head-achy, my tinnitus was a little louder, but I woke up and was grateful to begin another one. (even though it was 5am)  I know I’m supposed to be eating but I never thought that I would have to force down food!  I have been eating between 2500 and 2800 calories a day high in protein, drinking at least one Pedialyte  and 2 liters of water.  Between peeing and rubbing my belly I use up half the day. Then there are the every 2 hour baking soda rinses for the mouth and after radiation icing down for 15 minutes and an aloe vera rubdown.  But I feel good.  I wish that I could get out to the shop – I have been working on a table that is turning out very nice, but I was on the phone with insurance, finances and doctors all day.  I did take some time to talk to my  friends Mac Brown in the morning and Jeanie Theirault in the afternoon.

The center waiting area is light and airy and full of life. Casey, the receptionist, greets

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Reception and waiting room

you with a smile and your name.  There are art projects, kid’s play room, kitchen, coffee and plenty of families and patients to talk to.  I partook of the weekly lunch for patients, families and caregivers.  It was very cool.  It is catered by different restaurants and today was Zoe’s Kitchen.  There were beef, chicken and spinach, wraps, rice, fresh fruit and a complete salad bar….top that off with chocolate cake-

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lunch

delicious calories plus! When we settled down at our tables they went over activities that are available to patients; dinner at Indochine, a tour of the Federal Reserve, a cocktail hour another night, reduced tickets to the Icemen, and the free events around town.  Next they had a doctor come up and explain his specialty for about 15 minutes, then went around the room letting alumni, and graduating patients share their experience strength and hope to the newcomers.  Then we got to introduce ourselves talking about where we were from, our cancer and treatment.  As I’ve probably told you, we

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chime ringing

Jacksonville residents are few and far between.  In the room of about 40, only two of us were from here.  I made it a point to run down some folks to let them know if they wanted to know where to go or what to do please ask or call….I’m going to have to start carrying more cards! I even sent one guy over to the Dreamette, he was jonesing  for good soft-serve.  When the lunch was over we all gathered in the lobby where to graduates rang the chimes in the lobby to signify hope and completion and had their pictures taken.  It was touching to watch these families say goodbye to the friends that they had shared so much with and the gratitude they had for a new beginning.  Next it was off to treatment with Hanna and Jennifer who tied me down and gave me a sunburn……it is one expensive tanning bed!

Today was very reminiscent of early sobriety.  You come into the rooms a broken person thinking it is the end and you are sentenced to a glum existence.  I was accepted with open arms into a community of experience strength, hope and fellowship. Before I knew it I was getting out of myself and helping others,  I just had to show up and be willing to do some new things.  I came home smiling, happy and filled with love and gratitude.  Who knew so much good could thrive in a place filled with so much tragedy.  Thank you for letting me share – it means so much.

Don

LESSON OF THE DAY – Be willing and take action, you won’t be sorry.

 

Day 2

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I-10 Morning traffic

Another blessed day!  Thank you all for your messages on Facebook, Instagram, text and calls.  They mean so much I can’t adequately express my gratitude.  I did make it through the traffic!  For a normal 25 minute trip I have to leave 45 minutes early for the I-10 traffic and to make matter worse I passed the chemo exit and had to side street it.  But, as usual, God was on my side and got me there 5 minutes early.

Today started my 1st Chemotherapy therapy.  I thought it was

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“Hooked Up!”

going to be a 1 1/2 hour visit but forgot about the weekly exam with Dr Guthrie. Soooooooo it turned out to be 4 hours.  When I finally got to my recliner and John started hooking me up he asked when my radiation appointment was, I told him 12:40 and got the “No way you are making that dude!” so he called radiation and got me a 2 hour extension.  For my treatment they start with 2 anti-nausea medicines and a steroid, followed by the Cisplatin and finished off with a bag of electrolytes.  2 hours, easy as pie!  I passed the time reading, snacking and talking to the nurses.

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The infamous lines!

Next was a quick trip up the street to radiation for another ride with Ms Hanna.  She praised Kat for her restraint of Motherhood in not taking off my stripes and stickers so 30 minutes later I was heading back home to ice down my neck and put on some aloe vera.  I caught up with some phone calls, answered some emails and headed to yoga.

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Trisha starting with her reading of the night

I do yoga with another group of people that are part of my family.  I have been part of the group for about 9 years and we meet at St Marks Episcopal church on Tuesday and Thursday nights.  The practice is lead by a Yogi named Trisha who is also in recovery and she intertwines readings, stories and music to accentuate her life lesson of the day and the practice.  We are for the most part an older group and it is held in an old church sanctuary with stained glass and candlelight and the object is like my other program….progress not perfection.  I consider them meetings for the physical, spiritual and community growth that they provide.

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yum!

Finally, I am at home where my lovely wife made me a pot of Chicken Tortilla Soup, it was AWESOMESAUCE!  I talked to my Mom in Louisville tonight and found out she has a battle with some skin cancer in her leg, but like me, she is in good hands and they will get it taken care of.  She could use some prayers if you can squeeze them in.  It was a great day filled hope, love encouragement and growth.  The “Go Fund Me Campaign” has raised $3,300 in a week and a half!  Thank you all for your help in the way of donations and sharing my posts; every little bit helps.  We can now pay most of the the bills we owe so far. We are so grateful and thankful for having you in our lives – Thank You!

Here is the last picture, my Day 2 morning shot.  Have a wonderful night and we

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Day 2 182 lbs

will catch up tomorrow!

Don

LESSON OF THE DAY – Be cognoscente of and grateful for the people that love you and care

Day 1

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182 lbs ready to go!

The treatment begins!  Today I had my 1st radiation treatment at the UF Proton Center.  I am having traditional radiation but people come from all over the world to be treated here.  In my orientation class today we had people from England, Ireland, South Carolina and Maine.  Cancers ranged from prostrate to brain and ages from 10 to 78.  But we got to see the facility and the amenities it offers.  There are yoga classes, art classes, cancer support groups, caregiver support groups and a weekly lunch to meet others going through treatment.  The blessing of another community.  I met with Dr. Dagan, Carlene and Michelle, my Nurse Case Managers.  They went over treatment care and products to use to help the burn and sore throat.  They even gave me an aloe plant so I could use fresh aloe!

Next I was off to treatment where Katy and Jennifer prepared me for treatment.  First they wanted to know where the alignment sticker on my chest went and I had to confess that Kat had an incident of momitis

and pulled it off while she spit on her finger and tried to rub the marker line off!  Thank God I stopped her before she removed the line, they both laughed and told me to tell her to LEAVE IT ALONE!  I then asked them to take a picture of me on the table so I could share it with you and after they locked me down they photo bombed me taking pictures of each other!  They did a CT scan to compare to the placement to the treatment plan then made some adjustments and off we went.  It took about 5 minutes. Finally,  I had to run down to Lavilla for a blood test to get ready for chemo tomorrow. It was a long 4 hours, but I really had a good time and could not ask for a more caring and competent team.  God is definitely watching out for me, thank you for your prayers.

The most humbling part of the day was the overpowering support I woke up to.  Kathy was like she was sending her child off to school. Texts from Coleman, Keith, Bobbie, Jan, Albert, Patti, Jeanie, Susan, Amy, Joe and Abby and calls from Joe and Chaz.  I was crying because I felt so loved and cared for, it was overwhelming.  On the boring side I went over my 2000 calories, got a bunch of filing done – I have been inundated with paper and cleaned off my desk.  I finished the day  with a call to my mom and settling down on the couch with Kat to catch you up and watch The Voice.  Sleep well and we do it again tomorrow! Thanks for letting me share.

LESSON OF THE DAY – Grow your community

 

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.  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

Let Me Introduce You My Family….YIKES!!!

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Jan and Albert

In order of age, 1st there are Jan and her husband Albert.  They have 2 boys, Will and Chaz, and the boys each have 2 wonderful partners.  I answered the door when Albert showed up for their 1st date almost 40 years ago.  Since that time, we have lived together numerous times and been through so much together – life is good.  They are the most giving, special couple, loved by all who meet them.  Albert is the all American good guy.  In times of indecision, I stop and ask myself; “What would Albert do?” or seek his advice.  The answer from Albert always comes with thought and spoken from the heart with love.  One of Kat and mine’s favorite things to do is to have Jan and Albert over for dinner with us. Albert plays the violin and can tell you the exact day and time of any significant event in our lives and most of the insignificant ones!  Jan and I have been hooked at the hip since high school.  We have gotten into more trouble and forgotten more times than most people can remember. We have been a through thick and thin.  I even got to be in the birthing room for Will’s birth.  I could not imagine life without Jan and her family by my side.  And bonus! she really loves my wife with all her heart.

 

 

I also have a brother Joe.  Joe and his wife Nancy live in Louisville, with their incredible

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Joe and Nancy

blended family of 5 children, 4 spouses, and 7 grandchildren. Joe and I have always been able to talk but it has difficult with Jan and I here in Jacksonville and him at home.  A couple of years ago, Joe and I hashed out the differences and it has been so wonderful to have him in my life again.  He selflessly sees to our Mother, and Jan and I rest easy knowing that Joe is there taking care of things. Joe and Nancy are special people, I love them and I am blessed to have them in my life.

Family is a tough thing.  In my opinion, having a close family is a daily task. It takes a lot of care, patience, thought, restraint of tongue and love.  We love each other dearly, and finally we have figured out how to co-exist peacefully in each other’s lives.  I couldn’t really tell you how we got here but it took God’s help. It has been a journey of hurt feelings, times of silence and spousal situations.  The good news is that we all got tired of the bullshit and have kinda figured out how to talk to each other about our feelings.  Joe does an exceptional job, it reminds me to play honest.  I’m glad for the journey and blessed that we have gotten here, but I do wish it had happened sooner.

Okay back to the excitement.  I have to get you caught up before Monday.  The biopsy was September 13th and we had a week until “The Big Day” at MD Anderson. We had radiation oncology, mask fitting and chemo discussion from 8:00am until noon. The radiation oncologist discussed treatment and the possible long-term effects, we got into loss of thyroid, loss of salivary glands, needing to use fluoride trays for the rest of my life, my throat would get extremely sore, difficulty in eating, loss of speech – but it would come back with therapy, swallowing difficulty again with therapy, I’d lose part of my beard, and the best was a feeding tube if I lost 18% of body weight. AND we start in 2 weeks. Pardon me but, Holy Shit!  But I remember that I am blessed to be here and buck up even though I was scared shitless.  Next was chemo and scheduled a port insertion, but side effects were just a metallic taste, temporary, and ringing in my ears.  Haha I finally had a win….I have had tinnitus for forever….score one for the patient!  So, then

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The mask

they took me to a scanning room to have my radiation mask made.  Strip from the waste up in a cold ass room and lay on the cold table, but they did give me a heated blanket.  Bravo for the person that suggested heated blankets. Next, they line me up dead center and give me a heated mouthpiece that I bite into and hold until it hardens.  Then, they heat this huge piece of plastic on a frame in warm water and put it over my face, lock the frame to the table and start forming it to my face and shoulders and connecting it to the mouthpiece that is in my mouth.  Then they lined the mask up with laser dots and lines that they had drawn on me. They then transferred the alignment to the mask ensuring the same position for each radiation treatment.

While Jan and I were doing this, Kat had to go get her necessary office items from the flooded Wells Fargo building, because there was no idea when they would reopen and she needed her things to continue working from home.  They let 3 floors a day, no air, elevators not cleared for human transport There a guard escorted you up 8 flights of stairs, gave you a cart for your things, and thankfully would send the cart down while you walked back down.  Again, thankful she wasn’t on the 26th floor and that the elevators worked enough for her stuff.

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WELLS FARGO – Westside

 

Then we were off to a one o’clock appointment at another cancer practice see what they had to say about our previous visit.  This practice was recommended by a friend just to give their opinion.  They are not head and neck cancer guys, but they are very accomplished prostate and breast oncologists.  After some frank and sometimes humorous discussion, it was recommended that we seek a second opinion at the more experienced UF Shands.  They are one of the top head and neck cancer schools in the country and guess what? They are just across the river.  So, we went to the parking lot and started making phone calls, to see if we could get in to UF fast, and to put MD Anderson on hold.  I won’t make you wait, we this was September 20 and we got into UF Shands on October 3rd.  Just enough time to calm down and kinda forget about it.

 

LESSON OF THE DAY – A family, related or not, requires action on my part….and I need to fake it until I make it if I want to be an active partner.  BUT it takes 2!