Day 61 – Huh?

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Day 61

2 months since the last treatment – what a blur!  I wish that I could tell you I was better, and I know that I am, I just don’t see it or feel it.  I know that I am better it is just a matter of a different set of evolving issues.  Days come and go highlighted by my time with Kat on the weekends and visits to yoga and the weird symptom of the week.  We did have a visit from my niece Abby. She was in town visiting from Oregon and came over last Wednesday to dabble in alcohol ink, do a bit of wood burning and catch up with her crazy ol’ Uncle and Aunt.  We must have been pretty intriguing because she ended up spending the night. This weekend Kat and I walked together with our buddy Finn.  Jan and Albert went with our friends Julie and Ham to go zip lining over around Ocala and left our buddy with us for the day.

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Abby at Ink Play

I know all of the reasons – cold weather, cloudy skies, rain, the need to sleep, healing, fewer daylight hours, and a propensity toward depression, but I realized that I am depressed and knowing all the reasons doesn’t change the reality.  Now I’m not in a place where I would consider harming myself, but just in a state of general funk, all that I seem to do is just sleep, eat, treat and repeat.  It is strange place for me to be, especially when I don’t feel good.  I find myself second guessing every decision.  When I roll back over in bed at 9am is it because I’m still tired or that I don’t want to get up.  Am I too tired to go to the shop or just depressed? Am I cold or feel the need to crawl under a blanket on the couch?  Now my decision is usually bolstered by my ability to go to sleep but that just makes me want to question why.  Familiarity to the disease and not willing to go there is one of my defense mechanisms and usually results in grasping for support.  1st act was reaching out to my friend Sam who went through this same cancer several years ago only to be reminded that we are all different and I am where my body is supposed to be. Friday was my monthly phone conversation with Chris, my OPTUM Health nurse.  We spent some time talking about where I was energy wise, what I can expect and how do I measure up – you know me Mr Competition.  I always struggle when we have these conversations, because it is always predicated on the premise that we are all different.  Then they tell you you are well and that some people don’t get to where you are for a year!  Sweet Jesus find me a cliff if I felt like this for a YEAR! – Enter FEAR!!  But I did buck up and told her that I was beginning to feel funky and a bit depressed. Her first question – “Are you taking your anti-depressant?”  Oh HELL YES! I would sell Sydney to make sure that I have my Pristiq.  The second was “would you like to talk to one of our counselors? Duh!  After the call I immediately scheduled an appointment with my Therapist Louise who got me through Sally’s illness and death. As a final step I logged on to the American Cancer Society’s discussion boards and chatted with people who are going through the same treatment and recovery.  And as I suspected, I am just where I am supposed to be.  There are people doing better and some not so good but we all understand the mental and physical torture that we are going through. And you can give some tips to the folks that are just starting.

Have you heard it before?  Problem + Action + Prayer = Relief.  So simple yet so elusive, but it works if you work it.  The questions begin to disappear when I admit that I have a problem and seek to relieve it.  Yes it is too cold to go to the shop so do your tax preparation, yes you are tired from your walk take a nap. And from Kathy, a week is too long to wait between posts you do better when you talk about it.

Don

LESSON OF THE DAY – “We need quiet time to examine our lives openly and honestly – spending quiet time alone gives your mind an opportunity to renew itself and create order.”        Susan Taylor

 

Day 41 – The Beat Goes On

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Day 41

So much has been going on – so little time, mea culpa for my absence.  We left off last Friday on my birthday and I am so glad that it is over and I can get back to some normalcy.  The next celebrations are my mother’s and sister’s birthdays February 9th and 11th and I have already bailed on those festivities.  Jan and I normally head to Louisville for the big occasion but I am going to forgo the plane trip, infectious winter diseases, cold weather and a week of running around for a boring but safer and less stressful week at home.  I will make the trip when I have a little more energy and a stronger immune system.  Saturday we both slept until 11 then got up to go pick up the truck and as with any automobile adventure it was a disaster.  Before we left Kathy transferred money to the checking account and away we went.  Well she drops me off, kisses me goodbye and heads for home while I stroll in to pay Ted and pick up the keys.  I get to the counter, Ted rings me up, I swipe the card and declined.  I say we just transferred the cash and Ted suggests we try it as credit and you guessed it declined again.  So I sheepishly ask if I’m okay until Monday  and of course I am because the Mercury keeps Tubel’s afloat and they don’t even wants me considering going anyplace else.   So with keys in hand and spring in my step I glide out to the truck, open the door, wallow in the magic of sitting in my own vehicle, a free man – no longer dependent on the whims of others to transport me, I turn the key and nothing, nada, no bells, dings or juice in the battery.  So back into see Ted who sends out the mechanic to jump me. As he is jumping the battery the mechanic says “you know you ought to consider replacing that battery soon it’s getting kind of weak” – you would be very proud of me for not raining on his parade – its like you had the *@$% truck for a week, I spent $2,600, why didn’t you just put in a stinking battery???? But I just thanked him for getting me back on the road shook his hand and drove home happy and free.  Oh and after a call to Wells Fargo, I found out I have a $2,000 daily limit and without blowing a gasket nicely asked for it to be raised.

That being handled, we came home and got ready for a birthday dinner at Picasso’s with Albert, Jan, Will and Jessa.  We had a wonderful meal and a terrific time, but before we were done I was ready to fall into my plate!  Kat and I came home, sat on the couch for a bit and laughed about the day.  Needless to say the bed was a welcome respite, so much so that I slept until 3 the next afternoon – and if that wasn’t enough I was back in bed by 9.

Monday, Kat woke me up about noon with a phone call and I immediately went into a funk over all this sleeping.  I started second guessing the whole healing process and what I am going through, well it was short lived.  I called Carlene at the Center and right off the bat she is surprised at how good I sound and I launch into the yeah I sound good, but should I still be sleeping 12 hours a day?  Well, when she quit laughing, she told me she wouldn’t be surprised if I wasn’t sleeping more.  She told me that if was still consistently going on in 6 months we would have a chat, but even then the 12 hour night will often be in my repertoire.  Crisis abated  I worked on some woodturning stuff and got ready for our meeting that night.  It was good to see the crowd and begin to think about woodturning again.  I really miss being in the shop with the smells, the creating, the shavings and the feeling of accomplishment when a job is done.  It will come, but the warming days bring on the anticipation.

Today I got up at 6am for doctor appointments….wooohooo!  It was really good timing because I had Dr. Moy my the ENT and Dr Trish Andrews my dermatologist.  Dr Moy scoped me and checked my ears and found nothing out of the ordinary and several things on the good side.  He says that I am healing well and that I look terrific.  The staff each sat a minute with me and shared that they were all worried and wanted to call to check on me but were so happy that I am doing so well.  It was very humbling and brought tears to my eyes that in some way I have become a part of so many peoples lives through this journey.  I finished the day with Dr Trish who told me the ears, the pealing skin and all the other funky things happening to me are just unfortunate reactions due to having my body pumped with radiation and chemotherapy and that eventually it would all clear up – then she smiled as she froze 3 spots on the top of my head.  Pre-cancer from sun exposure so wear your hat and sunscreen.

All and all it has been four days that have become so familiar in my life and yours. So familiar that I don’t see the forest for the trees all the time.  I forget that day to day this is all about cancer.  Diagnosis, treatment, healing and hoping that we got it.  Food, sleep, ups, downs, people, places, regimes, pains, peeling, are just the things we do for a cure.  Birthdays, Christmas, New Year, love, family, friends, broken trucks, broken lathes, and jobs are the things we fight it for.  God continues to bless me with hope, help, love and understanding – wonderful friends to pick me up and help me fight – a family committed to the cure, and giving, loving wife to hold my hand and comfort me.  And that God of my understanding to guide me.  Thank you.

Don

LESSON OF THE DAY – “Faith ultimately can’t be argued; faith has to be felt.”

Steven Colbert

 

Day 37 – Birthday Boy

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Day 37 Happy Birthday to Me!

Happy birthday to me!  In my 63 years, yep you saw that right, I have never really gotten used to having my birthday so close to Christmas.  For me, by the time you get through December with all the Christmas parties, Christmas eve, Christmas day, New Years eve, New Year’s day the last thing that I want to do is celebrate again.  Then comes the whole “what do you want for your birthday?”  To be truthful, not much since Christmas was just 10 days ago and I told you Santa was kind to me.   To her credit Kathy does a pretty good job.  This year she gave me 4 new ear rings…..very cool – a gecko and sword for me and a “swirley dwerly” and lips for her.  Tomorrow night dinner with Jan and Albert?

I am not in a good spot if you can’t tell.  It’s not the

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Birthday Bling

birthday, it is just a bought of my January funk.  The winter before I left Kentucky I was standing at the door looking at the snow and I was crying.  Seasonal depressive disorder.  If it rains for a week, Kathy would prefer that I move to Jan’s than to deal with me.  I have been going down hill all this week and with a little help from Kathy put it all together today.  I was cruising, as as before, until I had a couple of mild setbacks. First the weather has been raining or freezing and I was not getting enough sun, and second my back started peeling and itching and my ear is doing something weird and oozy.  I have been so focused on my neck, I did not realize that my head was so dry.  I just need to ask God for serenity and pay more attention to it all.  It’s hard for me to fight the urge to be “normal.”  I did give myself a break with staying in out of the cold and did rest, but I just gave myself a pity party and I am OK with that, been through it too many times.  I’m getting way better about realizing it, and it doesn’t hurt that Kat knows when I am in it.  It is so much better than was.  God, therapy, and people that love me and ones that see me 7 days a week have taught me it’s okay, it is real and I can do something about it.

So I end a crappy cold week, rested, addressing my new conditions but best of all, ready to get back to it – a little older, a little wiser.  I have my 6 month appointment with my dermatologist and the follow-up with Dy Moy, the ENT that did my biopsies, on Tuesday, so I will buff up on what to expect with my skin and ears.  God, prayers, people and I am OK again.

Don

LESSON OF THE DAY – “Logic itself will not lead me to God, but my love of the world and my gratitude to it will.”   Steven Colbert

 

Day 31– 9 Radiations and 1 Chemo to Go!

 

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Day 31 179lbs

Another exhausting day, I keep waiting for an up one this week, but I am happy and pleased with where we are.  I feel pretty good, just tire very easily and getting through the needed things is taking up most of my day because the tasks seem to take more time and thought.  Kat went with me today for the meeting with Dr. Dagan and we rolled at 7am.  I got done with my radiation at 9 and weighed in for my appointment.  Did pretty good at 179 lbs and 123/73 on the blood pressure.  We met with Michelle today because Carlene is out sick and has been for 2 days.  She was very pleased with my progress and physical state.  I am still doing better than most.  Dr Dagan reported that the tumor at the base of the tongue is virtually gone and he very happy with the lymph nodes expecting the same.  He says that my throat is rough and ulcerated but is pleased that I have been able to make his job so easy.  He urged me to keep it up.  We were done by 10 so decided to hit the road and get some stuff done instead of hanging around for lunch even though it was being catered by Sticky Fingers.

We did it up kids, the bank, Walmart, Home Depot and Popeye’s for lunch.  I had beans and rice, and dreamed about how good Kat’s fried chicken tasted.  I seriously can’t wait until I get my taste buds back.  I watch Kat eat and just dream about how good it tastes, but I know it will happen and until then I will taste vicariously through her. We were back home by noon and napping by one.  Kat got up about 3 but I hung in until about 3:30.   Oh! the GasX is working – no more bubbles! What a relief.

Today’s task was figuring out benefits for next year – what a nightmare and of course Wells Fargo does all benefit communication on line, no local meetings.  Thank God for 15 years of HR, but quite frankly it has gotten very scary and confusing.  HRA, HSA, EIEIO…lol.  It took me almost 4 hours to get through it and in my shape that did it for tonight…brain dead.  We did get some great news today we have a new niece!  My brother Joe and his wife Nancy received their 9th grandchild.  Justin and Blair brought Campbell Pearl Phillips into the family last night at 10:30pm at 6lbs 11oz.  Congratulations I know she will be cherished and loved!

That’s it friends stick a fork in me I’m done tonight!  Thank you for the love, support and prayers they keep me strong and fighting and it is working.  Love you all and goodnight.  We will fight the good fight again tomorrow!

Don

LESSON OF THE DAY – Even on the hard days God gives us joy to pick us back up

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

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.