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! 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
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.
Excellent Adventure #856 DeLeon Springs
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:
Albert’s Birthday Present
Fun in the shop
Turned PVC Fence caps
Jessa’s birthday present
Dresser to entertainment center
Dresser to entertainment center
Kat at Top Golf for Jovie’s birthday
Fun with Finn
Albert turns 60!
Another amazing meal
Table and bench bases
We had a great weekend this weekend, Kat got motivated and cleaned the screens on the back porch
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.
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.
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
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
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
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
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.
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!
The last 4 years have been an amazing journey. Kat and I got married 3 years ago in a small ceremony with my Mom Charlene, brother Joe, my niece Sarah and Jan and Albert my sister and brother-in-law. We surprised everyone with a secret ceremony set up in advance with the help of the Staff at Treyton Oaks, the place my Mom lives. The family thought it was a tour until we went into the dining room and Brian Ebel, Joe and Mom’s minister, was standing in the room. Jan and Albert were transformed into the best man and maid of honor and the rest is history. It was a lavish affair with the rehearsal dinner held at White Castle, for you southerners that’s the northern version of Krystal, and an exciting afternoon of zip lining in the Mega Cavern. The cavern is an old underground limestone cavern that has about 15 mines of arteries under a suburb of the city – very cool! And dinner at Café Lou Lou provided by my long term brother and friend Coleman Hulette. Kat and I have explored, paddled, put on roofs, taken classes, raise children, laughed, cried, struggled and triumphed. God blessed me when he put this woman in my life.
Okay, so we left off at Labor Day. The following Tuesday the 3 of us sat with Doc Ilene and discussed the diagnosis and possible treatment and she was in agreement and hopeful. I felt pretty good until she ended the appointment with a flu shot to help protect me during treatment. The surgery with Dr. Moy was scheduled for Wednesday September 13th with a pre-op exam on that Friday the 8th.
Oh by the way….that was the weekend that a chick named Irma came to party! We spent Friday afternoon burning the burn piles from Matthew and getting the house ready for the storm. Jan and Albert had previously scheduled a trip to New York so we ended up with Finn the wonder dog and the three of us settled in for a stormy weekend. Finn is the ultimate ball chaser and we laughed our asses off Sunday as he chased the ball through 8 inches of rain!
Monday morning, we lost power about 2am and were awakened at 6 am by our Sister-In-Love Amy McCall and her husband Keoni Switzer. Their house off Halsema Road had flooded from McGirk’s creek and when they left the bathroom was 4 feet deep and the rest of the house was about a foot deep. They had their 4 dogs a great dane Kalua, golden doodle Koda, presa canario Lena and a pres -doodle mix, Tonka not to mention Lucy the pig! We ended up with another 7 inches of rain that night bringing the total to 15 inches. Monday Keoni and I spent the day moving 3 horses and a 700-pound pig to a dry farm and gathering up some of their belongings.
We ended the day bumming showers and handing off Finn to Will, Jan’s son to get him out of the kennel because we had no power and our house that means no water due to the well. It was a comical couple of days, Tuesday our friend and lawn guy Tony Twing, got power and gave us his generator to use and as a result didn’t lose the refrigerator and freezer. It was kinda nice being disconnected living on the patio with friends enjoying the sounds of nature if you
could ignore the hum of the generator. Phone calls were exchanged, friends checking on each other and help was given and received. It was heartwarming to see people coming together to help each other any way they could. Generators showed up, Keoni and Amy got loaned a 5th wheel, trees were cut up, animals sheltered, families fed, love and caring were shown by most. Kat and I are so blessed to be surrounded by a community of friends who truly care about each other.
Wednesday morning came before we knew it, so we packed up and headed to Jan’s to clean up before surgery. While we were there Dr. Terk called to check on me and to schedule a consultation after we got the results from the biopsy. The biopsy went well, hell I guess it did I was so whacked out I barely knew who I was! Dr. Moy took 20 biopsies from the tonsil area and base of the tongue. Afterwards, Kat dropped me off at my sister’s house, who had power, under the care of Will my nephew and Jessa his wife the nurse. Friends and neighbors, it only took one night under the influence of severe pain killers to bring me back to the reality of why I surrendered my right to consume alcohol 19 years ago. I wanted to drive, make drunk phone calls, and eat ramen noodles and peanut butter. I jabbered incessantly and probably drove Will and Jessa to drink! They did admit the next morning that I was pretty comical, but I don’t miss it one bit! Oh, and by the way I found out my wife was having me held hostage until we got power and she got things picked up because she knows me so much! Told you I love that girl!
LESSON OF THE DAY – Thank you is a perfect response, nothing else is needed.
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.
It’s a semi-true story
Believe it or not
I made up a few things
And there’s some I forgot.
But the life and the tellin’
Are both real to me
And they all run together and turn out to be
A semi-true story.
Jimmy Buffett – Semi-True Stories
Welcome back my old friends and hello to new ones. As you all carried me through wood school I need you by my side again!
Imagine my surprise when a healthy guy, other than having a year filled with some injuries and a bout of pneumonia, got a call from my Internist stating that she needed to see me that morning. You guessed it, CANCER! It was a shock to say the least, especially because at that time all we knew that it was in 3 lymph nodes on the left side of my neck. Dr. Ilene Levinson, from now referred to as Doc Ilene, is one of the most knowledgeable, compassionate, caring and intelligent internists that I have ever had the privilege of knowing and being treated by. She cares about her patients. She was by my side and directed the treatment of Sally for the last 10 years of her life and I have grown to love and respect her. As only she can do, she looked me in the eye and assured me that we have been through tougher battles and in the end, it would be ok.
So, let me catch you up, this all started in April when I had an accident in the shop. I know, ME AN ACCIDENT? I was cutting 4x4s on the table saw and had a kick back that hit me in the mouth causing a split lip and 4 loose teeth. 22 sutures later and a couple of dental visits I was good as new – or so I thought. The trauma left me physically down and susceptible to pneumonia that decided to attack in May. During the diagnosis stage Dr. Levinson and I noted some enlarged lymph nodes and she ran bloodwork to check them out. When I returned in June for a follow-up they were still enlarged so she ordered a sonogram. Good news – I wasn’t pregnant! But, no other definitive information. Next step was a biopsy in mid-August and diagnosis of metastatic squamous cell carcinoma in the left cervical lymph node with a P16 marker on Friday August 18th.
Well, after the initial shock wore off, Doc Ilene scheduled a PET scan for the next day and the journey began. She also texted and scheduled a consultation at MD Anderson with Dr. John Vu, medical oncologist. The PET scan showed 3 affected nodes and a confirmation was made that it was a cancer caused by the MPV virus, but no point of origin was seen.
Being faced with this dilemma I assembled the two women in my life that I could trust to be by side at every appointment and treatment and have the balls to tell me that I was wrong. Kathy Lynn, my rock, confidant, my supporter, my wife and best friend. Jan Carol, has been my closest friend since the age of 18 and my sister. I moved to Jacksonville because I needed to be close to her and her family. So, the three of us began this journey of education, frustration and a little bit of joy.
I want to share my journey with you guys because of the love and support that you showed me when I jumped ship and ran off to be a woodturner. It has been a bittersweet joy to talk to all of you who care so much, the outreach of callers has been humbling and I know that I am loved. At the end of the day, I just run out of time to call all of you. Please use this blog knowing I love each and every one of you and want to keep up with what is going on. I can only hope that the journey brings you the desire and strength to face your fears and move on with your life, no matter what that obstacle is. If I have learned nothing else in this life, it is that God is good and will provide for you – If you get the hell out of the way and let Him (or Her or It)! It may not always be what you think you want, but in the end, it will be better than your dreams.
LESSON OF THE DAY – God has a plan! It may not be what we dreamed about, but something wonderful is going to come from this journey