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!

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.   

Here We Go Again!

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 tog
ether and turn out to be
A semi-true story.

Jimmy Buffett – Semi-True Stories

 

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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.

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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