Diagnosis #4 Just Got Real

by GregP_WN

If you know Donna and I, you probably know my history about having had cancer three times over the last 32 years, and then being diagnosed again on December 3rd of this year with my fourth. Up until now we have been talking about it, looking at alternatives, all the possibilities. Can we do radiation again? If so it would be the third time, so that is almost impossible to do after all the damage I have from the first two.

Me Sweetie Maine

Chemo is another tool, but again, not for me. Chemo only works on this type of cancer when it can be combined with radiation over the course of seven weeks. So that's out too. The radiation oncologist had a lovely story to tell us yesterday about one of the dangers of applying radiation to the neck of a person that has already had radiation there, it's a carotid artery blowing up from being weakened. Great.

Me And Donna

So, surgery will be one lone tool used to fight this fourth diagnosis, this one is hypopharyngeal cancer. I received the phone call today that we've been waiting for, to get a date for when this surgery would be done. I have been referred to two different departments of oncology at Vanderbilt since I received the initial diagnosis while they were trying to find a way around this surgery.

Please Help The Doctor Call Me Back

While I've been anxiously waiting for the call, and I've even called the scheduling clerk at my oncologist's office to ask why it's taking so long, when it finally came today this diagnosis became real. No more talking about the options, there are none, no more going on about daily life like nothing was wrong, in just a few weeks things will quickly go from being normal to trying to survive an extremely serious surgery to remove cancer out of my throat. I will then be in the hospital ICU for anywhere from a week to a month, depending on how fast my poor radiated, fried, and tired old body can heal. I have had flashbacks to the surgery and recovery 11 years ago for my last diagnosis. It was brutal. The hardest thing to recover from that I've ever had done in these 32 years of dealing with cancer and all of its "gifts". And now, our oncologist tells me that this is a much worse surgery to recover from. Great! Fun times!

The previous radiation I had may have helped to save my life 32 years, and 11 years ago, and be the reason for having to go through this diagnosis now. While radiation kills of the fastest growing cells in the field it is being applied to, which is usually cancer cells, it also does collateral damage. I have a list of radiation side effects for head and neck cancer and I am pretty sure I have all of them. As time goes by, some of these get worse, body parts start to surrender to the damage that was done 11 years ago but only now showing up. I often say that my poor old body is like a 32 Buick that needs repairing but you can't get parts for it. 

Hug Me I'm Radioactive

Our oncologist is confident that surgery will take care of this cancer. But there's that "what if" lurking around the corner. There are over 12,000 people each year that are diagnosed with this type of cancer, so I have company in the diagnosis. Over 3,000 of those people diagnosed with this type of cancer don't make it through the first year. The five year survival rate is from 80% to as low as 30%, depending on the stage at diagnosis. Luckily, I am on the good side of this one, I am stage I. Yeah, it's getting real.

After surgery I will not be able to talk as my larynx will be removed, that includes the vocal cords. So all of you that have loved to hear me sing won't be able to enjoy that any longer. Our oncologist will do a second surgery after I have recovered from this one to install a set of"prosthetic vocal cords" This is supposed to allow me to speak again, although in a much different voice and I'm sure will sound more like a machine or robot. If this prosthetic device doesn't work, 20 to 30% fail, then I will still be able to communicate with a hand held device that makes you sound sort of like R2D2. But hey, Star Wars is back so I will fit right in. 

As hard to take as being told you have cancer for the fourth time, the unknown is worse. How will this affect other facets of daily life like eating, breathing, bathing? The trachea is re-routed and surfaces just at the bottom of the neck. Most people have seen someone that has had this done before I'm sure. Those that have had this surgery are referred to as "neck breathers", because of having this hole in their throat. This alone is a life changing procedure. Eating is supposed to continue as it has been, unless you have damage from radiation which I do, and more scar tissue and damage from this upcoming surgery. So how that will work is a guess at this point. I have been told that I will have a feeding tube for some time. 

Donna

Working is a whole other thing too. People that are diagnosed with this and have this surgery are immediately considered "disabled". I've never been able to look at myself and consider me "disabled". That might change now.

So, for the next four weeks we will continue on with life as it is now while preparing for the biggest life change we've had so far. We have an appointment in two weeks for a pre-op orientation and with speech pathology to get a crash course in how to care for my neck, and stoma, how to eat, what to do and not do, and an explanation of how I will eventually start trying to speak again. 

One of the bonuses of knowing that cancer treatments/surgery/recovery is coming up is that I get to pig out on anything I want to without worry about gaining weight. In fact, I am consciously trying to gain weight, as much as I can for the next few weeks. Because in each of the previous three diagnoses I have lost 45 to 50 pounds. I try to head that off a little by packing it on like a fat bear getting ready for Winter.

This is going to be a tough one, but I don't plan on going down without a big fight. I can't help but think that one of these diagnoses is going to get me. I'm either the luckiest guy you know, because so far I have survived four cancer diagnoses, and one small stroke. Or, I'm the UNluckiest guy you know, because I've had cancer four times, and one stroke. It depends on the view from where you are standing.

Getting this diagnosis has made me contemplate my mortality. Will I dodge it again? Is this it? I have too many things left to do. I've been listening closely to Tim McGraw's song "Live Like You Were Dying" lately. It reminds me that we need to enjoy life, wherever you are in it, each day, make the most of it, and try not to complain about those "little things" that you think are really big things.....they're not. Another way of saying this is a motto we have at WhatNext we like to say "Live Your Life......Not Your Cancer.

Why You Should Live Like You Were Dying If You Have Cancer

I'm not planning on going sky diving, or mountain climbing, and I damn sure don't want to go find a bull name FuManChu, but I hope to enjoy everything I lay my eyes on for the next month. And then, hopefully for a few more years. Only time will tell. 

Another thing I have going for me is my Sweetie. Donna has been dealing with cancer from the other side for just as long as I've been dealing with it from this side. I was 28 when I was first diagnosed and we had only been married for 8 years. People tell me that it's just not fair that I've been diagnosed again. Maybe, but it's damn for sure not fair to her. She has cancer by association. Another thing that those of us that have been dealing with cancer say.....When one person in the family gets cancer, the whole family gets cancer.  That's a truth.  I couldn't get through it without her. This is going to be a tough one, so if you see her and she looks a little ragged it will be from taking care of me. I love you sweetie!

Many people have asked how they might help Donna and I through this. I will say that this 4th cancer diagnosis and major impending surgery has humbled me deeply. We have always been the ones that have helped others. We have been very active in Relay For Life, I am a Voice of Hope Speaker for the American Cancer Society's "Voice of Hope" program. We have had a Company Relay Team for each of the last 10 years except 2019.

Now, we find ourselves on the other side looking out. I will be deemed 100% disabled according to my oncologist and others that have already been through this before me. I am in the landscaping business and will not be able to perform those chores any longer.

So, my Sister-In-Law started a Go-Fund-Me account to try to offset some of the massive medical bills that will follow. We are fortunate enough to have enough insurance to get me in the hospital and surgery done, but about half of the bill is all that gets covered. Below is a link to that fundraiser for those that have asked. Thank you for your support.

See Fundraiser Page Here

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