The Countdown Continues…….


The last tests have been done, targeting and restraint are complete. I have added some pictures of the CT targeting and the behemoth that will irradiate me and hopefully, give me superpowers. With my luck it’ll turn out to be something like PAPERCLIP MAN, only using his powers for good, he can sort and untangle multiple boxes of paperclips in the matter seconds.  Yeah, sounds about right.

The last major step was to have a gastric feeding tube inserted through my abdomen wall, so I can feed myself and hydrate once the radiation causes my throat to swell to the point that taking food orally will be unpleasant, oh, and not to mention the taste.  I’m told after the first round of chemo and a few doses of radiation your taste buds go south and everything taste like metal/copper.

The tube so far hasn’t been too much of a problem. Getting it put in was.  Well, getting the procedure done was straightforward, get an IV, get a few drugs via said IV, relax, fall asleep and wake up with a hole in your stomach. The downside is I had to remain in the hospital overnight for observation. There are a few truths about a hospital stay and the first truth is you will get no rest or sleep. It’s like they watch you and just when you appear to doze off…. BAM the door opens and the room floods with light and a meek healthcare worker says “oh, sorry, I can come back later”. I guess they take observation very seriously.

Getting out of the hospital is the real test of your goodwill to all. Everyone agrees you are ready to be discharged, wound looks great, vitals are good and last round of blood work is fine.  All that is missing is the Doctor, the hospital-based doctor who has never heard of you until they got to the floor.  In my case, she came in and I had to explain why I was there and the procedure I had.   I also explain that I have a class scheduled for Tuesday to show me how to use and take care of the feeding tube. Well, she says that before I am discharged I must watch videos and have a nurse demonstrate the thing by pushing 210 cc’s of Ensure into my stomach and wait two hours to see if I get nauseous.  WHAT???  Are You Kidding me?  The nurses are all rolling their eyes and shaking their heads.  A plan is hatched.  My nurse says, let me see what I can do.  He comes back and announces they don’t have Ensure and gives Laura and I a wink.  The doctor comes back and asks how everything went. All good we reply in unison. I’m gone in 15 minutes and the whole ordeal took 3.5 hours.

Fast forward to Tuesday and my last appointments.  First, a baseline hearing test, no problems there. Just a confirmation that I’m deaf as a post. Seems the cisplatin (chemo) can cause hearing loss.  Next, my CT simulation re-do and confirm the lineup, fit of the cage and the final Okie Dokie from the Oncologist.  Here are a few pictures of the “cage”.  It is made of plastic that is heated then stretched over my head and shoulders and left to cool. Trust me, it sucked, and I will have to wear it every time I have a radiation treatment.  If you look closely, you can see a plastic stick coming out of my mouth. This a mouth block meant to fill space inside my mouth and keep my jaw muscles flexible.

In the picture, you’ll notice a blue plate with black & grey dots on it.  This is the means by which they keep me from running away and scaring the villagers.  It has 10 or 12 “bolts” that fasten to the table. It allows for NO motion in the mask.  I still haven’t quite come to terms with this yet…sedation, please!

Why Would I share Such a personal thing……

Why Would I share Such a personal thing……

I was asked the question recently, “why in the hell would you share such personal information on the web? “ I guess that’s a fair question.
In many ways, I am a very private person and in other areas, I’m not. I have always admired a person that can talk about something awful and troubling in their life with a friend. It has taken me many long years and a lot of introspection to be able to talk about things I may be uncomfortable with. I found out many years ago that talking about things can take the sting and venom out of a bad experience. In my life, I’ve had the misfortune to have experienced some awful things, things that keep you up at night and affect the way you deal with others and life. Talking about these things have allowed me to let go of some of the ghosts that come from holding in bad things. Yes, I’m talking about “therapy”. However, therapy takes many forms. There are the Doctors and the couch and “how do feel about that”, but what does me the most good is talking to a trusted friend and sifting through the ashes of bad decisions and the bumps in life’s road. I’m lucky to have a few very good friends and a lot of good friends who are for the most part just as out of kilter as I am, so we get one another.
That is sort of what this blog is. What it is not is, a baring of my soul, a pity party, a chance to pass my baggage off to you or a “how to” story. This is me working through a very scary part of my life and writing this down helps me keep the fact I have cancer and the only way to beat it is to fight it and keep it in the front of my mind until every shred of this insidious killer disease has left my body.
Yes, this a very personal journey, one you may not want to follow. That’s fine. I get it. If you want to come along, I’m grateful. All I ask for is honest feedback and your support.
I have been reading several blogs lately written by folks that are battling various forms of cancer or have beaten it and a few who have lost the race and are making the most of their time left. All these blogs have different purposes. Some are Snake Oil salesmen with all the remedies and answers. Some are touting new age techniques of crystals and herbs. Most are like mine, describing a journey and are trying to see around that next corner. They all have their purpose to the authors and I wish them all the best of luck and I hope they get what they are looking to get from the experience.
I don’t know what where this blog will go. I do know that I’m going to follow it to the end. Documenting the course I will follow and fighting it tooth and nail.
As I mentioned in my initial emails, if you’re here that means I consider you a member of my family or extended family. Some of you have known me all my life, some only a few years. Some linked to me by blood, some by shared philosophies and some are linked by hydraulic fluid, jet fuel, and salt water. No matter the link or connection you are a part of my life.
I suspect I over-answered the question as usual.

Here is the bottom line as of 10-07-2018

Squamous Cell Carcinoma of the Throat

The tumor is 5 CM and Stage II

Treatment starts 10-29-2018 (my choice)(no change)

Thanks for reading and I hope to see you here again.

My Current Journey Started with A Cancer Diagnosis…….


I have known many people that have had cancer, some died from it and others survived it.  Cancer has never hit too close to home until now.  I have cancer.  Just the words generate a feeling that is impossible for me to describe.  Fear, panic, worry, anger, resentment, and variations of all wrapped up in a chaotic ball is as close as I can come to what I feel since my diagnosis.

I’ll start at the beginning.  Sometime in late August 2018 I was using a 6-foot USB micro Endo-scope for some electronics work I was doing with my radios and after I was done, boys being boys, I decided to check out my ear canals.  All clear there. Next, let’s see about my dental work, Very nice.  How are my tonsils doing?  Hmm, that doesn’t look right.  I see a pickle-shaped thing with what looks like blisters all over it.  A chill ran through me, not thinking cancer but knowing that that is not right and looks like a problem.  The endoscope has a camera function, so I click a few pictures and email them to my doctor and ask what she thinks of this development.  I got an almost immediate response.  A call from her nurse to get my butt into her office the following week.  This was the Friday of Labor weekend, so I have to wait 4 days + 1 to see the good doctor.  Time to fret and worry.  Sure put a damper on the holiday.  My wife and I had several discussions over the next few days, talking about several possibilities including cancer.

The following week I drive down to see the doc.  She looks down my throat and gives me that well practiced “Umhmm”. She tells me to wait here and she disappears and returns 5 minutes later and tells me to trot over to Ear, Nose & Throat let them look at this thing.  The ENT doc has me sit in a fancy chair with cameras and all sorts of probe type instruments.  She takes one look down my throat and says, “that definitely look like cancer”.  I asked if she planned to biopsy it to be sure, a few squirts of throat numbing, and the samples were off to the lab.

Fast forward a few days, the phone call with the now not surprising news, its’ cancer, Squamous Cell Carcinoma of the throat.  Doc thinks it is Stage III but can’t tell for sure until an MRI or CT scan is done.

My normally sedate life suddenly becomes an endless string of doctor and lab appointments.

CT, MRI and a Pet scan and I meet my team. My cancer team consists of seven doctors and 3 other disciplines, Dietitian, Speech & Swallowing therapist and a gastric nurse.  This took the best part of 6 hours with one after another coming and going.

Originally, I was told they would remove the tumor and radiate the area. No Chemo!! Woo Hoo! That was short-lived, the surgeon tells me that due to its size he would rather let radiation and Chemo have the first whack at it.  Boohoo.

Most all preparations are in place to start treatment all that is left is the “targeting and tattoo” portion so they can hit the same place over and over to reduce the collateral damage.  Oh, and the mask that bolts my head to the table……….

My wife is a saint.  She has taken the role of Angel in waiting. She has kept me up and encourages me to stay positive and in the moment.  She pushed me back to my meditation and prayers. They say the support and mind-body are the largest part to successful treatment.  I knew this but have evolved away from it.  It feels good to return to it.

Next step is to have a gastric feeding tube inserted. The reason is to ensure that during radiation as my throat swells from the treatment I can still get hydration and nutrition via the feeding tube that is mounted on my stomach.  Think meal supplements like Ensure and other high-calorie liquid meal replacements.

Interesting note: the tumor is a P-16 HPV positive tumor. More here.

The treatment is what they call a 35/3.  35 doses of radiation and 3 rounds of Chemo.  The first chemo starts the same day as radiation.

I will try to update this blog every week to keep any interested parties up to date.

Here is the bottom line as of 10-04-2018

Squamous Cell Carcinoma of the Throat

The tumor is 5 CM and Stage II

Treatment starts 10-29-2018 (my choice)