Week 3 - Holy Phuc!

Tuesday, April 30, 2019

Consult with Radiation Oncologist. I don’t place a lot of weight on first impressions. I’ve always felt that I don’t necessarily make great first impressions but if given a chance over time I’m very comfortable and confident  that I do good work and am respected by those that gave me the chance. (I think it’s an introvert thing…)

My first impression of the oncologist was encouraging. He’s probably about my age, maybe a couple of years younger. He seems to wear a permanent grin, probably an amazing skill that even when delivering crushing news, it doesn’t seem as bad because of his smile. He reminds me of the comedian Norm Macdonald, in a good way.

He got right to the point and delivered exactly the words I didn’t realize I needed hear, “What you have is curable.”

After taking in the words for a few seconds and letting an incredible amount of relief and fear switch places, I responded, “You’re the first one in two weeks to tell me that.” Again, comparing his delivery to the ENT, nothing to dissect here, “what you have is curable.”

He explained the 2 paths of treatment and that I would be deciding which to take. Although I had read up some on the possibilities, the decision became clear and easy while sitting in his exam room.

Option 1: 7 weeks of treatment. Radiation 5x per week, Chemotherapy 1x per week.

Option 2: Surgery and 6 weeks of radiation. The Surgery is a newer approach called TORS (TransOral Robotic Surgery). It involves a 3D camera and robotic tools to remove the tumor. This is followed up with radiation. One catch however, if the surgery does not produce “clean/clear margins,” meaning in simplest terms, there is confirmation that ALL of the tumor was successfully removed, chemo therapy would also be needed.

The cure rate is the same for either option. I may have misunderstood but it was also mentioned that the surgery involved “trials” which I took to mean that it was still in its infancy and not necessarily a fully vetted process.

I need to address two things here. First, I may be completely wrong about the previous statement regarding “TORS” and “trials.” I am merely reporting what I thought I heard and what my thought process and emotions were at the time. Second, given my current prognosis, I want to receive treatment that has as sure a track record as I can get. I actually felt a little guilty about this because in the past I was always impressed by patients who enrolled in clinical trials to help with improving research and here I am stating unequivocally I want no part of that. Rationally however, I am not at a stage where that is necessarily something I need to be considering. I chose Option 1.

Let’s talk about staging too. The oncologist informed me that I have Stage 1 Throat Cancer. He also shared, incredibly, to me anyway, up until this past January, I would have been classified as Stage 3 because of the fact that there is an identifiable tumor and it has spread to 1 lymph node. However, upon further review, this type of throat cancer was “re-staged” because it was being cured at a much higher rate than originally expected. He further explained that people who have this cancer in 2 lymph nodes are now considered Stage 2, previously Stage 4. ENCOURAGED is definitely in the lead again.

Wednesday, May 1, 2019

Up until now, the majority of the tests and discussion has been trying to zero in on the primary site, knowing that the lymph node must be dealt with also. Today the thyroid would be addressed. I had an ultrasound done on my throat. Ultrasounds are not invasive, involve warm gel and a handheld device that delivers pictures of what’s inside you. Although I couldn’t see the monitor the technician was using I was a little concerned about the number of pictures she was capturing, but not being an expert in this field I had no basis to be concerned or confident. The procedure lasted about 15 minutes and I was on my way home.

Thursday, May 2, 2019

Today is another day I shall never forget. I was scheduled to have a “mask” made that I would need to wear during radiation treatments.

Back on April 25^th, prior to meeting with the oncologist, we met with the oncology nurse. She did a patient intake, gave us some literature on head and neck cancer, explained a little bit about radiation, should I need it…She also briefly mentioned a mask that patients wear to keep their head immobilized during treatment. She reached up on the shelf above her and pulled out a white mesh “mask” that looked to be similar to what a fencer might wear during competition. Really it was even smaller than that. It was so small in fact I made very little note of her mentioning it.

When I arrived for the mask fitting appointment, the oncologist met me in the waiting area and sat down and discussed the previous day’s ultrasound. He was happy to report that although there were cysts on my thyroid and some on my voice box, none were of concern. I paraphrased it as, “You mean I don’t have thyroid cancer on top of whatever other cancer I already have? That’s great.”

We discussed where we were in the process of seeking any more consults, including my dentist, and that things were moving along. We moved on to a room with a CT scan type machine and I got down on its table. I rested my head back against a memory foam pillow, for lack of a better term, and allowed my head to sink into it. I mentioned to the technician that this was really comfortable and could use one at home. We laughed, she said she could arrange for that, haha, and carried on.

After she was satisfied with the condition of the foam around my head, she approached me with a white hard plastic sheet of mesh, approximately 2’ x 2’. She explained that she was going to soak it in warm water to soften it up and then press it down over my head, face, throat, and shoulders. It would be warm and soft and would gradually harden into shape over several minutes.

Additionally I had to bite down over a piece of wax so that the metal filling I had in the back of my mouth would not affect the radiation. Apparently when the radiation beams strike metal they tend to scatter and can cause thrush, awesome.

When it was ready, she returned to me and pressed the plastic over me as she had explained. IN ADDITION, I COULD FEEL HER CLAMPING THE EDGES OF THE MASK DOWN TO THE TABLE, AROUND MY HEAD, NECK AND SHOULDERS.

HOLY F**K!!!!!!!!

I was now locked down to the table under this thing that was so “form-fitting” I could barely open my eyes because my lashes were getting stuck in the mesh. Because of the wax I was biting down on I could barely open my mouth for breathing. Although I’ve never done any formal meditation, I have taught myself how to deal with extreme situations like this and I simply closed my eyes and breathed slowly through my nose and waited it out. But again, HOLY F**K!!!!!!!

The tech went about her business, at one point informed me she would be back in a few minutes, giggled, “I know you can’t talk very well but are you doing OK?”

“Mmmm mmmh.” I really just continued to “meditate” knowing it would be over reasonably soon.

She left the room, came back a few minutes later, touched the mask and said, “Still needs a few minutes. Still doing OK?”

“Mmmmm mmmmmh.”

Finally she began unbuckling the mask from the table. By now the little fencing mask was a distant memory, but my first words to her when I was free were, 
“Do you ever have anyone FREAK OUT during that process?”

“All the time,” she chuckled.

“What do you do for them?”

“We try meds and if that doesn’t work we can cut some parts of the mask open but we really don’t like to because it compromises the mask the more you remove.”

“OK, fair enough. How many minutes was I just under it for?”

“About 25 minutes. The actual radiation treatments are only about 10-12 minutes.”

"OK, I think I’ll be fine.” In my head, again, HOLY F**K!!!!!

As I sat up on the table I got my first look at the mask. I will post a picture when I’m able but my first impression was, this is what they must do when they create a bust for the NFL Hall of Fame in Canton. Fencing mask my ass, this thing is the beginning of a life-size mannequin of me, from the shoulders up. It STANDS up on its own on the counter.

After that experience I met with the oncology nurse again for more information about self-care during treatment; foods, oral hygiene, depression. Unfortunately I forgot about the fencing mask incident or I would have asked her about it. I noticed during her “orientation” to radiation treatment that I was on information overload. It was one of the few information appointments so far that my wife did not attend but now wish she had. Thankfully most of what she explained was in the documentation she gave me so it’s just a matter of reading through the information.

From there I was handed off to a chemotherapy nurse who was going to check the status of my veins “in case” I need chemo. I said I was getting it but he said he’s not allowed to tell me that and can’t say it, only the doctor can tell me. He brought over someone to check my veins and although I usually do very well with blood draws, etc., they explained this was different. They use smaller veins for the chemo and I will need to be well hydrated when the time comes. Stay tuned. He joked that I should drink a bottle of water and eat a bag of chips the night before. When I said I could do that no problem, he said, “Except you won’t be able to eat the bag of chips…”

It was the first realization that, “Oh yeah, things are going to be different probably beyond anything I can imagine right now.”

Friday, May 3, 2019

Phone interview with nurse prior to biopsy scheduled for May 9. The call came about 30 minutes sooner than scheduled. The voice at the other end of the line sounded like an old friend.

“John, Hi it’s Laura from Salem Hospital.”

“Hi Laura,”

“John, the first thing I want to tell you is my brother in law is a year younger than you and  a year ago he went through the same thing you're about to.”

Whenever anyone has mentioned a similar case to mine, my immediate question naturally, spoken with some trepidation, “And how is he doing today?”

“He’s perfectly fine. He’s back to his old self except for one thing; he said he’s not going to sweat the small stuff anymore.”

From there we went on talking for about 30 minutes. In between the interview questions she provided me with little tips and reassurance that although things were going to be unpleasant at times, in the end I’d be OK. Thanks Laura, I may never meet you other than this phone call but I will always remember you friend.