Week 5 - Who's Your Hero?

Monday, May 13, 2019

Today begins the last week of preparing for treatment. Tests have been completed, most results are in, most of the plan is in place. I spoke with the radiation oncologist about the feeding tube. He’ll put in the order and I’ll get a call to schedule it. The only thing I have today is a consult with a periodontist leftover from better days when my only concern was a receding gum on one specific tooth. My how times have changed.

The doctors and dentist all agreed I should keep the appointment as it wouldn’t hurt to have another oral health professional take a look around. I arrived early and was seen promptly by the doctor. As I shared my situation I noticed the office manager was hovering in the doorway listening in. The doctor took a look around, we talked about dry mouth and saliva glands and the importance of staying on top of my oral health. He assured me that my gum issue was not critical and when I’m cleared for dental work by the doctors we could revisit, whether that be in 6 months or even a year. He said the tooth was not going anywhere and not to worry about it. We shook hands and he wished me luck.

I probably wouldn’t even have included this appointment anecdote except for what happened next. The doctor left the room and I was getting up from the chair when the office manager returned. She handed me two small bottles of dry mouth oral rinse. She said take these with you, you can also buy them in stores of you like them. I thanked her and left. In such a short time into this journey, I have come across countless generous individuals who are sharing information, support, and in this case, products that may help me along the way.

Tuesday, May 14 and Wednesday, May 15, 2019

No appointments but Friday is the dry run for the radiation so the whole mask lockdown is getting very real. I spent some time each day strategizing my approach to the treatment and trying to gauge whether I could pull off the whole “embracing it” concept. While I still felt OK with embracing it, another thought came to mind. I wonder if I would be allowed to listen to music during the treatment. That would really settle things down for me.

I was still relatively young during the Woodstock era but having an older brother who greatly influenced my taste in music, the music of the 60’s and 70’s are my go to tunes. (I would be remiss here if I didn’t include that he also pushed Frank Sinatra onto my music radar, though technically Ol’ Blue Eyes was certainly very relevant well beyond the 70’s.)

My brother’s influence on my introduction to music dates back to the 1960’s and his taking piano lessons and me wanting to do the same. The piano lessons experience is an entire chapter unto itself so let’s fast forward to the present. I have a very nice electronic keyboard that I don’t play nearly enough but I really do find comfort in music, both playing and listening. So now I’ll ask about listening to music during radiation. If I can get that, I think I’ll be golden.

Thursday, May 16, 2019

Morning appointment with ENT, follow-up to last week’s biopsy procedure. This is now the 3^rd location I’ve encountered my ENT, this time at a satellite office location. We were probably his first appointment and were seen right away. He examined my tongue and pronounced my healing was going fine, despite my thought that when I had sneezed mightily a few times during the week it felt as though any healing had been compromised by what felt like a ripping sensation in the biopsy spot.

He showed me the lab results of the biopsy which indicated it is “extremely likely” this is a cancer caused by HPV and is being seen more frequently in otherwise healthy males over the age of 40. The HPV could be present for as long as 10-30 years and if the body’s immune system does not eradicate it, it can turn onto cancer. More than one doctor has told me I’m the text book case for this these days. My response has been, “I’d rather be the text book case for a disease with a known effective treatment than have them call colleagues after I leave and say, ‘You won’t believe what I saw today!’”

We discussed again the surgery possibility but only in that he agreed it was not a good idea to attempt it in my case as the results could be disastrous. He shared that he is treating some older patients that went the surgery route and, while still walking this earth, they cannot eat or swallow properly so they permanently and exclusively get their food through a feeding tube.

This is where the irony for the week begins. We discussed the importance of keeping a high calorie intake, no matter how it needs to happen, orally or through the feeding tube.

He said, “While nearly everyone is trying to lose weight, we need you to gain weight right now.”

I let him know I was a bit concerned that I have lost about 5-6 pounds since this ordeal began but I chalk it up to my metabolism and how I get this way when stressed.

With a surprised look he said, “You mean you’re not a stress eater like the rest of us?”

“No, I’m a stress non-eater.”

Woody Allen captured this “condition” perfectly in Annie Hall. It is one of my favorite movies and this scene is one of the many reasons why. On their first date, Alvy (Woody Allen), and Annie (Diane Keaton) leave the movie theater and are walking down the street. The last line sums it up:

They stop in the middle of the sidewalk. Alvy turns Annie around to face him.

ALVY: Hey, listen, listen.

ANNIE: What?

ALVY: Gimme a kiss.

ANNIE: Really?

ALVY: Yeah, why not, because we're just gonna go home later, right?

ANNIE: Yeah.

ALVY: And-and uh, there's gonna be all that tension. You know, we never kissed before and I'll never know when to make the right move or anything. So we'll kiss now, we'll get it over with and then we'll go eat. Okay?

ANNIE: Oh, all right.

ALVY: And we'll digest our food better.

ANNIE: Okay.

ALVY: Okay?

ANNIE: Yeah.

They kiss.

ALVY: So now we can digest our food. 

And there you have it, a glimpse into the life of a stress non-eater. And that’s the first irony for this week. Now that we know what we’re facing, my main pressing concern is to gain weight while I’m able, but when stressed I can’t eat, plus the treatment is going to greatly reduce my interest in eating. Catch 22? Endless loop? This is going to get very interesting in a few weeks.

The appointment ended on a positive note with the doctor saying, “Ok, we know where we’re at. Let’s zap this thing, close this chapter and get on with your life, and try to put on a couple of pounds for when I see you next in 6 weeks.”

So virtually all of the i’s have been dotted and t’s have been crossed. Areas to treat have been identified, type is identified, and the treatment plan is in place. As strange as it feels to say this, I’ve been chomping at the bit for treatment to start, the sooner we start, the sooner it’s over.

Friday, May 17, 2019

Today begins a streak of 36 straight non-holiday weekdays of lying on a table clamped down to it for 10-15 minutes. No radiation today, they call it a dry run. They make sure the mask fits and everything lines up on the machine.

As I entered the room, I told the techs I had two questions: Could I get a picture of the mask, and is it possible to listen to music during the treatment? The answers were yes and yes! The woman that made the mask last week took a couple of pictures of me on the table.

More important to me was the music conversation. I wasn’t sure what they had in mind but as I got near the table she said, “We have music on now but we can change it. Not sure what you want to hear, classic rock OK?”

I said, “Classic rock would be fine.”

The other tech in the room said, “I’m not sure that Guns ‘n’ Roses is classic rock.”

“No, I don’t think so. My son would like that but I’m not a big fan,” I said.

The woman added, “We have Siruis XM if there’s something on there you like.”

With no hesitation I said, “The Grateful Dead station.”

She yelled to the 3rd tech in the control area, “Joe, he wants to hear the Grateful Dead.”

I’m guessing Joe is about my age and quite possibly a Deadhead himself as in less than 2 seconds “Playing in the Band” was blaring through the overhead speakers. He clearly knew about the Grateful Dead station on Sirius XM satellite radio. Things are definitely heading in the right direction on this long, strange trip.

As I was being bolted to the table I noticed the mask was a little tighter than when it had been fitted last week, which is something the techs had warned me about. I fidgeted a little bit and said although it didn’t hurt, the throat section of the mask felt a little constricting. She told me to try tilting my chin slightly, I did and that cleared up the issue. They explained how they were going to be taking some x-rays, etc., by now I was just focused on “Playing in the Band” which had moved from the chorus into an instrumental which I was very familiar with and knew would last well beyond my time on the table.

In what seemed like a very short amount of time, the techs returned to the room and released me from the mask. The tech told me she entered the Grateful Dead on my chart and the other tech said they each had their own Siruis subscriptions so when I come in everyday just tell them I wanted to hear the Dead on Sirius.

I told them the irony of the Grateful Dead selection. This past Christmas, my son gave me tickets to the Dead concert at Gillette Stadium coming up on June 22. I’d been looking forward to it ever since. Sadly, last week I told him he should sell the tickets because it was becoming clear I would probably not be in any condition to attend a concert in late June. With this new development of music during treatment, I’ll be listening to the Dead daily over the next 7 weeks, defeating the anxiety about the mask. I joked with the techs that since it was the Dead, I probably wouldn’t ever hear an entire song on any one visit but as a good friend pointed out, “lots of great metaphors and imagery and memories to get lost in.” Exactly. This was big folks and here’s why:

Nice huh? And I just noticed, duct tape really is used on everything, like Frank’s Hot Sauce. 35 days and counting.

I may not be the typical patient, who knows if any of us are “typical” when it comes to this, but had the music possibility been put on the table, so to speak, from the beginning, it would have saved a lot of unnecessary anxiety on my part. Again, just sayin’. Another teachable moment for the professionals. I also made the point of telling the techs they need to supply the radiation oncology nurse with a more accurate version of the mask so she stops showing that little fencing mask to new patients. I think I’ll follow up on that one.

As I left the radiation area, the other tech shook my hand and said, “When you come in every day, just remind me about playing the Dead and I’ll get it right on for you.” I’m not stating anything unique here, everyone that I know who has dealt with this disease has said the people that treated them were all incredibly nice. I definitely concur.

From radiation, I went on to an informational appointment with the chemo nurse. I had met him briefly the week before. This time we went into his office and we just hit it off. Again the whole first impression thing is highly overrated in my opinion. I mentioned the Red Sox and how in my family we were raised on 3 principles, God, family and Ted Williams, though not necessarily in that order. He said he wasn’t a big baseball fan but his family upbringing was similar except substitute Bobby Orr for Ted Williams.

I said, “Bobby Orr?” and removed my glasses. “Notice a resemblance?”

He looked at me closely and the recognition on his face became visible. “I do see a resemblance, wow!”

I went on to explain that although Ted Williams was my father’s hero, mine was Robert Gordon Orr, there’s not a close second. As Ted Williams was the greatest hitter to ever live, Bobby Orr was the greatest hockey player of all time. From the age of 10, when Orr and the Big, Bad Bruins were on the eve of winning their first Stanley Cup in my lifetime, I began hearing more and more people say, “You look like Bobby Orr.” To a 10-year-old growing up on the outskirts of Boston, there was no greater compliment. I couldn’t skate or play hockey like him, looking like him was fine with me. Though I've never met him, I have a 3rd grade picture that someone gave to Orr back in the early 70's and he signed it. Yes, I have his autograph on a picture of me, not him. Thankfully I also have another signed picture, the one of his iconic goal from May 10, 1970. To this day resembling Bobby Orr is a cross I have to bear.

Our mutual affection for Orr aside, we conversed comfortably about hockey, family, living on the North Shore and oh yeah, the side effects of chemotherapy. There wasn’t really any new information from what we were told on the previous Friday in Boston, though he reiterated several times that there has been great strides made on the reduction of vomiting during chemo treatment. He said if there hadn’t been he wouldn’t still be in the field; vomiting is the one thing that he can’t handle in his role as an RN in medical oncology. I’m not a big fan of vomiting either so I agree, this is a good thing.

I asked a few questions about some advice and recommendations for products I’ve been receiving and he told me that family and friends will be coming out of the woodwork with things they’ve heard of. He said while well-intentioned, their suggestions are anecdotal and the advice from the medical professionals is evidence-based. He said if there are any recommendations I’m considering to keep the medical professionals in the loop. I thought that was fair. He didn’t say to disregard suggestions, just make sure they’re discussed with the folks providing my treatment. He even went on to say he would recommend I consider acupuncture as an alternative therapy. He said there is data to show that it can help with the long term side effect of dry mouth, something to do with improving the effectiveness of the saliva gland, in my case on the left side, which will be mostly destroyed by radiation, definitely worth looking into.

It seems he will be my main contact if I’m ever not feeling well and I’m not on site. In addition, he became an immediate patient advocate for me. When he realized I was scheduled to go to Boston to have the feeding tube put in, he put a call in to another scheduler and put things in motion to have that procedure done closer to home. I’ll probably be seeing him weekly and feel good that there’s another Bobby Orr fan looking out for me.