Week 6 - Treatment Week 1 -"Similar to a stabbing victim"

Monday, May 20, 2019

Set List: Friend of Devil, Casey Jones, Ripple, Scarlet Begonias

Day 1 of treatment. Today it’s real. I arrived about 9am. The plan is for radiation at 9:15, brief visit with radiation oncologist, then on to first chemo treatment at 10.

Today there are a different set of techs in radiation, suddenly the whole listening to the Grateful Dead plan is already in question. Thankfully, my new tech friend Joe was there and got right on it. His assisting tech said, “I don’t have Sirius, I’m on Spotify.”

I said, “I’m sure there’s a playlist for them on Spotify.”

While checking me in, Joe multi-tasked. To me, “Date of birth?” To his assistant, “Just search it in Spotify, G-R-A-T-E-F…” and voila, we have the Dead playing. The assistant even made the extra effort to make sure he had it turned up loud enough for me to hear.

I enter the treatment room and lay down. Although the clamping down to the table is still a bit stressful, I have found a little trick to the procedure. As everything tightened down around my head, I heard the techs saying what a great fit the mask is. I’m thinking, “Yeah, maybe from where you stand but try being on my side of it.” I noticed if I wiggled and shifted slightly I could find the sweet spot where I gained a little breathing room and not feel so constricted.

The tech told me today’s procedure would be a little longer than typical because the doctor will be coming in to make sure all of the alignments are correct which involves some X-raying so expect maybe 4-5 extra minutes. From the moment they locked me down I focused on the music and although I had to fight off a little anxiety, the procedure was over relatively quickly.

The sensations of the clamps being released is now one of my favorite parts of the procedure. It means I’m done for today. I say “thanks,” they say “see you tomorrow,” I move on. That’s the routine. “Next!” It’s quite an assembly line of patients they see on a daily basis.

I returned to the waiting room to be called for a consult with the doctor. A medical assistant calls me in to record vital signs and tells me the nurse and then the doctor will be in shortly. I notice it is now 9:55 and my chemo treatment is scheduled for 10. I wander out of the room and find a nurse to let her know I’m coming up against my next appointment. She makes a call and tells me to go on to chemo and I should circle back to the doctor after I’m done. Flexibility is clearly something they’re very familiar with and so far it looks to be the norm around there.

I check in at chemo and sit in a different waiting room. After about 10 minutes I’m called. “Room 5, I have two seats, pick whichever one you want.” I was told to expect a 5-6 hour process so I’m hoping I can get a “window seat.” Yup, even from my earliest memories as the youngest of 4 children, the window seat is still the must have, whether it be the car, an airplane, and now we can add chemo treatments.

I enter Room 5 and pick the only seat that’s available…Not a window seat but I can see outside just fine. I sit in a reasonably comfortable recliner and wait alone for about 15 minutes. The woman who brought me in returned and said she didn’t realize I was a new patient so she explained that I would be hooked up to a portable IV stand so that I can take myself to the bathroom, something I would probably be doing several times over the course of each treatment. I waited a while longer until a nurse came over to start the process.

She asked how I did with needle sticks and while I typically do fine with them, I related how the Pre-op nurse a couple of weeks ago had trouble and I showed her the resulting bruise from that procedure. She took a look and explained that I had very good veins so that nurse must have been new. She then added, “Nurses aren’t taught to insert IV needles in school.”

 “You’re taught on the job?” I asked.

“Yes we’re taught on the job. This is my first time too…just kidding, this is probably my first thousandth.” OK, I can work with sarcasm. She inserted the needle and seemed like she could have done it blindfolded.

The fist chemo treatment was fairly uneventful, I watched some TV, including a rare Red Sox day game (they get NESN), uneventful that is except for lunch. If your chemo treatment crosses the lunch hour, a nearby “gourmet” food store provides bag lunches for the patients. Lunches include, half a sandwich, soup, chips, cookie, and a piece of fruit. At around noon, I was handed a bag lunch. I was reasonably hungry so I opened it immediately to see what goodies were inside. This is what I saw:

Photo 1

Having been raised by parents who were children during the Great Depression, the concept of what constitutes “edible” food was not typical of today’s standards. While reminiscing with my brother a while back, he summed up our upbringing with regard to moldy food, “There are two kinds of mold, the kind you eat around and the kind you cut around.” I’ll let you decide which one applies here.

I shared the photo of the apple with families and friends, because it’s what I do. I gave the apple to the chemo nurse who was taken aback and said, “I’ve never seen an apple like that.” I assume somewhere in the quality control department a complaint was made, unfortunately I have bigger fish to fry so I’m letting that one go, although I did share it with a doctor later that day.

Chemo ended around 3pm and I was sent back to connect with the radiation doctor who I missed this morning. He went over the biopsy results, confirming what I had and stated, “No surprises, there’s nothing interesting about what you have.” Hopefully it stays that way. I felt Day 1 had gone as well as could be expected.

Tuesday, May 21, 2019

Set List: Brown Eyed Woman, Johnny B Goode, Crazy Fingers

I entered radiation to yet another slightly different team of techs. The lead tech had no interest in music choice for the procedure so I became a bit anxious. She was completely focused on the machine and processing another body through radiation.

Soap box time: Thankfully, I haven’t had many medical procedures in my lifetime. One aspect of procedures I do know about and am learning even more these days, is that there is a drug for everything. The downside to this is that many of the drugs need to be taken to counteract the side effects of another drug. I’m already on 3-4 drugs from chemo that are taken for these purposes, to offset each other’s side effects. My motivation for listening to the Grateful Dead during radiation is to eliminate the need for another 1-2 medications.

Since the beginning of time, music has played a role in bringing a calmness and joy to humans, doesn’t matter the kind of music. What the music of the Grateful Dead does for me is break down all barriers to time and space. There is a drug I could take for the anxiety of being bolted down to the radiation table, but if I can get into a state of mind simply by tuning into the music, the number of minutes on the table and the walls of the radiation room disappear. The mask becomes my friend, my protector. I don’t know for how long, but I don’t need to know how long, long enough is all that matters. It is a peaceful state of mind for me.

In my opinion, the lead tech has lost touch with that aspect of caregiving. She’s been there a few times this first week, not interested in whether I can hear the music, not interested in whether the Dead are even playing. I will be addressing this directly as necessary. Thirty seconds of effort to be compassionate is not asking too much. Hopefully in a couple of months this will all be behind me but right now I’m living it. Don’t skimp on the compassion!

After radiation I had to drive to another hospital for a consult on having the feeding tube put in. The appointment was short and sweet, got some more inconsistent information about proper care, depending on which hospital protocol is being used and confusion over whether I would be using the tube right away or taking a wait and see approach. It was over by noon and I was on my way home. The rest of the day I concentrated on needing to eat and hydrate but was feeling a bit drained from information overload and not very interested in eating at all, probably from the chemo. I was relieved that when I started to eat lunch my appetite was fully intact.

Wednesday, May 23, 2019

Set List: Whipping Post (Allman Brothers), Friend of the Devil

Today is one of those days that I feel is going to be few and far between. I need to drive to treatment, receive treatment, return home. That’s it! More mini battles over the music, as described previously (note set list above…), but otherwise all went as planned. My tech friend Joe was present, ensuring the music was to my liking.

Thursday, May 24, 2019

Set List: Dark Star

Today was the opposite of yesterday. No quick stop by for treatment and go home. Today we had to be in radiation by 7:15am and then on to the other hospital for the feeding tube procedure by 8am. Radiation was done promptly upon arrival and we were on our way to the hospital. We made it in plenty of time and again were promptly admitted to the operating room.

The tube procedure went very quickly from start to finish. I was given a twilight cocktail in the OR because they needed me awake to swallow several times while a small camera was inserted in my nasal passage and then sent down my throat. So yes, basically I need to swallow the camera. Once the camera was in place they knocked me out with a stronger sedative. I awoke in post-op and then was moved to a more formal recovery room.

It was here where things changed somewhat profoundly. As I became more alert, I also became more aware of the pain in my chest. Like some of the other procedures to date, I am so damn naïve when it comes to this stuff. I knew I was having surgery but all along I only kept hearing, “Put the tube in, get it done now, don’t wait, you’ll be thankful later.”

Now with the pain enveloping me, I was concerned. The nurse reassured me that what I was feeling was completely normal, “You’re actually doing great with the pain. You have a wound similar to that of a stabbing victim.” Say what? I don’t remember that little tidbit in any of the consults and recommendations of having the feeding tube inserted. It was here that I also realized that my challenge of pain management was going to rear its head again.

After about 5 ½  hours in recovery we agreed I should be released. There wasn’t much point in hanging around unless I was going to demand some serious narcotics and admission overnight. I was looking at a quick day on Friday and a long weekend of no treatment so I opted to go with whatever the night brought at home.

We arrived home around 4pm and I sat in shock for a couple of hours, no appetite, not having much to drink. To manage the night I applied the same strategy I used in the recovery room. I got into bed, eventually, after a couple of tries of zero comfort, found a position that didn’t exude pain, and stayed like that for about 10 hours. I took some Tylenol and Aleve then I dozed in and out on my back until the sun came up.

I arose to get ready for the Friday regimen and was pleasantly surprised that I was hungry and ate a banana and drank some water. Since the procedure eliminated showering for several days I threw on some loose clothing and we headed out. I had a blood draw scheduled for chemo prep, a meeting with a chemo nurse, and a radiation treatment. My biggest concern was the radiation as lying flat on the table locked down while recovering from a STAB WOUND might be challenging.

The blood draw and meeting with the nurse went fine. I found it a little absurd that this blood draw, being done less than 24 hours after a surgical procedure that resulted in me being dehydrated and undernourished would be used to gauge the next chemo treatment. Sure enough, the blood test showed an issue: low platelet count. Not sure how accurate that is though because Aleve can have an effect on platelet production. Stay tuned.

Apparently I also showed a low sodium count so I was told to add salt to meals. Being a salty snack junky, I told the nurse I never thought someone suggest more salt in my diet.

From the chemo nurse it was on to radiation. I walked into the room and the crew was a little taken aback at my appearance. One of the techs asked if I had just been released from the hospital because unlike days 1-4, today I looked like her dad in my socks and sandals. Ah, the aging process of illness.

The radiation team was extremely patient and provided a lot of help to get me through this treatment, from helping to get on the table, making sure I was relaxed and, yes, Joe showed his concern for the music. I escaped to my safe place, the session went well and we called it a day. End of week 1! Looking forward to the long weekend, or so I thought.

We were home for a couple of hours when I noticed my patient portal had a new test result. I logged in and saw there were results for a bilirubin test. The result on the graph showed it was high but beyond that I didn’t understand what I was looking at, until about a minute later when the phone rang.

It was the chemo nurse we had met with in the morning. She wanted to let me know about the bilirubin result. She said it was probably related to the surgery on Thursday and not to worry, we would do another blood draw Tuesday morning. So rationally I’m not worried about the result, I literally went from 9pm Wednesday night with extremely minimal fluids or sustenance for 48 hours and here was a blood test spitting out results with red flags. My only irrational concern is we wait over the weekend, make that the long weekend, before getting some confirmation of new results and whether there are problems brewing.

Friday ends week 1 of treatment. Looking back, this was the week that was supposed to be uneventful. While I’m a bit stunned by how things turned out, I realize that the feeding tube is what turned this into such a tough week. From others I have heard from, I think it was the right decision to have the procedure done now rather than later when my tolerance level might have been severely compromised. So things haven’t gone the way I envisioned but so be it. The issues that arose still fall into the category of treatment side effects. We plod along toward week 2 beginning Tuesday.

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.

Week 4 - Down time? What's That?

Monday, May 6, 2019

When I left my place of employment in June of 2017 to seek a new venture, one of the reasons for my departure was I felt exhausted. In addition to all of my responsibilities at the non-profit, I had become responsible for my mother’s life and end-of-life affairs, we had just finished dealing with similar health issues to mine in my immediate family, my uncle was beginning his end-of-life demise and had asked for my help with his affairs, and my adult daughter’s rise towards independence as a responsible adult living with Down syndrome was reaching new heights.

My hope was that I would start a new chapter with a reasonable amount of down time to catch my breath. Didn’t happen. My point is that the busyness described above, pales in comparison to how cancer seems to be occupying my time these days.

Today I took advantage of some down time and contacted a friend whose husband had gone through what I’m facing. It was great to touch base and discover that her husband was indeed recovered from his bout and has been doing great for 3 years. While I spoke to her on the phone, her husband, who was driving, chimed in with his firsthand experience as well. Her encyclopedic memory of the process was priceless. I’m sure she would substitute the word ‘traumatic’ for ‘encyclopedic’ but I have a tremendous amount of respect and gratitude for her wealth of information and the pep talk she gave me.

She gave me tips on what supplies to get, which ones should be paid for by insurance, to always ask for help when it’s needed, and really more advice than I can remember. They are truly part of my inspiration moving forward. In fact, as I write this today, she posted a picture on Facebook of her husband sitting in a restaurant eating a plate of chicken wings. That shall be one of my goals down the road.

Hearing from her husband and the tips he offered was even more important. After all, he already lived this experience. The first thing he said was if I liked Burger King, I should go fill up on as much of it as possible while I can because having extra weight now will help down the road. Turns out I do like Burger King so I’ll do my best to follow that advice. (Note: Since that suggestion was made, two nurses have confirmed it is a good idea.) We've since been in touch over the past several days, checking in on my progress and providing more info as she remembers it. I CANNOT THANK THEM ENOUGH.

Tuesday, May 7, 2019

Another day of downtime, so I took advantage by having lunch with my brother. We drove to a BBQ joint in New Hampshire. We’re both big fans of BBQ beef brisket and since I’ve been given the green light to fill up as much as I can, this was a no-brainer.

Discussing my situation on the drive up, I had a minor epiphany, and this only applies to my outlook in the here and now and may not be true for others battling the same or different kinds of cancers.

The whole situation of fighting this cancer seems to come down to assignments. It is not unlike a sports team or a work team or any other type of team. Everyone has their role to play. I feel guardedly optimistic that the doctors on my team will kill this cancer. They have the tools, the knowledge, the experience and I feel they are being honest in their prognosis. As the patient, my primary role is not to fight the cancer, but to overcome the side effects of the treatment the doctors will use in their attempts to fight the cancer. The issues of weight loss, difficulty swallowing, dry mouth, nausea, loss of taste buds, are not going to be caused by cancer. They will be the side effects of the treatment. That is the challenge I’m facing. Maybe everyone already knows this but it has given me a different view to consider than I had until now.

There are other team roles, nurses and technicians to perform the care, monitor my health, provide data to the doctors and be there to provide me with resources as needed, family and friends to help lend logistical and spiritual support to the fight, a very important role too.

By now, if you’ve read this far, you see how my minds works. I must find a way to wrap my head around all of the angles of a situation to ignite confidence. I feel like this new perspective was a giant step towards that goal. I have no idea how rough this experience will ultimately be but the possibility of being CONFIDENT with the process is now in the race.

The brisket wasn’t very good. As I told my brother, in my unprofessional opinion, the brisket was trimmed of all of its fat before being smoked which resulted in dry brisket. As my brother noted succinctly, “There’s nothing bad for you on this plate.” If you’re a roadside BBQ joint, that’s not a good review. C’mon people, leave the fat on, it’s the best part!

Thursday, May 9, 2019

Biopsy day. Scheduled for 10:30, we arrived by 9am as instructed. I was promptly bought into pre-op and hooked up to an IV, though the nurse struggled with the needle, I’m hoping that’s not a sign of trouble when chemo starts. My wife was allowed to join me after about 30 minutes and we waited. Another pre-op patient across the room began Facetiming a friend, whatever.

Around 10 an anesthesiologist came by to discuss his process and role in the procedure. I shared the last time I had a  surgical procedure was about 7 years ago. That time I was brought into the operating room and told to count backwards from 100 as the medicine was applied. I don’t remember getting to 98…it was the best sleep I’d ever had. He said this would probably be similar.

Just before 10:30 the ENT, who was going to perform the surgery, came to see us. He explained he was going to be looking for a spot on the base of my tongue to confirm the cancer. If he didn’t find anything there he was going to have to remove my tonsils. If that happened, my treatment would have to be delayed for a few weeks while I recovered from the tonsillectomy.

(As described in a previous entry, what I remember being told and processing is my experience. The following may not be medically accurate.) He further explained if no cancer was found in my tonsils, this could be a case of the cancer being defeated by my immune system and maybe the only spot they could identify was my lymph node. Sounded like possibly great news! The odds probably weren’t good but who knows. That balloon quickly burst with his next words.

“If we can’t find anything, your radiation will need to change from just being focused on your throat to an area from your cheekbone to your collarbone. And it will be an incredibly heavy dose.”

Ouch. That’s a real smack in the face. I didn’t let it affect me too much because as I said to him, pictures don’t lie, meaning the CT and PET scan clearly showed something on the base of my tongue so I was confident he would find something there. He agreed but just had to explain all of the possibilities.

We then discussed a few other “lighter” topics. He asked if I had had the mask made yet. I immediately noticed a giant smirk on his face. He noticed how wide-eyed I got as I retold my experience. He referred to the whole mask aspect of treatment as “horrible.” He acknowledged the important role the mask plays in keeping the patient in exactly the same place for every dose of radiation. He mentioned the radiation machines cost upwards of $10 million and were run by a “big” computer. Having been in IT for years I was a little surprised at such an archaic term for a computer but figured, he’s just a doctor, what does he know? He further went on to say that I had the best radiation oncologist in the business and that today, they were more of a computer programmer than doctor. I guess that’s fine, maybe that’s why I feel a connection to him.

I told the ENT for the last several days I’ve been trying to figure out a strategy on how to tolerate the mask during treatment. I shared that I’ve decided to flip things and think of the mask as a protector and embrace it as part of my daily routine towards being cured instead of trying to defeat it while I'm receiving radiation.

He said, “That’s an amazingly positive perspective,” but I sensed from his demeanor he was thinking, naiveté is a wonderful thing, or maybe it was just plain old denial. 

And then we waited to go into the operating room, and waited and waited. A couple of minutes turned into about an hour delay. The previous procedure in the operating room had lasted several hours longer than planned. Finally, I was given some light anesthesia and wheeled into the OR. I remember being moved from the pre-op bed to the operating table, hearing the ENT say, “He’s drunk,” and I was out.

I must have been dreaming just prior to coming to. I was thinking, “This is weird. I’m dreaming about being in a hospital and the last thing I remember was being in a hospital. It looks like I’m in a recovery area too, wow, very bizarre, dreams are so weird. Who is this nurse next to me? Is she talking to me? Oh, this IS real. I’m waking up.”

Next, still in a blur I noticed the ENT walk by my bed and say, “You still have your tonsils. I found the tumor at the base of your tongue, we’re all set to move ahead with treatment.”

The surgery took about 40 minutes, recovery probably an hour. My wife rejoined me in recovery and we were given post-op care instructions and sent on our way by 2 o’clock.

We were told I should expect a sore throat and mouth sores so a cool liquid diet was required for the next 2 days. On the way home we stopped at the pharmacy for prescriptions and visited the adjoining supermarket for anything fitting the cool liquid mandate.

I won’t bore with those details but I will say, after eating more than I should have for the last few days trying to bulk up, I was now ravenous. I hadn’t eaten anything for about 18 hours and now it was going to be protein shakes and yogurt? For two days? Oh well, suck it up Buttercup. I obeyed the diet orders and luckily wasn’t too sore. I ingested as much as I could stand during the evening, realizing this is a rehearsal of what is to come.

Friday, May 10, 2019

Consult with Medical Oncologist. Due to the lack of available appointments we drove into Boston for this one. This is concerning to me from a macro view that there are either so many cancer patients or not enough doctors that appointments for new patients are becoming scarce. Hopefully just an overreaction not founded in reality.

We arrived at about 11am for an 11:30 appointment. Our parking space was 311. The significance of 311 was not lost on me. Eleven years ago, almost to the day, my sister passed after a difficult battle with breast cancer. She was diagnosed at 44 years of age and passed at 48. Her birthday was 3/11. Yes, I felt some support from her as we pulled into space number 311.

We checked in at 11:15 and were called almost immediately. Could it be we’re actually going to be seen and get back out of the city early? We met with the nurse practitioner first who went over my health history and the story that has now been repeated ad nauseam. We discussed a wide variety of topics but the real conversation about chemo would happen with the doctor.

Then we waited, for about an hour. Finally the doctor came in, scoped a camera through my nose, looked at the biopsy area and began our initiation to chemo. She initially repeated much of what the radiation oncologist had explained, adding information about a clinical trial of proton radiation that may or may not provide better long term results (e.g., dry mouth, swallowing issues, etc.). The clinical trial would mean daily treatment in Boston which was not going to happen. By the time we finished discussing it she actually said there’s a good chance the trial will result in negative results for this newer type of radiation. She also shared that my radiation oncologist was the best in the business, so no reason to abandon that situation.

She said the preferred treatment for chemo would be a low dose of cisplatin weekly. The lower dose should result in less intense side effects than the typical higher doses given only a few times during typical radiation treatment. The lower dose over 7 weeks was preferred due to what they perceive to be a low platelet count in my blood. Not enough to be a major concern at this point but something to keep an eye on. Apparently the chemo can disrupt the body’s ability to manufacture platelets and that being the case I would need to see a hematologist soon, possibly today. So much for getting out of here early.

Seeing doctors in Boston also seemed to cause some confusion. I was asked a couple of times during the day why I was going to receive radiation in one place but chemo in another? I told them it was just a matter of scheduling a consult for today and when I was asked if I would be “willing to go into Boston?” I responded, “I would go to Mars if I had to.” All treatments will be done at the same location reasonably close to home.

When the doctor finished up the nurse practitioner returned, I assume since the chemo was a go she could now speak more freely and directly about the process. While she shared similar information to what the radiation nurse had gone over with me, there was one significant difference. When asked about the process for inputting a feeding tube, she seemed very surprised. She explained that here in Boston, they don’t install feeding tubes prophylactically. I had been led to believe at the site I was being treated that the feeding tube was necessary, no question about it. It’s ultimately a safety net but better to have it in case it’s needed.  She then stated, “They might have a different philosophy up there, but we typically don’t put it in until we have to.” Why would a healthcare institution have different philosophies at different sites? Is it a practical matter as far as the number of patients being managed? This doesn’t seem right to me so I have a call into my radiation oncologist to discuss the matter. (5/13/19 - I just spoke to the radiation oncologist and he feels there’s a 10-15% I wouldn’t need to use it so I’ll be having it put in this week or next.)

I also shared with the nurse practitioner about my new outlook on the mask. She listened closely, considering my perspective. When I finished she said, "Well that sounds good but they do bolt your head down to the table." Wow, work with me here, I'm beggin' ya!

Once finished with chemo we were lucky enough to be seen by the hematologist. He explained what the platelet issue was but as far as he was concerned it didn’t seem like it was something to worry about. I suppose that relief was worth the extra 2 hours we tacked on to the day.

We returned to 311 and headed home around 3:45. Got to sit in Friday afternoon rush hour traffic just like old times, remembering how I didn’t miss this at all.

Week 1 - What the Hell Is This?

And so it begins. The C club has a new member. Like most of us, I’ve been surrounded by other members, many still with us, others who have passed. I’ve seen the disease in its different types stealthily take down some of the strongest persons I know, reflecting now on their circumstances to inspire courage. Can’t say that I never thought this would happen to me, just didn’t know if or when or what kind I might get. I always thought if I did get it, it would surely be some form of skin cancer, given my early working days more than 30 years ago building houses and installing roofs in south Florida, sunscreen be damned.

In my case though, there is a very short back story.

Patriots’ Day weekend 2019 I began feeling neck pain which was also flaring into a headache that wrapped around the left side of my neck and head, ending behind my left eye. After several attempts at massaging my neck for relief, I noticed a swollen gland on the left side of my throat. Not one to typically seek medical intervention, this time I felt something was definitely wrong. I called my primary care practice and spoke with the on-call (there, I almost said it…nope wait for it, several days to come) nurse practitioner. He assessed my condition and determined with no other symptoms present, I should wait until my dentist appointment Tuesday morning to see if this might be teeth related. (He also called me back about 30 minutes later to inquire about Cat Scratch Fever, the malady not the song.)

My wife suggested I try a "warm compost" for relief.
I said, "Warm 'compost'? Are you sure you're a nurse?" Turns out she's not. She's a librarian, and a damned good one at that. She is so good that I asked her permission to share that exchange. Tread very carefully with your caretaker in times like these...

Tuesday, April 16, 2019

The dentist visit indicated no issues relating to my teeth so I made an appointment to see the primary care physician that afternoon. Ah yes, the afternoon of April 16^th, like my birthday, a date that will live in infamy.

My primary care doctor was unavailable so I saw another physician at 3pm. When he felt the swollen gland his reaction was, “Whoa, that’s a whole lot of lymph node right there.” And the whirling dervish of health care began. He ordered 5 vials of blood drawn for testing, a chest x-ray, told his assistant to get me in to see an Ear, Nose Throat specialist ASAP, and to schedule an urgent CT Scan. Don’t have to hit me over the head, I know it’s game on now and things don’t look good.

The lab in the office was closed but his assistant was permitted to open it and perform the blood draw. After completing, she had me sit with a scheduling agent who was on hold with Salem Hospital.

The agent gave a few “uh-huh’s” and then hung up the phone, looked at the clock, turned to me and said, “You’re scheduled for a 5:30 CT Scan in Salem, better leave now.”

I responded, “What about the X-ray?”

After another look at the clock, “Yeah, you probably can get that done down the hall before you leave.”

After the X-ray I drove 35 minutes to Salem Hospital and walked into the Imaging Department around 5:15, received a contrast dye CT scan and returned home around 7:30.

Wednesday April 17, 2019

8AM: Phone call from the nurse at the primary care office asking if I could come back in to give another vial of blood. She “needed one more than I took yesterday. Come in at your convenience.”

I headed out about 9am for the 15 minute drive. About 30 seconds away from the office another call, this time my primary care doctor.

“I have the results of the CT scan from last night. I’m not going to sugar coat it, this is not good. You have a couple of different things going on, a swollen lymph node, something going on with your left tonsil, and nodules on your thyroid. The ENT you see tomorrow will be able to provide more info but this is very concerning.”

“Well if you’re not going to beat around the bush, are we talking throat cancer?”

“Maybe. Sorry, I’m really sorry.”

And there it was. I said it before he did. The first non-definitive punch to the gut. The first piece of information that starts your mind thinking the worst but hoping for the best. The Emotional Derby is about to begin, “And they’re off!”

I continued on to the office to give that extra vial of blood. Upon sitting down in the lab, and after giving my name, the attendant said, “Oh, you were the last one in here last night. I found a vial of you blood left on the counter this morning.”

“Oh, so you don’t need to take any more then?” I asked.

“It sat out all night, it’s no good for testing. I told the nurse this morning and she insisted she didn’t leave it out but I showed it to her. She was mortified.”

OK, so when I got the call in the morning about “needing another vial” she wasn’t being completely honest about why. Just sayin’.

Thursday, April 18, 2019

Consult with ENT. Still nothing definitive as of yet so HOPE is very much in the lead. After exchanging pleasantries, doctor begins a thorough oral exam including placing a camera into the nasal cavity to look “behind” my tonsils, into my esophagus (I presume). He does not see any indication of trouble anywhere, including the tonsil, except for the swollen lymph node. Next step is a Fine Needle Aspiration (FNA) of the node to send out the fluid for biopsy. As he withdraws the fluid he notes that it is yellow which to him initially indicates pus. More likely this is an infection, and he is “not overly concerned about this.” HOPE, with the whip, dashes further in front and is surging several lengths ahead of the field.

After completing the FNA, the doctor opens the door and asks his nursing team, “How do I send fluids out to the lab?” Ruhroh. Maybe Dr. Howard or Dr. Fine can help him with that. Suddenly the comfy feeling that this will all be over with "take 1 every 12 hours with food" is waning. Here comes DOUBT creeping up on the inside rail. He doesn’t know how to get my samples to the lab? WHAT? The nurses put him at ease and said they handle that part so no worries needed.

When he returned he asked if there was anything else to discuss. I inquired about taking antibiotics in case it was an infection since I’ve now been walking around with this lump for about a week. He agreed and I began taking a general antibiotic while we awaited the results of the fluid biopsy.

Friday April 19 – Sunday April 21, 2019

Uneventful weekend except for one thing: although the lump did not seem to be impacted by the antibiotic, the neck pain and headaches stopped. Looking back this may have been due to less stress with HOPE still significantly out in front of the pack.

Week 2: Shit Just Got Real

Week 3: Holy Phuc

Week 2 - Shit Just Got Real

Monday, April 22, 2019

Phone rings at 8am, call from ENT. “I got the labs back and I’m sorry to say it is cancer. I’m really sorry. This result is very surprising to me. I’m going to order a PET Scan ASAP so we can figure out where the primary site is and also see if there are any other places it may have spread to so we can treat them also. I’m really sorry.” HOPE can’t keep up the pace, it has faded back into the rest of the pack. FEAR is now making a charge on the outside for the lead.

At this point my patient feedback to doctors everywhere is this: When you say “I’m really sorry” to a patient, what are you “sorry” about? Please explain yourself. I can tell you when receiving this information, I took it to mean my life might be ending soon. I laid awake several nights pondering death and came to realize I wasn’t really afraid of death, I was afraid of not living anymore. I know intuitively I suppose, that throat cancer can affect your tongue, ability to swallow, eating, speaking etc. It can have a profound impact on life as you know it, either affecting its quality or ending it altogether. The limited Dr. Google searches I performed had me deceased within a year, I’ve since stopped Dr. Googling. Yes, FEAR does that to us, no surprise there. When I shared these feelings days later with my wife, she said she thinks they’re sorry that they had to give bad news and did it over the phone.

Tuesday, April 23, 2019

My Primary Care doctor called me at about 6pm. Wanted to see how I’m doing and if there’s anything he can do. He suggests I let him prescribe valium for the PET Scan scheduled for Thursday in case I have any concerns about anxiety/claustrophobia. In my younger days I would have brushed it off, but I’m open to all possibilities now. He let me know that he was calling on his cell and I should call him anytime I needed him. He said what I was facing had a rough road to recovery and there were decisions to be made along the way affecting quality of life. I shared that I just wanted all of the doctors to be honest and upfront with information they had. He said if I ever felt I was not getting truthful information from someone to call him and he would connect me with a different doctor. His words, “The days of holding back information from a patient are over. Today doctors need to share everything they can with the patient, it’s their body. They have a right to know and make their own decisions accordingly.” I’ve known this man for almost 30 years. I will be nominating him for the doctor’s Hall of Fame at some point.

Thursday, April 25, 2019

Heading out to see the ENT and then having the PET Scan. Minutes from the house, I get a call from the ENT.

“So you had the PET Scan yesterday?”

“No, it’s today. I’m on my way in to see you and then the scan is at noon.”

“Oh, no wonder the result says ‘incomplete,’ it hasn’t happened yet. So if you’re coming in to see me I don’t really have any more information than when we last spoke on Monday.”

“So I asked on Monday if I should cancel this appointment since I knew that was going to be the case and was told you wanted me to keep the appointment.”

“Yeah, they also told me the PET scan was going to be yesterday so I thought it made sense. I’m happy to see you again this morning if you want to talk more, up to you.”

“Well, I’m on my way so let’s meet.”

I think anytime you can get face time with a doctor during times like this it’s important to take advantage of it. We met, discussed the results of the biopsy, he still showed surprise that his original “gut” feeling wasn’t correct and I reminded him that “that ship has sailed.”

I asked him about the feeling of urgency I sensed from not only him but my primary care and explained I was of two minds. On the positive side, I felt that doctors don’t like not knowing what’s wrong with someone. They feel an urgency to get to the bottom of the issue and begin healing the patient. On the negative side, I was concerned that whatever I had was serious and they were moving extremely fast because I was, in a word, screwed.

He assured me that the urgency could be explained simply, “You came to me for answers and all I’ve been able to give you is ‘maybe’s and probably’s,’ and that’s not good enough.” ENCOURAGED has now shown itself to be a factor in this race.

He shared his sense that the type of cancer I was dealing with was one he has seen successfully treated. He stated if it is what he now suspects, that “100% of MY patients have been cured.” Sounds good but as I tend to do to a fault, let’s dissect that statement. 

100% of MY Patients…

1 patient cured is 100%. Good but not necessarily impressive.

10 patients out of 10 cured is also 100%. Much better trend there.

“MY” patients. I love doctors who are confident. I wouldn’t want any other kind. This does give me slight pause however. Are they cured because of “HIS” treatment and approach? Am I better off because he’s my doctor or is he merely stating a fact that all of his patients that have had this specific type of cancer are all cured. I’ll stick with a winner but again, the statement gives me pause.

On to Imaging and the PET Scan. It’s referred to as a “full body scan.” It actually images you from the top of your head to about mid-thigh or knees. Not exactly full body then but whatever, apparently there is no concern something below your thighs could exist without a trace of it higher up, possibly in the abdomen. I already knew that the machine was very similar to the CT scan and I didn’t feel any anxiety about the procedure. (The valium remained in my pocket.) The scan machine is basically a donut with a table moving the patient back and forth through the hole. No reason to be concerned for me. The entire process took about 2 hours; 45 minutes in a prep room drinking a berry cocktail for the imaging, some radioactive agent injected, on to the machine, several minutes of laying still, procedure over. Now we wait.

It seemed by now there was definitely something going on in my tonsil, possibly my thyroid so this would confirm that but would it also find something had spread beyond that area? I asked how soon would I be informed of the results and would it be before my consult with the Oncologist the following Tuesday. I was assured I would hear sooner than that.

At 6pm my primary care doctor called confirming I had a PET Scan. I said I finished about 3 hours ago, he said, “I have the results.” That didn’t take long, again the urgency question appears. He said the scan confirmed a tumor in the base of my tongue, also referred to as the lingual tonsil and a swollen lymph node containing cancer cells. We discussed the seriousness of this but he could not answer specific questions about survival or recovery rates, not his area of expertise. He shared that he had 1 patient who went through this and it was a rough road to recovery. He asked if I had done a full body scan because he only had the throat/neck report. We would have to wait for the rest of the results.

Friday, April 26, 2019

The patient portal app is a wonderful thing. I never used it very much but it’s a great reference for seeing the results of different tests, blood work, etc. It also stores and tracks appointments. Friday morning I got up and took a peek to see if the PET scan results were posted. They were not but several new appointments were in place, scheduled by the ENT. About 30 minutes later he called. I told him I noticed he had been busy. He went over the same results as the primary care did the night before. I asked if he had the rest of the results and he realized, “Oh, that’s probably what you were most concerned about overnight. I do have them here. The results show everything else is normal. We’re just dealing with the base of your tongue and the lymph node.”

I asked again about his experience with treatment and he repeated that “100% of my patients have been cured.” I asked if their treatment was exclusively radiation and he said that was the case.

He added, “I’m curious as to what the oncologist has to say next week, we’re usually on the same page. Have a good weekend.”

“Thanks.”

Saturday, April 27-Monday, April 29, 2019

Another stretch of unremarkable days except for letting all if this information sink in. Lots of jockeying for position amongst my emotions, mostly positive though. I attribute much of that to wife, who is my ROCK.

Week 3: Holy Phuc

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.