The time between my last appointment (the behavioral health referral mentioned in the last post) and today was marked by various degrees of normalcy, and with it, some renewed mental energy.
I was starting to endure a significant amount of stress, at least internally. Stress is really bad for you if you have cancer. Not only is there some research that suggests that stress produces hormones that aid tumor growth, but in me it manifests itself as a lack of appetite; this is a problem. For about a month now I’ve been trying to “bulk up” in anticipation of significant weight loss as my body responds to radiation and chemo.
Bulking up with fat is a massive chore for me. I’ve been walking around at the same weight for at least 15 years, and I have a high metabolism that drives that homeostasis. I’m very active: I routinely lift weights, I play hockey a couple times a week, sometimes more, and in the summer and fall I spend much of my child-free time in the backcountry scouting or hunting. Three weeks into this attempt to eat …and eat… I’d plateaued at 15 pounds gained. I’d ceased all unneeded physical activity, began eating calorie dense foods, shakes, eating between eating, and anything else that made sense.
15 pounds is all I could manage in becoming the most unhealthy version of myself. Frustration of this lack of weight gain was adding to my stress levels, which kicked off the negative feedback loop mentioned above. I was stressed because I wasn’t hungry, and I wasn’t hungry because I was stressed. To add to the stress from me trying to play Hungry Hungry Hippo-man, my neck tumor started to get weird.
My brand of cancer started in my throat, at the base of my tongue, and spread to the lymph nodes on the right side of my neck as previously established in this blog, but my neck was really starting to get uncomfortably large by mid-February. As more fluid and necrotic tissue built up, it began exerting pressure on my ear, jaw, and every other structure around it. This was both uncomfortable and alarming as the time ticked away between biopsy and treatment.
Then, for no specific reason I can identify, my neck lump began to rapidly deflate. It was almost perceptible: I was sitting in my new easy chair and noticed it start to feel. This is significant because other than pressure, it doesn’t have a sensation of any kind, so all sorts of thoughts began to race through my head. “Oh god, is it spreading somewhere else? Is that how it works?” Fortunately, I’m mildly retarded and this was just the ignorance speaking, as what is more likely (according to the internet, my ENT nurse never called me back when I left a message about it, so I assume it wasn’t life threatening) is that my body was flushing out the necrotic cells and fluid. However, because I didn’t know this at the time, I took it as a harbinger of my imminent doom. Enter more stress.
While I’m talking about being in tune with your body, let me just take a moment to give a shout out to women writ large: In my experience, women are always “listening to their body” and trying to apply self care for every little odd physical sensation, to include communicating it externally. This is not a common phenomenon for most men. We ignore our bodies entirely, accept pain and physical sensation as “welp, this is my life now” or “I guess I’m dying now, better clear the browser history lol.” Having a malignant tumor makes you, as I’ve heard Rena say, “a hostage in your own body” and not only are you hyper aware of your body, but every single little sensation triggers the, “oh God, this is the end, isn’t it?” I have no idea how women live like this. Ignorance is bliss.
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Be Hard to Kill
I had a great weekend with the kids, all things considered, and we went to a local park on Puget Sound that’s known to host marine mammals at certain points of the year. I’ve heard that Puget Sound is experiencing an unsustainable boom in Harbor Seals at the moment, which is devastating the local salmon population and drawing in more Orca pods. Despite the ecological strife, they are kind of funny to watch, and we did for a time after a long walk along the coast to get to where they were hanging out.
This was the longest sustained amount of physical activity since my last skate on 10 February, and my body let me know it. Fortunately my son, who generally likes to be carried on my shoulders, was fine on his own most of the time so it wasn’t unnecessarily taxing, but between some kind of bad allergy attack I was having and the walk itself down the beach I was totally exhausted. I had to get them back home so I could relax and recover.
I was probably around my lowest point, mentally, of this interregnum between the flurry of initial activity, and the beginning of my treatment. Sunday evenings are usually tough days for me. I get to come back to an empty home, sometimes with toys still strewn about, and pick up the pieces of my weekend life. I wasn’t eating like I should have been, I was sleep deprived, stressed, and just not in an ideal place mentally. I needed to make a course correction fast.
Monday I decided to put on my uniform and go into the office to try and feel some sense of normalcy, and it might have been the very thing that gave me some sense of renewed purpose. At some point in the day I remember sitting in my car and just saying to myself, “be hard to kill.” It was some saying I saw once on a moto-tshirt God knows where and who knows how long ago. The idea behind the saying is that you make yourself as strong and as capable as possible so that you become too difficult to attack. For whatever reason that morning, I decided that saying also applied to my current situation. I had to become hard to kill.
This could have been my million dollar idea but the bro-vet industrial complex beat me to it.
Just like that my appetite came back, I began checking off a bunch of things on my “to do” list I’d been putting off, and even got some minor tasks done at work. I even started to do something I’d been outsourcing to Addison previously, which was browsing Reddit for answers, and I started learning more about those like me- those who had had this condition, this treatment plan, and were in the middle of it or had survived it. It’s honestly something I should have taken responsibility for sooner, but I’m too stubborn for my own good sometimes.
This culminated in me (metaphorically) grabbing my nuts and going into dental to get a consultation with a dentist about my upcoming radiation and procuring the prescription dental items I will be using for the rest of my life. I walked in and was politely persistent that I needed to have a consultation with any dentist that had white space on the books. Fortunately they drummed up a guy that had some experience with oncology patients and he not only hooked me up with the prescriptions I needed, but talked me through what to look out for during and after treatment from a dental perspective. He was altogether much more competent than the guy I got my pre-radiation exam from and I felt like my preparations, medically, were just about complete.
Now if the proton therapy clinic would just call me to tell me what time I’m supposed to show up on the 17th…
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
A few days after I’d been seen at the university hospital I was scheduled to return to a different hospital campus in that same system a few exits further north, meaning in good traffic my daily drive would be at least an hour there and back. This is a long way to drive for medical treatment by any standard, but even more punishing considering that I live in the largest metro area in the upper left corner of the country. Most days I-5 is unforgiving at best; in the Puget Sound metro area this day was no different.
This is as painful as it looks.
At this point I was used to pulling up to parking meters where I’d have to take a ticket and remember to have the medical office validate it on my way out for large garages or sprawling lots at some medical mall, and this day was no different. I took my ticket, and pulled up to the building that had “PROTON CENTER” in giant letters on the outside. I was told that these buildings are actually built around the proton radiation machines due to their size. Big if true.
Walking in through the front door revealed the stark difference between a general hospital and a cancer center immediately. Huge cathedral ceilings, couches in a giant waiting area that had a library, a snack bar, wifi, and two receptionists and their assistants. This was like comparing my local county rink to an NHL practice facility.
I was greeted, a badge made for me, my parking validated, and given some paperwork to complete. I didn’t even have enough time to finish the paperwork before being called back to the “NASA” room where I was to see the first in a line of people that would be involved in my care. It’s called that because this type of therapy is most commonly given to pediatric patients and they’ve teamed with NASA to create interactive experiences to explain to the kids what is going to happen there. I was lucky to get a Star Wars band-aid at the doctor when I was a kid.
First up was the “Patient Navigator” which is basically a social worker of sorts. I was given a lot of information in folders about my doctor, the treatment, the care team, facility, and additional information on nutrition, side effects, and lodging for the area.
After that me and my mom were taken to a more standard clinical room where I was asked by the LPN to review my medications they were tracking and to take my vitals. She was followed up by my nurse, who gave me an IV port in preparation for my CT scan during mapping (the contrast fluid, like the others I’ve discussed previously, is given through an IV). Interestingly, she asked me if I wanted it in my chemo port or in my arm. I decided I wasn’t ready for the trauma of having a line run into my chest just yet and opted for a traditional arm vein. It came up during this conversation that my nurse also had a chemo port installed. I didn’t ask why, which I figured would be impolite, but my first reaction was no longer of curiosity, just sadness that another younger person has to walk around with this bullshit.
Dr. Panner was unavailable to meet with me, but it wasn’t really a big deal to me. He’s not some sort of final boss like a video game- he’s more of a supervisor. He checks, validates, and troubleshoots problems no one else can figure out. The LPNs, RNs, radiation techs, and the other worker bees are the ones that would handle me day to day so it was more important to me to see their faces.
The mapping process was virtually identical to the one I did at the Army hospital’s RadOnc, so if you want to relive that experience, check out this post. As soon as I was done, they said that I’d be starting in just over two weeks, to expect 33 treatments, and to expect a call within a few days of the start day to hammer out a report time. In the meanwhile I had appointments and other preparatory chores to keep me busy, but nothing exhaustive. I still had the big decision looming over where I wanted to do chemotherapy, but that wasn’t super pressing at the moment.
I discussed it with mom, and we decided it would be best for her to fly home for a couple weeks because there was no real purpose for her to be here if I wasn’t going to be starting treatment when we first thought on 3 March. She booked a flight out for the next evening and that ended part 1 of my mom as a caregiver. She made it to all the important appointments, helped me survive the tube and port placement, and was a forcing function to get me to address some tasks I know I’d have been overwhelmed by if left to my own devices. Good moms are hard to come by; I’m luckier than most in this regard.
The next morning I had hastily scheduled a dental cleaning since I had space in the calendar to do it now. Because I wanted one as soon as possible, the clerk at my dental office sent me to an office across post that I’d never been to. It was almost serendipity, because as it turns out, my hygienist was a cancer survivor. He had melanoma that spread to his lymph nodes and he told me all about his treatment and recovery. It was a different cancer with a different treatment, but a fascinating perspective. The cleaning was unusually gentle and fast and left me wondering if he had taken it easy on me because I was in the same club, or if my teeth were actually just that clean. I guess I’ll find out in six months.
After a fairly uneventful phone call with a different social worker at the cancer center pertaining to lodging assistance I was skeptical I’d qualify for, I said goodbye to my mom and hit the road to go get the kiddos.
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The Decision
I had a pretty good weekend with the kids. My daughter played in her hockey game in the morning, per usual, then came home to work on a new puzzle I’d gotten her from one of the local thrift stores. It was 300 pieces, which was going to be a new record for her, and I wanted to give her some time to relax before we went to the park. It was going to be a ‘false spring’ day, sunny and over 60, so I was planning on taking them down to a playground near Puget Sound and letting them wear themselves out with the undoubted throngs of other kids.
I met an old Army buddy there with his kids and brought him up to speed with everything going on with my treatment, and caught up in general. We generally talk a lot of shop when it comes to hunting, and I lamented that I still have a bag hanging in a tree in the national forest with some of my hunting camp supplies. It’s 5 miles one-way to this bag; with a 2000 foot elevation gain and it stays snowy until after Memorial Day… yeah it’s gonna be up there a while longer.
My son, who is barely removed from being a toddler and has some sort of developmental delay to boot, started melting down and I knew it was time to go. He was upset to have to leave but was generally moving with us toward my car. Then the fucking ice cream truck showed up.
Giving this thing the title of “ice cream truck” is pretty generous. Some of you are already picturing what I’m talking about. This thing was a minivan that probably had a salvage title, a bunch of coolers in the back, and “not for individual sale” ice cream bars and sandwiches being hawked from it. The poorly adhered labels on one side and obnoxious music blasting from it were the chef’s kiss on this tetanus-mobile. Under no circumstances would we be getting ice cream from this thing.
This is the Rolls Royce version of what I described above.
My son had other ideas, and at first I had to grab his hand and pull him along, then he went dead weight and had to be picked up. I slung him over my shoulder as he had a meltdown and eventually got him into the car. He viciously resisted being put into his car seat as the meltdown continued, using all the physical tools at his disposal. Normally this doesn’t bother me, as I will always win this contest, but in this instance I was nervous he’d grab at my tube or headbutt my port. Fortunately he didn’t, and by the time we got home he was done giving us a piece of his mind.
The start of the next week was ushered in by me throwing on my uniform and showing up to the office. It was about time I rolled in and started chipping away at what few tasks remained on the docket. Right after lunch I decided I’d had enough and left to see about some prescriptions and other admin items that I needed to get sorted out. I felt as normal as I could tolerate for half a day.
I had my mandatory referral to behavioural health, specifically a clinical psychologist who sees cancer patients, the next day. It only took me four tries to get to the right office, as the annex I went to was loaded with ambiguous titled BH offices. Once I made my way to the correct place I filled out more paperwork, and was sat in front of a computer to do a fancy screening to make sure I wasn’t going to kill myself of others.
I sat down with the psychologist and began to talk about the results of the screening (I passed with flying colors, you all are safe… for now) and a variety of subjects. He assessed that I was very resilient and had a good support system, so that if I wanted to come back I could do so on an “as-needed” basis. I am choosing to believe he is right and this is one appointment that I can permanently shed.
It was around this time I started to solidify the decision about chemotherapy in my mind. The choice was: move my chemotherapy and all my specialty referrals over to the cancer center, or keep it all at the Army hospital. Ultimately I decided to keep it all at the Army hospital. Logistically speaking while yes, I’d be driving to the cancer center every weekday, over the long term and in acute instances I’d be seen at the Army hospital and it just made more sense to keep as much under that umbrella as possible.
While this was 100% my decision to make, I still felt a great deal of relief calling the cancer center to cancel my onboarding appointment with them later the following week. It just made sense, so, naturally, I fully expect this to blow up in my face. Old habits die hard; in this case in the pursuit of not dying at all.
(Author’s note: This may be the penultimate or final ‘prologue’ entry. Stay tuned)
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
Monday was supposed to mark the beginning of my last week of normalcy, or what I’m beginning to recognize will be “old me” in a few months. Instead, Monday upended my entire treatment plan and injected chaos into my care team.
When I hit the road to Seattle to visit the local university cancer center, I felt like I was checking another block- just another task to complete on the road to treatment. I was going there to get a second opinion, on the referral of MAJ Rafferty from RadOnc, to see if I was a candidate for “proton therapy.”
“In very basic terms, the main difference between proton radiation therapy and photon radiation therapy is the type of particles used to deliver the radiation.
Proton radiation therapy uses protons, which are charged particles. These protons release their energy mostly at a specific depth in the body (called the Bragg peak), so they can target tumors very precisely with minimal damage to the surrounding healthy tissues.
Photon radiation therapy uses photons, which are light particles (like X-rays). These photons release their energy as they pass through the body, meaning they can affect both the tumor and the healthy tissue along the way to the tumor.
In summary, proton therapy is more precise and may spare more healthy tissue, while photon therapy is more commonly used but may affect more surrounding tissue.” -ChatGPT
To make this into a military analogy: Proton therapy is a sniper rifle trained on a specific target. Photon therapy is a hand grenade addressed “to whom it may concern.”
MAJ Rafferty knew that proton therapy was not widely practiced on adults (it’s mostly a pediatric therapy due to the smaller impacts on long-term quality of life) but wanted to see if I was a candidate “because of my age.” At 38 years old I was now suspected to be more in league with an eight year old than an 80 year old. What a time to be alive.
After, yet again, being the youngest person in the waiting room by several decades, I was seen by a RadOnc resident where I was immediately told I was a good candidate. The RadOnc head and neck specialist, Dr. Panner, then came in and, in very monotone serious terms, explained that not only was I a candidate because I (ostensibly) have a lot of life left to live, but also because the cancer is in a sensitive area. He immediately wanted my consent to treat me and to consolidate my care under the university hospital cancer center umbrella. Life comes at you fast.
I told him how important it was for me to hear from my team of Army doctors that they agreed with his proposed treatment plan and that they should be able to reach a consensus with him. I knew them and trusted them, so it was important to me that they blessed off on his proposed treatment too. Fortunately, his treatment plan was virtually identical minus the change in location.
This was a lot to take in in the span of minutes. You know what else is a lot to take in? Another scope to the face. Dr. Panner decided this was an excellent opportunity to teach his resident how to perform an oropharyngeal scope. I anticipated this, to some degree, but that didn’t make it any more pleasant. The scope itself doesn’t really bother you: it’s the numbing agent. It happens as a nasal mist that then runs down the back of your throat and, before it numbs anything, tastes terrible.
It was late by the time we left the university hospital, and there wasn’t an opportunity to communicate my news to my Army team of doctors. First thing the next morning, however, I fired off a series of emails to my doctors to let them know what happened the afternoon prior. Closely after that, my ENT nurse called me to ask me what I wanted to do. I told her that, pending the input of the Army doctors, it made sense to me to keep all my care under the same banner, but not to turn anything off yet at the Army hospital.
Enter another agent of chaos: I was then called by the proton therapy scheduler, who told me I’d be coming in Thursday afternoon to repeat the mapping process I mentioned in an earlier blog post, but she also told me that the chemo center was backed up so I should proceed with doing everything at the Army hospital since it was already set up there. Fair enough, works for me, I guess I’ll do that. It just so happened I was on my way into the Army hospital to do my “chemo class” anyway, so I could socialize all this there.
While I waited in the MedOnc lobby I experienced an interesting phenomena: my doctor did a drive-by on me by grabbing me out of the waiting room (I wasn’t scheduled to see him as part of this class) and discussed the news of Dr. Panner’s office’s findings. He agreed with pursuing proton therapy and keeping chemo concurrent. I interjected to let him know that all was well in the world because they had just told me on the phone to maintain my treatment plan sans radiation at the Army hospital. All parties believed this was a good thing, but he raised the issue that traveling an hour north and south every day might eventually get difficult on me. This was a reasonable concern, and we brainstormed with the social worker, who approached us in the hallway, on how we might address this. The downside to being a broke-ass Captain is that while I make a lot of money on paper, roughly half of it flies out the window due to reasons previously mentioned in this blog; lodging assistance would have to come from private sources (if at all). Otherwise, the drive was the drive and I either wanted to live or I didn’t.
I did an abbreviated version of chemo class. It was supposed to go longer, but once I realized the nurse was just going to read to me I asked her to hand over the materials for my later review and give me the grand tour. I met the staff pharmacist, looked at the chairs, and asked some questions about what I was allowed to bring and what they provided in house. Turns out chemo is a four to six hour ordeal in my case, so chargers and devices are a must-have.
I left feeling that, while logistically sub-optimal, this would be the path going forward. I was slapping the table and this would be the way. I wasn’t going to wait until April when chemo was available.
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Godfather’s is open. Right? Guys?
When I was in my late teens me and three of my friends would pile into one of our cars and act like complete morons around my hometown of Kalamazoo, Michigan. We had someone from every demographic of dork-dom. We had Ted, the transplant New Englander who hadn’t figured out he was too sophisticated for us yet. Brad, the short chubby nerd. Mike, the goofy meathead. And me, the cynical asshole. We, as most men can attest, showed our care to each other by constantly harassing and berating one another. Real big “I hate you all but I’d die for you” energy that, so far as I’ve observed, is only common in male friendship circles.
We were cruising the mean streets of “The Zoo,” trying to figure out where we were going to eat, and in so doing also be obnoxious menaces to the general public (it was almost always Steak n Shake).
As we brainstormed somewhere other than Steak n Shake late at night, there was a period of silence when all you heard was Mike meekly saying, “Godfathers is open? Right…? Guys…?”
Me, Brad, and Ted all contemplated this briefly, and in unscripted moment of perfect unity turned to him and said, “MIKEY, SHUT THE FUCK UP.” It was poetry. When other people want to make a statement with an increasing lack of confidence, the common cultural reference is “I’m Ron Burgundy?” – we have “Godfather’s is open. Right? Guys?”
The next agent of chaos came in the form of a phone call the next morning. She was a nurse with the MedOnc team at the university hospital and wanted to know when I could come in for chemo lab testings. Uh, what? I explained to her what the RadOnc scheduler had told me from her same hospital and she was perplexed, as she didn’t know why they’d say that because they could absolutely get me in to start chemo on time with proton radiation.
“Do you still want to go ahead and make an appointment?” she asked.
“Godfathers is open. Right? Guys?”
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
I have a long history with being in the water. In high school I was coaxed into joining the varsity swim team by the JV football head coach who was, not surprisingly, the coach of the boy’s swim program at my school. He was passionate about coaching, but unforgiving as a designer of practice routines. Treading water was a favorite of his. It’s also a big part of the Army’s combat water survival test.
Treading water is the act of staying in one place and remaining above the water upright without floating. This means remaining stationary by kicking your feet while pointing them straight down and paddling your arms in small motions so you don’t inadvertently float on your front or back. There are different techniques to do this to conserve energy, but when done for long enough, especially after a taxing swim, it can quickly turn into a slow descent to hell if floating on your back isn’t an option. Exhaustion slowly consumes you until you just want to swim over to the edge of the pool and endure whatever verbal abuse awaits you for wanting a break.
The week started off simple enough with a mid-morning appointment to speech therapy, with an afternoon appointment with the geneticist. Now I don’t have a speech impediment or learning disability, at least diagnosed, but the speech therapist is all-things mouth and throat muscles. One of the wonderful potential side effects of radiation therapy is long term difficulty swallowing, and they needed to get a baseline measurement of basic mouth muscle function to assess where I am at post-treatment so a rehab plan can be constructed when I make it to the other side of this thing.
The speech therapist had been doing this since I was born, quite literally, and was a very charming older woman that took literal measurements of my mouth and throat, and observed me drinking water and eating crackers to see if I looked… normal? I actually have no idea, but it passed the common sense test so I didn’t ask what she was looking for specifically other than knowing whatever tests I was given were passed without issue.
After some “empathetic listening” to my tale of woe, she offered to pass my information on to another active duty soldier that she regularly saw as he rehabbed from his own head/neck cancer that received similar treatment to mine. I was absolutely craving to talk to someone with firsthand experience of what I am about to endure and jumped at the opportunity.
Later that day I stopped into the place where the geneticist hides out; I only mean that in slight jest as the hospital directory makes no mention of their office and they are buried deep inside a pediatric care clinic. The reason? She mostly serves to perform genetic testing for parents that might be passing on spicy DNA to their newborns such as chronic diseases and other ailments. In my case, MAJ Rafferty saw enough family history of cancer in my family to auto-refer me to this office. After a pleasant talk with the geneticist, she didn’t believe my cancer warranted any immediate genetic testing since its markers were not genetic in nature and it didn’t present itself elsewhere in my family. She did agree though that it would be worth it to come back in after treatment and discuss a test to see if I’d passed on any other cancer markers to my kids. I might just take her up on that offer.
The next day I made my way to the audiology clinic because one of the often overlooked side effects of cisplatin chemotherapy is hearing loss, with the best case being amplified tinnitus (just about everyone in the military, especially the GWOT generation like me, has tinnitus) and some sort of higher-frequency loss. The audiologist, as in THE audiologist- not a tech, was there to perform a higher level of hearing exam than your standard “press the button when you hear the beep.” I underwent a comprehensive exam to establish my baseline because, in reality, hearing aids are likely going to be part of “new me” when I get on the other side of this.
IYKYK
The hearing exam itself isn’t invasive, but it does take a while and involves not just headphones and buttons, but other diagnostic tools and even speaking back words that you hear. Overall my hearing is, somehow, in decent shape at the moment- perhaps the biggest surprise of the week up to this point.
This brings us to Thursday, and my second consultation with Dr. Ferrell at MedOnc. This was a replay of our first meeting with more questions and explanations of the side effects of cisplatin, the chemo agent, as my proposed course of treatment. We discussed my pending appointment with the civilian cancer center at the University of Washington to discuss my candidacy for a newer type of radiation, and what impacts that might have on my treatment plan. Ultimately, I signed the chemo treatment consent form and scheduled a “chemo class” for the next week so I could, like any other part of the military, be trained on how to prepare for my two to three rounds of four-hour chemo treatments.
Finally, Friday, TGIF, no medical appointments… but still relevant medical news. Dr. Shannon, the ENT oncologist from the local civilian hospital, called me back with the results of their own tumor board first thing in the morning after he left it; they concurred with my Army hospital team’s treatment plan with the exact same conclusions about my variety of cancer. In a way this was a relief: now I knew that surgery was off the table altogether (for now) and I could focus on the sure-fire treatment plan of radiation and chemotherapy.
Now, I realize that was a dry list of appointment summaries, but that is my daily existence. Medical appointments, preparing my home for the next few months, flushing my feeding tube, showering (which is its own laborious process when you have medical shit sticking out of your body), and corresponding with people.
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There are dozens of us, dozens!
Friday morning I met with the gentleman (we’ll call him Trevor) that the speech therapist put me in touch with, and we met at a local Starbucks to swap tales of woe.
He was diagnosed with a different flavor of head & neck cancer in 2023 and was about a year into his recovery; he had been seen by civilian cancer treatment providers at a hospital center south of the Army installation because, at the time, the Army hospital was short staffed. The only overlap we had in providers was the speech therapist, one of the ENTs we both see now, and the nurse case manager. We weren’t there to talk about that though: this was basically a gentle interrogation; I absolutely grilled him on treatment and side effects.
Trevor painted a grim picture. Neuropathy that made hiking on anything but a flat surface very difficult, limited range of motion in his neck, and he’d only recovered 50% of his stamina in the last year. This man works in special operations and his pre-cancer hobbies were mountain endurance races and long distance road biking; if anyone was going to recover quickly it would be him and the fact that he wasn’t scared the hell out of me.
He had to modify the trigger on his rifle so that he could feel himself pulling it, and he didn’t trust himself walking anywhere other than flat ground. He told me how he got severe infections and feeding tube failures that caused a few overnight hospital stays. He told me how he gets throat dilated because it isn’t healing correctly. What. The. Fuck.
No thanks, I’ll just die.
Trevor’s story wasn’t one of hope to me: it was one of survival. Like Hugh Glass scratching and clawing his way back to civilization. My morale was crushed.
I had a hunting trip that ended like this once.
Everyone I spoke to later that day tried to talk me back down to Earth and tell me things I already knew: Everyone’s cancer is different, everyone’s treatment is different, everyone’s response to treatment is different, and everyone’s recovery is different. I know all of these things, but, still… Jesus Christ man.
One of the silver linings from my discussions with Trevor was he began to dump resources into our text chat that I didn’t know about- different programs that might help speed recovery along if I can manage to get the Army to pay for it, or at the very least, approve the time off. Something to look forward to trying, at the very least.
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The Salvation Army
During the week covered in this entry I finally lit the beacons: I posted on Facebook ways people could help. Those that know me best know how difficult for me this was. I am typically a private person, at least digitally, and asking for any kind of financial help is almost unheard of. In fact, outside of my divorce, I can think of maybe only 1-2 times in my entire life I asked someone to borrow a significant amount of money.
Yes, I’m a Captain and, on paper, make good money, but I get absolutely butt-fucked by child support, alimony, childcare, and other divorce-related debt. So I still live on cherry lieutenant money at best. Couple that with living in a high cost of living area, and having to take on a live-in caretaker, and making large diet and lifestyle changes with little warning, and financial turbulence follows.
I decided to act, and made an Amazon “cancer wish list” for supplies I knew I’d need, or at the very least would make life easier during treatment and recovery. The response from my family, friends, and acquaintances was overwhelming and immediate. Within minutes the list started getting exhausted, and over the next week I was getting body-slammed by the post office, UPS, and FedEx. The amount of support people showed was surprising, and touching. People I hadn’t heard from in months, or even years, came out of the woodwork to send something I needed like the adhesive patches needed to take a shower with a feeding tube, or things to make my life more comfortable like a heated blanket.
If you’re reading this blog, and you want to help out, I would appreciate it if you made a donation to one of these organizations so that we can find better ways to prevent, treat, and cure cancer:
After meeting with Trevor I hit the road. I travel 158 miles to and from a Walmart in Oregon almost every Friday and Sunday to collect my kids from their mother, with few exceptions. The drive itself is manageable. Typically I listen to audiobooks, music, or catch up on the phone with people. Collectively in the winter time, it’s probably the largest chunk of time I have when I’m awake and alone in a given week. This is amplified now that my mom is living with me for the next few months while I navigate this chapter of my life.
This was going to be the weekend I told my oldest daughter about what was happening, within the limits of her ability to understand it, and I thought it was important that her mother was part of the conversation. After talking it over further, however, we decided to give it another week. The trick here was I had to explain to them that “dad has an ouchie on his stomach and you have to be careful.” Fortunately, that was the limit of their curiosity for the moment.
My daughter plays hockey every Saturday morning. It’s one of the few staples of normalcy she gets to cling to from her old life when her parents were still together. With my mom here this presents an opportunity for her to enjoy this time even more because now I can be more of an active participant in it. See, her brother is a ball of destructive energy that requires constant supervision or he will do something to kill himself or others through his acts of daring. This means instead of watching her play, I have to follow him around the rink to ensure he’s not causing a major incident or earning himself a trip to the ER. Enter grandma.
My mom has been a saint for this entire episode and the fringe benefit this early into the journey is some help with the kids. When you’re a single parent you are playing zone defense most of the time when multiple kids are involved, so it’s nice being able to play “man” and devote attention to one at a time. My son stayed home with his grandma and I was able to give my daughter the attention she needs and deserves from her dad in this setting.
In fact, because the rink staff is terminally shorthanded, I volunteered as one of the bench coaches for her game. At her level of hockey this means that I make sure everyone is taking turns as a goalie, they are getting in and out of the bench area on time, drinking water, gear is on correctly, and keep them from doing dangerous stuff on the bench. My daughter was thrilled to not only have me able to watch more than 10% of her play, but she could actually talk to me between shifts and be able to hear me give her feedback on the ice. Thanks mom!
I had a good weekend with the kids. I even got to take my oldest to the local junior league game thanks to a donation from a hockey family we know, and my daughter had the best time. She gets to watch hockey, talk to people, dance every few minutes, and hang out with dad. I get to watch hockey and watch her have a great time; you can’t ask for a better dad/daughter date.
(Author’s note: I don’t know if this is the penultimate prologue entry, or if there are more to come due to a recent development in my treatment plan that might throw a wrench into the timeline. Stay tuned, I guess?)
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
(Author’s Note: This is almost the end of what I call “The Prologue” as this entry will bring us one post closer to the present and what I’ll call the “Treatment” entries. Everything after will be as close to the present as I can manage.)
You’re Young Enough.
Trying to go to sleep the first evening back from the hospital was a chore. I’m not someone that can easily fall asleep on my back, and rarely on my actual side. Typically I sleep as if I’m in the prone unsupported position with a pillow under my arm to combat a pre-existing nerve condition I’ve been battling over a year called ulnar tunnel syndrome. On my stomach was a non-starter with the fresh tube hanging out of me, and the pillow was going to dig right into it. Fuck! On top of all the other jarring changes I just underwent, now I had to change how I slept, too.
“Basic Prone Unsupported Firing Position. This firing position (Figure 4-22) offers another stable firing platform for engaging targets. To assume this position, the soldier faces his target, spreads his feet a comfortable distance apart, and drops to his knees. Using the butt of the rifle as a pivot, the firer rolls onto his nonfiring side, placing the nonfiring elbow close to the side of the magazine. He places the rifle butt in the pocket formed by the firing shoulder, grasps the pistol grip with his firing hand, and lowers the firing elbow to the ground. The rifle rests in the V formed by the thumb and fingers of the non-firing hand. The soldier adjusts the position of his firing elbow until his shoulders are about level, and pulls back firmly on the rifle with both hands. To complete the position, he obtains a stock weld and relaxes, keeping his heels close to the ground.” – U.S. Army Field Manual 3-22.9 “Rifle Marksmanship
My exhaustion overcame me and I managed to fall asleep listed to my side like I was back in the hospital bed. My abs were still weak and would remind me of the new hole in them whenever I did anything resembling sudden movement, so I wasn’t terribly worried about rolling around. It wasn’t a very restful sleep; there was a lot of tossing and turning, but eventually this wreck of the Cancer Fitzgerald sunk into the bed long enough to have sleep that was unbroken by vitals checks and vomiting.
There was no rest for me, however, as I had referrals to go to the next day. First up was with the ENT Oncologist, a civilian specialist at a nearby civilian hospital. Despite the recommended treatment from the tumor board at the Army hospital, they hinged it on, “but still go see Dr. Shannon, we want to know what he thinks.” So here I was, crouched over my Army hospital-grade walker in the frozen parking garage of the hospital with my mom, inching my way toward a second opinion.
Dr. Shannon’s office was unremarkable… with the notable exception of my presence in the waiting room. Every other patient in the room was old enough to have one foot in the grave, and all of them stared at me at one point. Me in my walker just waiting to be called back; I could feel their bewilderment. This was as close to feeling like Rosa Parks in the wrong bus section as a young white guy can get.
After being called back I scooched my way into the exam room and sat in the upright padded exam chair for what I knew was going to likely happen here: another scoping.
When you get scoped, it means they are shoving a camera into one of your orifices to do a visual inspection. In my case, this involved taking a camera on a flexible metal hose, a little smaller in diameter than a soda straw, and sliding it up my nose and into the back of my throat to take a look at the tumor (see this post for an example of what a scope sees).
I was correct. Dr. Shannon scoped me, did an exam on my neck, and asked me some questions. He’d already seen all of my imagery from the Army hospital, and had spoken to Dr. Sierra about my case. What he thought about this was not only going to be factored into my care team’s decision making process, but my own, as he was a regarded specialist by them.
He recommended against surgery. Whew? I guess this is the part where I started to repair my battered trust in the medical establishment after the last 48 hours: This guy had nothing to gain by recommending I not do the very thing he and his hospital profited from. My ENTs were not certified to do this surgery, so it would have fallen to him, and he knew that. Yet, he agreed with their treatment plan to the letter, and explained why. In this world, professional ethics are under siege across society, and this man held the line. Bravo, Dr. Shannon, bravo. (I suppose it also didn’t hurt that one of my colleagues’ wife is his colleague and name-dropped me prior to the appointment. Hooray for serendipity.)
Next up was a ride to the Army hospital for my first meeting with the Medical Oncologist (Med Onc) chief, Dr. Ferrell. Dr. Ferrell was very highly regarded by everyone on the Army medical staff so far that mentioned his name. A “made man” of sorts, because not only had he been doing his job in the hospital for a long time as an oncologist, but he was also a full bird Colonel in the Army Reserve in the same capacity.
I once again sat in waiting room with my mother, where everyone else was 35+ years my senior and clearly had spent a lifetime around loud noises, as the two men talking to each other next to us demonstrated with their loud voices and the constant use of “WHAT?” I was again viewed with a curious eye as I plopped into the seat from my walker.
The Army is, culturally, a strange place. Army hospitals are not exempt from this. We have expensive, complicated, digital systems that store all of our information from clothing issue records, to administrative files, promotions, and yes, medical data. Despite this, either out of habit or convenience, many of these offices require paper forms to be filled out that force you to recall all of the information that could be pulled up in a few mouse clicks with the proper permissions. I was just about at the end of my rope with this.
I took one look at the very poorly photocopied forms and started to get into a bad mood, either from stress, frustration, sleep deprivation, pain, or some combination. I filled out the administrative data and wrote on them, “All of this information is visible in my digital record” and turned the forms in. One of two things then happened: either the clerk at the desk stuck the forms into some folder that will never see the light of day, or less likely, they understood they were just going through the motions with this practice and my small act of medical disobedience was understandable.
Dr. Ferrell came to greet us and walked us back to his office. He had the air of someone who was quietly, calmly, confident, but was ready to be proven wrong- my kind of guy. We talked through his role in my treatment: he was to oversee the administration of my chemotherapy treatment.
I absolutely hammered him with questions. This was the guy I really wanted to talk to since this whole thing kicked off and he was able to answer all of my questions, or at least satisfy my curiosity. He went over the treatment plan and told me I was going to get the most aggressive treatment for my cancer, because, “you’re young enough to handle it, and it’s unlikely we will damage your kidneys.”
I am so tired of hearing about how young I am.
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America, Tkachuk Yeah!
Cisplatin was the name of the drug I was prescribed in my treatment plan for chemotherapy, and I was prescribed the maximum dosage to work in concert with my radiation. Potential side effects: hearing loss, kidney damage, immune system degradation, hair loss, and sterilization. Another fun grab bag of side effects to mirror the hellscape that radiation therapy also presented.
It was at this time that the possibility began to creep into my mind that this cancer wasn’t just trying to kill me, it was trying to kill my Army career. Some of the side effects from the treatment of this condition are career-enders, in either a medical “chapter” (discharge) or medical retirement, and that wasn’t an outcome I’d considered until I had some time to piece that together in my mind.
Take one brick of stress off, replace it with ten more.
The next day, however, radiology oncology (Rad Onc) techs started to second guess some of the worst of the aforementioned side effects based on their experience when mapping me. They told me that a number of their head and neck patients kept their hair, and told me not to shave mine down preemptively like I’d planned, because it would screw up the mapping process later.
Mapping involved a few interesting experiences. I showed up, again with my mother who by this time was amassing a phonebook-sized folder of medical paperwork to tote with me to each appointment, and was called back by the two Rad Onc techs that would be handling my treatments. The only previous instructions I’d received were, “be clean shaven for mapping, and each of your treatments” and while I mourned the loss of my mustache, it was for a greater good.
I had to make a mouthpiece first. Anyone who has made a mouthpiece for contact-sports knows that this involves heating up a piece of solid mouthpiece-shaped rubber and then softly biting into it until it cools around teeth to ensure proper fit when you need to wear it. The second part of mapping was having a giant head and shoulder soft cast made from a pliable mesh material that also was heated up… to make a mouthpiece-type impression of my upper body. This process was very thorough, as this mask had to hold my head perfectly still each time at each treatment. Any margins or gaps would mean having to have the mask re-made and I’d have to be remapped. The mouthpiece I’d just made was clipped into the mask perfectly, and they tested the fitment of the whole system with a fancy machine that was similar to a CT in many ways. Last I was punched with a tiny tattoo of infrared ink on my chest for the laser to read each time, and that was it. Rounds complete: I was a ‘go’ at this station.
One thing I’m really glad the techs did prior to leaving was offer me a tour of the radiation therapy suite. I took them up on this and was guided into a room that looked like some sort of chamber from the Death Star. I suppose this is oddly appropriate since the cancer will likely view this the same way. There’s a flat table that a machine revolves around and shoots radiation in photon beams into the tumor. The whole process is supposed to last only a few minutes; you spend more time in prep and tear-down than you do actually getting zapped.
The next day I went on a date with Addison to our local junior league team and she’d gotten us seats just two rows up from the penalty boxes, which was a fun experience given how much fighting goes on at the lower levels of hockey. As previously mentioned, Addison is Canadian by birth and had a rooting interest in the “4 Nations Faceoff” tournament as Canada and the U.S. were playing while we were at this game.
I’d fully planned on leaving it alone, figuring Canada’s absolute star-studded roster would roll through every other team, so no shit talking would’ve bore any fruit, but once Canada went up 1-0 she couldn’t help but start in on how, “The U.S. needs to be humbled.” This coming from a citizen of a country that wins 75%+ of international hockey tournaments and still provides the plurality of NHL players was rich, so when the U.S. took the lead off of Dylan Larkin’s unassisted goal and then hit the empty-netter at the end to win, I let her have it. It wasn’t until after the game ended that the highlights rolled into my phone of USA’s Tkachuk brothers being two thirds of the fights in the first nine seconds of the game. USA, USA, USA! I let her have it the rest of the evening, and the following day, as Instagram put forth some wonderful reels equating them to the Smash Brothers from The Mighty Ducks franchise.
It was a critical morale boost as I began to truly contemplate what future me would look like.
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
I was being wheeled down to the MRI in my bed by one of the Internal Medicine LPNs, a junior enlisted soldier like most of the LPNs on staff during my visit, and greeted by three ladies that made up the MRI night shift from 11-12 February. I know I’ve referenced the “MRI” a few times now, but for the unacquainted:
“An MRI (Magnetic Resonance Imaging) is a medical test that uses strong magnets and radio waves to create detailed pictures of the inside of your body. Unlike X-rays or CT scans, it doesn’t use radiation. MRI is often used to look at soft tissues like muscles, organs, and the brain. It’s especially helpful for diagnosing problems that might not show up clearly in other types of imaging.” -ChatGPT
They needed to take a look at my liver to make sure the unknown mass seen in my PET scan was benign, or part of my cancer. If it was found to be part of my cancer my survivability odds would tank dramatically.
At this point I hadn’t eaten or drinken anything save a few ice chips in 24 hours. For someone with a strong metabolism like me this was hell; compounded by the physical and psychological toll I’d endured over the last four weeks with random fasting and diet restrictions laid on by different imaging instructions or procedural rules.
The MRI ladies adopted a, “work smarter, not harder” approach as well as a “let’s not fuck this guy up anymore than required” and my appreciation was eternal once I realized this. Despite being doped up by an injected painkiller that should have covered me for the duration of the MRI experience, I was alert and lucid.
A cloth gurney of some sort was laid under me, and the MRI team used it to gently slide me over from my recovery bed to the MRI tray. This really highlighted the stark contrast between men and women, even in the medical field: the men were going to brute force me as much as medically possible and insist I participate in some sort of capacity, but the team of smaller women (all three were petite and of various Asian ethnicities versus the aforementioned team of four large dudes from my last post) realized they needed to use mechanical advantage to not just physically move me but also make it as smooth as possible.
Once in the MRI tray I was packed in with all sorts of blankets and braces as I was to not move and they needed pictures of one specific part of me: the midsection. I don’t get claustrophobia but what I do get is nausea. About halfway through the imaging session I felt nausea rush into my head quickly. The neat thing about an MRI is it has a microphone so you can communicate with the staff. I quickly informed them I was going to be sick and that I needed to get out now (I literally couldn’t move my head to puke if I’d wanted).
The MRI team jumped into action and rolled me out just in time to remove some of my restrictions and put a barf bag next to me. I tilted my head to the side and began to dry heave; I had nothing to give.
Dry heaving requires a tremendous flex of the abdominal muscles, as I remembered far too late. Each heave sent me into spasms of pain as I involuntarily flexed my ab wall as hard as I could to meet the needs of my digestive tract trying to return something to sender.
Just as quickly as the nausea came on, it subsided and I felt perfectly fine. We gave it a few minutes and reset; they only had about 15 minutes worth of work left to go. Back to the grindstone (I contributed nothing other than breathing in and out when the voice told me to).
Just as I had been smoothly transitioned into the MRI tray, so I was slid back into my hospital bed. These ladies were true masters of their craft from top to bottom and this was probably the highlight of my hospital stay from a customer service perspective.
After being brought back up to my spot in the Internal Medicine Hostel of Excellence I was escorted to the bathroom and was alarmed to find the large volume of ice tea leaving my body, or at least that’s what the color of the urine suggested. I complained to the LPN that I was obviously dehydrated and the answer provided to me was a cup of ice chips. At this point I’m assuming ice chips are the Motrin of the LPN world.
I, figuratively, crushed that cup of ice chips. One after one I put them into my mouth to be dissolved, crushed, and swallowed; right as I finished I was brought yet again more useless oxy, an antibiotic, and an anti-nausea med… all to be taken orally on my terminally empty stomach. They gave me water to accompany these pills and no sooner did I swallow the pills did my body immediately reject them. I began to vomit medicine, water, and ice chip remains into my barf bag. I filled this bag nearly halfway with water and anything else my stomach could find to send up the hatch. I was getting pissed off now, they were not listening to what I was telling them this entire time- or at least not doing any critical thinking about it. I looked at the 2LT RN on shift and said, “Get me a Doctor, LT.”
Now, anyone who has been a Lieutenant knows that the inflections of “LT” are very important to interpreting the meaning behind what’s actually being said or asked. The inflection I used in this instance was intended to be interpreted as, “I’m done talking to you, go get a fucking adult.”
The night shift resident came to my bed and introduced himself. My mother departed several hours ago when visiting hours ended: this was mono y mono. He asked very simply, “What’s going on.”
“My piss looks like ice tea, I haven’t eaten or drank anything I could keep down in over 24 hours, giving me more medication on a completely empty traumatized stomach isn’t working. So why don’t you guys use this IV port in my arm to hydrate me and administer IV medications? Is that unreasonable?” I said, asking questions that we both knew the answer to.
“Those are both very reasonable requests, I will put in the order.” He said, and was gone just as quickly as he appeared. I’m hoping some mentorship occurred at the nurses station, but I’ll never know- perhaps they all made fun of the Captain dying of dehydration and turned me into a meme in their groupchat. I know that is probably ethical sacrilege, but it adequately describes my growing mistrust in my surroundings at this point in the story.
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A Rogue Blood Vessel.
Once the IV drip began and they shot the anti-nausea meds into it, I knew I was probably going to be ok. Despite all the pain and shenanigans up to this point, someone finally listened to me and addressed my needs. I don’t sleep on my back, so I had to list a little to my right and bring my knees toward my chest to form a modified recovery position. I dozed for a few hours at a time; only waking when my subconscious detected a nurse coming in to take vitals.
When I was awoken for the final time, around 0630, it was by the same IR doctor that inprocessed me the previous morning. He wanted to see how everything was holding together and how the pain was. The pain had significantly subsided as long as I remained still, and he checked their handiwork and started to talk about care and maintenance I was too tired to pay attention to. I spoke about the food situation from the day prior, and he said he’d talk to someone about it on his way out (he didn’t).
Before he left, however, he mentioned that my MRI came back, and that the spot on my liver was consistent with an enlarged blood vessel, a hemo-something, that was common in many people and typically only found if that person has a PET done. This means it was benign and not related to my cancer. This was a solid piece of news and lifted some large grains of stress off of my shoulders.
“You know, one less thing.” -Forrest Gump
The new LPNs rotated onto shift as well as a new doctor, right around the time my mother returned for visitor hours. The new doctor understood my predicament from the day before and said he’d change my order to reflect getting some solid food.
The social worker, the inpatient case manager, the nutritionist, and the outpatient case manager all happened to come by during the time it took to actually get food- a roughly four hour span. Progress was glacial, but eventually they gave me a shot of anti-nausea meds and placed a tray in front of me; I dug in immediately. I ate the cookie first because it felt like an act of civil disobedience. I know it made no difference which order things were eaten in, but it still felt good to push back on the norms of society in this place. After finishing all my food, plus four hours, I was finally discharged from Internal Medicine at 1630. Thank you eight pound, nine ounce baby Jesus.
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
There’s time where life imitates art, and there is time where it absolutely does not. Tuesday, 11 February was the latter.
Once again I parked the trusty Corolla in front of the entrance of the hospital where I’d go in and have another procedure done, but this time escorted by my fresh-off-the-plane mother instead of Rena.
I already knew that shows like ER and Grey’s Anatomy took tremendous liberties with hospital life and the medical profession, but they still do a tremendous amount to provide a framework to what you think something is going to look and feel like, and how your doctors or other medical staff behave. I still couldn’t help myself in believing medical doctors are our best and brightest, empathetic, and exercise excellent judgement- that’s my fault and I own that. However, when you have those, “ah fuck these guys are human too” it can be a little jarring. After all, up to this point I’d had world class care from my team of doctors.
What I imagine to be waiting for me anytime I walk into a hospital.
Interventional Radiation (IR) is the department at the hospital that is largely responsible for implanting medical devices into people’s bodies. It earns this name because they perform their procedures under live radiation imaging. I checked in at the window and was brought back by the IR nurse who looked like one of my old NCOs from my PL days at Fort Bliss. That NCO was not particularly intelligent so my anxious subconscious assigned those traits to this nurse. Fortunately, later he proved to be a highly competent professional, as I also perceived the entire IR department until I got into recovery.
I was sat down and told to take my shirt off and put on a gown, but that I could keep all my other clothing, even my shoes, on the entire time. I put the gown on but thought better of the shoes, as I wasn’t going to put my feet into coffins for my entire 24-36 hour stay. Remember that I am wearing a gown: this will be important later.
A nurse came in and pulled out an ultrasound and began talking to another nurse, “Yeah I want the 20 instead of the 22.”
The double edged sword of spending some time in medical settings is that you learn things that you’re better served not knowing. I know, for instance, that those numbers meant needle gauge given she was running an ultrasound on my arm to find the biggest vein she could for my IV. I also know that the smaller the number, the bigger the needle. I felt the difference, and it wasn’t pleasant.
I met with the IR resident doctor, who went over the procedure and what to expect after, and then waited to be brought into their operating room. I once again reminded my mom what the code to the safe was and where to find the spare keys if she couldn’t get it to work, and the same instructions that I gave to her prior to my biopsy. I wasn’t getting put fully under for this, but they were gonna goof around near my heart and that was enough to give her that information again.
After being wheeled back I was fully awake and alert for their prep, but as they began to administer their local anesthetic and the sedatives in my IV, I began to drift in and out of consciousness. I remember there were times that the drugs being administered caused my breathing to slow tremendously, and I know this because one of my few memories of it all was being told to breathe by the nurse several times.
I began my slow ascent to full consciousness in the recovery room. Immediately, I hated everything about what was happening to me. The pain was unbearable. I felt like my abs were being stabbed from the inside and underneath my ribs. I was sore, thirsty, hungry, tired, and restless all at the same time.
See, I wasn’t allowed to eat after midnight, or drink any clear liquids after 0500 for the 0700 report time and 0800 surgery. They also said they would not be feeding me for 24 hours after the procedure. Fun times ahead, folks, stay tuned.
Writhing in pain is something the IR staff did not anticipate. As I found out later, many of these doctors do not see young, healthy, in-shape 38 year olds get feeding tubes often enough for them to accurately predict what will happen when they do and thus, were caught off guard by what happened.
I was told by the lead IR doctor that people in my demographic typically have it “harder” when getting a feeding tube because our nerve endings are all woven into our abdominal muscles. If you don’t have particularly strong abdominal structures (read: fat) your nerves typically don’t get as pissed off as mine did. My nerves were absolutely letting me have it.
Another fun fact about me? I’m resistant to narcotics, as in, anything less than fentanyl my body casts aside as it would a placebo. They gave me short-acting pain killers to my IV to try and solve the immediate pain problem but their longer term answer was Oxy. This was a bad idea for two reasons: One, they gave it orally to someone who had an empty stomach (that recently had a hole punched in it), and two, they were fully warned, by me, that I have a high tolerance for narcotics. It was not effective. Wow, who could have possibly predicted that? Oh, wait, I did. Yeah. Me. I predicted that. Strike one.
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The Red Pill.
The pain didn’t subside much despite their stunted efforts at it. It would ebb and flow from within me the second one of the short-acting pain killers subsided. They were powerless to give me another dose of fentanyl because of what it did to my breathing, so they had no real choice but get my pain under control just long enough to wheel me up to Internal Medicine.
Internal Medicine is a bit like the hostel of the hospital. Rooms with four beds a piece with people under observation from other departments, or overflow recovery. Internal doctors are basically general practitioners whose job it is to keep the lights on and the patients alive on this floor of the hospital until they are discharged or collected by another section of the hospital.
My bed was wheeled up, and I still wearing my gown and a couple warm blankets over me, to my spot in the room. Four large men struggled to slide me from one bed to another, with each jolt and jerk shooting massive pain through my abdominal region. They didn’t think put a blanket or any kind of sling otherneath me, despite these options being readily available as later found out, and they actually insisted I help them fumble-fuck their way through transfering me into my new bed. The gown impeded the process every step of the way as it bound around me with every movement. I was in pure pain. Strike two.
The 2LT nurse looked at me with concern after being largely responsible for this disaster and its consequences; at least he felt bad. He managed to inject some high-power Tylenol to slow down my pain, but only bought us time to figure this out. They administered another dose of oxy and friends by mouth on my still-empty stomach, perhaps in hopes that I’d miraculously lower my narcotics tolerance. I did not.
The shooting pains from under my ribs did manage, on their own, become less and less and settle into a dullness. It was around this time that LTC Sierra and her deputy MAJ Flood came by to see me at my request to talk about what just happened, and to examine the lump. I was complaining that the pressure it was exerting on my jaw was becoming more noticeable instead of latent or only present when turning my head to the right. They speculated my second lymph node was likely growing in size but that I shouldn’t be concerned. We talked over referrals, more questions of treatment, and they went on their way. I was in a better mood after they left- I’m always glad to see them now.
Remember the famous scene from the Matrix where Neo can take the blue pill and return to being oblivious in the Matrix, or he can take the red pill and “wake up”? The rest of this stay was going to rip off whatever illusion I had left that hospital staff had it together more than the rest of us. I guess they snuck the red pill in with the rest of them.
Whoa.
My pain was a concern for a secondary reason to the doctors and staff: I had to have an MRI later that evening to examine the mass the PET scan caught in my liver. They began to scheme ways to make me as comfortable as possible prior to going down for the MRI. The answer they came up with was only slightly more inspiring as the sun disappeared and the MRI appointment approached: more oral meds and an injection into my IV port (I’d been without an actual IV line since morning) to keep my body calm just long enough to complete the MRI. Strike three. The last scraps of “this person is a highly trained professional and has surely thought through all of this” was discarded as soon as I arrived at the MRI suite.
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
There are going to be topics we circle back and revisit out of order from time to time, because when you don’t decide to write a cancer blog until eight weeks after first detection, things are lost in the whirlwind of activity that happens during the opening salvo of medical intervention.
Rewind to 1 February. In Ireland, and places with other strong Irish-Catholic communities, there is the “St. Brigid’s Eve” tradition.
“St. Brigid’s Eve, celebrated on the night of February 1st, which is the eve of the Feast of St. Brigid. In Irish folklore, St. Brigid is considered one of the patron saints of Ireland, and her feast day marks the beginning of spring and the Celtic festival of Imbolc, which celebrates the coming of the lighter, warmer days.
One of the customs associated with St. Brigid’s Eve involves hanging cloth or rags on a tree branch or a bush. This is often done as part of a ritual to honor the saint and invoke her blessings for the year ahead. The act of hanging the cloth is meant to symbolize the blessing of the home and protection from illness and misfortune, as well as a way of asking for a bountiful year.
St. Brigid herself is often associated with healing and fertility, so people believed that by hanging cloth on the branch, they were invoking her powers for good health and protection. In some variations of the custom, people also would tie pieces of cloth to the branches and leave them for the night.” -ChatGPT
One such place that this tradition is celebrated is Newfoundland, Canada, where Addison is from. We were walking into my house the evening prior to the Vancouver visit and she said, “Shit, I almost forgot.” and proceeded to take off her cloth wristband and tie it to one of the shrubs in front of my house.
Me, puzzled, “What are you doing?”
“It’s Saint Brigid’s Day, we are going to leave it on this bush tonight and in the morning you are going to wear it for the rest of the year to bring you healing. It’s Newfie Irish-Catholic woo-woo shit,” she said, matter of factly.
In the morning, as we headed out the door to go on our trip, she took it off the shrub and put it on my wrist. I figured at this point I’d take all the help I can get and, if nothing else, it would make her feel better.
Fast forward a day. 3 February was like most other Mondays where I roll into the office and get hammering on whatever task I was dealt for the week. My boss had already begun to slide things off of my plate and had all but cancelled my two-week trip overseas happening later in the month, so my task list was shrinking with every new piece of medical information coming to me. I kept chipping away at my inbox when I got a text from my mom: a link to some sort of Catholic site describing Saint Blaise Day.
Mind you, just prior I’d found out my official diagnosis and biopsy results, so I’m fully invested in getting as much help from every dimension possible, including the spiritual one. I clicked the link and uttered, “No fuckin’ shit?” when I noticed that this day, 3 February, was Saint Blaise’s Day.
“St. Blaise’s Day is celebrated on February 3rd and honors St. Blaise, an early Christian bishop and martyr who is the patron saint of throat ailments. He is also associated with protection from diseases of the throat, and his feast day is marked by a special blessing known as the Blessing of the Throats.” -ChatGPT
I knew what I had to do: I had to embrace the woo-woo and unknown mysteries of the universe. The coincidence was too real for me at this point, I was on a mission from God.
I walked to the staff duty desk and asked where the command Chaplain’s office was. It was just across the parking lot in the basement of another building. Much of the “Special Staff” in my unit exist in such circumstances, and the man with the connection to The Man was apparently no different in this regard. The only Chaplain in the office that late morning was The Command Chaplain. As in, a full-bird Colonel, but he’s a Chaplain, and like most, very affable despite our rank disparity.
I knocked, and with a big smile he welcomed me into his office. I gave him the elevator speech about my cancer, the holiday, and that I needed to find a Catholic Chaplain by close of business (COB) today.
Understanding the serendipity of this encounter, COL Chaplain went to work tracking down a Catholic Chaplain. About an hour later I get a text from an unsaved number:
“Kyle, this is Father Houseman, COL Chaplain sent me your number. I’m sorry to hear about your cancer! What times work best to meet?”
God may not always be responsive, but his staff sure is. We worked out a time to meet that afternoon to perform the blessing at the Main Post Chapel.
Something God’s staff also does particularly well is physical security. Every fucking door on that chapel was locked at 1630. I found a door that was open in the office wing of the chapel, however, and roamed the halls of the empty wing of God’s cubicle farm before finding the main hall with the rows of pews, pulpit, altar, the whole shebang. It was eerily quiet. I expected my presence would draw out Arnold Scwarzenegger like it was the last scene from End of Days.
See, I’ve always, at best, had a rocky relationship with the almighty. Unknowable things have never really sat right with me and I always treated the religion with a high degree of suspicion. Like, if this dude really exists why doesn’t he show himself? What is he hiding? What’s he have to lose by making it obvious to us that he exists? This skepticism has served me generally well in life, but the older I get the less other explanations previously thought more plausible by my scientific mind start to make sense. My relationship with spiritual things now can best be described as, “Hey, listen, there are a lot of things we can’t explain, will likely never be able to explain, and however you interpret that is fine so long as you aren’t infringing on the rights of others to believe what they like.” That’s how I’ve sort of found peace and balance with what some call spirituality.
I digress. Father Houseman entered the building from… somewhere, perhaps he materialized like the nun from Blues Brothers; I’m not sure- I didn’t ask how he got in. I approached him and we got right to chatting. One of the first things I noticed was his age: He was incredibly young. Easily ten years my junior. It was sort of odd calling this man Father, but I understood the assignment.
He pulled out the candles, the appropriate literature, and uniform items needed to make St. Blaise’s throat blessing a “Go” at this station. We got down to business and he instructed me on when I needed to speak and what I needed to say. He completed the ritual and we chatted some more. I walked out of the chapel feeling like I did one of the few things I could do without the help of a doctor to fight this thing: I enlisted the entire might of the Roman Catholic church through St. Brigid and St. Blaise. Fuck yeah, winning.
============
The Tube.
Continuing from the end of the last entry, MAJ Rafferty wasn’t quite done grinding my view of the phrase “quality of life” into dust by explaining the back-end of long term consequences of the chemo & radiation tag team.
“So, because we don’t like to operate on you while you’re being treated due to the risk of bleeding, we’re recommending you get your chemo port and feeding tube placed immediately,” he said, looking at me to gauge my response.
My. WHAT?
Because my throat is going to turn into a fiery red hellscape of pain and misery, they were concerned I’d stop being able to eat by mouth and lose a tremendous amount of weight, an unhealthy, dangerous amount that would significantly lengthen recovery. A feeding tube, pre-installed, would nip this in the bud by cutting out the middleman (my mouth/throat) and giving me life while simultaneously destroying my will to live, because if you are 38 years old with a feeding tube, the plan you had for your life has gone horribly wrong.
They explained the feeding tube was only temporary, probably, and I’d be able to get it removed early in recovery if I managed to maintain my weight through and after treatment.
Alright boys, fucking bet, challenge accepted. Feeding tube is up there with a colostomy bag on the checklist of shit-gone-wrong that would cause me to volunteer for the Ukrainian Army. I will maintain my weight so hard.
I walked out of that meeting with a parade of referrals to schedule, and a horrifying outlook on life. Life before, during, and after treatment was going to be radically different and I had four days to live my best life.
I spent three hours of that time wandering around the hospital scheduling referrals. See, when you are an active duty cancer patient, appointment hotlines and long wait times don’t exist. You can walk into any office, announce you have cancer, and shit all over the plebs with routine illnesses. You’re the king shit of hospital mountain. It was so backwards from anything I’ve experienced with medical scheduling in my entire military career up to this point, and it was glorious.
I went back to the office after that because my coworkers had, to my complete pretend-surprise, barfed Party City all over my desk and coaxed me back into the office long enough to sing happy birthday to me and feed me cake. I don’t even like cake or most baked goods, but it’s bulking season, remember? They’re good people, so I played my part with a smile, even though my soul had been absolutely dismantled that morning after the Tumor Board.
Oh yeah, I forgot to mention. My birthday was also that weekend. Whoo, party. #lastbirthday?
============
Like a sheet of glass.
After leaving the office party, I hit the road to get my kids. I travel about 700 miles per week, almost every week, to get them from their mother in Oregon. Why this is the arrangement is for another day, but we tolerate it pretty well, so it is what it is for now.
My tube and port installation was scheduled for the following Tuesday morning, 11 February, so I knew this would be the last of the fully-normal Dad time they’d be getting.
As I drove down Friday I spoke with my mom on the phone, who is another hero of this story up to this point. She said she was coming out to take care of me and help with the kids during my treatment, the only question was when she was coming out. We deliberated and decided it would be best if she flew in on Sunday or Monday so she could join me for the installation, recovery, and battery of pre-treatment appointments leading up to that time. She booked a one way flight to Portland on Sunday evening so I could get her on my way back to Washington.
The kids were still blissfully unaware of anything at this point, not dads illness, not grandma spending a few months with him, nothing. At the time of this writing, they still don’t, but that time is quickly approaching.
I was able to get them an hour earlier than normal so we got home in time to do their normal bedtime routine and prepare for the next day. On Saturdays my daughter has hockey, so we woke up and went out to that as we always do.
By this point the word was out to my extended circles. I was wrangling my toddler son, talking with friends about my condition, and watching my daughter play (watching her skate out there is the joy of my life). I was starting to experience some fatigue talking about it again, for what felt like the 50th time in two days, so I started to isolate myself in the corner of the rink to watch my daughter.
Curiosity and concern are very natural human conditions, so I don’t blame the people close to me for wanting to know more, but it does get taxing having to have these conversations over and over again after having just lived them. Now I live in this weird space of, “how can I show this person I appreciate their concern without having to make this stump speech again?”
After getting home my daughter baked some cookies, as has sort of been a little tradition of ours every few weeks, and we played the tic-tac-toe bean bag toss game in the living room. Some friends of ours hosted us for an hour or so that afternoon so I could get the kids some outside-the-house social interaction, and since these friends had already heard the cancer spiel and knew I wouldn’t talk about it in front of the kids, I knew that was a space of time I was safe from having to think too much about it.
Me and the ex agreed to meet outside PDX at a later time so the kids could see Grandma for a little bit and I’d be able to spend some quality time with them on a Sunday at my place beforehand. See, Sundays are normally a, “ok, get up, eat, get ready, go somewhere like a playground for an hour or two, then hit the road by lunch” routine, so it was nice to be able to relax and eat lunch at our house here before getting on the road.
The kids were elated to see Grandma for the first time since the summer, when she stayed with us for two weeks to help me not have to find childcare for my block of summer break visitation. We wandered around the Target right outside PDX for almost an hour waiting for their mom and it was relatively stress free- it was Super Bowl Sunday and Target was a ghost town. I could let them run wild in the store and not be that parent because there was simply no one else there to be bothered by it.
I knew I had less than 48 hours of freedom when we returned to my house on Sunday evening, and I intended to do the one thing I knew I’d miss doing the most: play hockey. I found that my local rink would be having a “stick and puck” (open skate specifically for hockey players) session Monday morning and I hit up my team’s group chat asking who was in for the “last skate” before I started treatment. In reality this will likely have been my last skate until well after recovery begins due to the ramifications of this specific treatment regimen.
Monday morning rolled around and I drank my last cup of coffee for a few days, grabbed my bag, my sticks, and went to the rink. Four of my teammates showed up and something fantastic happened: No one else was there. We had the whole sheet to ourselves. What’s more, the rink staff actually cut the ice the night prior. It was smooth as glass and ready to be carved up. No divots, no cracks, no grooves in sight.
Me and the boys dumped a crate of pucks and began fucking around with skating, shooting, handling, and eventually they started to indulge me by letting me 1 v 1 and 3 v 2 them on defense (I primarily play defense). It was going to be the best hour of my week, which sounds great… but the week had just started.
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
I’ve not gotten nauseated by the (now) two times I’ve been under general anesthesia, but I sure do get dizzy as shit when I stand. Rena was able to get me into her small SUV with the help of a volunteer at the hospital, but getting from the street to my house took a little more of a coordinated effort. My frame dwarfs hers and it was like one guy trying to move a large box that barely fits through a doorway solo: technically possible, but not advisable if it can be avoided.
She put me into bed and started a medicine journal for me. After some dozing, I joined her on the couch and we started watching “American Manhunt: OJ Simpson” on Netflix. I vividly remember the OJ Simpson trial as a kid in the 90s: the courtroom drama, the main cast of witnesses and their tabloid exploits, and of course the white bronco. Sadly, this was the one part I wanted to see the most and I managed to doze off for only that episode. Not doing anything besides being put to sleep and cut open is absolutely exhausting.
Eventually Rena passed me off to someone we’ll call Addison for now. Addison and I had just started dating and despite everything going on with me, she was still subscribing to the idea that I might be worth trauma bonding with over this experience. She even shopped with me the night before the procedure to make sure I had throat-friendly foods to survive off of for at least a few days, and kept me from buying more than one thing that were poor investments to this end.
Addison kept up the maintenance of my medicine schedule and kept vigil until the evening. Because of my prolific napping during the day, I’d managed to stay up well beyond my normal bedtime but eventually managed to go to sleep.
Rena once again escorted me back to the hospital for a follow-on ENT appointment two days later with LTC Sierra. She basically reaffirmed she had no reason to change her opinion on the findings despite Pathology not having completed the biopsy yet, and began to run down the complete cast of characters I was about to see in the coming weeks through referrals and referrals from my referrals.
We need to go deeper.
============
Your average law enforcement interaction.
In preparation for the eventual official diagnosis I made plans to go to Canada with Addison. See, she’s actually Canadian and was floored that I’d never been, what with having spent so much of my life in states bordering the great white north. My Detroit Red Wings were on their western North America road trip and this was as good of time as any to go see them. Hell, for all I knew it was the last time I was going to get to see them. I found us reasonably priced tickets, and she was going to be my chaperone as we made our way to Vancouver (she likes to joke that this was actually the second time I’d been in Canada).
Fortunately, I made the call Saturday that I was feeling well enough to travel because my sore throat was just about gone and I was able to choke down (bland) solid foods. Mother nature gave us her best shot as we braved significant snowfall all the way up I-5 in her seasoned RAV4, but we made it to the border where Canada was rolling out the red carpet on the heels of the Trump tariff announcement.
I handed the Canadian border guard our passports, answered the line of questions your average American would expect from law enforcement, and went on our way.
Addison immediately turned to me and said, “Wow, I’m sorry she was so extra; that’s more aggressive than anything I’ve experienced before.”
Me, visibly confused, “What do you mean? That is about what I expected…”
Addison explained to me that what I found to be a very standard law enforcement interaction was, in fact, incredibly unusual and that I was treated with undue hostility. I was still amazed that we were the only car at the gate for the entire interaction and that no one was visiting Canada or even returning home on a Sunday afternoon.
We had an absolutely amazing time checking out the Grandville Island district, checking to see if the rumors were true about Canadian Costco carrying bulk hockey gear (fake news), and heading into the arena.
Something you need to understand about hockey, if you’re unfamiliar, is that both anthems, Star Spangled Banner and Oh Canada, are played if one of the teams is from the other country. This is fairly standard practice across both nations, and the crowd sings, or is at least respectful of, both anthems. Because of the tariff announcement, two Canada games from the previous night involved the crowd booing the U.S. anthem. This is almost unprecedented, as there are even documented instances of both anthems being sung by the opposite crowd when PA systems fail. You have to understand and appreciate hockey culture to really understand how fucking angry fans have to get to break with this tradition. This is peak hockey civil disobedience.
Vancouver fans are generally the rowdiest of Canadian fanbases, and they had a whole 24 hour sports news cycle to soak this up. I was expecting boos during the anthem, but Jesus Christ. It was loud, it was uncomfortable, but I held my hand over my heart and my lips shut and stood respectfully silent for both anthems. I mean, I get it, they have a right to be upset and symbolically voice their distaste. Of all forms of protest, this was pretty innocuous if the other end of the scale is blocking an interstate highway.
Fortunately, it was a fairly standard hockey crowd and even leaned, perhaps, at least 20% Red Wings fans. Despite dealing with the stress of an overtime game as an “away” fan in my weakened state, it was an overall good experience and I’d go back.
We eventually made our way back south, and got caught in the throng of Americans returning home for the weekend where we experienced a very cheery, albeit short staffed, American border crossing guard that lightly roasted Addison for admitting she didn’t buy me anything.
The next day I was officially diagnosed with cancer.
============
My tumor has more civil rights than the average North Korean citizen.
I saw the pathology report in Genesis the moment before LTC Sierra called me. It confirmed everything she’d hypothesised up to that point: oropharyngeal squamous cell carcinoma with p16 marker, meaning HPV related. Congrats on being one of the fewer than 30,000 people, overwhelmingly men, that get this a year, Kyle! The good news, if it can be called that, was that because I wasn’t a smoker or drinker, my flavor of cancer was much more responsive to treatment.
What does that mean? I was being referred to the following for evaluations and preparation to find out:
Radiology Oncology
Medical Oncology
Speech Therapy
Nuclear Medicine
ENT Oncology at a nearby civilian hospital
Nutritionist
Behavioral Health
Social Worker
Case Manager
Genetics
I could hear the appointment wait line music start to play in my head.
“All of these people will call you, you shouldn’t have to chase anyone down,” she said as visions of appointments danced in my head.
The tentative treatment plan would be surgery, radiation, and chemotherapy but the “Tumor Board” (this is not a euphemism for the chain of command board in the company HQ, as PFC Cancer would have cracked a joke about earlier in his Army career) would convene on Friday to “stage” me and formally recommend treatment. This would all hinge on the results of my “PET scan,” which was a type of scan designed to see if the cancer had spread to any other parts of my body. Cancer in other parts of the body = Fire up the John Cena tracker.
The Tumor Board is all the heads of state of the relevant departments; in my case ENT, Radiology, Radiology Oncology, Medical Oncology, and Pathology coming together and voting on a plan to present to me for approval. There’s even meeting minutes, of sorts, in my Genesis records.
They presented their plan to me immediately following the meeting, at my previously scheduled onboarding appointment at radiation oncology: No surgery was being recommended, but still to see the ENT Oncology civilian expert to get his opinion. I was being told radiation and chemo were my path forward, but that I was free to ask Medical Oncology their thoughts next week on immunotherapy. The silver lining, of sorts, was that the PET Scan didn’t reveal anything but some, probably, unrelated scarring on my lungs and a mass in my liver that was probably a benign rogue blood vessel, but I’d need a separate MRI of that just to be sure.
Let me backup and explain the PET Scan real quick, with the help of our friends at ChatGPT:
“A PET scan (Positron Emission Tomography) is a type of medical imaging that helps doctors see how your body is working, rather than just what it looks like.
Here’s how it works in simple terms:
A special substance (called a tracer) is injected into your body. This tracer contains a small amount of radioactive material that can be tracked.
The tracer moves through your body, and certain parts of your body (like organs or tissues) use it. The tracer gives off tiny particles called positrons.
A scanner detects the positrons as they are released, creating images of where the tracer has gone. This helps doctors see areas with changes in activity, such as tumors, infections, or problems in the heart or brain.
In short, a PET scan helps doctors look at how things are working inside your body, not just the structure, by using a special tracer and detecting the energy it gives off.”
What happens in reality is you show up to Nuclear Medicine after 24 hours of only being allowed to eat plain meat or solid plain cheese and water, in your comfy clothes, get an IV placed into your arm and brought into a room with dim lights, no sound, and a warm blanket. The rationale here is that a stimulated brain and shivering muscles will absorb the radioactive material you are getting injected with, which is universally seen as bad.
Just in case you glossed over the first few mentions: you are literally getting injected with radioactive sugars. The tech brought it into the waiting room in a lead-lined case, in a lead-lined syringe and injected it into my IV. Awesome, at least if I have cancer I also may develop superpowers for a short time as a result.
Then you lay in yet another MRI-esque scanning tube to get your PET and another round of CT with contrast. After the CT with contrast my face had a reaction to the contrast, which was a slightly itchy face and the slight look and feel of being sunburned. I am just glad I didn’t get actually cooked by the scan- it would be a real bummer to have cancer and radioactive blood to go along with a sunburned face.
Fast forward back to Radiology Oncology.
Radiology Oncology itself is quite possibly the scariest appointment I’ve been to to date. Everything being described by the Dr, a jovial fellow we’ll call MAJ Rafferty, was horrific to my non-medical mind.
After every disturbing side effect of radiation and chemo was listed, it was always capped off with, “…but your type of tumor will just melt away by the end.”
Fortunately, he did place a referral to the nearby highly regarded cancer center called “Fred Hutch” to see if a different kind of radiation might fit the bill better, one generally given to pediatric patients but, once again, because of my age, I may be a candidate for. The perks of being “the youngest we’ve seen” I suppose.
The next entry of this journal will be somewhat delayed, the reasons for which will be covered in the next journal entry.
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
I actually ended up having my Ear, Nose, and Throat (ENT) specialist appointment at noon on 29 January. Walking in, I’d already knew what to expect to some degree, however.
One of the benefits of the beleaguered Military Health System “Genesis” portal is the centralization and digitization of all your medical records as soon as they are entered into the system. I saw the radiologist’s report of my CT scan, and unprompted, CPT Bennett had called me earlier that morning to see how I was feeling. She read the notes and saw the big scary “T word,” tumor in the notes. She mustered her best positive, but grounded, reassurance that it may still be something else… but I’d been too deep down the rabbit hole at that point. I’d spent a couple days reading up on lymphoma. Hey, grandma had it and beat it, so I should be fine, right?
Enter CPT Bruner, the resident ENT that was my first contact in the ENT clinic. She was affable, professional, and upbeat while preparing to, and then running, a camera down my nose into my throat. I had no idea if you could see my lymph nodes from inside there, but I’m a Public Affairs Officer, not an ENT, so I did what I was told.
After about 90 seconds she withdrew the scope and showed me the replay. She paused it at 56 seconds and pointed at something, “That right there on the left, see how it’s asymmetric with the other side? That’s consistent with what we are seeing on the imaging. Your lymph nodes are absorbing cells from that.”
This is widely regarded in the ENT community as sub-optimal.
I was grinning with nervous laughter as she calmly explained to me that everything I was experiencing was consistent with a “oropharyngeal squamous cell carcinoma” which is a type of cancer of the throat and neck.
I’ve cried real tears a handful of times in my adult life. Losing a pet, losing my grandfather, the darkest day of my divorce, and now this. When she asked, “Is there someone you want me to call and talk to and explain this too, like a parent?” I melted into a puddle of tears. No, I don’t want you to explain this to my parents, I need to know how I’m supposed to explain this to my daughter, to my kids.
I’m 37 how in the fuck do I have cancer? I’m not a smoker!
She wrote the name down on a little note for me and left the room. She walked back in with a woman that looked roughly my age, LTC Sierra.
“This is LTC Sierra, the chief of ENT and she wants to look over you and answer any questions you might have,” CPT Bruner explained. Exit stage left CPT Bruner, this was now LTC Sierra’s show as I was about to find out.
After her own exam, she basically repeated everything her junior partner had said. I knew I was “cooked” as the youths say. I didn’t have many questions. I went in there expecting to be told I had lymphoma, not some other wild bullshit.
I’m not a smoker and barely drink, why is this happening?
“We can’t say for sure without a biopsy, but given that you’re a never-smoker, not a drinker, that leaves us with some strong guesses based on your age. This may be due to HPV exposure, but since we have no way to test men for that like how women get their annual pap smear, we need to biopsy the tissue just to be sure. So what are you doing tomorrow morning?” LTC Sierra asked, barely concealing the sense of urgency this now took on.
Nothing. I was doing nothing. This was now the only thing I was doing until I wasn’t.
Of course, I had work to do, but I knew as soon as I dropped the news on my boss that she would clear my plate. A Soldier that has a major life issue is seen as distracted at best, depending on the issue, and a liability at worst. This is a fact of life in most careers, but amplified in the Army where there is still a lingering negative stigma around people who fill their calendar with medical appointments. This was not the culture of my office or leadership, but when you’ve been in the Army as long as I have, the biting sensation of that stigma remains no matter how legitimate your issue.
The chief of ENT was signing me up for surgery at 0600 to perform four biopsies, and needed my consent to remove at least one tonsil (this type of cancer is sometimes referred to as “tonsil cancer.”) I needed to have a driver show up with me and be on hand at the end to pick up my meds and drive me home.
Enter the next hero in our story, Rena.
Between the doctors and nurses coming in and out I was on the phone texting people on a “need to know” basis. My boss, my parents, a couple group chats, and Rena.
See, Rena is the only other young person I know that had cancer. She’s a breast cancer survivor from when she was 27 years old. She’s also on my co-ed hockey team and is one of my daughter’s surrogate moms from the rink (when you’re a single dad and have a little girl that plays hockey, all the boy moms that don’t have daughters adopt yours by proxy). Her husband is a stand-up guy and fellow veteran to boot; I’m like a rental brother-in-law to their small family.
“Hey, I need a ride to the hospital tomorrow at 0600, will that fuck up your life,” I asked, on my way back to my office.
“No, I will talk to Jeff and we’ll figure it out,” she said in a conversation that lasted about 15 minutes.
While I didn’t have an “official” diagnosis, both ENTs and the radiologist were confident I had cancer and that this was the one that was causing the lump. I was slowly collecting the cancer Infinity Stones of specialty doctors to confirm. Next was pathology.
Rena arrived at 0500 sharp to my house and we made our way into Madigan; most of the discussion was centered on contingencies in case a catastrophe occured. She was to keep my parents updated of any significant events, but otherwise just be ready to drive me home after discharge.
We arrived at the surgery waiting room as the first people in. Slowly it began to fill up and names began to be called. I even saw my old boss while waiting, who was there to get dead guy shoulder parts installed. I told him if I didn’t make it through this he could have mine since they were probably fresher and in better overall shape.
I was taken back where I was given a diagnostic, changed into hospital attire, and placed in a bed. Then the black parade really kicked off.
First up, my nurse for the day confirmed who I said I was and what I expected to happen. After signing and initialing a bunch of “don’t sue us, bro” forms, the anesthesiologist rolled in. He asked his battery of questions and I mentioned that I had a high tolerance for opiates. He stopped, glared at me, and said, “I will win.” Then, feeling his point was made, left.
No sooner had he left than LTC Sierra, CPT Bruner, the other ENTS, and a gaggle of interns and residents from other specialties filed in. This is when it first hit me that my age and condition made me somewhat of a science project, an oddity, something worthy of show-and-tell. At the time I interpreted this as, “Hey, look at our cancer kid! John Cena will be here any day to set his pyre alight!”
This, of course, was not at all their intention- after all this is a training hospital- but the longer this process goes on, the more I realise I’m probably going to end up as a data point in someone’s dissertation or study.
As soon as the parade of doctors left, I was stuck, laid back, wheeled out, and faded into oblivion.
I returned to reality feeling like I’d just been high-sticked. The inside of my lips were chewed up from the intubation, my jaw was sore, and my throat sorer. I was, however, still heavy a pair of tonsils. Hooray for small mercies I guess.
LTC Sierra came over, asked me how I felt, explained in detail what happened, and if I had any questions.
“Is it what you think it is?” I asked, still slightly drowsy.
Her face changed. Almost like I’d asked if her dog had been run over by a car when we both damn well knew that it had. She just looked at me and nodded. That was the only answer she offered, and the only one I needed.
Well, fuck.
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
CPT Cancer 
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