CPT Cancer

A journal about the intersection of military life, cancer, and being a single dad.

Tag: Oropharyngeal Squamous Cell Carcinoma

  • Treatment Part 1: Week One

    (Author’s Note: I am typing this under the influence of chemotherapy, please be gentle on spelling/grammar/formatting errors)

    Hard Conversations

    I finally had the conversation with my daughter. I had no idea what to expect, but after speaking with a social worker and her teacher beforehand I went in and felt like I was prepared for most outcomes.

    She’s been through a lot in the last couple years. Her parents getting divorced, moving five hours away, and the ups and downs of the men her mother brings into her life (she has never met any of the women I’ve dated, let alone even had the idea I was dating anyone, for perspective). I knew this could be another tough pill for her to swallow.

    I kept looking for opportunities for us to tell her together, but window after window kept closing and I knew I was finally out of time- I had to tell her myself.  My mother had returned from Florida and was able to occupy my son so I could have the difficult conversation relatively uninterrupted. 

    She took it very well, partially because I don’t think she understands the gravity of “cancer” but she understood that it is serious and that the medicine they have to give me will make me sick, too sick to visit sometimes, and that her getting sick would also mean she couldn’t see me because I could get really sick from her. “Sick” and “medicine” were baseline terms that I used to explain just about the entire situation. There were a few misty eye moments but nothing she didn’t choke back on her own. Overall, it was a successful conversation about a difficult subject. Thank goodness for small wins.

    ============

    Day Zero

    Monday was spent gathering last minute supplies, doing my pre-chemo lab draw, and knocking out other small tasks that needed to happen prior to my treatment.

    The military hospital is one of many teaching hospitals in the Army’s medical arsenal, and my phlebotomist was an AIT (military trade school) student being overseen by a Sergeant. I have a strong sympathetic response and I had a feeling I was going to be out of this young soldier’s depth. I was correct. 

    I have, by all accounts, great veins. I’ve never had someone “miss” the way this young soldier did. After one failed stick I was out of patience, because mentally this was not the day for this adventure for me, and I looked at the Sergeant and said, “OK, she’s done, you’re up.” and got my draw done promptly.  Normally I’m a good to decent patient for students, but today was not that day. I wasn’t spending my last day of freedom getting my arms mangled by Private Pincushion.

    ============

    Day One: Chemo 1 & Proton 1

    I woke up, loaded my cooler (I brought cooling mittens, booties, and a beanie with gel packs in them because I’d been told it’s one way to fight neuropathy and hair loss), and packed up all my things. We drove to the Army hospital and parked in our designated spot, reserved for infusion patients, and began the long walk toward the end of the first part of my life. I knew, and know, this is one of the watershed moments that I will use to demarcate my life in the future.

    After spending some time in the waiting area, I was brought back, the chemo port in my chest was accessed with a needle, and I was taken to my chair. They are oversized power recliners with hospital trays nearby. They gave me a cup full of pills and began running a liter of potassium chloride into my body through my port- apparently this chemo agent is hard on the electrolyte count. As soon as I exhausted that bag they got me started on my 1000ml (100mg) of Cisplatin chemotherapy the clock was on. I began diligently putting on, taking off, and reapplying my cold packs in between windows of time watching 1917 on my iPad.

    I received the highest dose of Cisplatin they can give a person due to my age and fitness level, and I sat there and watched four other patients come and go in the time it took me to get my dose, ostensibly older and only getting weekly doses versus my three-week dose.

    “Cisplatin is a chemical compound with formula cis-[Pt(NH3)2Cl2]. It is a coordination complex of platinum that is used as a chemotherapy medication used to treat a number of cancers.[3] These include testicular cancer, ovarian cancer, cervical cancer, bladder cancer, head and neck cancer, esophageal cancer, lung cancer, mesothelioma, brain tumors and neuroblastoma. It is given by injection into a vein.

    Common side effects include bone marrow suppression, hearing problems including severe hearing loss, kidney damage, and vomiting. Other serious side effects include numbness, trouble walking, allergic reactions, electrolyte problems, and heart disease. Use during pregnancy can cause harm to the developing fetus. Cisplatin is in the platinum-based antineoplastic family of medications. It works in part by binding to DNA and inhibiting its replication.

    Cisplatin was first reported in 1845 and licensed for medical use in 1978 and 1979. It is on the World Health Organization’s List of Essential Medicines“     -Wikipedia

    One thing they tell you to cut out when you start chemo is coffee, because caffeine dehydrates you, and chemo doesn’t need any assistance in dehydrating you. What they fail to mention however, is that you should wean yourself off of it and not just stop drinking fucking coffee on day one. I started to develop a significant caffeine withdrawal headache before half my dose was complete, which turned an otherwise benign experience so far into an uncomfortable one.

    Fortunately, the only overarching discomfort I had was the headache and the constant need to pee from three liters of collective fluid being put into my veins over the last five hours (the treatment is bookended by another liter of potassium chloride).

    Going home was relatively uneventful, as was the next couple hours. The proton therapy center had scheduled us in concert with the Army hospital to ensure we could be seen in the evening with enough cushion to arrive after chemo.

    We arrived at the proton center and I was told the first day is typically one of the longer ones, as they have to take an x-ray to make sure my mask is still aligned correctly, and to get the permission to go-ahead with treatment that x-ray image would need to be approved by a doctor. Fortunately I was feeling ok still and withstood the additional delays well enough.

    On the drive home I crashed right out in the passenger seat. Without fail, each day I pass out for a period of time on the drive back. Getting radiation is like spending a whole day out in the sun- it just sucks the energy right out of your body.

    The next three days were generally uninterrupted by the underarching feelings of nausea and discomfort. Usually the morning, right when waking up, is the best I feel all day. The longer I lie awake in bed, the worse I begin to feel. My body only tolerates lying down for sleeping, otherwise I need to be seated or in a reclined position in order to not feel like total shit most of the time.

    The saddest news I got this week came on, today, Friday, when my ex texted me to tell me our daughter was having flu-like symptoms. Seeing my kids was the one event I was looking forward to this entire week, and I knew that was about to be taken away from me for my own well-being. Talk about a gut punch.

    In fact, I think I’ll wrap it up there for now, one shouldn’t be emotional and blog.

    ============

    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.

  • Prologue Part 4: The Gang Gets Booed in Canada

    Referral-ception.

    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:

    1. A special substance (called a tracer) is injected into your body. This tracer contains a small amount of radioactive material that can be tracked.
    2. 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.
    3. 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.

  • Prologue Part 3: So what are you doing tomorrow morning?

    The ENT.

    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.