CPT Cancer

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

Tag: chemo

  • Treatment Part 4

    Cut Down

    When this whole thing kicked off I had these daydreams about how I was going to approach treatment and recovery methodically, with military discipline and the attitude of a winner. I wasn’t going to allow myself to get down or despair, but it didn’t fully register with me until this week that that mindset only works in specific circumstances and specific treatments. My type of cancer isn’t something you “fight” or “beat”: it’s something you survive. I am not fighting for my life. I’m not taking aggressive measures to defeat cancer like it were some sort of adversary: I am merely trying to endure and survive the experience. The fight comes after… if I manage to hold on long enough to be “in recovery” in the first place.

    Immediately following my second round of chemo I felt ok. I mean, as ok as I could feel. No headache or caffeine withdrawal from last time meant that this time would be slightly easier, right? WRONG. Kyle, you stupid bitch, fucking wrong.

    I was devastated. No energy, no stamina, extreme nausea, no appetite, no will to live. For the first three days after chemo I was maxing out at two cartons of formula per day, which is roughly 750 calories. I’d dropped 8 pounds in a week come time for my weekly visit with Dr. Panner. If this was a fight, I was purely on the defensive, I was merely surviving the onslaught.

    The only bright spot in the entire week was the pair of sores that had developed by my molars had healed somehow, either from the pre-infusion steroids or from mouthwash maintenance, so I could speak somewhat normally. That was it. That was the bright spot.

    My nausea finally manifested itself into vomiting during treatment week four. First with some puking into a puke bag in the car on the way to proton therapy, then once in the evening in between periods of a hockey game I had some emotional investment in, and then every evening when I brushed my teeth. Aside from brushing with a pasteless brush and swearing off of all mouth rinses, I’m at a total loss on how to fix this. I cannot not keep my mouth in good order: it’s medically necessary to preserve my teeth and my general health since the radiation is nuking my ability to keep a balanced environment. The one positive takeaway from not being able to swallow much, besides small sips of water, is that I’m not introducing a lot of foreign bacteria into my mouth.

    This weekend I’d traded away my visitation with the kids to the ex in exchange for the previous weekend. I knew after chemo number one that having the kids the weekend after chemo was a non-starter, but didn’t know how right I would be. Now, this isn’t something I’m happy about having to do and I miss having them but it was a necessary sacrifice. I did manage to facetime with them which helped a little, despite my degraded physical and mental state, so I’ll take the small wins in lieu of having any big ones on that front for the foreseeable future.

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    The Circle

    When big ugly traumatic things happen to you, you find out who your people are. You find out who the people that actually show up for you are, the people that mean what they say and are sincere. During my divorce this became evident and after my cancer diagnosis it was almost overwhelming. I received a major outpouring of support in material goods, supplies, and money to help kick this journey off and it hasn’t fallen off.

    I made a big deal about being able to mow my grass a couple entries ago. This benign chore was something I was proud to still be able to do because it meant I was functioning like a normal person. I knew under my new tube–fed reality that that portion of normalcy was being hung up for the time being. Fortunately I was able to call on Thomas to help me out.

    Me and Thomas go way back to when we were both over-caffeinated E-4s in Hawaii and Iraq, addicted to blowing money on women, things that went fast, and booze… as a normal 20 year old soldier does pretty much everywhere in the U.S. Army since 1775. After we moved on we keep in touch through social media and eventually reconnected when I was reassigned to Washington, where he had gotten out of the Army and begun a career. Thomas has been one of the cornerstones of my post-divorce life. He was there for me during all the tough times and is still there for me now. There’s nothing I’ll be able to do to ever fully repay him for being one of the pillars in my support network during two massive crisis’ in my life.

    Continental soldier and his stripper girlfriend in a Ford Mustang (circa 1777) – Craiyon AI

    Another part of my circle came in to provide me some support this past weekend but from way out of town and way in my past, Ang. Me and Ang go back to freshman year of high school in rural west Michigan, where she was a sophomore cheerleader when I was on the freshman football team. We ran in some of the same friend circles because of these overlapping sports and usually had at least one class together- we even went to prom together one year before she graduated and I ran off to enlist in the Army. We’ve always stayed in touch and she always managed to send me a Christmas card of her and her daughter (who is now in college… Jesus… where did the time go?) 

    For a little while those two had been talking about coming out to see Seattle and visit with me and right before I announced to people I had cancer she told me she’d booked a weekend trip up this way. Of course I had to tell her what was going to be going on right in the middle of the trip and how that part of it was moot, but decided we’d play it by ear. As the day got closer I knew traveling to meet anywhere was going to be a non-starter between my health and wanting to stay vigilant at avoiding public places.

    Fortunately we were able to connect before her flight out Sunday. Given she’d been traveling and in very public places all weekend we went “full COVID protocol” and my mother masked her and sat her down in the opposite end of my living room from me. Despite my increased difficulties speaking we were able to have a fun reunion for a couple hours, and when I was too busy fighting off some sort of nausea spell my mom would pick up the conversational slack. I know it wasn’t my fault, but I did feel bad regardless for being in such a worthless state when she’s one of the few non-family people who have ever come to see me when I’ve been living elsewhere in the Army. Like I said, things like this help you find out who your people are.

    Rena re-enters our story right about this time as well. Yesterday she came over to drop off flowers for my mom (who also got a bunch from Ang) and a get-well card from my hockey team. Of anyone in my circle, she is one of the few that have any idea what I’m enduring right now. She checks on me, and understands that I just don’t want to talk about it most of the time now in a way many people do not. Anyone going through this needs a Rena-esque figure to remind them that everything they are feeling is rational and that your aren’t going fucking crazy.

    This is entering a phase that mirrors the low point in a deployment, psychologically. Every day is Groundhog’s Day where the pattern remains the same but there is no measurable progress. Everyone I know is moving right along with their lives while I mark time. I don’t leave the house other than to go to a medical appointment, I am rarely out of my bed, recliner, or passenger seat other than to move between them or perform some kind of hygiene-related activity. I have difficulty speaking so passing the time with conversations on the phone is a non-starter. I am truly just existing on this plain of reality until I, ostensibly, start recovery phase. After proton treatment this afternoon I have 13 more to go, and one chemo session, plus surviving the two weeks of residual effects of radiation and chemo, and then hopefully a scan or pathology report that says no cancer is detected. Then the long road to recovery begins, whatever that looks like.

    There isn’t a lot of upside in my life right now, and I know that this won’t, hopefully, won’t be forever, but it’s hard to see the end when you’re in the middle of anything.

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    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.

  • Treatment Part 2

    Everyday an Adventure

    Chemotherapy is in the top five weirdest enduring experiences I’ve ever lived through right up there with deployments, foreign travel and the entirety of 2016.

    Everyone is familiar with the usual tropes of chemo: hair loss and nausea, but there are less discussed and less experienced versions of this facet of chemotherapy that I’ve experienced as direct effects or secondary/tertiary effects.

    In my last post I put the blurb about Cisplatin, the chemo agent, from Wikipedia and it isn’t wrong. While hair loss hasn’t hit me… yet… the nausea I experienced last week was very strong and enduring. Fortunately, the medicines we have to combat nausea in the modern age are very good at what they do assuming you don’t miss one of your doses. With the help of my mother keeping me on a pill regimen, an electro-shock wristband from my uncle’s family, and intelligently managing my activity levels I remain relatively unaffected aside from the general feeling of nausea- no barfing from either end during the first full week following my infusion.

    What did happen, however, was the amplification of my service-connected tinnitus and some high-end hearing loss. This was widely broadcasted by my doctors as a very likely side effect, but unfortunately there is no way to mitigate it. It’s very likely by the time I’m done with my third (and hopefully final) course of chemo at the end of April that I will need hearing aids. The upshot of this is that I’m told they have bluetooth now, so I won’t have to burden myself with using (read: remember to bring) earbuds anymore at the gym ever again.

    In an effort to get in front of the unbearably short term effects of Cisplatin like nausea, and anticipating allergic reactions, you are given anti-nausea meds, steroids, and stool-softeners. The anti-nausea comes in a short course of one daily pill that takes you through the worst of it, but is supplemented by shorter-acting longer-term meds that are taken during intervals or as-needed. One side effect of these medicines that no one told me to expect was hiccups. Good lord the fucking hiccups. Hiccups are frustrating for a normal, healthy person, and absolutely maddening for someone undergoing cancer treatment. Dr. Farrell, my MedOnc, checked up on me the next day telephonically to see how I was doing and when I mentioned the hiccups I got an, “Oh, yeah, a lot of people experience that from the nausea meds.”

    I am a lot of people.

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    Week 2

    By Sunday I was starting to feel better. Not 100%, but much better than “nauseated semi-vegetable.” The skin on the right side of my neck was starting to regularly peel, but nothing worse than someone in the last throes of sunburn recovery might experience. Otherwise, all systems were nominal.

    Monday was when I began to experience something like a normal feeling. I woke up to a call that my proton radiation therapy was cancelled because the machine was undergoing maintenance. On the one hand, this was a relief because I didn’t have to endure a drive to and from north Seattle, but a bit of a letdown because it was one more day added onto the back end of my treatment.

    Tuesday, now Tuesday I began to feel like a real person again. I woke up to an unseasonably nice day and decided that in lieu of a daily walk around the block I’d attempt at mowing my grass. If you’ve lived in the northwest, you’ll observe that once the fall rains come, many people just give up on maintaining their lawns until summer because of how hard waterlogged grass is to maintain. The end result is come spring, most yards have grass that comes up to your calves. Now my little electric 40v mower is a stud, but tall damp grass takes considerable effort and battery charge to tame. I mowed about a 12’x12’ square before I broke a bead of sweat, and decided I didn’t want to push my body’s luck. I went inside and started pounding water and racked out in my easy chair. The fatigue and electrolyte loss that chemo induces is absolutely real.

    Half-mowed lawns are proof of life at my house now.

    It was around this time my skin started to go haywire. My skin began to get tremendously oily and I started to have small breakouts on my face, scalp, and back. They weren’t painful, just unsightly and another blow to my already crippled self-confidence. Apparently this is a delayed side effect of the steroids I was on the previous week to get in front of potential allergic reactions, but they haven’t subsided much so I am beginning to think this is another fun chemo experience.

    The ex asked me if I wanted to take on the kids mid-week to make up for the previous lost weekend, as they were on spring break, and I jumped at the opportunity (that and it saves us on childcare costs as she wasn’t taking off work). My mother had her reservations, but ultimately supported me in this endeavor. I arranged a ride from one of my work mentors to radiation on Wednesday and she took my car to go pick them up.

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    Quality Time

    Having the kids around again took a tremendous amount of stress off of my shoulders. I pride myself on being as active in their lives as I am allowed to be, and being a rock of normalcy for them to lean on during the uncertainty of the last couple years. That said, they are still kids and they are exhausted even when I’m a healthy man. With my mom on hand, I went from doing zone parenting to man parenting, however, and was able to spend quality time one-on-one with them as best I could.

    By Thursday, I felt recovered enough to drive myself to treatment, so I took my seven year old daughter with me and for her it was just another adventure with dad. The cancer center front desk gave her a Nintendo Switch to play with and she was happy as a clam playing that while I received my treatment. The next day she wanted to work on one of their puzzles and play Uno. I’d imagine for her these excursions were just more daddy-daughter time where she got to do fun activities in new places, and if that’s what she pulls out of this experience then I can live with that.

    The downside of this time was I finally lost all remaining taste buds and my dry mouth has started to ramp up. It hit me sharply on Wednesday, following the loss of my taste buds, and has not remained consistent, which I’ve taken as a good thing. Through nutrition, hydration, and medical maintenance, I am doing remarkably well in tolerating the radiation so far.

    I returned to full on COVID-rules mode on Saturday, my first excursion into a place that is high-threat to immune systems even in good times: the hockey rink. My daughter has her games on most Saturdays and the undersized, under-sanitized, and overcrowded locker rooms full of kids are not friendly for someone with a degraded immune response. For her though, I was going to roll the dice. Hockey is the only part of her old life that’s remained consistent and I will protect it at a high cost. I masked up, put the hand sanitizer in my pocket, and got there early enough to get into the far corner of the locker room before it filled up with people.

    After we returned the weather was fantastic so I set out to do more of the lawn. The 12×12 was already starting to look shaggy so I went back over it, and managed to mow the rest on as much as a full charge would allow me. Normally a full charge will last me the entire front and back yard, but with so tall and still slightly damp grass it netted me about 80% of the backyard before I transitioned to the weed wacker to finish the back. The front will have to wait until I can work up the energy on another cooperative weather day.

    I made somewhat of an error in judgement on Sunday, however. In an effort to give my mom a break from driving, I convinced her I was well enough to execute the return trip with the kids on my own. The first hour went fine, but after my eyes started to bother me and my nose began to drain in what I can only assume is spring allergies, unless this is another delayed chemo response. Despite sucking down a ton of water, which is basically an everyday occurrence for me as part of the chemo management, I was miserable and tired.

    Miserable and tired should have been the title for last week’s entry.

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    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 10: False Start

    Chaos Comes to Those Who Wait.

    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.