CPT Cancer

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

Tag: radiation

  • Remission 2 – Part 2: The Choice

    (Warning: This is another long entry. There’s a lot to unpack here, so bare with me. Some of it is related to cancer, but skippable if that’s solely what you’re here for.)

    I’m lost, but I know where I’m going.

    This is a continuation of the last entry because things happen in here that pre- and post- date the hunt, but did not fit with that narrative, at least not cohesively, and I thought it important to tell that story as a whole instead of jumbling the absolute mess this entry is going to be. This one is going to be heavy, and you have time to bail now if that’s not the space you’re in right now to be reading it. Sorry, but you’ve been warned.

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    Fuck it, We Ball

    The day after I dropped the kids back off with their mom I went to a drop-in skate (a scrimmage, for those that aren’t wholly familiar with hockey) to see what I was made of on the ice against live competition. 

    I did this once in July and it was a train wreck. I was extremely winded, and didn’t even make it a whole hour before skating to the locker room, going home, and sleeping for ten hours. My goal was to make it at least an hour of the 1:15 session. When I showed up I ran into a bunch of old teammates and friendly faces that were happy to see me out there and giving it a shot. There were some less than stellar moments, but overall I managed to keep my feet under me against far more skilled players.

    I knew at some point I’d be able to play again, but I didn’t expect it to be this soon; I made it to the hour mark thanks to some deep benches and short shifts. I burned through my water at remarkable speed but I expected that. Shifts at drop ins tend to be longer because there are no set lines, just a rotation from the bench, so I could take short (45 second) shifts and rest without guilt knowing some gomer was going to take a four minute shift without a second thought.

    Fast forward two weeks.

    Originally I’d killed and buried the idea of playing in the league at all this season: the cost outweighed the benefits; I could never make enough games to make it worth it. Then the fuckers did it. They released the October league schedule and of course, right on cue, it was actually a makable schedule for me with weeknight and late Sunday games. It took very little encouragement for my old team to start cheerleading me into playing another season, so the night before the first game I could make I signed up.

    The primary rink my league plays games in is less than ten minutes from my house, so it’s not a major logistical movement to get there. I can leave 30 minutes before a game and still have time to get dressed and ready if I don’t waste any time. The locker rooms on one half of the building are comically small though and we were using that sheet of ice (there are two under one roof) so I decided to give myself some cushion and work my way into the room. Some of my old teammates, now on a different team, were playing and they waved at me as I walked down the corridor beside the glass to the rooms. It felt good to be back among friendly faces doing something I love to do.

    My team was composed mostly of new faces this season. Some of the “OGs” were there and were very happy to see me on this side of the dirt, and some of the new people had only heard of me as “the cancer guy.” Either way, I was ecstatic to be there, and a little apprehensive about what the night would bring.

    I’m a defenseman. If you’re not familiar with hockey, it’s basically what it sounds like. When my team is on the offense, I am supposed to prevent the opposition from breaking the puck out by camping on the blue line or being deeper than the deepest cherry-picking dickhead that is hanging out in the neutral zone looking for a cheap breakaway goal. This can involve a “footrace” of sorts where we find out who is faster and confident enough to stop once at terminal velocity, so as you might imagine I was a little worried about having too many footraces in the game from a stamina standpoint.

    Fortunately the team we were playing was roughly our skill level, and the match was tilted evenly enough where I didn’t find myself in a sprint often enough to put a significant dent into my overall fatigue level in-game, and only once did I rotate myself to the end of the bench for extra rest (in league games we have pre-determined lines, I was in the first line of defensive pairing, a “starter” if you will).

    I made a couple bonehead plays, and a couple of really good ones, but on the whole I was having a blast- even when I was doing really stupid shit on the ice like accidentally screening my goalie or leaving someone from the other team alone on the ‘back door’ (the back door is the side of the net that the goalie is not actively defending).

    We ended up winning 5-3 after holding onto our lead, and we bumped fists with everyone on the ice before retiring to the locker room. I was given “defensive player of the game” despite the fact that I think I was -2 or -3 but hey I’ll take a sympathy ballot over nothing, and now I have this Mjolnir hammer that’s colored like a Rainier Beer can in my hockey bag until next week.

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

    Let’s go back to Part 1 where I mentioned… her… because she plays a pretty big part in this entry. We’ll call her Sarah for the purposes of this blog out of the interest of her privacy (and mine). Me and Sarah have known each other for a while, and were always strictly platonic friends. We’d started speaking more toward the end of the summer about the trials and tribulations of life, relationships, my recovery, and anything else you can think of.

    I was in the process of trying to set her up with Thomas when, while trying to sell the idea to him over the course of the hunt, I’d realized that I had actually had strong feelings for her right in front of my face that I’d previously not acknowledged. I’d never thought of her that way before, but it was like the Titanic hitting an iceberg– slowly each compartment of my mind began to spill over with her likeness until I was drowning in turmoil over it.

    Those of you who have fallen hard for someone who was previously a close friend, but you’d never seen as anything but, know that it hits you like a sledgehammer: the stress of the weight of the decision to act… or not. It’s like a stone on your chest that gets heavier with every passing moment.

    For two weeks I’d wrestled with the consequences of telling her. I tried to talk myself out of it, I tried to convince myself that she’d never go for it. After all, I am largely still a broken person– medically speaking– and nobody my age wants to jump into the middle of this renovation project, right? Fatigue, brain fog, drymouth, dietary restrictions, random lightheadedness– I’m a mess! Oh, and if that wasn’t enough, the baby-mama drama is enough around these parts to push anyone away. Right…?

    Well. Maybe not… at least, not as far as God is concerned. Or my psychologist at behavioral health, or my cognitive therapist…

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

    Woo Woo Shit: Revisited

    So, for the first time publicly, I’m going to make a huge confession that is probably going to shock the people that have known me well for years: I am making an effort to get right with God. My recent posts have hinted at this a little bit, but I’d made a promise to myself before treatment that if I made it out from the other side of this thing that I was to “get correct with the lord” as it were.

    Over the Labor Day holiday I finally decided to call the only person I’d trusted at the time to help me dip my toes into this world: my uncle.  It was known to me he was getting more involved with the Catholic church recently and it seemed logical to bounce all this off of him and ask his thoughts on how I was to get started down this path.  Religion was largely foreign to me– my parents never raised me in it despite being raised in Catholicism themselves; I had no foundation to build on.

    After talking to him for about an hour, I was completely relieved: he did not try to recruit me, and even told me to make sure I approached this with care. He recommended a Bible podcast and answered all the questions he felt qualified to answer, and I was on my way.

    Shortly thereafter I made contact with the Army chaplain that blessed my throat as mentioned early in this story, and we sat down for lunch one day to discuss how I should move forward. Like my uncle, he agreed that it wasn’t prudent to just whole-ass jump right into it. It would take lots of study and even then, there were still some big milestones I might not ever choose to pursue (within the Catholic faith).

    Me and the chaplain discussed how to reconcile logic, reason, the scientific method, and faith– there was no way I’d be able to approach it any other way. I am a firm believer in science, always have been, always will be, but the gap between what science tries to explain and what is unknown is still too wide for me to just buy into the big bang. Why and how??? “Trust me bro” is basically what science says, which has at least equal footing with the idea that there is a divine spirit engineering this gong show.  

    Deciding to believe in God is how I’ve chosen to rationalize so much of this unknown. Without going too much into it in this entry, he has very much made himself known to me in very plain, very obvious ways lately. I struggle more and more with believing in coincidence, and the further I drift from that, the closer I drift toward the belief that maybe, just maybe, he has big plans for me. Or, at the very least, some sort of plan– to be determined, I’m sure my guardian angel will hold an IPR with the Saints sometime soon to iron out the next quarter of FY26.

    More to follow on this development in a future entry, but that’s where my head is at right now (my atheist/agnostic friends would probably argue my head is firmly up my ass right now, which, ok, fine, but new year new me– you’ll get over it; I’m still gonna send you unhinged shit on Instagram).

    Ironically, I have played hockey with a guy that looks just like this in goal.

    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.

  • Recovery 6

    There is an old saying: “That which doesn’t kill you makes you stronger.” I don’t believe that. I think the things that try to kill you make you angry and sad.

    -Jax Teller, Sons of Anarchy

    I’ve been thinking about this quote a lot lately. When it was on, I was absolutely a Sons of Anarchy fanboy because it would drop gems like this into intro or exit monologues from the main character of the show as he wrote a journal for his kids to read one day. Like most long running shows it went off the rails eventually and the ending left a lot to be desired. It was good when it was good, though. Not unlike a marriage, I suppose.

    Now that I am walking around and have some semblance of independence and have staved off any further weight loss, people love to comment “wow you look so much better” and while I’m sure there is a truth to that, I’m getting really tired of hearing it. I am not better in a lot of ways, and there are other stressors in my life that have compounded with treatment and recovery to make me broken and sad. When people ask me, “how are you feeling?” all I can manage to conjure up in response is, “still on this side of the dirt.”

    I don’t want to be short with anyone, especially if they are showing genuine concern, but I have so much fatigue from talking about my health with people that I am at a loss of what else to say. My PET scan is in two weeks, maybe I still have cancer, maybe I don’t, I’m trying to act as if I’m fully in recovery but the fact is I may not be done with all this, not yet. I don’t want to acknowledge that though, at least not in casual conversation.

    When you are a hostage in your own body like this, there are a lot of parallels to being in a broken marriage. Unfortunately this is also something I’m well versed in, so I can confidently make that comparison. There is an element of despair that cannot be cured by anything other than removing the cause, as radical and disruptive as that process might be to your life. It takes courage to take that step. I’m really, really tired of having courage. No one is coming to save me, though, and that’s the cold hard truth of being a man. This isn’t meant to take away from the friends and family who have made heroic contributions to support me and ensure I’m as comfortable as I can be- I’m eternally grateful for the massive outpouring of support I received. However, it starts and ends with me; ultimately I am doing this alone, like most of the other things in my life. No one else can do this for me, take my place, or fight these battles on my behalf. There’s no miracle shot, pill, or professional that takes away from having to do the work.

    This thing is trying to kill me, and it made me broken and sad. And the only way out… is through.

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

    Last week I had two significant medical events I’ll discuss on the front end of this entry: behavioral health and audiology. Starting with the most significant thing to happen to me since I got the PEG tube out: I was finally issued my hearing aids. I say finally because they like to wait a while until after treatment is done so that chemo can do all its damage before they attempt to assess and address it. Because my hearing loss is asymmetric there (I lost virtually all of my high frequency hearing in my right ear and only a little bit in my left), there as a concern from the ENT that perhaps there was something nefarious growing in my ear, so after an MRI confirmed that it was just an odd chemo-ism, I proceeded with getting the hearing aids.

    They aren’t nearly as invasive as I’d imagined, but there are little ticks I’m learning to manage. I thought, for instance, it would make being in the car much more bearable because I could turn my music down or listen to something while the kids watched the tablet on our long drives (they are bluetooth capable), but that is definitely not the case. I like driving with the windows down, even on the highway, and I found out that is absolutely not something you want to do with hearing aids in: the wind is deafening. I really only see these things helping me in day to day life when I’m around people in normal indoor settings. Everything I like to do involves profuse sweat, physicality, or noise, and you have to remove them for basically all of those things. They want you wearing them for a minimum of six hours a day so your brain gets used to them but that is harder to do than you’d think when you are me. 

    I will say though that I’m glad I have them, as children and women were almost impossible to understand if they sat to my right, and I know they will come in handy once I’m back in the office and trying to figure out what the fuck people are saying.

    That segues into work, or lack thereof, and what I’m comfortable sharing about the appointment with my therapist.

    The therapist I see works at an annex of the Army hospital which is dominated by mental health services. These run the gamut from group therapy, to standard mental health clinics, to speciality clinics. I go to a specialty clinic that only sees patients like me: cancer, terminal illness, etc. – not for Privates that are homesick, or women experiencing post-pardum, but people with life threatening or chronic medical conditions.

    At one point he was in the Army as a medical officer, but that was long ago, so his reaction to what I’m about to tell you was strange to me until I remembered he was a medical officer and that’s basically a different Army than the one I serve in.

    I told him I was experiencing a tremendous amount of guilt for not being at work and contributing. He looked at me like I just told him the Earth was flat. Now, I know I’d be next to useless at work, but that’s not the point. Between the appointments, naps, chemo brain, and being gone for over five months there is no way I’d benefit the Army at all, and I’d only be putting myself at risk. This is all very common sense, but when you buy into the culture that surrounds Army leadership of selfless service and sacrifice, that guilt comes on strong when you deliberately take time to take care of yourself.

    He assured me I was doing nothing wrong by, you know, recovering from cancer and that he, and the rest of my medical team, would have significant concerns about a setback if I went in against their advice. I know all of this, but the guilt persists. This is only half the story of what is going on in my head, though, the other half is apathy that’s compounded by an increasingly hostile coparent. I know that’s jumping from one very complex topic to another, but in how I’ve been processing everything that has and is happening to me, they are linked.

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    My daughter recently had her 8th birthday; the first I haven’t been present for since she was born (which I missed being stuck in Jordan/Syria). Those that know me best understand she is the absolute light of my life, really the reason I bother getting out of bed in the morning; without her I’m not even sure if there is a “me” in this future. So this was a tough one, especially with how this year has shaken out for me.

    Her mother, who for no discernable reason other than being hostile and difficult for the sake of it, has become increasingly difficult to deal with in the last few months. Not answering the phone when I call to FaceTime with the kids, not giving a reason or suggesting a better time, cutting calls short to take calls from her boyfriend, and only letting my speak to them when it’s close to their bedtime- the worst part of the day to try and video chat with two children in a house as chaotic as hers can be. So I knew in my bones that she would make a call on my daughter’s birthday as difficult as she could, and then paint me as the bad guy when I inevitably called her out on this pattern of behavior.

    I pre-emptively text her the day-of to ask when the best time to call would be, to which I, somewhat surprisingly, got a text back, “after I get home from work.” I know this time to be around 1800-1830, so once 1930 rolled around I was starting to feel myself getting sleepy and decided to call instead of waiting. She picked up and gave it to my daughter, who I had just enough time to sing happy birthday to before her boyfriend’s call cut in and she said, “I’ll call you back in thirty minutes.”

    I. Was. Furious.

    In my best “this is for the screenshot if I have to submit this conversation into evidence” language, I let her have it about this pattern of behavior. Without rehashing the conversion, which was not her exonerating herself but basically telling me to fuck off in so many words, suffice to say she summarized her position as her boyfriend of six months takes equal or greater priority to the father of her two youngest children. Now, in fairness, my daughter says very nice things about him but the simple fact is that he’s not only not her dad, but his past record is not a glowing endorsement of future success. He will never take priority over me in any way shape or form either legally or emotionally and that’s a hill any reasonable father would be glad to defend and die on.

    They tried calling back 90 and 120 minutes later than initially promised, but by that time I’d racked out because that’s what time my body said “lights out” that particular day.

    One thing she couldn’t do without causing an absolute shitstorm, however, was keep them from me physically. The following Saturday was our agreed to exchange for the summer vacation visitation.

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

    Between hoping that my ex was wrongfully deported by ICE that week, and our exchange day, I had another CT up in Seattle at the university hospital. This actually killed two birds with one stone, one, it was ordered for the post-PET consultation with my radiation oncology team at the cancer center so it would compliment that nicely, but second they ran the contrast agent through my chest port and that kicked that appointment back another month. (You have to get your port flushed every twelve weeks to keep it in good working order, so any time it gets accessed for a medical reason, that counts, and port maintenance gets kicked back a corresponding twelve weeks.)

    The civilian hospitals that handle the radiation half of my care all use the “MyChart” system. It’s a fantastic app, as far as healthcare is concerned, as it really is a “one stop shop” for records, billing, appointment, information, and chatting with providers. The military has a similar system, but of course it’s a pain in the ass to use because it’s behind a CAC (government ID card with a chip in it you stick in a computer for securely accessing some unclassified networks) wall and there’s no app I know of to access it. So as soon as my CT had been read by the radiologist, the results were posted in my app. This is both scary and helpful. Scary because with as much medical terminology as I’ve learned in the last six months, I still don’t understand a lot of the terms they use in their notes, and helpful because it is expectation management. 

    The short version is, “all systems nominal, continue with PET, pay special attention to some shit in his lungs that may or may not be more cancer.” This is the ol’ Dr GPT version, but a provider has yet to contact me so I’m assuming there’s not an emergent issue that was identified and that I’m not in any mortal danger at this time. That’s… progress? I think? I’m Ron Burgundy?

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    Ever since I started the “Recovery” section of this blog, I’ve used the span of several days to write these entries. I have the strong urge to go back and delete, edit, or refine prior writing but have generally opted to leave them as I am in the case of this one. These are snapshots in time, and as much as I want to present this refined version of myself, my thoughts, and emotions, I think it’s more beneficial to those going through their own cancer journey or their loved ones to see these things as they happen in time and space, so it stays even if it makes me look like a shithead at that particular moment.

    Me and the ex met this past weekend at a county aquatic facility in Oregon where she’d planned our daughter’s “birthday party” which was significant because we were supposed to meet earlier by a few days because of how I authored our parenting plan (which she agreed to, but frequently misquotes and gets mad at the contents of , when pointed out to her) but she’d given me a few extra days on the front end of the summer and I wasn’t going to be a stickler over a few days especially if a party was going to be involved. Well, I arrived, fully expecting a hostile crowd of acolytes and family members and the only people that showed up were the ex’s sisters, mother, and her sister’s baby daddy’s family. Quite a turnout for my little girl’s big day that so much fuss was made over the exchange date. It ended up being fine. No tension, no drama, and my kids were over the moon over seeing me and spending time with me there. The car ride back was one of the happiest I’ve had in recent memory, although extremely physically tough. It took some atrocious gas station coffee to get us back in one piece because my body wanted to sleep for a year by the time we’d returned home.

    It’s just us this week (the next few weeks some family members are flying out to spell me for some of the more important things that I can’t take the kids to), and while single parenting while juggling recovery tasks is not without its own challenges, they are the reason I’m still alive on this Earth. After all, what was the point of everything I’ve been going through if I quit now just because a three year old need to be told to shit in the toilet instead of his pants?

    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.

  • Recovery 5

    I’ve been thinking about this entry ever since the previous one. The thing about this blog is it’s semi-anonymous, meaning, those who know me know it exists. There are sure to be some strangers who stumble onto this as they barrel through the internet, but they are probably the minority. When it comes to speaking about cancer-related subjects, my self-censorship is low but never zero, but personal subjects get a more sanitized treatment.

    Why? Three reasons:

    • When you’re a single dad, you have to have a healthy amount of paranoia about what parts of your life are public. What about my digital life can be weaponized against my visitation rights, me, or my wallet in a dispute with the ex? In many places, women are still the default residential parent and aren’t conditioned to have to look over their shoulders like many men are. But hey, that must be some more of that “privilege” I’ve heard so much about.
    • As I opened this blog with several months ago, I’m an active duty Army officer (and Public Affairs Officer to boot). There are no shortage of people out there that wish to do my career, or me, harm because of what I do for a living or because of opinions I express that don’t align with theirs. A couple years ago I made the choice to no longer participate in many online discussion forums for this reason, and have muted my online presence to a decently high degree to prevent such a witch-hunt.
    • You want to get something off your chest, but don’t want to discuss it further with anyone, so you avoid saying certain things to avoid that hassle of reliving these thoughts over text/phone/in-person.

    Why do I bring this up?

    It stunts me from treating this as a true unfiltered journal, and while there are a wealth of subjects I have a lot of nuanced thoughts on, at the end of the day most of them would only serve to harm me in some form or fashion- so we’re going to try and stick to the script here and keep this about the things on the title page of this blog.

    Obviously this is the first time I’ve written anything in a while. Not for lack of interest- I have thoughts all the time that I think, “Oh, I should add that to the blog.” However, they get lost in the fog of fatigue and life as it happens around me, and they rarely make it in. A lot has happened, most of it positive in some way, but I am far from normal and my body isn’t shy of reminding me of that fact.

    After an extended Father’s Day weekend with the kids they were back to their mother’s for the first half of summer break. I’m fortunate that I have the second half of summer with them this year specifically, given everything that’s transpired, but it doesn’t make it easier not having them around for so long. Now my contact is relegated to whenever their mother feels like answering the phone and acting like an adult that’s capable of communicating respectfully when she can’t, which has been challenging already.

    I actually went to take them back to the exchange point after this last visit, despite only being able to drive part of the distance before my eyes started to act up from either the strain or some kind of mystery allergy. I’ve heard that chemo wipes out your allergies, but I am starting to think it’s just reddit bullshit from people who, like me, were shut in during allergy season and spared their normal seasonal allergies. Sneezing is just about the most painful thing in the world for someone like me, and I’ve had to try and hold in many to avoid the pain it causes in my throat.

    A couple days after dropping the kids off my mom departed. I had gained enough medical clearance, and physical independence to do basic things for myself like nutrition, driving to appointments, and walking without any assistance. With the kids not needing to be picked up anymore until later in the summer, it was finally time for her to leave and return to her life in Florida where she and her husband are semi-retired. I was getting antsy to be back on my own prior to this, but I’m glad she hung on as long as she did; at times I’ve needed more help than I’m willing to admit.

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

    With my newfound independence I knew I had to redevelop routines long lost to the annals of time. I came up with a feeding routine that needed to accommodate my still very irritable throat with my caloric needs, and I mostly have. It started with just calorie shakes, oily and fluffy scrambled eggs, and ramen noodles but I’ve expanded the aperture of my diet slightly since starting that dietary regimen. Now I’m able to introduce finely shredded meats (think canned meats like tuna/salmon/chicken) as well as canned fruits like pear halves and peaches.  All fruit products that have a lot of juice content, like canned fruits and apple sauce, still sting after a while because of the acidic nature of it, but it’s the only real way for me to get fiber and the vitamins that they offer in a way that doesn’t hammer my throat.  I tried clam chowder for a while, but the potatoes just became too much. I’ve found I can make and eat runny instant mashed potatoes with generous amounts of gravy, but solid potatoes are very much a bridge too far.

    I’ve gained five pounds for all this trouble and have seemed to hit a plateau. The nutritionist at the cancer center said one way over the hump would be to introduce exercise, but all I’m really cleared to do is go on walks for as long as I can tolerate. So I walk. I walk every morning, usually to the University of Puget Sound, a small college a little over a mile and a half from my house. I wake up, check my messages, and I walk. This route usually takes me about an hour. When I get home, I eat my eggs, do the dishes, and sit down to watch the morning news. Shortly after I try and do some sort of task or chore, if I don’t, it won’t get done until I’m done dozing off between breakfast and lunch.  Speaking of, lunch is typically a pack or two of ramen and a can of fruit, and sometimes a boost calorie shake. Then back to vegging out, as now it’s the heat of the day here in the Pacific Northwest and going outside is hazardous to the skin on my neck without taking a bunch of precautions I just don’t feel like taking unless it’s necessary. That and it will increase my water intake, which is already over four liters per day due to my dry mouth and activity.

    And let me tell you about fuckin water. There was a huge problem at the end of my treatment with not getting enough hydration, which is essential for the body to heal things like radiation burns inside your throat. I was doing my daily hydration appointments to get even a quarter of what I really needed, in fact, that was probably just keeping me alive at that point. It wasn’t until the feeding tube episode that I really began to turn my hydration around. Now that I’m drinking obscene amounts of water I am constantly on the other end of the equation, peeing multiple times an hour. Not little piddly streams either, these are grown man pees, and they happen all night long too. I wake up no fewer than three times per night to pee. I’m getting a taste of elderly life I think, and now I can understand why some of them are so goddamn angry all the time.

    I also can’t go anywhere without water. It’s a literal showstopper to the point where I keep a case in my trunk not just for life/death emergencies like any other supply, but for when I rush out of the house without the only water bottle I have that fits in the cupholder of my car. I’ve become dependent on access to water like some people get chemically addicted to controlled substances.  I can take morphine for days on end and have no withdrawals or cravings for it, but if I got more than 10 minutes without a sip of water it feels like I’m back in Iraq and the convoy just went black on water. (Note for civilians: “going black” means you’ve run out of some class of supply)

    The author dying of thirst in Iraq circa 2006.

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

    So aside from being constantly tired, unable to gain any meaningful weight, always having to pee, being lightheaded when I stand up, and not being able to hear shit, I’m doing ok. My doctors are content-to-pleased with my progress and are keeping an eye on me regularly. I get my hearing aids next month, and I’m told they have bluetooth, which is exciting. Now when the kids are watching a movie on the tablet in the backseat I’ll have something other than road noise to keep me company. I’m sort of burying the lede on this whole update though: I got the feeding tube out.

    After meeting with my oncologist in the middle of last week, I made a compelling case to finally get the tube out. It was absolutely priority number one for me going into that appointment, and I was keen on delivering that to myself. He put in the referral and later that day interventional radiation called me to schedule a removal for the next afternoon!  I had no idea what it would entail or how I would feel during and immediately after, but I figured however it felt would be worth the cost of not having it in my body anymore. Nothing destroys your confidence like having a PEG tube hanging out of your abdomen. The weird bulge in the shirt, the discharge, the maintenance, all of it had to go. All and all it was a very smooth deal. The IR nurse had it out before I even knew what was going on! They said it would partially heal in 24-72 hours with a full heal taking about two weeks. So now I have a gunshot looking wound in my abdomen, but now I can roll around freely in my sleep and have a little more self-confidence. It’s not like it’s advisable for me to get laid right now, but I like having the possibility on the table. Tell your lady friends I’m back on the market. The clearance rack, but, still… the market.

    However, the bad comes with the good, and I was told that the port had to stay until next year, after my one year PET scan. It wouldn’t limit me from doing anything that I want to get back to doing, but there is maintenance involved and wearing some backpacks can be uncomfortable if the straps are positioned wrong. It will be something I have to navigate or figure out workarounds for, but probably not a showstopper for when I start to resume the hobbies that bring me joy like hiking, hunting, and hockey.

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

    Nobody talks about the mental battle involved in all of this, at least, it’s not well-discussed. Granted, the physical impacts of every single step of this journey are known to a degree and shouldn’t be downplayed, but the mental part would be absolutely devastating if I hadn’t been through micro-doses of hell leading up to this whole scenario.

    I’ve always been a bit of an independent spirit, content in my aloneness. Ever since I was young I was fine, or even preferred, playing alone at times and as I matured into an awkward teenager with poor social skills I didn’t accumulate a penchant for being in groups of peers all the time. Today this is called a “social battery” but mostly I just needed space to think. My psychologist said I’m a ‘thinker’ and I think he’s onto something. Now, I can adapt and survive to and with almost any social setting, but ever since I moved into my own place in late 2023 I have fiercely guarded my peace and independence within the limits of my ability to do so. Here’s where the dichotomy comes in: having cancer is a fundamentally lonely experience.

    Yes, I was supported by my amazing mom throughout treatment and the early part of my recovery, and I had dozens of friends and family send care packages and check in on me in person and telephonically. My coworkers visited me during hospital appointments at the Army hospital, and a hodge podge of each member of a community I’m part of showed up at my bell ringing during my last radiation session. But, at the end of the day you go through this alone. Only other patients and survivors actually know what you’re going through. There’s no other way to experience this other than going through it. You can have empathy, understanding, and be supportive of someone going through this, but you can’t know the psychological toll it takes on them. (Note: I swear the next person that tries to relate to me with their story of losing their taste buds during COVID is going to get me arrested)

    Now amplify this with two children under ten, a co-parent that does not always act logically or rationally, being a commissioned Army officer in the current domestic and geopolitical climate, relationship woes, and any other stressor you can imagine… and remember that while all this is going on you are a hostage in your own body and have harsh limitations on what is safe or prudent to do. My cortisol levels have probably been off the charts since December.

    Why do I bring this up? If I act recklessly, I could return to my old self almost immediately, at least within the limits of my ability to do so. It would almost certainly result in a complication or setback, or possibly even a potentially fatal accident as I’d be effectively burning the candle at both ends. If I act on the guidance of my doctors and medical team, sure I’ll likely survive through the end of the first part of recovery, but the amount of joy I experience daily is cut down 95%.  Let me expand below.

    I played video games a lot as a kid and young man, but I started to grow out of it in my mid-20s and had fully grown out of it by the time I turned 30. Not counting deployments, I’d have spurts here and there where I’d go down the rabbit hole on a game, but by and large my dopamine rushes came from being present with my kids and spending time outdoors. I have played a lot of video games during this experience and in the last 3-4 weeks I can barely be bothered to look at the TV. When I made hockey a part of my life right as my marriage was beginning to end, it really took over my life in the best way.  It’s sunny and nice out now, this is the time of year when I should be scouting every weekend and playing summer league hockey and getting circles skated around me at drop-ins. Instead, aside from taking my morning walks, I sit inside making up chores to do in between naps and meals. I’m so burned out on video games, the news cycle, and the same uninteresting movies/shows on streaming apps. I can’t take any more screen-based stimulation.

    This whole mental state is undoubtedly exacerbated by the fact that I don’t have kids right now and haven’t since father’s day. I am not allowed to have pets, so a dog would’ve been a great solution, but this place I rent is too good for me to throw it away rashly for what I plan on being a temporary condition. Being a single father is not only all-consuming during visitation, but they are frequently on my mind on days and evenings I don’t have them. To add to this, their mother has been less cooperative with facilitating our video calls lately and it’s been wearing me out emotionally.

    I have a great tribe of people here I’ve developed over the last couple years since my marriage ended. My ex was never comfortable around “my people” and often made excuses to not go out, not wanting to have someone watch the kids, or would generally just insist I go alone. This made building a community challenging as the dynamic was such that staying home was better than going to spend time with peers, because what would be happening on the other side of my phone ended up not being worth the stress. 

    That tribe, however, has moved on like the rest of the world while I’ve been treading water. I’m a bit of a social burden: nobody knows what I can eat, what I can do, and what I’m capable of. I don’t blame that mindset whatsoever, because in large part yes- I cannot do big sexy hiking trips, or enjoy a barbeque banquet, or spend a huge amount of time in the sun (without getting extraordinarily tired and having to pee every 15 minutes). I probably feel like this because the first person that wasn’t my mom or Thomas came by to see me this afternoon: Rena.  She told me about her recent scan (if you’ll recall from earlier posts, she had cancer in her 20s and has to get semiannual PETs), the logistical headaches of managing the ladies hockey league, local politics, and some of the characters we both know. It was nice to just have an uninterrupted conversation with a fresh face. When she left I took a nap and then ate dinner, watched the news, and began to finish this entry that has taken me four different sit-downs to finish and weeks of thinking to put together.

    This isn’t the end of this journey, and I will have a lot more to say over the next two months. This is, however, the end of this entry because I could keep at this all night at the rate at which my mind is moving.

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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.

  • The Final Week of Treatment

    Author’s Note: “Recovery Week 1” will explain why this entry took so long. Life comes at you fast.

    The last entry was short and to the point because I was writing it at  Chemo 3 during the hydration portion, but before the cisplatin portion. Doing any kind of task with my hands while on cisplatin is basically a non-starter a majority of the time as I wear special mittens with ice packs pushed into them to combat the onset of neuropathy during the infusion for as long as I can tolerate. Once I can’t tolerate it anymore, I put them back in the cooler to re-cool and am free to use my hands again until I put the mittens back on. This process also occurs on my feet and on my head, with special booties and cap respectively, but I don’t really need to do anything with those while I’m chair-bound for the infusion.

    I started last week off with the attitude of, “I just need to survive the worst of the chemo and then I’m on the path to recovery.” But I didn’t fully expect just how much of a hammer the last round of chemo would hit me with. The onset of nausea, general “yucky” feeling and fatigue set in as expected but the nausea was so bad this time that feeding, medication, and hydration through my feeding tube was basically a non-starter. Mentally, I didn’t even want to attempt these things and it began to wear me down emotionally.

    Radiation at this point was a blur. I slept most of the way to and from, and I dozed off on the table when I was getting zapped. My final day was Friday evening and I’d extended a broad invite to my circles in case people wanted to support me when I “rang the bell” after treatment. I was very surprised at the eclectic group of people that showed up to cheer me on- there was someone there from nearly every slice of my life that in many ways has no overlap with the others. Staff members from the proton center technician team that treated me daily were also on hand to observe, which I found touching.

    I was tired, emotionally spent, and physically at my limit but still managed to scrape together enough energy to conjure up a weak speech about the importance of taking care of yourself and each other. Technically you are only supposed to ring the bell three times but I rang that thing like I was a conductor on a train platform– I was glad to finally put this milestone behind me.

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    They Showed Up

    I have to take some time to talk about the people that “showed up” to the bell-ringing at the proton center.  Mind you a majority of this crowd lives even further south than me so they drove over an hour after work on a friday evening to watch this simple act. I will continue to use some made up names, and some real ones, but what matters is acknowledging that these people took time out of their busy friday evening to be part of this day.

    Thomas, who I mentioned before, showed up with his son and daughter. This didn’t surprise me, but I have to continue to acknowledge how important he’s been in my life during this crisis as well as the ones that came before it over the last few years. There’s never not been a time where I can count on him to be someone I can count on for anything at any time. He’s my brother in every way but blood at this point, an amazing father, and someone to emulate if you’re looking to build a positive, stable life. There is nothing I wouldn’t do for him, and I know there’s nothing he wouldn’t do for me. We should all be so fortunate to have someone in our lives like this.

    I had several Army colleagues show up, which was touching. They haven’t seen me in almost three months but there’s never been a moment where I felt shut out or abandoned by my Army family both near and far.

    Someone from my beer league hockey team showed up, sporting our jersey, which was something I really didn’t expect. We aren’t super close, but her simple act of showing up and representing what was a huge slice of my pre-cancer life was truly touching and made me unexpectedly emotional.

    My mom, of course, was there, but my aunt also came down to see me despite her own health difficulties as she battles her own variety of melanoma. She’s been an important fountain of information for me as a multiple time cancer survivor.

    The proton therapy team all stood off behind the desk and watched and I’d be remiss if I didn’t mention how great they’ve been during this portion of my treatment. Never once did they come off as cold, uncaring, or just going through the motions. Every time I went back for treatment I felt that my comfort and care were their number one priority and that they were committed to giving me the best treatment possible. These are radiation technicians, nurse assistants, registered nurses, resident doctors, and my primary radiation oncologist Dr. Panner.

    As much as I want to end this entry on a good note, I unfortunately cannot as this is not a story that ends with everyone standing up clapping at the end and I am miraculously cured after my last treatment. The reality is, unfortunately, a lot gritter than that.

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    Slow Burn

    Radiation, while having its own set of awful side effects, isn’t something you feel as acutely afterward as you do chemo. Chemo isn’t something you feel immediately either, but you do feel much quicker than the accumulation of radiation. Within a day of each round of chemo I felt terrible, as to where I didn’t even begin to feel the first effects of radiation until nearly three weeks into treatment.

    The problem with layering the most difficult treatment you can give someone with an already difficult cancer (my medical oncologist said his greatest fear is a cancer of the head/neck or prostate due to the side effects of the treatment and he’s seen some shit) is that you aren’t quite sure where one side effect ends and another begins in terms of attribution or duration. Nausea, for instance, is one that many attribute to chemo but in my case also lends itself to radiation in my case due to my treatment area. Radiation has made my saliva thicker as it degrades my saliva glands, which gives my already sensitive gag reflex even more trouble to the point where any time of foreign object or fluid in my mouth triggers gagging or vomiting. Vomiting is something I try to aggressively avoid, because when your throat constantly feels sunburned the last thing you want is acidic bile running up past it and out of your mouth. Vomiting also aggressively engages your ab muscles, and as discussed in my entry about receiving my feeding tube, that hurts much more than it needs to because of the gunshot-sized hole in my ab wall.

    There came a point during the week where my only hydration was coming via my daily hydration infusion appointments at the Army hospital. This is exactly what it sounds like: I go in, sit for an hour and get an IV bag shot into me through my chest port, and go on about my day. I was lucky to have a couple visitors during this when my more aggressive anti-nausea meds were still effective post-chemo and before I really started to deteriorate over the weekend. My old platoon sergeant from when I was a young junior enlisted soldier retired to this area and came to see me during one infusion, and later some of the Army lawyers I work with stopped by briefly to say hi. Speaking is still an incredibly laborious process for me so I still sounded like the black kid from Malcolm in the Middle trying to hold a conversation, but I tried.

    Things really took a turn for the worst over the weekend. I was both unable and unwilling to take any feedings or medications out of fear of vomiting due to my intense nausea. I figured this was just a really rough round of chemo effects and I’d tough it out until next week.

    Things did not get better.

    They got much, much worse.

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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 6

    Pain Management

    My throat has been on fire for the last two weeks. Not just painful to swallow, but actively sore to the point of feeling raw inside. To this end I was able to secure a referral to the pain management clinic inside the Army hospital. I was initially seen last week, where I was prescribed Marinol (Army-legal THC oil capsules), a fentanyl patch, and a liquid version of gabapentin, which I’d previously used pre-cancer for nerve sensation management issues. Of course, liquid Tylenol was still on the docket but we were well past the light discomfort that it could address.

    The pain doctor, Dr. George, explained that my whole career I’d gotten “baby opioids” for musculoskeletal injuries and someone like me with a very strong tolerance for opioids would need significantly stronger prescriptions. I voiced my concerns of not wanting to become a crackhead and he assured me the odds of that happening were basically non-existent in my case because there was no family history and that we’d reverse order the dosage of these medications during recovery. Fair enough, but it’s still something I’m going to remain cognizant of during recovery. Very much anti-becoming a crackhead.

    “Y’all got anymore of them pain drugs?”

    After about a week of taking this combination I started to feel slightly better, and at my follow-up appointment it was determined I should up my doses to keep up with the rising pain level as well as introduce a faster acting short-term pain reliever hydromorphone. This worked wonderfully, until it didn’t. The drop off is steep and immediate and several times I’ve woken up writhing in pain because it quit in the middle of the night. I need to figure this out with Dr. George or I’m in for a miserable next couple weeks, crackhead status be damned. The duration of my meds’ relief is shorter and not as active. This should have been predicted because I’m coming up on three pretty terrible weeks for radiation related pain by all accounts, but me and everyone else sort of grew complacent I suppose.

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

    Over the last week I managed to finish my second to last week of radiation. Fortunately most of the appointments were in the evening so we were able to cut a lot of time off our return commute as the afternoon rush had already passed by. A small mercy, but a welcome one.

    My mother went to pick up my kids Friday while Thomas took me to get zapped at proton therapy, both rides went fairly uneventful. When the kids got home I got them straight to bed and put myself down too. Sleep is something my body demands of me almost hourly now, even if for just two to five minute dozes. Staying up for the kids didn’t happen, safe to say, but I did wake up in time to get everything lined up for when they arrived.

    Saturday me and my daughter got up and watered our garden, which is just about all the energy I could muster to do anything in the morning, and then we played board games until my mom loaded her into the car. They swung by the pharmacy to grab some of my new medications on the way to a “kids fest” that my base puts on every spring. By all accounts, she had a great time and they even went out to eat after. I’m glad she got out of the house for a quality experience and spent some quality time with her grandma absent her little brother.

    Me and said little brother stayed behind and built a Hot Wheels track an old friend of mine sent over for him. After we got it figured out I laid back and took in some nutrition through my tube while he tooled around with it. My waking hours have to be multi-purpose, after all. See, apart from his sister my son is a great kid, but as soon as you put them in the same place at the same time he turns into a full blown terrorist. Discipline that works is hard to come by, and the only real way to get him to “act right” is to separate them. It’s a little disappointing, and sometimes they do ok together, but I had no idea they’d fight as much as they do at this age! This summer I will have to get creative because I won’t put up with the chaos for very long once I am more recovered and have a freer hand in communication and discipline.

    Next week is my final week of treatment. Five radiation sessions and one round of chemo. The end one of the worst months of my entire life, and it’s still supposed to get worse until the cumulative effects wear off into mid-May. Ain’t life grand?

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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 5

    Stephen Hawking Vibes

    Well, it finally happened, I lost my powers of speech and swallowing. The pain in my throat feels exactly as advertised: a really bad sunburn inside your throat, coupled with thick saliva that seeks to choke you at every opportunity. Ain’t life grand?

    Cancer, especially the brand I have, is very hard on basic tasks required to exist on this plane of reality. Now couple that with the inability to communicate verbally and you have a wonderful cocktail of “everything about my life is unnecessarily complicated and frustrating.”

    Once I realized this would be my reality for the foreseeable future I went to work finding a free app that would enable me to Stephen Hawking my way through life. Fortunately I found one, and the only annoying part of it is it randomly injects full-volume ads after I say something. The inconvenience of being slightly handicapped is sponsored by Kayak!

    Aside from communicating like Dr. Hawking, I have also tried to get by on charades and oh boy let me tell you I’m awful at charades or my mom is, possibly both, but it’s a bad combination either way. There is a lot of friction between us that comes from my inability to freely express myself in an articulate, nuanced way and it makes both of our lives a little harder than they need to be.

    This is where things stand with me: getting worse a little bit more every single day. There are moments where it’s a little unbearable. Like the random sensation in my throat that will just decide to tickle my gag reflex endlessly for an hour at a time, dry heaving after spending an hour in the car on the way to proton therapy, generally fatigue and weakness from not being able to get enough nutrition, take your pick really.

    As I type this I’m receiving a “hydration treatment” at the Army hospital that’s going to become every other day or daily for the next few weeks because I’m not getting nearly enough water through my feeding tube due to aforementioned reasons. Aside from just needing water to live normally, my medications and treatments actively dry me out because they are hard on the ol’ kidneys and liver. Once I can swallow again this becomes a non-issue, but losing the ability to even swallow water has been a huge setback to how my body is handling everything I’m throwing at it,

    I mentioned that I’m not getting enough nutrition, which is also true. To just normally exist I need roughly 2,500 calories, and add in radiation and that probably goes up a little. This means I need roughly six cartons of my feeding formula to maintain my weight. I’m averaging three per day. The laws of thermodynamics can tell us that this is not ideal. I’ve dropped about 25 pounds since treatment began, but most of those I’ve dropped in the last two weeks when I lost the ability to swallow anything. That means I lost the 20 I gained in preparation for all that, plus five. I’m now a few pounds below my normal “walking around” weight. I’m not alarmed just yet because from about 2004-2008 I walked around at 165 at my current height, so anything below that and my own internal alarm bells will start to go off. Obviously when I begin recovery I want to return to my normal 185, but my motivation will be as much health as it will be to get this damn feeding tube out. Once I get the feeding tube out that’s when I know the real road to recovery and normalcy begins.

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    All the things left unsaid

    Being unable to speak for someone like me that isn’t shy to hold down a conversation not only frustrates me when it comes to my basic survival situation, but now my only method of catharsis is talking to people with the little black sadness device we are all addicted to in our pockets. I know this is not healthy long term, but I am aware of it enough to know that when I can regain normal speaking function that I will take a long detox from my phone.

    Throughout this ordeal, while shut into my house, I’ve had a lot of time to think. Introspection is good, and probably not a common enough phenomena in the world. Looking back, dissecting old problems or situations, and trying to learn what could have been changed or improved upon or how to grow from those experiences are all important parts of being a healthy responsible person. That said, when you are physically helpless to do anything other than be a hostage in your own body for an indeterminate amount of time, unable to maneuver in your own life because your time is not really your own, a little too much introspection can be dangerous. It can lead to anger, which compounds the frustration.

    Most of my anger and resentment stems from my marriage and divorce, and how I’m able to look back and feel like such an idiot for not fighting harder. At the moment I felt pretty good given the situation I was presented with, but looking back I was salvaging a situation that could have gone so much differently, a situation I let boil to the point that it got to because of misconceived notions of honor and fairness. I once again let myself be manipulated and nearly paid a much higher price than I ended up paying for that error. 

    Hindsight is 20/20, obviously, and a time machine would be great right about now, but it takes a lot of energy I don’t have to not lash out at my ex and return the same energy she’s been giving me over the last 18 plus months since I asked her for a divorce and we began our separation. And then I spend a lot of energy being mad at myself for being such a fool, for not learning from others, for being stubborn and set in my ideas that it could be different if I just took the high road. 

    Taking the high road is the worst thing you can do in a divorce is the lesson I learned, it makes you vulnerable to exploitation by the other party. There is unlikely to be a next time, but if there is, I’ll be ready long before that point. The other benefit of limitless time and access to the internet is the boundless legal and financial education you can give yourself free of charge out of sheer boredom and/or determination. I’ll be ready.

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    The end is in sight

    I’ve spent a long time pondering my future, not just raging about the past, as I start to set my sights on my last treatment. My last dose of chemo is next Tuesday and my last proton session is next Friday. I’m on the cusp of putting this part of the journey behind me, so I can’t help but think of the “what’s next” and pester my medical team relentlessly about that subject.

    Here’s what I know: 

    • About 2-4 weeks after my last treatment I should start to heal and regain my speech and swallow functions, which should also mean I can come off my pain meds (I’m taking enough legal drugs to melt a urinalysis cup right now thanks to my heroic bodily tolerance of opioids). Once I can truly swallow liquids again pain-free then that can kick off rehydration and nutrition in a meaningful way that doesn’t involve going in for hydration treatments or relying solely on the tube for feedings.
    • I will, ostensibly, regain my ability to taste slowly over the next year, starting with sweets, sours and then eventually salts and spicys. I wish that order was reversed, but it is what it is. I can power through no taste, however, that wasn’t a problem for me earlier in the treatment. Once I’m eating solids again it really is game over for being underweight, being able to taste just helps that process along. Some of the feedback I’ve seen is that the salt and spicy may never fully return, which is sad, but I’m hoping that’s not true in my case. There is nothing I can do to impact this one way or the other.
    • Once I haven’t used the tube to feed for 6 weeks AND maintain a healthy weight, the tube and port can come out. I cannot tell you how much this would mean to me. It is a huge confidence drag and physical limitation.
    • My stamina and fatigue should return to about 80% off normal levels within a year, with incremental improvements. I’m told I’ll never be truly 100% but this is something I can impact through rehabilitation, diet, and exercise. I hope all the little clinics responsible for rehabing me are ready, I’m packing a lunch and plan on wearing their asses out. I simply do not accept being a lesser version of myself after this is done.
    • Now for arguably the most important detail: surveillance. I get my first PET scan at around three months, where they fully expect to have nothing conclusive because the tumor sites will still be active and toxic from the effects of radiation. At six months this is also the basic expectation, but it’s possible to show a clearer picture. One year after the end of treatment is when we really expect to know what’s what. That’s when we’ll get a clear picture if there’s anything active inside me and if not, great, I begin annual surveillance scans. After five years of no cancer I’m “cured.” If something pops hot, well there’s a lot of “it depends” – mostly on location and what kind of treatment based on that. If it does come back or has spread since the start of treatment, the most likely place is to my lungs. The MedOnc thinks this is actually not a complication that should scare me as he says surgery to remove tumors from the lungs seems fairly straight forward. I’ll maintain a healthy amount of hope that I don’t have to find out for myself.

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    Robot Dad

    My son is three and a half and has a speech delay that he’s been going to a program three times a week to work on so he can be ready for pre-K next year and/or the year after. Now imagine his dad is talking to him using a robot voice on a cell phone and hand and arm signals that would make Dick Winters proud.

    He actually did pretty well, shockingly well. In fact, both my kids were able to adapt remarkably easy to dad’s new reality. I am pretty proud of the resilience these two have shown over the last two years, they’ve been handed tough circumstances not of their making and have shown time and again they have so much potential to rise above it.

    My daughter took a walk with my mom around the neighborhood and made many wishes on dandelion seed puffs “I hope daddy feels better soon” because I know she misses the version of me that was fun, energetic, and mobile. I miss that version of me too, sweetheart…

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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 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.

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

    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.

  • 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.

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    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.

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    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.

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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 12: Intermission

    The Hunger Games

    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.