CPT Cancer

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

Tag: feeding tube

  • 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.

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    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.

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    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.

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    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.

  • Recovery Week 3

    Monday morning didn’t show any improvement in the status of my feeding tube. Absolutely nothing was getting in and I had woken up to a bloody mess on my abdomen. We called interventional radiation and told them I was coming in and needed to be seen again about my feeding tube.

    As soon as I was brought into the exam room the nurse looked at the site, examined the area, and knew my pain levels were not normal. I had taken a picture of the aforementioned bloody mess just to make sure they knew I wasn’t exaggerating and this time the nurse called in the doctor. The doctor knew something was up beyond a normal tube failure and agreed that I needed to be put on some kind of narcotic and aside from a tube replacement, I’d need skin burned off because the skin from underneath the top layer was growing through the tube site and “granulating” which was causing a lot of the pain, discomfort, and discharge.

    I was brought back into the IR procedure room and loaded up on fentanyl, but sadly not sedated because I was an emergency case and they didn’t have time to do a proper work-up. This was unfortunate for me because as previously mentioned elsewhere in this blog, I have an incredible tolerance/resistance to narcotics. The fentanyl didn’t make a dent in the pain that I felt when they removed the feeding tube, which involves shoving a wire down the tube, deflating the balloon in your stomach that holds it down, and pulling it out through a hole about the size of a .22 round. Once they had the tube out, they used some sort of silver based compound to chemically burn off the skin that was trying to grow outside my body, and fortunately the 400mg of fent blunted that just enough that I didn’t feel it until they were done.

    Mind you I am awake and fully conscious. So I am white-knuckling bedsheets and have a fat roll of sheets in my mouth to bite down on because it was all I had. I was doing this medieval style. When they’d finished burning off the skin they had to re-sink another tube in and that felt horrible, especially as they inflated the new balloon. Pray you never have to experience this under these circumstances because it is just the worst.

    An approximation of the hardware I have hanging from my abdomen.

    It turns out, somehow (probably rapid weight loss induced) my balloon was working its way out of the hole, blocking it and resisting anything trying to work downward. As soon as the procedure was done and the immediate burning, pressure, and pain began to subside I asked for a test flush just to make sure everything was in working order. Right on the table they flushed the tube with some water and I didn’t feel any resistance, pressure, or pain- this was a game changer.

    Once we got home, I began feeling instantly better in every conceivable way. I hooked up the feeding pump and got to work but it instantly began to cause a gastro-reflux and I quit in short order. I determined gravity feeding was the path forward at this point and I was correct. Gravity feeding not only wasn’t causing me any issues, but it was way quicker and less imprisoning than being figuratively chained to an IV pole for hours at a time.

    This experience was also the kick in the ass I needed to just get on with progress, whether it was comfortable or not. My pain meds either aren’t effective, or I’m not taking them due to my team’s fear that they’ll trigger my nausea again and delay my recovery again. So I just started forcing myself to swallow. Now, I could always swallow throughout this ordeal, you have to not only keep the muscle function active to avoid atrophy, but because the saliva my body is making needs to go somewhere. What I mean in this case is swallowing water. I just started forcing myself to swallow water on Wednesday. First day, 800ml, not bad. Second day 1L, and every day after no less than 1L, in addition to my daily hydration appointments meant I was getting ⅔ of the water my oncologists believed I needed. I’m working toward that still but sooner than later I’ll start getting weaned off of the daily hydration until eventually I don’t need to go at all. That will probably spell the beginning of the end of my feeding tube and chest port, which would be a huge landmark in my recovery second only to a clear PET scan- whenever that might occur.

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    On Tuesday, just after my tube was replaced, my mom’s husband arrived from their home in Florida. She’d not seen him since she left the second time in March although they spoke daily on the phone at this point. They slept in my room while I continued to live in my recliner; no real hardship as I was used to it at this point.

    I’ve always gotten along very well with him, almost too well, as in the past I’ve been chastised for having a little too much fun with him and getting him into trouble whenever we got together back when I was significantly less sober than I have been these last few years. There’s absolutely no friction in our relationship and I’m thankful for that.  This also brought the opportunity forward for me to feel like an absolute outlaw. As they went out for lunch dates, I took the opportunity one day to take my second vehicle, an old minivan I inherited when my grandma died, out for a spin a few blocks away to Goodwill to get the kids some summer clothes.

    As soon as they were out the door I flung a donation bag in the van and was off (this all happened at “old man waiting to die speed” as I don’t have the kind of stamina or coordination to literally scurry). I felt like an absolute pirate. I was sailing the open road for the first time in two months and it felt illegal. I dropped off the bag and went into the store and probably looked like a creep as I did something I’ve done 50 times before and walked the floor at Goodwill, but with a giant smile. The end result was me feeling completely exhausted. Just a few minutes of driving each way, what amounted to a 30 minute trip tops, completely wiped me out. A paragon of stamina, I am not.

    It was about this time I started drinking shakes orally and easing myself into semi-solid foods, which is still a very loose term. More like “liquids that aren’t water or technically called a drink.” Apple sauce was achievable with sips of water after each spoonful, as was soup broth, but yogurt and ice cream are still not easy to consume and taste somewhat bitter depending on what else is in them. It’s worth mentioning I cannot taste anything still, but at least they are outside the norm. Most things that aren’t water I put in my mouth just taste chalky in consistency and that’s it.

    Of course another benefit to having him here is that the kids get to see grandpa, which typically only happens once a year. My daughter was sick all weekend and bound to the couch, but my son was basically stapled to his hip in a way I’ve not see before. It was really something. “Where’s pop pop?” was the first thing he said as soon as he lost sight of him, and he tried to be not more than a few feet from him at all times.

    I feel like in may ways this was the week I’d begun to turn the corner into real recovery. I hope this is the last entry that has a spicy story about some sort of setback.  Hope, however, is not a good planning factor.

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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.

  • Recovery Week 2

    I’m halfway through my third week of recovery at the time of this writing and it feels like it’s been three months. Time moves differently when you’re a cancer patient that’s more or less bound to your home or a treatment facility, it stands still, drags, and flies from moment to moment. This is a point in my life where it seems like the clock just sort of does what it wants to, depending on how I’m feeling.

    I’m going to remain on publishing schedule and keep this post focused on week two of recovery because it sets up the hum-dinger week three has been so far very nicely.

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    Feeding Frenzy

    When I left off talking about my recovery last week I’d mentioned how I was steadily increasing the pump rate to increase my formula intake through my feeding tube. I saw this as a sign of progress and the slow climb back to how life looked before the last week of my treatment and first week of recovery when the wheels totally came off.

    The problem I’d started to encounter slowly was the site in and around my feeding tube. It was starting to ooze more puss than usual, and leaking stomach contents, in addition to being more and more resistant to taking higher rates of pumping or manual syringes. This is obviously an issue because this is my lifeline of nutrition, what with my throat being at too high of a pain level to swallow and all. I still wasn’t taking any of my pain meds save the patch and occasional tylenol because my pain management doctor was afraid to let the breakthrough nausea out of the barn by reintroducing morphine.

    It finally came to a head when I could barely flush my tube from a physical and pain standpoint; we decided to call interventional radiology and asked that I be seen about an emerging issue with my tube. Whatever was happening wasn’t good and I did not want to earn another hospital stay.

    We showed up to IR at the Army hospital early Monday morning and were met by an IR nurse that examined my site and said everything looked normal and everything I was experiencing was normal aside from the pressure. She cranked down on the rubber guard to push it closer to my skin and said short of replacing it there was nothing she could do at the moment. She did a test syringe flush and there was some pressure but it did seem to go a little smoother than my previous attempts so I just accepted her assessment and we went on to my normal daily hydration appointment.

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    Family Feud

    At this point I was still sleeping in the recliner every night, doing daily hydration at the Army hospital, and regularly taking what meds I was still allowed to take while trying my best to feed myself around this schedule. The routine was mostly unchanged, except that I finally had visitation with my kids again this weekend. This was especially one to look forward to because of a quirk in the parenting plan that had them away for nearly three weeks. It was also really important to me because throughout the week their mother had been putting me under siege through an aggressive text thread between us attacking my character, exposing her desire for not only more of my money but more of my time with the kids, and being generally allergic to accountability or responsibility. This isn’t uncommon and it was probably a bit overdue and she was probably tired of pretending to care about my struggle. We are good co-parents 98% of the time, but that 2% when she decides to have a meltdown and blow up our relationship for a little bit of time is generally out of nowhere and the result of whatever stress in her life building up and manifesting itself into blaming all of her problems on me. I’ve survived far worse, and eventually she’ll pull her head out of her ass and start being friendly again- it’s usually a waiting game. C’est la vie.

    My daughter went with my mom to a small street fair outside a movie theater, so they grabbed lunch at a nicer place than she’s accustomed to going, she got her face painted with a Minecraft character, and then they went and say Minecraft- a film she’s been begging to see ever since the previews came out. I’m glad they were able to spend a quality day together.

    After the kids left the pressure returned to my feeding tube and it was not budging, there was no way I was going to be able to feed myself or even give myself medicine anymore by this point. It seems as soon as I fix one issue, something else fails. Hell yeah brother, cheers from the Army medical center.

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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 3: So It Begins

    The start of my third week of treatment was marked by optimism. My mouth had begun to stabilize somewhat, with dry mouth getting a little better, albeit with all of my taste having retreated almost completely. Now all that remained was hints of “sweet” otherwise everything was bland and tasteless. My swallowing function was still going strong with no detectable soreness, and my skin was still fighting the good fight.

    I made it to proton treatment number ten, which means the bar chart on my dry erase calendar could have one more bar filled in and the visual representation of being roughly one third of the way treatment now existed in a physical space. This is an important psychological barrier for me to be able to see.

    As the week went on I honestly felt good, like I was beating the odds of side effects. I began to have hope, something I rarely let myself possess, because hope is not a planning factor.

    Thursday came and went and while I had the hint of a sore throat, it wasn’t anything I felt I needed to be concerned about. I meet with Dr. Panner and my assigned RadOnc nurse, Angel, every Thursday before or after proton treatment just to see how I’m fairing. Although I was in a very energetic mood and was unbothered by my tinge of sore throat, we agreed it was better safe than sorry to prescribe me some kind of oral numbing agent- a lidocaine gel similar to what a dentist might use or prescribe. This was possibly the last day of somewhat normal existence.

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    Welcome to the suck.

    Thursday night into Friday morning I slept fairly normal. Normal sleep for me now consists of waking up no fewer than three times to pee because of the extreme lengths I was going to to hydrate myself. When I woke up in the morning my entire world had changed though. The back of my mouth was sore on both sides by my molars and my little ting of sore throat had become a full blown sore throat. I felt right away as if the side effects had caught up and violently overtook me. I was warned that three weeks with no side effects was reserved for a small group of people and my time with that small group was now over.

    Everything sucked. Eating, drinking, swallowing, talking. All unpleasant at best, painful and frustrating at worst. This is probably my new reality for the foreseeable future.

    Despite this, I went through with taking the kids because that’s the only thing left if my life that brings me joy. My daughter had her final hockey game of the season and afterward was invited to an all-girls hockey event afterward. She is getting so much better at skating and playing and the feeling I get watching her is always brought down by the knowledge that one day she will have to stop. The Army will move me sometime next summer, and because she lives in the middle of nowhere with her mother, that’s the end of hockey for her unless some miracle happens and I become the full time custodial parent.

    It was a beautiful weekend and we all went into my backyard after to pull weeds out of the planter boxes and preparing them to plant new seeds. I ran out of energy fairly quickly, however, and I told her we’d have to plant the seeds at her next visit. She was a little disappointed but she knows dad is sick and there are times where I just have to sit down for a while.

    Unfortunately that visit won’t be for two weeks because I swapped next weekend for this one, being that I didn’t think it was wise for me to have the kids after chemo, given how the effects from the last round didn’t cease until the end of the weekend. I never don’t want to have them, but fortunately she is always asking me for swaps to accommodate her schedule so I am able to do the same hassle-free.

    She only gets them one weekend per month, the first full weekend, which was part of the informal agreement we made to allow her to move out of state later codified in a temporary then final “parenting plan” in court. Knowing what I know now, I’d have never allowed her to move in the first place without very steep concessions, but we only get one play-through of this life and the lessons I learned during my divorce proceedings will never have to be repeated, but those thoughts are for a different entry.

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    Tubular

    Starting week four I knew that this was the end of me eating food like a normal person.  I spent some time discussing how miserable of an experience I had having my “G Tube” (aka feeding tube) installed but now is when it was going to enter my life as a critical component of my well-being.

    I made the decision to start tube feeding Sunday night, to commence Monday morning. Tylenol was taking the edge off the sores near my molars, but wasn’t lasting as long as I needed it to and swallowing two pills every six hours was testing my throat.

    Come Monday morning I tried to drink a yogurt-based banana shake but I felt extreme discomfort that was akin to when I tried to eat an actual banana Friday morning; it was akin to suffocating. We decided then and there that banana-anything was a non-starter as it irritated my throat to no end in a way nothing else had. I was able to sip on a Chobani drink throughout the morning, but tube feeding was imminent. There was just no way I’d be able to get the calories I needed orally at this point.

    After we returned from my 14th proton therapy treatment I sat in my chair with a catheter-tipped 50 ml syringe and a bottle of Nestle-branded unflavored liquid that measured 375 calories.  Foolishly, I just pulled the plunger out of the syringe and dumped the liquid in to the 50ml mark. Why was this foolish you might ask? Like most milk-based drinks they need to be aggressively shaken to break up clumps in the bottom.  On the fourth pour a couple big clumps blocked the tip and slowed the gravity feed down to trickle. I tried a warm rag at first, but that did nothing so I carefully tilted the syringe down several times (at least as much as I could without spilling) and that finally did the trick.

    I was feeling bold and knew I was running a major caloric deficit so I went ahead and gave myself as second serving. It went down easier than the first and I started to solve the problem.

    I’m a very active person by my age and peer group. Playing hockey up to four times a week, hiking distances of up to 18-19 miles per weekend day during the summer, lifting weights three times a week, and driving close to a thousand miles per week because of my custody and work obligations. When I was diagnosed I snuck in one morning of stick and puck (think of a public skate, but for hockey) with the boys and since then the most athletic thing I’ve done is walk on a beach with the kids or mowing my grass. The rest of the time I’m basically an active vegetable.  I don’t wear any kind of fitness tracker or count calories because that’s never been a concern of mine with my self-control/awareness, vanity, and activity level.  However it’s basically been a focal part of my life since I started this adventure. I got up to 204, and while those had slowly been coming off over the last three weeks of treatment, I was determined to maintain a healthy weight despite my treatment and all the stories I’d heard of people becoming emaciated from lack of intake.  

    So it becomes a math problem.  The average American, who is probably overweight, eats like shit, and doesn’t exercise enough if we are being honest, needs 2,000-2,500 a day if food labels are to be believed.  That means I need a minimum of 6 cartons of the Nestle tube food per day. I can “eat” two in one sitting comfortably, possibly more depending on how much I choose to experiment. I can feed every two hours if I take two at a time, or an hour on and and hour off if I split them up. What sucks though is the act of feeding itself in that it’s takes focus and arm stamina to hold the syringe upright.

    Following the advice of Trevor, who you might remember from an earlier post as the other active duty Soldier I’d connected with that had a similar cancer and treatment plan, I pulled the trigger on an IV stand and 1000 ml bags to gravity feed myself unassisted. They weren’t cheap, but they are allegedly reusable. I’ll report back when I’ve had a chance to use them.

    And that’s it for this entry. I am writing it as I receive 1000 ml of IV fluid and medications at the Army hospital while I prepare to receive my second round of Cisplatin chemotherapy today.  I’ll see you on the other side.

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

    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 5: Eat. Pray. Puck.

    Woo-woo shit.

    There are going to be topics we circle back and revisit out of order from time to time, because when you don’t decide to write a cancer blog until eight weeks after first detection, things are lost in the whirlwind of activity that happens during the opening salvo of medical intervention.

    Rewind to 1 February. In Ireland, and places with other strong Irish-Catholic communities, there is the “St. Brigid’s Eve” tradition.

    “St. Brigid’s Eve, celebrated on the night of February 1st, which is the eve of the Feast of St. Brigid. In Irish folklore, St. Brigid is considered one of the patron saints of Ireland, and her feast day marks the beginning of spring and the Celtic festival of Imbolc, which celebrates the coming of the lighter, warmer days.

    One of the customs associated with St. Brigid’s Eve involves hanging cloth or rags on a tree branch or a bush. This is often done as part of a ritual to honor the saint and invoke her blessings for the year ahead. The act of hanging the cloth is meant to symbolize the blessing of the home and protection from illness and misfortune, as well as a way of asking for a bountiful year.

    St. Brigid herself is often associated with healing and fertility, so people believed that by hanging cloth on the branch, they were invoking her powers for good health and protection. In some variations of the custom, people also would tie pieces of cloth to the branches and leave them for the night.” -ChatGPT

    One such place that this tradition is celebrated is Newfoundland, Canada, where Addison is from. We were walking into my house the evening prior to the Vancouver visit and she said, “Shit, I almost forgot.” and proceeded to take off her cloth wristband and tie it to one of the shrubs in front of my house.

    Me, puzzled, “What are you doing?”

    “It’s Saint Brigid’s Day, we are going to leave it on this bush tonight and in the morning you are going to wear it for the rest of the year to bring you healing. It’s Newfie Irish-Catholic woo-woo shit,” she said, matter of factly.

    In the morning, as we headed out the door to go on our trip, she took it off the shrub and put it on my wrist.  I figured at this point I’d take all the help I can get and, if nothing else, it would make her feel better.

    Fast forward a day. 3 February was like most other Mondays where I roll into the office and get hammering on whatever task I was dealt for the week. My boss had already begun to slide things off of my plate and had all but cancelled my two-week trip overseas happening later in the month, so my task list was shrinking with every new piece of medical information coming to me. I kept chipping away at my inbox when I got a text from my mom: a link to some sort of Catholic site describing Saint Blaise Day.

    Mind you, just prior I’d found out my official diagnosis and biopsy results, so I’m fully invested in getting as much help from every dimension possible, including the spiritual one. I clicked the link and uttered, “No fuckin’ shit?” when I noticed that this day, 3 February, was Saint Blaise’s Day.

    “St. Blaise’s Day is celebrated on February 3rd and honors St. Blaise, an early Christian bishop and martyr who is the patron saint of throat ailments. He is also associated with protection from diseases of the throat, and his feast day is marked by a special blessing known as the Blessing of the Throats.” -ChatGPT

    I knew what I had to do: I had to embrace the woo-woo and unknown mysteries of the universe. The coincidence was too real for me at this point, I was on a mission from God.

    I walked to the staff duty desk and asked where the command Chaplain’s office was. It was just across the parking lot in the basement of another building. Much of the “Special Staff” in my unit exist in such circumstances, and the man with the connection to The Man was apparently no different in this regard. The only Chaplain in the office that late morning was The Command Chaplain. As in, a full-bird Colonel, but he’s a Chaplain, and like most, very affable despite our rank disparity.

    I knocked, and with a big smile he welcomed me into his office.  I gave him the elevator speech about my cancer, the holiday, and that I needed to find a Catholic Chaplain by close of business (COB) today.

    Understanding the serendipity of this encounter, COL Chaplain went to work tracking down a Catholic Chaplain. About an hour later I get a text from an unsaved number:

    “Kyle, this is Father Houseman, COL Chaplain sent me your number. I’m sorry to hear about your cancer! What times work best to meet?”

    God may not always be responsive, but his staff sure is. We worked out a time to meet that afternoon to perform the blessing at the Main Post Chapel.

    Something God’s staff also does particularly well is physical security. Every fucking door on that chapel was locked at 1630. I found a door that was open in the office wing of the chapel, however, and roamed the halls of the empty wing of God’s cubicle farm before finding the main hall with the rows of pews, pulpit, altar, the whole shebang.  It was eerily quiet. I expected my presence would draw out Arnold Scwarzenegger like it was the last scene from End of Days.

    See, I’ve always, at best, had a rocky relationship with the almighty. Unknowable things have never really sat right with me and I always treated the religion with a high degree of suspicion. Like, if this dude really exists why doesn’t he show himself? What is he hiding? What’s he have to lose by making it obvious to us that he exists? This skepticism has served me generally well in life, but the older I get the less other explanations previously thought more plausible by my scientific mind start to make sense. My relationship with spiritual things now can best be described as, “Hey, listen, there are a lot of things we can’t explain, will likely never be able to explain, and however you interpret that is fine so long as you aren’t infringing on the rights of others to believe what they like.” That’s how I’ve sort of found peace and balance with what some call spirituality.

    I digress. Father Houseman entered the building from… somewhere, perhaps he materialized like the nun from Blues Brothers; I’m not sure- I didn’t ask how he got in. I approached him and we got right to chatting. One of the first things I noticed was his age: He was incredibly young. Easily ten years my junior. It was sort of odd calling this man Father, but I understood the assignment.

    He pulled out the candles, the appropriate literature, and uniform items needed to make St. Blaise’s throat blessing a “Go” at this station. We got down to business and he instructed me on when I needed to speak and what I needed to say. He completed the ritual and we chatted some more. I walked out of the chapel feeling like I did one of the few things I could do without the help of a doctor to fight this thing: I enlisted the entire might of the Roman Catholic church through St. Brigid and St. Blaise. Fuck yeah, winning.

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

    The Tube.

    Continuing from the end of the last entry, MAJ Rafferty wasn’t quite done grinding my view of the phrase “quality of life” into dust by explaining the back-end of long term consequences of the chemo & radiation tag team.

    “So, because we don’t like to operate on you while you’re being treated due to the risk of bleeding, we’re recommending you get your chemo port and feeding tube placed immediately,” he said, looking at me to gauge my response.

    My. WHAT?

    Because my throat is going to turn into a fiery red hellscape of pain and misery, they were concerned I’d stop being able to eat by mouth and lose a tremendous amount of weight, an unhealthy, dangerous amount that would significantly lengthen recovery. A feeding tube, pre-installed, would nip this in the bud by cutting out the middleman (my mouth/throat) and giving me life while simultaneously destroying my will to live, because if you are 38 years old with a feeding tube, the plan you had for your life has gone horribly wrong.

    They explained the feeding tube was only temporary, probably, and I’d be able to get it removed early in recovery if I managed to maintain my weight through and after treatment.

    Alright boys, fucking bet, challenge accepted. Feeding tube is up there with a colostomy bag on the checklist of shit-gone-wrong that would cause me to volunteer for the Ukrainian Army. I will maintain my weight so hard.

    I walked out of that meeting with a parade of referrals to schedule, and a horrifying outlook on life. Life before, during, and after treatment was going to be radically different and I had four days to live my best life.

    I spent three hours of that time wandering around the hospital scheduling referrals. See, when you are an active duty cancer patient, appointment hotlines and long wait times don’t exist. You can walk into any office, announce you have cancer, and shit all over the plebs with routine illnesses. You’re the king shit of hospital mountain. It was so backwards from anything I’ve experienced with medical scheduling in my entire military career up to this point, and it was glorious.

    I went back to the office after that because my coworkers had, to my complete pretend-surprise, barfed Party City all over my desk and coaxed me back into the office long enough to sing happy birthday to me and feed me cake. I don’t even like cake or most baked goods, but it’s bulking season, remember? They’re good people, so I played my part with a smile, even though my soul had been absolutely dismantled that morning after the Tumor Board.

    Oh yeah, I forgot to mention. My birthday was also that weekend. Whoo, party. #lastbirthday?

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

    Like a sheet of glass.

    After leaving the office party, I hit the road to get my kids. I travel about 700 miles per week, almost every week, to get them from their mother in Oregon. Why this is the arrangement is for another day, but we tolerate it pretty well, so it is what it is for now.

    My tube and port installation was scheduled for the following Tuesday morning, 11 February, so I knew this would be the last of the fully-normal Dad time they’d be getting. 

    As I drove down Friday I spoke with my mom on the phone, who is another hero of this story up to this point. She said she was coming out to take care of me and help with the kids during my treatment, the only question was when she was coming out.  We deliberated and decided it would be best if she flew in on Sunday or Monday so she could join me for the installation, recovery, and battery of pre-treatment appointments leading up to that time. She booked a one way flight to Portland on Sunday evening so I could get her on my way back to Washington.

    The kids were still blissfully unaware of anything at this point, not dads illness, not grandma spending a few months with him, nothing. At the time of this writing, they still don’t, but that time is quickly approaching.

    I was able to get them an hour earlier than normal so we got home in time to do their normal bedtime routine and prepare for the next day. On Saturdays my daughter has hockey, so we woke up and went out to that as we always do.

    By this point the word was out to my extended circles. I was wrangling my toddler son, talking with friends about my condition, and watching my daughter play (watching her skate out there is the joy of my life). I was starting to experience some fatigue talking about it again, for what felt like the 50th time in two days, so I started to isolate myself in the corner of the rink to watch my daughter. 

    Curiosity and concern are very natural human conditions, so I don’t blame the people close to me for wanting to know more, but it does get taxing having to have these conversations over and over again after having just lived them. Now I live in this weird space of, “how can I show this person I appreciate their concern without having to make this stump speech again?”

    After getting home my daughter baked some cookies, as has sort of been a little tradition of ours every few weeks, and we played the tic-tac-toe bean bag toss game in the living room. Some friends of ours hosted us for an hour or so that afternoon so I could get the kids some outside-the-house social interaction, and since these friends had already heard the cancer spiel and knew I wouldn’t talk about it in front of the kids, I knew that was a space of time I was safe from having to think too much about it.

    Me and the ex agreed to meet outside PDX at a later time so the kids could see Grandma for a little bit and I’d be able to spend some quality time with them on a Sunday at my place beforehand. See, Sundays are normally a, “ok, get up, eat, get ready, go somewhere like a playground for an hour or two, then hit the road by lunch” routine, so it was nice to be able to relax and eat lunch at our house here before getting on the road.

    The kids were elated to see Grandma for the first time since the summer, when she stayed with us for two weeks to help me not have to find childcare for my block of summer break visitation. We wandered around the Target right outside PDX for almost an hour waiting for their mom and it was relatively stress free- it was Super Bowl Sunday and Target was a ghost town. I could let them run wild in the store and not be that parent because there was simply no one else there to be bothered by it.

    I knew I had less than 48 hours of freedom when we returned to my house on Sunday evening, and I intended to do the one thing I knew I’d miss doing the most: play hockey.  I found that my local rink would be having a “stick and puck” (open skate specifically for hockey players) session Monday morning and I hit up my team’s group chat asking who was in for the “last skate” before I started treatment. In reality this will likely have been my last skate until well after recovery begins due to the ramifications of this specific treatment regimen.

    Monday morning rolled around and I drank my last cup of coffee for a few days, grabbed my bag, my sticks, and went to the rink. Four of my teammates showed up and something fantastic happened: No one else was there. We had the whole sheet to ourselves. What’s more, the rink staff actually cut the ice the night prior. It was smooth as glass and ready to be carved up. No divots, no cracks, no grooves in sight.

    Me and the boys dumped a crate of pucks and began fucking around with skating, shooting, handling, and eventually they started to indulge me by letting me 1 v 1 and 3 v 2 them on defense (I primarily play defense). It was going to be the best hour of my week, which sounds great… but the week had just started.

    The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.