CPT Cancer

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

Tag: army

  • Remission 1

    (Author’s Note: This was written over the course of several days so there may be some inconsistencies with present tense)

    NED

    Hi sports fans, it’s been a little bit but I’ve been thinking about this entry daily since I pressed “publish” on the last one.

    I’m going to bury the lede here a little bit because we have a lot to go through, but if you’ve been on a ride at  Cancerworld you know this is an overall good update based on the title.

    It’s been almost a month since my last update. I was dealing with some big feelings and preparing for the next week and the ominous first post-treatment PET scan. Life has improved a bit since then on most fronts, so forgive me while most of this is going to be in the past tense covering the month of August to this point and then wrapping up with a look toward the future. These entries aren’t going to stop; I’ve made a commitment to see this through to its natural end: either being declared “cured” in five years or my untimely death from a recurrence. Ideally the former, but, god has seen fit to continue my character development side-quests with regularity so you never know. I feel like I owe to someone that will read this in the future that just got their diagnosis and needs perspective on the complete journey.

    I’m not going to belabor the PET scan’s finer points that I’ve covered in depth earlier in this tale, but at least this time I had the benefit of experience. The fasting wasn’t so bad this time around because I knew what to expect and game planned a little better, and my dad was on the ground to help me manage my energy levels by doing grandpa shit with my kids over the course of the first week of August which was a tremendous help. The first week of this month was probably the most consequential of my recovery phase in terms of discovering what my current condition actually was.

    While I was slightly bummed I had to retain my chest port, it really does make all these post-treatment medical happenings a breeze. Anytime a doctor, nurse, or medical treatment facility wants to sink a line in me I don’t have to worry about PFC Fuckknuckles or 2LT Lastinnursecollege hunting for a vein in my arm like they’re chucking spears at a mouse. Just by saying, “I’d like you to access my port,” I unlock the VIP nurse treatment. I’ll be somewhat sad when I have to get rid of it next year and have to rejoin the commoners at playing blood-draw roulette in the Army hospital lab department.

    I say all this because at the PET I had the radioactive serum injected right into my chest instead of the redwood gauge needle they used last time in my arm. I tell ya, the Army should look at just giving everyone a chest port while serving- it really does save time and heartache when it comes to draws, injections, and IVs.

    Within a couple days the results were read by radiology and relayed to me from a nurse at my MedOnc’s office: No Evidence of Active Disease (NED in cancer shorthand). I was officially in remission. Hell yeah brother, cheers from recovery. I still had to see my RadOnc at the cancer center the next day, and the ENT a few days after that, but I didn’t have any reason to believe they’d dispute those findings even though they’d still want to each scope me just to take a look for themselves (ostensibly to train the residents).

    That’s the extent of the latest formal medical news. There was no grand bell-ringing like there is after the final treatment. No congratulations, no handshakes: just a phone call from a nurse telling you the good news. My reaction was that I had no reaction. Imagine a person dryly saying, “neat,” with a straight face and no emotion and that’s basically the space where I was and largely still am. This will follow me around like a shadow for the rest of my life. I’ll get excited over getting small parts of the old me back, but overall it’s hard to get too worked up when my own body is a haunted mansion that I’m stuck inside for the next 35ish years.

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

    There have been tiny victories, though, shades of my old self trying to break through the fog of recovery. My taste buds and saliva/mucus glands are lagging a little bit behind where they should be, which has negative effects on my mood and appetite, but they have their moments. I was finally prescribed something for drymouth but haven’t started it yet because I wanted to see how it would impact me once the kids go back to school vs. managing new and exciting side effects while still having to solo parent them. We’ll see next week, I guess. Maybe it’s a game changer that accelerates recovery or maybe it’s another ineffective medication in a long sad line of ineffective medications during this gong show. I’m not betting the farm in either direction.

    What’s even more exciting, to me, though, might seem wholly insignificant to most of the people reading this: my medical team and leadership kept their word and kept the Army out of my business. My new career manager called me this morning asking me my thoughts on a career move I was supposed to make last year but opted to push to the right so I could complete the first year of the journey where I am now. He was looking at my file and saw no flags, and no administrative or medical markers that indicated I couldn’t move or be moved. This is exciting for a couple reasons: One, if you spend too much time being flagged (marked as non-deployable or otherwise generally invalid) for medical reasons this will trigger what is called a medical separation board: where the Army brings together the best and brightest bureaucrats to determine if you are fit to continue serving. This is a perilous and stressful process if you absolutely do not want to get kicked out of the Army, which I don’t. No matter my misgivings with how things are and have been transpiring in the world since we lost Harambe, I still believe the republic is durable and the Army it’s most durable institution- one worth serving no matter how much I bitch to the contrary. I’d like to stay for the long haul, or at least until I secure a pension so I can live out my days being the yeoman farmer that Jefferson always wanted us to be. My doctors did me a solid by filing the paperwork into the medical records system, but making sure the administrative system wasn’t the wiser by not officially limiting my medical readiness (however they were, and remain, prepared to do this if my leadership ever showed a hint of interfering).

    The second reason, and perhaps more importantly, my leadership actually put the “people first” mantra into practice. I was told, “Do not come back until you are healed/ready” and contrary to the normal pessimistic view many in the Army have by saying “mission firster,” no one pressured me to return or even check whatever administrative block I’d become delinquent on during my absence. No one flagged me or demanded I submit to some sort of archaic accountability procedure by shoving me into a recovery unit. If you’re a leader, take note: Your people have four to 20ish years in the Army, but they need that body until they die- act accordingly. 

    My leadership elected to forgo a body in the shop and instead saw that sacrifice in an investment: “we can have a healthy person back who can contribute in some kind of way later, or we can get a broken and possibly disgruntled person now.” You’d be shocked at how many leaders get this dilemma wrong… mine didn’t. I’m grateful there are still these kinds of people leading other humans in the Army.

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

    The real MVPs this month were my friends and family that stepped up to help me out. When I was on my own in the time between when my mom left and the kids got here, it was pretty easy to live on this plane of reality. Sure, I had appointments, body maintenance and tasks, but largely when you’re only responsible for yourself and your body just wants to sleep all the time it’s not difficult to survive. Boring, unfulfilling, but if your only task is to heal that’s pretty much life.

    Inject two small humans into the mix that depend on you to survive and that changes the calculus. My three year old son is Terminator: he cannot be bargained with, he cannot be reasoned with, and he will not stop… ever. I’m half-joking of course, but anyone with an active three year old boy knows it’s a struggle for one healthy adult to supervise him let alone adding his eight year old sister to the mix. They are the absolute light of my life, but they suck energy like a black hole. My parents, aunt and uncle, and friends deserve a lot of the credit and praise for my recovery up to this point. Without them I’d be even more of a shell of myself.

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

    The Long Game

    So I’m in remission, what now? Welp, now we wait. There’s nothing I can “do” besides not do things that might exacerbate a recurrence or slow down recovery, like smoke (I haven’t smoked anything more than a cigar per year in years) or drink (I was sober-adjacent before cancer and even more so now). I still can’t “overdo it,” whatever the fuck that means anymore, but I’m supposed to be in some kind of semi-recovery state through May. If I’m not around 90% my old self by then apparently…something happens? I’m not sure, I’ve not broached the “what then?” with my medical team. After the first year my only (medical) objective is to survive without a recurrence for four additional years. Neat. That definitely won’t loom over me.

    My remission isn’t the only long game in my life however. My career, co-parenting, and financial goals are all in “long game” status. Very few things in my life shoot dopamine into my life. The instant gratification of some big non-cancer milestone just doesn’t exist right now. Now that I’m returning to work I’m going to take a crack at getting back on the ice weekly, but at a higher-level scrimmage where I’ll probably feel like an old giraffe on ice the first few skates. Hunting? Sure, but I’m pretty sure my last name is an old German word for, “can only find animals out of season.” So while there are tons of other benefits to those two loves of mine, neither is poised to give me a big “W” anytime soon. That’s ok, I guess, but the test on my patience and discipline is constant. At least I can drink coffee again. I’ll take a small W in lieu of a larger one for now.

    I have a lot more that I want to say, and have been thinking about, as I begin to start seeing my treatment and recovery phase more and more distantly, but I think I’ll push this update out and let those ideas marinate a little while longer.

    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.

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

    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?

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

    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.

  • 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.

  • Recovery Week 1

    When you ring the bell at your final cancer treatment there is no magical test they administer to tell you that you are cancer free, in fact, all of your doctors will certainly tell you you are not cancer free… but you will be.

    See, radiation and chemotherapy are cumulative treatments. This means that as you continue to do them they continue to build up in your body to keep your cancer first in check, then kill it, and keep it from reproducing. The effects of these treatments are meant to outlive the length of the treatment by design. So, for about the next 90 days I’ll have chemo and radiation in my body doing battle against what remains of the cancer cells in my body.  In three months I’ll get the first of my quarterly PET scans to see if there is any remaining cancer but my medical oncologist, Dr. Ferrell, warned me that the site will likely be too active with toxicity to be conclusive. My 6-12 month scans will be the ones that tell the tale accurately.

    A clean scan means there’s, ostensibly, no more cancer left in my body. A scan could also reveal it spread at some point and I need a new treatment to address it, or that it isn’t all gone in the original site and we need to figure out a new plan to kill the rest of it. Both, as you might imagine, are not the outcomes I’m looking for but it’s not really in my hands.

    As I alluded to in my last post, while it was a very touching moment when I got to ring the bell at the proton center, it was actually the beginning of a hellish week for me. I was warned that recovery would start off with two terrible weeks before I started to notice actual recovery and improvement but good lord.

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    Hydration

    As I’ve mentioned before, I receive regular “hydration” infusions that have increased in frequency to the point where I have it done daily at the Army hospital now. Every day for the next few weeks I’m scheduled to go in for an hour and get an IV of standard sodium chloride fluids to help stave off dehydration until I can get enough fluids in on my own either through my feeding tube or orally.

    At first my hydration appointments were an amalgamation of times at the cancer center in Seattle and the oncology department at the Army hospital, but finally I was able to get into the outpatient infusion services at the Army hospital where they have the capacity to accommodate someone like me that needs daily treatments.

    Average IV infusion experience at an Army hospital.

    Over the weekend I had the feeling I was going to be in trouble, as my nausea was to the point where I didn’t want anything through my tube and even medicines were off the table to include nausea and pain meds, because they inevitably made me vomit. In the back of my mind I figured if I could just make it to Monday’s hydration appointment I’d feel right as rain afterward. I was wrong. I didn’t feel better at all.

    I was now finally caving to the idea that I might have to go to the dreaded ER to wither and die in triage while they figured out what to do with me. My mom had been on the phone with my oncology case manager and the wheels began to turn to get me admitted for at least a night to get me back on track.

    The next day, Tuesday, I felt half dead. My mother wheeled me into the infusion clinic and I had to lay on the floor just to avoid falling out of the chair. I received my infusion but was shuffled into a private room after to wait. I saw Dr. Ferrell and we had the discussion that if I had to go to the ER I’d rather just go home because I had zero faith the ER was going to be good for me. He tended to agree given the ER’s trust level in that facility, and was working a deal to get me into the inpatient floor for family medicine. I was tired, in a bad mood, and felt terrible. All winning combinations to make great decisions with.

    The family medicine team came to see me and I was not kind to them. I didn’t understand what they were going to do for me that was different that what I was doing for myself, or could do for myself, at home. I waived them off and wanted to speak to Dr. Ferrell again. Someone needed to tell me what the hell was going to happen in a way that made sense to me or I was just going home. I wasn’t going to go resign myself to a night of misery in the ER, or have another night like I did when I got my feeding tube placed, as a revolving door of medical pros just trying to make it through their shift acted like they gave a shit about me for 12 hours until they could wash their hands of me and go pound beers at MacNameras.

    Dr. Ferrell, visibly annoyed by my resistance, came back and was able to satisfactorily explain everything I needed to understand and my concerns. Ok, fine, I’ll go. But if this sucks for no reason I won’t trust any of you ever again.

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    The Resurrection

    I was wheeled up to the family medicine floor of the hospital and taken to a private room, thank God for being immunocompromised, where I was laid in bed and hooked up to a new IV and weighed. 170. Holy shit. That’s 15 pounds lost in less than six days. I haven’t weighed that much at my current height since I was 19 years old. This, as you might imagine, freaked me out a little bit. Not the lightest I’ve ever been at this height, but close enough. I have my work cut out for me during this recovery.

    Throughout my stay at family medicine I was blessed in the sense that the daytime attending doctor remained the same the three days I ended up being there, and 80% of the nurses were excellent. The remaining 20% I’d classify as “good enough to keep me alive.” I was continually fed IVs and eventually feeding through my tube was reintroduced at a crawl, but increased gradually through my stay. My nausea meds were reintroduced through my IV and overall I began to feel better by about one percent per hour. Over the course of 72 hours my gains were significant. By the time I was discharged Thursday afternoon I was feeling optimistic that I could carry on at home and do enough to survive this awful phase of recovery.

    Through the rest of the week to today, Sunday, I’ve managed to remain fairly steady in my feeding regimen, increasing the pump rate slowly, and I’m hoping to break 100 ml/hour later this morning. 

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    Mother’s Day

    Today is Mother’s Day in the USA (I have no idea if other countries celebrate it or if they do, what day) and I’d be remiss if I didn’t talk about my own.

    If you’ve never had to be a caretaker for a highly independent 38 year old man going through an aggressive cancer treatment in a highly sensitive area, well, I don’t think I can recommend it. No one is equipped to do it without pay unless they are a loving mother. 

    My mom has been here more or less from the start and jumped in with both feet, which, as I mentioned above, has caused friction at times. I’m highly independent, like how I manage to keep a lid on this shit and function as an Army officer is a mystery to me and those who know me best. Giving control over huge swaths of my life to someone who had previously had that control for the first 17 years of my life was a process in itself, and not always a clean one. There have been arguments, misunderstanding, disagreements, and miscommunications right and left as we both try to navigate this process. The difference in dynamics because I am an adult that is still ultimately the decision maker in my life is also something that can’t be easy to navigate for a mom that just thinks she’s doing what is in her son’s best interest.

    My mom is doing, and has been doing, an amazing job. Everything I’ve needed her to do, or asked her to do, she has done without a second thought or complaint. Most notably, facilitating visitation with my kids. The kids get to see grandma most weekends now, and while my oldest understands why, they still enjoy their time with her that normally only comes once a year when she visits us. This time is invaluable for both of us.

    She’s functioned as my clerk, secretary, personal assistant, nurse, chauffeur, and counselor over the last three months and I don’t think I could have done this without her. I really have no idea how I’d have made it this far without her, specifically, doing the things she probably thought she was done doing 20 years ago. 

    Thank you mom, I love you, and I will never be able to properly repay what you’ve done for me over my life. Thank you for being my mom, and thank you for being a great mom.

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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.

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    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 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.