I’m only sort of talking about cancer when I say that– more on that in a minute though.
See, when you start to reach a point in your journey where you start to feel like you’re breaking through plateaus, that’s when life starts to feel somewhat normal again. You can do the old things you used to do, sure, but they’re… different. Lately, I’m starting to feel less different in a lot of ways, and it feels good.
Now, that’s not to say I’m anywhere near an approximation of “old me” in many ways, but there are some notable changes:
The quality of volume of my saliva and mucus is starting to improve, and I don’t have to scrub the buildup off of my tongue daily.
My taste is starting to claw back some flavors, or at least essences, even if it is easily the biggest lag of all my treatment side effects so far.
My fatigue hasn’t improved much, but my ability to manage it has. I drink about double the caffeine that pre-cancer me used to, which is an increase of two cups of coffee per day to four or five, and about half the week I’m not waking up to pee three or four times per night.
My short term memory recall is still ass, but I’m getting better about writing things in my Notes app or on a physical notebook.
I’ve gained a whopping two pounds. Only fifteen more to go.
I’m averaging about one hockey game per week, and I am ruthlessly enforcing my limits out there. In beer league there can be a tendency for guys to stay “on shift” (out on the ice) too long, but I am the opposite. Rarely do I lose track of time; if I sense I’m close to two minutes into a shift I look for the first opportunity to climb back over the wall– less if I’ve had to defend a breakaway on that shift. I wish I could get back to being someone who could handle defending multiple rushes per shift, but it’s going to be a while before I’m that guy again.
I haven’t prioritized going into the woods since the opening weekend of elk archery but tomorrow I’m skipping out on being responsible for a day to try and find a bear in a unit I haven’t visited in a couple years to try my luck in the pouring rain. My intentions are pure– take it easy, be deliberate in all that I do, and do not take anything even resembling a risky decision. The weather will be against me and the Olympic rainforest is absolutely unforgiving in the fall; this is not the time to press my luck. If God decides I’ve been patient enough these last five years maybe my next entry will be written cloaked in a bear skin– or maybe my next entry will be titled, “how to activate your Garmin InReach SOS.” My guess is it will be something in between, given my luck. (Author’s note: This did not happen, I woke up after four hours of sleep, saw it was storming outside, and decided I was going to take a rest day.)
Speaking of taking risks, it’s time to expand more on the cliffhanger from last week: Sarah.
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Hoo boy. What a journey. As of this writing it’s been over one calendar month since I decided to pull the trigger on telling Sarah how I felt. Despite the loss of confidence, my body image issues, my emotional baggage, and my extreme desire to not fuck up a good friendship… I decided to go for it.
The existential crisis that cancer presents you with is different than an acute one like a car accident, combat, or bad fall. Sure, you can walk away from those things with a new outlook on life, especially if they require a long recovery due to injury, or if there was some sort of psychological scarring– but cancer hit me differently than any of those things. I was a hostage in my own body to a very dangerous and unpredictable assailant, and just like is the case in many hostage rescues, the rescuers can do just as much damage as the hostiles.
I say all of that because when I decided to go for it after two weeks of deliberating, including a couple conversations with my psychologist and cognitive therapist, my calculation of what I decided an acceptable risk was had changed significantly from “old me.” Now the fear of the “what if” and “things left unsaid/undone” is a massively weighted factor in my decision making cycle. I could have five months left, five years, or fifty years– I don’t know. It’s not unlikely that God has fixed the time and place of my death so living like I’m trying to compete against that feels pointless.
As an Army officer we are conditioned to always plan off of the “most dangerous course of action” so that we are prepared to deal with the less severe “most likely course of action.” This trains your mind to only see the most devastating impacts of being wrong, and does not do much to reinforce a positive mindset that tells you what is at stake if you don’t take that big risk.
I went from feeling 2025 was going to be the undisputed champion of, “shittiest year of my life” to “wow, life comes at you fast.” The last couple years of being close friends made the transition to “couple” almost effortless and just about completely deleted the courtship phase of the relationship. Now, I still do take her on a date every week, and we are planning out future overnight travels, but we were so comfortable together already that the trust and respect was already pre-positioned– all we had to do was explore the romantic/intimate side of our new situation.
In a lot of ways, “new me” extends beyond what I physically bring to the table now. There’s also been a massive spiritual, emotional, and moral shift. I’m making big, bold, decisions that were somewhat uncharacteristic of old me. At work life, with my personal life, and with my romantic life. What I mean is, I’m trying to do this the “right way” for once. She has the advantage of knowing a ton about me already through osmosis and general conversation when we were “just friends” but I committed to being vulnerable right off the bat with her and becoming completely transparent. The good, the bad, the ugly– I disclosed everything over the first week of our new relationship. Get it all out there now, fuck it, nobody can say later I was holding anything back and coming at this without the purest of intentions.
The flip side to this is that instead of slowly releasing the codes to the bombs, I just dumped them all into her lap. She possesses every key now. But that’s what love is, right? Giving someone the means to destroy you and trusting them not to?
This blog isn’t primarily focused on relationships, but that is part of the journey. This is part of the journey. She is part of the journey now. She’s expressed a deep regret over not “being there more for you” when I was sick, but she’s also not the first person to say that… and that’s ok. Everyone has their own lives, their own crisis to manage, their own priorities. There’s a very short list of people I’m disappointed in for not showing up for me more, and she’s not on it.
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There have been a slew of medical occurrences since I last posted an entry. Three times per week I’m receiving physical rehab (strength training and conditioning), once weekly I see a cognitive therapist, once every 3-4 weeks I see an outpatient psychologist, and most recently I did my check-in with the ENT. ENT, per tradition, scoped me and gave me an ultrasound. Three times each, to be precise. Once was the resident, once the resident and the chief, and once just the chief.
You might remember LTC Sierra, chief of ENT at the Army hospital, from earlier in our tale. She’s still there, and as usual she was in to see me after the resident was done with his initial run. Long story short, she thinks I’m fine but wanted to possibly biopsy me again because she doesn’t like the look of the lymph node that was treated when the cancer metastasized. She told me she’d deliberate on it, consult some colleagues, and get back to me. Great. Grand. Wonderful. NO MORE CANCER ON THE BUS.
That friday she ended up calling me back and told me that she ruled out a biopsy, but wanted to get in touch with Dr Panner (RadOnc) at the cancer center to see if they could order some sort of fancy new blood test to see if it was, you know, cancer again. I haven’t heard back on this in a couple weeks, but I have another PET in a couple weeks, so inshallah, I guess.
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.
(Warning: This is another long entry. There’s a lot to unpack here, so bare with me. Some of it is related to cancer, but skippable if that’s solely what you’re here for.)
I’m lost, but I know where I’m going.
This is a continuation of the last entry because things happen in here that pre- and post- date the hunt, but did not fit with that narrative, at least not cohesively, and I thought it important to tell that story as a whole instead of jumbling the absolute mess this entry is going to be. This one is going to be heavy, and you have time to bail now if that’s not the space you’re in right now to be reading it. Sorry, but you’ve been warned.
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Fuck it, We Ball
The day after I dropped the kids back off with their mom I went to a drop-in skate (a scrimmage, for those that aren’t wholly familiar with hockey) to see what I was made of on the ice against live competition.
I did this once in July and it was a train wreck. I was extremely winded, and didn’t even make it a whole hour before skating to the locker room, going home, and sleeping for ten hours. My goal was to make it at least an hour of the 1:15 session. When I showed up I ran into a bunch of old teammates and friendly faces that were happy to see me out there and giving it a shot. There were some less than stellar moments, but overall I managed to keep my feet under me against far more skilled players.
I knew at some point I’d be able to play again, but I didn’t expect it to be this soon; I made it to the hour mark thanks to some deep benches and short shifts. I burned through my water at remarkable speed but I expected that. Shifts at drop ins tend to be longer because there are no set lines, just a rotation from the bench, so I could take short (45 second) shifts and rest without guilt knowing some gomer was going to take a four minute shift without a second thought.
Fast forward two weeks.
Originally I’d killed and buried the idea of playing in the league at all this season: the cost outweighed the benefits; I could never make enough games to make it worth it. Then the fuckers did it. They released the October league schedule and of course, right on cue, it was actually a makable schedule for me with weeknight and late Sunday games. It took very little encouragement for my old team to start cheerleading me into playing another season, so the night before the first game I could make I signed up.
The primary rink my league plays games in is less than ten minutes from my house, so it’s not a major logistical movement to get there. I can leave 30 minutes before a game and still have time to get dressed and ready if I don’t waste any time. The locker rooms on one half of the building are comically small though and we were using that sheet of ice (there are two under one roof) so I decided to give myself some cushion and work my way into the room. Some of my old teammates, now on a different team, were playing and they waved at me as I walked down the corridor beside the glass to the rooms. It felt good to be back among friendly faces doing something I love to do.
My team was composed mostly of new faces this season. Some of the “OGs” were there and were very happy to see me on this side of the dirt, and some of the new people had only heard of me as “the cancer guy.” Either way, I was ecstatic to be there, and a little apprehensive about what the night would bring.
I’m a defenseman. If you’re not familiar with hockey, it’s basically what it sounds like. When my team is on the offense, I am supposed to prevent the opposition from breaking the puck out by camping on the blue line or being deeper than the deepest cherry-picking dickhead that is hanging out in the neutral zone looking for a cheap breakaway goal. This can involve a “footrace” of sorts where we find out who is faster and confident enough to stop once at terminal velocity, so as you might imagine I was a little worried about having too many footraces in the game from a stamina standpoint.
Fortunately the team we were playing was roughly our skill level, and the match was tilted evenly enough where I didn’t find myself in a sprint often enough to put a significant dent into my overall fatigue level in-game, and only once did I rotate myself to the end of the bench for extra rest (in league games we have pre-determined lines, I was in the first line of defensive pairing, a “starter” if you will).
I made a couple bonehead plays, and a couple of really good ones, but on the whole I was having a blast- even when I was doing really stupid shit on the ice like accidentally screening my goalie or leaving someone from the other team alone on the ‘back door’ (the back door is the side of the net that the goalie is not actively defending).
We ended up winning 5-3 after holding onto our lead, and we bumped fists with everyone on the ice before retiring to the locker room. I was given “defensive player of the game” despite the fact that I think I was -2 or -3 but hey I’ll take a sympathy ballot over nothing, and now I have this Mjolnir hammer that’s colored like a Rainier Beer can in my hockey bag until next week.
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Let’s go back to Part 1 where I mentioned… her… because she plays a pretty big part in this entry. We’ll call her Sarah for the purposes of this blog out of the interest of her privacy (and mine). Me and Sarah have known each other for a while, and were always strictly platonic friends. We’d started speaking more toward the end of the summer about the trials and tribulations of life, relationships, my recovery, and anything else you can think of.
I was in the process of trying to set her up with Thomas when, while trying to sell the idea to him over the course of the hunt, I’d realized that I had actually had strong feelings for her right in front of my face that I’d previously not acknowledged. I’d never thought of her that way before, but it was like the Titanic hitting an iceberg– slowly each compartment of my mind began to spill over with her likeness until I was drowning in turmoil over it.
Those of you who have fallen hard for someone who was previously a close friend, but you’d never seen as anything but, know that it hits you like a sledgehammer: the stress of the weight of the decision to act… or not. It’s like a stone on your chest that gets heavier with every passing moment.
For two weeks I’d wrestled with the consequences of telling her. I tried to talk myself out of it, I tried to convince myself that she’d never go for it. After all, I am largely still a broken person– medically speaking– and nobody my age wants to jump into the middle of this renovation project, right? Fatigue, brain fog, drymouth, dietary restrictions, random lightheadedness– I’m a mess! Oh, and if that wasn’t enough, the baby-mama drama is enough around these parts to push anyone away. Right…?
Well. Maybe not… at least, not as far as God is concerned. Or my psychologist at behavioral health, or my cognitive therapist…
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Woo Woo Shit: Revisited
So, for the first time publicly, I’m going to make a huge confession that is probably going to shock the people that have known me well for years: I am making an effort to get right with God. My recent posts have hinted at this a little bit, but I’d made a promise to myself before treatment that if I made it out from the other side of this thing that I was to “get correct with the lord” as it were.
Over the Labor Day holiday I finally decided to call the only person I’d trusted at the time to help me dip my toes into this world: my uncle. It was known to me he was getting more involved with the Catholic church recently and it seemed logical to bounce all this off of him and ask his thoughts on how I was to get started down this path. Religion was largely foreign to me– my parents never raised me in it despite being raised in Catholicism themselves; I had no foundation to build on.
After talking to him for about an hour, I was completely relieved: he did not try to recruit me, and even told me to make sure I approached this with care. He recommended a Bible podcast and answered all the questions he felt qualified to answer, and I was on my way.
Shortly thereafter I made contact with the Army chaplain that blessed my throat as mentioned early in this story, and we sat down for lunch one day to discuss how I should move forward. Like my uncle, he agreed that it wasn’t prudent to just whole-ass jump right into it. It would take lots of study and even then, there were still some big milestones I might not ever choose to pursue (within the Catholic faith).
Me and the chaplain discussed how to reconcile logic, reason, the scientific method, and faith– there was no way I’d be able to approach it any other way. I am a firm believer in science, always have been, always will be, but the gap between what science tries to explain and what is unknown is still too wide for me to just buy into the big bang. Why and how??? “Trust me bro” is basically what science says, which has at least equal footing with the idea that there is a divine spirit engineering this gong show.
Deciding to believe in God is how I’ve chosen to rationalize so much of this unknown. Without going too much into it in this entry, he has very much made himself known to me in very plain, very obvious ways lately. I struggle more and more with believing in coincidence, and the further I drift from that, the closer I drift toward the belief that maybe, just maybe, he has big plans for me. Or, at the very least, some sort of plan– to be determined, I’m sure my guardian angel will hold an IPR with the Saints sometime soon to iron out the next quarter of FY26.
More to follow on this development in a future entry, but that’s where my head is at right now (my atheist/agnostic friends would probably argue my head is firmly up my ass right now, which, ok, fine, but new year new me– you’ll get over it; I’m still gonna send you unhinged shit on Instagram).
Ironically, I have played hockey with a guy that looks just like this in goal.
The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
I’ve been thinking about this entry ever since the previous one. The thing about this blog is it’s semi-anonymous, meaning, those who know me know it exists. There are sure to be some strangers who stumble onto this as they barrel through the internet, but they are probably the minority. When it comes to speaking about cancer-related subjects, my self-censorship is low but never zero, but personal subjects get a more sanitized treatment.
Why? Three reasons:
When you’re a single dad, you have to have a healthy amount of paranoia about what parts of your life are public. What about my digital life can be weaponized against my visitation rights, me, or my wallet in a dispute with the ex? In many places, women are still the default residential parent and aren’t conditioned to have to look over their shoulders like many men are. But hey, that must be some more of that “privilege” I’ve heard so much about.
As I opened this blog with several months ago, I’m an active duty Army officer (and Public Affairs Officer to boot). There are no shortage of people out there that wish to do my career, or me, harm because of what I do for a living or because of opinions I express that don’t align with theirs. A couple years ago I made the choice to no longer participate in many online discussion forums for this reason, and have muted my online presence to a decently high degree to prevent such a witch-hunt.
You want to get something off your chest, but don’t want to discuss it further with anyone, so you avoid saying certain things to avoid that hassle of reliving these thoughts over text/phone/in-person.
Why do I bring this up?
It stunts me from treating this as a true unfiltered journal, and while there are a wealth of subjects I have a lot of nuanced thoughts on, at the end of the day most of them would only serve to harm me in some form or fashion- so we’re going to try and stick to the script here and keep this about the things on the title page of this blog.
Obviously this is the first time I’ve written anything in a while. Not for lack of interest- I have thoughts all the time that I think, “Oh, I should add that to the blog.” However, they get lost in the fog of fatigue and life as it happens around me, and they rarely make it in. A lot has happened, most of it positive in some way, but I am far from normal and my body isn’t shy of reminding me of that fact.
After an extended Father’s Day weekend with the kids they were back to their mother’s for the first half of summer break. I’m fortunate that I have the second half of summer with them this year specifically, given everything that’s transpired, but it doesn’t make it easier not having them around for so long. Now my contact is relegated to whenever their mother feels like answering the phone and acting like an adult that’s capable of communicating respectfully when she can’t, which has been challenging already.
I actually went to take them back to the exchange point after this last visit, despite only being able to drive part of the distance before my eyes started to act up from either the strain or some kind of mystery allergy. I’ve heard that chemo wipes out your allergies, but I am starting to think it’s just reddit bullshit from people who, like me, were shut in during allergy season and spared their normal seasonal allergies. Sneezing is just about the most painful thing in the world for someone like me, and I’ve had to try and hold in many to avoid the pain it causes in my throat.
A couple days after dropping the kids off my mom departed. I had gained enough medical clearance, and physical independence to do basic things for myself like nutrition, driving to appointments, and walking without any assistance. With the kids not needing to be picked up anymore until later in the summer, it was finally time for her to leave and return to her life in Florida where she and her husband are semi-retired. I was getting antsy to be back on my own prior to this, but I’m glad she hung on as long as she did; at times I’ve needed more help than I’m willing to admit.
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With my newfound independence I knew I had to redevelop routines long lost to the annals of time. I came up with a feeding routine that needed to accommodate my still very irritable throat with my caloric needs, and I mostly have. It started with just calorie shakes, oily and fluffy scrambled eggs, and ramen noodles but I’ve expanded the aperture of my diet slightly since starting that dietary regimen. Now I’m able to introduce finely shredded meats (think canned meats like tuna/salmon/chicken) as well as canned fruits like pear halves and peaches. All fruit products that have a lot of juice content, like canned fruits and apple sauce, still sting after a while because of the acidic nature of it, but it’s the only real way for me to get fiber and the vitamins that they offer in a way that doesn’t hammer my throat. I tried clam chowder for a while, but the potatoes just became too much. I’ve found I can make and eat runny instant mashed potatoes with generous amounts of gravy, but solid potatoes are very much a bridge too far.
I’ve gained five pounds for all this trouble and have seemed to hit a plateau. The nutritionist at the cancer center said one way over the hump would be to introduce exercise, but all I’m really cleared to do is go on walks for as long as I can tolerate. So I walk. I walk every morning, usually to the University of Puget Sound, a small college a little over a mile and a half from my house. I wake up, check my messages, and I walk. This route usually takes me about an hour. When I get home, I eat my eggs, do the dishes, and sit down to watch the morning news. Shortly after I try and do some sort of task or chore, if I don’t, it won’t get done until I’m done dozing off between breakfast and lunch. Speaking of, lunch is typically a pack or two of ramen and a can of fruit, and sometimes a boost calorie shake. Then back to vegging out, as now it’s the heat of the day here in the Pacific Northwest and going outside is hazardous to the skin on my neck without taking a bunch of precautions I just don’t feel like taking unless it’s necessary. That and it will increase my water intake, which is already over four liters per day due to my dry mouth and activity.
And let me tell you about fuckin water. There was a huge problem at the end of my treatment with not getting enough hydration, which is essential for the body to heal things like radiation burns inside your throat. I was doing my daily hydration appointments to get even a quarter of what I really needed, in fact, that was probably just keeping me alive at that point. It wasn’t until the feeding tube episode that I really began to turn my hydration around. Now that I’m drinking obscene amounts of water I am constantly on the other end of the equation, peeing multiple times an hour. Not little piddly streams either, these are grown man pees, and they happen all night long too. I wake up no fewer than three times per night to pee. I’m getting a taste of elderly life I think, and now I can understand why some of them are so goddamn angry all the time.
I also can’t go anywhere without water. It’s a literal showstopper to the point where I keep a case in my trunk not just for life/death emergencies like any other supply, but for when I rush out of the house without the only water bottle I have that fits in the cupholder of my car. I’ve become dependent on access to water like some people get chemically addicted to controlled substances. I can take morphine for days on end and have no withdrawals or cravings for it, but if I got more than 10 minutes without a sip of water it feels like I’m back in Iraq and the convoy just went black on water. (Note for civilians: “going black” means you’ve run out of some class of supply)
The author dying of thirst in Iraq circa 2006.
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So aside from being constantly tired, unable to gain any meaningful weight, always having to pee, being lightheaded when I stand up, and not being able to hear shit, I’m doing ok. My doctors are content-to-pleased with my progress and are keeping an eye on me regularly. I get my hearing aids next month, and I’m told they have bluetooth, which is exciting. Now when the kids are watching a movie on the tablet in the backseat I’ll have something other than road noise to keep me company. I’m sort of burying the lede on this whole update though: I got the feeding tube out.
After meeting with my oncologist in the middle of last week, I made a compelling case to finally get the tube out. It was absolutely priority number one for me going into that appointment, and I was keen on delivering that to myself. He put in the referral and later that day interventional radiation called me to schedule a removal for the next afternoon! I had no idea what it would entail or how I would feel during and immediately after, but I figured however it felt would be worth the cost of not having it in my body anymore. Nothing destroys your confidence like having a PEG tube hanging out of your abdomen. The weird bulge in the shirt, the discharge, the maintenance, all of it had to go. All and all it was a very smooth deal. The IR nurse had it out before I even knew what was going on! They said it would partially heal in 24-72 hours with a full heal taking about two weeks. So now I have a gunshot looking wound in my abdomen, but now I can roll around freely in my sleep and have a little more self-confidence. It’s not like it’s advisable for me to get laid right now, but I like having the possibility on the table. Tell your lady friends I’m back on the market. The clearance rack, but, still… the market.
However, the bad comes with the good, and I was told that the port had to stay until next year, after my one year PET scan. It wouldn’t limit me from doing anything that I want to get back to doing, but there is maintenance involved and wearing some backpacks can be uncomfortable if the straps are positioned wrong. It will be something I have to navigate or figure out workarounds for, but probably not a showstopper for when I start to resume the hobbies that bring me joy like hiking, hunting, and hockey.
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Nobody talks about the mental battle involved in all of this, at least, it’s not well-discussed. Granted, the physical impacts of every single step of this journey are known to a degree and shouldn’t be downplayed, but the mental part would be absolutely devastating if I hadn’t been through micro-doses of hell leading up to this whole scenario.
I’ve always been a bit of an independent spirit, content in my aloneness. Ever since I was young I was fine, or even preferred, playing alone at times and as I matured into an awkward teenager with poor social skills I didn’t accumulate a penchant for being in groups of peers all the time. Today this is called a “social battery” but mostly I just needed space to think. My psychologist said I’m a ‘thinker’ and I think he’s onto something. Now, I can adapt and survive to and with almost any social setting, but ever since I moved into my own place in late 2023 I have fiercely guarded my peace and independence within the limits of my ability to do so. Here’s where the dichotomy comes in: having cancer is a fundamentally lonely experience.
Yes, I was supported by my amazing mom throughout treatment and the early part of my recovery, and I had dozens of friends and family send care packages and check in on me in person and telephonically. My coworkers visited me during hospital appointments at the Army hospital, and a hodge podge of each member of a community I’m part of showed up at my bell ringing during my last radiation session. But, at the end of the day you go through this alone. Only other patients and survivors actually know what you’re going through. There’s no other way to experience this other than going through it. You can have empathy, understanding, and be supportive of someone going through this, but you can’t know the psychological toll it takes on them. (Note: I swear the next person that tries to relate to me with their story of losing their taste buds during COVID is going to get me arrested)
Now amplify this with two children under ten, a co-parent that does not always act logically or rationally, being a commissioned Army officer in the current domestic and geopolitical climate, relationship woes, and any other stressor you can imagine… and remember that while all this is going on you are a hostage in your own body and have harsh limitations on what is safe or prudent to do. My cortisol levels have probably been off the charts since December.
Why do I bring this up? If I act recklessly, I could return to my old self almost immediately, at least within the limits of my ability to do so. It would almost certainly result in a complication or setback, or possibly even a potentially fatal accident as I’d be effectively burning the candle at both ends. If I act on the guidance of my doctors and medical team, sure I’ll likely survive through the end of the first part of recovery, but the amount of joy I experience daily is cut down 95%. Let me expand below.
I played video games a lot as a kid and young man, but I started to grow out of it in my mid-20s and had fully grown out of it by the time I turned 30. Not counting deployments, I’d have spurts here and there where I’d go down the rabbit hole on a game, but by and large my dopamine rushes came from being present with my kids and spending time outdoors. I have played a lot of video games during this experience and in the last 3-4 weeks I can barely be bothered to look at the TV. When I made hockey a part of my life right as my marriage was beginning to end, it really took over my life in the best way. It’s sunny and nice out now, this is the time of year when I should be scouting every weekend and playing summer league hockey and getting circles skated around me at drop-ins. Instead, aside from taking my morning walks, I sit inside making up chores to do in between naps and meals. I’m so burned out on video games, the news cycle, and the same uninteresting movies/shows on streaming apps. I can’t take any more screen-based stimulation.
This whole mental state is undoubtedly exacerbated by the fact that I don’t have kids right now and haven’t since father’s day. I am not allowed to have pets, so a dog would’ve been a great solution, but this place I rent is too good for me to throw it away rashly for what I plan on being a temporary condition. Being a single father is not only all-consuming during visitation, but they are frequently on my mind on days and evenings I don’t have them. To add to this, their mother has been less cooperative with facilitating our video calls lately and it’s been wearing me out emotionally.
I have a great tribe of people here I’ve developed over the last couple years since my marriage ended. My ex was never comfortable around “my people” and often made excuses to not go out, not wanting to have someone watch the kids, or would generally just insist I go alone. This made building a community challenging as the dynamic was such that staying home was better than going to spend time with peers, because what would be happening on the other side of my phone ended up not being worth the stress.
That tribe, however, has moved on like the rest of the world while I’ve been treading water. I’m a bit of a social burden: nobody knows what I can eat, what I can do, and what I’m capable of. I don’t blame that mindset whatsoever, because in large part yes- I cannot do big sexy hiking trips, or enjoy a barbeque banquet, or spend a huge amount of time in the sun (without getting extraordinarily tired and having to pee every 15 minutes). I probably feel like this because the first person that wasn’t my mom or Thomas came by to see me this afternoon: Rena. She told me about her recent scan (if you’ll recall from earlier posts, she had cancer in her 20s and has to get semiannual PETs), the logistical headaches of managing the ladies hockey league, local politics, and some of the characters we both know. It was nice to just have an uninterrupted conversation with a fresh face. When she left I took a nap and then ate dinner, watched the news, and began to finish this entry that has taken me four different sit-downs to finish and weeks of thinking to put together.
This isn’t the end of this journey, and I will have a lot more to say over the next two months. This is, however, the end of this entry because I could keep at this all night at the rate at which my mind is moving.
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The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
Just as soon as my mom’s husband was here, he was gone back to Florida. He’d done everything he could for me here, and lifted my moms spirits no doubt but we couldn’t smash us three plus the occasional pair of kids in my 850 square foot cottage forever.
Every week is a new adventure in my life ever since I was very first seen about the lump on my neck, and I’d thought that would slow down with recovery and every day would start to blend together into more of a groundhog day where the only noticeable difference is I regain some function or capability, or at least a portion of it progressively. That’s still happening in a sense, but the world keeps spinning whether I’m trying to spin with it or not, and I don’t live in a bubble.
This was the first week I allowed the infusion clinic to keep my chest port accessed throughout the week, versus the usual procedure of getting it accessed and de-accessed daily. What this means is I let them keep the needle inside the port with a small tube hanging out, kept on and secured by some adhesive strips and squares. I kept it accessed Monday through Friday, since my hydration appointments are daily, and it was overall less painful for me and easier for the nurses at the infusion clinic. I took a shower with it on, which was a little nerve-inducing, but nothing went haywire.
For the uninitiated, having a port in your chest basically means I have a small plastic hose that runs from a vein near my heart to a type of, well, port that is just underneath your skin. Back in mid-February when I had it put in it was barely perceptible, at a glance, aside from the slight bruising and discoloration, and now that I’ve lost 35 pounds it protrudes fairly noticeably when I take my shirt off. The purpose of the port is to have an easy access point pre-drilled into your circulatory system for things like chemo, which takes hours of being hooked up to an IV, scheduled hydration, and hospitalization. Instead of slipping a line into your arm, they can take a special port needle and tap right into your system from your upper chest.
Image courtesy of the Cleveland Clinic, which, by the way, has an excellent public library of online health topics.
Like I said above, no two weeks are the same anymore, but I do find myself settling into a mental lull as I grind through this period of “recovery.” The damning thing is that I don’t even know if I’m in recovery from cancer, recovery from treatment, or both. I’m definitely in recovery from treatment, that much is obvious even with the painstakingly slow rate in which that’s being achieved, but I don’t know if I’m cancer free yet and that hangs over me like barely-perceptible anvil head clouds somewhere on the horizon. Is it there? Is it going to hit me? Will it swing away? Is it even there at all?
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My speech had really started to normalize during week four of recovery. I no longer really felt the need to hold back, keep my mouth artificially closed, or avoid certain tones. This was important for me to sound more like myself again, but maintaining conversations over a sustained period of time is difficult because of my dry mouth. It will take up to a year or longer for me to regain most of my salivary glad capabilities, which means I run out of steam quickly when having “long form” conversations, and I worry tremendously for what this means when I am able to begin exercising again. Water brings temporary relief, but I still have to self-regulate in this regard. Keeping my mouth shut, not exerting myself for a few minutes at a time, and trying to use medicated aids are the only real allies in that small battle in this larger war.
The idea that I’m “exerting myself” brings a grin to my face even as I type it. I have basically no muscle mass left. During week four the most I could do was walk from the car into the hospital and to whatever clinic I was heading to at the beginning, but by Sunday evening I was able to mow my entire front and back lawn. Now, this is basically just walking the same distance as I would be from parking lots into hospitals and clinics, but outdoors and pushing a small electric motor- no small feat when you consider where I was a month ago. The downside to doing an activity like this however, is I’m completely worthless the rest of the day. Anything other than “sit in the recliner and rest” exacts a massive toll. What was, pre-cancer, an embarrassment of riches when it came to stamina, is now a near-bankruptcy. My body lives paycheck to paycheck when it comes to energy levels. Any time I challenge it I have to pay in back ten times over.
Another wrinkle of this recovery period, however, is the inability to rest how I need. My ability to sleep has taken a hit. I can be incredibly tired, physically, mentally, emotionally, and even medications I’ve been taking that are known to help induce sleep do not even make a dent. About half the week, despite being completely exhausted, I was only able to get a few hours of restful sleep. This is not what progress looks like to me, but unless it continues I’ll chalk it up to a small bit of choppy water hitting the boat.
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You’ll notice that this blog is being cut loose on a Friday of what would be “week 5” of recovery. This is obviously part of a pattern where the entries are slipping further and further “off schedule” of zero to three days after the preceding week I’ve been trying to keep for the core group of family and friends that manage to work their way through this blog to stay updated on my health. I have a lot to say, believe me, about this process and the health and non-health related wrinkles during this adventure, but I don’t think I will be attempting to remain “on schedule” anymore. I will still be making regular entries, but they won’t be driven as a weekly update format, but more event or need/news based update. There’s apparently the ability to subscribe to updates via email, if you aren’t keen on checking my FB/IG story to see when these float in.
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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.
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.
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.
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.
The start of my third week of treatment was marked by optimism. My mouth had begun to stabilize somewhat, with dry mouth getting a little better, albeit with all of my taste having retreated almost completely. Now all that remained was hints of “sweet” otherwise everything was bland and tasteless. My swallowing function was still going strong with no detectable soreness, and my skin was still fighting the good fight.
I made it to proton treatment number ten, which means the bar chart on my dry erase calendar could have one more bar filled in and the visual representation of being roughly one third of the way treatment now existed in a physical space. This is an important psychological barrier for me to be able to see.
As the week went on I honestly felt good, like I was beating the odds of side effects. I began to have hope, something I rarely let myself possess, because hope is not a planning factor.
Thursday came and went and while I had the hint of a sore throat, it wasn’t anything I felt I needed to be concerned about. I meet with Dr. Panner and my assigned RadOnc nurse, Angel, every Thursday before or after proton treatment just to see how I’m fairing. Although I was in a very energetic mood and was unbothered by my tinge of sore throat, we agreed it was better safe than sorry to prescribe me some kind of oral numbing agent- a lidocaine gel similar to what a dentist might use or prescribe. This was possibly the last day of somewhat normal existence.
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Welcome to the suck.
Thursday night into Friday morning I slept fairly normal. Normal sleep for me now consists of waking up no fewer than three times to pee because of the extreme lengths I was going to to hydrate myself. When I woke up in the morning my entire world had changed though. The back of my mouth was sore on both sides by my molars and my little ting of sore throat had become a full blown sore throat. I felt right away as if the side effects had caught up and violently overtook me. I was warned that three weeks with no side effects was reserved for a small group of people and my time with that small group was now over.
Everything sucked. Eating, drinking, swallowing, talking. All unpleasant at best, painful and frustrating at worst. This is probably my new reality for the foreseeable future.
Despite this, I went through with taking the kids because that’s the only thing left if my life that brings me joy. My daughter had her final hockey game of the season and afterward was invited to an all-girls hockey event afterward. She is getting so much better at skating and playing and the feeling I get watching her is always brought down by the knowledge that one day she will have to stop. The Army will move me sometime next summer, and because she lives in the middle of nowhere with her mother, that’s the end of hockey for her unless some miracle happens and I become the full time custodial parent.
It was a beautiful weekend and we all went into my backyard after to pull weeds out of the planter boxes and preparing them to plant new seeds. I ran out of energy fairly quickly, however, and I told her we’d have to plant the seeds at her next visit. She was a little disappointed but she knows dad is sick and there are times where I just have to sit down for a while.
Unfortunately that visit won’t be for two weeks because I swapped next weekend for this one, being that I didn’t think it was wise for me to have the kids after chemo, given how the effects from the last round didn’t cease until the end of the weekend. I never don’t want to have them, but fortunately she is always asking me for swaps to accommodate her schedule so I am able to do the same hassle-free.
She only gets them one weekend per month, the first full weekend, which was part of the informal agreement we made to allow her to move out of state later codified in a temporary then final “parenting plan” in court. Knowing what I know now, I’d have never allowed her to move in the first place without very steep concessions, but we only get one play-through of this life and the lessons I learned during my divorce proceedings will never have to be repeated, but those thoughts are for a different entry.
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Tubular
Starting week four I knew that this was the end of me eating food like a normal person. I spent some time discussing how miserable of an experience I had having my “G Tube” (aka feeding tube) installed but now is when it was going to enter my life as a critical component of my well-being.
I made the decision to start tube feeding Sunday night, to commence Monday morning. Tylenol was taking the edge off the sores near my molars, but wasn’t lasting as long as I needed it to and swallowing two pills every six hours was testing my throat.
Come Monday morning I tried to drink a yogurt-based banana shake but I felt extreme discomfort that was akin to when I tried to eat an actual banana Friday morning; it was akin to suffocating. We decided then and there that banana-anything was a non-starter as it irritated my throat to no end in a way nothing else had. I was able to sip on a Chobani drink throughout the morning, but tube feeding was imminent. There was just no way I’d be able to get the calories I needed orally at this point.
After we returned from my 14th proton therapy treatment I sat in my chair with a catheter-tipped 50 ml syringe and a bottle of Nestle-branded unflavored liquid that measured 375 calories. Foolishly, I just pulled the plunger out of the syringe and dumped the liquid in to the 50ml mark. Why was this foolish you might ask? Like most milk-based drinks they need to be aggressively shaken to break up clumps in the bottom. On the fourth pour a couple big clumps blocked the tip and slowed the gravity feed down to trickle. I tried a warm rag at first, but that did nothing so I carefully tilted the syringe down several times (at least as much as I could without spilling) and that finally did the trick.
I was feeling bold and knew I was running a major caloric deficit so I went ahead and gave myself as second serving. It went down easier than the first and I started to solve the problem.
I’m a very active person by my age and peer group. Playing hockey up to four times a week, hiking distances of up to 18-19 miles per weekend day during the summer, lifting weights three times a week, and driving close to a thousand miles per week because of my custody and work obligations. When I was diagnosed I snuck in one morning of stick and puck (think of a public skate, but for hockey) with the boys and since then the most athletic thing I’ve done is walk on a beach with the kids or mowing my grass. The rest of the time I’m basically an active vegetable. I don’t wear any kind of fitness tracker or count calories because that’s never been a concern of mine with my self-control/awareness, vanity, and activity level. However it’s basically been a focal part of my life since I started this adventure. I got up to 204, and while those had slowly been coming off over the last three weeks of treatment, I was determined to maintain a healthy weight despite my treatment and all the stories I’d heard of people becoming emaciated from lack of intake.
So it becomes a math problem. The average American, who is probably overweight, eats like shit, and doesn’t exercise enough if we are being honest, needs 2,000-2,500 a day if food labels are to be believed. That means I need a minimum of 6 cartons of the Nestle tube food per day. I can “eat” two in one sitting comfortably, possibly more depending on how much I choose to experiment. I can feed every two hours if I take two at a time, or an hour on and and hour off if I split them up. What sucks though is the act of feeding itself in that it’s takes focus and arm stamina to hold the syringe upright.
Following the advice of Trevor, who you might remember from an earlier post as the other active duty Soldier I’d connected with that had a similar cancer and treatment plan, I pulled the trigger on an IV stand and 1000 ml bags to gravity feed myself unassisted. They weren’t cheap, but they are allegedly reusable. I’ll report back when I’ve had a chance to use them.
And that’s it for this entry. I am writing it as I receive 1000 ml of IV fluid and medications at the Army hospital while I prepare to receive my second round of Cisplatin chemotherapy today. I’ll see you on the other side.
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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.
Chemotherapy is in the top five weirdest enduring experiences I’ve ever lived through right up there with deployments, foreign travel and the entirety of 2016.
Everyone is familiar with the usual tropes of chemo: hair loss and nausea, but there are less discussed and less experienced versions of this facet of chemotherapy that I’ve experienced as direct effects or secondary/tertiary effects.
In my last post I put the blurb about Cisplatin, the chemo agent, from Wikipedia and it isn’t wrong. While hair loss hasn’t hit me… yet… the nausea I experienced last week was very strong and enduring. Fortunately, the medicines we have to combat nausea in the modern age are very good at what they do assuming you don’t miss one of your doses. With the help of my mother keeping me on a pill regimen, an electro-shock wristband from my uncle’s family, and intelligently managing my activity levels I remain relatively unaffected aside from the general feeling of nausea- no barfing from either end during the first full week following my infusion.
What did happen, however, was the amplification of my service-connected tinnitus and some high-end hearing loss. This was widely broadcasted by my doctors as a very likely side effect, but unfortunately there is no way to mitigate it. It’s very likely by the time I’m done with my third (and hopefully final) course of chemo at the end of April that I will need hearing aids. The upshot of this is that I’m told they have bluetooth now, so I won’t have to burden myself with using (read: remember to bring) earbuds anymore at the gym ever again.
In an effort to get in front of the unbearably short term effects of Cisplatin like nausea, and anticipating allergic reactions, you are given anti-nausea meds, steroids, and stool-softeners. The anti-nausea comes in a short course of one daily pill that takes you through the worst of it, but is supplemented by shorter-acting longer-term meds that are taken during intervals or as-needed. One side effect of these medicines that no one told me to expect was hiccups. Good lord the fucking hiccups. Hiccups are frustrating for a normal, healthy person, and absolutely maddening for someone undergoing cancer treatment. Dr. Farrell, my MedOnc, checked up on me the next day telephonically to see how I was doing and when I mentioned the hiccups I got an, “Oh, yeah, a lot of people experience that from the nausea meds.”
I am a lot of people.
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Week 2
By Sunday I was starting to feel better. Not 100%, but much better than “nauseated semi-vegetable.” The skin on the right side of my neck was starting to regularly peel, but nothing worse than someone in the last throes of sunburn recovery might experience. Otherwise, all systems were nominal.
Monday was when I began to experience something like a normal feeling. I woke up to a call that my proton radiation therapy was cancelled because the machine was undergoing maintenance. On the one hand, this was a relief because I didn’t have to endure a drive to and from north Seattle, but a bit of a letdown because it was one more day added onto the back end of my treatment.
Tuesday, now Tuesday I began to feel like a real person again. I woke up to an unseasonably nice day and decided that in lieu of a daily walk around the block I’d attempt at mowing my grass. If you’ve lived in the northwest, you’ll observe that once the fall rains come, many people just give up on maintaining their lawns until summer because of how hard waterlogged grass is to maintain. The end result is come spring, most yards have grass that comes up to your calves. Now my little electric 40v mower is a stud, but tall damp grass takes considerable effort and battery charge to tame. I mowed about a 12’x12’ square before I broke a bead of sweat, and decided I didn’t want to push my body’s luck. I went inside and started pounding water and racked out in my easy chair. The fatigue and electrolyte loss that chemo induces is absolutely real.
Half-mowed lawns are proof of life at my house now.
It was around this time my skin started to go haywire. My skin began to get tremendously oily and I started to have small breakouts on my face, scalp, and back. They weren’t painful, just unsightly and another blow to my already crippled self-confidence. Apparently this is a delayed side effect of the steroids I was on the previous week to get in front of potential allergic reactions, but they haven’t subsided much so I am beginning to think this is another fun chemo experience.
The ex asked me if I wanted to take on the kids mid-week to make up for the previous lost weekend, as they were on spring break, and I jumped at the opportunity (that and it saves us on childcare costs as she wasn’t taking off work). My mother had her reservations, but ultimately supported me in this endeavor. I arranged a ride from one of my work mentors to radiation on Wednesday and she took my car to go pick them up.
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Quality Time
Having the kids around again took a tremendous amount of stress off of my shoulders. I pride myself on being as active in their lives as I am allowed to be, and being a rock of normalcy for them to lean on during the uncertainty of the last couple years. That said, they are still kids and they are exhausted even when I’m a healthy man. With my mom on hand, I went from doing zone parenting to man parenting, however, and was able to spend quality time one-on-one with them as best I could.
By Thursday, I felt recovered enough to drive myself to treatment, so I took my seven year old daughter with me and for her it was just another adventure with dad. The cancer center front desk gave her a Nintendo Switch to play with and she was happy as a clam playing that while I received my treatment. The next day she wanted to work on one of their puzzles and play Uno. I’d imagine for her these excursions were just more daddy-daughter time where she got to do fun activities in new places, and if that’s what she pulls out of this experience then I can live with that.
The downside of this time was I finally lost all remaining taste buds and my dry mouth has started to ramp up. It hit me sharply on Wednesday, following the loss of my taste buds, and has not remained consistent, which I’ve taken as a good thing. Through nutrition, hydration, and medical maintenance, I am doing remarkably well in tolerating the radiation so far.
I returned to full on COVID-rules mode on Saturday, my first excursion into a place that is high-threat to immune systems even in good times: the hockey rink. My daughter has her games on most Saturdays and the undersized, under-sanitized, and overcrowded locker rooms full of kids are not friendly for someone with a degraded immune response. For her though, I was going to roll the dice. Hockey is the only part of her old life that’s remained consistent and I will protect it at a high cost. I masked up, put the hand sanitizer in my pocket, and got there early enough to get into the far corner of the locker room before it filled up with people.
After we returned the weather was fantastic so I set out to do more of the lawn. The 12×12 was already starting to look shaggy so I went back over it, and managed to mow the rest on as much as a full charge would allow me. Normally a full charge will last me the entire front and back yard, but with so tall and still slightly damp grass it netted me about 80% of the backyard before I transitioned to the weed wacker to finish the back. The front will have to wait until I can work up the energy on another cooperative weather day.
I made somewhat of an error in judgement on Sunday, however. In an effort to give my mom a break from driving, I convinced her I was well enough to execute the return trip with the kids on my own. The first hour went fine, but after my eyes started to bother me and my nose began to drain in what I can only assume is spring allergies, unless this is another delayed chemo response. Despite sucking down a ton of water, which is basically an everyday occurrence for me as part of the chemo management, I was miserable and tired.
Miserable and tired should have been the title for last week’s entry.
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The views and opinions presented herein are those of the author and do not necessarily represent the views of the Department of Defense or the U.S. Army.
(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.
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.
CPT Cancer 
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