CPT Cancer

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

Tag: hospital

  • Remission 3

    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.

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

    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.

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

    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.

  • Remission 1

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

    NED

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    The Long Game

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

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

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

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

  • Recovery 6

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

    -Jax Teller, Sons of Anarchy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    I. Was. Furious.

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

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

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

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

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

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

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

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

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

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

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

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

  • Recovery Week 4

    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.

  • Recovery Week 3

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

  • Recovery Week 2

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

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

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    Feeding Frenzy

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

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

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

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

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    Family Feud

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

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

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

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

  • Recovery Week 1

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

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

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

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

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    Hydration

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

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

    Average IV infusion experience at an Army hospital.

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

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

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

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

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

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    The Resurrection

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

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

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

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    Mother’s Day

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

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

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

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

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

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

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

  • The Final Week of Treatment

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

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

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

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

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

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    They Showed Up

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

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

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

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

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

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

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

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    Slow Burn

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

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

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

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

    Things did not get better.

    They got much, much worse.

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

  • Treatment Part 6

    Pain Management

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

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

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

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

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

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

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

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

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

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

  • Treatment Part 5

    Stephen Hawking Vibes

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

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

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

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

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

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

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

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    All the things left unsaid

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

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

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

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

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

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    The end is in sight

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

    Here’s what I know: 

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

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    Robot Dad

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

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

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

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