CPT Cancer

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

  • The Final Week of Treatment

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

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

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

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

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

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    They Showed Up

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

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

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

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

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

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

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

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    Slow Burn

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

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

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

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

    Things did not get better.

    They got much, much worse.

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

  • Treatment Part 6

    Pain Management

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

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

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

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

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

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

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

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

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

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

  • Treatment Part 5

    Stephen Hawking Vibes

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

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

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

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

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

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

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

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    All the things left unsaid

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

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

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

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

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

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    The end is in sight

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

    Here’s what I know: 

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

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    Robot Dad

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

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

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

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

  • Treatment Part 4

    Cut Down

    When this whole thing kicked off I had these daydreams about how I was going to approach treatment and recovery methodically, with military discipline and the attitude of a winner. I wasn’t going to allow myself to get down or despair, but it didn’t fully register with me until this week that that mindset only works in specific circumstances and specific treatments. My type of cancer isn’t something you “fight” or “beat”: it’s something you survive. I am not fighting for my life. I’m not taking aggressive measures to defeat cancer like it were some sort of adversary: I am merely trying to endure and survive the experience. The fight comes after… if I manage to hold on long enough to be “in recovery” in the first place.

    Immediately following my second round of chemo I felt ok. I mean, as ok as I could feel. No headache or caffeine withdrawal from last time meant that this time would be slightly easier, right? WRONG. Kyle, you stupid bitch, fucking wrong.

    I was devastated. No energy, no stamina, extreme nausea, no appetite, no will to live. For the first three days after chemo I was maxing out at two cartons of formula per day, which is roughly 750 calories. I’d dropped 8 pounds in a week come time for my weekly visit with Dr. Panner. If this was a fight, I was purely on the defensive, I was merely surviving the onslaught.

    The only bright spot in the entire week was the pair of sores that had developed by my molars had healed somehow, either from the pre-infusion steroids or from mouthwash maintenance, so I could speak somewhat normally. That was it. That was the bright spot.

    My nausea finally manifested itself into vomiting during treatment week four. First with some puking into a puke bag in the car on the way to proton therapy, then once in the evening in between periods of a hockey game I had some emotional investment in, and then every evening when I brushed my teeth. Aside from brushing with a pasteless brush and swearing off of all mouth rinses, I’m at a total loss on how to fix this. I cannot not keep my mouth in good order: it’s medically necessary to preserve my teeth and my general health since the radiation is nuking my ability to keep a balanced environment. The one positive takeaway from not being able to swallow much, besides small sips of water, is that I’m not introducing a lot of foreign bacteria into my mouth.

    This weekend I’d traded away my visitation with the kids to the ex in exchange for the previous weekend. I knew after chemo number one that having the kids the weekend after chemo was a non-starter, but didn’t know how right I would be. Now, this isn’t something I’m happy about having to do and I miss having them but it was a necessary sacrifice. I did manage to facetime with them which helped a little, despite my degraded physical and mental state, so I’ll take the small wins in lieu of having any big ones on that front for the foreseeable future.

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    The Circle

    When big ugly traumatic things happen to you, you find out who your people are. You find out who the people that actually show up for you are, the people that mean what they say and are sincere. During my divorce this became evident and after my cancer diagnosis it was almost overwhelming. I received a major outpouring of support in material goods, supplies, and money to help kick this journey off and it hasn’t fallen off.

    I made a big deal about being able to mow my grass a couple entries ago. This benign chore was something I was proud to still be able to do because it meant I was functioning like a normal person. I knew under my new tube–fed reality that that portion of normalcy was being hung up for the time being. Fortunately I was able to call on Thomas to help me out.

    Me and Thomas go way back to when we were both over-caffeinated E-4s in Hawaii and Iraq, addicted to blowing money on women, things that went fast, and booze… as a normal 20 year old soldier does pretty much everywhere in the U.S. Army since 1775. After we moved on we keep in touch through social media and eventually reconnected when I was reassigned to Washington, where he had gotten out of the Army and begun a career. Thomas has been one of the cornerstones of my post-divorce life. He was there for me during all the tough times and is still there for me now. There’s nothing I’ll be able to do to ever fully repay him for being one of the pillars in my support network during two massive crisis’ in my life.

    Continental soldier and his stripper girlfriend in a Ford Mustang (circa 1777) – Craiyon AI

    Another part of my circle came in to provide me some support this past weekend but from way out of town and way in my past, Ang. Me and Ang go back to freshman year of high school in rural west Michigan, where she was a sophomore cheerleader when I was on the freshman football team. We ran in some of the same friend circles because of these overlapping sports and usually had at least one class together- we even went to prom together one year before she graduated and I ran off to enlist in the Army. We’ve always stayed in touch and she always managed to send me a Christmas card of her and her daughter (who is now in college… Jesus… where did the time go?) 

    For a little while those two had been talking about coming out to see Seattle and visit with me and right before I announced to people I had cancer she told me she’d booked a weekend trip up this way. Of course I had to tell her what was going to be going on right in the middle of the trip and how that part of it was moot, but decided we’d play it by ear. As the day got closer I knew traveling to meet anywhere was going to be a non-starter between my health and wanting to stay vigilant at avoiding public places.

    Fortunately we were able to connect before her flight out Sunday. Given she’d been traveling and in very public places all weekend we went “full COVID protocol” and my mother masked her and sat her down in the opposite end of my living room from me. Despite my increased difficulties speaking we were able to have a fun reunion for a couple hours, and when I was too busy fighting off some sort of nausea spell my mom would pick up the conversational slack. I know it wasn’t my fault, but I did feel bad regardless for being in such a worthless state when she’s one of the few non-family people who have ever come to see me when I’ve been living elsewhere in the Army. Like I said, things like this help you find out who your people are.

    Rena re-enters our story right about this time as well. Yesterday she came over to drop off flowers for my mom (who also got a bunch from Ang) and a get-well card from my hockey team. Of anyone in my circle, she is one of the few that have any idea what I’m enduring right now. She checks on me, and understands that I just don’t want to talk about it most of the time now in a way many people do not. Anyone going through this needs a Rena-esque figure to remind them that everything they are feeling is rational and that your aren’t going fucking crazy.

    This is entering a phase that mirrors the low point in a deployment, psychologically. Every day is Groundhog’s Day where the pattern remains the same but there is no measurable progress. Everyone I know is moving right along with their lives while I mark time. I don’t leave the house other than to go to a medical appointment, I am rarely out of my bed, recliner, or passenger seat other than to move between them or perform some kind of hygiene-related activity. I have difficulty speaking so passing the time with conversations on the phone is a non-starter. I am truly just existing on this plain of reality until I, ostensibly, start recovery phase. After proton treatment this afternoon I have 13 more to go, and one chemo session, plus surviving the two weeks of residual effects of radiation and chemo, and then hopefully a scan or pathology report that says no cancer is detected. Then the long road to recovery begins, whatever that looks like.

    There isn’t a lot of upside in my life right now, and I know that this won’t, hopefully, won’t be forever, but it’s hard to see the end when you’re in the middle of anything.

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

  • Treatment 3: So It Begins

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

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

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

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

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    Welcome to the suck.

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

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

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

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

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

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

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    Tubular

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

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

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

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

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

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

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

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

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

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

  • Treatment Part 2

    Everyday an Adventure

    Chemotherapy is in the top five weirdest enduring experiences I’ve ever lived through right up there with deployments, foreign travel and the entirety of 2016.

    Everyone is familiar with the usual tropes of chemo: hair loss and nausea, but there are less discussed and less experienced versions of this facet of chemotherapy that I’ve experienced as direct effects or secondary/tertiary effects.

    In my last post I put the blurb about Cisplatin, the chemo agent, from Wikipedia and it isn’t wrong. While hair loss hasn’t hit me… yet… the nausea I experienced last week was very strong and enduring. Fortunately, the medicines we have to combat nausea in the modern age are very good at what they do assuming you don’t miss one of your doses. With the help of my mother keeping me on a pill regimen, an electro-shock wristband from my uncle’s family, and intelligently managing my activity levels I remain relatively unaffected aside from the general feeling of nausea- no barfing from either end during the first full week following my infusion.

    What did happen, however, was the amplification of my service-connected tinnitus and some high-end hearing loss. This was widely broadcasted by my doctors as a very likely side effect, but unfortunately there is no way to mitigate it. It’s very likely by the time I’m done with my third (and hopefully final) course of chemo at the end of April that I will need hearing aids. The upshot of this is that I’m told they have bluetooth now, so I won’t have to burden myself with using (read: remember to bring) earbuds anymore at the gym ever again.

    In an effort to get in front of the unbearably short term effects of Cisplatin like nausea, and anticipating allergic reactions, you are given anti-nausea meds, steroids, and stool-softeners. The anti-nausea comes in a short course of one daily pill that takes you through the worst of it, but is supplemented by shorter-acting longer-term meds that are taken during intervals or as-needed. One side effect of these medicines that no one told me to expect was hiccups. Good lord the fucking hiccups. Hiccups are frustrating for a normal, healthy person, and absolutely maddening for someone undergoing cancer treatment. Dr. Farrell, my MedOnc, checked up on me the next day telephonically to see how I was doing and when I mentioned the hiccups I got an, “Oh, yeah, a lot of people experience that from the nausea meds.”

    I am a lot of people.

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

    Week 2

    By Sunday I was starting to feel better. Not 100%, but much better than “nauseated semi-vegetable.” The skin on the right side of my neck was starting to regularly peel, but nothing worse than someone in the last throes of sunburn recovery might experience. Otherwise, all systems were nominal.

    Monday was when I began to experience something like a normal feeling. I woke up to a call that my proton radiation therapy was cancelled because the machine was undergoing maintenance. On the one hand, this was a relief because I didn’t have to endure a drive to and from north Seattle, but a bit of a letdown because it was one more day added onto the back end of my treatment.

    Tuesday, now Tuesday I began to feel like a real person again. I woke up to an unseasonably nice day and decided that in lieu of a daily walk around the block I’d attempt at mowing my grass. If you’ve lived in the northwest, you’ll observe that once the fall rains come, many people just give up on maintaining their lawns until summer because of how hard waterlogged grass is to maintain. The end result is come spring, most yards have grass that comes up to your calves. Now my little electric 40v mower is a stud, but tall damp grass takes considerable effort and battery charge to tame. I mowed about a 12’x12’ square before I broke a bead of sweat, and decided I didn’t want to push my body’s luck. I went inside and started pounding water and racked out in my easy chair. The fatigue and electrolyte loss that chemo induces is absolutely real.

    Half-mowed lawns are proof of life at my house now.

    It was around this time my skin started to go haywire. My skin began to get tremendously oily and I started to have small breakouts on my face, scalp, and back. They weren’t painful, just unsightly and another blow to my already crippled self-confidence. Apparently this is a delayed side effect of the steroids I was on the previous week to get in front of potential allergic reactions, but they haven’t subsided much so I am beginning to think this is another fun chemo experience.

    The ex asked me if I wanted to take on the kids mid-week to make up for the previous lost weekend, as they were on spring break, and I jumped at the opportunity (that and it saves us on childcare costs as she wasn’t taking off work). My mother had her reservations, but ultimately supported me in this endeavor. I arranged a ride from one of my work mentors to radiation on Wednesday and she took my car to go pick them up.

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

    Quality Time

    Having the kids around again took a tremendous amount of stress off of my shoulders. I pride myself on being as active in their lives as I am allowed to be, and being a rock of normalcy for them to lean on during the uncertainty of the last couple years. That said, they are still kids and they are exhausted even when I’m a healthy man. With my mom on hand, I went from doing zone parenting to man parenting, however, and was able to spend quality time one-on-one with them as best I could.

    By Thursday, I felt recovered enough to drive myself to treatment, so I took my seven year old daughter with me and for her it was just another adventure with dad. The cancer center front desk gave her a Nintendo Switch to play with and she was happy as a clam playing that while I received my treatment. The next day she wanted to work on one of their puzzles and play Uno. I’d imagine for her these excursions were just more daddy-daughter time where she got to do fun activities in new places, and if that’s what she pulls out of this experience then I can live with that.

    The downside of this time was I finally lost all remaining taste buds and my dry mouth has started to ramp up. It hit me sharply on Wednesday, following the loss of my taste buds, and has not remained consistent, which I’ve taken as a good thing. Through nutrition, hydration, and medical maintenance, I am doing remarkably well in tolerating the radiation so far.

    I returned to full on COVID-rules mode on Saturday, my first excursion into a place that is high-threat to immune systems even in good times: the hockey rink. My daughter has her games on most Saturdays and the undersized, under-sanitized, and overcrowded locker rooms full of kids are not friendly for someone with a degraded immune response. For her though, I was going to roll the dice. Hockey is the only part of her old life that’s remained consistent and I will protect it at a high cost. I masked up, put the hand sanitizer in my pocket, and got there early enough to get into the far corner of the locker room before it filled up with people.

    After we returned the weather was fantastic so I set out to do more of the lawn. The 12×12 was already starting to look shaggy so I went back over it, and managed to mow the rest on as much as a full charge would allow me. Normally a full charge will last me the entire front and back yard, but with so tall and still slightly damp grass it netted me about 80% of the backyard before I transitioned to the weed wacker to finish the back. The front will have to wait until I can work up the energy on another cooperative weather day.

    I made somewhat of an error in judgement on Sunday, however. In an effort to give my mom a break from driving, I convinced her I was well enough to execute the return trip with the kids on my own. The first hour went fine, but after my eyes started to bother me and my nose began to drain in what I can only assume is spring allergies, unless this is another delayed chemo response. Despite sucking down a ton of water, which is basically an everyday occurrence for me as part of the chemo management, I was miserable and tired.

    Miserable and tired should have been the title for last week’s entry.

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

  • Treatment Part 1: Week One

    (Author’s Note: I am typing this under the influence of chemotherapy, please be gentle on spelling/grammar/formatting errors)

    Hard Conversations

    I finally had the conversation with my daughter. I had no idea what to expect, but after speaking with a social worker and her teacher beforehand I went in and felt like I was prepared for most outcomes.

    She’s been through a lot in the last couple years. Her parents getting divorced, moving five hours away, and the ups and downs of the men her mother brings into her life (she has never met any of the women I’ve dated, let alone even had the idea I was dating anyone, for perspective). I knew this could be another tough pill for her to swallow.

    I kept looking for opportunities for us to tell her together, but window after window kept closing and I knew I was finally out of time- I had to tell her myself.  My mother had returned from Florida and was able to occupy my son so I could have the difficult conversation relatively uninterrupted. 

    She took it very well, partially because I don’t think she understands the gravity of “cancer” but she understood that it is serious and that the medicine they have to give me will make me sick, too sick to visit sometimes, and that her getting sick would also mean she couldn’t see me because I could get really sick from her. “Sick” and “medicine” were baseline terms that I used to explain just about the entire situation. There were a few misty eye moments but nothing she didn’t choke back on her own. Overall, it was a successful conversation about a difficult subject. Thank goodness for small wins.

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    Day Zero

    Monday was spent gathering last minute supplies, doing my pre-chemo lab draw, and knocking out other small tasks that needed to happen prior to my treatment.

    The military hospital is one of many teaching hospitals in the Army’s medical arsenal, and my phlebotomist was an AIT (military trade school) student being overseen by a Sergeant. I have a strong sympathetic response and I had a feeling I was going to be out of this young soldier’s depth. I was correct. 

    I have, by all accounts, great veins. I’ve never had someone “miss” the way this young soldier did. After one failed stick I was out of patience, because mentally this was not the day for this adventure for me, and I looked at the Sergeant and said, “OK, she’s done, you’re up.” and got my draw done promptly.  Normally I’m a good to decent patient for students, but today was not that day. I wasn’t spending my last day of freedom getting my arms mangled by Private Pincushion.

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

    Day One: Chemo 1 & Proton 1

    I woke up, loaded my cooler (I brought cooling mittens, booties, and a beanie with gel packs in them because I’d been told it’s one way to fight neuropathy and hair loss), and packed up all my things. We drove to the Army hospital and parked in our designated spot, reserved for infusion patients, and began the long walk toward the end of the first part of my life. I knew, and know, this is one of the watershed moments that I will use to demarcate my life in the future.

    After spending some time in the waiting area, I was brought back, the chemo port in my chest was accessed with a needle, and I was taken to my chair. They are oversized power recliners with hospital trays nearby. They gave me a cup full of pills and began running a liter of potassium chloride into my body through my port- apparently this chemo agent is hard on the electrolyte count. As soon as I exhausted that bag they got me started on my 1000ml (100mg) of Cisplatin chemotherapy the clock was on. I began diligently putting on, taking off, and reapplying my cold packs in between windows of time watching 1917 on my iPad.

    I received the highest dose of Cisplatin they can give a person due to my age and fitness level, and I sat there and watched four other patients come and go in the time it took me to get my dose, ostensibly older and only getting weekly doses versus my three-week dose.

    “Cisplatin is a chemical compound with formula cis-[Pt(NH3)2Cl2]. It is a coordination complex of platinum that is used as a chemotherapy medication used to treat a number of cancers.[3] These include testicular cancer, ovarian cancer, cervical cancer, bladder cancer, head and neck cancer, esophageal cancer, lung cancer, mesothelioma, brain tumors and neuroblastoma. It is given by injection into a vein.

    Common side effects include bone marrow suppression, hearing problems including severe hearing loss, kidney damage, and vomiting. Other serious side effects include numbness, trouble walking, allergic reactions, electrolyte problems, and heart disease. Use during pregnancy can cause harm to the developing fetus. Cisplatin is in the platinum-based antineoplastic family of medications. It works in part by binding to DNA and inhibiting its replication.

    Cisplatin was first reported in 1845 and licensed for medical use in 1978 and 1979. It is on the World Health Organization’s List of Essential Medicines“     -Wikipedia

    One thing they tell you to cut out when you start chemo is coffee, because caffeine dehydrates you, and chemo doesn’t need any assistance in dehydrating you. What they fail to mention however, is that you should wean yourself off of it and not just stop drinking fucking coffee on day one. I started to develop a significant caffeine withdrawal headache before half my dose was complete, which turned an otherwise benign experience so far into an uncomfortable one.

    Fortunately, the only overarching discomfort I had was the headache and the constant need to pee from three liters of collective fluid being put into my veins over the last five hours (the treatment is bookended by another liter of potassium chloride).

    Going home was relatively uneventful, as was the next couple hours. The proton therapy center had scheduled us in concert with the Army hospital to ensure we could be seen in the evening with enough cushion to arrive after chemo.

    We arrived at the proton center and I was told the first day is typically one of the longer ones, as they have to take an x-ray to make sure my mask is still aligned correctly, and to get the permission to go-ahead with treatment that x-ray image would need to be approved by a doctor. Fortunately I was feeling ok still and withstood the additional delays well enough.

    On the drive home I crashed right out in the passenger seat. Without fail, each day I pass out for a period of time on the drive back. Getting radiation is like spending a whole day out in the sun- it just sucks the energy right out of your body.

    The next three days were generally uninterrupted by the underarching feelings of nausea and discomfort. Usually the morning, right when waking up, is the best I feel all day. The longer I lie awake in bed, the worse I begin to feel. My body only tolerates lying down for sleeping, otherwise I need to be seated or in a reclined position in order to not feel like total shit most of the time.

    The saddest news I got this week came on, today, Friday, when my ex texted me to tell me our daughter was having flu-like symptoms. Seeing my kids was the one event I was looking forward to this entire week, and I knew that was about to be taken away from me for my own well-being. Talk about a gut punch.

    In fact, I think I’ll wrap it up there for now, one shouldn’t be emotional and blog.

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

  • Prologue Part 12: Intermission

    The Hunger Games

    The time between my last appointment (the behavioral health referral mentioned in the last post) and today was marked by various degrees of normalcy, and with it, some renewed mental energy.

    I was starting to endure a significant amount of stress, at least internally. Stress is really bad for you if you have cancer. Not only is there some research that suggests that stress produces hormones that aid tumor growth, but in me it manifests itself as a lack of appetite; this is a problem. For about a month now I’ve been trying to “bulk up” in anticipation of significant weight loss as my body responds to radiation and chemo.

    Bulking up with fat is a massive chore for me. I’ve been walking around at the same weight for at least 15 years, and I have a high metabolism that drives that homeostasis. I’m very active: I routinely lift weights, I play hockey a couple times a week, sometimes more, and in the summer and fall I spend much of my child-free time in the backcountry scouting or hunting. Three weeks into this attempt to eat …and eat… I’d plateaued at 15 pounds gained. I’d ceased all unneeded physical activity, began eating calorie dense foods, shakes, eating between eating, and anything else that made sense.

    15 pounds is all I could manage in becoming the most unhealthy version of myself. Frustration of this lack of weight gain was adding to my stress levels, which kicked off the negative feedback loop mentioned above. I was stressed because I wasn’t hungry, and I wasn’t hungry because I was stressed. To add to the stress from me trying to play Hungry Hungry Hippo-man, my neck tumor started to get weird.

    My brand of cancer started in my throat, at the base of my tongue, and spread to the lymph nodes on the right side of my neck as previously established in this blog, but my neck was really starting to get uncomfortably large by mid-February.  As more fluid and necrotic tissue built up, it began exerting pressure on my ear, jaw, and every other structure around it. This was both uncomfortable and alarming as the time ticked away between biopsy and treatment.

    Then, for no specific reason I can identify, my neck lump began to rapidly deflate. It was almost perceptible: I was sitting in my new easy chair and noticed it start to feel. This is significant because other than pressure, it doesn’t have a sensation of any kind, so all sorts of thoughts began to race through my head. “Oh god, is it spreading somewhere else? Is that how it works?” Fortunately, I’m mildly retarded and this was just the ignorance speaking, as what is more likely (according to the internet, my ENT nurse never called me back when I left a message about it, so I assume it wasn’t life threatening) is that my body was flushing out the necrotic cells and fluid. However, because I didn’t know this at the time, I took it as a harbinger of my imminent doom. Enter more stress.

    While I’m talking about being in tune with your body, let me just take a moment to give a shout out to women writ large: In my experience, women are always “listening to their body” and trying to apply self care for every little odd physical sensation, to include communicating it externally. This is not a common phenomenon for most men. We ignore our bodies entirely, accept pain and physical sensation as “welp, this is my life now” or “I guess I’m dying now, better clear the browser history lol.” Having a malignant tumor makes you, as I’ve heard Rena say, “a hostage in your own body” and not only are you hyper aware of your body, but every single little sensation triggers the, “oh God, this is the end, isn’t it?” I have no idea how women live like this. Ignorance is bliss.

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

    Be Hard to Kill

    I had a great weekend with the kids, all things considered, and we went to a local park on Puget Sound that’s known to host marine mammals at certain points of the year. I’ve heard that Puget Sound is experiencing an unsustainable boom in Harbor Seals at the moment, which is devastating the local salmon population and drawing in more Orca pods. Despite the ecological strife, they are kind of funny to watch, and we did for a time after a long walk along the coast to get to where they were hanging out.

    This was the longest sustained amount of physical activity since my last skate on 10 February, and my body let me know it. Fortunately my son, who generally likes to be carried on my shoulders, was fine on his own most of the time so it wasn’t unnecessarily taxing, but between some kind of bad allergy attack I was having and the walk itself down the beach I was totally exhausted. I had to get them back home so I could relax and recover.

    I was probably around my lowest point, mentally, of this interregnum between the flurry of initial activity, and the beginning of my treatment. Sunday evenings are usually tough days for me. I get to come back to an empty home, sometimes with toys still strewn about, and pick up the pieces of my weekend life. I wasn’t eating like I should have been, I was sleep deprived, stressed, and just not in an ideal place mentally. I needed to make a course correction fast.

    Monday I decided to put on my uniform and go into the office to try and feel some sense of normalcy, and it might have been the very thing that gave me some sense of renewed purpose.  At some point in the day I remember sitting in my car and just saying to myself, “be hard to kill.”  It was some saying I saw once on a moto-tshirt God knows where and who knows how long ago. The idea behind the saying is that you make yourself as strong and as capable as possible so that you become too difficult to attack. For whatever reason that morning, I decided that saying also applied to my current situation. I had to become hard to kill. 

    This could have been my million dollar idea but the bro-vet industrial complex beat me to it.

    Just like that my appetite came back, I began checking off a bunch of things on my “to do” list I’d been putting off, and even got some minor tasks done at work. I even started to do something I’d been outsourcing to Addison previously, which was browsing Reddit for answers, and I started learning more about those like me- those who had had this condition, this treatment plan, and were in the middle of it or had survived it. It’s honestly something I should have taken responsibility for sooner, but I’m too stubborn for my own good sometimes.

    This culminated in me (metaphorically) grabbing my nuts and going into dental to get a consultation with a dentist about my upcoming radiation and procuring the prescription dental items I will be using for the rest of my life. I walked in and was politely persistent that I needed to have a consultation with any dentist that had white space on the books. Fortunately they drummed up a guy that had some experience with oncology patients and he not only hooked me up with the prescriptions I needed, but talked me through what to look out for during and after treatment from a dental perspective. He was altogether much more competent than the guy I got my pre-radiation exam from and I felt like my preparations, medically, were just about complete.

    Now if the proton therapy clinic would just call me to tell me what time I’m supposed to show up on the 17th…

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

  • Prologue Part 11: The Waiting Game

    Forks in the Road

    A few days after I’d been seen at the university hospital I was scheduled to return to a different hospital campus in that same system a few exits further north, meaning in good traffic my daily drive would be at least an hour there and back.  This is a long way to drive for medical treatment by any standard, but even more punishing considering that I live in the largest metro area in the upper left corner of the country. Most days I-5 is unforgiving at best; in the Puget Sound metro area this day was no different.

    This is as painful as it looks.

    At this point I was used to pulling up to parking meters where I’d have to take a ticket and remember to have the medical office validate it on my way out for large garages or sprawling lots at some medical mall, and this day was no different. I took my ticket, and pulled up to the building that had “PROTON CENTER” in giant letters on the outside.  I was told that these buildings are actually built around the proton radiation machines due to their size. Big if true.

    Walking in through the front door revealed the stark difference between a general hospital and a cancer center immediately. Huge cathedral ceilings, couches in a giant waiting area that had a library, a snack bar, wifi, and two receptionists and their assistants. This was like comparing my local county rink to an NHL practice facility.

    I was greeted, a badge made for me, my parking validated, and given some paperwork to complete. I didn’t even have enough time to finish the paperwork before being called back to the “NASA” room where I was to see the first in a line of people that would be involved in my care. It’s called that because this type of therapy is most commonly given to pediatric patients and they’ve teamed with NASA to create interactive experiences to explain to the kids what is going to happen there. I was lucky to get a Star Wars band-aid at the doctor when I was a kid.

    First up was the “Patient Navigator” which is basically a social worker of sorts. I was given a lot of information in folders about my doctor, the treatment, the care team, facility, and additional information on nutrition, side effects, and lodging for the area.

    After that me and my mom were taken to a more standard clinical room where I was asked by the LPN to review my medications they were tracking and to take my vitals. She was followed up by my nurse, who gave me an IV port in preparation for my CT scan during mapping (the contrast fluid, like the others I’ve discussed previously, is given through an IV). Interestingly, she asked me if I wanted it in my chemo port or in my arm. I decided I wasn’t ready for the trauma of having a line run into my chest just yet and opted for a traditional arm vein. It came up during this conversation that my nurse also had a chemo port installed. I didn’t ask why, which I figured would be impolite, but my first reaction was no longer of curiosity, just sadness that another younger person has to walk around with this bullshit.

    Dr. Panner was unavailable to meet with me, but it wasn’t really a big deal to me. He’s not some sort of final boss like a video game- he’s more of a supervisor. He checks, validates, and troubleshoots problems no one else can figure out. The LPNs, RNs, radiation techs, and the other worker bees are the ones that would handle me day to day so it was more important to me to see their faces.

    The mapping process was virtually identical to the one I did at the Army hospital’s RadOnc, so if you want to relive that experience, check out this post. As soon as I was done, they said that I’d be starting in just over two weeks, to expect 33 treatments, and to expect a call within a few days of the start day to hammer out a report time. In the meanwhile I had appointments and other preparatory chores to keep me busy, but nothing exhaustive. I still had the big decision looming over where I wanted to do chemotherapy, but that wasn’t super pressing at the moment.

    I discussed it with mom, and we decided it would be best for her to fly home for a couple weeks because there was no real purpose for her to be here if I wasn’t going to be starting treatment when we first thought on 3 March. She booked a flight out for the next evening and that ended part 1 of my mom as a caregiver. She made it to all the important appointments, helped me survive the tube and port placement, and was a forcing function to get me to address some tasks I know I’d have been overwhelmed by if left to my own devices. Good moms are hard to come by; I’m luckier than most in this regard.

    The next morning I had hastily scheduled a dental cleaning since I had space in the calendar to do it now. Because I wanted one as soon as possible, the clerk at my dental office sent me to an office across post that I’d never been to. It was almost serendipity, because as it turns out, my hygienist was a cancer survivor. He had melanoma that spread to his lymph nodes and he told me all about his treatment and recovery. It was a different cancer with a different treatment, but a fascinating perspective. The cleaning was unusually gentle and fast and left me wondering if he had taken it easy on me because I was in the same club, or if my teeth were actually just that clean. I guess I’ll find out in six months.

    After a fairly uneventful phone call with a different social worker at the cancer center pertaining to lodging assistance I was skeptical I’d qualify for, I said goodbye to my mom and hit the road to go get the kiddos.

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

    The Decision

    I had a pretty good weekend with the kids. My daughter played in her hockey game in the morning, per usual, then came home to work on a new puzzle I’d gotten her from one of the local thrift stores. It was 300 pieces, which was going to be a new record for her, and I wanted to give her some time to relax before we went to the park. It was going to be a ‘false spring’ day, sunny and over 60, so I was planning on taking them down to a playground near Puget Sound and letting them wear themselves out with the undoubted throngs of other kids.

    I met an old Army buddy there with his kids and brought him up to speed with everything going on with my treatment, and caught up in general. We generally talk a lot of shop when it comes to hunting, and I lamented that I still have a bag hanging in a tree in the national forest with some of my hunting camp supplies. It’s 5 miles one-way to this bag; with a 2000 foot elevation gain and it stays snowy until after Memorial Day… yeah it’s gonna be up there a while longer.

    My son, who is barely removed from being a toddler and has some sort of developmental delay to boot, started melting down and I knew it was time to go. He was upset to have to leave but was generally moving with us toward my car. Then the fucking ice cream truck showed up.

    Giving this thing the title of “ice cream truck” is pretty generous. Some of you are already picturing what I’m talking about.  This thing was a minivan that probably had a salvage title, a bunch of coolers in the back, and “not for individual sale” ice cream bars and sandwiches being hawked from it. The poorly adhered labels on one side and obnoxious music blasting from it were the chef’s kiss on this tetanus-mobile.  Under no circumstances would we be getting ice cream from this thing.

    This is the Rolls Royce version of what I described above.

    My son had other ideas, and at first I had to grab his hand and pull him along, then he went dead weight and had to be picked up.  I slung him over my shoulder as he had a meltdown and eventually got him into the car. He viciously resisted being put into his car seat as the meltdown continued, using all the physical tools at his disposal. Normally this doesn’t bother me, as I will always win this contest, but in this instance I was nervous he’d grab at my tube or headbutt my port. Fortunately he didn’t, and by the time we got home he was done giving us a piece of his mind.

    The start of the next week was ushered in by me throwing on my uniform and showing up to the office. It was about time I rolled in and started chipping away at what few tasks remained on the docket. Right after lunch I decided I’d had enough and left to see about some prescriptions and other admin items that I needed to get sorted out. I felt as normal as I could tolerate for half a day.

    I had my mandatory referral to behavioural health, specifically a clinical psychologist who sees cancer patients, the next day.  It only took me four tries to get to the right office, as the annex I went to was loaded with ambiguous titled BH offices. Once I made my way to the correct place I filled out more paperwork, and was sat in front of a computer to do a fancy screening to make sure I wasn’t going to kill myself of others.

    I sat down with the psychologist and began to talk about the results of the screening (I passed with flying colors, you all are safe… for now) and a variety of subjects. He assessed that I was very resilient and had a good support system, so that if I wanted to come back I could do so on an “as-needed” basis. I am choosing to believe he is right and this is one appointment that I can permanently shed.

    It was around this time I started to solidify the decision about chemotherapy in my mind. The choice was: move my chemotherapy and all my specialty referrals over to the cancer center, or keep it all at the Army hospital. Ultimately I decided to keep it all at the Army hospital. Logistically speaking while yes, I’d be driving to the cancer center every weekday, over the long term and in acute instances I’d be seen at the Army hospital and it just made more sense to keep as much under that umbrella as possible. 

    While this was 100% my decision to make, I still felt a great deal of relief calling the cancer center to cancel my onboarding appointment with them later the following week. It just made sense, so, naturally, I fully expect this to blow up in my face.  Old habits die hard; in this case in the pursuit of not dying at all.

    (Author’s note: This may be the penultimate or final ‘prologue’ entry. Stay tuned)

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

  • Prologue Part 10: False Start

    Chaos Comes to Those Who Wait.

    Monday was supposed to mark the beginning of my last week of normalcy, or what I’m beginning to recognize will be “old me” in a few months. Instead, Monday upended my entire treatment plan and injected chaos into my care team.

    When I hit the road to Seattle to visit the local university cancer center, I felt like I was checking another block- just another task to complete on the road to treatment. I was going there to get a second opinion, on the referral of MAJ Rafferty from RadOnc, to see if I was a candidate for “proton therapy.”

    “In very basic terms, the main difference between proton radiation therapy and photon radiation therapy is the type of particles used to deliver the radiation.

    Proton radiation therapy uses protons, which are charged particles. These protons release their energy mostly at a specific depth in the body (called the Bragg peak), so they can target tumors very precisely with minimal damage to the surrounding healthy tissues.

    Photon radiation therapy uses photons, which are light particles (like X-rays). These photons release their energy as they pass through the body, meaning they can affect both the tumor and the healthy tissue along the way to the tumor.

    In summary, proton therapy is more precise and may spare more healthy tissue, while photon therapy is more commonly used but may affect more surrounding tissue.” -ChatGPT

    To make this into a military analogy: Proton therapy is a sniper rifle trained on a specific target. Photon therapy is a hand grenade addressed “to whom it may concern.”

    MAJ Rafferty knew that proton therapy was not widely practiced on adults (it’s mostly a pediatric therapy due to the smaller impacts on long-term quality of life) but wanted to see if I was a candidate “because of my age.” At 38 years old I was now suspected to be more in league with an eight year old than an 80 year old. What a time to be alive.

    After, yet again, being the youngest person in the waiting room by several decades, I was seen by a RadOnc resident where I was immediately told I was a good candidate. The RadOnc head and neck specialist, Dr. Panner, then came in and, in very monotone serious terms, explained that not only was I a candidate because I (ostensibly) have a lot of life left to live, but also because the cancer is in a sensitive area. He immediately wanted my consent to treat me and to consolidate my care under the university hospital cancer center umbrella.  Life comes at you fast.

    I told him how important it was for me to hear from my team of Army doctors that they agreed with his proposed treatment plan and that they should be able to reach a consensus with him. I knew them and trusted them, so it was important to me that they blessed off on his proposed treatment too. Fortunately, his treatment plan was virtually identical minus the change in location.

    This was a lot to take in in the span of minutes. You know what else is a lot to take in? Another scope to the face. Dr. Panner decided this was an excellent opportunity to teach his resident how to perform an oropharyngeal scope. I anticipated this, to some degree, but that didn’t make it any more pleasant. The scope itself doesn’t really bother you: it’s the numbing agent. It happens as a nasal mist that then runs down the back of your throat and, before it numbs anything, tastes terrible.

    It was late by the time we left the university hospital, and there wasn’t an opportunity to communicate my news to my Army team of doctors. First thing the next morning, however, I fired off a series of emails to my doctors to let them know what happened the afternoon prior. Closely after that, my ENT nurse called me to ask me what I wanted to do. I told her that, pending the input of the Army doctors, it made sense to me to keep all my care under the same banner, but not to turn anything off yet at the Army hospital.

    Enter another agent of chaos: I was then called by the proton therapy scheduler, who told me I’d be coming in Thursday afternoon to repeat the mapping process I mentioned in an earlier blog post, but she also told me that the chemo center was backed up so I should proceed with doing everything at the Army hospital since it was already set up there. Fair enough, works for me, I guess I’ll do that. It just so happened I was on my way into the Army hospital to do my “chemo class” anyway, so I could socialize all this there.

    While I waited in the MedOnc lobby I experienced an interesting phenomena: my doctor did a drive-by on me by grabbing me out of the waiting room (I wasn’t scheduled to see him as part of this class) and discussed the news of Dr. Panner’s office’s findings. He agreed with pursuing proton therapy and keeping chemo concurrent. I interjected to let him know that all was well in the world because they had just told me on the phone to maintain my treatment plan sans radiation at the Army hospital. All parties believed this was a good thing, but he raised the issue that traveling an hour north and south every day might eventually get difficult on me. This was a reasonable concern, and we brainstormed with the social worker, who approached us in the hallway, on how we might address this. The downside to being a broke-ass Captain is that while I make a lot of money on paper, roughly half of it flies out the window due to reasons previously mentioned in this blog; lodging assistance would have to come from private sources (if at all). Otherwise, the drive was the drive and I either wanted to live or I didn’t.

    I did an abbreviated version of chemo class. It was supposed to go longer, but once I realized the nurse was just going to read to me I asked her to hand over the materials for my later review and give me the grand tour.  I met the staff pharmacist, looked at the chairs, and asked some questions about what I was allowed to bring and what they provided in house. Turns out chemo is a four to six hour ordeal in my case, so chargers and devices are a must-have.

    I left feeling that, while logistically sub-optimal, this would be the path going forward. I was slapping the table and this would be the way. I wasn’t going to wait until April when chemo was available.

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

    Godfather’s is open. Right? Guys?

    When I was in my late teens me and three of my friends would pile into one of our cars and act like complete morons around my hometown of Kalamazoo, Michigan. We had someone from every demographic of dork-dom. We had Ted, the transplant New Englander who hadn’t figured out he was too sophisticated for us yet. Brad, the short chubby nerd. Mike, the goofy meathead. And me, the cynical asshole. We, as most men can attest, showed our care to each other by constantly harassing and berating one another. Real big “I hate you all but I’d die for you” energy that, so far as I’ve observed, is only common in male friendship circles.

    We were cruising the mean streets of “The Zoo,” trying to figure out where we were going to eat, and in so doing also be obnoxious menaces to the general public (it was almost always Steak n Shake).

    As we brainstormed somewhere other than Steak n Shake late at night, there was a period of silence when all you heard was Mike meekly saying, “Godfathers is open? Right…? Guys…?”

    Me, Brad, and Ted all contemplated this briefly, and in unscripted moment of perfect unity turned to him and said, “MIKEY, SHUT THE FUCK UP.” It was poetry. When other people want to make a statement with an increasing lack of confidence, the common cultural reference is “I’m Ron Burgundy?” – we have “Godfather’s is open. Right? Guys?”

    The next agent of chaos came in the form of a phone call the next morning. She was a nurse with the MedOnc team at the university hospital and wanted to know when I could come in for chemo lab testings. Uh, what? I explained to her what the RadOnc scheduler had told me from her same hospital and she was perplexed, as she didn’t know why they’d say that because they could absolutely get me in to start chemo on time with proton radiation.

    “Do you still want to go ahead and make an appointment?” she asked.

    “Godfathers is open. Right? Guys?”

    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.