CPT Cancer

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

Tag: single father

  • 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.

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    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.

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    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.