CPT Cancer

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

Category: Recovery

Recovery from cancer, treatment, and my “new normal.”

  • Recovery 6

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

    -Jax Teller, Sons of Anarchy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

    I. Was. Furious.

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

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

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

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

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

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

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

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

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

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

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

  • Recovery 5

    I’ve been thinking about this entry ever since the previous one. The thing about this blog is it’s semi-anonymous, meaning, those who know me know it exists. There are sure to be some strangers who stumble onto this as they barrel through the internet, but they are probably the minority. When it comes to speaking about cancer-related subjects, my self-censorship is low but never zero, but personal subjects get a more sanitized treatment.

    Why? Three reasons:

    • When you’re a single dad, you have to have a healthy amount of paranoia about what parts of your life are public. What about my digital life can be weaponized against my visitation rights, me, or my wallet in a dispute with the ex? In many places, women are still the default residential parent and aren’t conditioned to have to look over their shoulders like many men are. But hey, that must be some more of that “privilege” I’ve heard so much about.
    • As I opened this blog with several months ago, I’m an active duty Army officer (and Public Affairs Officer to boot). There are no shortage of people out there that wish to do my career, or me, harm because of what I do for a living or because of opinions I express that don’t align with theirs. A couple years ago I made the choice to no longer participate in many online discussion forums for this reason, and have muted my online presence to a decently high degree to prevent such a witch-hunt.
    • You want to get something off your chest, but don’t want to discuss it further with anyone, so you avoid saying certain things to avoid that hassle of reliving these thoughts over text/phone/in-person.

    Why do I bring this up?

    It stunts me from treating this as a true unfiltered journal, and while there are a wealth of subjects I have a lot of nuanced thoughts on, at the end of the day most of them would only serve to harm me in some form or fashion- so we’re going to try and stick to the script here and keep this about the things on the title page of this blog.

    Obviously this is the first time I’ve written anything in a while. Not for lack of interest- I have thoughts all the time that I think, “Oh, I should add that to the blog.” However, they get lost in the fog of fatigue and life as it happens around me, and they rarely make it in. A lot has happened, most of it positive in some way, but I am far from normal and my body isn’t shy of reminding me of that fact.

    After an extended Father’s Day weekend with the kids they were back to their mother’s for the first half of summer break. I’m fortunate that I have the second half of summer with them this year specifically, given everything that’s transpired, but it doesn’t make it easier not having them around for so long. Now my contact is relegated to whenever their mother feels like answering the phone and acting like an adult that’s capable of communicating respectfully when she can’t, which has been challenging already.

    I actually went to take them back to the exchange point after this last visit, despite only being able to drive part of the distance before my eyes started to act up from either the strain or some kind of mystery allergy. I’ve heard that chemo wipes out your allergies, but I am starting to think it’s just reddit bullshit from people who, like me, were shut in during allergy season and spared their normal seasonal allergies. Sneezing is just about the most painful thing in the world for someone like me, and I’ve had to try and hold in many to avoid the pain it causes in my throat.

    A couple days after dropping the kids off my mom departed. I had gained enough medical clearance, and physical independence to do basic things for myself like nutrition, driving to appointments, and walking without any assistance. With the kids not needing to be picked up anymore until later in the summer, it was finally time for her to leave and return to her life in Florida where she and her husband are semi-retired. I was getting antsy to be back on my own prior to this, but I’m glad she hung on as long as she did; at times I’ve needed more help than I’m willing to admit.

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

    With my newfound independence I knew I had to redevelop routines long lost to the annals of time. I came up with a feeding routine that needed to accommodate my still very irritable throat with my caloric needs, and I mostly have. It started with just calorie shakes, oily and fluffy scrambled eggs, and ramen noodles but I’ve expanded the aperture of my diet slightly since starting that dietary regimen. Now I’m able to introduce finely shredded meats (think canned meats like tuna/salmon/chicken) as well as canned fruits like pear halves and peaches.  All fruit products that have a lot of juice content, like canned fruits and apple sauce, still sting after a while because of the acidic nature of it, but it’s the only real way for me to get fiber and the vitamins that they offer in a way that doesn’t hammer my throat.  I tried clam chowder for a while, but the potatoes just became too much. I’ve found I can make and eat runny instant mashed potatoes with generous amounts of gravy, but solid potatoes are very much a bridge too far.

    I’ve gained five pounds for all this trouble and have seemed to hit a plateau. The nutritionist at the cancer center said one way over the hump would be to introduce exercise, but all I’m really cleared to do is go on walks for as long as I can tolerate. So I walk. I walk every morning, usually to the University of Puget Sound, a small college a little over a mile and a half from my house. I wake up, check my messages, and I walk. This route usually takes me about an hour. When I get home, I eat my eggs, do the dishes, and sit down to watch the morning news. Shortly after I try and do some sort of task or chore, if I don’t, it won’t get done until I’m done dozing off between breakfast and lunch.  Speaking of, lunch is typically a pack or two of ramen and a can of fruit, and sometimes a boost calorie shake. Then back to vegging out, as now it’s the heat of the day here in the Pacific Northwest and going outside is hazardous to the skin on my neck without taking a bunch of precautions I just don’t feel like taking unless it’s necessary. That and it will increase my water intake, which is already over four liters per day due to my dry mouth and activity.

    And let me tell you about fuckin water. There was a huge problem at the end of my treatment with not getting enough hydration, which is essential for the body to heal things like radiation burns inside your throat. I was doing my daily hydration appointments to get even a quarter of what I really needed, in fact, that was probably just keeping me alive at that point. It wasn’t until the feeding tube episode that I really began to turn my hydration around. Now that I’m drinking obscene amounts of water I am constantly on the other end of the equation, peeing multiple times an hour. Not little piddly streams either, these are grown man pees, and they happen all night long too. I wake up no fewer than three times per night to pee. I’m getting a taste of elderly life I think, and now I can understand why some of them are so goddamn angry all the time.

    I also can’t go anywhere without water. It’s a literal showstopper to the point where I keep a case in my trunk not just for life/death emergencies like any other supply, but for when I rush out of the house without the only water bottle I have that fits in the cupholder of my car. I’ve become dependent on access to water like some people get chemically addicted to controlled substances.  I can take morphine for days on end and have no withdrawals or cravings for it, but if I got more than 10 minutes without a sip of water it feels like I’m back in Iraq and the convoy just went black on water. (Note for civilians: “going black” means you’ve run out of some class of supply)

    The author dying of thirst in Iraq circa 2006.

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

    So aside from being constantly tired, unable to gain any meaningful weight, always having to pee, being lightheaded when I stand up, and not being able to hear shit, I’m doing ok. My doctors are content-to-pleased with my progress and are keeping an eye on me regularly. I get my hearing aids next month, and I’m told they have bluetooth, which is exciting. Now when the kids are watching a movie on the tablet in the backseat I’ll have something other than road noise to keep me company. I’m sort of burying the lede on this whole update though: I got the feeding tube out.

    After meeting with my oncologist in the middle of last week, I made a compelling case to finally get the tube out. It was absolutely priority number one for me going into that appointment, and I was keen on delivering that to myself. He put in the referral and later that day interventional radiation called me to schedule a removal for the next afternoon!  I had no idea what it would entail or how I would feel during and immediately after, but I figured however it felt would be worth the cost of not having it in my body anymore. Nothing destroys your confidence like having a PEG tube hanging out of your abdomen. The weird bulge in the shirt, the discharge, the maintenance, all of it had to go. All and all it was a very smooth deal. The IR nurse had it out before I even knew what was going on! They said it would partially heal in 24-72 hours with a full heal taking about two weeks. So now I have a gunshot looking wound in my abdomen, but now I can roll around freely in my sleep and have a little more self-confidence. It’s not like it’s advisable for me to get laid right now, but I like having the possibility on the table. Tell your lady friends I’m back on the market. The clearance rack, but, still… the market.

    However, the bad comes with the good, and I was told that the port had to stay until next year, after my one year PET scan. It wouldn’t limit me from doing anything that I want to get back to doing, but there is maintenance involved and wearing some backpacks can be uncomfortable if the straps are positioned wrong. It will be something I have to navigate or figure out workarounds for, but probably not a showstopper for when I start to resume the hobbies that bring me joy like hiking, hunting, and hockey.

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

    Nobody talks about the mental battle involved in all of this, at least, it’s not well-discussed. Granted, the physical impacts of every single step of this journey are known to a degree and shouldn’t be downplayed, but the mental part would be absolutely devastating if I hadn’t been through micro-doses of hell leading up to this whole scenario.

    I’ve always been a bit of an independent spirit, content in my aloneness. Ever since I was young I was fine, or even preferred, playing alone at times and as I matured into an awkward teenager with poor social skills I didn’t accumulate a penchant for being in groups of peers all the time. Today this is called a “social battery” but mostly I just needed space to think. My psychologist said I’m a ‘thinker’ and I think he’s onto something. Now, I can adapt and survive to and with almost any social setting, but ever since I moved into my own place in late 2023 I have fiercely guarded my peace and independence within the limits of my ability to do so. Here’s where the dichotomy comes in: having cancer is a fundamentally lonely experience.

    Yes, I was supported by my amazing mom throughout treatment and the early part of my recovery, and I had dozens of friends and family send care packages and check in on me in person and telephonically. My coworkers visited me during hospital appointments at the Army hospital, and a hodge podge of each member of a community I’m part of showed up at my bell ringing during my last radiation session. But, at the end of the day you go through this alone. Only other patients and survivors actually know what you’re going through. There’s no other way to experience this other than going through it. You can have empathy, understanding, and be supportive of someone going through this, but you can’t know the psychological toll it takes on them. (Note: I swear the next person that tries to relate to me with their story of losing their taste buds during COVID is going to get me arrested)

    Now amplify this with two children under ten, a co-parent that does not always act logically or rationally, being a commissioned Army officer in the current domestic and geopolitical climate, relationship woes, and any other stressor you can imagine… and remember that while all this is going on you are a hostage in your own body and have harsh limitations on what is safe or prudent to do. My cortisol levels have probably been off the charts since December.

    Why do I bring this up? If I act recklessly, I could return to my old self almost immediately, at least within the limits of my ability to do so. It would almost certainly result in a complication or setback, or possibly even a potentially fatal accident as I’d be effectively burning the candle at both ends. If I act on the guidance of my doctors and medical team, sure I’ll likely survive through the end of the first part of recovery, but the amount of joy I experience daily is cut down 95%.  Let me expand below.

    I played video games a lot as a kid and young man, but I started to grow out of it in my mid-20s and had fully grown out of it by the time I turned 30. Not counting deployments, I’d have spurts here and there where I’d go down the rabbit hole on a game, but by and large my dopamine rushes came from being present with my kids and spending time outdoors. I have played a lot of video games during this experience and in the last 3-4 weeks I can barely be bothered to look at the TV. When I made hockey a part of my life right as my marriage was beginning to end, it really took over my life in the best way.  It’s sunny and nice out now, this is the time of year when I should be scouting every weekend and playing summer league hockey and getting circles skated around me at drop-ins. Instead, aside from taking my morning walks, I sit inside making up chores to do in between naps and meals. I’m so burned out on video games, the news cycle, and the same uninteresting movies/shows on streaming apps. I can’t take any more screen-based stimulation.

    This whole mental state is undoubtedly exacerbated by the fact that I don’t have kids right now and haven’t since father’s day. I am not allowed to have pets, so a dog would’ve been a great solution, but this place I rent is too good for me to throw it away rashly for what I plan on being a temporary condition. Being a single father is not only all-consuming during visitation, but they are frequently on my mind on days and evenings I don’t have them. To add to this, their mother has been less cooperative with facilitating our video calls lately and it’s been wearing me out emotionally.

    I have a great tribe of people here I’ve developed over the last couple years since my marriage ended. My ex was never comfortable around “my people” and often made excuses to not go out, not wanting to have someone watch the kids, or would generally just insist I go alone. This made building a community challenging as the dynamic was such that staying home was better than going to spend time with peers, because what would be happening on the other side of my phone ended up not being worth the stress. 

    That tribe, however, has moved on like the rest of the world while I’ve been treading water. I’m a bit of a social burden: nobody knows what I can eat, what I can do, and what I’m capable of. I don’t blame that mindset whatsoever, because in large part yes- I cannot do big sexy hiking trips, or enjoy a barbeque banquet, or spend a huge amount of time in the sun (without getting extraordinarily tired and having to pee every 15 minutes). I probably feel like this because the first person that wasn’t my mom or Thomas came by to see me this afternoon: Rena.  She told me about her recent scan (if you’ll recall from earlier posts, she had cancer in her 20s and has to get semiannual PETs), the logistical headaches of managing the ladies hockey league, local politics, and some of the characters we both know. It was nice to just have an uninterrupted conversation with a fresh face. When she left I took a nap and then ate dinner, watched the news, and began to finish this entry that has taken me four different sit-downs to finish and weeks of thinking to put together.

    This isn’t the end of this journey, and I will have a lot more to say over the next two months. This is, however, the end of this entry because I could keep at this all night at the rate at which my mind is moving.

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

  • Recovery Week 4

    Just as soon as my mom’s husband was here, he was gone back to Florida. He’d done everything he could for me here, and lifted my moms spirits no doubt but we couldn’t smash us three plus the occasional pair of kids in my 850 square foot cottage forever. 

    Every week is a new adventure in my life ever since I was very first seen about the lump on my neck, and I’d thought that would slow down with recovery and every day would start to blend together into more of a groundhog day where the only noticeable difference is I regain some function or capability, or at least a portion of it progressively.  That’s still happening in a sense, but the world keeps spinning whether I’m trying to spin with it or not, and I don’t live in a bubble.

    This was the first week I allowed the infusion clinic to keep my chest port accessed throughout the week, versus the usual procedure of getting it accessed and de-accessed daily. What this means is I let them keep the needle inside the port with a small tube hanging out, kept on and secured by some adhesive strips and squares. I kept it accessed Monday through Friday, since my hydration appointments are daily, and it was overall less painful for me and easier for the nurses at the infusion clinic. I took a shower with it on, which was a little nerve-inducing, but nothing went haywire.

    For the uninitiated, having a port in your chest basically means I have a small plastic hose that runs from a vein near my heart to a type of, well, port that is just underneath your skin. Back in mid-February when I had it put in it was barely perceptible, at a glance, aside from the slight bruising and discoloration, and now that I’ve lost 35 pounds it protrudes fairly noticeably when I take my shirt off.  The purpose of the port is to have an easy access point pre-drilled into your circulatory system for things like chemo, which takes hours of being hooked up to an IV, scheduled hydration, and hospitalization. Instead of slipping a line into your arm, they can take a special port needle and tap right into your system from your upper chest.

    Image courtesy of the Cleveland Clinic, which, by the way, has an excellent public library of online health topics.

    Like I said above, no two weeks are the same anymore, but I do find myself settling into a mental lull as I grind through this period of “recovery.”  The damning thing is that I don’t even know if I’m in recovery from cancer, recovery from treatment, or both. I’m definitely in recovery from treatment, that much is obvious even with the painstakingly slow rate in which that’s being achieved, but I don’t know if I’m cancer free yet and that hangs over me like barely-perceptible anvil head clouds somewhere on the horizon. Is it there? Is it going to hit me? Will it swing away? Is it even there at all?

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

    My speech had really started to normalize during week four of recovery. I no longer really felt the need to hold back, keep my mouth artificially closed, or avoid certain tones. This was important for me to sound more like myself again, but maintaining conversations over a sustained period of time is difficult because of my dry mouth. It will take up to a year or longer for me to regain most of my salivary glad capabilities, which means I run out of steam quickly when having “long form” conversations, and I worry tremendously for what this means when I am able to begin exercising again. Water brings temporary relief, but I still have to self-regulate in this regard. Keeping my mouth shut, not exerting myself for a few minutes at a time, and trying to use medicated aids are the only real allies in that small battle in this larger war.

    The idea that I’m “exerting myself” brings a grin to my face even as I type it. I have basically no muscle mass left. During week four the most I could do was walk from the car into the hospital and to whatever clinic I was heading to at the beginning, but by Sunday evening I was able to mow my entire front and back lawn. Now, this is basically just walking the same distance as I would be from parking lots into hospitals and clinics, but outdoors and pushing a small electric motor- no small feat when you consider where I was a month ago. The downside to doing an activity like this however, is I’m completely worthless the rest of the day. Anything other than “sit in the recliner and rest” exacts a massive toll. What was, pre-cancer, an embarrassment of riches when it came to stamina, is now a near-bankruptcy. My body lives paycheck to paycheck when it comes to energy levels. Any time I challenge it I have to pay in back ten times over.

    Another wrinkle of this recovery period, however, is the inability to rest how I need. My ability to sleep has taken a hit. I can be incredibly tired, physically, mentally, emotionally, and even medications I’ve been taking that are known to help induce sleep do not even make a dent. About half the week, despite being completely exhausted, I was only able to get a few hours of restful sleep. This is not what progress looks like to me, but unless it continues I’ll chalk it up to a small bit of choppy water hitting the boat.

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    You’ll notice that this blog is being cut loose on a Friday of what would be “week 5” of recovery. This is obviously part of a pattern where the entries are slipping further and further “off schedule” of zero to three days after the preceding week I’ve been trying to keep for the core group of family and friends that manage to work their way through this blog to stay updated on my health. I have a lot to say, believe me, about this process and the health and non-health related wrinkles during this adventure, but I don’t think I will be attempting to remain “on schedule” anymore. I will still be making regular entries, but they won’t be driven as a weekly update format, but more event or need/news based update. There’s apparently the ability to subscribe to updates via email, if you aren’t keen on checking my FB/IG story to see when these float in.

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

  • Recovery Week 3

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

  • Recovery Week 2

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

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

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    Feeding Frenzy

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

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

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

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

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    Family Feud

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

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

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

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

  • Recovery Week 1

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

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

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

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

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    Hydration

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

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

    Average IV infusion experience at an Army hospital.

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

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

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

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

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

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    The Resurrection

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

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

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

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    Mother’s Day

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

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

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

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

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

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

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