CPT Cancer

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

Tag: cisplatin

  • 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 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.

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    Day One: Chemo 1 & Proton 1

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

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

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

    “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 9: We Are Legion.

    Treading Water.

    I have a long history with being in the water. In high school I was coaxed into joining the varsity swim team by the JV football head coach who was, not surprisingly, the coach of the boy’s swim program at my school. He was passionate about coaching, but unforgiving as a designer of practice routines. Treading water was a favorite of his. It’s also a big part of the Army’s combat water survival test.

    Treading water is the act of staying in one place and remaining above the water upright without floating. This means remaining stationary by kicking your feet while pointing them straight down and paddling your arms in small motions so you don’t inadvertently float on your front or back. There are different techniques to do this to conserve energy, but when done for long enough, especially after a taxing swim, it can quickly turn into a slow descent to hell if floating on your back isn’t an option. Exhaustion slowly consumes you until you just want to swim over to the edge of the pool and endure whatever verbal abuse awaits you for wanting a break.

    The week started off simple enough with a mid-morning appointment to speech therapy, with an afternoon appointment with the geneticist. Now I don’t have a speech impediment or learning disability, at least diagnosed, but the speech therapist is all-things mouth and throat muscles. One of the wonderful potential side effects of radiation therapy is long term difficulty swallowing, and they needed to get a baseline measurement of basic mouth muscle function to assess where I am at post-treatment so a rehab plan can be constructed when I make it to the other side of this thing.

    The speech therapist had been doing this since I was born, quite literally, and was a very charming older woman that took literal measurements of my mouth and throat, and observed me drinking water and eating crackers to see if I looked… normal? I actually have no idea, but it passed the common sense test so I didn’t ask what she was looking for specifically other than knowing whatever tests I was given were passed without issue.

    After some “empathetic listening” to my tale of woe, she offered to pass my information on to another active duty soldier that she regularly saw as he rehabbed from his own head/neck cancer that received similar treatment to mine. I was absolutely craving to talk to someone with firsthand experience of what I am about to endure and jumped at the opportunity.

    Later that day I stopped into the place where the geneticist hides out; I only mean that in slight jest as the hospital directory makes no mention of their office and they are buried deep inside a pediatric care clinic. The reason? She mostly serves to perform genetic testing for parents that might be passing on spicy DNA to their newborns such as chronic diseases and other ailments. In my case, MAJ Rafferty saw enough family history of cancer in my family to auto-refer me to this office. After a pleasant talk with the geneticist, she didn’t believe my cancer warranted any immediate genetic testing since its markers were not genetic in nature and it didn’t present itself elsewhere in my family. She did agree though that it would be worth it to come back in after treatment and discuss a test to see if I’d passed on any other cancer markers to my kids. I might just take her up on that offer.

    The next day I made my way to the audiology clinic because one of the often overlooked side effects of cisplatin chemotherapy is hearing loss, with the best case being amplified tinnitus (just about everyone in the military, especially the GWOT generation like me, has tinnitus) and some sort of higher-frequency loss. The audiologist, as in THE audiologist- not a tech, was there to perform a higher level of hearing exam than your standard “press the button when you hear the beep.” I underwent a comprehensive exam to establish my baseline because, in reality, hearing aids are likely going to be part of “new me” when I get on the other side of this.

    IYKYK

    The hearing exam itself isn’t invasive, but it does take a while and involves not just headphones and buttons, but other diagnostic tools and even speaking back words that you hear. Overall my hearing is, somehow, in decent shape at the moment- perhaps the biggest surprise of the week up to this point.

    This brings us to Thursday, and my second consultation with Dr. Ferrell at MedOnc. This was a replay of our first meeting with more questions and explanations of the side effects of cisplatin, the chemo agent, as my proposed course of treatment.  We discussed my pending appointment with the civilian cancer center at the University of Washington to discuss my candidacy for a newer type of radiation, and what impacts that might have on my treatment plan.  Ultimately, I signed the chemo treatment consent form and scheduled a “chemo class” for the next week so I could, like any other part of the military, be trained on how to prepare for my two to three rounds of four-hour chemo treatments.

    Finally, Friday, TGIF, no medical appointments… but still relevant medical news. Dr. Shannon, the ENT oncologist from the local civilian hospital, called me back with the results of their own tumor board first thing in the morning after he left it; they concurred with my Army hospital team’s treatment plan with the exact same conclusions about my variety of cancer. In a way this was a relief: now I knew that surgery was off the table altogether (for now) and I could focus on the sure-fire treatment plan of radiation and chemotherapy.

    Now, I realize that was a dry list of appointment summaries, but that is my daily existence. Medical appointments, preparing my home for the next few months, flushing my feeding tube, showering (which is its own laborious process when you have medical shit sticking out of your body), and corresponding with people.

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    There are dozens of us, dozens!

    Friday morning I met with the gentleman (we’ll call him Trevor) that the speech therapist put me in touch with, and we met at a local Starbucks to swap tales of woe.

    He was diagnosed with a different flavor of head & neck cancer in 2023 and was about a year into his recovery; he had been seen by civilian cancer treatment providers at a hospital center south of the Army installation because, at the time, the Army hospital was short staffed. The only overlap we had in providers was the speech therapist, one of the ENTs we both see now, and the nurse case manager. We weren’t there to talk about that though: this was basically a gentle interrogation; I absolutely grilled him on treatment and side effects.

    Trevor painted a grim picture. Neuropathy that made hiking on anything but a flat surface very difficult, limited range of motion in his neck, and he’d only recovered 50% of his stamina in the last year. This man works in special operations and his pre-cancer hobbies were mountain endurance races and long distance road biking; if anyone was going to recover quickly it would be him and the fact that he wasn’t scared the hell out of me.

    He had to modify the trigger on his rifle so that he could feel himself pulling it, and he didn’t trust himself walking anywhere other than flat ground. He told me how he got severe infections and feeding tube failures that caused a few overnight hospital stays. He told me how he gets throat dilated because it isn’t healing correctly. What. The. Fuck.

    No thanks, I’ll just die.

    Trevor’s story wasn’t one of hope to me: it was one of survival. Like Hugh Glass scratching and clawing his way back to civilization. My morale was crushed.

    I had a hunting trip that ended like this once.

    Everyone I spoke to later that day tried to talk me back down to Earth and tell me things I already knew: Everyone’s cancer is different, everyone’s treatment is different, everyone’s response to treatment is different, and everyone’s recovery is different.  I know all of these things, but, still… Jesus Christ man.

    One of the silver linings from my discussions with Trevor was he began to dump resources into our text chat that I didn’t know about- different programs that might help speed recovery along if I can manage to get the Army to pay for it, or at the very least, approve the time off. Something to look forward to trying, at the very least.

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    The Salvation Army

    During the week covered in this entry I finally lit the beacons: I posted on Facebook ways people could help. Those that know me best know how difficult for me this was. I am typically a private person, at least digitally, and asking for any kind of financial help is almost unheard of.  In fact, outside of my divorce, I can think of maybe only 1-2 times in my entire life I asked someone to borrow a significant amount of money.

    Yes, I’m a Captain and, on paper, make good money, but I get absolutely butt-fucked by child support, alimony, childcare, and other divorce-related debt. So I still live on cherry lieutenant money at best. Couple that with living in a high cost of living area, and having to take on a live-in caretaker, and making large diet and lifestyle changes with little warning, and financial turbulence follows.

    I decided to act, and made an Amazon “cancer wish list” for supplies I knew I’d need, or at the very least would make life easier during treatment and recovery. The response from my family, friends, and acquaintances was overwhelming and immediate. Within minutes the list started getting exhausted, and over the next week I was getting body-slammed by the post office, UPS, and FedEx. The amount of support people showed was surprising, and touching. People I hadn’t heard from in months, or even years, came out of the woodwork to send something I needed like the adhesive patches needed to take a shower with a feeding tube, or things to make my life more comfortable like a heated blanket. 

    If you’re reading this blog, and you want to help out, I would appreciate it if you made a donation to one of these organizations so that we can find better ways to prevent, treat, and cure cancer:

    American Cancer Society (4 Stars on Charity Navigator)

    American Association for Cancer Research (4 stars on Charity Navigator)

    Western Michigan University (my alma mater) Homer Stryker School of Medicine

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    The Open Road.

    After meeting with Trevor I hit the road. I travel 158 miles to and from a Walmart in Oregon almost every Friday and Sunday to collect my kids from their mother, with few exceptions. The drive itself is manageable. Typically I listen to audiobooks, music, or catch up on the phone with people. Collectively in the winter time, it’s probably the largest chunk of time I have when I’m awake and alone in a given week. This is amplified now that my mom is living with me for the next few months while I navigate this chapter of my life.

    This was going to be the weekend I told my oldest daughter about what was happening, within the limits of her ability to understand it, and I thought it was important that her mother was part of the conversation.  After talking it over further, however, we decided to give it another week. The trick here was I had to explain to them that “dad has an ouchie on his stomach and you have to be careful.” Fortunately, that was the limit of their curiosity for the moment.

    My daughter plays hockey every Saturday morning. It’s one of the few staples of normalcy she gets to cling to from her old life when her parents were still together.  With my mom here this presents an opportunity for her to enjoy this time even more because now I can be more of an active participant in it.  See, her brother is a ball of destructive energy that requires constant supervision or he will do something to kill himself or others through his acts of daring. This means instead of watching her play, I have to follow him around the rink to ensure he’s not causing a major incident or earning himself a trip to the ER. Enter grandma.

    My mom has been a saint for this entire episode and the fringe benefit this early into the journey is some help with the kids. When you’re a single parent you are playing zone defense most of the time when multiple kids are involved, so it’s nice being able to play “man” and devote attention to one at a time. My son stayed home with his grandma and I was able to give my daughter the attention she needs and deserves from her dad in this setting. 

    In fact, because the rink staff is terminally shorthanded, I volunteered as one of the bench coaches for her game. At her level of hockey this means that I make sure everyone is taking turns as a goalie, they are getting in and out of the bench area on time, drinking water, gear is on correctly, and keep them from doing dangerous stuff on the bench. My daughter was thrilled to not only have me able to watch more than 10% of her play, but she could actually talk to me between shifts and be able to hear me give her feedback on the ice. Thanks mom!

    I had a good weekend with the kids. I even got to take my oldest to the local junior league game thanks to a donation from a hockey family we know, and my daughter had the best time. She gets to watch hockey, talk to people, dance every few minutes, and hang out with dad. I get to watch hockey and watch her have a great time; you can’t ask for a better dad/daughter date.

    (Author’s note: I don’t know if this is the penultimate prologue entry, or if there are more to come due to a recent development in my treatment plan that might throw a wrench into the timeline. Stay tuned, I guess?)

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