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.