Aftermath

I thought a lot about how I could describe the days that followed my first chemo infusion. I was torn between a part of me that wanted to chronicle the pain and suffering in agonizing detail, to really give it its “due”, and another part of me that wanted to deny that most pitiable of moments its time in the limelight. Part of the reason is that I’m not all that excited about reliving the experience, if I am being completely honest. Still yet, another more practical reason was that I simply lacked the mental horsepower to even attempt the task.

How many times a day are we surveyed about our basic well-being by those are most often too busy to listen or even more commonly just don’t care? The clerk at Starbucks, the gas station attendant, the gal who calls from the hospital to perform an obligatory survey about the quality of your stay…they all ask “How are you today?”,or some iteration of the same question. I’m not convinced that anyone actually wants to hear that answer, or at least they are few and far between. Even more rare is the person willing to answer that question honestly because, let’s face it, life is complicated and full of struggle. Setting aside these general rules of engagement, here is how I might have answered that question during any of those seven hellish days.

Pain

The varying presentations of pain that I have experienced during the initial months of my dance with cancer could best be described as a moving target. First, my shoulder. Then my upper chest which quickly moved to my neck. Later these would disappear with proper pain medication and I would be left with pain in the lower left side of my ribcage that was acute enough to exceed the capability of the narcotics to mask it. Then I would have a thoracoscopy that would consist of three incisions in my left side, including the site of my chest tube, which prevents me from sleeping on my left side (or right side due to the way my left arm hangs and aggravates it).

By this time I would long for the days when my shoulder was just a little bothersome. Advil handled the job in those days, then when that wasn’t enough it became Norco for a short time, which quickly upgraded to Percocet, and then simply Oxycodone. When that was no longer enough I was prescribed OxyContin, Oxycodone’s “long acting” cousin. Now I was on a round-the-clock regimen. Never a moment that wasn’t medicated in some way or another. I would love to say that was finally enough to manage things, but with each new hospitalization and new pain symptom, the team of doctors had to reach higher. At some point only liquid Dilaudid delivered intravenously did the trick, and I had a sincere concern that I would never be able to step free of the hospital again. Before they released me back into the wild, the team of palliative care professionals had me on Fentanyl slow release skin patches, and Dilaudid in pill form for breakthrough pain relief in crisis situations. If you have been following the development of the pain management regimen and thought to yourself “Wow, that’s a lot of drugs…” you aren’t alone. I was formerly someone who didn’t even like to take Ibuprofen for headaches just because I am not a fan of pharmaceutical interventions. Funny huh? Now my poor pharmacist gives me a concerned look every time I go to pick up new prescriptions. A soft spoken Indian man who is rarely roused to interact more than the minimum amount for any reason, he now gives me the same cautionary look and disapproving furrow of the brow that so many parents have worn when trying and failing to guide their offspring away from a troubled path.

So how did the chemotherapy affect my pain levels that first week after coming home? Probably not at all. Here’s the thing, I don’t know that I could say for sure that there is any pain directly associated with chemo for me. Or, if there were going to be, perhaps I was on so many drugs that it was just a drop in the bucket and they were already provided for in advance. Don’t get me wrong here, this isn’t to say that there was no pain during that time, in fact quite the opposite, but I don’t know that I could attribute it to the chemotherapy or immunotherapy drugs. Instead it was the same feeling of heavy suppressive fire being applied every day to my overall resistance, pain tolerance, and fighting spirit while I welcomed a whole new host of symptoms for which I was most wholly unprepared.

Nausea

Coming home from that first chemo infusion, I actually felt ok. There is a pre-infusion medication suite that really helps getting you off on the right foot, and I must say that I was lulled into a false sense of wellness that would not have fooled a more experienced Chemotherapy Patient. The first day back home was a Friday and my older brother Dan came over to visit with me on his day off and spent the majority of the day hanging out. He hopped into action manning my Big Green Egg in the backyard and fed me a King’s spread of Seared Tuna and Smoked Salmon. We spent the better part of the day in a state of semi-relaxed vigilance, knowing that symptoms should be expected and forthcoming, but at the same time, hoping for the best.

Up until that time, my nutrition had been somewhat of a topic for concern. For one, I had been in and out of the hospital a lot. My last week spent there started out as an ER trip because I couldn’t eat or drink without pain, and became an extended stay out of concern over a GI bleed that resulted in an Endoscopy and two (yes that’s right- two) colonoscopies. These procedures both required fasting beforehand, and the latter of the two also required a full bowel cleansing regimen (ingesting 8000 liters of foul liquid designed to clean out your digestive tract) that had to be repeated twice. So to recap, no eating and lots of….cleansing. In addition to all of this, pain medication, odd sleep schedules, GI procedures, and just generally being hospitalized do not make for the best eating conditions. On top of this, I retained a lot of liquid that I will credit Mandi for noticing when my doctors did not find as much of a concern. I was bloated to kingdom come. I really wish I had taken a photo because it was a sight to behold. My torso looked like an ice cream cone that had been entrusted to a child on too hot a Summer’s day, bulging on one end and melting on the other. My ankles were canned hams, and I could feel the fluid pressure in my shins the moment I tried to put my weight on them. Given all these things, it was easy to miss the other changes happening to my body. I ended up losing a lot of weight during this time without really realizing it. When I left the hospital after the GI adventures I weighed around 200 lbs, which was normal enough for me. But within a couple weeks, after addressing the swelling and extra fluid retention the scale would show me down 27 lbs to a paltry 173, which is a number I had not seen in my entire adult life.

And with each minute that passed I fell further into that deficit, lacking the calories needed to keep me from wasting away. Food seemed impossibly disgusting and it turned my stomach just to think of it. Meals were out of the question, and most days I subsisted on a few spoonfuls of applesauce and saltines. Even the pills that I so desperately needed to take to control my pain and other symptoms were nauseating to contemplate. It got to the point that even sips of water had to be carefully planned in advance if they were to be executed with any degree of success. Perhaps the worst part of this all is that I was so unaccustomed to the symptoms of nausea that I was terrible at identifying when “anti-nausea medication” would be helpful. Too often I was already at the point of vomiting before I had realized the reason I had been feeling so shitty was nausea related. Live and learn.

Then there were the smells. One of the benefits of being hyper nauseated is an acute sense of smell. Just ask any pregnant woman. But for me the hyper alert sense only served to make me hate and avoid even more things. I thought I had found a friend in Cinnamon Toast Crunch, until I got the scent of cinnamon stuck somewhere in my olfactory glands and became convinced it was also poison. I couldn’t eat it any longer. Then it was my toothpaste that became associated with that disgusting queasy feeling thanks to my habit of brushing my teeth after tossing my cookies (it’s a figure of speech, I couldn’t even eat cookies). I had to change brands to something less minty. And then there was just the smell of anything else in the house that I could detect at all. I became convinced that I could smell death and decay everywhere and had to either wash, clean, shower, scrub, or shampoo the items in question to purify them. Since I was nowhere near useful enough to efficiently keep up with that, I was more likely to run from these smells and preferred to be out in the fresh air whenever possible.

Sleep

Of course, when you are in pain constantly, and feeling sick to your stomach around the clock, sleep is a luxury that not many can afford. I was no exception to this and sleep was one battleground that I feared most. The night approached inevitably with the passing of each tortured day, but never brought the relief that I was once accustomed to in better days. I did most of my sleeping during the day since it was somehow easier to find a comfortable position for me to relax and lie down. I would later learn that many of my sleep issues were related to my chest surgery and nausea issues combined together into a miserable super-duo.

In any case, my days were largely consumed by long and unplanned naps thanks in part to my rough nights, and the other half thanks to narcotics. When I finally did stir in between naps I was usually approached by Mandi with the latest batch of pills I hadn’t taken on time, or to try to force some food or fluid into my system. I reacted with all the cooperation of a dementia patient and refused to take all of my pills, food, water or even advice if it seemed too much to swallow. To her credit, most of the resistance was presented in the form of non-verbal grunts or disgusted faces, and little dialogue, and she still persevered. Sadly, despite my terrible side-effects and the impact they had on me, Mandi somehow was tasked with not my only keeping me alive, but running our entire life by herself. I wouldn’t have blamed her for dropping me off at the fire station.

Despair

And so the sum total of my side-effects from chemotherapy could best be wrapped up in that one word…despair. Probably the single most impactful, permeating, and intrusive of all was the feeling of despair. On a pretty regular basis, I would say that my normal disposition is balanced, and even leaning towards optimism. Definitely not someone who focuses on downsides, but rather helps others to see the silver linings if possible. It is a primary personality asset that helps me get through a great many challenges in my career, relationships, conflicts, and to just have a generally good time in life. But this is also why it is so scary to watch that spiritual armor wear down to the point of virtual non-existence.

When I was able to be alert enough to notice them, I found myself watching people go about their day and perform normal tasks. Walking to their cars. Pushing a baby stroller. Summoning a burst of energy to beat the expiration of a crosswalk signal. It became impossible not to envy their command of mind and body, a connection that I once had that seemed long severed. My body no longer did the work that my mind commanded, and in my drug-washed wakefulness I found myself mentally dissecting them, as well as myself. I wished for that state of being, prayed for it to return. And then wondered why it had all abandoned me.

I often hear people speak of a moment of clarity that is a common experience among people who have been diagnosed with cancer or another serious disease. They often feel a sense that they will no longer take the small blessings of their life for granted and can walk away with a sort of gift of awareness. Whenever I hear those stories I totally understand them and agree that to recognize this is a gift, except for me it was nothing new. I already knew how good my life was. I knew how many ways I had been blessed, and I counted them often. Why did I need this extra lesson? Perhaps they are fruitless questions, but I asked them as I watched parents walk their children to and from school in the manner that I used to just months ago. I wondered when I would be able to again.

The cumulative effects of the chemo had a way of siphoning color from everyday life until there was nothing to see but shades of grey. Even the sounds of things that I loved, my kids screams of glee, the excited yelp of the dogs playing, they now had a way of beating me into a retreat. It was as if they were spoken in a language that I no longer understood, and that language was joy. They only made me want to crawl away and hide. I began to imagine futures that only included suffering, and that only included pain. To think about all of the ways that you could be burden to those who once counted on you for support and those you loved most and to become caught up in a whirlpool of self doubt that is truly bottomless. For me I never felt the danger of becoming lost in any real sense, but it was easy to see how one could do it. To peer into that abyss must be one of the most terrifying experiences for anyone.

Fortunately, I came into this with knowledge that I “wouldn’t feel myself” and my doctors had advised me that I would have thoughts that seemed very foreign to me. I couldn’t have thought of a better description for those thoughts. They weren’t me. But I was having them all the same. I fought to suppress them, and to hold out until things turned around. My oncology team all reassured me that I would turn the corner at any moment.

Relief

And finally there was a change. Thursday evening at 7pm if I had to mark a specific moment of realization, and a full week since I had undergone the infusion therapy the Thursday prior, the symptoms began to break. The first thing that I noticed was the hunger. I was actually hungry for food. I woke up the next morning and felt a slight shift in my mood, was it…hope? I actually felt eager for the day to begin and was ready to go after it. The color and temperature began to return to things and then seemingly, all at once, I felt like me again. It is difficult to communicate how quickly my mood, appetite, energy level, and even pain improved. As if being rewarded all at once for my suffering, I was able to do the things I couldn’t or didn’t want to just a day earlier. I had finally reached the other side.