Chemo, Descending into Darkness, & Living the Teenaged (Acne) Dream

Chemo is the ultimate ass kicker. It is a medical breakthrough that has transformed cancer treatment - killing cancer cells, shrinking tumors, and slowing or preventing the spread to other parts of the body. It can be curative in some cases, and even when it does not lead to full remission, it can greatly extend life in palliative cases. For all of these benefits, however, chemo remains, in my opinion, the devil’s tonic. A true mother fucker.

There is something so dissonant about pumping a life-saving medicine into your veins that makes you feel crippling symptoms. When folks ask me what chemo feel like, the best way I can describe it is that it feels like pumping poison in your veins, because you are. On each infusion day, they pump you full of steroids and anti-nausea medications prior to the chemo, so you ride high (or at least somewhat upright) on that first day. However, by the morning, those medications have worn off, leaving you to grapple with toxicity that causes persistent nausea and fatigue. You descend into darkness as the chemo goes to war against your cancer cells. You have to eat to prevent even worse nausea from setting in, but you don’t feel like eating anything, so you are fucked either way. You are also supposed to engage in light exercise (like walking) to battle the fatigue and other side effects, but of course you want more than anything to do nothing at all. You feel useless to your family, and then feel guilty when you are unable to play with your little ones, help out around the house, or even drive your kids to soccer practice.

Because our brains are so good at making associations, chemo continues to have an impact long after you are done with it. Certain smells and sounds definitely take me back (and not in a good way). The smell of alcohol wipes will still trigger nausea two years later, because they used to use these wipes to clean the skin above my port before sticking me. Certain beeps and tones mimic the sound of the IV machines they use at the cancer center and trigger momentary panic (or nausea, or both). The trauma definitely lingers.

Beyond the universal side effects of nausea and fatigue, each flavor of chemo has its own signature side effect (or two).

Oxaliplatin: The Cold Never Bothered Me Anyway (Okay, It Did…)

During my first chemo for colon cancer, I was treated with six rounds of Oxaliplatin (paired with capecitabine pills in a chemo combo platter known as XELOX or CAPOX) . Oxaliplatin’s signature side effects are extreme sensitivity to cold and peripheral neuropathy, which is the numbness and tingling of your hands and feet. The cold sensitivity got so bad that I needed gloves to take things out of the fridge, as holding something felt like gripping dry ice. Suddenly, something as simple as comforting and simple as a tall glass of ice water was off the table, as this would cause my throat to spasm and close. I was stuck drinking luke warm beverages, even on hot days. Let me tell you, there’s nothing more refreshing than hot tea on the hottest day of the year. And forget about ice cream, popsicles, or frozen yogurt. Over time, I developed a strong aversion to cold drinks, even when the cold sensitivity had actually faded. Classical conditioning in action. This led to more than one day of dehydration, as I simply didn’t want to drink anything, despite knowing that I needed to. I also had to remember to bring a sweatshirt or jacket whenever I went out, because as the temperature plunged, so did mine.

The neuropathy was equally crippling (well, technically the cold sensitivity is neuropathy, not a separate thing). It was astonishing how hard it was to perform even the most basic of tasks when you can’t feel your fingertips. Using zippers and buttoning buttons became daunting tests of fine motor prowess and mental persistence. Typing on a computer and using an iPhone were a challenge, as was engaging in any sort of physical play with my children. My neuropathy lingered for over a year after my treatment ended, leaving me fumbling to use my fingers to complete self-care tasks and help out around the house.

What helped? I found that finding something I actually loved to drink was key. Since it would be room temperature, I had to ensure that I at least liked the flavor so that I was encouraged to drink. Liquid IV powdered electrolyte mixes were my go-to, along with coconut water and the occasional gatorade. I was never a hot tea fan, but would occasionally have herbal tea or earl grey with a little honey. I bought light-weight gloves that I could use when needed, and tried to stash a sweatshirt or jacket in each vehicle to ensure that I had something on hand. A lot of folks have also engaged in prophylactic icing of their extremities during the infusion, which is supposed to reduce the severity of the ensuing neuropathy.

Irinotecan: I Run to the Can (Or Not)

When cancer was found to have spread to my liver, they decided to use a different chemo combination after my liver resection. The primary chemotherapy they are using this time is Irinotecan (again, with a capecitabine chaser in a new combo known as XELIRI). The doctors and nurses all warned me that the primary side effect of this chemo is diarrhea, which can sometimes be life-threatening due to its severity. I was instructed to start taking imodium at the first sign of diarrhea, and use a much larger dose than what it says on the box. I fortunately dodged this bullet, due in large part to the anti-nausea medications that also serve to prevent loose stools. The pendulum actually swung too hard in the other direction, leaving me with the joys of constipation to accompany my nausea and fatigue. It was especially brutal when I lacked the strength to go to the bathroom because of a combination of post-surgery muscle pain and chemo-induced fatigue. But hey, if I had to choose between uncontrollable bowel movements and a lack of bowel movements, I’d choose the latter.

What helped? Finding the optimal balance between meds that stop you from going and those that speed things up. Finding a happy medium was challenging, but Miralax mixed with Liquid IV was my tonic of choice. I also needed to get things moving before my stomach was too full, which made me feel like crap (pun intended).

Vectibix: Living the Teenage (Acne) Dream

Vectibix is not technically a chemotherapy, but deserves honorable mention for its lovely chemo-like side effect profile. It is a newer precision medicine that works by attaching to a specific protein molecule in the cancer cells and inhibiting the signals that tell the cancer to grow and multiply, causing these cells to die. This is some next generation high-tech cancer warfare shit, like a precision air-strike instead of the carpet-bombing approach that most chemotherapies take. Unfortunately there are still civilian casualties. It turns out, the same protein that is targeted in the cancer cells is also present in the cells of the skin and hair follicles. Vectibix also binds to these cells, causing skin toxicity in 90% of patients. What does this look like? Acne. Lots and lots of acne.

Not a pimple or two, but a minefield of facial blemishes that would put the worst teenage pizzaface to shame. In a cruel twist of timing, my nausea and fatigue had just lifted and I thought I was largely in the clear for the next couple of weeks until my next infusion. I must have forgotten to knock on wood, because the morning after I vocalized that I was starting to feel better, facial armageddon hit. And not just my face. There was a rash on my scalp, chest, and back too. I have never had that much acne, even on my worst day as a teenager. I dreaded face to face encounters with friends or family, and found myself facing anyway from people when I spoke to them during school pick-up or when someone visited.

Anything that made contact with my skin exacerbated things. A hat caused a breakout where it rubbed against the edges of my forehead. My pillow caused painful breakouts on my scalp. Even my shirt caused my chest to look like a minefield, even after diligently washing my chest and changing my shirt multiple times a day. Even after waging a skin battle with an oral antibiotic and prescription gels and creams, my breakout persists to the current day (two weeks after ground zero). It has largely cleared up from my nose and chin, but persists on the edges of my forehead like a cruel Mike Tyson-like acne tribal tattoo with matching speckles on my chest.

What helped? Diligently taking my medication and applying the gels and creams. Because I didn’t have a break-out for a full week after my infusion, I didn’t use any of these meds to actually prevent the initial onset of my acne. I’m more prepared this time. This round, I have started using everything prophylactically to hopefully prevent a catastrophic outbreak. Avoiding any physical activity would definitely help too, but I refuse to stay on the couch and skip out on all the fun things with my kids. It is bad enough that their dad is knocked out for a full week, so I refuse to skip out on other things. Oh, and for meetings, the Zoom “Touch Up My Appearance” option works wonders. I just make sure to crank that thing up to the max to give myself a good digital airbrushing when chatting with others.

The Darkness

With chemo, you are just as much in a mental battle as you are in a physical one. This might be a fair fight if you had all of your mental faculties at your disposal, but alas, chemo brain robs you of that too. This perpetual brain fog impacts concentration, sustained mental effort, and memory. It’s a cruel trick that slowly strips your ability to function effectively as a family member. It is easy to fall into the darkness of your mind during and after chemo, because you don’t have the energy or focus to engage with your kids, your spouse, your friends, or your job the same way that you used to. There is a pressure to stay positive (both for your sake and the sake of your family), but sometimes you don’t have the strength to do so. Depression and anxiety creep in, and sometimes the tears come out of frustration when I can’t do things that were previously so easy to do.

The mental burden to do things seems insurmountable due to your compromised ability to think, and your inability to get things done contributes to strong feelings of learned helplessness. Your motivation suffers, and you feel adrift. I'm forced to put my career on hold again, and I can't be the father or husband that I desperately want to be.

What helps? Mostly time. And sleep. And the knowledge that things will get better in a few days. I allow myself to enter the darkness and give myself permission to not feel okay. To be sad, and scared, and frustrated. Things will eventually get better. They always do.

Leaning on others helps too (especially on Erin). She reminds me that I’m battling freaking cancer, and that is enough right now. I set the bar unbelievably high for myself, and I need constant reminders that it’s okay to lower the bar significantly, or even to rip the bar off and stash it away for now.

I also grapple with the urge to compensate for my inactivity. After my initial week of being down and out, I found myself often overdoing things in an attempt to make up for lost time. I would often try to embark on a big family outing, tackle a house project, or catch up on a work task, only to crash hard and then feel guilty for not having the strength or focus to follow through. I’ve learned that slow and steady is key. I can’t be everything to everyone (or even myself), and I’ve slowly learned to let go of things. When I’m starting to feel okay, I can just sit. I can be still. I’ve learned that it’s okay to save energy for that next big battle on the horizon.