Joy — and the Lack Thereof

I was born into a nice life. My family of origin was stable and supportive. We didn’t have extra money for things like meals out or decent cars, but our rambling house in the New Jersey woods was ours, and financial concerns rarely threatened in any way. Intellectual curiosity and educational attainment were encouraged by my professorial parents, but in a 1970s/80s low-key way, not today’s college preparatory cyclone. I made good friends with good people at every stage of life, and almost all of them are still in regular contact. Perhaps most important of all, I had the good fortune of being born with an innately sunny disposition. Yes, I can get grouchy and short in safe spaces like my office and with my family, but for the most part, it’s easy for me to find both small pleasures and outright joy in the act of living. What a gift! I never felt it more than in the weeks before starting my cancer treatment, with the weight of the imminent suffering adding to the attention I paid to small details; every step down the soft carpet of our hallway, each sip of coffee, every meal with my family, all my interactions with patients and friends — never had the simple joys of living been so easy to access.

Enter chemoradiation. Experiencing joy, even pleasure, came to a crashing halt. I wasn’t depressed; for a couple mercifully brief episodes in early adulthood I’ve experienced that feeling of anhedonia, the loss of interest in living, which defines depression, and I don’t know how I would relate to my many patients who struggle with depression if not for those times. No, my mood has been pretty solid. This is different, more like the color has been sucked out of life.

I’d describe it like this: have you ever had a terrible cold, and after a day or two of lying around in bed, sinuses aching, cough annoying, cytokines swirling, everything around you that once could be appreciated now seems hopelessly drab? The curtains you’ve loved since carefully selecting them at a remarkable price point from Bed, Bath, and Beyond? Awful. That lavender cream paint on the walls which always brought you back to springtime in Provence? Gauche. The sylvan view out the window? The neighbors really need to trim their side of the hedges.

I don’t know if that is the cytokines themselves, blocking the normal pathways to our pleasure centers that our thoughts might take; or if this is purely on a psychological level, the development of negative associations with all the details of the place where we suffer when ill.

All I know is that my joy had exited the building. I always appreciate fireplaces, but I didn’t even like to see the one in our house blazing away. The sheltering cedar and hemlock surrounding our backyard were just… there. That perfect, mainland Christmas tree the girls were so excited about? Meh — and I love Christmas trees.

My joy was sapped.

Then things got worse, the night before my second cisplatin infusion. I awoke around 2AM, suddenly aware that I was struggling to breathe. This was not entirely out of the blue - I had noticed last month when I got my first CT scan that tilting my head back with full neck extension led to my tumor-filled tongue dropping into my airway, and totally occluding it. Quite the surprise! I’ve had to manage my radiation sessions with some awareness towards the position of my tongue so I can, y’know, continue to breathe through them. I can only imagine how rough this set-up would be for a very claustrophobic person who is also intermittently collapsing their airway:

Anyway, my doctors did not seem either overly concerned or interested about this phenomenon, so I was just relieved it was not affecting my excellent sleep in the slightest. Until it did. The rest of that Tuesday night, every time I started to drift off… GAACK! Airway collapsed. Of course, my tired mind joined in the fun, starting to wonder things like: “Does this mean my tumor is having some kind of paradoxical GROWTH from my chemoradiation?” and “Will I need CPAP, or surgery, or GASP! a tracheotomy tube???” I’m not saying this was rational; just the musings of a cancer patient at 3 AM.

I padded off to my cisplatin infusion day in a rotten state, as anxious as I’ve been in this whole process. This was not the Eye of the Tiger I was looking for to begin cisplatin infusion #2.

I decided I needed to try a little harder to shift from Whiner Mentality to Warrior Mentality. A kindly ENT resident who had done me the service of looking through my CT images (and even printing them out! Doctors, there is no substitute for preparation in easing the worried minds of our patients!) reassured me that it was a bit early yet for much tumor response, but there was likely some inflammation around the base of my tongue that was tightening up my airway. We agreed that the jolt of steroids I would get in my IV before the cisplatin might coincidentally be just what I needed.

It turns out it was. I went to bed that night at 10PM on my left side; and woke up there 9 hours later, having not budged, with a barred owl hooting a morning alarm in our nearby pocket of forest.

I also woke up with my joy back. The fire was warm and cozy. The forest, northwest perfection. Our Christmas tree clearly the family’s finest ever. The hike through the park adjoining our home finally felt as lovely as it did when I first came here weeks before treatment. Our family sat out on the driftwood at the park beach, beside the vast Pugent Sound, in the quiet of the settling dusk, and everything was perfect again.

Those favoring biology over psychology could point to the dexamethasone taming the cytokines unleashed by the incredibly inflammatory process of deliberately destabilizing cellular DNA. That could be it.

However, around the same time my day began to turn around, also roughly when the dexamethasone dripped into my left arm, I had a remarkable conversation with a patient. She was diagnosed with cancer a few months before me, and I had felt terrible about not contacting her to check in how her treatment was going since my own diagnosis had led to an overwhelming to-do list. Our cancers, and our relatively young ages, are what we share; the comparison gets tenuous beyond that. In place of the almost cloying stability of my life, she had known abuse as a child, chaotic familial relations, and bank accounts prone to draining by creditors and criminals. She was grinding through week after week of chemotherapy, alone in her small housing unit, barely able to get help from anyone. Thinking it over, I felt downright disgusted with myself for neglecting her these past two months; I have moved myself and my loving family into a beautiful home, with more friends around us than we have time to see, and a medical team that answers my every concern within hours. How could I leave her off on her own for so long?

So, I called her. I mentioned how the cisplatin running into my arm gave us a certain bond. How I can understand much better now the brutal combination of discomfort and uncertainty that cancer brings. She didn’t grasp the reference; she never saw the emails I had sent my patients about my throat cancer.

I let her know what was happening in my life. Immediately she took the most concerned tone, as if the only matter of interest between us was my cancer. “I feel terrible bothering you about my problems” and “I’ll just call my cancer doctor if I need anything so you can focus on healing.” I insisted I wanted to be available to help her, too, especially if she was having a hard time reaching her oncology team; she would have none of it.

I can’t say exactly what touched me so much about this exchange. I think having one of my most vulnerable patients echo the sentiments of my less vulnerable patients, friends, and family members brought home the sincerity of the message I keep receiving: “this is your time, do what you need, ask for help, we have your back.”

As a people-pleaser, I am more comfortable doing favors than asking for them. Only now am I realizing that, to fully participate in a community, it’s essential to receive support, too.

I left that conversation with my fine, steroid-enhanced mood. It lasted for days. Friends came to town from California for the New Years weekend, and I had as sweet a day in the copious Cascade snow as I can ever remember.

OK, the next day I finally started to get signs of the dreaded mucositis (inflammation and break down of the mucosal lining of the mouth) that afflicts almost everyone who undergoes this style of treatment. Some ulcerations on my tongue made speaking uncomfortable, and eating almost unbearable. I’ll admit it; it’s hard to find joy when in pain compounded by worry (“OMG I should not have made that Mike Tyson comparison last week because I am feeling decidedly not tough enough to keep eating like this for another 2 months”).

Maybe it was yesterday’s dexamethasone-enriched cisplatin infusion (#3 of 7!), but I’m definitely a bit better today. Eating anything other than fatty dairy is dismal, like someone is scratching the back of my throat with 200 grit sandpaper, but I can do it. I’m enjoying life at this moment.

The harder this experience gets, I hope it teaches me that I can let go of the need for joy and pleasure to embrace my mission in life and contribute to the world around me. I’m not there yet. Joy is still a much-sought companion, and I celebrate every one of her visits.