I awoke with my heart racing. I squeezed hard, like doing an isometric exercise, or like when one is hurrying the big deed in the bathroom. It usually does the trick for me to revert the heart from being in afib back to normal rhythm. Didn’t work. Repeat three more times. Now I’m annoyed at myself for wanting to make myself poop in bed. I tell myself to get up for a slow walk. Too fast, you middle-aged eager beaver. Immediate sensations of being light headed. Orthostatic hypotension. I lie back down sideways on the pillow, listening to the speeding pops of heartbeats echoing in my ear. And just as suddenly the symptoms were felt, they stop within a minute. Slowing to irregular, ectopic beats.

Why in the world did I stay up late again? It isn’t going to help her if I don’t take good care of myself too. Worse if I have a stroke before her inevitability, and the caregiver roles reverse. That wouldn’t be good.

It’s the end of September. Restless in my inability to return to sleep, I wander over to the living room, grab my laptop and sit back into bed. Now that treatment has started for Annie, I have been eager to understand the parameters by which we can maximize quality of life, and symptoms to be aware of. Flipping the virtual pages of another treatment progression paper on the touchscreen, self rebuke voices itself in the mind. What am I doing? I’m not a doctor. Not even smart enough to be one. So why keep reading cancer or palliative treatment papers and texts? Why even wander down the branches of oncoimmunology trial options? To what end? What am I grasping for? Is the search for understanding and accountability simply a scapegoat of denial and fear?

A few days prior to this, we went to the hospital for her second monthly set of shots, and follow up appointments. Palbociclib should be available for her in a few weeks, before the end of October. The last item on her “first line” treatment. From what we’re told, she will be the first person outside of clinical trials here in Korea to access it. It’s already in use back in the States, and her oncologist here was involved in the trials here in Korea. I left the hospital foggy, feeling un-sharp; realizing I came unprepared. In my laziness, or smugness of having prepared two weeks earlier, I did not bring notes. So I forgot most of the questions I wanted to ask, goals we wanted to share with the oncologists, plus questions about exercise and mobility. I felt heart heavy. My role is the advocate, not the seat warmer.

Nevertheless, all the initial scrambling seems to be over. October begins. With just monthly visits and general administrative hassles, we can start looking forward. Towards some regularity in the days, not unlike the regular rhythm of heartbeats. To a new normal.

On the first of October, a Saturday, we went to the gym together for the first time in a while. The green light for not wearing the brace any longer was still two weeks away. So yes, we broke the rules for a moment. She would, after all, just walk on the treadmill, wearing a seahawks t-shirt under the brace. With poor reading comprehension, we were laughing at our flummoxed attempts to turn on the TV/Cable in front of the treadmill. A kind gentleman, whom we’ve come to know as JP, noticed and said hello. He helped us with the controls, laughing, “It should be simple. We still have a long way to go”. I wondered if he was an executive at one of the electronics companies, he had that vibe. He was surprised that we had no kids but were staying in the neighborhood. He insisted that the area had “good luck” for having kids so we should make babies while in Korea. Anyways, thanks to him, we can now watch English programs. And only while we’re on the treadmill.

The days flew by. Pain reduced, she stopped taking pain meds, and the requirement for wearing the brace would be over soon. She started reading a new book, a non-cancer related one; “Nothing to Envy: Ordinary Lives in North Korea”. I emailed friends, worked through organizing piles of paper, and found the time to make a follow up consult with a cardiologist for myself. We started to consider an overnight weekend trip to a national park in Korea to see the colors, or have some easy walks outdoors. We entertained the possibility of staying on in Korea, especially since she liked the oncologist; and perhaps me joining the same company too.

We started a rhythm of hitting up the gym together every two days. I pondered carving out a schedule to visit a climbing gym, to put some ugly calluses back on my now smooth toes. We also watched some movies while eating a meal together, like tv-dinner habits of years ago. We both enjoyed “Hunt for the Wilderpeople”.

The middle of October approached. And we would soon take a few days to visit her family in Taiwan, and to activate her national health insurance as a future backup.

She brushed her abdomen with her hand, just under the ribs, bending over a little and grimaced. Pain. The specter of cancer life throws a spear of reminder; that it cannot be ignored. And we must mentally parry back.

And of course, a series of questions bubble up. The wax and wane of cancer pain. What is significant? When do you ask? When is it a concern, and when is it not? Is it simply a matter of pain control, or some indirect pain from the tumors in the spine? Pain, a whole different topic. She went back on the pain meds. The symptoms do not subside as we depart for Taipei.

Ten days later, the abdominal pain fades, replaced by the old pains. Radiating on the side, and in the back close to the T4-6 area.

It is easy to forget. Her treatments are palliative. She teared up trying to get up, after lying down on a yoga mat on the ground. Her trunk muscles weak from wearing a brace for the past months. The new normal didn’t last long, did it? But then again, all this isn’t normal life. It is simply what is. A new reality. Actuality. Like the ectopic beats of my heart, this new reality isn’t always a regular or predictable path.

“Could have been” became a catchphrase for a week. We had considered, for a few years now, to experience living in another country; probably in Asia to be closer to our aging parents so as to visit them more often. Thus when Korea came up as an opportunity, the inklings became plans that naturally began falling into place. A new language to learn, new culture to understand, plus accessibility to Taiwan and Singapore. Could have been. We look at the granite mountains and talk about the hikes, adventures and climbs in Korea we had envisioned. Could have been. We talked about how we’d have furnished the apartment, with guestrooms to host visiting friends. It could have been.

Oh, we know it can still be. We can choose to stay and operate that way, albeit with some physical activity exceptions. But not knowing if one is a two year median statistic or a ten year exception can change, or easily bias, decision making. Heeding the call of home in the Northwest will allow us to cherish friendships we already have, to more easily handle any big events (such as a compression fractures in the spine). Projecting forward, is regret minimization the decision model to use? Or one of joy maximization? Are they mutually exclusive? And would it be minimizing long-term or short-term regret? Neither necessarily decreases risk, which is alright, if one gains quality and joy. To a certain extent, leaving now feels like intentional failure. We’re both okay with failure, but intentional failure can feel foreign. Sometimes though, it may be prudent.

The “what would you think on your deathbed” cliché is well, a cliché. What would likely happen instead would be some stage of progression whereby the options of mobility are no longer there. Metaphorically, if you knew you would lose the use of your arms, legs and bowel control someday, what would you do today? Would your daily life be different if it was to occur in six months, two years, or ten?

We’re not desiring for something that “should have been”. It’s okay. Reflection and introspection have their days in our lives. At some point, the cancer will become more adept at resisting treatment; bringing its specter to deliver more pain. So just as morning mist in autumn gives way to clear crisp air as the sun rises, it is time to stop ruminating. And a time to chart a course, and to be as present as possible. Facing the actualities of cancer life.

She is easy going. Accepting. No giant big goals. Happy with our options. She is naturally able to be more present than I. She might be accepting and ready for what may be. But my heart is not. And projecting forward, I do not know when it will ever be.

Courage, dear heart.
~ C.S. Lewis, The Voyage of the Dawn Trader