Chasing Treatment or Chasing Life

The last few days have been packed full with oncology visits, rounds, nurses taking vitals and evaluating Craig's breathing, palliative care meetings, and extremely sobering conversations. One week ago, Dr. Flaig noted that there was really only one viable treatment option left - Sutent - that Craig COULD try, albeit on a half dose given the greater toxicity of Sutent. He stated that Sutent was a possibility but it would only carry a ~20% chance of lending some benefit to Craig's process, and it was the harshest of treatments that Craig would try. In the end, we were likely looking at a "few long weeks". Though we all know that prognoses and predictions are not very useful, they did give Craig an idea of how acute his condition is when it seemed that it had not quite registered. Diane, Jill, Emily and I talked with Craig and how Sutent might fit within his stated goals of not wandering down the path of living life by hospital visits and doctor's appointments, but rather through fulfilling some of his true wants/needs/wishes. Last Monday, Craig decided he wanted a small break from treatment to recover but wanted to pursue Sutent to the extent it was helping and not hurting him and not taking from him the opportunity to really "live".

It was a tearful appointment, yet we left Monday's appointment with a renewed determination and zest to help bring the world to Craig, bringing life to him in a meaningful way so that he still has entertainment and enjoyment rather than a "monochromatic" life consumed by cancer. The night before the Dr. F appointment, we took him to see the latest Batman movie, and the nights following we filled with one activity after the other. The shifting energy was palpable and even altered how Craig referred to the passing days, replacing names of days with event titles. Tuesday became "Rockies Night", when we dressed up in Rockies attire and hit the stadium to watch America's favorite pastime -- baseball. Wednesday transformed into "Woody and Georgia Night", where we were entertained by Georgia and Woody's equally brilliant culinary skills and always enjoyable conversation. Thursday was double-billed as the "Day of Uno", when Craig skunked Emily in a rousing game of Uno, and "Dixon's Night", where we went to celebrate Mom's birthday (which I will talk about in more detail in a dedicated post). Friday would have been "Movie Day" with his friends, Steph and Steve, but it is now referred to as the "Pneumonia Moment", instead. Sunday was, of course, the "Benefit Concert Night". Since then, the colorful titles have faded and days seem to blur into one another apart from watching random movies and taking laps around the hallways.

The days in between have been admittedly hard, filled with emotional moments of finalizing living wills, talking about how hard it is living in a timeframe, and, the worst spectator sport of all, watching Craig come to terms with the realization that things are happening faster than expected and he will one day pass away from his cancer. It's an impossible reality I still have not fully grasped. How do you lose your Mom and your only brother...and, for Craig, how do you lose your Mom, as well as your own life in only a few months time? Such a f&*^ed up situation.

This Thursday would have been the target day for re-evaluating Craig's liver enzymes to determine if taking Sutent was still a safe and viable option. That milestone was moved forward a few days. I was with him yesterday morning when we learned from the attending doctor that his enzymes are passed the threshold for safely taking Sutent even at a half dose. Craig's protein levels are quite low indicating that despite the TPN used for nourishment, the supplemental nutrition can't keep up with the pace of cancer and he can no longer maintain adequate nutrition. This along with the poor liver function made it clear that treatment would do more harm than good and that seeking a quality life -- while there is still life left -- is priority.

Courage manifests in so many ways during one's trial with cancer - courage to defy cancer through seeking treatment; courage to withstand the side effects and stand beside "new normals" and new ways of living; courage to investigate new options when standard protocols are no longer effective; and, when "that" reality hits, the courage to shift energy from 'chasing treatment' to 'chasing life' in the time that is remaining. It is a courage I saw in Mom, and see in Craig.

Dr. Flaig paid a visit later in the afternoon and eloquently confirmed the attending doctor's earlier opinion. To talk about life and the end of life was sobering and grim.  But it was a conversation Craig participated in with the same grace and courage he's shown throughout. I don't know how he does it, or Mom did it.... As I told him, if I have a son (or daughter for that matter), I'd hope he'd be something like Craig.

We are to comfort care measures, now.  The tenor is one of wellness and symptom management, trying to give Craig the comfort and strength necessary to live well in the time he has left. We will treat symptoms of pain and nausea and no longer specifically target the cancer - come what may.

I'm reminded of lyrics from a Verve song later covered by Ben Harper. They came to mind during the end of Mom's process and now again with Craig: "Now the drugs don't work, they only make you worse but I know I'll see your face again".

Now, we are chasing the hell out of life....

~E