President Obama stole the title of my cancer memoir, or at least that’s the way I feel today. Give me a year, and I’m sure I will have moved on to another phase of my healing process, or grieving process, as I’ve come to believe the steps are pretty much the same. Not only did my last CT scan come back clean, but my oncologist pushed my future scans out to every four months. I take this as confirmation that he is beginning to believe I might be alright, after all. While I am very pleased, I remain cautiously optimistic and dubiously perched atop my NED (no evidence of disease) status. Why dubiously? Because I have gotten overconfident in the past, and would prefer not to be caught off guard again, even though if something comes up, I will undoubtedly be caught off guard because I’m feeling hopeful. Oh, the audacity of hope.
Hope is where you start making plans, and stop holding your breath. Hope is where you allow yourself to take chances. Hope is the space where you put in extra effort, because with hope comes a little bit of belief. Over two years ago, my jaw began popping when I ate, pop, pop, pop, pop. I started to call it a click, but such a tiny noise doesn’t do the sound justice. It still pops, because dental stuff is horrendously expensive, but the first time I saw my dentist after it began, he asked if I was having jaw soreness because he saw evidence of “extreme clinching.” After this, I would wake up in the middle of the night, and find that I could barely release the tension in my jaw without pliers. I was in survival mode by day, and translating it to my mouth by night, holding tight to the life raft by my teeth, apparently. Hope, to me, feels like the place where you let go of the life raft (even if you’re staying near), and start to paddle out on your own. Hope is where you don’t peak cautiously around every corner in fear of getting a concrete pie in the face.
2019 was the first year since 2015 I did not have a major surgery. For some, numbers such as these would be child’s play, because many people are dealing with far larger troubles in the world than I am, but that’s their story. Knock on wood, 2020 will become the year we recall they began pushing my scans out further and further. It is extremely challenging to be hopeful when you’re getting scanned every three months. Even when it’s not there, it’s always right behind you, or looming in the distance. It feels like the potential for bad news is always skulking about in the periphery. Reality check, bad news is always skulking in the periphery, but so is good news. The problem with survival mode is that it has you on high alert for the bad, sitting around rabbit like, always watchful, forever startled. There’s a reason they hold you at three months, and the reason is that the likelihood of your cancer returning is significant enough to warrant concern, so it seems fair to quietly be on high alert. Except that you have high alert on double secret probation, because you don’t really want anyone to know, including yourself, that you are still freaked out that it will come back, even though you know that if it does you will do the necessary. You’re a proven survivor, we already know this. Extending the period between scans, even if it’s only by one month, signals hope, and if Dr. Yorio is comfortable being a little audacious, so am I.
Hope is buoyant. Hope is optimistic, cheerful, confident, expectant, and promising, in contrast to its predecessor, Survival. Hope is on the other side of survival. Survival is the best you can expect when your medicine is barbaric, or if there were less therapies available to treat the side effects of cancer treatment. Survival is the best you can expect when we basically cut the cord from cancer patient to ongoing rehabilitative services following an episode of care. From a healthcare perspective, we have advanced far beyond not being able to address many common side effects, and need to begin treating cancer patients that way. Survival is no longer the end goal, because we can do better, and don’t call me a “thriver”. It’s reductive, and super condescending, although all cancer patients have their preferences in language, so I in no way speak for anyone but myself. Hope is audacious when you’ve been knocked on your tush repeatedly. While survival can put one foot in front of the other, hope helps you to summit the peak with a disco ball on your back.
I saw a post yesterday by a wonder of a woman who was treated for colon cancer 16 years ago. She is the founder of an organization that is committed to awareness and screenings in minority and medically underserved communities, and works tirelessly to raise awareness regarding disparities in healthcare. Her quote, “For 16yrs, I’ve been surviving & not living because I was told I couldn’t do this or that.” This from a woman who is a huge patient advocate and voice in the colorectal cancer world. If she feels as though she’s been “surviving and not living” for the past 16 years, it tells me we are missing something huge in cancer rehabilitation.
It is time we all started to act as though survival is only a step in cancer treatment. You survived, for now (because we all know that you only know you have survived cancer when something else kills you first), but what is it cancer patients need to feel as though they can live? Is it financial counseling, pelvic floor therapy, mental health services, a great exercise program, or perhaps a nutritionist? It is time to stop behaving as though finishing active treatment is the end of cancer care needs, because if we have our patients trapped living in survival it makes it difficult to get to hope.
What a Glorious Mess 