Monthly Archives: January 2020

The Audacity of Hope

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 if what, cancer?

Happy new year! It is January 6, and I am staring out my window trying not to think about getting the results of my latest scan this afternoon. I’m exhausted, and I have been exhausted since October. Is this a sign of an impending cancer diagnosis? Am I finally done for? Probably not, because I live in central Texas, and each year at this time our skies are flooded with cedar pollen, leaving most people feeling a little fatigued and fluish.  And isn’t almost everyone fried after the holidays? This is what January is supposed to feel like, which is why most people cleanse through at least the first half of the month. However, that nagging voice in the back of my head is being a complete punk at present, and won’t stop whispering, “what if?” With minimal fanfare, I quietly pumped my fist in the air through the last days of December in celebration of finally going a full year without having anesthesia pushed into my veins, or experiencing the pleasure of once again rehabilitating my body. Unfortunately, I did it with the sneaking suspicion that there is something nefarious waiting on the other side of this scan, even though there most likely is not. “What if” what, cancer? Freakin’ punk.

The beauty of where I currently find myself, is that while I am nervous to hear what my doctor has to say, I’m not afraid of it. In looking back on the last 10 years, it has been beautiful, devastating, and wild. I got divorced, I got Brazil, I got the most amazing group of friends, I got cancer, I got to experience real, unexpected loss, and I got pulverized repeatedly. Multiple jabs right in the face, only to feel a more intense sense of well being than I have ever experienced in my life. What if what, cancer?

We put so much effort into cancer prevention in this world that is becoming more and more carcinogenic everyday. We talk about cancer prevention because we love to live under the delusion that just by doing everything right, we can prevent it. There are too many cancer patients who were living otherwise healthy lives for this to be a reasonable expectation. I get to live from the privileged position of knowing that even if you do many things right, it still might come for you, so I no longer treat my body well because I’m afraid of what will happen if I don’t, but now treat my body well because it feels better when I do. My jeans are a little tighter, and I’m a lot happier. Fear doesn’t get drive this train. What if what, cancer?

Financial toxicity? Living it, and doing okay, thanks to my parents, but still, I have learned how to make a dollar stretch, so as I’m working my way back up, every single dime becomes gold bullion. In middle age, I have had the opportunity to realize the value of a dollar, and the value of using those dollars to help people in need. Worst case scenario, and I can’t afford to live on my own anymore? Fuck it, I rent my place out, and  move in with my sister and her family. I love those people, and they put up with me joyfully! What if what, cancer?

If it’s everywhere? I spent most of 2019 putting a lot of thought into how I want to live. I have become actively, radically kind and generous with myself, which has been very helpful in returning me to my natural state of being radically kind and generous with others. I’m entering this year super excited about pouring energy into creative pursuits, and opening my eyes to all the awe the cosmos would like to put in my path. Translated? I’m feeling generally peaceful, and pretty good about things. What if what, cancer?

No matter what my doctor says later today, for the first time, I feel like it won’t really change the foundation of how I live. Early on I was traumatized that my lifestyle was so drastically clipped, and afterward, always furious that my efforts to dig myself out from under the detritus of this stupid disease were once again curtailed. For a while, I was still focused on the old things that I thought were important. As the last decade comes to a close, I find myself not so much changed in my position, but in my wisdom. The last ten years have taught me that I am not only tenacious, but resilient, and able to take a hit and still come out loving, which has been the most glorious realization of them all. Although I’m reasonably sure it’s allergies, what if fucking what, cancer?