Cancer and Countdowns
I have never been one to count-down days unless it is to celebrate something very special or go on a vacation. I have been the kind of person that is fairly comfortable with change whether it be the end of something or the start of something new. Life continue to move on even if I count-down the days, months, or years. What I try very hard to do is to live in the moment. I focus hard on the job at hand, hoping that my presence in the moment makes it memorable or more real. Don’t get me wrong, I have goals, I want to have good outcomes for my life, work, personal relationships etc. I guess I have been a ‘more-about-the-journey’ kind of person rather than a ‘destination-person’, until that one fateful fall day in November 2015.
Imagine you are in a doctor’s office, one you never planned to be in in the first place, as a wet stormy Seattle winter brewing outside the window.
You hear the doctor (surgeon) say,
“It’ll be about a year before we can really say if this has been successful.”
Then he goes on to say,
“It will be at least 12 months until you feel normal again, but it will be a very different normal. You will endure 5.5 weeks of radiation and oral chemo, 8-10 weeks to recover before surgery. Surgery will take about 5-10 hours with a stay in the hospital for anywhere from 3-10 days. After that you will recover for 2 weeks then start 9 rounds of IV chemo, every other week, which takes about 6-8 hours to deliver in the Swedish Cancer clinic. You will go home with a pump that delivers chemo for an additional 48 hours and return to the clinic for a disconnect 2 days later. Barring no infection (HA!, we all know that didn’t happen) you should have another surgery in the early fall and be done with this part of the cancer saga around Thanksgiving 2016. After that, if all goes well you should estimate about five years of follow-up testing after that until we will be able to say whether or not you are cancer free.”
Holy countdowns Batman. That is a LOT of countdowns to get through. What are countdowns really? Why do we rely so heavily on them? Are they just parameters to use support our eager anticipation of an event? A way to ease the excitement? Are they guidelines to focus on so that the daunting tasks of everyday turmoil and chaos can be seen in small increments instead of huge overwhelming chunks? Are they another coping mechanism provided to help navigate the unknown? Maybe they are all of the above… And if these countdowns are ways to ease the chaos during a difficult time maybe the journey becomes more of a struggle to stay present in and the focus is placed on the destination. I feel like this is what has happened at least while dealing with this slog. All I want is to be at the end, the “new normal” phase.
Needless to say, we are still in the midst of countdowns but are happy to report to be more than halfway through. With only 1 more IV chemo to go we are starting to feel like there is some ‘normal’ just around the corner. There is still another surgery and many tests that Kaycee will have to endure, but the bulk of treatment is over, thank God!
As I have played the main caregiver role in this cancer countdown I have had to find some ways to cope with the countdowns. The role of caregiver is a hard one. B.C. (before cancer) I was happily a caregiver to my children, my students, my husband, my friends. This is what we do in life, we care for those we love. I knew my job and how to do it, most of the time and through it all I had the support of Kaycee. But when Kaycee unwittingly switched roles from partner in all this to patient, my main support system dropped away. He no longer had the physical or mental stamina to be the active supportive partner that he was (and any of you who know Kaycee already understand he was an equal partner in the life-force that is our family). His only job now was to beat cancer. Though he will hate that I am saying this, his main role became that of patient, a hard pill for anyone to swallow (pun intended) but especially someone so vital and strong. I had to figure out how to now add to my job description, nurse to my husband. It is a hard role to participate in. I don’t mean that I couldn’t or didn’t want to do it but it is hard to distance your heart enough from the patient (your husband) to provide care without emotional attachment that is often necessary. A clear head was needed. My heart was so connected to Kaycee, my husband, that I had to find a way to harness my emotions so I could level headedly engage with the job of caring for Kaycee, the patient.
Let me explain better…Often, over the last year I found I was drowning in an emotional storm, unable to see the surface of the water. I was fragile and holding life together with what felt like tissue paper and staples. To say it was overwhelming seems an understatement. It made all my other chosen life roles; mother, teacher, friend, suffer a bit. Over the summer, I had 2+ months or about 63 days, to find things that made me feel good again, that had nothing to do with caring for others. Another countdown, I know. I realized I had to start caring for myself. This is a hard thing to admit but, I knew I needed to find a way harness my emotions and get to a place of calm. I have found a few things that make me happy, feel good in my soul and warm my heart. I started writing more, taking voice lesson and bought myself a ukulele and am teaching myself to play. These things became my therapy, my self-care program. Now, whenever I need a shot of soul-strengthening-goodness I head for my computer to write or grab my ukulele. I countdown the days for my voice lessons and relish each of the 45 minutes spent trying to learn to sing (with abandon). I feel like I have learned to look for the self-care life raft before going under the emotional waters. But I have done so with the support of countdowns.
So through countdowns I am trying to find a balance between the journey and the destination. Though we are all looking forward to the destination of Kaycee’s cancer journey and the day we can say he is cancer-free, I don’t want to get so lost in the counting-down that I forget to see the moments that are what makes the destination so sweet. Over the last few days I have seen many people posting pictures of their “babies” going off to college, driving away from the hearts, minds and souls they have cared for all these years. My heart is filled with awe and wonder for both the parents and the kids as they have to learn to find a new way to balance their new journey/destination countdowns. Our baby is only 2 short years from this same path and I want to enjoy every moment until then. See what I just did there… in one short sentence countdowns and small moments became entwined. I guess that is just how it is.
As I write this I am counting down the hours until have students in my room, at the moment less than 48… so I am enjoying the sway of the trees and the dappled sunshine of my backyard. Once school starts life gets even more complicated. I will need to remember self-care in order to better care for all those I love. I guess I am coming to realize is that finding the balance in life is what allows us to float in the calming sea. Countdowns are only numbers to guide us to the destination, a way to organize the chaos. Balance is the key to enjoy the moments within the chaos. Okay, now only 46 hours (yippee)… and so it goes.