AsSeenBy Susan

An Epiphany and Closure

As my first post-treatment homework assignment from my counselor at the Cancer Center, I was asked to make a chronological list of the events of my cancer journey. To do so, I had to go back through Providence's MyChart to see where it actually all began, which as it turns out, was nearly two years ago in August, 2019. It was a routine colonoscopy where the gastroenterologist mentioned he had seen an anal lesion, and then added, "I'll see you in 10 years." 

My journey ended for me on June 23, 2021 when I had a 7-month follow-up exam by the colorectal specialist in Spokane, the same doctor who had finally diagnosed my anal cancer last August, 2020. To realize it had been nearly a two year journey surprised me but also angered me. 

Fortunately, this last time the news was good. After a physical exam viewing my anal canal in four different directions (I know, TMI), the colorectal doctor declared me free of visible lesions or tumors and gave me a positive prognosis. YAY!

And yet, this wasn't my first declaration of NED (no evidence of disease). I had had two CT scans at three weeks (12/20) and six months (4/21) post-treatment that were both clean. And a physical exam in April by my radiation oncologist rendered the same conclusion. But I still had a niggling feeling in the back of my head along with lingering depression both of which haunted my waking hours. 

At my six-month exam, my oncologist recognized my emotional state as the veil of sadness and grief suffered by many cancer survivors. And by naming it, I immediately felt validated. Physically, I felt good, almost normal. I was still swimming laps and even started taking Qigong and TRX classes at the YMCA. Then in April I began teaching my own water aerobics classes five mornings a week. But behind my aura of good health and positivity, I felt fear, sadness, and anger. A lot of anger. 

My oncologist recommended talk therapy and referred me to the social worker at the Cancer Center. I had already visited with Alex last September, shortly after my diagnosis and right before I met my two oncologists for the first time. At that time, it was a proactive step on my part to meet all the people who would be on my cancer team. 

Today, Alex is my lifeline to understand this existential threat (my cancer diagnosis) and learn how to become a cancer survivor. The chronological list of events made clear the initial missed opportunity for a timely referral or diagnosis; an unnecessary hemorrhoidectomy; and lack of urgency to meet with the colorectal specialist. 

This retrospective examination of events also changed my emotional reaction to them: from my initial relief that there were no red flags or sense of concern to outright anger that those who I trusted to have known what an anal lesion meant, didn't know zip. Instead, I was passed from one doctor to the next, completely oblivious that I had anal cancer living inside of me. 

Add to that was my eleventh-hour disqualification to a post-treatment clinical trial which left me feeling betrayed, disappointed and fearful. Looking back allowed me the perspective to view my overall cancer journey as beginning and ending with two negative events. Little wonder I was angry and depressed. 

With this positive confirmation from the colorectal specialist, I had an epiphany. It didn't happen right away, but after teaching my water aerobics class the next day, which, by the way, is a source of joy for me, I heard myself saying to a friend who had asked about my doctor visit, "I think I'm ready to put my cancer journey to the side and move forward." 

Wow! That's a huge step for me as I feel like I've been living my cancer story for what seems like forever. But now I'm ready to put it to the side. Not behind me as in forgetting about it, but no longer front and center in my life.

In addition, I will continue to be observed for five years -- every three months for the first two years, and twice a year for the remaining three years -- and live my life as a survivor and a thriver.

I will continue to educate anyone who will listen about the human papillomavirus (HPV) and its relationship to anal, cervical, and throat and neck cancers. I will also continue to urge anyone from 12 to 45 to get the Gardasil vaccination to prevent these horrific cancers.  

AsSeenBySusan

 

It's been over a month since I last wrote in this blog. It took getting an email from a friend asking if I was okay that awakened me from my post-cancer treatment, Covid-isolation induced stupor. In short, no news is indeed good news. And I'll go with that until I hear differently. Like on Friday, February 5, after I see my radiation oncologist for my first official post-chemoradiation checkup. Stay tuned.

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So what have I been doing? Not a whole lot. The first three weeks of January were filled with mental dread as I awaited the inauguration of Joe Biden and Kamala Harris. It goes without saying I felt a lightness of spirit when they both officially recited the oath of office. And I cried tears of joy watching Amanda Gorman perform her poem, for it was much more than a recitation. And isn't it a delight to have daily White House news briefs? I learn so much by watching them and realize now why the former president avoided them--he nor his co-horts ever had anything newsworthy to report.  And Anthony Fauci has become a visibly jubilant man.

And then there's Covid-19. Doug and I were fortunate to be part of the first mass vaccination clinic on January 18, coincidentally Martin Luther King day. Contrary to local conspiracy theorists, however, the clinic was not just for the congregation of the SDA church in College Place which is the neighboring town. Yes, it was the clinic site, and yes organizers sent out a mass email to all its congregants in order to get the ball rolling; but because word-of-text/phone/mouth communication spread like wildfire through the community, 850+ people received their first vaccination. 

It was not without its chaotic moments, however. When we arrived at the site at 1:20, there were already hundreds of cars parked along the streets and in the parking lots. We followed a line-up of cars that appeared to being given 3X5 cards with numbers on them.  We inched along until the car in front of us received the last card in the mid 500s, and then we were motioned along to  find another card hander-outer person from whom we received numbers 834 and 835.  Once  the process started at 2:00, they began by calling groups of 20 at a time. It was going to be a long wait. 

But truth be told, we had nothing better to do, so we dug in for the long wait. We amused ourselves by listening to the local church radio station for frequent updates, but that eventually drained the car battery. The arrival of AAA proved to be an exciting interlude. And apparently we were not alone as several others used his jump-start services, too. We also were able to exchange our numbers in the 800s for new numbers in the mid 700s, so we knew we would not be the very last to be vaccinated. And indeed, we were called by 6:00 and back home by 6:30 with our official vaccination cards in hand. And now we are awaiting our second dose scheduled for next Monday, February 8.

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I've also been able to get my body out of bed and my butt out of my chair each weekday because the YMCA has opened up in-person classes albeit in limited numbers. So, each M-W-F I swim laps and do water exercises, and beginning February 1, I get to share a lane with my buddy Doug as he does his water exercises. Then on T-Th, I take QiGong class followed by Balance and Strength. Honestly, I'm not enamored by either class and have to talk myself through each one. (I know it's me and not a reflection of the instructors.) I acknowledge I'm not a cerebral exerciser, so practices like Yoga and QiGong are not intuitive to me. But I know that I'm not as strong as I used to be, and my balance is sketchy. Plus, I'm not good at either of them, and I don't like doing things I'm not good at. And breathing through the required mask makes the conscious deep breaths-in and exhales-out claustrophobic. But, and here comes the reframing that I've learned to do, I am grateful that I feel well enough to exercise at all, and I am grateful that the YMCA has been able to stay open and schedule so many classes. YAY!

Oh, and there's the weekly visit to my pelvic floor therapist. The good news is I have been told that I have strong pelvic floor and rectal muscles and show no signs of stenosis or radiation trauma. I have also learned a lot about bowel movements, the muscles involved, and how to consciously relax or engage those muscles. Who knew? 

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Otherwise, I do nothing or have done nothing of consequence. In the last year I  have baked no bread, pies, cakes or cookies. Nor have I learned to cook anything new and still rely on my old standards when forced to cook dinner. I have not Marie Kondo'd anything despite having my belongings divided between two houses, one garage, and two large garden sheds. I have not finished the cross-stitch or needlepoint I began last century, nor learned to quilt, crochet or tat. I don't do puzzles, crossword or jigsaw. And I read less than I care to admit. I vacuum only when I have to, dust rarely, and clean up Zoey's dog poop more than I like.  My only outings are to the Y daily, and to the grocery store and pelvic floor therapist weekly. 

I don't know what all this says about me other than I'm unmotivated, lazy, and without purpose right now. Is this my reverse version of a trauma response and fear-based distraction? Or is it simply the result of post-cancer scare and/or Covid-19 induced ennui? Beats me.  

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