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.

*     *     *     *     *

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.

*     *     *     *     *

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? 

*     *     *     *     *

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.  

*     *     *     *     *

AsSeenBySusan

Finding the Silver Lining

 

It’s hard for me to remember anything good about the year 2020. As I recall, I was sick as a dog on December 31, 2019 while in Varanasi, India, and I missed touring the funeral ghats along the Ganges along with all the merriment of the turn-of-the-year celebration with my Overseas Adventure Travel compadres. Fortunately, however, the worst effects were short-lived, and I was able to continue with the 5-day trip extension to the south of India during the first five days of January. But being sick and traveling had taken its toll, and once back home I began 2020 with low energy, a disinterest in all food, and a lingering cough that plagued me for weeks. Then the coronavirus hit the world stage. 

While neither Doug nor I consider ourselves social butterflies, we, nevertheless, folded our tiny social wings and dutifully followed the stay-at-home orders. As summer arrived, my saving grace was that Memorial Pool was allowed to open by advance reservation, and I took full advantage. In fact, it became my Happy Place until it closed near the end of August, just about the same time I received my cancer diagnosis. But as good fortune would have it, the pool at the YMCA was allowed to open for reserved lap swimming, so I was able to take out my growing anxiety, frustration, and fear in the water. It was not only my happy place but also became my comfortable and safe space. Throughout my entire seven week chemoradiation treatment, I missed only one week of swimming. And now in my eighth week of recovery, I have missed only one day. I can easily say being in the pool is what has allowed me to keep moving forward. 

*     *     *     *     *

But there is more. Much more. In the midst of all the chaos and uncertainty of my cancer journey, the crazy election, and the world pandemic, something wonderful happened. I was loved, and cared for, and fed, both physically and emotionally as I've never experienced before.

It was YOU – my friends, my family, and my acquaintances. And in turn this I-can-do-it-myself 71-year old was truly humbled.

YOU were there for me. The number of cards and texts and emails and flowers with greetings, good wishes, prayers and offers of help were both overwhelming and a huge surprise. And the Meal Train!  The gifts of food sustained Doug and me during my treatment and recovery when shopping, cooking and eating were the last things on my mind. It all has been incredible and unexpected but oh so comforting and uplifting. 

So my New Year's message to you is this: 

• Thanks you for remembering me.

• Thank you for your kindness and thoughtfulness.

• Thank you for being in my life when I needed your support.

• Thank you for being the great human beings that you are.

Cheers to 2021 and to Friendship

“At times, our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us.” – Albert Schweitzer

AsSeenBySusan

 This Is What Scares Me Most

NOTE: I did NOT write this piece. The link to its source is below: 

https://www.cancerpal.co.uk/post/what-it-s-really-like-to-receive-a-cancer-diagnosis?fbclid=IwAR0opt7uuf4hcmYjSk-DftrLClABOptTjVea8_LKS2rykGNa7lb-4F35nY4  

I think this is an important piece to share because now that I am a person with anal cancer, it is part of my reality. Like it or not.

Unlike the author, however, I am at a different point in my journey, being in recovery/healing after my standard treatment of chemoradiation and now waiting for my first six-month check up to see if I am NEDS, no evidence of disease. That's what every anal cancer patient hopes for since anal cancer is supposedly treatable and even curable. But as I am slowly learning, it doesn't always work out that way.  

I try not to be a negative person but neither am I a Pollyanna. I consider myself a realist who respects science and wants to know as much about my cancer as I can. I have already learned from experience how important it is to ask questions and advocate for myself. I know now I should have been better at it from the get-go or I wouldn't have had to wait a year+ for a proper diagnosis. This time around, I don't have that time. And as you can see from reading this piece, recurring cancer doesn't stop for anyone or anything. Not yet, at least. 

What It's Really Like To Receive a Cancer Diagnosis

Updated: Dec 7

Unless you've been through a cancer diagnosis, it's hard to imagine what a loved one is going through, but we've found this fantastic analogy which really helps to paint a picture of what it's like to receive a cancer diagnosis. With thanks to Caitlin Feeley who originally wrote this much shared analogy.

What’s it like to go through cancer treatment?

It’s something like this: one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion - “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” - and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy - they’re half grown and only have three legs or whatever, and you think to yourself - why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric sabre fangs, and you feel like an asshole for even thinking that - and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you - maybe a parent or sibling or best friend or, in my case, my husband - comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE” and the mountain lion punches your husband right in the face. Now your husband (or whomever) is rolling around on the ground clutching their nose, and they've bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.

Maybe. You’re not sure - it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”

Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “f**k this mountain, I never wanted to climb it in the first place.”

And then as family & friends we assume the run-in with the mountain lion is over and we expect our loved ones to get back to their old selves... But we've also found this fantastic sequel which helps explain life after cancer... Thanks to Julia Tugwell for sharing.

So you’ve beaten the lion. But everyday you have to open the fridge. For a while you expect the lion to be there everyday. But it’s not. Eventually you can open the fridge with no fear. Some mornings you even forget about there was ever a lion in there. Some days you even forget about what the bear did to you.

Ten months after my lion I opened the fridge and found a mountain lion cub. No one was sure if this cub would turn into a mountain lion or not. It may just run away and grow up somewhere else, or if I kept it it may turn into the most ferocious mountain lion ever seen and kill me. But when you’ve had a run in with a lion you try your best to avoid another.

The guys who know best about lions say they can take the kitten away, just to be safe. As it’s not a full grown mountain lion they don’t need a full grown bear to kick it’s ass. A bear cub will do. Even bear cubs scratch.

Three more times I’ve opened that fridge and found a mountain lion cub.

Once I did just ‘watch and wait’ to see if it was going to leave or get bigger. It did get bigger and that meant a bigger bear cub was needed to sort it out before it became an adult. That one tore a chunk off me.

But everyday you’ve got to open the fridge. Imagine that? How mentally exhausting to live in a state of perpetual uncertainty and fear. Because it’s such a horrible way to live most people who have had a brush with a mountain lion find that they do their very best to make the best of every day. That adds to the pressure. Many survivors find it a great help to lend a hand to others still running up the mountain.

This year I found another cub. Just sitting there one day.  These cubs clearly love me. Another bear, not adult, but adolescent was found to dispatch this cub. The mountains the cubs live on aren’t as tall. But by the time you’ve spent 3 years running up mountains you are totally knackered.

Being a lion fighting, bear cub finding, mountain climbing person can be pretty dull for those around you. They’ve never found a lion in their fridge. The first time they are curious, they are pushing you along. By the 3rd or 4th time it’s only those who are absolutely closest to you that even turn up to watch let alone lend a hand.

Most recently I opened the fridge and whilst there was no lion, nor cub, there were a few footprints in the butter. Lion experts looked and couldn’t be sure if there was a lion around without the help of yet another bear. Yet another climb up the mountain. It wasn’t a lion. It was something the last bear had left behind. Even the bears, the savage lion killers can cause problems you know.

So.

I never wanted to climb the mountain. Not once. Not twice. Not thrice. Not forth. Not fifth.

Those who have never found a lion in their fridge won’t get that.

But those who have will.