Life After Chemoradiation
On Becoming a Thriver
It's been two weeks since I had my last chemoradiation treatment for my anal cancer at St. Mary's Cancer Center in Walla Walla. I looked forward to the day like a child crossing off the days until Christmas. During that last radiation session, I silently counted the three 60-second arcs of the machine while apparently keeping time with my right big toe. "Please keep still," a voice boomed into the room! I guess my excitement was hard to contain as I had never been similarly chastised before.
Next, I received my certificate of completion and then rang the ceremonial gong at the front desk. Yay me! I had done it.
Outside my friends were waiting to have a small yet socially distanced parking lot celebration. Included were my three trusty and loyal patient advocates -- Kathryn Barron, Jackie Scholl, and Suzanne Towery -- as well as the Conductor of my Meal Train, Carol J. Lee. And of course, my beloved partner and soulmate, Doug. Kind words and oceans of thanks were exchanged along with a few tears on my part, and then we went our separate ways. On to recovery.
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At my last appointment I was forewarned by my radiation oncologist that I may go through a period of depression in the early stages of recovery, not unlike post-partum depression. She also warned me that my physical symptoms may stay the same or perhaps get a bit worse as the chemoradiation stays in the body doing its magic for some weeks. But in time, I should begin to feel "better."
One of the misleading side effects of my kind of cancer and its treatment is that I really never showed outward symptoms that I was undergoing chemoradiation. Because I kept my full, bushy white head of hair, I never looked like a balding chemo patient. But little did people know that I was losing hair down below, which ultimately left me with a partial Brazilian, kind of a final parting gift. Ole'. I also timed my public appearances to when I was feeling secure in my bowels and could be on my best behavior. Only Doug got to see and hear the other me, moaning and screaming in pain as I tried to poop for the umpteenth time that day. I often felt like I was pooping multi-faceted diamonds when in reality it was only one or two, teeny tiny soft turds.
Fortunately, I was given a product by my radiation oncologist that helped some with the excruciating anal pain due to radiation sores. It's a paste containing zinc oxide, calamine, menthol and other ingredients that I liberally applied several times a day to my anus. I also used Aquaphor liberally along the creases between my legs and abdomen. I have to say I was reminded yet again of my Big Ride Across America where I was one of several self-proclaimed "Slather Sisters" who liberally applied Bag Balm in the nether regions to prevent saddle sores and the like. Twenty-two years later, I was still slathering.
And apparently, it worked because I was one of the fortunate ones not to experience extensive radiation burns across my abdomen and buttocks. Like a very bad sunburn, the skin blisters and then peels leaving large areas of open wounds that are painful and ripe for infection. The only peeling I experienced was in the inner creases of my legs and in my butt crack, and that I only noticed in the first week of recovery. It was more of a nuisance than a pain so I consider myself very lucky on that account.
Another on-going side effect is the deep aching of my tailbone extending outward across my buttocks. No upright sitting position is comfortable for very long, with the way-back position in my lounge chair being the most tolerable. However, the best place, since we don't have a sofa or couch is in bed on my left side. And then I go to sleep.
But the depression; it has really hit me hard. I frequently have to force myself to go swimming at the Y three days a week despite the overwhelming positive effects. It's only in the pool where the water envelopes my body that I feel a freedom from the gravity on land that constantly pulls on my anus and groin. Plus, I feel an energized after-effect that lasts for several hours. But then the blahs hit me again. Hard. My attention span is diminished so reading or trying to concentrate on a project is worthless. My body is fatigued and lethargic, so all the cleaning and organizing projects that have been left undone continue to stare me in the face and overwhelm any motivation I might have. Thank goodness for the Meal Train, or Doug and I would never eat. Even then, doing the dishes becomes a Herculean task some nights.
I have been assured by other anal cancer thrivers that this feeling is perfectly normal, and it too shall pass. So I try to lean into it and be gentle on myself, which for me is not as easy as it sounds. Waiting has never been my strong suit.
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But wait, there's more! Besides the more common side effects mentioned above, there is a host of other effects that anal cancer survivors commonly experience in the weeks, months and even years after the end of chemoradiation treatment. All are a result of a build up of scar tissue as a result of the radiation. As they say, radiation is the gift that keeps on giving. These effects include but are not limited to the following:
- Bladder dysfunction
- Bowel dysfunction
- Chronic diarrhea
- Hormonal changes
- Vaginal stenosis
- Anal stenosis
- Lymphedema
- Pelvic bone fragility
- Hairline fractures and/or brittleness caused by the radiation
- Long-term fatigue
- Small bowel obstructions
With most of these side effects, it's a matter wait and see. There is little a person can do proactively to prevent any of them. But one thing I can do is Pelvic Floor Therapy. This specialized physical therapy can support the pelvic organs, assist in bowel and bladder control, and treat chronic pelvic pain. Who knew? And we're lucky enough to have such a specialist right here in Walla Walla at Providence St. Mary's Outpatient Rehab. My first appointment is scheduled for next week.
I'll also start vaginal dilation with my radiation oncologist with my next visit with her in December. This is the treatment for vaginal stenosis, a narrowing of the vaginal canal caused by a buildup of scar tissue. A similar condition is anal stenosis. Both are treated with dilators which are medical grade, hypoallergenic silicone tube-shaped inserts that come in a set of increasing sizes. Beginning with the smallest size, you insert a lubricated dilator and hold it there using pelvic floor muscles for 5-10 minutes. This isn't a sex toy; rather, it's painful therapy for the private, tender areas of the body that have been ravaged by radiation.
The bottom line is that in order to kill the original cancer, other healthy body parts take a hit. I'm quickly discovering that the chemoradiation was the easy part. For me, the real work is now in recovery and healing.
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Another important thing I have learned from this cancer journey is how little I knew about cancer. I still know next to nothing because my cancer is different from every other kind of cancer. And every person is unique and experiences his or her cancer in their own way. My objective in keeping this blog is to process all the information I have been learning about anal cancer. As my radiation oncologist said early on, I'm taking the condensed course in what took her and the radiation therapists years to learn.
In writing about my experience, I am in no way diminishing the experience of every other cancer survivor who may read this. Rather, I speak from my experience only in an effort to understand and to teach. My heart and my admiration go out to each and every person who has suffered and survived this dreadful disease known as cancer.
