When I was 34-years-old I was diagnosed with colon cancer.
Not something you expect for someone young and fit, but it happens, and it’s happening more and more often. I didn’t know it at the time, but colorectal cancer is drastically on the rise in young people, and I was just another one joining a very long cue.
The week after diagnosis, I had what a layman would call a colon resection. I had 10-inches of my sigmoid colon removed, and 30+ lymph nodes – most of which were cancerous. My surgeon was forthcoming with as much information as a girl could ask for, including what to expect during surgery, after surgery, and what life would be like less a small portion of my large intestines.
But as he hovered over my bedside in the days after surgery, and the months of follow-ups, he failed to mention the risk I was under for now lacking 30+ lymph nodes on the left side of my pelvis. I proceeded to start chemo, and went on with my life battling metastatic cancer with no complications.
Three years almost to the day of that surgery, I flew out to Los Angeles to see my godfather, who himself was battling cancer. This visit wasn’t just for Thanksgiving, but a chance to say good-bye. Everyone knew it was just a matter of days or weeks before he would enter hospice. As I swapped out my Uggs for flip flops at the airport, I could instantly feel the swelling in my left foot and ankle. Having had intense edema with both pregnancies, that’s not a feeling you soon forget.
Given the level of toxicity my body was living in with chemo, I shrugged it off and blamed all the drugs I was ingesting. With the swelling gone by evening, it was out of sight and out of mind.
I returned to Los Angeles two months later for his funeral, and notice the mild swelling again when I deplaned. I shrugged and just figured I would be one of those people that puffed up on flights, and noted that I would start traveling in compression socks – plenty of which I owned from my days as a runner before my cancer diagnosis.
The difference on this trip, and the days and weeks that followed, was that the swelling in my ankle never went back down. It was really only noticeable to me, and I had no issues fitting into any of my clothes, shoes, or boots. I just committed to wear my socks when I flew or knew I would be on my feet for extended periods of time, and accepted this as a sign I was getting old, or my body had probably seen better days since cancer.
Two months after the funeral, with an ankle still mildly swollen, I got food poisoning. I remember the salad like it was yesterday, as I believe it was the catalyst that changed my life and my leg forever!
It took four weeks of fluids, medicines, samples, and tests before the food poisoning finally cleared up. About a week after my body finally felt normal again it happened. I was sitting at work in my usual pair of skinny jeans when I could gradually feel them tighten, and that all too familiar feeling I had with edema during pregnancy creeped up my left leg. In the course of a single day, I could feel my entire leg swell, and couldn’t wait to get home, rip my jeans off, and find out what was going on.
I took my swollen leg to my oncologist, who told me the swelling was probably linked to my kidney function, which was faltering at the time – probably due to a drug I was on. I questioned him aggressively, asking why if the swelling was due to my kidneys, it wasn’t evenly distributed all over my body. Why was it just one leg? As my leg grew larger over the coming days, I returned over and over to my oncologist demanding an answer. He would look at my leg, the infusion room nurses would look at my leg, and everyone (pretended) to be perplexed. I have to believe the nurses at the very least had an idea of what was going on, but no one wanted to be the bearer of bad news. That was the doctor’s job.
If there’s one area of medicine I think there would be some knowledge of lymphedema, I’d like to think it was oncology. And deep down I’d like to think that these sweet nurses, or perhaps an ignorant doctor just didn’t have the heart to break the news to me. After 2 weeks of my almost daily calls and visits, my oncologist finely said, “I think I’ll refer you to the lymphedema clinic. They have a way of wrapping your leg to get all this fluid out.”
Awesome. So all I need to do is have my leg wrapped, move this fluid out, and life and my leg will be back to normal. That appointment couldn’t come soon enough.
I was so naive I didn’t even go home and research lymphedema. I simply showed up for my appointment, eager for relief and my leg back. I had no idea that I would walk into an appointment, and walk out with life-changing news.
At the time I accepted my new fate with grace, and joked that cancer was indeed the gift that keeps on giving. I easily balanced my disappointment with the knowledge that things could always be worse. How many friends in the cancer world would gladly welcome lymphedema for a chance to be alive? How many friends were living with a permeant ostomy because of colorectal cancer? How many of my friends were fighting for their lives? Who was I to complain about a condition that didn’t threaten my life, potentially leak at the most inopportune times, and wasn’t fatal?
But that glass-half-full attitude doesn’t mean I’m happy with my leg, and wake up every morning grateful to fight with my compression garment. This leg effects almost every aspect of my life. It effects the way I shop for clothes, get dressed in the morning, travel, sleep, date, eat, and exercise. It effects my mood, my motivation, and my mental outlook. It is a daily struggle, and that says a lot for a girl who has gotten up every day for over 5 years knowing I have cancer inside my body, and spend almost every week getting a chemo infusion to keep it at bay.
Lymphedema has a greater impact on my daily life than cancer. Losing my hair over and over, and dealing with the side effects of chemo have not taken the toll on my self-esteem like this chronically swollen leg. But I take my glass-half-full self and I still get out there and live. I have found my way around a leg that doesn’t always want to cooperate, and remind myself that in so many aspects of chronic disease, there is always someone out there struggling more than I am.
Even with lymphedema, I wonder if I’m even worthy to complain in the company of my peers. I have a leg that most people wouldn’t even notice. I can walk into the store in my skinny jeans, and my legs look normal. I wake up every morning, and unwrap my bandages to almost symmetrical legs. But this leg is still a constant battle for me. I still invest time daily in massaging, pumping, wrapping, unwrapping, and rolling bandages. It still impacts how I feel about myself, and quite often what kind of day I’m going to have. I still dread the heat of summer, will join my friends in the hot tub with one leg hanging out, and can be found neck deep in the pool all day instead of sunning myself in a lounge chair. My leg is still all consuming, but it doesn’t stop me from living.
I have come to terms with wrapping, and look forward to it every night knowing it’s the absolutely best thing for my leg. It has become a source of comfort for me, knowing that no matter how bad my leg is during the day, I can always go home to wrap it and set it back on the right path. I’ve learned through trial and error that not a day can go by when I don’t wear compression. Even when my leg looks almost normal, I can never take it for granted or tell myself it will be fine for a little while. Give that leg a hour out in the open and it will take a full night of wrapping to make up for the swelling. I’m fortunate in that I can get away with just a compression sock if I’m running to the gym, but I know that means I’m also running home to wrap after my shower. My obsession with looking after my leg lies in the hope that surgery will one day be an option for me. I want my leg to stay as small and healthy as possible as I work toward the day when we can see a cure, a fix, or a procedure to make it better for each of us.
I’ve never gone above and beyond to hide my leg, though I do own an assortment of maxi dresses. I do what I can – especially in the colorectal cancer world, to educate people about the risk they are under if they have had lymph nodes removed. On the very first day that I was diagnosed, I came home and quickly posted a photo of my newly wrapped leg to social media, announcing to everyone that was listening that I now had a new complication for this disease, and that I had no problem with the world knowing. As much angst as it causes me behind closed doors, I’ve never held back on showing the world, talking about it to anyone who was interested, and educating anyone at risk.
In looking back at the medical care I had received since my diagnosis, only one doctor even remotely came close to touching on lymphedema. And it’s not that he ever discussed it with me, warned me about it, or told me it was a possibility. Every other week, when giving me the once over on his exam table before chemo, he always looked at my ankles and pressed on them. He never explained why. I wish he had.
Where to find Sarah: