In August of 2015, I began having discomfort in the back of my right leg. I remember attending a friend’s engagement party and having to keep sitting down. Then one day shortly thereafter, while vacuuming and preparing to have friends over for my son’s 2nd birthday, I was having stabbing pain in the back of my leg.
This went on for a couple weeks. I figured it was just overuse, or maybe I had torn something running, as I’d recently stepped up my workouts. In addition, my job as an event planner had me on my feet for 12-14 hours at a time, so perhaps it was just from overuse. Eventually though, event days became excruciating, and I couldn’t finish my runs.
When I told my mom about it, she said, “It could be a blood clot,” so I immediately drove to the nearest urgent care center. The doctor there ordered an ultrasound. A half hour later, the urgent care doctor told me that the radiologist diagnosed it as a hematoma. She told me to take ibuprofen for the pain but to go to an orthopedic surgeon in a week if the pain didn’t get better.
I really didn’t know what a hematoma was, so I went home and went online. Pictures showed massive black and blue marks covering legs and arms. That’s not what my leg looked like. It looked normal except that my hamstring muscle looked like it was getting bigger. Was that from the extra running?
After more than a week, it still hurt and wasn’t getting better. Plus, I still wasn’t convinced it was a hematoma because it just didn’t look like what I saw in those pictures. I made an appointment with an orthopedic surgeon who ordered an MRI. When I went back for the results, the doctor said that the MRI showed a mass and that they needed to refer me to “more specialized academic care at MD Anderson.” I lived in Houston at the time, so he was referring me to MD Anderson Cancer Center. No one wants to leave their doctor’s office with orders to go there. I hadn’t fully processed how upset this made me until I was checking out at the receptionist’s desk, and I started crying. “Don’t worry,” the receptionist tried to console me. “I see these things come back negative all the time.” I hoped mine would be one of those times.
The following week, I met with an oncological surgeon at MD Anderson. She looked at my leg, and I sensed her concern. She said that we would need to do a biopsy and then get me well so I could have lots of time with my 2-year old son. Get me well? Well from what? We hadn’t even done the biopsy yet. We didn’t know what it was yet.
Four days after the biopsy, I was home on a Tuesday morning when the physician’s assistant called with the results. It’s sarcoma, she said. Six rounds of chemo, followed by radiation and then surgery was the treatment plan. I was immediately spun into a state of disbelief, panic, terror, and denial. I kept wondering how she could sound so calm and metered while I was roiling inside. How could this be happening? I exercised, ate well, had no chemical vices. It just didn’t make sense.
What scared me most was not fear of dying but fear of the treatment. I considered not going through with it. I didn’t know if I could bear what was ahead of me. But then I thought of my 2-year old son. I knew I couldn’t give up, for his sake. So, I agreed to the treatment. All I wanted was to “get it all over with” so I could get back to life as normal. What I didn’t know was that this was the beginning of life’s never being the same normal again.
I started my first round of chemo on Halloween morning 2015. Each chemo round would last 5 days. Then I would have two weeks “off” to recover. The first week, the chemo week, I just felt terrible. Weak, nauseous, constipated, and with terrible tongue sores that caused great pain from the softest and blandest of foods. I’d get blood tests every couple of days to check my counts. The second week was usually when my hemoglobin dropped, and I’d have to have a blood transfusion. I’d feel a little more energetic the third week, even almost a little normal – I could actually stand up long enough to make my bed. And then the whole process would start all over again. My days out of the house consisted of chemo treatments, blood tests, doctors’ appointments, and MRIs. When I was home, all I did was lay in bed. I didn’t have energy for anything else.
One unexpected blessing of it all was that my son and I had some of our best quality time. With such little energy, I had no focus. There was no plowing through books or learning French with the time. I could only concentrate enough to watch cartoons. I found solace in their simplicity, and my son and I would snuggle in bed together watching “Caillou” and “Berenstain Bears.”
I was so weak that I remember one day, after a round of blood work, my neighbor came to my house to help my husband carry me down the stairs and to the car to get a blood transfusion after I received word that my hemoglobin was low. I had never felt such physical weakness in my entire life as that day.
I missed doing the simple things that required zero effort before….Standing at my sink to wash dishes, doing laundry, getting up to use the bathroom without having to psyche myself up for the effort it was going to take to walk the 10 feet. Everything felt SO HARD.
Four months and six chemo rounds later, I had my last day of chemo on Sunday, February 21, 2016. I couldn’t wait to ring the bell. When it was time, surrounded by friends, I rang and rang, and cried for joy that that part was over.
Radiation was next. I would go in for one “zap” a day, 5 days a week for about a month. After the ravages of chemo, I actually looked forward to radiation because its treatment on an extremity usually caused less severe side effects than chemo. My appetite got better and most of the side effects were just fatigue and a sunburn-like effect on the back of my leg. Those were welcomed, compared to the side effects of chemo. I went to radiation every day with a burgeoning joy, knowing I was one step closer to completing this journey. When radiation finished, I had a few weeks to recover before surgery. I went home to Pittsburgh to visit my family during that time. I was bald and skinny but excited for the surgery to come. One more step closer.
After my trip on the pre-op appointment, the doctor said that she would have to remove my entire hamstring muscle in order to get clean surgical margins. After 20 years of doing it for stress relief and exercise, that meant no more running. This was not as saddening as I expected however because I had been worried I’d lose my leg. Too much research on the internet informed me that in the not too distant past, sarcomas of the extremities were treated with amputation. I was grateful I’d keep my leg.
Exactly one week before my 40th birthday, I went in for surgery to finally remove the now football-sized tumor. Six hours later, I came out of surgery in a lot of pain but with “that thing” out of my leg. Two days later, I got the good news that the tumor was more than 95% dead, which meant no more treatment post-surgery.
Physical therapy followed for the next 8 months. PT was such a joy for me because, like radiation, it represented a new hopeful chapter. I went from using a walker to a cane, to walking unassisted. Three years later, I taught myself how to run again.
I got scans every four months, and I was out of the 2 year “danger zone” for recurrence. I felt my cancer journey was behind me. Dues paid. Chapter closed. Life back to normal.
Enter the Coronavirus pandemic.
In the summer of 2020, my days for the past three months had been spent with my son, home-schooling while the world waged war on a virus more deadly than the flu of 2018. In June of that summer, I was scheduled for my usual four-month checkup. I had no fears. This was going to be another routine checkup and I’ll have checked that box. One more checkup closer to the 5-year mark.
I was at home after a wonderful day outside at the pool with my son when the results came through my healthcare provider’s portal. The scans showed a suspicious spot. I was flooded with panic. This wasn’t supposed to be....I had just passed the 4-year mark cancer-free.
I was living in Illinois by this time and had the scans sent to my oncologist in Houston the very next day.
Life felt like it stopped again when she called and said she believed it was a recurrence.
I couldn’t believe this was happening again. After a biopsy, it was confirmed that the same sarcoma had recurred. I learned that a recurrence happens because microscopic cells were left over from the first surgery, and they eventually multiply. It took four years for the tumor to show up again. The one bit of good news was that I didn’t need chemo or radiation this time because it had been caught early. But then the bad news came – the tumor was growing against my sciatic nerve. In order to get all the cancer, the surgeon would have to cut out that piece of my sciatic nerve. This meant my foot would be paralyzed...I wouldn’t be able to feel or move it and would have to wear an “AFO” - a special brace – to keep my foot at a 90-degree angle when I walked so that I wouldn’t trip over my toes.
I still just couldn’t believe it. I thought I’d paid my dues and cancer was behind me.
On September 23, 2020, I had surgery again to remove this new tumor. This time, I wasn’t looking forward to surgery because I knew something would be taken away from me - my normal walking ability, and sadly, the ability to run that I’d re-gained after the last surgery.
Emotionally, this surgery was a lot harder than the first one. The first time represented the end of what was the hardest fought battle of my life, and I had so much promise looking ahead. Naively, I didn’t expect to face it again, even though I was told there was a chance of recurrence. I just didn’t believe it was possible. How could I have such misfortune to have to go through that - often tortuous - ordeal again?
Once again, the only thing pushing me forward was my son, who was 7 by this time.
I woke up from surgery in a lot of pain yet with a completely numb foot. Over the next six weeks, I experienced excruciating nerve pain. It was like my sciatic nerve was screaming in pain from being cut. I think this must be what amputees call “phantom pain.” I started physical therapy again, and over the Fall of 2020 worked to strengthen my leg.
Eventually the nerve pain lessened, and a few months later, I started going back to the gym. Wistfully looking at the treadmills, I hopped on the bike, unsure if I could do it. I pedaled, and pedaled a little more. With the strength of my quads, cycling was possible. I now take cycling classes on a regular basis.
It has been one year since that surgery. I still experience grief at the physical changes. Adapting to the loss of mobility as I once knew it has been difficult. I was always a “mover,” and now, I’m a lot slower. Going up steps is hard, and oddly, things like people passing me in the airport are a reminder of what I’ve lost.
I do also experience sadness at the loss of the trivial. There’s no more wearing flip flops or summer sandals at the beach since a brace doesn't fit in those. And wearing a brace is at conflict with my vanity. People instinctively avert their gaze to my black, not-so-cute brace, and I’ve struggled with the self-consciousness of that.
I also find myself projecting to what I will or won’t be able to do. On vacation, how will I walk across a beach with a flaccid foot? How will I do a sight-seeing tour, maybe in Europe, some day? But in the midst of this emotional stew, I also experience gratitude. Gratitude that I still have my life, my leg, time with my son. As I ride this seesaw of gratitude and grief, I know there’s a lot of life still to be enjoyed. Truthfully, I experience some guilt on those grieving days for not feeling the gratitude, but I’ve learned that after cancer or any other traumatic life event, it’s as important to mourn life as you once knew it as it is to relish life’s current daily goodness.
So, each day I’m still learning to live with the loss. With the recurrence, I lost some of my innocence. I had a naivete that I wish I could get back. I feel more vulnerable than after the first diagnosis, and I struggle with worries and fears of yet another recurrence. One thing that helps me feel empowered is taking care of my mental health and working on building my resilience. While I’ve always eaten well and exercised, managing daily stress was one area of my life that I didn’t feel I did particularly well. Science has shown that stress manifests physically. I’ll never know how I got sarcoma, but at least I can do all I can to feel like I’m doing the absolute best for my health. With their mindfulness and meditation programs, Lending Hearts has presented me with an opportunity to work on my mind-body connection, manage times of stress, and build my resilience. I look forward to my weekly mindfulness and meditation sessions with Aimee Lamendola made possible by Lending Hearts. I put the techniques into practice especially each time I go back to Houston for another checkup.
I do have some hope that I’ll walk normally again someday. Doctors did a nerve graft where they removed the chunk of sciatic nerve. I have hope that the grafted nerves will grow down to my toes and I’ll one day have some feeling and function in my lower leg and foot again. There is no guarantee, and it will take at least another year before I know if the nerve graft “took.” In the meantime, I keep hope.
Alia Rdissi
September 21, 2021
Urbana, Illinois
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