I have hesitated in sharing my story, how much and with whom. Getting an unexpected diagnosis of cancer is deeply personal, yet it also has had an effect on those who know me. I am still mentally and emotionally processing the changes in my life.
On October 14th, I met Karen Newman, a champion triathlete who also has had a diagnosis of cancer, and she encouraged me to be more open about what’s been happening in my life.
So here goes…
Both of my parents had cancer, so this disease is no stranger to me. If anything, I thought just maybe I’d be at risk for breast cancer. But bladder cancer? I never even heard of anyone who had this.
My family knows that I’ve avoided doctors. As a gift to one of our daughters, for her birthday in May 2016, I promised to go for a check-up. She had been bugging me to go for quite some time. Maybe I had a small suspicion that something wasn’t quite right physically, but I felt great. The exam went well. Even the urinalysis was negative. Before I left, however, my Primary scheduled a CT scan, only because she felt there may be some abnormality she felt in the intestinal area. Very reluctantly, I kept that CT scan appointment. As it turned out, there was no intestinal problem. Surprisingly, it was when the radiologist looked at the scan that some kind of thickening, or growth, was discovered in the bladder. That’s when my life took a dramatic change.
I was diagnosed with stage 2, invasive, high grade non-metastatic bladder cancer. The treatment plan after surgery on July 14th - taking out the tumor and putting a stent in the ureter, was for a series of chemotherapy treatments, and then the removal of the bladder, uterus, and urethra. Wow. I would be the one going through all of this. How would it affect my family? I had felt so healthy. Now I had cancer. I was determined I would “rock” this. I wanted to survive. I wanted to thrive.
After the first surgery, I felt relieved that “they got it all.” I was scared of chemo. I didn’t want to be nauseous and weak. I was grateful to my daughter who accompanied me to all of my treatments. This opened a whole new world to me of patients and medical staff fighting this disease. Each time we left the chemo clinic, I felt better than when I came in. There was a true spirit of optimism there. Everyone we met seemed so positive, understanding and friendly. And I think the steroids gave me a boost.
My oncologist said I was getting really strong chemo and that I was tolerating it very well. The big bump in the road for me was that I had developed a urinary tract infection. Antibiotics did not work. It was a nightmare. Pain and needing to use the bathroom every fifteen minutes or so did not help me get the sleep I needed. I told my oncologist that chemo was “a piece of cake” compared to this. I knew all the public restrooms between UVM Medical Center and where I live, sometimes stopping two more times on the twenty minute drive home. Cipro finally helped, but the need to frequently use a restroom became part of my life. I became housebound, except for my appointments, and more and more tired.
The other new world that opened up to me was the overwhelming support from family, friends, and even complete strangers. It was like living in a warm bubble of love, and the bubble was huge. People shopped for us, cooked for us, prayed for us and with us. Our library offered to deliver books to our home. When I’d wonder what we’d have for dinner, someone would show up at the door with a hot meal. One time one of the priests we know came to do the door with a hot dish and with the Holy Eucharist. Receiving cards and gifts put a smile on my face everyday. It made me even more determined to get well and to become as healthy as I could be, just to begin to give back to others so much of what was given to me.
During this time I needed a goal – something to strive for, to kind of reach into the future to keep me hopeful. Our daughter who came with me to chemo inspired me to think about First Strides Vermont, a women’s walking/running group that meets up in our town in Spring. I said, “I’d like to be part of that group.” Recovering from chemo treatments, I’d pace around our bedroom for exercise. I told myself I was in training for First Strides. My daughter bought me a really cute hot pink running skirt. I kept it on a chair in the bedroom so I’d see it often.
I had always considered myself as the strong one, the healthy one. I didn’t need a doctor, right? Now I keenly felt my need. I felt for my husband and family who would need to deal with the outcome of this disease.
The prospect of living without a bladder is daunting. I met with the ostomy nurse to learn what it would be like. She was all smiles; I was uncertain. She assured me there was no reason why I could not participate in First Strides.
I prayed a lot. I discovered St. Peregrine, patron saint of cancer patients. I found out that I was not only on the prayer list of our neighborhood parish, but that I was on other prayer lists as well. Sometimes I felt almost like I was floating on prayers. I was never depressed. I did cry a few times. The diagnosis can feel overwhelming, but so is the support I was blessed with.
I participated in a healing service at the nearby Catholic parish. This strengthened my hope. When the Bishop visited the church, I told him of my diagnosis, and he prayed for me. I received the Sacrament of the Anointing of the Sick. Friends I connected with on facebook prayed for me and asked others to pray. A friend, who is not Catholic, happened to be at Fatima during a pilgrimage; he lit a candle for me there and brought me a rosary. I was blown away by this. I knew I was not alone on this journey, but united and made strong in this community of believers.
After recovering from chemo, I tried to make an appointment for the major surgery. I did not have peace about this, but I thought it was the necessary next part of the treatment plan. It would happen either just before or after Christmas. When I called to schedule, the urologist asked me to come to see him. He had studied my recent scans and decided to change the treatment plan. Instead of surgery, he determined it was best to treat me “aggressively” by examining me every 3 months and have scans every 6 months. Whew! A great relief. I had a reassuring peace in my heart about this. If the bladder is healthy now, why remove it?
I still had inflammation and I still had to time my car trips and know where the bathrooms would be. The infection was finally gone. The urologist said that the bladder would never be 100%. I was looking for continued improvement.
While going to chemo treatments, I learned about oncology rehab for cancer patients to work out at the gym with trainers, part of the UVM Medical Center. I signed up. During this time I had a treadmill stress test. I was told that if I wanted to become any more fit, I should start running. I took this as a challenge. I started on the treadmill at the gym, encouraged by the staff. That was a turning point for me.
Then it was time for the three month checkup with the urologist. I had another cystoscopy test. By now I was getting used to this. Then I heard him say, “I know you don’t want to hear this, but...” The inflammation was decreased, but he had seen something in the bladder that was not there before. He wanted to schedule another surgical procedure to remove whatever it was. After the procedure was over, it was an anxious time of waiting for the results of the biopsy. I went to see him for my post-op appointment. Good news! No cancer! I cried with relief. For some reason, after that procedure the bathroom issues I had been experiencing greatly diminished. Continued improvement.
Within the week I was back on the treadmill.
I’ve always admired runners. Both of our daughters run. I remember watching one of them during high school cross-country meets and thinking, “I wish I could do that.” I recall cheering our other daughter who ran a half-marathon, and was truly impressed. I thought it was for them to do, not for me.
When it was time for First Strides to begin in May, I was somewhat nervous. There were about 100 women there, including a few I knew. We did a timed mile, and I was placed in a small group of those with similar timing to mine. It was the first time I openly shared with strangers that I had been diagnosed with cancer. They were most supportive. Our group did intervals, walking and running. At first it was more walking, and as the weeks went by, we did more running. I was enjoying this.
Running became important to me. It was like putting a distance between me and the cancer.
After First Strides, I kept up a running routine mostly around the neighborhood recreation path. It was familiar and comfortable for me. Other runners were always talking about 5Ks. Could I do this? I tried stretching out my distances to see if I could run a full 3 miles, maybe more. I was determined. I signed up for my first 5K at Shelburne Farms for October 14th. It would’ve been my Dad’s birthday, so the date was meaningful to me. I didn’t tell anyone, just in case I’d back out. One of my friends from First Strides also signed up, so we decided to go together.
On the day of the run, I was happy to see most of my First Strides group there, including our mentor. There were men and women of all ages. It was a brisk and sunny day. I’d be running in an unfamiliar area on unpaved roads, in the fields, into the woods, and along Lake Champlain. There was a steady increase in elevation along the way. On the run, the women from my First Strides group were ahead of me, but I kept them in sight. I passed one woman, then she passed me, then I passed her, … I heard cheering up ahead; it was the two mile mark. When I saw the finish line come into view, I took off like a bullet. I crossed the line as fast as I could. I did not feel as exhilarated (as I expected), but exhausted. But I did it! My first 5K. All of us in our First Strides group came in very close in timing. I was thrilled to receive the award of coming in first in my age group 70 + years . Well, I was the only one in my age group, but 38.08.7 was a respectable finish. A highlight of this 5K for me was the privilege of meeting Karen Newman.
I continue to run because I CAN do this. I do it because I am grateful for the physical fitness that I’ve been blessed with. I do it because of the wonderful and inspiring people I meet along the way. I do it to stay as healthy as I possibly can be. I do not know what the future holds. I want to be ready for whatever comes my way so that I can meet any situation with good physical health, hope, and grace.
Each person has his or her own challenges. Being diagnosed with cancer, dealing with this, is mine. My heart goes out to anyone with this disease. I look forward to major advances in treatment so it is no longer such a scary disease for so many individuals and families.