Sarcoma, soft tissue
This testimonial includes a description of this patient’s actual medical results. Those results may not be typical or expected for the particular disease type described in this testimonial. You should not expect to experience these results.
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“I don’t have time for anger. My focus is to make sure my kids have a father.” That was I what I thought and how I felt when I learned I had synovial cell sarcoma, an extremely rare form of cancer. I was 35 at the time and newly remarried. My career as an insurance and financial services agent for Farmers® was thriving. Life was good.
My wife, Jeanne, was so strong and supportive. And my children, Jackson and Zoe, handled my diagnosis and treatment better than I could’ve possibly have imagined. We knew the journey would be challenging, but we took the “bull by the horns” and came out of this experience healthier and stronger people. It was a family effort.
Waiting for a diagnosis
In the years leading up to my sarcoma diagnosis, I experienced a number of problems with my left knee. I had several shots of cortisone or Synvisc® in my knee for pain, arthritis and inflammation. In 2004, I had surgery to repair a torn meniscus. Within a few months of the surgery, my knee was sore and swollen again. My doctor shaved my meniscus down and removed scar tissue. Less than a year later, the pain and swelling returned, becoming more and more severe. It also became difficult for me to walk normally. I had X-rays, MRIs and visits with multiple doctors. Finally, in December 2006, an orthopedic surgeon determined from the scans that I had a tumor in my knee. He recommended that I see an orthopedic oncologist in Oklahoma City as soon as possible.
We scheduled an appointment with the orthopedic oncologist and she agreed that it was likely a benign tumor. A few days before Christmas, I underwent surgery to remove the tumor. The day after New Year’s, Jeanne and I received the news: it was synovial cell sarcoma, a rare malignant cancer that manifests itself in the soft tissue around joints. The tumor had been on the inside of my knee, wrapped around a nerve and extending around to the front of my knee. It was 11 centimeters long. I underwent a chest X-ray and CT scan that day and discovered that, fortunately, the cancer had not spread beyond my knee.
The shock wave of being told I had sarcoma was so intense, especially considering I knew next to nothing about the disease. I decided I was going to attack it from all angles—and we did.
My sarcoma treatment at CTCA
We returned to our home in Tulsa after receiving the diagnosis. It took a day or two to process what was happening. Then I got focused. I scheduled appointments to see a psychologist, naturopathic clinician and a local oncologist. Jeanne called Cancer Treatment Centers of America (CTCA) at Southwestern Regional Medical Center, which just happened to be across the street from our home. We set up an appointment for a consultation. From the get-go, I was impressed with the fact that CTCA had all of the types of healthcare providers I was looking for right there. In addition to oncologists, they had psychologists, naturopathic clinicians and other providers. I was thinking, “Woah, these people are on the same page as I’m on.” But first and foremost, were the medical oncologist and radiation oncologist. We met with Dr. Jaggernauth and Dr. Flynn and I felt very comfortable.
We decided to go ahead with treatment at CTCA. Dr. Jaggernauth recommended an aggressive treatment plan consisting of six cycles of high dose chemotherapy. Once I completed my chemotherapy regimen, I was to receive radiation treatment. The goal was to shut the cancer down once and for all.
I waited three weeks for my knee to heal a bit from surgery and then I started my chemotherapy regimen. I had a port surgically implanted in my chest that I received my chemotherapy through intravenously. Each cycle was a 21-day period. It would start on Monday morning when the chemo bags would be connected to the port. The infusion process would last for five to six consecutive, full days. Fifteen days after infusion, I would go in for blood work to assure that I was strong enough to start the next round.
The week during each infusion, I tried to focus as much as possible. I would listen to meditation tapes to help me envision the chemo killing the cancer cells. The free Wi-Fi in the inpatient rooms allowed me to work from the hospital. The week after each round of chemotherapy was extremely rough because the chemo was hard at work. I was nauseated, but I never threw up.
I did have blood transfusions for cycles four and six. This helped make it possible for me to complete my intensive treatment regimen. There was a point when I wanted to give up on the chemotherapy. The little things I could do during that time became triumphs, like walking to the mailbox. I lost 45 pounds and I lost my hair. I looked pretty awful. But I made it through. My goal was to be done in May and play in a big golf tournament I play in every June. I did it, and it was great.
In the first week of June, I started radiation treatment. I received 37 treatments targeted to my knee. Overall, the radiation was relatively easy on me and I had few side effects.
At various points of my sarcoma treatment, I took advantage of the integrative oncology services CTCA offers, including mind-body medicine, naturopathic medicine and nutrition. I believed these therapies could help me live healthier, and I put it into play much of what I learned.
My expectations were met and then some at CTCA. I give my doctors a lot of credit, as well as the nurses (in particular, Alice who assists Dr. Jaggernauth, the nurses who care for inpatients and the infusion center nurses). The radiation therapy team is fantastic too.
The hospital also does something called Comfort Rounds, which are tremendous. A group of doctors, practitioners and other staff visits with inpatients to make sure all of their needs are being met. Not only does it help these patients, but it helps the hospital learn from the patients so they can improve the care and services they provide.
The cafeteria staff is also great and the hospital concierge embodies the spirit of CTCA. People hang out in the lobby just to be around her. She gives out positive energy and hugs.
All in all, it’s A’s across the board for CTCA.
A healthier lifestyle
When I started treatment, I set out to change whatever it was that may have gotten me in that situation to begin with. Sure, it could have just been weird luck and there was no rhyme or reason to it. But I wasn’t going to put myself at risk. So I’ve never stopped striving to live an overall better life.
I stopped drinking soda and eating fast food. I used to be addicted to nicotine. I quit that as soon as I heard I had cancer. Because I live and work so close to the hospital, I still eat there almost every day. I go there to eat the organic food they serve in the cafeteria. I’d say 70 percent of my meals are organic. I only drink water or organic green tea or juice. Every now and then, I’ll splurge and have a beer or glass of wine. It’s also rare that I eat red meat.
I take a multivitamin daily. I also use organic shampoo, hair care products and such. Going through cancer, I’ve also learned how to handle stress better.
The surgery, chemotherapy and radiation were all necessary for me to beat the disease. It was brutal, but certainly a small price to pay. Because of all of the lifestyle changes I’ve made since my cancer diagnosis, I am leading a healthier life.
I return to CTCA for checkups. For the first year and a half, I went in every three months. Now I go back annually for blood tests, a MRI of my knee and CT scans of my abdomen and chest (which is the area the cancer would most likely spread to), followed by a visit with Dr. Jaggernauth.
I regularly speak to newly diagnosed cancer patients in the Tulsa community about what it’s like to go through cancer treatment and how to deal with cancer. I served on the CTCA Patient Advisory Council for two years, and today I’m involved in the CTCA Cancer Fighters® Care Net. It allows me to speak directly with people considering going to CTCA for cancer treatment. It feels good to give back and help other people out. Although I do write checks to several cancer-related charities and research foundations, I find that actually getting involved and speaking to patients is much more rewarding.
One of the first things I recommend to people is chronicling their cancer journey on CaringBridge. It is one of the most helpful tools for a cancer patient. It makes it easy for family and friends to get updates on patients, and it lets patients know how much people care about them.
I make a difference in any way that I can. I take time to talk with people. For example, I’ve probably had 100 meals with patients in treatment at the hospital I had never met before. And I make time for my family. As years pass and I continue to reach milestones as a cancer survivor, I look forward to seeing my children reach milestones in their own lives.