Jenn's diagnosis with leiomyosarcoma was as unexpected as the disease is rare. “I was in my last year of medical training, getting ready to be married,” she recalls. “I’d dropped ten pounds, was doing boot camps, but I noticed that my legs would hurt after walking up even a small hill.”
After one day with particularly swollen ankles, she had an ultrasound to look for a cause. The results came back after she’d returned to work. Her doctor called with a simple message, “You have a huge blood clot. You need to get off your feet now, go to the emergency room and get a blood thinner ASAP.”
She began treatment for the blood clot but the symptoms persisted. Further testing revealed that what her doctors had thought was a swollen lymph node was actually an enormous mass. They moved into crisis mode. “It was Christmas time. We couldn’t get anything scheduled. I finally got a biopsy. They figured out what I had and I started radiation and chemo. It was the worst Christmas ever.”
Although her medical training in pediatrics helped make sense of the jargon floating around her diagnosis and treatment, Jenn found new perspectives on the other side of the gown. Her first bout of radiation left her throwing up, unsure if she could go through the second treatment. Luckily, the tech on duty recognized the classic signs of radiation poisoning and Jenn's care team was able to find medication to minimize the symptoms.
It was a lesson she’ll never forget – and one she shares with her matches. Patients should discuss preventive medications with their doctors before chemotherapy or radiation. That conversation could end up making a dramatic difference in quality of life.
“People have an expectation of being sick and vomiting all the time,” she says. “There are great medicines to help control vomiting and nausea. There’s no reason you have to feel that way all the time. I’ve been on chemo for seven years and have only thrown up a few times.”
She encourages that advocacy in all aspects of life with leiomyosarcoma – or any cancer. “Ask. Ask. Ask. Build relationships. Talk to the social worker. It’s good to have a contact person after you’ve been released.”
Jenn's life post-diagnosis has been a series of ups and downs that included searching for a job while undergoing radiation. “I’d get radiation, pop a pill and get on a plane to go to an interview. I didn’t make a big deal of it, but I decided to share that I was in treatment with potential employers.”
She underwent surgery, where doctors removed a major vein, her right kidney and adrenal gland. Complications from her recovery led to gallbladder attacks, terrible chest pains and more surgery, which led to the discovery that her cancer had spread.
Today, she gets scans every four months and has found equilibrium on an oral chemotherapy. “I’ve been on this chemo longer than pretty much anyone else. Most people are only on it for about a year and I’ve been on it for five years. There’s no hard precedent of what the right treatment is. There’s no protocol. It’s an ongoing conversation with me, my husband and my oncologist.”
Through her diagnosis, treatment and recoveries, Jenn and her husband have been surrounded by a community of loving family and supportive friends. It wasn’t easy making the transition from helper to helped.
“I learned how to be vulnerable and to ask for help,” Jenn recalls. “Which was not in my wheelhouse. I always felt guilty asking for help and I’d taken it as a great point of pride to be independent. But I’ve learned that people want to do something.”
And “do something” they did. From homemade food (“When I was first diagnosed and going through treatment, people made meals for us. Once a week, our friends would bring us a meal and it was often enough that we could eat for a couple days. It wasn’t too much – and it was spaced out.”) to pajamas (“Sometimes you have to wear the hospital gown, but not always. Pajamas were a nice change.”), a hypnosis tape (“My friend is a psychiatrist. She tailor-made relaxation tapes that helped me envision my immune system fighting the cancer.”) and even taking shifts to watch over her (“After surgery, my leg was paralyzed, but I had to get up every two hours to go walk to deal with the nerve pain. We had people come stay with us for a week at a time and get up with me every other night. They’d take turns getting me up, helping me. Some of these people were taking their vacation time to care for me.”)
That patchwork of love and care made all the difference. “We were grateful to have so many people who were willing to make a sacrifice to take care of me – to take care of both of us, really.”
Jenn recently celebrated her 43rd birthday. After nine years of poking, prodding, treatment and surgeries, age is something to be embraced. “This birthday was one I never thought I’d see. I don’t mind getting older, because I am actually living to see another birthday. And that, to me, is a big win. I’m proud of making it this far.”
After nearly a decade of uncertainty, she and her husband are making “leaps of faith, making commitments.” They’ve adopted a dog Piper and are looking to the future. “I feel like we are finally able to start moving forward with our lives. We’re moving out of the holding pattern we’ve been in since I was 34.”
“My surgical oncologist was ever the optimist,” she recalls when asked about the best advice she’s ever received. His advice was simple, but profound. “Don’t let cancer take any more from you than it’s already taken.” Jennifer has put that advice into practice. “It’s easy to catastrophize things, to make something worse than it actually is. Yes, my diagnosis is terrible, but we really have to cling onto the things that are important to us – our friends, building relationships, taking opportunities of joy and not wallowing in self pity.”
It’s in that spirit that she began volunteering as a CHN Support Volunteer. “If I can make anything good out of this situation, if my experience can help others, that’s another way for cancer not to take away so much.”
Need perspective? Looking for some encouragement through a tough diagnosis or into survivorship? Get matched with Jenn – or another Support Volunteer who has been where you are. Click HERE or call 877-HOPENET (877-467-3638) today.
