Today we meet Jennifer, a young woman from Texas who is battling synovial soft tissue sarcoma in her right thigh. Jennifer thank you so much for sharing your story.
Eric D. Davis Sarcoma Foundation (EDDF): Tell us a little bit about yourself.
Jennifer P. (JP): My name is Jennifer. I am a happily married 30 year old, living in Plano, TX with my high school sweetheart. I have the best job in the world. I teach 3rd graders (our future). They are my lifeline and help me strive to stay positive. As far as hobbies go, my husband and I love to travel. We drive all over the US, and one of my goals is to travel to all 50 states. So far, I have traveled to 30 states and I plan on hopefully adding 4 more to my total this summer. We also love watching movies. If it were up to my husband,it would be scary movie night every night. However, once a week is good enough for me.
EDDF: What type of sarcoma do you have?
JP: I have a synovial soft tissue sarcoma in my right thigh.
EDDF: How did you first detect you had sarcoma? How old were you?
JP: I was actually misdiagnosed for two years. It started when I was teaching one day, and I had an intense pain radiating from my groin down my right leg. It got to the point that I was in tears and had to leave work to go to the doctor. I was 27 at the time and didn’t think it was a huge deal. She gave me pain medicine and a steroid shot. The pain went away for about 2 years, but then it came back with a vengeance. I continued to go to the doctor, but it didn’t help. She was convinced it had to do with my lower lumbar area and ordered a lumbar MRI. It showed a small cyst, and so I was sent to neurosurgeons for more testing over the next few months. Eventually, I noticed a small mass in my groin/thigh area and over 3 weeks it went from the size of a jellybean to a baseball. I had an emergency MRI done and the results were back within 20 minutes. My husband and I were called back into the office, and that is when we were told I had a sarcoma. I had no idea what that meant at the time. All I knew was it meant I had cancer.
EDDF: Tell us about your experience with sarcoma and sarcoma treatments.
JP: At first it was difficult. I tried to see an oncologist in Plano where I live, but he was less than helpful. It took him a month to get a biopsy scheduled and the results back. When I found out that MD Anderson in Houston specializes in sarcomas, I told him I wanted a second opinion. He told me he didn’t have time to gather all my information for me. My general doctor helped me get everything I needed, and I got an appointment at MD Anderson. By this time a month had past since I first found out. When I got to MD, my mother-in-law came with me; and, we were told to plan on staying up to 7 days for the initial testing and appointments.
On the 2nd day, I got the news that I needed to start treatment immediately because my tumor had grown to 12 cm (the size of a baseball). I would not be allowed to go home for 5 weeks. I would also not be teaching most of this year, and the worst thing told to me was that I may not ever be able to have children. With all that said, I knew I had no choice but to start chemotherapy right away. I knew the only way I would beat this was to stay positive about my situation. I always said everything happens for a reason. Whether we understand it or not, there is a purpose for everything.
All my friends, family, and colleagues were back at home while I was 4 hours away in a hotel with either my step-mom or mother-in-law taking care of me. There is no way I could have done it without them. My first round of chemo went ok, not too many side effects. However, the next 2 rounds were extremely rough on my body. I ended up in the hospital after each treatment for 5 more days. I was neutropenic (no white blood cells to fight off infection). I was actually low on all my counts. Each time I received red blood cell transfusions and tons of antibiotics. I spoke with my doctor after the 2nd time being hospitalized, and we decided to change up my chemo a bit.
Once they changed my chemo, my mouth sores and nausea were much better. I did end up hospitalized one more time, and quarantined to my bedroom at home another time. I had a total of 6 rounds of chemotherapy. Although it was tough, the chemo worked miracles. Originally, the tumor was 12 cm. The tail of it was entering my bone, and it encased my femoral artery. By my last round of chemo, it was about 3-4 cm, out of the bone, and only touching the femoral artery. My doctor was so impressed with the results that we both cried (mainly me, but she did tear up a bit). I am currently going through 25 treatments of radiation, and it is so much better than chemo. My only side effect so far is fatigue and a little skin irritation.
EDDF: How do you recommend others help out their friends or family battling sarcoma?
JP: This is a tough question because everyone is so different, but what truly got me through this battle is the support. My friends always kept me positive and helped me through my dark times. It was funny when people would ask me, “how are you”?, it’s like how do I answer that? I would always say, “as good as I can be”, or “I can’t complain it could be worse.” I got care packages throughout my chemo that helped me cope with the hard times. They included fuzzy socks, blankets, a bathrobe, nail polish, sucking candy, ginger candies for nausea, cards, balloons – since I couldn’t be around flowers, and so much more.
I knew I was loved because I was constantly hearing from my friends. It was hard for me to talk because of the throat sores so they would text me or just come sit with me at the hospital when I was home. My coworkers would send me pictures of my students to cheer me up. I think one thing I would suggest to friends or family that are helping is to do the paperwork stuff for the patient. I hated dealing with the insurance company, the hotels, and anything else that seems petty. It would be one less thing for the patient to have to worry about. The biggest thing is just stay positive – help them focus on the outcome and how great it will be when it is all over. Don’t allow anyone that is negative nearby; it’s like a poison. My husband always told me I would beat this and go on with my life normally. I believe him, and he is my rock. Another thing that helped significantly is a fundraiser that my sister-in-law started for me when we first found out I couldn’t come home. It was an online fundraiser that were could easily share and people could quickly donate to. Without that money we would be in a touch spot financially.
Why did you decide to participate in the Sarcoma Journey?
When I was told I had a sarcoma I honestly thought to myself what in the world is a sarcoma? It is such a rare form of cancer that only 1% of all adults are diagnosed with it every year and about 15% of children. I want people to become more aware of the different types of cancers. Sure we all know about breast cancer and brain tumors, but what about all the others? I want people to realize that you can fight cancer and win. You can have a positive outlook on life even though ultimately you are fighting for your life. My biggest thing is that I want people to learn not to take things for granted. My motto is: “Don’t sweat the small stuff, but enjoy the small moments”. I want to help educate others (I guess that’s just the teach in me).
What’s coming next for you in your battle?
When I finish radiation I have to wait 4-6 weeks before they can do surgery. I am not sure yet what that will consist of since so much has changed with my tumor. I have an appointment next week to meet with the surgeon to discuss the next steps. My goal is to have my surgery, quickly recover and finally get back to teaching. I miss my kiddos so much! It will also be nice to be able to go back home for good. I miss my husband, my fur babies (cat and dog), and all my family and friends.