As a part of our Faces of Courage series, we are featuring a patient story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength and passion for life.
Our Patient of the Month for May is Chelsea Ozeri. Here is her story:
In September 2018, after a hiking trip in Ithaca, I noticed that walking uphill, even for just two minutes, was extremely challenging. I was short of breath and had this overall feeling of fogginess. After about two more weeks of experiencing similar symptoms, such as a racing heartbeat and head-rush from menial tasks; like walking two blocks, or up a flight of stairs, I went to the ER at Mount Sinai Beth Israel, where I actually work managing the CPEP Mobile Crisis Team.
After a series of blood tests and scans, the doctors told me I needed a blood transfusion because my red blood cell count was at just 5. I was referred to a hematologist with a diagnosis of iron-deficiency anemia. After an unfounded colonoscopy/endoscopy and five iron infusions over five weeks, I was left with not many answers. However, six weeks from that initial ER visit, I started to feel a significant pain in my pelvis, which would be the telltale sign of what was to come.
A vaginal ultrasound picked up the 7 cm tumor that appeared to be touching my right ovary. After a series of scans and probing, the doctors were able to confirm that I had a tumor attached to my small intestine. I was terrified. As a young adult who has literally never had any medical issues in her life, I was in shock. All I could do was cry into my husband’s chest and brace myself.
On November 5, 2018, my brother’s birthday, I underwent open surgery to remove the tumor, and a large section of my small intestine. The surgeon confirmed that I had Stage 4 GIST, since the tumors had metastasized to my liver. Six weeks post-op, I had my eggs retrieved to keep those “babies” safe for when I’m ready to become a mama. Today, I am on 400 mg of Gleevec, and scheduled for my second scan since starting the medication. So far, I am responding well to Gleevec, with fatigue being the most significant side effect. I honestly feel lucky because I know a lot of you out there are dealing with much worse; but I guess it’s all relative.
I cope with GIST by staying positive. As a 32-year-old woman, I have so much life ahead of me, so I have to believe that it will be a long and full one. On a daily basis, I practice yoga and meditation. I also recently started acupuncture, which has helped with the anxiety I developed post-diagnosis. I try not to make my everyday about cancer. In other words, I’m making healthy choices for myself, but I do so in moderation. Sure, I’m eating well, but I also have a cheeseburger and a glass of wine every now and again – everything in moderation. I cope by not taking myself too seriously… a sense of humor is so important. I spend quality time with my husband, my dog, my family, and friends, and I do my best to be fully present in each moment.
Advice to Fellow GISTers:
It might sound harsh, but don’t feel bad for yourself. Even though there is no proven cause for GIST, and we are just “unlucky,” take the diagnosis as a sign that maybe you can be doing something differently, even if it’s something small. Since my diagnosis, I’m eating healthier, meditating/exercising more regularly, and choosing more consciously what I want to do with each day I’m given. My advice is simply to live more intentionally.
I have been studying acting for the past 4 years – just for fun. I also like to cook, play with my dog, and ride on the back of my partner’s motorcycle; although I am patiently awaiting my first ride post-surgery. Sometimes I post on Instagram too – you can follow me @miss_madzeri .
“Live an intentioned life, and don’t take yourself too seriously.”
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases, and each patient has a unique set of symptoms and manifestation of the disease.
Criteria for Patient of the Month
- Patient must be a member of the LRG Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has a GIST/PRiME account
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Interested? Contact Denisse Montoya, LRG Patient Registry Director for more information: firstname.lastname@example.org