I was first diagnosed with fibrosarcoma in April of 2008 after severe pain in my brachial plexus, right side. At the time, I was 48 years old and teaching middle school. I had just finished a master’s degree a few years prior to my diagnosis and planned to teach until I was at least 62.
My first treatment was to have a total clavicle resection, followed by 5 weeks of radiation at the Duke Cancer Center in North Carolina. They were unable to get clear margins, due to the tumor location. I was followed up every 3 months for CT scans and they started to notice tumors on my right lung almost right away. One year following my surgery, in 2009, I had a biopsy of one of the tumors in my lungs. It took three weeks to get the results, and it was at this time that the diagnosis was changed to EHE. In November of 2009, I began chemo (doxorubicin) every three weeks for 6 months. I continued to teach throughout all these treatments because at this time I had 2 kids in college. Although I was extremely weak and had terrible fatigue, I really think working helped keep my mind off of my cancer and made the recovery easier.
In December of 2011, I had a right lung resection and had 5 tumors removed. In 2012, almost exactly a year after my last chemo treatment, I was diagnosed with heart failure. At the time of this new diagnosis, my ejection fraction was 14. Normal for my age should have been 60. I was told only 5% of people who are given this chemo drug get heart failure and it took over three months to realize that I fell into this category because the symptoms were thought to be from the lung resection instead of heart problems. I started on heart medication, added a new doctor to my list, and still continued working. I also got a new German Shepherd puppy, who helped immensely with my recovery because I had to go for walks.
Throughout this time, I continued to have follow-up CT scans. At some point between 2012 and 2013, the tumors started showing up in both lungs and continued to show growth. In 2013, I opted for another lung resection on the right lung, followed by a lung resection on the left lung, hoping to get rid of the tumors. I think between 8-10 tumors were removed in two surgeries. I continued to have scans every 3 months, which continued to show tumor growth, but I was put on a watch-and-wait cycle. By 2015, after multiple corticosteroid injections in my hip and back due to pain, I was diagnosed with corticosteroid diabetes and started taking metFormin.
In May of 2017, I had a kidney stone removed and a follow-up MRI showed a tumor on my liver. I had a biopsy to confirm EHE and then had a microwave ablation. In March of 2018, I fell while teaching and got a concussion and subdural hematoma. I finally agreed that it was time to go on disability and stop teaching. This was the hardest decision I had to make. I was not sure how my husband and I could afford to lose my salary, but in hindsight, it was time to take a break and slow down. I continued to have scans every three months, but they now included contrast with each one because of the liver involvement. I now have innumerable lung tumors and two liver tumors that are not in good locations for ablations. Between 2018 and 2019, I experienced several falls from dizziness/lightheaded and these were exacerbated by the fact that my right arm was weak and I was unable to prevent faceplants. I fell a total of three times with the worst fall causing another subdural hematoma, fracture of my cheekbone and orbital socket, which required surgery to repair. Without a clavicle, I continued to become weaker on my right arm and lost range of motion. Following a change in my heart medication, I found it easier to deal with these symptoms and decrease falls.
I remained on every three-month scans until 2022 and then the amount of time between scans was decreased to where I only have scans every 6 months and my tumors have been stable for the past two years. Looking back now, I truly attribute metFormin to slowing down the rapid growth of tumors I experienced in the early years of my disease.
Who or what helped along the way?
Positive outlook, working through treatment, family support, dogs, faith, and friends.
What do you fear? How do you feel about living with EHE?
I have three children and family is very important to me. When I was first diagnosed they were still in high school and college. When my tumors spread to my lungs, I was told by my medical oncologist that I had 3, 5, maybe 10 years. That news was difficult to process.
Talk about a high point and/or a low point in your journey and how it made you feel. What did you learn?
I always feared that I would run out of time, but now, 15 years after being diagnosed with stage 4, I have 7 grandchildren. I have been able to watch my own children become parents and that has been the highlight of my life. I’ve learned to start enjoying every day and finding the simplest of joys in the everyday things. Cancer diagnosis, especially one so unpredictable, teaches you to treasure every moment you are still in the fight.
What are some words of advice for someone new to EHE?
Don’t ever give up hope and surround yourself with only positive people who truly care for you. The motto “Just Live!” really does apply to this cancer because of all the unknowns. Stay positive and pray.
