Hi everyone. This is a site to keep you updated on my diagnosis, treatment and, ultimately, my cure of EHE cancer.
I was diagnosed on 12/29/17 with Epithelioid Hemangiondethelioma (EHE) cancer. This is a very rare vascular sarcoma. There are approximately 200 people a year diagnosed with this cancer but we think it is much more prevalent but often misdiagnosed.
This part of my story started when I visited the ER on 12/18/17 for a pain in my upper stomach/side. I thought it was a stone of some sort. The CT scan at the emergency room showed some concerning lesions on my liver (also that I was terribly constipated :)). The emergency room felt that I needed an MRI so they transferred me to Riverside Hospital. The MRI showed some definite lesions (tumors) that I was told "looked" cancerous so they would need to do a biopsy and a few other tests. I was told that cancer very rarely ever starts in the liver so they wanted to complete a lung scan to see if it was possibly lung cancer that had moved to my liver. I completed the lung scan and it was clean. Thank god! I then had my biopsy because they felt like this would tell them what type of cancer it was and where it might have started.
I left the hospital on 12/20 after completing my biopsy and they said it would take about a week to get back. The first biopsy results came in on 12/23 and they said it was spindle cell carcinoma with unknown origin. The biopsy was sent to Mayo Clinic for further review. On 12/29/17, I received the call from the Oncologist at Riverside that I was diagnosed with EHE. I knew the cancer was rare when the oncologist told me that she had never heard of it, had to google it and that Riverside could not help me in my treatment. She advised me to go to The James Cancer Hospital in Columbus. Thankfully, I had already started that step and had been in contact with the James since my release from the hospital.
My friend, Hannah, at work made a call to her sister who works at The James. Her sister put me in contact with a woman named Kristen Thatcher. Kristen has been instrumental in opening many doors for me and I often call her my angel. Kristen is the Director or Patient Services and became my biggest advocate in the first few weeks when I could not be that for myself. With her help and many others, I have been successful in getting a lot done in a short amount of time.
Since my diagnosis on 12/29/17, I have:
- visited the Cleveland Clinic for an opinion from an Oncologist there
- been evaluated by The James (oncology and the liver team)
- started a trial medication through the James
- been evaluated by the Cleveland Clinic for liver transplant and added to their transplant list!
- been evaluated by the Mayo Clinic in Minneapolis oncologist and liver team
- been evaluated by the Ohio State University transplant team and added to their transplant list!
I would say it has been a busy two months! I could not have done it alone and I am grateful for the wonderful people I have in my life. My support system is amazing and I am forever grateful for my family and my friends. The rest of my story starts in the journal entries below.