My Name is Heather Lord. I am a 50-year-old female and I currently reside in Tumwater, Washington. I really enjoy a long run outdoors, listening to music and spending time with my grandchildren. I also enjoy having dinner with my folks every Sunday and spending time with my two adult children. I was diagnosed with Leiomyosarcoma in September 2021. In the fall of 2020, I started experiencing some mild discomfort on the right side of my abdomen. I didn’t think much of it at the time because the pain was very mild, and it would come and go. As the months passed, the pain became more intense, so I made an appointment with my Primary Care doctor. After doing some blood work and an x-ray, he could not find anything wrong. My doctor told me to give it some time, and that it’s most likely pulled a muscle.
A few months went by, and the pain became more frequent. I asked my doctor for more testing, but my insurance denied the request for a CT scan. He suggested that I go to the ER if the pain was unbearable, so that’s exactly what I did. Unfortunately, they could not find anything wrong in the CT scan. By this time, I was getting quite frustrated, and I felt like the doctors were frustrated with me. I kept telling them, “Something isn’t right, I know my body and this pain is not normal!” I realized I needed to advocate for myself, so I asked for a referral to a see a Gastroenterologist. After having more blood work, an upper endoscopy of my stomach, a HIDA scan to check the liver, gallbladder and bile ducts, they found nothing.
I was not satisfied with their answer, so my last attempt was to ask for an ultrasound. In late August 2021, I had my ultrasound, and low and behold, the test showed a large mass growing on my Inferior Vena Cava (the large vein that carries blood from the torso and lower body to the heart). There was a great sense of relief to know that my pain was validated, and I wasn’t losing my mind. A biopsy later revealed that it was a rare cancer found in smooth muscle tissue.
In December 2021, I had a major surgery to remove and replace six inches or so of the Inferior Vena Cava. My right kidney also had to be removed because the renal vein was slightly involved. My surgeon was confident that he removed all the cancer, but in September 2022, my PET scan revealed 3 new growths in the same area.
I asked my Oncologist for a referral to Seattle Cancer Care Alliance because they specialize in treating sarcoma. I was very impressed with Oncologist, Dr. Michael Wagner. He took my case to the tumor board and after speaking with the Sarcoma team, they found me ineligible for radiation or surgery at this time. Dr. Wagner is recommending 6 sessions of chemo to hopefully shrink the cancer and eliminate further spreading. I will be having my first dose of Doxorubicin on November 16th.
It all seems so surreal. So much has happened in a short amount of time. All the lifelong plans I have had for myself have come to a halt. Now it is about survival and staying strong for my family. I have more days of feeling hopeless than hopeful. My kids think I am some kind of supermom and can overcome just about anything, so I feel the need to put on a show of strength even when I feel otherwise. I also worry about my parents and how this affects them.