I had life-saving abdominal surgery on August 25, 2017. My primary surgeon, Dr. Greene, with the help of 3 other surgeons, removed a 32lb tumor and 8lbs of fluid. The tumor turned out to be a rare, highly aggressive cancer called uterine myxoid leiomyosarcoma. It was high grade/stage 2b.
With surgery came a subtotal, or partial, hysterectomy (everything but the cervix). I was too malnutritioned and bleeding too heavily for Greene to risk full removal of the reproductive organs or of the tumor (he got 95% of it). I begged various specialist surgeons over the course of a year to take the rest of the tumor out but no one would. Thus, it metastasized and more tumors developed. I failed 3 chemo regimens, and by Summer 2018, I was stage 4.
I went on Social Security Disability Insurance (SSDI) in August 2018. I tried one last chemo, this time targeted, in October/November 2018, but developed critical kidney failure and critical electrolyte issues because the tumor was compressing my ureters, in November 2018.
On Wednesday, November 14, 2018, I was admitted to the ER, then ICU, for the above problems, as well as other complications due to my tumors. As of January 17, 2019, I am still in the hospital but no longer in ICU.
On January 23, 2019, Teresa passed away. While her cancer certainly played a part in this, gross medical malpractice on the part of the hospital played a bigger part.
You can learn more about her experience on her timeline.
Update from Amanda in 2023: Looking back, I realize how little we really understood about what happened in surgery, and with cancer (despite losing several friends and family members to different types), that we believed it hadn’t metastasized. Greene told us he couldn’t cut the tumor away from the cervix because he was afraid she would bleed out. We later wondered, and I wonder still, why he didn’t just take the cervix too and put in a cervical cap. He’d already taken the destroyed uterus (the tumor had grown through it), her ovaries, fallopian tubes . . . why not just take everything? What he did instead was to leave part of the tumor behind, which means it spilled all it’s cancerous insides into Teresa’s abdominal cavity. She never had a chance after that. In hindsight, with the more I know, it’s sort of like she got a morcellation hysterectomy. He may not have ground the tumor up, but he cut it apart inside her body because he was sure that chemo would take care of it, without knowing what kind of cancer it was. Not knowing it was chemo-resistant. He took a terrible risk cutting into that tumor, and it cost Teresa her life.
The tumor regrew and no one was ever willing to operate again, even though surgery is the gold standard treatment for leiomyosarcoma.