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Jun 1, 2017 Latest post:
Mar 17, 2019
For those who know me well, I typically shy away from social media. However, this website seems like a good way to keep everyone updated. (Thanks Jill and Auntie Joanie for sharing this with me!) The short version of the story is that I was diagnosed with an extremely rare form of cervical cancer in May 2017. The long story of my diagnosis is below.
Please put your words of hope and encouragement in the comments and well wishes below. I am truly lucky to have so many caring people in my life. You may also wish to make to small donation to Caring Bridge if you are so inclined. Jason and I will let you know about our other needs.
The long story...Getting a final diagnosis has been an adventure. It all begin during a pelvic exam in March 2017. My GYN, Dr. Mary, found a tumor on my cervix - about the size of a lime, in her words. Dr. Mary attempted to biopsy the tumor and sent me on my way. Jason and I were heading to Florida the next day for my sister-in-law's wedding, a quick detour to see the Excellent Eckers in Miami, and a visit in Naples with my snowbird parents and aunts and uncles. The wedding was dazzling, the Eckers were fabulous hosts, and we had some perfect weather for days at Naples Pier Beach. After getting back to Denver a week later, Dr. Mary contacted me to say that my biopsy results were "inconclusive." This word would repeat itself several times throughout my diagnosis adventure. Basically, it meant that the lime growing on my cervix wasn't definitively cancer, nor was it definitely benign. The sample tissue was sent off to the Mayo Clinic for further analysis. An agonizing two weeks later, the Mayo Clinic said essentially the same thing: inconclusive. Dr. Mary referred me to a GYN Oncologist and that's when the real adventure began.
All through April I felt like a ping pong ball - back and forth to the doctor's office, the labs, and trying to stay sane not knowing what was going on. I met my GYN Oncologist, Dr. Julia, and she attempted another biopsy. I had a pelvic ultrasound, an MRI, a PET Scan, and enough blood work to satisfy a hungry vampire. At least at this point Dr. Julia could order everything STAT and I usually had my test results in a day or two. Meanwhile, some of my besties (thanks Deb, Laurie, and Stacy!) helped out with my state of mind and we had a sushi comedy night out on the town in the April snow!
Despite Dr. Julia's best effort, her biopsy also came back inconclusive. The PET Scan showed my tumor and also a problematic lymph node, which was also promptly biopsied. The lymph node biopsy involved a large needle in my groin and a lovely fentanyl/versed cocktail. (Thanks Lori for my ride home while Jason flew to Knoxville!) Thankfully that was negative, which was good, but Dr. Julia was cautious at this point. The tumor could still be malignant even if the lymph node was benign. Dr. Julia's working theory was a bizarre fibroid or something else that couldn't be diagnosed with the small biopsy tissues. Did I mention there was bone tissue in the tumor? Yeah, so there was that weird thing too.
Without a conclusive diagnosis, Dr. Julia consulted with other docs and recommended surgery. The surgery plan included yet another biopsy in the operating room, a sentinel lymph node biopsy, and if both of those were negative she would proceed with a hysterectomy to remove the tumor. The surgery was scheduled for May 8th and emboldened with husband by my side and wearing my Soft Kitty, Warm Kitty tee shirt (thanks, DVP team - Chelsea, Beth & Melissa!) I headed to the hospital. By 4pm that afternoon, I woke up without a uterus, a cervix, Fallopian tubes, one ovary, and an appendix. While I had numerous organs removed, Denver was covered in a baseball-sized hail storm. Thank goodness for covered valet parking at St. Joe's! I spent one night the hospital and busted outta there the next day.
At home, I had amazing caretakers - Jason and my parents - who were at my beck and call so I could recover and also find the strength to yell at CNN's coverage of the unraveling of democracy. My recovery was swift due to the many flowers (thanks to Judy & Bob, Deb & Ron, Sean & Deb, Roge & Gabriela, and my lovely sister and brother in laws!), the ultimate chicken soup (GF, of course, thanks to Lori!), visitors who lifted my spirits (and brought the BEST post-hysterectomy present ever - thanks Stacy!), an acupuncture treatment (courtesy of Deb!), all the thoughtful cards (too many folks to thank here, but you know who you are and special shout out to the cutest nephew ever and his accurate drawing of my dress and shoes - love you!), and all people who called and texted often to chat. I can't say this enough - it truly helped to have so many people reach out and support my healing. Despite all the well wishes, the pathology on my tumor came back positive for a rare form of cervical cancer called an undifferentiated endocervical sarcoma. I am the 18th person in the past 40 years to be diagnosed with this type of cancer. Since my diagnosis, family/friend doctors have been overwhelmingly generous with their time and advice - Sam, Phil, and Gerald, you truly picked the right profession - you are the best! Over the next few months, I'll give everyone updates as I'll likely be on the slow march toward radiation and chemo.