Life’s So Good!

By 17-year Thriver, Kristine Nesse

1/10/23

I’m an educator. I have always considered myself one. In 2006, at age 55, after decades teaching, I had never used a sick day. Every year, I would have to buy back leave, reserving the allowable number of days “just in case”.  So of course, my low abdominal discomfort was bearable for quite a few months, until summer arrived for my doctor visit. 

My awesome general practitioner did a physical exam and pap test. There was no explanation for the persistent pain. She tried the conical scrape procedure (can’t remember name), but it hurt too much, so she referred me to a gynecologist.  He managed the procedure with a dismissive, “It can’t hurt that much.” Again, nothing. He sent me for ultrasound. Looked like a fibroid. He recommended a total hysterectomy “the easy way.” Of course, the resulting hemorrhage necessitated a big slice and dice anyway. In the hospital room, an oncologist showed up and told me my surprise; the diagnosis was uterine leiomyosarcoma (uLMS). It was stage III, high grade, 15/10 mitosis count and ER/PR negative.  I asked him to spell it for me, and the journey began.

I suspect these initial steps are familiar to all of us who have experienced uLMS. For those of us who were around in the old days, the quest to find information was daunting, scary and hard.  Luckily, I found Dr. Dee’s LMS website, and the ACOR list group. These saved my life. The one thing that I learned was crucial, was finding experienced sarcoma specialists and sarcoma centers for advice.

I knew enough to listen to my options as detailed by the first oncologist (who had never seen LMS), and get my rear to Seattle Cancer Care Alliance (SCCA) for a second opinion. LMS expertise was short at SCCA, but I lucked into Dr. Butrynski, who was experienced. He left soon after. I called and emailed Dr. Schuetze, who had left SCCA for University of Michigan. He was generous with his time and knowledge. The consensus indicated adjuvant gemcitabine and taxotere (Gem/Tax). Knowing what I do now, I’m not sure it was a good move. Of course, I wanted to fry any circulating LMS cells. I was on board for chemo.

After this course of chemo, in January 2007, my PET/CT scan indicated NED – no evidence of disease. Soon after, I took the Bill Peeple’s Cocktail (BPC) with prescribed TM in an attempt to stave off angiogenesis. The theory is that if a tumor cannot get adequate blood supply, it can’t grow. I tend to be science driven, and even learned to maneuver PubMED research. There was no research on the combination of drugs in the BPC, though individual drugs in his “cocktail” did have some positive reviews.

My first 3-month CT scan indicated NED. Very soon after that, I felt a ‘flutter’. My local oncologist agreed to do another CT scan. In March 2007, a recurrence was diagnosed. I hadn’t even been slow-dancing with NED yet.

At this point, thoroughly terrified, and kind of pissed, I went for the ‘big guns’. With the help of my brother’s frequent flyer miles and a second-opinion grant from Sarcoma Alliance, I traveled from SCCA in Washington state to UCLA and Cedars Sinai cancer centers in Los Angeles, California, to confer with the fabulous Dr. Forscher, and the elder and younger Eilbers surgeons. Further chemo was recommended. A single agent was the protocol at Cedars Sinai, and multi-agents was what the surgeons at UCLA preferred. I went for the combination of Adriamycin, ifosfamide and mesna (AIM).

After four rounds of AIM, the Eilbers saw me again. The scan indicated enough tumor shrinkage to do surgery. Going into surgery in July 2007, I asked Dr. Fritz Eilbers for wide margins and 25 more years. He performed a laparotomy and colon resection, enbloc, with clean margins. At this point, wish I’d asked for more than 25 years!

I wasn’t done with AIM yet and had to complete another course of chemo once I returned home. AIM was tough. It hit my blood counts hard. I had many blood transfusions. Low patelets were a challenge that presented a bit more problem solving. At one point, my platelets were undetectable, and white and reds were at ‘panic levels’. The lab folks couldn’t believe I’d managed to travel an hour for the blood draw, and walked into the hospital. My GP slapped me right into isolation. After several days I had to sign a “yes, I know I could die” letter before she would let me go home. Stubbornly, I believe I heal better at home.

In October of 2007, I resumed the BPC with the over the counter supplements only.  I stomached about 60 pills daily for another year and a half or so, then gradually phased it out. Again, have no idea whether this regimen helped me stay NED. It was kind of like carrying a lucky rabbit’s foot.

Finances were the least of my worries. My accrued sick leave paid for a year of work even though I was too sick to be there except for an occasional sub day. Also, our financial advisor had insisted I have disability insurance at some point in my 40’s to protect us, should I be unable to work. She also pushed me to apply for Social Security Disability. I never would have done it on my own, but was approved instantly.

Yes, side effects impacted my quality of life, and still do, to a minor degree. It took about two years for blood counts to approach anything close to normal. I have what is probably permanent peripheral neuropathy in my foot. I’m still establishing a new norm for my bowels. While my cognitive gaps have improved, chemo somehow undid my number memory. Maybe not associated, but my bone density deteriorated. Otherwise, I am now doing the tango with NED.

I have learned some lessons that could benefit fellow travelers. First, listen to your body. Second, you are in charge. Doctors do not care nearly as much as you do about your survival. Learn as much as you can. Use the resources Sharon Anderson and others have gathered to help you. Rely on that hive knowledge. Third, self-care is a good thing. I walk and do a weights class. A monthly massage and frequent Epsom salt soaks keep the muscles happy. I garden like a maniac and read to one great-grand child or more, every day. Fourth, do a bit to help fellow travelers. My blood and tumor have gone to Stanford for research. The recent news about LMS circulating DNA absolutely floats my boat! Amazon Smile is so simple to do to raise money for research.

So here it is 2023. My sister, who never sees a doctor, just turned 80. We were talking about what we’d do if we got really sick. She asked if I would go through it all again. The answer is yes. This bonus time is completely joyful. My husband died a year and a half ago, but I have three grandkids along with partners, and two, soon to be three great-grands, all living here in what we call ‘the family compound’.  It’s wild, always busy and never lonely.

Life’s so good!

Kristine and her family compound of grandchildren