THE NATIONAL LEIOMYOSARCOMA FOUNDATION SALUTES THE LMS PATIENT COMMUNITY
4 years going with several surgeries and procedures to maintain, but I’ll smile and have some fun every chance I can get. Started out right forearm, through my right lung, media stinum, and now brain. Leiomyosarcoma.
I love this photo because I felt well, happy, confident and thrilled to be alive and meeting this beautiful camel in the picture (his name is Poudre). It was taken north of Cabo San Lucas in December 2016 while I was on a camel riding and tequila drinking excursion. It was only the second international trip I’d ever taken alone and I had so much fun. Shortly after that, I began to feel more tired than usual but chalked it up to a recent divorce, staffing issues at the office, and other life matters. In the spring of 2017 I had a strong premonition screaming at me that if I wanted to live near the sea, I should do it now. I heeded, and ended up in a familiar place in southwestern Florida, on an island with automobile access. The sound is only a short walk away, and the open Gulf of Mexico but a short drive or ferry ride away!
While I was driving down here with my dogs and what items I hadn’t put in the moving pod, I started bleeding and had a serious bleed during unpacking. I’d been done with menses since July 2015. After receiving care for an allergic reaction to insect bites, I addressed the bleeding. In October 2017 I received a firm diagnosis of uterine leiomyosarcoma. The 20 cm tumor was removed in November 2013 and found to have invaded the vascular and perimetrial systems. Adjuvant chemotherapy of gemzar and taxotere with supporting neupogen injections began in December 2017, set up for 6 rounds of 2 courses of the drugs. I just finished the second course in late January, and as with the first course, developed fever of unknown origin two days after receiving the taxotere and ended up hospitalized because of the timing (weekends).
Between the chemo, blood tests, and IVs, the veins in my arms are highly damaged and useless already, especially since a superficial thrombophlebitis in the left arm developed. So, I’m awaiting scheduling for a mediport and then chemo will resume on a schedule that will, I hope, keep me out of the hospital after taxotere! Truthfully, the hospitalizations made me want to give up on chemo because I have never been one to be sick and this was just unbearable. However, I’m digging in in spite of it. This isn’t just for me. It is for my sons, my friends and family…and for future uLMS patients who may benefit from anything learned from my case.
Below is a photo of me now. I’m in a “can’t stand wigs or head covers” mood this week. I don’t like this photo but am glad to be alive. I look forward to getting back to looking and feeling like myself.
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The National LeioMyoSarcoma Foundation (NLMSF) is a 501(c)(3) Non-Profit Charitable Organization and a member of the GuideStar Exchange.
National LeioMyoSarcoma Foundation – NLMSF
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