Sep 18, 2017 Latest post:
Apr 18, 2018
This was going to be the year we (Bob and I) finally started to worry about us, we lost a bunch of weight at the beginning of the year, starting exercising like it was our job and learned that eating healthy makes you feel way better than eating crap. We were walking every morning, hiking or biking every night and on weekends and I joined a Boot Camp Class in town.
At the beginning of July I started having some "girl" problems, but brushed it off, figuring I was peri-menopausal and these were normal changes in my body. The morning of July 24, I woke up to go to Boot Camp and just couldn't get out of bed. I couldn't wake up and was in pain, I felt like I had rocks in my belly. This continued for about 10 days. I finally called the doctor and got an appointment for the end of August. By the second week of August the pain was back and although not debilitating, it was keeping me from doing the things I loved to do. I called the doctor and told them I needed to see someone immediately; they gave me an appointment with the nurse practitioner for the next day. The NP checked by belly and did an ultrasound. The ultrasound showed I had several large fibroid tumors (benign uterine tumors), which had grown since my last ultrasound 3 years previous. We decided hysterectomy would be my best option and made an appointment for the end of the month so I could see the doctor and get it scheduled. By the time my appointment was here (2 weeks later), I had gained 10 pounds, even though I hadn't been eating much, I was very uncomfortable and looked like I was 8 months pregnant. The doctor told me the fibroids were pushing my organs up, much like when you are pregnant (I had carried twins almost to term, this was not the same). We scheduled a hysterectomy for September 20, 3 weeks away, i wasn't sure I could make it that long.
I suffered through the next week and on September 5, called my doctor's office, crying hysterically, because I had gained another 10 pounds, the pain from the size of my belly was unbearable and I couldn't get comfortable. He told me he could give me some stronger drugs for the pain and just wait until my surgery date, or go to the ER, thank goodness I chose the ER.
When I got to the ER, one of my closest friends happened to be my nurse, she was a godsend. As soon as the ER doctor came into the room and looked at my belly, he said, this is NOT fibroids; you have something else going on. They sent me for a CAT scan and then we waited. The doctor came back in the late afternoon and told me they saw a mass in my abdomen and were sending me to Brigham and Women’s Gynecological Oncology. We were shocked; cancer wasn’t even on our radar.
We got to B&W, everyone was amazing, I saw the doctor the next day, he told me he was concerned by what he saw, but there was so much fluid in my belly it was hard to tell exactly what it was. He scheduled a paracentesis (a procedure to drain the fluid from my belly) and biopsy for the next day. They took 8 liters of fluid from my abdomen and after the procedure I felt like a million bucks. The pressure was off my abdomen, I could sit up and I could eat. I went home that afternoon.
They told me the fluid would continue to accumulate until we shrunk the tumor, and I would have to have it drained every few days for a while. We scheduled another paracentesis for Wednesday the 13th. I felt good for most of the next 6 days, slowing down a bit as my belly filled up. I had more people reach out to me with support, meals and definitely some laughs. I have the best family and friends, I feel like I have an army fighting this with me.
I had the procedure on the 13th, they took another 8 liters and again, I felt great. The relief seems to be lasting longer this time. When I got home the doctor called, he had the pathology back from the fluid but not the tissue. It showed signs of gyn cancer, but not sure which one. That didn’t matter because the treat all gyn cancers the same. He said there was a clinical trial that he thought I would be great for, it is the regular chemo they would use for these cancers with the possibility of immunotherapy, I said sign me up.
We go to the doctor tomorrow, Sept 18, to get all the details and put a plan in place. I will be having another paracentesis on Tuesday and they will put a port in my belly so that we can do the drain at home as needed.
I will post an update tomorrow after we have more information.
I need to thank BobbyG, he has been an absolute rock since day 1, taking care of all things I can’t do around the house right now, being my shoulder to cry on and making me laugh as much as possible, I love you and don’t know what I would do without you!!