My story has a somewhat convoluted beginning. I had always been a heavy person, and at age 43 I weighed almost 300 lbs. In December of 2006, my kids and I traveled to Phoenix to spend Christmas with my two brothers, their families and my mom. While we were there, we took many family pictures. After we returned home and I got a chance to look at the pictures, I finally made the decision to start the process for bariatric surgery.
Bariatric surgery is a long process with surgeon, nutritionist, and psychiatrist appointments. I finally got my last clearance at an appointment on the morning of June 1, 2007. I returned to work and got ready to schedule my surgery.
Shortly before lunchtime one day I started having extremely sharp cramps. My cycle had been pretty irregular, but I had attributed this to fibroids, which I had been diagnosed within 2000. I decided to go home and lay down with a heating pad and some ibuprofen. Somehow I thought that this might be something more and I called my clinic quickly to see if I could get in.
I was seen by a new doctor, and after a blood test, I was told my white blood cell count was elevated. The doctor thought that maybe the pain and elevated count was due to diverticulitis and ordered a CT scan. By the time that this was decided, it was around 3:30 p.m. and I knew that my kids (daughter, 16 and son, 13) would be home. I didn’t want to leave them home alone, so I picked them up and took them with me to the radiologist.
At the radiologist, I drank that icky white fluid that is supposed to taste like banana and then waited. I started to feel very uncomfortable and it was painful to sit back. I was called in for the scan and waited for the clinic to let my doctor know the results. Probably an hour later, I was told that the doctor wanted me to get an ultrasound and I did. After that, there was an internal ultrasound. My kids were still with me, so I called my dad to come and take them home. This was around 9 p.m. and I figured I would get sent home after the next ultrasound. I started feeling horrible: nauseated, pale and clammy. While I was waiting for results, my dad showed up to pick up the kids and took them home for me.
Finally, they told me that my doctor was on the phone. She told me that they thought I had a twisted ovary and that the pain I was feeling was due to the ovary dying and that it needed to be removed. She told me that she would meet me at the hospital next door to do emergency laparoscopic surgery to remove it. By that time I was in so much pain that I just said ok, got in my car and drove the quarter mile to the hospital.
On the way, I was so scared that I started calling people. I called my brother and sister-n-law – they weren’t home. I called my mom (who lived in Texas at the time) and she wasn’t home either. I called my dad to run back over to my apartment and get the kids because I was not coming home. Once I got inside the hospital, I couldn’t use my cellphone anymore. They got me a gown and all I could think of was how odd it was that no one knew I was there. They put me under and sent me into surgery for the procedure.
Once I was in the operating room and they were starting the procedure to remove what they thought was a dying ovary, they found my entire abdomen full of blood. I had had an ovarian cyst that ruptured and had been bleeding internally for around 10-11 hours by that time. They stopped the laparoscopic procedure and made a much larger incision to remove what was left of the ovary and the fallopian tube. I was hospitalized for five days.
A week later I went back to the surgeon’s office for follow-up after surgery. The surgeon came in and asked how I was doing. I said I was fine other than being sore, and then he dropped the big news. He told me that the pathologist had found something unusual. It was not officially ovarian cancer, but close enough that he wanted to act as if it was. I was immediately taken out of the exam room to get a CA-125 test and then taken down the long hall to wait to schedule more surgery. I was totally dumbfounded. I was called into the surgery scheduler, who started talking about scheduling surgery in five weeks. I didn’t know what she was talking about: a salpingo what? Why an appendectomy? And a hysterectomy? I just sat there and made the comment that I had no cancer in my family history. Her response was: “Now you do.” I left that day with an incision check, a bunch of pamphlets and an appointment for more surgery.
Over the next few days and weeks, arrangements were made for my kids. My sister-in-law, who works for an OB/Gyn, had her boss look at my medical records from the first surgery and she recommended an excellent gynecologic oncologist (never heard of such a thing). I went in to meet the oncologist and decided to have her perform my second surgery. Between then and the date of the second surgery, my mom moved back to Minnesota from Texas. In the meantime, the oncologist had her own pathologist review the slides from my first surgery and changed the diagnosis. The day of the surgery, she told me that it was officially ovarian cancer, but that we were going to treat it the same way we had planned.
The next few days were a blur. I found out that everything that they removed came back with zero malignancies. Because there was a rupture of the ovary and my abdomen was so full of blood, they could not test for any loose cancer cells, even if they had had any suspicions then.
I was diagnosed as having stage 1C endometrioid carcinoma of the ovary. I was given the option of having six treatments of chemotherapy. Though I was not looking forward to whatever chemotherapy was going to be like, I still didn’t want to take the chance and opted for the six rounds.
September was a busy month. My short-term disability had run out, so I was back to work full-time, and I started chemo. The side effects were different with each treatment. I had awful bone pain after the first and my scalp broke out after the second. My last treatment was in January 2008. My kids and family were counting the days until I was done.
February brought some good news. I had my first PET/CT scan and another CA-125. The results of the scan were negative and the CA-125 was low, at 6.9. Then it was back to being a single mom of two teenagers, working full time, and anticipating the next test.
However, things are not the same. I find myself not worrying about irritating co-workers or crazy relatives that I really have no interest in being around. I want to fix the things that I just had not gotten around to. I want to change the way that my kids and I interact. I don’t want to waste me time with bickering, jealousies or attitudes. Life is too short!
MOCA is one of the bright spots that I gravitated to. I am really an extremely shy person; I cannot usually open my mouth in front of people I don’t know. I have felt welcome within this organization. I loved participating in the walk the first September after my surgery and have loved all seven after that. I have enjoyed myself at a couple of the health fairs and I had the chance to meet survivors and relatives of survivors. I find that I can talk to people more easily now. People want someone to listen. I can do that. They want answers to questions; I’m getting better at that.
Although every diagnosis is different, we have a common enemy. The statistics say that this disease is rare, but I have not gone anywhere lately where someone has not been touched in some way by this disease.
I try to keep going forward. I want to help find a test, to find a cure and to support others with this disease and then see what comes next.
I wrote my story back in 2008, so I wouldn’t forget the details (I didn’t want to forget it due to chemo brain). I wish I had done a few things differently, but it’s hard to see the big picture when you’re in the middle of it all.
I had my bariatric surgery four years later and lost 80 pounds. That was not as high as my ultimate goal, but it did get me off all my diabetic medication. I changed jobs and both of my kids graduated. I am still NED (no evidence of disease), and I am still involved with MOCA. Thank you to MOCA for all the support and new friends! I look forward to the future.
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