June 17, 2011 was, to use the cliche, the day my old life ended and a new and unknown journey began. I had been having pain in my right side for awhile but didn’t think too much of it because I had had precious ovarian cysts. At the time we also had company and I have a bit of an anxiety disorder, so I thought that was probably a lot of what was causing the pain. It wasn’t until I physically got sick and was lying on the floor that I just knew something wasn’t right.
It was a Friday, because, really, what OTHER day do emergencies happen on? And I knew there would be no chance of getting in to my doctor who I was in the process of leaving. But that’s another story. I headed to Urgent Care but there were about 30 people waiting, they said it would be at least and hour and I had to pay up front. I didn’t like that idea too much and I was never super impressed with the place so I continued onward to the emergency room and one of our hospitals. I told them I knew it wasn’t my appendix, that had left me three years earlier, and explained the ovary situation. I was immediately hooked up to morphine, told to have someone pick me up, and take in for CAT scan. By the time my husband arrived, the results were back. I had a large (40mm) tumor in my colon that needed to be seen quickly. Here\’s where the anxiety goes off the charts and it was a good thing my husband was there to listen to the doctor. All I hear was that dreaded word “cancer”. I was only 42. We immediately called the GI doctor but he was booked 6 weeks out.
Here’s where fate intervened. My husband is a middle school teacher and had taught all the kids of the doctor we wanted to transfer to. He calls his office, they say he’s out but ask what the problem is, he tells them what\’s going on, who he is and gives him his cell number. Not five minutes later at about 4:30 he calls us back personally to ask what’s going on. He can hear my sobbing in the background. He tells my husband that he is on his way in to his office and the hospital and will meet us there. That was a first HUGE relief.
After he examined me he went down to radiology to look at the scan from the other hospital. Again, fate came to the rescue. While he was looking at the image, the GI doctor…whose office is way across town, just happened to walk through the room. These two doctors also happen to be great friends, so our doctor asked him to take a look. He did. He said it needed to come out immediately. We were going on vacation the next week…but he got my in before that…got the mass out and sent it for testing. He said it looked suspicious and was large enough that if I hadn’t gone in when I did, it would have been a much different situation. It was sent to a lab in California and we went on our vacation. I was scheduled for a follow up colonoscopy in October to see if the tumor was continuing to grow. Flash forward to August, the GI doctor calls me personally to tell me the results of my biopsy (which are pre-cancerous) but that the tumor has some abnormalities that concern him. My husband and I meet with him again and this is where I first learn about Lynch syndrome and the possibility of my having a mismatch gene. The fear and anxiety were back with a vengeance.
After my follow up scope in October, which was clean, we drove to Albuquerque for me to get genetic testing. I am the first and only person in my family to have cancer of any type and the geneticist was surprised to hear my history. She did tell me that with this syndrome the likelihood of my getting ovarian and/or uterine cancer was 80% higher than the general population. She suggested a total hysterectomy.
This sounds scary, and it is, but I had had my tubes tied years before, so I was of the mindset “get it all out!” They took my blood, sent it off and away we went. I have what they call a “cryptic” gene, meaning one they haven’t identified yet, but there is a mismatch in the sequence. In November, I underwent a total hysterectomy. It honestly helped to ease some of that anxiety.
I will forever have to get scoped from tip to tail every year and with that will always come the fear of the unknown and what they might find. I’m thankful something made me go get help that day or it’s doubtfully that I’d be writing this story. Thanks for sharing my journey.