I used to live my life focusing on the number on the scale, but since my diagnosis I live my life perseverating on another number, the CA-125.
In my last post I mentioned I was apprehensive about attending this conference. While I have learned a lot this weekend and met so many "teal sisters," I feel emotionally drained. I started this post at 3am because I cannot sleep. Even with a xanax.
I learned that there are many long term survivors. I have met women who were 10, 15, even 20 plus year survivors. That gives me a lot of hope. I have also met many women who have had a much harder road than I. One who particularly stands out is the young woman with 2 small children who fought her way to diagnosis over 2 years. Her cancer has caused many other medical issues. She has had 29 different surgeries, and was headed back home to go back to the hospital after the conference.
I learned that I need to ask to have my tumor tested, because even though my own genetics came back BRCA negative, it is possible that my tumor is. That will make a difference in how I should be treated in the event of a recurrence.
I learned that 42% of IP patients cannot complete treatment because of the toxicity. Many of the women I met this weekend started IP but were not able to complete the entire course of treatment.
I learned that there are fewer clinical trials for ovarian cancer than in years past, but that there have been many new treatments on the horizon. This is partially due to a reduction in government funding. I have decided I would like to get involved with the advocacy arm of the OCFRA. This will involve speaking with representatives of various government agencies and elected officials. I already have had some practice, given that I participated in a press conference with Senator Dick Durbin. I also learned more about how clinical trials work, so in the event of a recurrence I know what questions to ask.
There were so many useful and informative presentations. Here is the link to the presentations https://conference.ocrfa.org/presentations/
Next year's conference is in Washington DC. I already have it on my calendar.
I had good news at my checkup. My CA-125 is still at 8, unchanged from the last blood work. I scheduled my next checkup for 3 months, which is sometime in February. I left my appointment with the drumbeat finally silenced for a while. I had a celebratory breakfast with the dear friend who went to the oncologist with me, and then went into work.
I have mentioned in previous blog posts that I have been involved in 2 different running communities. I figured I would use today's blog post to tell you a little about one of them and how it has helped me!
My Cancer to 5K group met twice a week for 12 weeks. The group is part of the Ulman Cancer Group for Young Adults. At the beginning of the season, each survivor participant was provided with 3 potential training plans: novice, intermediate and advanced. The novice was similar to the Couch to 5K training plan I was working with after I was cleared by my physical therapist to begin running again. I really looked forward to my Wednesday afternoon and Saturday morning runs with the group! Each survivor had a sherpa during each of the group runs, and each group had several different coaches. Included in my participation was registration in the Hot Chocolate 5K in Chicago and new pair of professionally fitted running shoes from Fleet Feet!
The day of the race, which was October 30th, I was interviewed as one of two survivors on the Jumbotron at the beginning of the race. It was pretty exciting, lots of people I know say they were at the race and saw me on the screen. I even have a couple of pictures of myself on the screen. Not only did the Cancer to 5K group get me back to running on a regular basis, but I truly treasure the friendships I made with the people in the group. I know we won't have another formal running season all winter, but I hope I will be able to get together with them for some informal runs, and maybe some pizza and beer!
Tomorrow I will write about my participation in a heart rate training plan put together by the Train Like a Mother Club.
Even though I was determined to use this blog as a means of increasing the awareness of Ovarian Cancer symptoms and providing support for other cancer survivors who were returning to running after completing their treatment, I haven't been that consistent about blogging since I completed my own treatment.