After being initially elated to have an answer to what is "wrong" with me (Cowden's Disease), I was shocked and then devastated. As I learned more about it, I felt defeated. The average life span of people with Cowden's is 47. Only 5 years older than I am now. I know how averages work, thank goodness, so that means that there are probably people that lived until 90! But, I'm feeling like my odds of a long life are not good.
I don't want to leave my children. I don't want to leave my husband and I don't want to leave my life. I know a lot of people come to terms with death when they might be facing it - they say, "I'm not afraid to die...." Well, I AM afraid to die and I don't want to die. I love life and I love my life. I want more, more, MORE of it!
I'm lucky to have made it as far as I did healthy. 40% of those with Cowden's have at least one cancer before they turn 40. I made it to 41 before being hit with a double whammy. I'm pretty lucky. I saw a woman on YouTube that had Ovarian Cancer at 8 years old and a double mastectomy at 19.
I don't feel lucky right now, of course. I'm too worried about my future and about the future of those I would leave behind. I want to live a long healthy life but I feel as though cancer will always be lurking around the corner now and I'll just be waiting for it to reappear. I'll be monitored, sure. There will be lots of tests every few months to monitor things to see if there is cancer anywhere. I'll be holding my breath each time waiting for results. Because it seems like it'll be a matter of "when" not "if" I'll get cancer again.
I'll likely be looking at having a hysterectomy since uterine cancer is also a big risk for me. Uterine and Ovarian cancer are hard to detect so it's probably best to just get rid of any extra body parts that I don't need at this point. In light of this, I have thought of other parts I don't really need like the gallbladder and spleen. I mean, they aren't really doing much for me. Just hanging around - unneeded. Same thing for the uterus and ovaries. I'm pretty sure I could come up with some other parts that I don't really need.
I realized when I woke up from my bad dream that I need to stop worrying about what could happen and start living for today. Stop living in the future and start living in today.
I'm not there yet, but I'm trying.