Unlike cancer patients who feel sick, find out they have cancer and quickly roll into a whirlwind of treatments, genetic testing is a whole other world. For us, coming to this decision was a multiple year process. There was one cancelled genetic counseling consult 4 years ago. There had been many nights googling CDH1 and linitisplastica. So my blog is a bit backwards, but here’s the road we took to genetic testing, a positive result & a prophylactic (fancy medical term for preventive) total gastrectomy (fancy medical term for cut out entire stomach).
At 16, I lost my dad to stomach cancer after a 3 year brave battle against it (He was 53). When he was diagnosed (after symptoms of being tired all the time and finding out he had low iron counts), he came back stage 4. He was given a year to live. He beat his numbers and lived 3 years. He passed away about a year after his cousin had passed away of the same thing. His mom, my grandmother, died of the same thing when I was 3 (she was 69). And then in 2009, my aunt died of complications related to the same stomach cancer (She was about 55).
My aunt is the one who told us about the gene, gave me the referral and had written us a note about specifically which nucleotide to test for our mutation. I was still in my 20s and had only had our first baby. Add here the cancelled genetic counseling appointment. Add another several years of on and off discussions about the gene. Since my family history didn’t seem to have a stage 4 onset until 50s, it’s a gamble that I’d be ok. But my aunt would always point out we had a great aunt who died of stomach cancer at 31. She was the wildcard. Plus, I’m healthy and in good shape from marathon running. You think it should count for something (apparently not much).
I just finally decided I was ready in November of 2012. We had our second kiddo, and I just wanted to get this over with. My overly rational husband’s comment, “If I were you, I’d do the testing. If it came back positive, I’d take care of it and be done with this whole thing.” (You can tell, we’ve talked about this a lot over the years.) I was told as a female, the stats are 79% chance of cancer with average onset from 31-38. Ok, let’s do this. So after New Years (even though I was hopeful I wouldn’t have it), my results were positive. Well, &$;!,@.
So for 6 years previous and 5 marathons, I’d always had a goal time of 3:30. Never did it for 4 marathons…..my times were 3:32, 3:36, 3:34 & 3:34. Cruel, I know. Maybe I’ve become an experienced runner, maybe it’s because I ran with a buddy the first half, maybe it was the cold weather or maybe it was that I knew it might be my last shot to PR. Whatever it was, in Jan 2013, I ran the Houston marathon in the cold rain with all negative splits (read…every 5k split was even to or faster then the previous one) and absolutely crushed my goal time. I finished in 3:21. I had no clue how I was doing because my phone malfunctioned at the start & I was afraid like so many other marathons when you feel like you’re really keeping pace, you’re actually slowing down. I will never forget being 3 miles from the finish and seeing the clock and realizing I was actually going to do it! So if my marathon speed slows down post gastrectomy, at least I know I crushed my goal time once and for all. 🙂
After that, it was time to schedule surgery. It started out in April. Squeeze in work stuff; squeeze in a vacation and eat. It got delayed because the surgeon had a conflict. Now it was set for May. Delay was hard, but it actually gave me time to do all the things I wanted to do beforehand. Then the week of the surgery (and more of an emotional mess everyday), boom….sinus infection. Surgery delayed another 2 weeks. And that’ll where my blog had started. I was a little stress ball.
So, that’s how I got here. I’m not as sick as we had prepared for. Calories are definitely going to be my issue because I don’t have the weight to lose. Today was a good day. Tired with a long nap, but generally felt good. Hope tomorrow goes well also.
