Mike gave the lab three more vials of blood this morning to send to Mayo. The testing done now should confirm if Mike has Lynch Syndrome. So, another 2-4 weeks of waiting and wondering and continuing to live our lives.
On June 25, 2010, at age 37, my husband was diagnosed with colon cancer. Following a right-hemicolectomy, genetic testing determined the cause was due to HNPCC/Lynch Syndrome. On December 9, 2011 he had a subtotal colectomy.
Monday, October 25, 2010
Lynch Syndrome
After hearing about and reading bits and pieces about Lynch Syndrome, Mike found a website that helps to explain it more clearly. While we don't know for a fact this is why Mike got colon cancer, it does look likely based on the previous test results. One interesting fact about Lynch is that an estimated 600,000 people in the US have it, but only 5% know it.
Thursday, October 21, 2010
Apparently it's not a "weird, freak thing"
I'm pissed off. That about sums it up right now. The genetic counselor called and said Mike needs to have more blood drawn. Apparently the results of the genetic testing indicate that the two of the proteins that are made from mismatched repair genes are missing. "If the test indicates that one of these proteins is missing or levels are low, you may have hereditary nonpolyposis colorectal cancer (HNPCC)."
Basically, it means this was not a "weird freak thing". Mike wasn't just one of X out of 100 that get cancer for no apparent reason. That makes me incredibly angry. Of course, I knew this was a possibility, but when the last 8 weeks have felt so "normal", it's a big slap in the face.
So...now we wait again. This time to test for alterations in the most common genes involved in HNPCC. Once the blood is sent to Mayo we're looking at another two weeks minimum at which time we will again meet with Laura, our genetic counselor. Another two weeks of not having a damn clue as to what is going on. I hate that along with the anger, the fear is back too.
I know we've already come through a lot. In many ways stronger than we were. I also know we'll get through whatever comes next, but that doesn't necessarily make the now any easier.
Basically, it means this was not a "weird freak thing". Mike wasn't just one of X out of 100 that get cancer for no apparent reason. That makes me incredibly angry. Of course, I knew this was a possibility, but when the last 8 weeks have felt so "normal", it's a big slap in the face.
So...now we wait again. This time to test for alterations in the most common genes involved in HNPCC. Once the blood is sent to Mayo we're looking at another two weeks minimum at which time we will again meet with Laura, our genetic counselor. Another two weeks of not having a damn clue as to what is going on. I hate that along with the anger, the fear is back too.
I know we've already come through a lot. In many ways stronger than we were. I also know we'll get through whatever comes next, but that doesn't necessarily make the now any easier.
Tuesday, October 5, 2010
Full Circle
I just realized it's been a month since I last posted. Yep, life keeps going.
Mike started back with the Air Force this past weekend - 15 weeks after the Air Force PT test that prompted his initial visit to the doctor. In the last month we found out that one of the two genetic tests came back clear, but we're still waiting on the results for the second one. Mike saw our family doctor last week and the iron levels in his blood are back to normal so he can stop taking the iron supplement. No more prescription meds, now it's just baby aspirin and fish oil.
It's strange how we went through so much and now there are times where it seems as if nothing happened. Cancer is no longer something I think about constantly. It still comes up every day in some form or another, but that's just part of who we are now and it doesn't seem odd anymore.
My way of thinking has changed some. I find that I stop more often and remind myself of what is important. Do I really need to finish sending "one more email" or is playing "restaurant" with my daughter more important. The times when I make the more "convenient" choice rather than the right choice, the voice reminding me to rethink things is louder than it ever was before.
Mike started back with the Air Force this past weekend - 15 weeks after the Air Force PT test that prompted his initial visit to the doctor. In the last month we found out that one of the two genetic tests came back clear, but we're still waiting on the results for the second one. Mike saw our family doctor last week and the iron levels in his blood are back to normal so he can stop taking the iron supplement. No more prescription meds, now it's just baby aspirin and fish oil.
It's strange how we went through so much and now there are times where it seems as if nothing happened. Cancer is no longer something I think about constantly. It still comes up every day in some form or another, but that's just part of who we are now and it doesn't seem odd anymore.
My way of thinking has changed some. I find that I stop more often and remind myself of what is important. Do I really need to finish sending "one more email" or is playing "restaurant" with my daughter more important. The times when I make the more "convenient" choice rather than the right choice, the voice reminding me to rethink things is louder than it ever was before.
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