today was our genetic counseling appointment at Meritcare. Tyler's cancer was so rare that the UK has the most information about it and they have only had 77 cases in the last 20 years out of about 100 million people. Makes you wonder why this would happen to us. of course its hard not to think that everyday and selfishly wish it had been anyone else BUT us. I know that sounds awful... especially since I wouldn't wish this on my worst enemy, but I have always tried to be honest about what I feel and there it is. Why couldn't it have been someone else? I want to be selfish, cruel, un-Christian-like, mean, and nasty. I wish that this had happened to someone else. It would be nice to say that I am such a pillar of faith and kindness that the thought never entered my mind, but it does daily. I wish I was on the outside looking in, reading someone else's blog, thinking that poor family.. I'm so glad it's not me. Ah well...
All in all things have settled down here quite a bit. After we got through Jay and I's birthday, mother's day, graduation, memorial day, the delivery of the headstone, we have had a pretty good week this week. It is hard to say if there is such a thing as feeling better, because I don't really think there is. I think it is a matter of feeling better about not feeling better. We went to Carter's baseball game on Tuesday. I kept looking around at all the familiar faces and thought that I am so glad Tyler had an opportunity to grow up here. You can't buy small town. I am thankful that I am surrounded by people who knew Tyler, will remember Tyler, and Carter and Cassie will grow up with those same people. Tyler is part of here and there isn't that anonymity that you find in bigger cities. I see that Tyler's car is part of the 2010 Turkey Day shirt. We were pleasantly surprised when that came out in the paper today. After living here for over 20 years, I will have to break down and buy my FIRST Turkey Day shirt.
Back to the genetic counseling. This is how she explained Tyler's cancer or how my little brain sort of remembers it. There are spaces in our chromosomes where sometimes chromosomes break apart. in 99% of cases this doesn't matter. In Tyler's case, he had a cell where the X chromosome and 18 chromosome broke but not in the space... they broke in the actual functioning chromosome part. These broken pieces formed to make a super gene which didn't know how to shut off. No one knows why this happens. If we could have caught the tumor immediately, he maybe could have gotten it surgically removed, but who would ever think that a teenager with a little back pain has cancer? goes back to there is no way we would have known to do anything differently. that's why hindsight is always so fantastic. Long story short, no genetic link, but they are going to look at Carter and Cassie's chromosomes just to check them out, but not expecting anything earth shattering to come up. To test or not to test, that was the question of the day. We opted to test, but could have gone the other way just as easily. I can't say knowing something might happen is better than not knowing. We will always at this point feel like something is barking at the backdoor. Cancer has changed how we view life irrevocably.
The garden is done. Please stop by and see it if you are in the neighborhood. I am mighty proud of it and feel like it is pretty special. I'd like to think Tyler would too.
Hi, Daneele! I agree that once your life is touched by cancer it always hangs in the back of your mind. When Ken's returned I can't say we were surprised. The thought is tucked back in the corner of your brain...at some point human nature (God!) says don't dwell on it, do the best you can with what you have right now! When Ken was first diagnosed in 2002, Carcinoid cancer occurred in 1 in 7 million people. He always says "But I can't win the lottery"!LOL Although he has never said "why me", I can sympathize with your thoughts of "why my son"...Keep "hanging on"...still praying for all of you! Love, Kathy
ReplyDeleteYes, "The Test"... been there, done that! We wanted so much to believe that we as our son Scotty's parents, somehow had something to do with him getting his super rare cancer, because then we could blame it on something tangible, but instead of that, one of the best cancer research hospitals in America tells us it has absolutely no idea what the heck his cancer was all about! But hey, "it will be in a medical journal to help future research", they told us, making me feel like my son was some sort of a freak-show. The whole death aspect is one thing, but the mental and emotional trama of having watched him being eaten alive, slowly and painfully by that horrible beast, is completely another. I just can't seem to see any value in why some folks have to experience such bit-by-bit destruction, while others get the speedy version. The death ends both, but the lasting images of him crying out to Jesus to "please don't make me suffer like this", even as the cancer ravaged him further, really have twisted the stake that was driven into my mother's heart. Why did you and I, and other families like ours, get "picked" to experience this nightmare? Would it have ruined some really important cosmic plan for our sons to have lived out Godly Christian lives, and then die painlessly in their sleep at a ripe old age, long after we had left this world before them? I guess so, because God is in charge, and He says "All things working for good" (Romans 8:28) and somehow, someway, it all makes sense to Him (just not any sense at all to me!) I plan on getting out to your part of the world one of these days real soon, and would love to see in person the garden you have made in memory of your precious Tyler. On a totaly unrelated topic: If you happen to get HBO (or know of someone who does) you might want to watch a new documentary movie that I am featured in called "No One Dies In Lily Dale", it shows me going to this strange little town as a part of my grief journey. It was a challenge to my Born-again Evangelical Christian faith to go there, but yet, it was an opportunity to share what my Scotty-boy was all about: "All the glory goes to God, it's all about Jesus". It will be on Monday, July 5th, at 9pm (check your local time listing) and I hope if you do get to see it you will email me at Hinrichsfamily@hotmail.com with your "couch critic review"...and don't worry about hurting my feelings if you don't like the film, I have a "rhino rump" for a personality, so it takes an awful lot to bring me down! After all, after going down the road I have had with my son, everything else seems like a piece of cake! O.K., Tyler's Mommy, this is Scotty's Mommy signing out, saying: "I am now just 1 more day closer to being with my boy once again!" Susan
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