Thanks to all of you who did some research after last week’s blog. You guys rock! It wasn’t even an issue I had thought about asking for help with and yet you jumped in anyway.
At the end of last week, I was able to locate the woman I needed to speak with who had approached me at the conference. It was a combined effort with a couple of agencies, but I found her. I went to meet with her this week and came home with that same mixture of intense emotions – excitement and energy, mixed with a sick stomach all at the same time.
Truthfully, it’s a bit overwhelming. I don’t really have a scientific mind so it’s a bit out of my comfort zone just to wade through articles and learn new terms and jargon. And I have my moments where I just plain get angry and say out loud to no one, “I don’t WANT to talk and think about cancer anymore.” At least not when it’s personal like this.
I wasn’t expecting the first big piece of information. It is best to start with testing Tim’s tissues. They recommend a “tumor panel” vs. just looking for one thing or another. Unfortunately, the hospital did not suggest we do a DNA bank when Tim was a patient there. Supposedly, anyone under 50 that is terminally diagnosed is supposed to be flagged for this but we obviously were not. If we had been, Tim’s insurance at the time would have covered the expenses. Now I could be looking at a $4,000 bill. This is a good reason for me to blog because I’m sure most other people aren’t aware. IF YOU ARE UNDER 50 AND HAVE A TERMINAL DIAGNOSIS, REQUEST YOUR DNA BE STORED AND STUDIED. That should be standard procedure, but it is not.
Generally, hospitals and labs keep samples for seven years. It’s hard to believe, but it has been over six years already since Tim’s initial tests were done. That gives me less than a year to track it down, if it is even still available. I am starting that process this week as it is the first step to all of this.
Second step is family history. I will be researching some programs that can be distributed to Tim’s family with the help of his brother. People will be able to add information they have (you never know who has the scoop on how Aunt Gertrude died type of thing) and then the program spits out the results in an organized fashion. Tim’s brother has been very kind and willing to help with this. The results could be very important to his family as well.
After all of that, we start talking about “germline” testing with 1st, 2nd, and 3rd degree relatives. How effective that is will depend on the results of the first two steps. It will most likely be covered by health insurance because being related to Tim meets the criteria. From there, a positive or negative result will have a domino effect on what happens after that.
I’m already exhausted and all I have done is take the information I have and map out a plan of action. Part of me is glad to have my brain stimulated with something new. Part of me is scared to death for my kids. It is bad enough to watch your spouse suffer. The only thing worse than that is to watch your kids suffer.
This totally makes sense to me though. It is very unfortunate there is little emphasis placed on this. I hadn’t even thought about it until now. I just looked at this doctor and said it so makes sense to try to cure cancer. But doesn’t it make even more to prevent it before it even happens? That look passed over her face. The look that said, “Welcome to my world. I think that exactly so why doesn’t the rest of the world? It just makes sense.”
Wish me luck. And energy. I need both 🙂