It’s About Time

I just want to start by saying that all you CDH1/HDGC warriors are phenomenal.  The work that is being done by the foundations, medical professionals, and all of the families and supportive care givers that are going through this difficult process are such a strong group it truly is an amazing thing to see.

There recently was a thesis written by Marcie Casey posted here: about genetic councilors being able provide families with genetic mutations with sufficient information that is pertinent to our situation. I feel that the information in this article hits the nail on the head with things that could be done to improve the process.  The feed back that this group gives is so beneficial to the next generations of family members that have this mutation.

After watching my Mom go through 3 different surgeries and the different stages of recovery of each was difficult and the strength she has shown was remarkable.  My Aunt has recently had surgery for her TG, and her surgery was slightly different from Mom’s and her recovery has had it’s own challenges.  My Aunt and my Moms pathology came back negative for any signs of cancer. I am so happy that this result was found, but it really makes me second guess my decision to go through with the surgery next year.  I don’t know if I have the time to wait or if I shouldn’t take any chances and just get it done. I rack my brain thinking about what I should do.  It’s truly a very difficult decision to make.

We’ve taken a wonderful vacation to Southern California, went to Disneyland for the first time, which was AMAZING!! I felt like such a kid again and forgot nearly all of what was going on. I had the time of my life and so did Chloe as well. She had a make over at the Bibbity Bobbity Boutique and got to jump in line at the Royal Hall to meet Aurora, Snow White and Ariel; we had breakfast with the Princesses at Ariel’s Grotto with Mulan, Rapunzel, Belle, and Cinderella on her 6th Birthday. The weather was amazing, and the beach in San Diego was beautiful.

The last few months I have had a lot of time to reflect on what I am going to do about when the surgery is going to happen. I have tried to make a plan for the best time to not disrupt things with Chloe, to ensure that I can be outside walking as the weather is rather unpredictable here (4 seasons in one day is not uncommon in the spring/fall in Calgary) and as everyone keeps saying that walking is the best way to get the digestion moving.

I have had some tummy troubles and things not moving well or too quickly (sorry TMI) and just getting pains in that region kind of freaks me out. I don’t know if it’s due to stress and having to make the hard choice if I want to do the surgery in April and because I have to call 6 months before hand and stress about it for the next while. The last month especially I have thought about this maybe a little too much. Some advice about how to not think about this for the next 6 months would be appreciated.

There are some times where I feel like I’ve got a board pressed into my stomach and amid all the information I just can’t ignore the facts that have been given to me. I am REALLY nervous and scared but this is something I need to do! I feel that I can’t wait any longer, I just can’t risk it.

A lot of you have found out your genetic position and gone straight through with the surgery and never second guessed the time frame. Every day since July 2012 I have been indecisive about when I am going to do this. A lot of you have gone through the screening a couple times and they found something.  But Monday November 3 I made the call – albeit I missed office hours by 2 minutes (hehe) but got a call back this morning.  The date for the meeting isn’t until January – a really long time to wait (and very near to my next endoscopy) so I can fill out paperwork again and just for formalities sake. But she put me on the cancellation list for the paperwork meeting, though I have to call back at the end of November to see if they have their OR schedule yet to get penciled in.

So stomach there you have it, we will enjoy the next 6-ish months together and then be parted forever. I guess I will have to get my spicy food fix in so I don’t have terrible cravings after and do terrible things to my guts and as Steve Dang suggested, get fit as it helps with recovery.

Any other pieces of advice about this stage of the process would be appreciated.

Thank you for letting me share this journey with you!

Best wishes