Tomorrow is another day

A few days home and things are fully back to normal. Thankfully Madison’s stomach is one of those things! The scheduling of yet another pelvic ultrasound is another. I still question whether it would be better to know for sure if I was BRCA positive. I am not sure if it really matters at this point I guess.

After realizing that there was a history of prostate cancer in men on my father’s side, added to the breast cancer issues on my mothers, I reached out to the genetic counselor to see if it made a difference in the insurances companies payment position. I have heard back from the genetic counselor and it does not. She sent me the full bullet pointed criteria laid out by the insurance company.

I can not worry about things I can not control. This puts and end to the thoughts of testing for me. I have already had a prophylactic mastectomy and the fact that I have scheduled my third pelvic ultrasound in roughly 5 months shows a close eye is being kept on me. Pending the results of this round I will need to make some decisions. Until then, well tomorrow is another day!

A visit with Merida (from Brave)

So as we sat in the hotel one night we had turned the television on but had never changed the channel. After a few minutes we realized we were watching the “things to do at Disney” channel. That is when we saw it, one of the newest character visits at the park was Merida from Brave. She has become important to my family. When I was in the hospital, Frank and the girls went to the movies and saw it together. It was one of the first nights while I was still in the ICU after the prophylactic mastectomy. The girls got a bit emotional as they drew connections between struggles with Merida’s mother and their own.

According to the television, Merida was in Epcot. We had already been to Epcot and did not see her. We tried to look it up on the internet but found a wide array of stories. Seems she is so new that as they tested the character and first put her out with crowds she moved around a bit. We were able to find some cast members who told us exactly where to find her, in Magic Kingdom.

Thursday morning we had plans for breakfast at Cinderella’s castle. Merida was right down the path from there so right from breakfast we went. It was 25 minutes before she was even due to start her day the line was forming. We took our place and patiently waited. AT 9:15 the door opened and in the line moved. They have set her up in an area that was being used for Rapunzel the last time we were at the park. From what we are told during the initial roll out kids were allowed to shoot an arrow with her but it seems that has stopped. I can only assume that it took too long. For those wondering what happened to Rapunzel, it seems that she will join the new Princess Fairytale Hall currently under construction.

The visit was excellent! She chats with the kids and is very playful. She stole the hat of one of the cast members at one point hiding it behind her back. They all play along looking around for it as she places it on a father in line. She then is the one to “find it” announcing that “he took it!”. With others she takes children and hides with them or tells silly stories. It makes for a much longer line, but a much more fun and interactive visit.

When it was time for Meg and Madi to visit, Merida came over to the line to meet them. She immediately took their books and signed talking the entire time. The girls walked with her over to the picture spot. They posed and then both gave her a hug. Frank and I were starting to move along when we noticed Merida and Madi sneaking off to the side of the stage. They hide and snuck around for a few seconds until “found” by other cast members. She then gave Madison a hug and we were on our way.

I know this sounds ridiculous but it brought a small tear to my eye. It made Madison’s day! Well worth the wait!

Genetic testing

So to this day I have never been tested for the BRCA gene. My decision to have the bilateral prophylactic mastectomy was based solely on my own history. A mother who died of breast cancer and my own irregular pathology which put me at a 50-50 risk which was good enough for me.

The findings of lobular carcinoma in situ validated my decision to act quickly and aggressively. Once I was finished I did not put too much thought into BRCA genes. I was doing the follow ups needed and figured we would get the girls tested as they got older.

I have now come to realize that along with the facts that I knew, men in my family also have prostate cancer which is also associated with the BRCA mutations. So, does it matter at this point? For me personally probably not. I have already sprinted out ahead of breast cancer and will have yet another pelvic ultrasound in a few months to once again check my ovaries.

It does matter greatly for my beautiful girls. For me to be able to protect my girls, to be as proactive as possible with their health I need to have as much information as possible! I reached out to the genetic counselor I met with almost two years ago. Thankfully she replied pretty quickly to my e-mail and is pulling my file to check on the insurance. That was always the sticking point for the testing. This blood work cost well over $3,000 dollars which is just not in the budget. I will not rant too much about the insurance company since they were fantastic as the surgery bills came in. My out-of-pocket was minimal! It is the entire system that is broken. priorities are out of whack.

I will receive word probably in a few days and like everything else will go from there. Until I do hear back, all focus stays on the something really important…10 days until Disney!