Well a few days ago I got an email from my genetic counselor telling me that the results were to be coming in and she wanted to contact me. I had this really happy feeling and kept thinking, well if she wants to tell me over the phone then it must have come back that I don't carry the TP53 gene mutation. That was not the case for me. I got a call the next morning and she told me that the test came back and confirmed the same results from the first test.
It utterly sucks. My family and I were really banking on that there was something wrong with the initial test, and that I did not have the TP53 mutation. I held it together while I was on the phone with her, and she told me that she was going to be sending over a bunch of information regarding different base line tests, scans and doctors that I should get in contact with. I lost it when I got off the phone. I held out every little hope that it wasn't true, that the facility was wrong and I could go on with my life in a more "normal" fashion.
My husband has a way of explaining things to me when I'm upset that really helps calm me down. He told me that this type of testing is SO new to the market and insurance companies are just starting to cover it, that there are more people walking around with this mutation and do not even know. I do not want this to come off in a bad way, but for some reason that comforted me. There is not a lot of knowledge or information collected regarding Li Fraumeni and the TP53 gene mutation. Apparently there are only a few hundred people who have been diagnosed, but I think there are thousands upon thousands of people who have it and just do not know or do not want to know.
While I am scared for my future and a recurrence, but I am working on having an amazing team of doctors to keep an eye on me, I just wish there was a way to fix all the fears I have in my mind.
On a lighter note, I'm healing every day. I have soreness and twinging pains where the muscle was reattached from my initial surgery and on the side from where I had the second surgery done, but it is tolerable. Just recently I formed a beautiful abscess on one of my surgery scars which is causing a radiating pain through my armpit and upper arm area. Normally I wouldn't have been concerned, but this is the side that I had 20-some lymph nodes removed so I was most definitely worried about infection. I met with my doctor and she prescribed me some antibiotics which will hopefully help. Only time will tell!
Now I have to come up with a plan for getting the embryo's tested. Maybe robbing a bank to come up with the money? Or maybe an easier and safer thing I can do to start out is just look for a foundation that might offer assistance. If anyone knows of one, please contact me.