Today we learnt I have cancer, not any time of cancer but Clear Cell Sarcoma. What is that you ask, I have no fucking clue because there are only about 300. I guess I should be thankful that my doctor knew what it was because from my reading most people are misdiagnosed more often then not. The prognosis is shitty, reassurance rates are high, the 5 year survival rate is around 65%, then the 10 year survival rate is around 30% and then 20 year survival rate is 10%. With those shitty odds I truly believe in medicine, and if I can make it to 10 years who knows where research will be if I relapse. Fingers crossed those researchers find hope for the 300 of us.
The plan, this week will be filled with doctor appointments, on Tuesday I have a PET scan to check for metastatic disease followed with an appointment with a surgical oncologist, then on Wednesday I have to go back into the OR to have a sentinel node biopsy done, then on Friday I have an appointment with a radiation oncologist to set up everything to start radiation the following week.
I will be having 30 rounds of radiation over 5-6 weeks and then Dr Parker Gibbs who is incredible with be resected (removing) not only the tumor but also majority of my Achilles' tendon. How do you walk without your Achilles' you ask, well you don't, he will be grafting me a new one from a cadaver.
We are talking about adjuvant (which means along with the primary treatment, as listed above) chemotherapy. Not sure if we will need it, unfortunately this type of cancer does not respond well to chemo.
Honestly, I am heart broken. The stress I am putting on my family is huge (I know they love me regardless) but seeing them so broken tears me up. All I want is to be able to raise my son.
My Dearest Colin,
You are the light of my life, my reason for living. I promise to fight with every fiber of my being to be here to watch you grow up. You are going to do amazing things in your life, I know it.
Please always remember to be kind and compassionate. I believe in my ability to fight, I believe in you, I believe in your Daddy and most importantly I believe in us as a family--we were meant to be together for the long haul.
I love you to the moon and back.