This takes 1:1,000,000 to a whole new level

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.

Mommy

...

As life always is, we've experienced an interesting turn of events.

Just going about our day to day life, enjoying the amazing little boy in my life when bam…things change.

Back up 4-6 months ago I had a little lump pop up in my ankle--honestly, I thought nothing of it. Initially I expected it to go away, but when it didm't I just figured it was a little lipoma. It is about an inch in length, non painful and a little squishy. 

Well 3-4 weeks ago I started working out again, then on Friday night my ankle was killing me! I decided I need to go see an orthopedist to get a MRI and then probably just get it removed, or so I thought.

I went to the doctors last week, he said it feels like nothing, let's get an MRI to be certain. I said to the orthopedist "that sounds good, but you know as an oncology nurse I'm always a little concerned about lumps/bumps." He said "I completely understand….if there is any suspicion I will send you over to see Dr. Gibbs or Scarborough (orthopedic oncologists)." I literally chuckled a little nervous laugh and told him that would not be necessary because I know who they are, they operate on my patients and seeing them would just be silly.

Fast forward to yesterday. I worked all night on Wednesday night, got off work on Thursday and headed to the (very fancy) orthopedic institute. The MRI tech called my name and we walked to the MRI suite. He asked me all the questions, told me it would take about 45 minutes. We would do the first set of images then he would inject the contrast and finish it up. Ok I get it, where do I sign. Signed away and in we went. Before it even started I got nervous, people who have cancer get MRIs…oh such a silly thought, stop worrying, try to take a little nap. Once the MRI was over I asked him what he thought, "sorry because of HIPAA I can't say anything." Whatev.

I sat in a room waiting for the orthopedic doc for 45 minutes. After 30 minutes someone came in and said we haven't forgotten about you just trying to get a final report written. When he said that, my thought was that can't be good. He saw that look on my face and said, it'll take less then 10 minutes, don't worry. Well 10 minutes later the orthopedic MD came in…he said "I'm going to refer you over to Gibbs office, the differential has given us a few different options including a fibromatosis, synovial sarcoma or giant cell. I think it's giant cell which is benign but this is their area of expertise. " F…really? He said "Do you know Brandi (their office RN)?" I told him yes of course, I know Brandi well, the oncology world is a small little world. He said "ok I'll call her and she will help you make an appt, but don't worry." Freaking really? Don't worry. Ok sure whatever.

Brandi came and picked me up and we joked on our way over to their office (across to the other side of the office).  We made some small talk and then talked about some of these patients that we mutually take care of then she lead me into the schedulers office. I expressed my concern about everything with her and she said sit tight, let me talk to the radiologist to get a better idea what they are really talking about. Bless her. She came back and said they are leaning towards a differential of fibromatosis vs synovial…great. She said we really have no idea until we get the biopsy. She texted me last night and said she talked to Dr. Gibbs and he reviewed the MRI and said he is leaning towards a differential of giant cell tumor vs synovial. Yet again, we will have no idea until we get the biopsy results.

Game plan:

Wednesday 8/28: Appt to meet Dr. Gibbs preop and labs

Thursday 8/29: Biopsy

I'll post again later (maybe not until next week).

Day in the life, Son up to Son down! Photo story