A few useful facts -
One day I got a call from my OB/GYN -
"I have found some kind of tumor on your cervix. I have never seen this before. Hopefully, the pathology lab will know."
The pathology lab did not know, and five nationally-renowned pathology labs later, I received seven different diagnosis, all pointing at a different type of soft-tissue sarcoma. And, they could all have been right.
This poses a problem as oncologists rely heavily on pathology reports to make treatment recommendations. After consulting with 17 oncologists in the
They ranged from some that I liked a lot because they would preserve my fertility - well, for a little while longer - to some that frankly sucked because they would render me sterile immediately. No one could quantify their risk given our current understanding of the disease. I had to make important life decisions with little to no data. Since my disease had no name and turned out to be unique, I called it "Alien".
Oncologists were telling me "Don't gamble with your life, this may be your only shot at survival. Relapsed sarcoma has no known cure today." and I opted for the most aggressive treatment, renouncing forever to pregnancy. I went through two IVF cycles in-between surgeries to freeze some embryos and ovarian tissue. My hopes as a mother are now all concentrated in a small tank full of liquid nitrogen.
How did that make me feel? -
The physical aspect of this little battle was the easy part. Yes, I have had more pelvic exams in the past 6 months than in the past 15 years, rectal exams are unpleasant; yes, the successive treatments were painful and made me feel sick and tired and yes, and the hormones from the IVF cycle drove me up the wall. The hardest part of my journey is way beyond that. Our bodies have an amazing ability to re-bounce despite their inherent fragility. What hurts the most is anything that throws your mind in disarray, that confuses you, that blurs the line between good and evil. Anything that sends you running around crying 'why me' - anything that burns the minute you caress the subject with hesitant thoughts. Especially when you lose something you thought would be yours forever, just because you were born with it.
I want to live, I want to get back to sailing and sports, get back to work, get back to Improv and writing. I want to travel, jump, run, feel mad and go fast.
I also feel deeply sad. I may have buried Alien but I will never feel a child growing in my womb. I will most probably not have a biological child with a future husband. I have lost something that meant the world to me. Anything that reminds me of motherhood and babies is excruciatingly painful right now.
My journey will be complete when I have accepted my loss, learned to focus on what I have gained and when I have moved from assisted to giver. An entire community supported me. I need to feel re-instated as an active citizen of this little family.
What's next? -
Alien made sure that I'd always remember. He left me a red-ish irregular scar at the bottom of my abdomen. It runs from side to side and looks like a big smile.
The first time I faced it, I thought I'd be afraid. Instead, I was curious. I followed the contour of the scar with a light finger, wincing when I would put a little too much pressure. I cried over that smile that may never fade - but soon I couldn't resist and my mouth took the shape of this little souvenir.
Slowly, a most unexpected feeling crept up. I felt satisfied. This is me now with a smiley face forever drawn on my skin, reminding the world of how incongruous life can be. I tried to imagine the ugly spiky face of Alien, drooling with acid and getting comfy in my belly. I couldn't grab hold of this idea for very long. It was replaced by this soft and tender smile, looking happily at the existence that lies ahead of me.
My battle with Alien and its cousins is not over. I want to raise a medical army so no one ever has to go through the same ordeal. I am building BeatSarcoma, our battleship.
The idea of a family might come back in other forms. Or maybe, this idea will go away. I don't know yet. After I get healthy again, new options will pop up. I don't get to pick the cards I am dealt with but I can still decide how I want to play that hand. God must have had something in mind that I don't yet comprehend. I trust that I will in due time. At least, I chose to find out.So please, make a donation so that no other patient faces the uncertainties of sarcoma diagnosis, the frustrations of limited treatment options and the high risk of relapse and poor outcome.
Founder of BeatSarcoma