Lately all I know is that my life has felt like a large puzzle, with pieces everywhere and nothing connecting.  There has been so many questions and so many possibilities.  During the past week, I feel as though the puzzle is coming together.  I heard from insurance that I was approved for Proton radiation, prayers are being answered!  I made the decision to stay home and be treated at Penn.  I was able to get my schedule for treatment, which means I will be starting Radiation and Chemo on May 7, 2019 with my last radiation day being June 21, 2019.  I have figured out a schedule on who will be going with me to treatment and who will be with my kids.  I am so fortunate to have amazing family and friends and I count my blessings everyday because especially during this time, it takes a village! 

I received an unexpected phone call from my radiation oncologist this week to inform me of possible side effects from the radiation.  Although the chances of these side effects are very low since I am getting Proton radiation, there is still a chance so I needed to be warned.  Due to the location of the tumor it is very close to the spinal cord, which if that is hit it could be paralyzing.  The tumor is also located near where a group of nerves come together that control the function and feeling in my right arm and hand.  There is a chance I could lose feeling or function in my right arm/hand.  The radiation could also damage my esophagus causing difficulty swallowing, in which case I could potentially need to have my esophagus stretched one-two times a year or a hole could form in my esophagus, which is life threatening.  I am very well aware of the fact that these side effects have a low possibility of happening, however I can’t help but worry especially considering my chances of this type of cancer, this number of times is practically unheard of.   I truly believe I am going to beat cancer, but right now I am questioning how else my life going to change from all of this?  I still get people asking me why I talk the way I do, or make comments that I don’t sound good.  I have grown to accept those comments because the reality is, most people I know have never encountered a woman my age experience this type of cancer.  The really scary part of all of this is the fact that these radiation side effects won’t show up during treatment, but will show up 2-12+ months after treatment and the doctor can’t tell me when/if I will ever be clear of these potential side effects.  Radiation is just a gift that keeps on giving!   For now, I am not only scared of the chance of losing my hearing from chemo, but now all these radiation side effects!

Currently I am simply trying to take all of this one day at a time.  I am more than ready to get treatment started so this cancer can stop growing in my body! It’s a very strange feeling to know cancer is continuing to grow, yet nothing is being done about it yet…