For the past 5 years and 9 months, I have put my best foot forward when it comes to my cancer “battle”. I put battle in quotations because in a battle there is a winner, in this “battle”, my “battle” there will be no winner. There is only one way for this “battle” to end. I smile when people ask me how I am feeling and say “ok”. I spare most from the hard details to prevent them worry. I have even convinced myself that maybe it will all be ok. I used to think that I would be the One. The One who lives with this disease for a normal life span. I am realizing more and more that will most likely not be my fate.
These medicines that I am put on all have horrible side effects. Each one worse then the other. A few months ago when I had a terribly painful rash on my body, one where I had to lather myself in prescription cream and then cover my entire mid section in gauze just to move around I thought that it could not get any worse. Then……I lost my vision. Not completely but enough to be terrified that I was going blind. Then…….I developed severe severe neuropathy. My neuropathy causes random cramping in my legs and a constant burning (like walking over hot coals burning) in my feet and my left fingertips are all numb. I have to wrap my feet in ice packs every night and throughout the day just to get through it. All while the normal cancer side effects are all present as well. Can’t wait to see what future side effects I may endure- haha. It’s funny isn’t it how well I am at hiding all of this. When you see me you’d never know.
Since the end of November I have lost three metastatic sisters/friends. Jen I met when we randomly shared a cab to the airport at a breast cancer conference in Philly. We stayed in touch and sometimes would see each other during our treatments. Jen made the admirable decision to stop her treatments as the side effects were too harsh. She managed to live a few really good months where she felt better than she had in years and sadly passed at the end of November. Katie was one of the Dana Girls as she had dubbed a small group of us that all met on the 9th floor at DFCI. Katie was an avid runner who most recently ran 41 miles on her 41st birthday this past May. Katie’s body couldn’t handle anymore treatments and sadly she passed a couple of days before Christmas. Christina I had actually met through a mutual friend years ago and was recently connected with through the Gloria Gemma Foundation when she has a recurrence of her cancer and was now stage four. She had a tough go from the beginning but always stayed positive and always ended every text with “I’m here if you need anything.” That was the kind of person she was- going through hell but offering help to someone else. Sadly she passed away a couple of weeks ago. Often times when someone with MBC passes everyone will say “wow she went so quick” when in reality- for me- I’ve been dying for almost six years. Clinging and fighting for just a little bit more life.
I had scans this past Friday. There is a patient portal that all of our test results come through often times before we have even spoken to our dr. I received one of the results before I had even arrived home from Boston on Friday and the others that night. The results were not good. This “miracle” medicine that has caused me so much grief over the past 12 weeks. The medicine that 5 weeks ago deemed such a good response is no longer working and the tumors in my liver have progressed and grown. This is the rollercoaster of my life. You live treatment to treatment, scan to scan. You take the good news in but you don’t celebrate it because you know that it could be bad news just as easily. I am not sure what the next steps are yet for me and for this cancer but I am sure that they are not going to be easy.
I sat with these scan results for the past few days and decided not to share them even though many people asked. I did this for many reasons. I have not yet spoked to my doctor and wanted to wait. It is exhausting to talk about. I am tired of living this life. I hate that a lot of my conversations with people revolve around this disease. I hate what this has done to my family. I hate that with every medical disappointment I am losing hope and faith. I hate knowing what is to come for me and that this is my life.