Forgive me if it is boring.
It all started when… well we actually have no clue. My oncologist said something along the lines of “well if you got in a car accident and got a CT scan a year ago maybe we would have seen it maybe not”. My very first symptoms of note started in February, 2014. I had a cold that just never went away and I assumed turned into a sinus infection. My fiancé, Kyle’s, birthday is March 4th and I remember not being able to taste the amazing truffle risotto and short rib dinner that I slaved over all day because of my “stupid sinus infection.” I tried all the over the counters, saw my regular Dr. and got antibiotics, tried more over the counters and it still lingered. It didn’t affect my day to day life terribly so I kind of brushed it off.
Time went by and I started to realize I was losing my sense of smell. I went to an Ear, Nose and Throat doctor who is an amazing family friend while visiting my parents who put me on 14 days of antibiotics along with steroids and told me if this does not work I need a CT scan. I felt some relief at first but the day the steroids stopped I felt a “whoosh” of symptoms. (Side note: this also happened to be the day after we got engaged and were celebrating with family in PA).
My ears felt full my jaw was hurting and my face started to go numb. Being a nurse, I knew numbness meant nerves and this was something serious. I scheduled an appointment with an ENT in New York who thought it was TMJ (lock jaw) asked if I had seen a dentist then semi- reluctantly said I should get a CT scan. That Monday I got the scan and continued on with my day which consisted of packing and hopping on the bus to go to PA for a week off that I planned to spend lounging at the lake and celebrating two friends’ weddings the following weekend.
And then BAM.
It was 5 PM and I had just placed my bag under the bus and taken my seat against the window. The doors closed and the bus started backing out and my phone rang. It was the ENT. He asked if I “had a minute to talk.” My immediate first thought was BRAIN TUMOR. He said the CT showed that I had a “mass.” I responded calmly and asked if it was possibly a cyst to which he said no, that it looked solid and more imaging would be needed. He explained that he had already scheduled me for an appointment with a head and neck surgeon the next morning. So I began a LOVELY two and a half hour bus ride having just been told I had a mass in my head. I called my people, cried a little, turned down the offer of share a bag of pretzels form the nice old lady in an effort to make me feel better. This is also when the name DAVE came to me.
I don’t know why but I immediately felt the need to give this mass a name, it gave me something to be mad at and also something to lighten the situation a little. When I told my friends, it went something along the lines of “I have a mass in my head apparently and we will refer to it as Dave. Thank you.” I asked my Dad to pick me up in the Poconos to get off the bus. We sat silently for our 30 min ride. I spent that night sleeping sitting up on the couch because my head hurt so badly. This was serious. The week that followed was a blur… MRI, biopsies, passing out, being admitted, ER visits and then finally diagnosis: RHABDOMYOSARCOMA as an adult. The primary tumor, Dave, was growing from my left sinus through my skull base into my brain and causing the left frontal lobe of my brain to swell. Dave is sitting on my nerves that allow me to smell and taste normally, cause facial numbness and the swelling in my brain was causing the nausea and headaches. I was told not to Google the diagnosis but PLEASE, it was obviously the first thing we all did. Turns out there are only a few hundred reported cases in adults. Of course I would go get an extremely rare type, right? I like to be different 🙂
Luckily, I live in New York City, home to some of the most amazing hospitals filled with the top doctors. I met with an wonderful radiation oncologist and pediatric oncologist at NYU both of whom I was very comfortable with and discussed treatment plans. They described how my treatment would be similar to treating children and they used the same protocols as other hospitals. Because I am 29 and engaged, fertility issues were discussed. NYU discussed the option of waiting two weeks to begin treatment so that I could harvest eggs. I agreed immediately agreed and set up calls with a fertility specialist. The issue was my symptoms seemed to be getting worse, I was feeling nauseous and weak and having worsening headaches. I was finally put on steroids to relieve some of the swelling in my brain. I did not know if I could make it the two weeks but I wanted to try if it meant I could have children.
During this week of hell, my brother Jake is a researcher by profession and found out that Memorial Sloan Kettering has treated numbers of the reported adult cases in the world. After finding an amazing connection we were able to get an appointment Friday of that same week. I met with Dr. William Tap whose specializes in Sarcomas. Our meeting was intense and ultimately, is hopefully saving my life. He explained that my diagnosis is life threatening and that I basically needed to started chemo “yesterday.” There was no time to wait. He said that decision was mine to harvest eggs which after discussing with my fiance and family, I decided that there was no point if I was not going to be alive to see these future children. I followed up with my fertility specialist and she said that there was many options these days for having children and that I will be a mother one day. I know this to be true and I cannot wait J. Let me just pulverize Dave first so I can get on with it!
As I sat there looking into the doctors eyes and hearing the words “life- threatening” as he explained the gravity of the situation this feeling came over me. I looked at him right in the eye and said “ok, I know I am going to beat this.” I cannot explain this feeling. I have never felt more strongly about anything in my life. I KNOW, I am going to beat this. I WILL WIN. That is it. That is the only way. That is not to say that I am not scared about what this next year or so holds, I am. But I will not accept ANY other option than DESTROYING every single disgusting cancer cell that Dave has spread through my body.
Dr. Tap wanted to admit me that night to get everything started. He sent me into the waiting room to make some calls to set up some appointments that day with a neurosurgeon and radiation oncologist. I sat there crying with Kyle while my mom gave us a minute. That is when my mantra was born. The second Kyle heard Dr. Taps name he said “Kate that’s like Taffer” aka John Taffer from the popular Spike TV show Bar Rescue. For those who have not had the privilege of viewing this program, Jon Taffer goes into failing bars and shuts them down to redo and renovate them. During the show he often screams things along the lines of “this bar is disgusting, SHUT IT DOWN!” We have watched the show many times and always appreciated Taffer’s love of screaming that phrase. Kyle turned to me, wiped away a tear and said “Kate, don’t worry, Dr. Tap basically just said in medical terms that he was going to shut it down.” I burst out laughing and agreed. And that is what I am doing daily, shutting Dave’s ass down.
I met with the two specialists that day. The radiation oncologist was extremely positive and told me I may even blow the tumor out my nose (which by the way, I have blown a few possible Dave chunks out of my nose). The plan was to be admitted Sunday night and have a PET scan, bone marrow biopsy, and lumbar puncture to determine any metastasis and begin chemo later that week. I also had a mediport placed for chemo, which I have lovingly named Miss Cleo. She is awesome and does not hurt at all! Thankfully, everyone at Sloan is amazing and those procedures were felt minimal and pain free.
Wednesday July 2nd, around 9 AM I got a visit from Dr. Tap. He sat down in front of me while I sat up in my bed and told me he had the results of my tests. That bastard Dave had spread to my every level of my spine, my hips, and a nice little spot on my pancreas. STAGE 4. Dr. Tap explained that though this is not ideal, it does not necessarily change the treatment plan which is chemo for a year plus radiation in the fall. The same feeling as I had the first time I met with him came over me. Doesn’t matter, I am going to BEAT it. I WILL win. He used the analogy that if a bear is going to attack you in the woods you don’t just shoot once and let it try to get up and get you. You continue to shoot it until it is dead which is what we plan to do. Nothing against bears, this is all against Dave.
I started chemo on that night, did a dance with my Mama during and sat in the family room watching the most insane rain storm which I pictured that similar things were happening inside my body as the chemo was going after Dave. I was discharged on the 4th of July and began outpatient treatment that next Monday.
Welp, that’s the short of it. I plan to make the remainder of the blog about the day to day of Shutting Down Dave and all the joys/ scaries/ and funnies of my journey.