Rachel's Story

Rachel's Story

As I approach the one year anniversary of my diagnosis, I am looking back to see how far I have come. I have told my story many times to many people. I share it with you and the community hoping that maybe it may help even one person. You see, although everyone has a different story, and often times they can't tell you why or how this happens, it is a very different feeling when even the medical community finds you "interesting". 

I can't say exactly when my story started, so I will start with my diagnosis. On June 21, 2014, I was at work. My job is very physical, in a member based wholesale club. I was assisting a co-worker in lifting a rather heavy item, when the rather unusual headache I had been experiencing started again. For a few days prior to that I had experienced this really strange pain, almost like a brain freeze or the feeling if you eat something super spicy, when it hurts in the top of your head. It would pulse 3 or 4 times and then be gone. This would happen every time I did anything that caused any pressure; standing up, sitting down, bending over, even using the bathroom. While assisting my co-worker, the pain was so intense it almost knocked me over. I informed my supervisor I needed to leave. I left work, called my boyfriend, and he took me to the Urgent Care facility here in London.
During my triage I told them about the headache that wasn't really a headache, and about my experience earlier at work that day, and I also told them about my family history. I had lost my Grandfather to a brain tumour when I was very young (too young to remember), when I was 15 my Mother was diagnosed with a brain tumour, and in 2004 my Uncle (her brother) was also diagnosed with a brain tumour. The nurse noted all of this and asked me to have a seat. So my boyfriend and I waited, they told me that it may be a little longer as there were limited beds. My boyfriend who was scheduled to work, debated whether to go or call work. I insisted he go, and that I would call if I needed him or take a taxi home.
I met the doctor a couple hours later. He asked me, "on a scale of 1-10 what is your pain"? I promptly told him that it didn't hurt. He looked confused, so I explained again about the 2 days prior to this and about my experience at work. He then asked "when it did hurt, what was the pain level on a scale of 1-10"? I said 9. He asked why I had said 9, to which I responded, "Well, people pass out from pain and I have never passed out". "Fair enough" he said. After doing what I have come to know is a fairly standard neurological assessment he started to leave the room, and I said "they did tell you about my family history, right"? Almost as if in slow motion he turned around and said to me, "what about your family history?" So after sharing that he left, telling me he would be back shortly.
When he returned, he informed me that he had been consulting with the Neuro people at University Hospital and that my case did warrant an MRI that he would set up for the following week. He also told me that brain tumours are not known to run in families. He was very nice, I think this was supposed to put me at ease. He left to make the appointment and quickly returned, telling me they didn't have time next week but they had time right now. So off I went to my first MRI.  
Once back in my room he came in to give me the results. I won't forget the look on his face, the look of I am so sorry. He told me that they had found a "rather substantial mass"; I cried. My first response was "I am not done being a Mom yet." He was very sympathetic and told me that they were sending me to University Hospital, that the Neuro people needed to see me right away and they would be expecting me. I quickly made arrangements for my son, who at the time was 11 years old, and called my boyfriend, who left work immediately to be by my side.
At University Hospital I was examined by the Neuro Resident on call who did a more detailed exam, and who asked many more questions about my symptoms. She showed me my MRI and my heart sank. Although at the time I had no idea exactly what I was looking at, I knew that something in my brain of that size was bad news, and there really isn't a lot of extra room in there. She then told me the Neurosurgeon on call was in surgery and that she didn't feel I was in imminent danger, that this had probably had been there for sometime, and appeared to be slow growing. She also took my mother's name and her Oncologist's name and told me she would be trying to get in touch with him. She told me that she needed to find the right person for my specific tumour, that in her opinion I was safe to go home for the night, that I would be contacted in the near future by their department, and to return to hospital immediately if anything changed.
I don't remember much of the two weeks after that. I told my family and friends. The worst was telling my 11 year old. I went for test after test; x-rays, CT scan, blood work and more blood work. I met my surgeon, had a pre-op exam, picked my sister up at the airport. I went through those 2 weeks like a zombie, not knowing what to do or how to act. One of my very distinct memories was in my pre-op when I asked what I could do prior to surgery to prepare for coming home... they said let's just wait and see, they will let you know before you leave the hospital. I realized they actually didn't know what to say, after all it is brain surgery. My surgeon was very reassuring and told me that he would do everything he could to make sure I could still be a mom even after surgery. He also explained that my 'lesion', as they called it at that time, was sizable, and in layman's terms had pushed my cerebellum so far that the cerebellar tonsil was resting on my brain stem, which was probably the reason I was showing symptoms. So not only did I need brain surgery, but also what is called a decompression (which removes the base of the skull to make a pocket). My surgery date was July 4, 2014. 
The worst day of my life was not the day I was diagnosed. It was July 3, 2014 about 10:30 pm when I sent my son to his father. He hugged me, crying, and I told him not to worry, I would be fine, we are a team and I am not going anywhere. I lied to him that day, I had no idea what was going to happen, I only knew i was going to do everything I could to make good on that promise. 
I arrived at the hospital and prepared for surgery. My surgery was scheduled for 8:00 am and by 7:50 am they had me ready to go. I was terrified and wondered why they kept asking me if I was ready. Of course I wasn't. There isn't any patient who is ready for this, it's you guys that need to be ready. The doctor told my boyfriend not to worry, we would be fine in the operating room, but it was going to be a very long day for everyone in the waiting room, and he would see them following my surgery. He was right, I suppose. 11.5 hours later I woke up and asked my boyfriend for a little kiss. I did it! I officially made it through brain surgery. 
My care in hospital over the following week was outstanding! I couldn't have asked for a better group of people, I saw many residents and doctors, including my mother's oncologist, who is now my oncologist. I found out a couple days after surgery that they also had to remove my top vertebrae as the tumour had damaged it so badly. 
I learned from the pathology report that my tumour had been classified as a Liponeurocytoma, the same as my Uncle. Since then they have re-examined my mother's and determined hers to be a Liponeurocytoma as well. Although 20+ years ago they determined hers to be a Medulloblastoma, which was treated aggressively with radiation. In 2004 when my Uncle was diagnosed, they started looking at the potential for a family link, the study to my best knowledge is headed by Dr Taylor out of Sick Kids in Toronto.
In the last year I have had the opportunity to recover at home. Coming home, there was very little I was able to do for myself and I had many people to help me. My family, my boyfriend and his family, who stayed with me and took care of everything. I also had many well wishes and prayers from co-workers and friends. My son returned home after 2 weeks. I have put myself in touch with the local brain tumour support group and attend regularly. I do not require any further treatment yet, however, they are monitoring me very closely. I do still have 3 small pieces that could not be removed, and so far it's a wait and see.
Progress after surgery is slow, and I really had no idea how far I have come until I looked back at where I was. It can't be measured daily, and there is no time frame. Do your best, wait and see. I hear that a lot.  
I am proud to say that I am a third generation brain tumour Survivor. This is not something I would have ever chosen for me or my family. Sometimes you have to play the hand you're dealt, though I hope we will never have a story about the fourth generation, and I pray that there will one day be an answer as to why this is happening at the alarming rate of 50% over 3 generations. In the medical community that makes me/us interesting, this doesn't happen. Dr Taylor's team has been in contact with me and I have consented for them to include my case in their quest to try and find what makes our family so special. My Grandfather was diagnosed in the 70s and things have moved forward since then. My Mom is a 20+ years Survivor, my Uncle 10+ years, and I am counting the days until I can say "1 year down, many more to go".
I don't know what my future holds, but I know I have one!
Thank you Rachel, for sharing your story and for your participation in Spring Sprint (now Brain Tumour Walk(where the photo was taken). 
The movement to end brain tumours is stronger thanks to you!


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