Today is the day I have been waiting for. My husband and I woke up at 3 am to catch the first flight out of Buffalo into New York City. I was equal parts nervous and excited. I can’t explain why but I was putting extra weight on what the doctors at NYC had to say over Roswell and Cleveland. Maybe it’s because it’s the 4th ranked hospital in the country for neurology, maybe it’s because we had a connection to the doctors through a friend, I can’t exactly put my finger on it but I was anxious to hear their opinions. My stomach was in knots, we went to an amazing bagel shop (of course it was amazing, its NYC) and I couldn’t finish what I bought. I couldn’t finish my coffee even though I was exhausted. I just wanted to get through these consults.
When we arrived at the hospital it was a bit comical for me. They had just implemented a new electronic medical record system (Epic, get ready work friends!) and everyone was very stressed about it. Working in healthcare has taught me to be extra patient in these situations.
The first doctor we met with was the neurosurgeon, he had a VERY fancy office which radiated “Im hot shit and you should value my opinion”, and we did!
Dr. B was very tall and kind. He showed us my most recent MRI and explained why he thought it was the type of tumor that they believe it to be. At this point the consensus is that this is a subependymoma.
That my friends is the best possible option of all the tumors that it could be. They are ridiculously rare, benign and the slowest growing. This is great news but I will take a moment to explain that just because a brain tumor is benign doesn’t mean that it doesn’t cause problems for people. I have learned a lot over the last 2 months, for example most brain tumors are benign, only around 30% are malignant and they are the ones that everyone fears getting (most notably glioblastoma). Benign brain can reek all kinds of havoc on people’s lives. The list includes epilepsy, stroke like symptoms, blacking out, double vision, issues walking, lactating, migraines, constant nausea, the list could go on and on.
Anyway I bring this up because prior to being in this situation I did not realize any of this and frankly probably didn’t have empathy like I do now. Like many things in life until we gain first hand experience we just don’t understand what others are going through. For me this is more verification to stop being judgmental because there are a lot of paths I have no clue about.
Ok so to get back to the appointment. Dr. B felt that since I am not showing any signs of hydrocephalus (accumulation of fluid in the brain) that we should not do surgery right now. He explained that we should continue to monitor me closely and if there is any growth if the tumor then we should do surgery then. He had a lot more confidence about removing the tumor then Cleveland did, and his rate of postoperative neurological complications was much less than what I had read in the litterature. Phew!
Time for the neuro oncologist. My heart stopped for a second we we got off the elevator and a huge sign stated that we were at the “Glioblastoma Center”. I looked at my husband and said “I don’t want to be here, I don’t want to be at the brain cancer center. This is literally the place that no one ever wants to come to.” Down the hall we went, and met our first doctor, a wonderfully sweet fellow named Peter Pann.
Dr. Pann was lovely and had an amazing bedside manner and spent a good long time with us while Dr. I was looking at my MRI. Then they sat us down and reassured us that my tumor does not appear to be aggressive in any way. They believe it is stemming from my fourth ventricle and not brain tissue (that is great news) And it is possible that it might have stopped growing years ago and I may never have a problem with it. They agreed that I should be followed closely having another MRI in 3 months and then every 6 months for 3 years. If there is no change after 3 years we can assume that it has stopped growing.
There was talk of putting me in a study about subependymomas which I am completely open to. I am an information girl and always go to the research when I want to understand something . I would happy to be part of helping others in future to better understand their situation. Hopefully they call me and I can participate.
Dr. I did have some concerns about my memory loss and suggested that I go to cognitive therapy, I will tackle that after my vacation (if I remember)!
All of this news called for a celebration drink! So off we went to Chelsea Market.
When we arrived home there was a book waiting in the mailbox for me. I had started to read it online and decided it was worth putting in my library. Until further notice this is my new story, I am living low grade. Hopefully for a really long time.
I have one more appointment, Friday I am heading to Johns Hopkins. I realize this might seem like overkill to some but it’s my brain, not a toe! Until then…