My friend sent me this video and this may or may not have triggered the depression phase for me.
The range of emotions that you go through as you are facing a serious life altering diagnosis is absolutely surreal. I am a grief therapist, death is in my face every single day. I try my hardest to live from a place of mindfulness, being in the moment and not wishing for a phase to be over or longing for times gone by. I recently went through a life threatening illness with a close family member, I thought I understood. But it turns out I didn’t.
I went to the appointment on December 24th to review my MRI scans with the neurologist. Suffice it to say, this is not his area of speciality. He explained that I had a tumor in the 4th ventricle of my brain. He could not tell me what kind of tumor it was or how long it had been there or what it would do in the future. He believed it to be cystic and I shouldn’t worry.
When I asked him what I should tell my family he said “tell them you have a lump”. When I told him that it was very scary to get this diagnosis and that I felt he should have called me himself he didn’t even bat an eye, “If I thought it was serious I would have called”, so I reiterated that anyone being told that they have a mass in their brain is going to think it is serious, that maybe he was desensitized to this work and should consider his patients perspective. He did not agree. Dr.A and I said goodbye, forever.
By chance I happened to have needed to take my daughter to the pediatrician that afternoon, he also happens to be our family doctor. While I was checking in at the front he came out and said “Amy, I’m so sorry, I just read your MRI, is it benign? Do you want Xanax”?
I explained that we didn’t know enough about the tumor yet to say for sure and yes I would like an anti anxiety med, I’m not screwing around this time. I know my limits and this has exceeded my ability to remain calm, cool and collected. Off I went with my prescription for Lexapro and promptly popped the first pill the minute I walked into the house.
Lucky for me my husband has an old friend who happens to be a neurologist at New York Presbyterian Hospital. We called her for a second opinion. She does not specialize in brain tumors but knew who to put us into contact with. They reviewed my MRIs and felt that it was in fact not cystic but rather something else and that I should not wait 3 months but 6 weeks for a repeat MRI. Three specialists at New York Presbyterian had 3 different opinions. One felt it was a subependymoma, another thought it was a “weird” subependymoma and the last felt it was a low grade glioma.
I will insert a break so you can Google now 😂
Subependymomas account for 0.2-0.7% of all brain tumors diagnosed and one of these guys believes mine to be a “weird” type. Good grief.
It apparently is weird because they usually grow from the floor of your 4th ventricle and mine is growing from the roof. They also said that the tumor is pushing slightly on my aqueduct but not enough to inhibit cerebral/spinal fluid from being properly circulated.
It appears that at this point the surgery is probably the best option. Want to know what that would look like? Don’t watch if you are squeamish.
I have an appointment on Jan 2, 2020 with a neuro oncologist here in Buffalo and will then be making plans to fly to NYC to go see the doctors at New York Presbyterian and Sloan Kettering. Until then I’ll be scrolling Pinterest for a new haircut.