outside looking in

today i saw the neuro-opthamologist for a follow-up to my visit back in march.  i was referred to her because of where my tumor had been located.  it sat on top of my optic nerve and the left occipital lobe.  the occipital lobe is where our vision is processed.  all our eyes take in, it is sorted out back there.  when the tumor was removed, healthy tissue had to go with it - in order to ensure the "clean margins" everyone wants to hear about.  so, there was some damage done back there.  the end result is i have a small slice of vision in both eyes, at the lower right hand reaches of my eyesight, where i can't see.  it is called a "field cut" and the news i received today was it had gotten only marginally worse over the past three months.  this is actually good news, because it is not uncommon to experience a big difference after radiation and all i've been through.  it will be something we watch, like MRIs and CT scans, but i don't have to go back until october.

while i was with the doctor in her office she looked through some of the notes from my surgeries and radiation and then reviewed some images from an MRI i had in april and a CT scan i had the day of my most recent surgery.  as she scrolled through the slices of each, starting with the MRI, i had the most amazing realization of just how intimate the past five months have been for the doctors taking care of me, their teams, and me.  there, in bold contrasting black and white, was my skull, with a hole in it, and my brain, with a divot taken out, a grey shadow marking the spot where my tumor had once been and the slightest bit of brain matter had been removed.  and there, where the hole had been, was the titanium mesh, which is mesh indeed, protecting the center that allows me to function - to see, to hear, to make memories and save them, to speak, to run, to love - after i spent more than three months walking around with it hidden from the world by only a layer of skin.  skin!

while in the waiting room i met a brain cancer survivor, 15 years on from whole brain radiation.  she came to talk to me because she saw my bald head and incision and took a wild guess.  her situation differs from mine because her primary cancer was a brain cancer, which is very different from having a metastasis of another form of cancer.  she actually got radiation poisoning from her treatments and her hair hasn't grown back, but other than that there was little way to tell she had been through anything like she had.  there was some hearing loss, but other than that i feel fortunate to have met her.  it gave me a chance to commiserate a bit and it also gives me hope - she is 15 years out and not completely crazy.  there are word retrieval problems but i already have them from chemo, and anyone i talk to over the age of 40 claims to have them anyway.  i hope she knows just how much she helped me today.  i know i'm not guaranteed another 15 years, and i know it is different for everyone, but it did wonders for my anxiety.  i hope i was able to help her in some small way, too, even just listening.

now i am just relaxing and when i am finished typing this i'll take a break from screens, listen to some music, and veg out a bit before getting some sleep.  i'm nervous about my scan tomorrow, but i am trying to think how i would feel if the brain tumor never happened; this would be the second checkup of the year and i think i am feeling good outside of the side effects from the surgery and just general fatigue.  i've said it before - i want a break.  but i also know i'm not in control, either, so we'll wait and see.