[agness]

--- part 13 ---

(you have probably been waiting for me to continue, well here goes )

I had symptoms of occipital and trigeminal neuralgia from my original cerebellar tumor that were misdiagnosed. I joined boards for patients who had neck and facial pain and you should know that they are out there and their condition is referred to as "the suicide disease" and they should have your utmost sympathy as well. It turns out that these conditions are a subset of symptoms of a cerebellar metastasis -- but docs are told to look for symptoms of brain involvement that look like stroke, they totally don't get the back of the brain at all. Welcome to the world of the undiagnosed, misdiagnosed breast cancer patients.

After my crainiotomy at the end of July, where I almost died before they figured out I had this huge tumor in my head, I rebounded really well. While the cerebellum is responsible for movement coordination and synchronization, if you grew up doing movement studies at all then your brain distributed the functions around your brain and the cerebellum is important but not as critical. My starting to study dance at age 5 was suddenly a huge gift. I used ballet barre and qigong all the way through to help recover from initial treatment and to deal with having had my head cracked open.

In October I saw the neuro-onc, symptoms of trigeminal neuralgia were there again and increasing. "No, that isn't what we are looking for" she told me. I went home with stabbing pains in my right face and numbness in my cheek and still it was getting a bit worse. "Who am I supposed to see about this if not you?", I asked her and she agreed that it was her area and she would keep tabs on it. I keep hearing that in my head now, "that isn't what we are looking for" and it is so wrong.

Just after Thanksgiving I had my follow up brain MRI and low and behold, what they had been unwilling to see and diagnose me with in the months before was suddenly clear - I had leptomeningeal spread of my brain tumor. Great. So now we go from a diagnosis presumption of "atypical inflammation" to an absolute worst case scenario. Not only that but a few weeks before my medical oncologist told me I was getting too involved in my care. If I waited for her I would be dead.

I couple days went by, a lot of tears on my part and I didn't have the heart to tell my kids. I didn't know what to tell them. But still no plan for addressing the LM. Hello? On the fourth day my body had enough and I had swelling on the right side of my brain (yes I'm quite good at knowing when I have cerebral edema now), a stiff neck and my right eye felt puffy and had pressure. I said I don't know what the bad thing is that you are waiting for but my body has had enough. I called early in the morning and told them before office hours in a voice message that I was going to the ER and they called back once they were in the office and agreed. They said they let the ER know I was coming. I dropped my son at kindergarten and had a friend drive me to the hospital where I spent the next three days.

Do you know that I passed every single neurological assessment at the hospital. I was checked up and down, this way and that, in every department there was a check -- I passed them all with flying colors. This time I was onto them and I told them, I've always been atypical and I will pass all of your tests but I have cancer in my head, it is very clear that there is cancer in my head and I want IT Herceptin.