[agness]

--- part 10 ---

In April 2015, 8 months after finishing neoadjuvant TCHP, about three months after finishing systemic adjuvant Herceptin treatment, I stood up which gardening and felt dizzy. I spoke to my mother on the phone who told me that was just part of getting old. "But I haven't been dizzy before, why am I dizzy now?"

A couple weeks went by and the systems didn't abate so I saw my GP. Chemo might have caused blood pressure issues, perhaps that was it. He diagnosed an issue with my middle ear, which was correct in a way, but it wasn't all of it. I also never had middle ear issues before.

I saw all of my complementary care providers over the coming weeks and I continued my decline, but it was a slow decline and it made it difficult to appreciate what was happening. I should add that I didn't expect my complementary providers to diagnose a brain tumor, or even cancer, they were just there to help keep me from falling apart.

The challenging things were that I had whiplash in 2000 on the right side of my spine that would periodically act up which is why I saw a chiropractor. I also had a tipped pelvis that happened along the way, and then I slammed my right knee into an open low drawer last spring -- it made it really hard to know what was triggering what.

I saw my GP later and after mentioning that my chiro saw a pinched occipital nerve and my GP diagnosed me with occipital neuralgia. I joined an occipital neuralgia group on Facebook. He gave me Amiltriptylene, a neuro sedative that made it hard to wake up and take care of my kids. I didn't take it.

My MO and RO I saw and mentioned my stiff neck and shoulder to, they are at separate treatment centers and they both blew me off. Other people were taking care of these things, it was still never suggested that I might have cancer in my central nervous system.

So I wasn't going to go back to see the RO (she was an ass anyway) and the MO was about to retire. I asked both he and the GP if my GP could do my follow-up care, with guidance as he wasn't familiar with oncology. I have to believe that in spite of my MO agreeing with this that he never spoke to my GP or else the significance of my neck pain might have come up. Either way, total negligence.

My GP went on vacation and I saw a substitute GP, I was feeling worse and could not drive so I had a friend take me to the clinic at the hospital. The substitute gave me a bottle of Gabapentin, another drug for neurological disorders, but never suggested a brain or neck MRI. I got worse that weekend. Was this when you went to the ER? I was really sick. I finally sent an email to my breast surgeon who I am friendly with and she is very responsive to email. She said she would see me the next morning. I had my friend drive me and after an exam the surgeon had me admitted through the ER and later that day I had a neck MRI. The attending docs said, "do you want to get a loved one here or on the phone" and I thought it must be something really dire -- like a brain aneurysm or something acute. Oh, wait. I'm a cancer patient. "No, you can tell me, I've been all the dark places already." Then they proceeded to tell me about the large cerebellar tumor that they could only see a part of in the neck MRI.

In some ways this was a big relief. There was a reason I felt so awful and I was getting worse. But then it meant that for about 6 months I had uncontrolled cancer growing in my central nervous system -- what if it spread all over again. This was bad. It was also bad for my kids and family. I had an emergency craniotomy. I thought I was done for but I had an amazing comeback. The cerebellum is less essential to functioning and with my background in dance training movement synchronization was even more distributed.

Each day after that though, it was a blessing. I was in overtime.


Here's my soft list of cerebellar mets symptoms in increasing complexity in case it helps:

- Dizziness
- Loss of balance
- Increased pain upon waking, took a while to get used to sitting upright
- Sore neck and shoulder where I never injured them before
- Inability to carry a purse
- Symptoms of occipital and trigeminal neuralgia - driving pain sensations on right side of head and face
- difficulty walking
- need to keep head in straight, neutral position, started wearing neck brace
- inability to sleep flat on back
- needing to use ice pack on back of head to control pain
- increasing symptoms of pain and nausea
- uncontrollable nausea
- inability to self-care
- loss of appetite