On Our Way to San Jose

There was no jaw-dropping.  Unless you count mine.

My Ninja Neurologist was straight to the point: "I saw your MRI.  It looks like the tumor has gotten bigger.  I don't think those were side effects of the medication that you were experiencing.  I think it's the tumor causing all the headaches and the pain.  You're going to need to do something soon, or you could die of brain cancer."

For all my disappointment, I smiled and said, "I'm not going to die of brain cancer." 

"Okay."  He smiled back, but there was no mistaking the worry on his face. "So get on it."

For as brave as I wanted the world to think I was, I just wanted to cry.

But an hour's worth of just-the-facts-ma'am, yet empathetic, conversation with Ninja Neurologist and Superhero-Boyfriend gave me the kick in the ass that I was probably needing. 

Boyfriend and I had both been certain that the evil Keppra was the cause of horrific previous two weeks, before two, completely unexpected, mild seizures on Wednesday (just when I was feeling better!) introduced a shadow of doubt.  But now we are both with the good doctor, my Ninja Neurologist in shining armour.  The evil brain tumor must be dealt with.  And the sooner, the better.

A pre-emptive plan was established: My Ninja would do what was necessary to make a another, updated referral to a neuro-oncologist at UCLA.  Then he'd put in a request for authorizaion with the various patient financial assistance programs still determining my eligibility and tfighting over who's problem I was.  I would have to resume my role as the squeaky-wheel-from-hell-brain-cancer-chick, which involved tearfully explaining the urgency of my situation to a number of people who really don't care.  Not that they could speed up the process, anyway.

My Swami Social Worker has been brought up to date and is all over assisting me with translate the process into girl-with-brain-tumor-speak - seriously, it would hardly be possible for a person with a fully functioning brain to do this.

A call from my uber-oncologist this morning confirmed by Ninja's take on the MRI.  "I think its time to start pursuing treatment." 

That's it - Girlbert is officially with the majority of opinions involved.  Weird.  But so good to have a team you really trust behind you.

Today is Love-of-my-Life-Superhero-Boyfriend's birthday.  I can't possibly do my feelings for him justice, much less provide you with more detail regarding yesterday's events, considering my current state of mind and the fact that we're leaving in just a few short hours for a drive up the coast to San Jose and on to San Fransisco, for a dual-purpose road trip.  I will be seing a Neuro-Acupuncturist for a series of treatments while we're up there, and we'll be relaxing with friends and nature to celebrate and remind ourselves of the beautiful life we have together. 

So despite the fact that today is his birthday, I'm going to let Boyfriend explain further, taken from an email he wrote to family and friends earlier today:

MRI "take 2" went well but Lisa had a small seizure afterward in the lobby.  She still wanted to meet friends she'd not seen in months so after a quiet dinner we met them after their Wed. night racing at the Santa Barbara Yach Club.  She had another seizure at the club.

Her neurologist explained to us yesterday that the MRI shows a slight increase in size of the tumor.  It's "within the standard error" of the machine so all we can do is read between the lines.  But quite clearly the tumor hasn't shrunk and there's swelling as well that has been the cause of both seizures, headaches, dizziness etc.  He put her on two weeks of steroids which should reduce the swelling and another increase of the anti-seizure med. It's not the best of news but it is not the worst either.  It is most certainly a kick in the ass which she needed.

She is a bit blue I think because of the uncertainties.  All her new symptoms coincided with an increase in her meds.  And with how wacked out they make her and how strongly her oncologist feels about stress affecting her brain physiology, that uncertainty certainly seems plausible.

Then there's potential new plant based 'chemo' agents in clinical trials... But which phase, who to talk to ...  Up until yesterday we weren't even sure what this week would bring.  So we're both embracing Uncertainty.

As I write this, she is speaking with a long time friend and spiritual healer.  That's a side she feels she's been neglecting.  And we're leaving today for San Jose for neuro-acupuncture and Chinese herbs.  (It was only two years ago that Western medicine found that licorice, an ancient Chinese cancer treatment actually *does* have tumor fighting properties.)  Lots to do.

Again, thanks for the support.