Blog Post

So here I am, six months to the week since my diagnosis, and the "wait and see" approach has clearly come to a grinding halt. The tuber is done waiting.  My brain, my body, my mind know that something must be done.  

To get you caught up:

We returned home from our trip up north on Saturday evening.  I have so much to report about my healing, transformative, cathartic week in the San Fransisco area, but that will have to wait for now.  I experienced a huge shift while up there, with my tumor behaving nicely, and my body handled the travel, neuro-acupuntcture and visiting with friends with no noticible strain or symptoms.

Until Monday.  About midday, I felt a "mini-seizure" (my word for concsious seizure - pins/needles on my left side, ringing ears, metallic taste, etc.) coming on, so I thought I would rest and meditate it away.  Normally, 2-3 minutes of meditation and relaxation would take care of it, and it'd be gone.  But the discomfort lasted a few hours, and Boyfriend and I put a call into the ninja neurologist.  He suggested that we go pick up a prescription for a sedative to stop the seizure, and if no relief in an hour, advised that we go the the hospital for help.  

I spent Monday night at Santa Barbara's magnificent Cottage Hospital, not willing to mess around with the seizure that wouldn't go away.  My ninja neurologist, oncolologist, other doctors, Boyfriend and I are all working on a plan make it CLEAR to Medi-Cal that I need to pursue treatment NOW.  Not whenever they feel like finishing my paperwork and approving me, but NOW.  Strongly worded letters have been written, we're expecting a response in a few days to a week.  Having me in the hospital under observation and treatment solidifies the urgency of the situation, should any further questions come up (for poor, slow-on-the-uptake Medi-Cal) with regards to the current state of my health.

So that's the short version.  I don't have my head even remotely wrapped around treatment options.  When I do, I'm sure it will involve flow charts, calendars, and a crazy pictionary-style easel, and there's still a lot of data to collect.  My next few baby steps are focused on getting Medi-Cal approval so that I can get in with some neuro-surgeons, neuro-oncologists, and the like, who have seen cases similiar to my own, and will be better able to advise my on my Western options.  Complementary therapies remain part of the long-term plan and I will continue the neuro-acupuncture and energy work.  I am determined to keep my body and mind as healthy and strong as possible through meditation and nutrition.

Currently the tingles and spasms are still intermittent, so I'll stay put here at Cottage until I'm consistently comfortable - the forced rest and care are certainly good for me, and no better place than my hospital bed to wait out the word on Medi-Cal and weigh the options my various local doctors have to present.

Boyfriend is right by my side, and has been, but for the runs home to get supplies (a girl's gotta have her good shampoo and face cream!) and give Truly some kibble and a snuggle.  So we wait, with smiles, love and hope.  I'll keep you posted on any changes, I'm hoping for a powerful update soon.  As always, positive, healing light and energy help, if you feel inclined to share.  Love to you all!

Okay, maybe I can come close to doing it justice. 

We haven't left for San Jose, but tomorrow morning looks like a sure bet. 

We spent most of the day catching up from the week of certain uncertainty, fielding phone calls from doctors, social workers, healers, and patient "assistance" case workers, faxing this form, filling out that other one.  "So Lisa, have you signed form XR-87?"  WTF?

Today is my Love's birthday, and the only thing in the world that I wanted was for him was just ONE stress-free day, particularly after the series of wringers we've been through since April.  Tell the universe your plans...

So after the last phone call/organization attempt ended in tears, Boyfriend did what no man should have to:  he volunteered to drop everything, at 3:00 in the afternoon, to take a heap of paperwork over to Medi-Cal, the never-satisfied, clusterfuck of a patient financial assistance program that closes at 4:00pm, and holds my very life, my very future, in their hands.  And by drop everything, I mean laundry, packing, juicing, cleaning, and did-I-mention-it's-his-effing-birthday?  Yeah, probably.  All so I could finish up what I needed to with the organizing/packing/cleaning of my half of the equation, so that we can REALLY drive up the coast in the morning.

He just called.  He's at our favorite market, the Isla Vista Co-Op right now, picking himself up a delicious birthday dinner and raw, organic coconut cream cake (for which I have a candle!).  Are you picturing him with a mask and a cape yet?

I am.  Better hop in the shower and put on a cute dress!

Time to rise to the occasion.  And the Boyfriend.

Ahh, gratitude and reason - there you are! 

Silly Girlbert.  I'm the luckiest girl in the world.

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.

You may recall from my previous post that in addition to all that empowerment I recieved at my last doctor appointment, I also received an increased dosage of my anti-seizure drug, Keppra.  At the time of the instruction to increase my dosage by 50%, I thought, "Oh, so I'll be a little more tired, a little more out of it - it's already in my system.  No prob."  

WRONG!  Business as usual for a couple of days and I found myself barely able to move from one horizontal surface in my 900 square-foot house to another.  

I used to call it the crazy medicine, but it's turned MEAN.  It's certainly doing what it's supposed to be doing - I've been seizure-free for over two weeks.

First came the physical fatigue.  Then the hysterical crying.  Shakiness.  Dizzy spells.  Soon I was fighting relentless headaches that had me convinced that my head was going to explode.  Blood and brains everywhere, all Quentin Tarantino-style.  Really.

My efforts to meditate the pain away, previously successful, were completely useless, nausea-inducing and painfully frustrating.  Boyfriend was at a horrified loss, and I didn't know how to express the pain I was in, but to cry harder.  I either slept all day and night, or couldn't quiet my mind enough to sleep for a day or two.

Before I realized what was happening, I had no control of my own mind.  "That's below the belt, Keppra."

So back to that previous post.  The one in which I claimed to have recieved an extra-large helping of empowerment, no extra charge.  Shortly after I hit "publish" I must have reached my validation-via-internet quota or something, because my brain turned into a gooey marshmallow and began to ooze out my right ear.  And Girlbert and her empowerment were never seen or heard from again.

But WAIT - that's not how the story ends!  While I may not have been able to put a sentence together for a while now, much less come up with a witty, insightful post, I am trying to process and document what just happened, if only to truly acknowledge the lesson for myself.  So if you will just humor me, I might try to do that right now, albeit with a marshmallow for a brain.

This week made me realize that I've been going about my quest to "Heal Thyself" from not exactly the correct angle.  My outlook has been all skewed, so to speak.  (My high school geometry teacher, Mr. James, would be sooo proud.)  All the health food and juice, kicking my own ass into action and positivity.  Boyfriend's repeated suggestions to rest, meditate, STOP WORKING - ignored.  "You need to work on your mind, or it doesn't matter how healthy you eat."  But I was completely missing the forest for the trees.

Not letting anybody help me, because I was responsible for healing myself.  And I would be calling the shots.  Seeing as how it was my brain tumor and all.   Each good day I had I'd think, "Look at me, I'm going to go in for my next MRI and this stupid tumor will be gone.  I'll show them - I don't need ANYBODY."  And then the universe uses that moment to show me otherwise.

You think you don't need anybody, huh?  You think you can do it all by yourself?  How about I take away your rationality, bodily function and will to live for a minute.  How about then?  Bet you need some help now!

The universe always wins.  Because I wouldn't have survived the last week (much less the last year) without relying heavily on people who love me and want to help me.  So when Boyfriend picked up the inconsolable, lifeless shell of my former, fabulous self off the floor and set it on the couch, emergency-dialed my spiritual guide/channel/healer for a long-distance healing and handed me the phone, I knew better than to resist.  

"Hey darlin', what's going on?"  Tears of relief ran down my face at the sound of her voice, and before I could reply, she began, "Lose the guilt - everybody WANTS to help you.  You're staying on the planet, in your body, because you have a lot to offer in return."

An hour later, I saw a glimpse of myself in the mirror for the first time in over a week as I brushed my teeth.  Then I went to bed and slept for 13 hours.

The next morning morning I woke with a headache, but I meditatively karate-chopped it, and it cowered in the corner for the rest of the day. That's right! I might kick you again!

Lesson in progress: I'm nobody without the amazing people I surround myself with.  By opening myself to this lesson, I have regained the ability to meditate.  I have reopened myself to the endless supply of love, support and positive energy and am realizing how much more power I have to heal.   Opportunities to give back are currently presenting themselves as I can handle them, and it feels so good to give!

I have my next two-month MRI tomorrow morning (Tuesday, 9/8/09).  I am open to receiving positive, tumor-shriveling energy, starting right now.  I can't wait for the amazing results, and I will certainly let you know how hard my (Ninja) Neurologist's jaw hits the floor.

Hello Keppra - I see you, and I plan to match your merciless side affects with kung fu meditation and a little help from my friends.  You, too, little tumor.

UPDATE 9/9/09, 2pm:

Yesterday I was turned away from my second two-month MRI because of a miscommunication between doctors, staff and the myriad of patient financial "assistance" programs involved.  THE GOOD NEWS IS: I have received authorization for the MRI, and have been rescheduled for 5:30pm this evening - so BONUS tumor-shrinking time for me!  I should still be able to have my MRI in hand for the appointment with my Ninja Neurologist tomorrow, so I'll keep you posted on the good news (and jaw-dropping!).

May the girl-nerd win.

Try as I might, it's impossible to stay calm and relaxed if my partner is anything but.

Boyfriend is struggling to keep his head above water as I've cut back on my work-load (read: he's doing it ALL - did I mention he's a superhero?) He's been working increasingly long hours, juggling our little shoestring-operation by himself as we take on our very first paying web clients.  Yesterday, in the heat of some kind of anxiety-fueled frustration, he looked at me and said, "You're just going to have to get it together, because we have to pay our bills."  

Note to anyone who ever has to live with someone who has a large tumor in the emotional center of her brain, is on anti-seizure medication that sometimes heightens, or then again sometimes dulls, her senses, and never has never been good with stress, anyway: NEVER tell her that she's "just going to have to get it together." Those words actually cause her brain to go numb, if not melt into a puddle, and greatly increase her risk of seizure.  

And it was a doozy.  As I was lying in bed, going over the day's many low points, internally wording comebacks at everyone with whom I've ever been pissed, wishing Boyfriend would just LAY off, but feeling terribly GUILTY that I'm no help on our quest for financial stability WHATSOEVER...

Shit.  I'm having a seizure.  I've given myself a fucking seizure.  "Honey, wake up - I'm having a seizure."

Later, I asked him how long it lasted.  He thought one to two minutes, but it felt like twenty.  Stronger than the last one, and I hadn't even missed any medication.  Double shit.

It just so happened that I had an appointment with my neurologist today.  I was unreasonably nervous - I hadn't done any of the "homework" he'd given me since my last appointment, six weeks ago: check out treatment options and alternative therapies, get an appointment with a neuro-oncologist for a second opinion.  And now I was going to have to tell him that I'd had not one, but two seizures since I saw him last.  I felt like the bad kid, having to tell my teacher "the dog ate my homework".  Just lame.  I pictured my Ninja Neurologist, all disappointed, writing me off, for not doing my part in my own treatment.  I pictured myself, begging him not to give up on me.  Making 'excuses' for myself, like, "I had so much paperwork to fill out, we have rent and bills to pay, I did a lot of research on raw foods, completely changed my diet, and am working on a divorce-related, patient-financial-assistance stumbling block!  Did I mention all the county and state patient assistance paperwork?  Wait!  Come back!"

Was he disappointed?  Maybe a little.  Did he threaten to write me off?  Nope.  Just offered ideas, and words of encouragement, and emphasized the importance of pursuing treatment options.  He recognized the validity of my brain-cancer-damsel-in-distress, and swooped to the rescue with rapid-fire solutions:

"The patient assistance programs are so frustrating and slow.  I'm going to have you to talk to Swami, one of the social workers here - he's really good - because this needs to change.  I can see that you've done all you can and you're not getting anywhere.  We need to get you scanned again, but I don't want to order an MRI until you have some financial aid lined up, because I don't want to keep racking up bills for you to worry about.  If you're having seizures, that's not good.  I'd like to up your dosage a bit - from two pills a day to three."  By the time we got to the meds, I was relieved - man, do I hate those damn seizures! 

Once I figured out he really was in my corner (AGAIN!  Why don't I get that?), kicking some brain tumor and state-funding ass on my behalf, relief washed over me like a delicious shower in a world with an endless supply of water.

So my Ninja Neurologist got me all lined up to talk to my new Swami Social Worker, who was nothing short of amazing.  He's the first social worker (in a long list) I've met with who's been empathetic, but savvy and insightful.  I'm smiling right now as I think about his encouraging, knowing grin.  He actually told me, "You've done everything you can do and should do.  You're way ahead of the game - but it's an undignified process.  In fact you're standing at the crux of what's happening politically and socially in this country right now.  It's ridiculous.  It's disgraceful.  And you're a living, breathing example of why it needs to change."

Hello, Empowerment.  Nice to meet you.

I did it.  I finished my latest stack of applications and forms.  Apparently I'm getting more efficient.  I've made myself organizational binders for instant access to all of my frequently requested financial information.  Yes, the divorce decree is in there, too.  Right at my fingertips, for easy reference.  Woo hoo!

To celebrate, Boyfriend and I are going to have a good laugh at ourselves with this clip, aptly called 'Intensive Caring'.  Just imagine that Greg is not a lawyer, but a web developer (computer nerd).  Enjoy.

Despite my very best efforts to keep myself relaxed and low-key, last week was harried at best, CRAZY-STRESSFUL at worst.  Try not to worry, I'm getting enough sleep.  Whenever it gets to be too much, I take a deep breath, move away from the pile of applications, forms, bills, and financial documents (Do I get to get out my divorce decree AGAIN?  Yippee!) that is consuming my life, and take a nap.  Right after a good cry.

So to keep my list of obligations as short as possible, I'm going to be posting pretty lightly for a while.  (As if you haven't already figured that out!)  Please feel free to submit all your raw food recipes so that we can keep the masses happily fed with yummy health food until I can get back to cruising the net for raw food resources and recipes to make and photograph.  (This is me asking for help...Anyone?  Anyone?)

And if any of you are experts at organizing paperwork regarding financially complicated divorces, untangling yourself from financially complicated divorces, sweet-talking county and state medical financial aid representatives, consolidating large amounts of unsecured debt, speaking fluent social-security-disabilitese, or otherwise know how to SAVE ME FROM THE FINANCIAL DISASTER THAT IS MY LIFE, feel free to apply for the unpaid position that is available through the Contact page of this website.  Good luck - I'm sure it will look like a mob-scene with all the emails crowding my inbox at any moment...

No woe-is-me comments.  I'm asking for help, if anyone has it to give, but I'm still laughing.  This will all work itself out.  Someday...

This is the pile of books, well, most of them, next to my side of the bed.  I've got a few more on the floor, in addition to a couple of notebooks and long lost (mechanical) pencils.  As in, "Where are all my (mechanical) pencils?  I just bought a ten more the other day!"

I was compelled to picturize and post my pile of reading material for a couple of reasons.  The first being that it is far more attractive and interesting than other piles around the house currently calling my name - the pile of laundry on the bedroom floor, the pile of bills waiting to be opened on my desk, the pile of mending on the kitchen chair, and the pile of medical forms and supporting documents on my dining table.  Blah.

The second reason is much more entertaining - this pile of books reminds me of when Boyfriend and I first got together, a mere year and a half ago.  The first time he saw my bedroom, he noticed a similar pile of books on the table beside my bed.  "I knew I liked you - look at all of those books you're reading at once!"  I had figured we had similar reading styles - reading as many books as possible at a time, in an effort to learn as much as possible, as quickly as possible.  One of many topics of discussion in our pre-dating correspondence was our mutual interest in learning new things.  

So the first time I laid eyes on his bedroom, I laughed.  Books.  Not just beside the bed.  EVERYWHERE.

Yay for books.  Yay for learning.  Yay for mutual interests and fresh beginnings.  Yay for reminders of why you got together with the one you love.

The other day I decided that a proper summer haircut and a sundress consituted as an emergency, because I used the credit card that my mom gave me for emergencies to treat myself to both.  Then I called my mom and thanked her.  I told her I'd get her a picture, so here it is.

There are only so many days in a row when five-year old shorts from the Gap and a pony-tail will do, no matter how awesome your body feels.  My mental health was at stake, folks.

My shaman friend tells me, "It's not a vanity move - fix yourself up, dress up so that you feel your best, then you can be your best."  

Consider yourselves warned - I will be getting dressed and brushing my hair every day.

View more images here, Mom.

Last night my brain turned to me and said, "RELAX.  Or have another seizure - your choice."  

Oops - I guess she was serious.

I was getting ready for bed around nine o'clock - early for me.  Brushing my teeth with the ultra-sonic, and suddenly more than just the toothbrush was vibrating on my left side.  I turned the brush off and set it down, spitting as I grabbed the sink with both hands.  "Darling?" I called to Boyfriend, "Please come here."

He was right there.  "It's happening again, I'm having a seizure. My left arm and leg are vibrating."

"Okay, just breathe.  What do you feel?"

I grabbed him and sunk to the floor.  "My left side is on pins and needles, tingling.  And the sharp noise, like ringing, in my head. And that terrible taste in my mouth."

"Does it feel like before?"

"Yes, but I feel like I'm having a flashback or something, too.  I see pictures, I hear music - it seems familiar, but scary and yucky."

"Just breathe.  It's all in your mind - slow your mind down.  You can control your mind.  Tell the vibrating to stop.  Tell the sound to stop and the taste to go away."

I did.  And it was over.

But I had had another seizure, and it sucked.  I had forgotten to take my morning dose of anti-seizure medication.  Not the first time, but then I proceeded to have a very active, obligation-ridden, stress-filled day.  Another hang-up in an already long overdue project.  Tried to plan just how I was going to cram everything into a shortened week, with Boyfriend leaving to sail on Friday morning.  Laundry, cleaning house, and a 2-hour bike ride.  Wow - certainly a lot for the average person, not to mention a seizure-prone ball of stress who forgot to take her medicine.

I'm now enrolled in 'Taking Care of Yourself 101'.  This is the only course I've ever taken where a Type-A personality seems detrimental to the student.  Do you think there's a slow class?

I took my dose of Keppra immediately upon waking this morning.  Then I used a regular toothbrush to brush my teeth.   After juice, I followed Truly's lead, and we took a NAP.

Apparently my brain is serious, so I'm taking this lesson to heart.