brain cancer

So today didn't go according to plan.

The plan was to:  A#1)Take driver's test.  B#2)Pass with flying colors.  C#3)Get driver's license back.  D#4)Drive myself to my doctor appointments, pick up groceries, or, omigosh, go see my horse!  The possibilities were endless!

Ambitious, yes, but I'm nothing if not a little determined to make up for lost time these days.  More often than not, my haste to check things off my list comes at my own detriment when those plans mysteriously fall apart...

Me, through frustrated tears: "I like having a plan.  Plans make me comfortable.  But I'm going on two years of nothing going according to plan."
Boyfriend: "I know..." he chuckled and gave me a squeeze, "but let's learn from it, okay?" 

So, I laughed too.  I know that once I can laugh about it, I can learn from it, and this lesson was begging for my acknowledgement.

Sometimes, it feels like the same lesson, on repeat.  I miss something, make a mistake, and the Universe just hits the Play button again.  A lighted placard, patiently illuminating the words "Try Again".  My own little Groundhog Day...

Sometimes I see it right away and laugh with Her.  Sometimes the irony of a lesson slaps you in the face so hard, you can't even see straight right away.  The lesson becomes so profoundly clear, you have to admire the creator of the lesson.  And then you realize it's you.  YOU put yourself in that place to learn THAT.  All the while, She's begging you:  Are you getting it yet?

Like when you go to take your driver's test, after over a year of not being able to go anywhere by yourself.  You're on time, you have all of your paperwork.  And you're at the wrong DMV.  That's right - I drove to the wrong place to regain the ability to drive by myself.  Hmmm...

Today I lost my patience with Her and yelled, "What the F#%*k do you want from me?" 

And She shot right back, "For you to do better."

Right.  I can, and I will.  Three more weeks, but next time, I'll be at the right DMV.

It's been over a year since the event that led to my diagnosis.  Apparently this blogging thing is hard to keep up with when you're not all hopped up on steroids, so I haven't been keeping you all as up-to-date as well as I would like.   Not to mention the fact that all of my excess energy has been channeled toward growing a brand-new head of hair!  (Evidence in the picture!)

So - I've compiled a list of questions that I find myself answering.  Frequently.  I've added a NEW PAGE (a link in the menu above, as well) to this site for those questions, but here's a little teaser:

What and when was your diagnosis?
I was diagnosed with a type 2 astrocytoma in my right temporal lobe - brain cancer - April 27th, 2009.  I'll never forget the date, because I had to make sure and write a blog post honoring my little brother on his 30th birthday (April 26th) before I went to the hospital for what seemed like a possible concussion.  It's important to have priorities.

How did you discover your brain tumor?
I had a seizure while home alone April 24, 2009.  I had been getting ready for bed, it was late, and I brushed my teeth and washed my face.  Then suddenly, I found myself, 'coming to' at my desk, in front of my computer, which had been shut down already.  "Huh - I thought I already went to bed,"  I thought, and went to bed.  I had no history of fainting or seizures.

The next morning I had a headache.  And a fat lip. And when I got up to pee, I noticed the bathroom rug was all wadded up in the middle of the bathroom floor.  Something wasn't normal, but maybe I just tripped and fell in the night and hit my head and didn't remember.  When Boyfriend returned home later that night, and I told him what happened.  The headache persisted.

The following morning the headache was worse.  We talked about going to the ER to see if I had a concussion, but I didn't have insurance and we were broke.  I'd had a head injury before - I knew they'd want to do a scan - cha-ching!   So I decided to take a nap.  After I laid down, the left side of my body began to tingle, my ears began to ring and I detected a horrible taste in my mouth.  (I now refer to these feelings as my 'conscious seizures'.)  I was scared, so I called for Boyfriend, and described what was happening.  It was very uncomfortable, something was definitely wrong with me.  It was time to go.

Boyfriend called his boss about getting his payment for work early so that we could go to the ER.  His boss said, "You just take her, and I'll take care of it."

So we went.  As soon as we got to the ER, and the words "hit my head" escaped my mouth, I was put in a neck brace and strapped to a gurney.  Here we go, I thought.  I had a CT scan and was brought back to a waiting room with Boyfriend.  I had another 'pins and needles' episode, telling Boyfriend, "It's happening again, I'm having that feeling again!"  He called the nurse and she gave me an anti-seizure drug.  She explained to me that what I was feeling was a mini-seizure, that I'd probably had a grand mal seizure at home two days ago and hit my head.

Then the doctor came in. "We looked at your scan.  I'm so sorry, but you have a very large tumor in the right side of your brain.  That is probably what is causing the seizures.  But you need to go to the other hospital for observation and to have an MRI."

Boyfriend was holding my hand, so I squeezed it, looked at him and the tears started.  "I'm so sorry," was all I could think to say.

His face was already even with mine, his eyes locked on my teary ones, "We'll get through this, don't worry."

One wipe with the back of my hand, and the tears were gone.  Of course we will.

More...

My March round of chemo came just after my return from traveling, so the down time was almost a welcome relief, even if I didn't feel so hot for a week or so.  When it was over, I started to exercise again, even rode a horse a few times. (Woot!)  I was even thinking about teaching some riding lessons.  Getting into a routine felt normal, and I've been craving some normalcy for so long.  It's spring, after all, the perfect time to start making some plans!

Then it was time for my April (this week's) round of chemo.  The day before I was to start, I told my brother, "I'm not even nervous this time!  This one will be easy, I just know it."

Easy.  I said it.  And I believed it.  But easy it was not.  It's been a rough week.  Chemo was as bad as I remembered it, if not even just a smidge yuckier this time.

I spent most of the week that I was not in bed in a puddle on the couch.  Just pouring myself from one horizontal surface to the next.  Catching my breath on the toilet every time I had walk to the bathroom.  Spending a lot - too much - time reflecting on the absence of normal in my life.  The absence of normal in Boyfriend's life, too.

Then I went to my Cancer Support group last night, and the evening's focus was the caregivers and significant others of the cancer patients and survivors. "Cancer Couples Night", if you will.

Boyfriend and I shared our two cents about how hard we've worked over the last year to find our way in the maze that is brain cancer, unemployment, and Medi-Cal. And despite all of our hard work and effort, sometimes it seems like it will never end.  And we listened every other couples' story, and realized, They're doing it.  We're doing it.  And suddenly the only feeling I had left was amazed, awestruck gratitude for the man sitting to my left, squeezing my hand as we talked.  My teammate. Squeezing my hand as we listened.  My biggest fan.  Squeezing my hand and wiping my tears when I cried.  My superhero.

Thank you, Eric, for showing me how to love and be loved.  You are the squeeze of my life.

Dear Readers,

Cross your fingers that my Medi-Cal card comes by the time I get back to California next week, so I can pick up my next round of chemo on as soon as I get home.  Everybody is getting really tired of hearing, "I'm still pending for Medi-Cal."  Myself included.

Even Betty White is up in arms about it!

XOXO,

Girlbert

I received this fantastic email from a friend, then passed it on to a handful of friends, one of whom posted it on her blog.  Huh.  There's a novel idea.  Well, YAHOOIE for that, because I get to put some new content on my site without having to write much.  Which is good because I'm on my monthly dose of chemo this week, and the writing's just not flowing...

They call this chemo-brain.  It's like the process I have to go through to convice myself that taking a nap is better that just being a grouchy blob on the couch just to be upright for a few hours a day.

Anyway, this is a great story.  Enjoy!

One evening an old Cherokee told his grandson about a battle that goes on inside people. He said, "My son, the battle is between two "wolves" inside us all..

One is Evil.  It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.

The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith."

The grandson thought about it for a minute and then asked his grandfather: "Which wolf wins?"

The old Cherokee simply replied, "The one you feed."

Is what people usually say when they learn of the size of my brain tumor.  And it was.

Monday was scan day.  Tuesday I received this voicemail from my Ninja Neurologist:

"Hi Lisa, I just wanted to let you know that I looked at the films of your brain taken yesterday, and good news - everything looks significantly better.  There is a substantial decrease in the size of that mass.  And the degree of shift caused by all the swelling is almost completely resolved, so it looks like all this therapy is working.  Just thought you'd want to know - see you later this month."

Tears running down my face, I did the Tom-Cruise-couch-jump-for-joy, right then and there.  Oprah even came over for it.

Wednesday I saw my Uber-Oncologist, and he confirmed the HUGE-ness of the news - my latest scan does in fact show a significant decrease in the size of the tumor - from 8.4cm long X 4cm in diameter to 6cm long X 3cm in diameter. More than a 50% reduction in volume!

He concluded our meeting with, "You can move up north anytime, as far as I'm concerned."

Can you feel me smiling?  Talk about HUGE.

[Oops - we forgot to post this one!]

Hi, Boyfriend here.  I'm writing because Girlbert continues to struggle with nausea, fatigue, and the lingering remains of another cold and as per Boyfriend's orders is resting on the couch.

This Christmas is, alas, passing so quickly.  And well, it continues to do so.   Today [Wednesday]  we dealt with three separate legal / financial matters and two different health issues.  Tomorrow we get to wrap a few presents for each other.  And go to the clinic for blood work.  But, "quickly" is relative and it doesn't seem to matter how old you are - Christmas just goes truckin' on by all the same.

Recently we drove to the barn to visit Lisa's old and ailing horse Stevie; and while Lisa licked Christmas card envelopes she read the names out loud.  It was a long list.  But one that should have included even more.  All we could write were a few brief lines.  "Merry Christmas!  Love, Us".

As I drove, listening to Lisa, I thought about how little that is.  And about how many more we were leaving out.  All the same, it was one of the few things we could do, it took Lisa a lot of effort and was so rewarding.  The only other thing we've really been able to do is for a neighbor, T. who doesn't eat as well as he ought.  Every so often, Lisa makes a tomatillo salsa and we bring him some because he loves it.  It's the smallest thing but it can mean so much.

It made me think about my Uncle's brother, G., who has Down Syndrome.  Every Christmas for as long as I can remember, he'd politely open his presents which were always pens and the notepads he so loved "writing" in.  But the best part for him is passing out the presents - that's when his eyes sparkle with joy.

On Monday afternoon we went to the ER.  We had packed for who-knew-how-long a stay in the hospital - every time we'd been to the ER in the past she'd been admitted.  Lisa had a 100.9 fever and with a very low white blood cell count, her doctor thought we needed to go to the ER for more blood tests.  Her white blood cell count was still the same old low it's been for months now so they percribed an antiboitic just in case and let us go home that evening.  

This year, we have so little to give, not just in gifts, but in time, presence and energy as well.  And medically, there's nothing anyone can give Lisa that will change much at this point.  So we're just plain grateful for our friends and the ability to go home and have a normal day.

That's really the best Christmas present ever.  No one on earth can give that to you.  But it's something we're just eternally grateful for.  Christmas passes quickly - savor every day.

...that I don't bitch and moan on this website.  It's not that I'm trying to hide anything, it's just that I fully believe that there is an upside to everything.  For every bad, there is a good.  Even if the good is not visible on a given day, it's just ahead, I just have to be patient, or learn the lesson.  Never mind that it''s generally far more healing for me to write about the positive than to dwell on negative.

But I've been really crabby and ungrateful - last week was a hell of a week in terms of medication and side effect adjustments.  As in goodbye steroid-induced manic superwoman, hello and welcome back, Keppra-induced brain fog, headaches and fatigue.  

So I was preparing a terrible, long-winded post about breaking my rule, insert bitching and moaning here, a little "poor me" on top, and just before hitting publish...

The mail arrived.  With a package from someone I've never met in person, but who has become a good friend via email, Facebook and blogging since my diagnosis.   Laurel Hermanson sent me a copy of her novel, Soft Landing, and a gift card to Trader Joe's.  Wrapped in Girlbert-green paper, tied up in a shiny, brown bow.  Oh, and a lovely card with a very touching sentiment.  It made me laugh.  It produced a smile from a face puffy and tear-streaked after days of hysterical unreasonableness (poor Boyfriend!)  I wanted to run right up to Portland and hug her.

Someone I've never met.  Wait - there are so many of you whom I've never met.  And you send your positivity and love and well wishes and kind, generous gifts.  And suddenly I remembered all the people and things I have to be grateful for.

I already know what you're going to say.  "What've you been on vacation or something, Girlbert?  We're all just waiting here, holding our breath for over a week, because we're all wondering if you're in the hospital, had your final seizure or something equally horrible." 

I did take a picture of a bird.  I posted my most fabulously indulgent holiday pie recipe.  I've read several magazines.  Even watched a movie.  It has been a vacation, I guess.  Not having to maniacally be at doctor appointments, radiation treatment, picking up prescriptions, keeping track of a five-times-a-day medication schedule... It's like I haven't taken a breath for over seven weeks, and I'm finally getting some air.

So... how about that UPDATE? 

My docs have me tapering off the steroids and I can't tell you what a relief that is.  I've been on Decadron for almost three months, and I didn't realize how numb and weak I'd become until I fell walking up the steps to my deck on Thanksgiving.  Despite some pretty gnarly-looking scrapes and bruises, I felt no pain, whatsoever.

Now I'm on day 10 of an 18-day steroid taper-down schedule and today is the first day I've been able to see my computer screen clearly.  And it made me realize that I could now see, hear, and think with a clarity I've not had for months.  I've nearly stopped shaking, stumbling, dropping things.  I slept through the night last night for the first time since September.  I feel the pain in my legs from my fall and I'm grateful for it.  I'm ALIVE.

So I'm beginning to carefully put myself back in order.   I've started practicing yoga again and already feel more coordinated.  (But an inverted pose did make me pass out - oops).  Boyfriend and I have taken walks the last 3 days, and I've felt stronger each time.  I'll be riding horses and mountain bikes in no time, right?

I don't have an MRI or doctor appointment until the end of the month.  I'm not cleared to travel by plane anywhere, so Boyfriend and I will be taking it easy around here for the holidays.  I'm listening to Christmas music, planning, shopping, enjoying the season.  Isn't that what normal people do this time of year?

Clearly.

Yesterday was my last day of radiation treatment!  And what a day it was.  Just pure joy, thankfulness, another undescribable, words-just-can't-touch-it-kind-of-day.  But of course, I will haplessly attempt it...

I picked up celebratory cupcakes at Crushcakes Cupcakery (they were fabulously accomodating, again!) for all of my my now dear friends at the Cancer Center of Santa Barbara, Santa Barbara County Clinic and Pharmacy, and other doctors.  As I went to my final treatment, last day appointments and picked up my new assortment of medicine for the steroid taper-down (WOO HOO!) that will occur over the next month, I found myself sad to say goodbye, but hoping the next time I see them is at the grocery store, in a restaurant, or the theatre.  Where I will run up and give them hugs, and they'll wonder who is this girl, all healthy, and with hair?

So what's next for Girlbert?  Well, there's certainly no going back to normal, since there never really was a normal to begin with. 

But I tried as best I could to allow myself to do as much of NOTHING as I could muster today.  Boyfriend, too.  But with all the activity, the schedule of having to be SOMEWHERE, six days a week, often changing multiple times a day, with a moment's notice, there's certainly a lot of catching up to be done.  Medi-Cal denial still waiting in the wings.  Social Security paperwork and requirements to tidy up.  Charity applications to fill out.  And the regular stuff of figuring out how to cook, clean, and work to pay rent and bills.

My next MRI and doctor follow-up appointments aren't for over a month - after the holidays.  My doctors tell me that although the chemo and radiation have stopped, changes will continue to occur over the next month, and so a picture and any discussion aren't necessary until then.  So more wait and see.  But time to rest and enjoy the holidays, which is a tremendous blessing!

And finally, some more attention for my horse.  I might even read a book or a magazine.  Or take a picture of a bird.  Let the real healing begin.