positivity

It's Valentine's Day, so I'm going to write a little something about love.  Before you start rolling your eyes in expectation of something goopy about my (fabulous) boyfriend, I want you to know that I'm not talking about romance.  I'm talking about love - the unconditional love that exists between us all.  The love we extend to a friend, or even a stranger, when she needs it the most.

Since last April, I have learned, in a most profound way, to be on the receiving end of more love, kindness, selflessness, and generosity than I thought existed in the Universe.

Thank you, all of you.  I'm sending a whole Universe-full of warm, sparkly love back to you.

Stop listening to the naysayers, the doomsdayers, and the Negative Nellies.  Because the only thing that matters in this world is LOVE.  And you'd better believe that the more you give, the more you receive.  So put it out there.  There's more than enough for everyone.  You do have time for love.  We all do.

As I stood at the kitchen sink this evening, on my own two feet, washing the dishes that I had just eaten dinner off of, not feeling nauseated or woozy or sick in any way, I thought, "Things are looking up!"

And BOOM!  I had a post to write.  

This week marks two years for Boyfriend and I.  We had our first date two years ago this very week.  Things were most certainly looking up for me then, just having moved to California from Colorado, I was looking forward to a fresh start.  Just like we are now that I've gotten through chemo-radiation and my first five days of monthly chemo.  We now know what to expect (chemo sucks for all five days, plus three or four after) and are looking forward to a little more fun in the year ahead.  A fresh start.

The first date story:

I met a cute sailor on a wine tour on a previous trip to California.  Now that I was here, I had invited him up to Los Alamos (from Somis, about 100 miles!) for lunch, and if he wanted to stay for dinner, I would love to cook him dinner, too.

Lunch was a bold statement about the way I like to eat – pasta sautéed with tuna, capers, garlic, and anchovies in olive oil.  He was impressed at this brazen combination of flavors for our first meal.  After lunch, he wanted to take me on a drive.  It had snowed in the mountains the day before, and wouldn't it be fun to go check it out?  I thought, a spring snow – how nice.  Didn’t I move here all the way from Denver because I can’t stand the snow?

After a beautiful, winding drive up the mountain, we stopped and got out of the car to check out the view.  We were standing at the top of a mountain overlooking the Santa Ynez Valley, arms wrapped around one another for warmth, and he explained that all of the green leaves in the trees are mistletoe, which is actually a parasite.  Mistletoe live in the trees, getting all their nutrients from the other organism.  I had no idea - a real botany lesson!  So, it’s windy, we’re freezing (did I mention the snow?), and we get back in the car to drive down the mountain.  

He's pointing out the mistletoe growing on the trees on the way down, and we drive under a bit of it growing over the road.  He stops the car, and says, “Look up.”  I’m thinking this is going to somehow further my education about mistletoe and associated plant life, so what do I do, but what I’m told.  I look up out the sunroof, and there is indeed a clump of mistletoe hanging over the car.  As I turn my head toward him to smile, my mouth runs into his.  That certainly did further my education about mistletoe – not in a way I would have guessed, but  it did, nonetheless.

Things are looking up, as long as you know where to look.  Keep looking up!

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 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 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.

My dad writes of this 1978 photo, "...both you and your dad had hair."

How cute are we?

I'm certainly not missing my hair or saddened by the loss of it, thanks to a number of factors:

The first being that I find it quite exhilarating that I can get in and out of the shower, dressed and be out the door in 15 minutes.  That's crazy, even considering the fact I've always prided myself on being a pretty low-maintenance horse girl, comfortable popping a ball cap over a pony-tail most days.  Even when I wanted to get a bit gussied up, I was a 45-minute-max, shower-to-door-girl.  No all-day, multiple-hour beauty routine for me.  But 15 minutes?  With a shower?  Wild!

The second, of course is that Boyfriend continues to be fascinated by my baldness, loves to shave the left side of my head to help me keep it even, and tells me how cute and sexy I am, ummm, pretty much every opportunity he gets.  Feels good.  And I continue to feel like I won the Boyfriend lottery... How is it that a girl could be so lucky?  Sigh.

BUT - I have become OBSESSED with other people's hair.  I find myself staring at peoples' hair, wondering, Should I try something like THAT?  After years of KNOWING my own hair, and what I think works for me, my face, my hair type, color...suddenly there are SOOOOOOO many options.   And it would have NEVER crossed my mind to cut my hair short previously.  NEVER.  I'm going to be forced to try some short styles as it grows out.

What about highlights?  And why not some fun with colors, too?  Blonde?  Red?  Things I would have never entertained previously because the committment would be too permanent on longer hair.  People have also told me it may very well come back different - curly, thicker, finer, straighter.  I can't wait to see what I have to work with!

So in light of the fact that Monday is my LAST DAY OF RADIATION, I'm open to suggestions.  Because it's going to start growing back soon, and a girl has to think about these things!

:-D

It's been a rough week.  Side effects are really kicking in, then an ear infection and new antibiotics.  Just plain scary and weird to have your body in such a state...

But if you think this video of my little brother shaving his head in support is half as funny as I do, you'll get a good laugh, and we'll all get a little healing.  With positivity, laughter and LOVE.

Love you, Little Brother.

Enjoy!