It started almost three months ago, a surpise seizure after a long, stressful day of travel. It really knocked the metaphorical wind out of me. I hadn't had a seizure since 2011, and had weaned myself off anti-seizure meds in 2013.
In 2010 my doc told me, “you have a normal brain, only scar tissue remains,” after almost 18 months of treatment for what had originally been “a very large” brain tumor. Last December I celebrated 5 years cancer-free and have been fully absorbed in setting up White Horse Wellness Center, a nonprofit, public benefit corporation providing all the wellness therapies that helped me, to my friends with cancer.
Enter tuberous disruptus.
It was originally suggested that hormones during my cycle could be a trigger for the seizures, as I could be peri-menopausal, you know. A couple of MRIs and anti-seizure med dosage increases later, I now wholeheartedly agree with my doctors that the area in my brain previously known as scar tissue has been slowly changing/growing over the last few months and is the cause of the increased number of seizures I've been experiencing.
Turns out I'm not done putting the tuber in her place. She has started to rearrange the furniture in my brain as if she's going to be here for a while, but little does she know that I'm way ahead of her this time.
My oncologist says, “We beat it once before, and we can do it again.” Excellent.
I've met with a neurosurgeon who says, “Nope, surgery too risky and you have so many other options...” Whew.
A neuro-oncologist at UCLA says, “This is so exciting, they are doing so much research on brain tumors in your age group, and we'll find out if you qualify for a clinical trial. Otherwise, the chemo that you used during the first occurance was very effective, and that is still a really good option. Plus, the tumor is growing so slowly, that we have time to make the right decision for you.” Exciting? If you say so!
And lastly, my neurologist says, “I'm really not surprised you're back – these things have a tendency to recurr. The good news is, we know what worked and what to do and we can get started right away.” Yes! Loving the good news!
So, long story short, I started having seizures in February for the first time in almost 6 years. I began taking anti-seizure meds in March when the seizures became more frequent harder to control. And now, my docs and I are working on a plan to kick some brain tumor butt.
Oh, no you don't - I'm not giving up on my dream of helping others beat cancer through horses, art, movement, and nature, tuber or no tuber. Hi, ho White Horse, away!
Turns out that not having to take chemo every six weeks frees up a lot of your time and energy to do other things. It's been four years since my journey through cancer began, and I am beginning to feel as though I am finally to the other side. But it's not the place I started, in any way - it's brighter and much more open to possibilities. Each day is much less of "Here's what I have to do today", and more of, "I wonder what exciting things will present themselves today?" Some days, it's even, "Look what I'm creating today!"
This story illustrates my point best. Late last year, after having finished my chemo, I was feeling pretty lost - as miserable as taking poison to kill your cancer can be, it had been my routine, my job, for three and a half years. Then it was over - what now? I wasn't feeling well yet, but I didn't have the chemo to point to as an excuse for not getting on with life. As somebody who likes to feel useful, I helplessly watched our finances flatline, then bottom out right around Christmas - "the most wonderful time of the year". Holiday tunes, celebratory soirées and decking out our cabin in the woods did little to lift my spirits as we struggled with rent. I questioned whether my pre-chemo energy would return. And my little brain struggled to hold on to the lessons of cancer as real-world reality and all of its responsibilities returned. My spiritual studies were being pushed aside by fear, anxiety, and even a little envy as our bank accounts dried up.
So many things I wanted to do, but we needed money - fast! I could I sell my art, but I hardly had time or the creative juices to paint, much less find a place to hang them. I want to teach riding lessons, but no one is calling me for help with their horses. Maybe I have to get a job in an office, or making coffees, or waiting tables - I have hardly any experience with any of those things, but whatever I can to to contribute to our income...
In a last ditch effort to find work in horses, I went to a handful of Santa Barbara riding stables. Most of them were busy, but when I was able to speak with someone, "Sorry, we're not hiring instructors," was the most frequent response. That's okay - I'm not ready to get back into a show barn anyway. So I stopped in at the local therapeutic riding center, Hearts Therapeutic, Kirby at Hearts sat down with me for a few minutes and told me that their program only hires PATH certified instructors ($$$) and depends solely on volunteers for other jobs. She invited me to volunteer, because "there are a lot of folks from the local horse community who volunteer, and you might make some connections."
Volunteer? But I need to make money! True, but I might die of equine-deficiency disease in the meantime, rent money or not! I NEED horse time, so what's a horse girl without a horse (or lesson money) to do? So back to Hearts I went for Volunteer Orientation and Training. And I remembered - horses, learning, helping people - this is what feeds my soul! These are the reasons I was put on this planet, and I'm back at it!
And you know what? Two weeks later, I was already having the time of my life, learning lots of new things, meeting lots of new friends, and yes, making lots of connections, when Kirby pulled me into her office.
"I hear you're looking for a job," she said with a smile.
There is a reason that Benjamin Franklin stated that he though the Wild Turkey "was a much more respectable bird" than the bald eagle with respect for it being chosen as the symbol of America.
They are quite beautiful in so many ways - some of my favorite photography subjects are the wild turkeys that roam our neighborhood. Goodness knows we get plenty of opportunity to watch and digitally capture their activities where we live.
When we first moved into our little cabin in the woods four and a half years ago, we quickly discovered that the turkeys were hardly wildlife, but actually fellow residents. They spent quite a few nights on the roof of our house when we first moved in. We found them fascinating from the start, and watch for "Our Turkeys" on their route through our yard and around the neighborhood every day, so they are good friends these days, even if they can be maddeningly destructive to the plants we spend a lot of effort growing!
Despite their reputation for not being the brightest of birds, turkeys are actually quite intelligent and have a very complex social structure. They look out for one other, especially their young, and I once witnessed a group of turkeys mourning over a family member after she'd been struck by a car on Paradise Road near my house. The whole family stood vigil over her, despite cars on the road. I honked and waited for them to get out of the road, hoping they would stay safely out of traffic and out of the road. It was heartbreaking to see how hard it was for them to leave their friend.
I giddily look forward to seeing the chicks every spring, and it's really an honor to see the hens that we hang out with all year, raising their little ones, sharing their family moments with us. I imagine looking into the beautiful, doting eyes of a turkey mama watching over her poults is not very different than looking into the eyes of any mother, human or other wise. We've been privy to watch them napping in our yard, hens shielding the chicks with their wings, mamas teaching the young ones to fly when they're ready, then watching the young ones grow into teenagers and mature adults. We once had the opportunity to save a group of stranded babies after they got stuck in our planter box a couple of years ago. What an experience!
The antics of our Toms are fantastic comic relief, especially during breeding season. Even when you can't see them, you can hear their gobbling for hours on end as they fight for their places in the gaggle. We've observed them strut back and forth in front of a shiny car for hours, unsure whether they're practicing, aware that they're seeing themselves or if they're just merely confused, and thus offended by their own reflections. We've been witness to parading gobblers shaking and vibrating like feather-covered exotic dancers. The first time I saw a pair of Toms tussle, in a chest-butting, wings flapping, feathers flying display of manliness, I worriedly wondered if the would actually kill each other over a girl. I stood in the window wringing my hands as they circled the yard, grabbing each other by that wrinkly flap of skin over their beaks (appropriately called a snood) and pulling for all their worth. How they could squawk and hold on, I couldn't fathom, but I was pleasantly surprised that, as delicate as it the snood might appear, it didn't come off when pulled to what seemed like far beyond the limit during a hearty wrestling match. Every bird survived his battle, but I suppose there was some hierarchy established as a result. There were some sore snoods and weary wattles to follow, I'm sure. Ouch!
Our group of turkey friends has evolved since our first year here in so many ways. They no longer sleep on our roof at night, but go uphill and roost in the trees. We often time our evening walks with "Turkey Launch Time", when they all take to the trees, one at a time, by running downhill first, then leaping into the tree branches in the creek below. Although they are nearly impossible to tell apart, we do miss "Gimpy", "Consuela" the adopted peahen, and "Mr. Big Tom" (with only 3 tail feathers) from the first couple of years we lived in our little cabin. This year's group is bigger than ever, with 6 toms and almost 15 hens. And as grumpy as it makes me when they thrash the plants on my deck, I try not to scare "Miss Limpy" too much when shooing our friends away from the vegetable garden.
Our flock of feathered friends provides a steady stream of live entertainment, like our own custom Turkey Learning Channel. And I love those Birkey Turds.
I am thankful for a supportive, loving, and kind life partner/boyfriend/best friend. We've been through a lot in almost five years together, and I am grateful to have him by my side through storms, rainbows, and sunshine. Love you, Eric.
I am thankful for family, both my own loving and generous family and my wonderful Boyfriend's family. I miss them all and can't wait to see them again for a big hug! I love you! Thank you.
I am thankful for all my friends, both local and too far away. I am so grateful for the love I receive from all of you, and I'm so lucky to count some really amazing, wonderful people as dear friends. Thank you.
I am thankful for the fabulous, peaceful place in which we live. I am grateful for the beauty that surrounds us, whether it be breathtaking views, the wildlife that brings us so much joy, sun shining in my window, or the spider's masterpiece that is recreated every day over my kitchen sink. I am so blessed to learn and grow among supportive teachers and friends in art, yoga, tai chi, healing touch, horses, and well, LIFE.
Especially thankful this year for the gift of health and the freedom from cancer!
As in, Rainbows and Unicorns, the day has arrived! It is my last day of my last week of chemo! It's been a loong three years, but it's finally over.
I can hardly believe it. Especially since my body's not quite aware of a reason to celebrate just yet. As special as this day is in my head and heart, as much as I feel like I've crossed some sort of finish line or reached the other side of some gianormous obstacle, it was just another typically yucky week of chemo for my poor tummy. She doesn't know that last night's little white pill of digestive unhappiness (who we love for taking care of that Terrible Tuber of Brain-Unhappiness!) was the LAST ONE. EVER!
So once we recover, you can bet we'll be ready to PARTY! With Rainbows and Unicorns and CAKE! The question is, who's going to bring the CAKE? (Lemon Poppyseed is my current favorite!)
I posted this the day before Election Day, but who knew I needed to wait until after the election to come across this magnificent graphic to complement it?
I usually don't do things like this, so, deep breath...
It's almost Election Day, and if it's not too late, or if you haven't yet decided, I have some thoughts for you. Our Presidential race is a close one. It is an important one. Especially to somebody like me, and here's why I'm voting for Barack Obama.
If Mitt Romney is elected and actually does some of the things he says he will, people like me will lose our much-needed Social Security or Disability benefits. People with cancer or any other pre-existing conditions, like myself, may not be able to get affordable insurance. Many of our parents' retirement dreams could be shattered. The list goes on, and you all know someone who could be detrimentally affected by Mitt Romney's bold statements about the 47%. I'm in that 47%, and I don't know what I'll do if our government decides to pull the rug out from under government services that I've paid into, and currently depend on, all because some rich, heartless, powertripping Republican says he'll "never convince them they should take personal responsibility and care for their lives."
Please consider how your vote effects the country as a whole, including your friends and families. It's really important.
But it's not over, just because the guy I voted for is still going to serve as our President for four more years. A lot of people are very upset that their guy didn't win, and I have some thoughts on that, too.
Enough is enough with all this US vs. THEM nitter-natter! WE didn't WIN, and THEY didn't LOSE. We're all Americans, and Barack Obama is our great country's President. That is an undisputable fact, whether you like it or not.
So - what's better for our country, our economy, our families, and the entire world, for that matter?
Continue all the polarizing, partisan bickering, which only serves to make America less functional, not to mention that our behavior resembles that of pouty schoolchildren? Or how about we work together, like the adults and proud Americans we are, and get behind the guy who's trying to help us?
(He does ride a Unicorn and shoot rainbows out his wrists - how bad can he be?)
*I can't take credit for the image, if you know who deserves it, please let me know!
I shop at the Trader Joe's on De la Vina in Santa Barbara, partly because it's on my way to the Cancer Center, so I drive by almost every time I'm in town, never mind that it has every thing I need to a real one-stop shop for all of my "Let food be thy medicine" needs.
Little-Known Girlbert Factoid: I like to play a game when I'm shopping in which I offer everyone I come upon a big, happy grin. It feels great to get a smile back, and I always hope I can brighten a fellow shopper's day, but it's still gets me a giggle when they look at me as if thinking, "What the heck is that goon so happy about?" You never know who really needs a smile, and they're so easy to give away! I don't count smiles vs. funny looks, but I like to think that everybody wins.
Now that I've been playing the Smile Game at Trader Joe's for a few years now, I've made friends with many of the employees (some of whom read this blog!), and several of them know that I use food (from their aisles!) and happiness as "medicine" to overcome cancer and stay healthy. Most of them have asked me why I'm so happy, and I tell them, "I'm shopping for yummy food at my favorite store - everyone here is so happy, and there's free coffee and snacks!"
So now that I'm a regular, many of the employees are friends I look forward to seeing, and my weekly grocery errand is more of a social event than a drudgerous task.
So when I went to grab a week's worth of sustenance at my favorite grocery store on Saturday, I got to see all of my friends, and when they asked me how I was, I got to tell them, "I only have TWO days of chemo left!" Several hugs, high-fives, and thumbs-up later, I was on a big fluffy cloud of happy. By the time I got through check-out with my cart full of yummies, my smile threatening to burst from my face, my friend Loren met me at the door with a bouquet of flowers! Who knew a smile could bring so much love, or that there would be flowers at the end?
Five stars, Trader Joe's! The proof is in your people!
Okay, so I'm only going to walk, but Boyfriend and I are raising money with some friends as Team White Horse for the Cancer Center of Santa Barbara's 20th Anniversary Walk/Run Fundraiser on October 14, 2012. All the donations for this event go directly to the Cancer Center's Clinical Research Programs. In other words, directly to help develop new cancer treatments, just like the one that saved my life.
We're doing this because it's what we can do to support an organization that supported us when I needed it most. When I first needed treatment, they gave it with no questions asked long before I was awarded Medi-Cal.
I'm also nearing the very last of 24 rounds of chemo so it's a big thing for us. The Cancer Center's goal for this fundraiser is only $200,000, which is not much when you consider that today's best treatments are developed in clinics like CCSB. As most of you know, radiation and chemo obliterated my tumor, but it's not like that for everyone. While it sounds funny to say this, we feel a large part of my success was because of the positive attitude everyone at the Cancer Center has. For us, that has as much to do with treating cancer as anything else, which is why we're asking for your help to support them.
The people of CCSB go above and beyond to treat everyone with the very best care possible and our support means they can continue to help develop better and less risky treatments. They're a not-for-profit, so your donation will be tax-deductible.
I will be walking with a group of friends as "Team White Horse". Our goal is to raise $3500 for the Cancer Center; my personal goal is $500. You can submit your pledge directly to Team White Horse on the Cancer Center website. Click on the link "Support" at the bottom of our team's page and make sure you fill in the "participant" section with my name.
If you're more comfortable sending a check, make it out to Cancer Center of Santa Barbara and contact me as soon as possible for a mailing address, so I can turn in all the checks together on October 14th.
Please submit what you can, because every little bit helps people like me when they need it the most. Of course, feel free to pass the word along if you know anyone else who would want to help.
Show your support with a Team White Horse t-shirt! We have a limited number of shirts available - for every $20 shirt you purchase, $10 goes to the Cancer Center. Please email me for details.
It was your last day on the planet, and you knew it. What did you want to do? Eat, obviously. Carrot puree, coming right up. Did you say applesauce? Got it. Chew some grass, spit it on someone's foot. Of course. But did I know that you wanted to run away one last time? Probably. That must have been why I put the lead rope down, just for one second. One picture, and you were gone. Oops.
Maybe you wanted to make me look silly one last time, but I didn't care. Because I didn't mind watching you run off, shiny, white tail over your back, mane flying and green grass under your hooves. Down the hill, around the front of the barn, just so everybody could see what you did. It's how I wanted to remember you - reminding me that even on the last day, you still had one more trick up your sleeve. You were still the teacher, and I wasn't through learning the lessons you have to teach.
One last lesson from the great teacher. A reminder that we're not through, not yet. A timely kick in the pants: Pay attention. You have more to learn. And you learn best by teaching. So, "Trot! Kick! Go! Now!" And don't forget to have fun!