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!
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.
Today, I am happy. Today, I am grateful. I am grateful to cancer for showing me my own reality. I am grateful for the Cancer Center for allowing me to uncover and discover myself, my gifts, and my happiness.
I am grateful for my family, my friends, my Love, and even my enemies, if there are such things. I am grateful for everyone I've ever encountered, for they are all my teachers, and today, I remember that.
Today, I am happy. I have been dusted off, rinsed clean, and toweled dry. I am clear; the world is sparkling and shiny, and there is so much to enjoy! I am grateful for the ability to realize that everything I see is mine to enjoy.
The world is beautiful! So much to appreciate - all the different greens in the trees, all the shades of gold in the grasses, and all the colors in the flowers! Have you seen how blue the sky is today? Do you know how amazing it is that the sun is shining on the mountains, but the clouds are keeping the lowlands cool and damp?
Today, I am happy. I have a new appreciation for conflict, because without it there is nothing to learn, nowhere to grow. I am grateful for growth, I am grateful for everything there is to learn. I realize I know nothing, everything is NEW.
Preface: I said goodbye to my dear, 29-year old Saddlebred lesson horse, Stevie, last week. I'd known him for over half of his life - I met him at William Woods University in 1996, where I was a student and he was a donated lesson horse.
My dear, brave, sweet Stevie,
It's hard to imagine how reluctant I was to buy you, considering that we've had twelve years together. I still remember the first time I rode you my first semester at William Woods - it was one of the most embarrassing moments of my life, and it happened right in front of world-famous riding instructor Gayle Lampe! We had to canter a figure-eight, my saddle slid sideways, you went hopping around, sporting a trimmed mane and nothing to grab onto, and you weren't interested in helping me one bit! You never did have much interest in figure work - you were a Champion Three Gaited Saddlebred with a mission to take those victory passes on your own terms, often leaving your young riders in the dirt as you trotted out of the ring with your blue ribbon!
You taught me a very important lesson that day - I had a lot to learn and I didn't ever want to ride you again! Your constant antics in the stall, your hunger strikes, your epic victory passes, your habit of eating students - you were a perpetual source of disruption in the William Woods barn, at the horse shows, and in the classroom as we learned that there are exceptions to every rule. Especially with Stevie.
So when Gayle Lampe called me the year after I graduated to ask me if I needed a lesson horse, because you were for sale, I told here that I was not interested in a lesson horse that eats students and bucks people off at horse shows. And she replied, "He doesn't do that anymore - he's older and more mellow now." Or something like that. But I was not a fan of the Getting Even Steven, so I told her, "No, thank you."
But a month later you were for sale again. The phone call went something like this: "Lisa, it's Megan, from William Woods - I bought Stevie, but I need to sell him because I'm taking a job that won't let me have a horse, and Ms. Lampe said you might want to buy him."
Sigh. Who was I to argue with Gayle Lampe? At least not twice, anyway! So I sent Megan a check and she put you on a trailer from Ames, Iowa to Oshkosh, WI.
By the time you stepped off the trailer in Oshkosh, you had taken all of your shoes off and ripped your tail out. You didn't have a mane the last time I'd seen you and it had grown in nicely - on the wrong (left) side. I don't really know what I was expecting.
But hey - I'm a lefty, too, so maybe we had more in common that I'd thought!
I quickly learned that mellow wasn't your style. But I admired your spirit, and thought I could teach you a thing or two, and we'd figure out how to teach lessons together. Ha! Turns out I was the one that had some stuff to learn, didn't I?
You were far more patient with me than I was with you. After all I was just a dumb kid and you already knew EVERYTHING, right? By the end of our first summer together half of my students hated you, and the other half were kind of afraid of you. But I was merely annoyed with you, and didn't figure I could convince anybody to buy you, anyway. So off to Colorado we went...
Where I quickly learned that you already had quite a reputation. When I proudly told the trainer I was going to work for in Denver that I was bringing a horse named Getting Even Steven, she startlingly exclaimed, "You can't bring that horse here! He's completely crazy! I've seen him try to kill people!" Whilst wrapping my head around the fact that you'd already made a name for yourself as an outlaw in the horse community to which I was scheduled to move the following week, I explained, "He doesn't do that any more - he's older and more mellow now." Whoa, channeling Gayle Lampe!
Many students and blue ribbons later, including Arizona State Pleasure Driving Champion, you were a local superstar, and turned that ugly old reputation for being naughty (mostly) on its head! In the eight years we taught lessons together, I had about as many people offer to buy you as ask me, "Is that old horse really worth all the trouble?" "No, he's not for sale," and "Yes, he most certainly is worth it!"
Our adventures were never boring - you had a way of taking any sure thing and adding a Stevie Twist, usually in the final moment! There was a surprise outcome to everything you did - you made me think on my feet! You were still teaching me how to train, teach, trust, and love while giving many young students the ride of a lifetime. You taught me a lot about hard work, determination, and courage. And that you don't do trail rides.
You were the original Energizer Pony - when the going got tough you never, ever quit. You had more try, more heart, and more soul than any horse I've ever known. You were also the sportiest, most athletic horse I've ever known, and I'm including your trail riding gymnastics and carrot-trick yoga games with all of those enthusiastic victory passes. And yours was certainly the proudest blue ribbon I ever received - Open English Pleasure Champion - when you were 20 years old!
I know now that you put up with all the beginner students, summer campers, and Halloween costumes because you liked hanging out with me. I was your mom, your cheerleader, friend, and your human counterpart. And if you behaved, you got to go to horse shows, where everyone could admire you as you trotted out of the arena with another blue ribbon. I remember watching you size up the competition before your classes - you really did know everything, didn't you?
Neither of us handled your retirement very well. Pasture life clearly was not up your alley, but you eventually learned to live outside in a "private" run - it was easier to torment your neighbors when you could actually reach them, anyway! The first time I caught you picking up your rubber feed pan to wallop the horse next to you, I couldn't help but belly-laugh, you were very seriously hilarious in your distate for horses not quite up to "Stevie standards". Which includes most every horse you've ever met. Especially geldings. And horses with spots.
I could write forever about my spunky little white-faced horse and our adventures, but I'm afraid any attempt to summarize your life, a life lived so powerfully, so purposefully, and so profoundly could only fall painfully short of describing the once-in-a-lifetime, larger-than-life, rockstar- superhorse-companion-partner-teacher-healer-and-friend that you were to me. So I'll stop here for now, but I'll write more later, because there's just so, so much more. I am honored to have had the privilege of sharing almost half of your life with you. Thank you for reminding me to laugh at myself, live with relish, love hard, and be myself, no matter what anyone else says or does.
Those of you who visit Girlbert regularly know that I'm an amateur photographer, a website designer, and now a watercolor student. And a lot of what you see on my site is focused in nature: birds, animals, flowers, and the local landscape. My creations are a reflection of my world, my life, the things I love. I photograph, pictify, and paint in an attempt to share the things I love with others.
"Follow your bliss." ~ Joseph Campbell
Since seeing "Finding Joe", a movie about the theories of writer and mythologist Joseph Campbell, I've been trying to do just that. One of my passions is expressing myself creatively, whether it's painting a picture, taking photos, rearranging the furniture, or just making sure dinner looks as good as it tastes! Thanks to cancer, I've been able to dabble in watercolors, learn more about photography, and mingle with some very encouraging artists and new friends at the Cancer Center of Santa Barbara. All this creating is making me happy, and Happiness is probably a road sign somewhere on the path to Bliss...
So I'm double-happy, because I have a creative outlet, it's proving to be a lucrative effort, and now it's giving me a way to give back to the organization that started it all: Cancer Center of Santa Barbara. If it weren't for the classes I've taken, the encouragement I've received, and the connections I've made through CCSB, I wouldn't be nearly as far down the road to following my bliss as I've found myself lately. There's no turning back, either, because I find the path ahead lined with as many opportunities as oak trees and wildflowers!
The following poem was written and read aloud by my friend and fellow painting classmate, Libby Whaley, at the Cancer Center of Santa Barbara's "Art Heals" reception and art show on Friday night.
A twist of fate brought you to our door. Welcomed, you came in and found a new family. The teacher guided you with a message, “You can paint whatever you want.” And with that, you picked up a brush and your creative legacy was born.
You didn’t know. You had not been to this place, this space, this moment in time. And although your brain was under attack by errant cells, your brush grew wings and the colors of the paint danced upon your canvas.
Emotions caught within the tides of your life began to flow. A wave washed over all of us. We took notice of the compelling stories unfolding before us. The colors of an emboldened life were set free to be, to share love, to inspire, and live outside the lines.
As we painted our still life flowers, we watched the evolving of an artist, unknown even to himself. Your brushstrokes unveiled a personal style expressing joy and movement, a happy heart danced. And our hearts danced with you.
Although you could not outrun your fatal conclusion, you knew just what to do. You wrapped up your life and legacy with a beautiful Art Exhibit, entitled, “Painting Toward Grace.” How uncanny, as we had been privy to observe your life already so full of grace.
Thank you Michael, for gracing us with your presence, for inspiring us, for sharing your love and hugs. In awe, we have watched you. And now you have left us, but not without leaving the essence of your spirit. It shall live on within the joie de vivre of your paintings. We are smiling with you now.
I met Michael Orchowski and his wife, Doedy, at a brain cancer support group at CCSB in 2009. I was touched by their story of strength and love, and encouraged by Michael's triumph over brain cancer and paralysis. But it was the Cancer Center's wonderful wellness offering, "Painting the Pictures of Health", where I really got to become friends with Michael and Doedy and the rest of our art class "family".
We lost our brother and Archangel Michael on Friday, November 25, just a week before his dying wish, an exhibition of his work, "which would expose many others to my joie de vivre in spite of this strong infirmity," was to open.
Michael's dream was realized on Thursday, and despite his physical absence, his spirit was undeniably present as people made their way through 33 Jewels Gallery, usually shoulder to shoulder, to view his lively paintings of positivity and hope. The energy was that of celebration and admiration. Michael would have been smiling with joy.
"Painting Toward Grace" was a fitting tribute to a man who inspired hope and healing in so many, myself included. I never doubted that Michael was a great man who had inspired many people or that he had a large circle of friends, but I was happily surprised at the turnout on Thursday. I knew Michael in the context of our art class, but as I made my way through the tightly packed crowd at 33 Jewels Gallery, listening to friends and admirers share stories and marvel at his paintings, I realized that our art group is just one of Michael's many families.
At right is a video of Michael describing some of his art and his process of painting through illness, taken by CCSB's Lisa Hashbarger. I'll let Michael take it from here:
"I fill my soul with love. The soul is much more encompassing than the mind, the mind is only a tool of the soul."
"This is how I want to finish my life - not in a bitter fashion, but in an uplifted fashion."
"This is what I want to acheive - the expression of the wish to live, and not giving in to complaints and doing things about the situation that we cannot change."
"It's difficult, but I'm not alone."
We'll all miss you, Michael. Thank you for leaving us with so much.
A couple of years ago, I started carrying a notebook with me everywhere I went. I mean everywhere - doctor's appointments, grocery stores, to the kitchen for every meal, next to my computer, next to my bed at night. In my purse or in my hand in between. If I could have a holster made for it, I would. It started out as a necessity - all of the medicine made me forgetful, so I'd make lists. And lists and lists...I wrote down everything, there for a while, because I could remember anything without it!
Then it was a way of keeping myself sane, writing down thoughts and feelings to get them out of my head, so they'd stop spinning around in there and driving me nuts. I suppose that's sort of a necessity, too. Then it just became a habit to have it with me, and I'd get sort of lost without it. I'd panic when I couldn't find it, tearing the house apart, only to discover that I had just left it in my bag by the front door!
I write something in it every day to keep track of things: ups and downs, highs and lows. I tell people this all the time - write something in a journal every day, to keep a record of where you're at, whether battling cancer, or just life in general. I may not feeling like writing an elaborate account of each day, but I make myself write a sentence or two in my notebook every night before I turn out the light. My bedtime ritual has turned thoughts into stories and sentences into a record of events in my personal journey.
As I finished my journal entry last night, I realized I was at the last page. I had no idea when I'd started, so I flipped to the front, and whoa: November 3, 2010. A year's worth of journaling in one book, how cool is that? What was I doing a year ago, anyway?
I started reading and ah, yes, the crying. Lots of crying. I was pre-bankruptcy and the phone was ringing off the hook with angry creditors. Boyfriend and I still had no income or work and bills needed to be paid. How much longer would our landlord put up with us? Not to mention I still had a good sized brain-tumor. I had scribbled on one of the pages, "When was all this positive thinking going to kick in and turn things around?"
Then December came and things started to break loose. My December 2nd MRI was a pretty sweet Christmas gift. A few weeks later we finally got the web contract we'd been vying for for over a year. We caught up on our rent. We paid our bills. Then Christmas and the silly stresses that tend to go with it. I was happy and grateful that I could afford gifts and cards for those I loved, but didn't realize I wasn't up for the full-time "job" that the holidays really are and I was still exhausted two weeks a month with chemo! Hmmm... something to do better this year...
I kept going, so many ideas, stories, and lessons I may not have remembered without my little spiral-bound companion and trustworthy mechanical pencil!
When Boyfriend came to bed, I was still riveted. "This is the best book I've ever read!"
Cancer's a weird thing. For all the pain and distress it brings, I've found that it can bring equal amounts of opportunity, hope, and enlightenment for everyone affected. The avenue to health through cancer can be eye-openingly positive with the right kind of support. And my Yellow-Brick Road to this conclusion went directly through the front doors at the Cancer Center of Santa Barbara. As I've told so many people, "Santa Barbara is the place to have cancer, if you must, because of the Cancer Center."
The staff and doctors at CCSB took me in for treatment before I was qualified for any financial assistance, because I needed treatment "now, not whenever the state figures out that you qualify." The caring staff felt like a family by the end of my seven weeks of radiation. I was actually sad it was over, because I wouldn't get see them every day!
In addition to offering outstanding medical care, cutting-edge technology, and an ultra-caring staff; CCSB provides a vast array of classes, therapies, and counseling - all free of charge to patients through their CCSB Wellness Programs. I've been taking watercolor and yoga classes, receiving Healing Touch Therapy, and attending support groups at the CCSB Wellness Center for almost a year now. Their Wellness Programs perfectly complement the outstanding medical care provided by top-notch physicans with opportunities to heal mind and spirit while the physical body battles cancer. I can't say enough to express my gratitude for CCSB's emphasis on healing the Whole Person through Whole Wellness.
Through my activities at CCSB I'm learning new skills, keeping myself sane and happy, getting the help and support I need, and meeting lots of interesting new friends. There are a lot of amazing people with whom I may have never come into contact if it weren't for the common thread of cancer and the CCSB. I've met so many people through the CCSB's Wellness Programs: fellow cancer survivors and warriors, amazing staff, volunteers, teachers, and family members of my cancer peers.
One of my new friends is a fellow brain cancer survivor and watercolor student, Michael Orchowski. He is an inspiration: a bright, shining light to everyone he meets, and I'm super-lucky to get to spend time with him every Monday in art class.
Here's his remarkable story: Following brain cancer surgery, Michael embraced painting classes offered by the Cancer Center of Santa Barbara. Losing strength and control on his right arm and hand, Michael learned to be left-handed. Inspired by his beloved Corgi dog, he began using his left hand to paint particular images and colors without making conscious decisions of what he was painting. Michael's cancer is no longer active thanks to the skills of surgeons and the wonderful medical and spiritual support of many medical staff, friends and family and the Cancer Center of Santa Barbara.
Michael donates most of his paintings to CCSB, and they've taken five of his doggie paintings and printed them on notecards to sell in 5-card assortment packs for $10 (All 5 cheerful images, shown above, right!). I've bought a pack, my parents have bought a pack, and I'm suggesting that if you like these cards, you do, too. Your purchase will help a tremendous organization continue to help people like me, when they need it the most. The cards will brighten the day of whoever receives them. Just like the smile of my friend Michael brightens everybody's day and lights up every room he enters.
Your $10 donation is tax-deductible and (much-needed) proceeds will be donated to the valuable Wellness Programs at the Cancer Center of Santa Barbara. To learn more, please email the Wellness Center Coordinator, or call (805) 898-2204. Please tell them that Lisa Tomlin sent you.