brain cancer

Tuberous Disruptus

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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!

White Horse

Thankful

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Today, and every day, I am thankful.

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!

Thank you!

Gratitude and Laughter

Rainbows and Unicorns!

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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!)

Lemon Poppyseed Deliciousness!

Run, White Horse, Run!

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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.

 

Team White Horse Tee

Legacy

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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.

Painting Toward Grace

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I've written about my friend, fellow brain cancer survivor, and watercolor classmate, Michael Orchowski, in a previous post, but I'm going to do it again.  I want you to have an opportunity to participate in the remarkable journey of one of the most fascinating people I've ever met.  Are you reading this, Barbara Walters?

The Dream Foundation is collaborating with Cancer Center of Santa Barbara and 33 Jewels at El Paseo to present an exhibition of Michael's work, "Painting Toward Grace", on Thursday, December 1, 5-8pm, at 33 Jewels gallery in downtown Santa Barbara as part of 1st Thursday

From the event flyer:

"Michael's art is rich with imagery, with each of his paintings detailing his journey through and beyond illness.  Michael hopes that others will benefit from his experience, and enjoy this exhibition of his work...

"In the advanced stages of ALS, Michael's wish is to have an exhibition of his work "which would expose many others to my joie de vivre in spite of this strong infirmity." Paralyzed on his right side, and only able to use his non-dominant left hand, he strives to express himself in "joyful colors, with my right brain and my left hand.  The colors which I applied in the various paintings are happy and express my positive outlook towards life."

Nearly every painting Michael has painted in class will be on display and for sale, so there should be a lot of opportunities to obtain some one-of-a-kind holiday gifts!  Michael and his equally inspiring wife, Doedy, are generously donating the proceeds from the event to be divided equally between the Dream Foundation and the CCSB Wellness Programs, to increase awareness for both organizations.

Michael is a bright, shining light with an infectious smile, and an inspiration to everyone he meets.  But don't just take it from me - I've asked my classmates to contribute their thoughts on our friend Michael, too:

  • "What a pleasure it is being a painting comrade with Michael. He is an inspiration of love and hope and an artist to boot! His paintings exude joy and life filled with color and brush strokes that define his unique style, absolute "Michaelness". His art is a true expression of his life, his heart and his story, which is compelling and reaches out and touches the viewer. I'm glad that he found his brush." - Libby Whaley
  • "Michael is the kind of philosopher we need quoted in textbooks.  Upbeat, courageous, memorable, he smiles at himself and the capriciousness of life.  Michael has a droll sense of humor, and a gentle, loving and sensitive heart.  He’s a one-of-a-kind artist, and an inspiring member of our art class.  He’s a hero!" - Laurette Valentine
  • "Michael's art has always expressed to me his love of life in the face of challenges and pain. His good humor and whimsy belies strength founded in humility and kindness." - Michael Taylor
  • "When I first met Michael I felt an immediate bond with him. I know he felt it, too. It was only after my initial meeting and conversations with him that I was able to step back and appreciate his art. What a treat that was! He can somehow capture what is going on in his body with paint and paper in the most amazing way. His paintings are expressive, organic and extremely captivating. He is a remarkable person in many, many ways and an artist in the BEST sense. I am proud to know him." - Karen Westheimer
  • "I'm the girl that sat next to you most of the time at class. Your work there has been an authentic journey towards Heaven.  Your graceful attitude has inspired many a great deal. I looked forward for Mondays to come. I have enjoyed the comments, the interaction and the encouragement with you. I hope to see you at your coming exhibit. You leave behind you a work of love that I personally appreciate. Your presence will be real to me in my future work, and I hope will reflect what friendship and support can bring to a searching world for true goodness. Your positiveness gave me hope and then some.  Ma el salama, my dear friend......" - Natalie Khoury
  • "Watching Michael paint is an education in itself. Every brush stroke is loaded with meaning and is an integral part of the whole painting. In this way, each of us adds an integral part to the lives of those around us. Michael has shown us by example that, no matter what challenge arises, there is a way to express yourself and create beauty in your very own, wonderful style. Thank you, Michael, for blessing us with so many magical paintings--you can always tell an Orchowski!" - Tessa Flanagan
  • "Michael is our Archangel." - Rick Stich, Instructor
  • "The kindest blue eyes. Big blue and filled with love. His art is an extension of his love and the way he lives. Each piece is filled with bright colors, abstract, yes but his message is clear, live each moment in joy and hope. I love you Michael...you know that." - Charlene Hovey

Please join Michael's friends and help Michael fulfill his dream on this very special night.

  • Location: 33 JEWELS AT EL PASEO, 814 State Street, 805-957-9100
  • Date: Thursday, December 1, 2011
  • Time: 5:00 - 8:00pm
  • Bonus: Wine and refreshments will be served.

The Artist and His Wife

One Year Ago

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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!"  

"What is it?"

"My journal."

He smiled, "It's a good story, isn't it?"

I'd better keep writing to see how it ends.

Ready for Writing

Wellness At The Cancer Center Of Santa Barbara

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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. 

Thank you, thank you, thank you!

Michael O's Corgi Notecards

With A Little Help From My Friends

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Okay, I'll admit it.  In between thankfully longer and longer stretches of positivity, I still have plenty of bouts of uncertainty.  So I keep a log of some of the best advice I receive from so many of the amazing people in my life, and check in with it when I need a boost.  Here are some of the gems I've collected so far:

On getting back to life:
Don't BE the disease.  Get back to life.  Get back to living.
Got it.

On going back to work:
Don't worry about going back to work just yet.  You've still got 11 rounds of chemo, and I don't think you could work full-time until that's over.  Just concentrate on staying well.
Check.

On money:
You will always have what you need, when you need it.
Okay...

On stress:
Cut yourself some slack - we've had a really hard couple of years.
Right.
It'll get better.
Thanks, Dad.

On what to do next:
You've been blessed with the opportunity to figure out what you really want in life.  Take it!
Yessir!
Now's the time to learn something new.  Take some classes, maybe go back to school.
Doing it!
Maybe you should write a book.
Been thinking about that, actually...

On my horse career:
You've got this crazy ability to read horses.  Use it!
Working on it!
Why aren't you teaching riding lessons?  You need to be teaching riding lessons!
Yes ma'am!

On spirituality:
When you remember who you are, and I remember who I am, we remember: We are ONE.
YES!

On blogging:
You might run out of stuff to write about on that blog of yours.
Never!

Life After?

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I started this blog with the intention of sharing fun things that I was learning and doing, along with a little insight into "Life after Divorce" and my subsequent Relocation to California.  I wanted to send a message of hope to women going through similar circumstances, maybe wondering what do do next after such a Major Life Event.  Because maybe they had friends who chose the "other half" of the relationship, as I did.  Maybe they had family members who were confused and hurt after someone they considered to be a member of their family was suddenly extracted from their lives.  Maybe they were feeling guilty that despite all of their best intentions, they just couldn't make it work.  Or maybe they were the half of the couple left standing there, wondering, "Wait, what just happened?"  I wanted to reassure fellow divorced gals that they'd get through it and be happy again.  Because I was living proof of Life After Divorce.  Right?

Then, a couple of months into blogging, I suddenly had a lot more to write about.  A lot more to learn.  A lot more to share.  Suddenly, I needed reassuring that it was all going to be okay, that I would get through it, and be happy again.  I wondered, "What does Life After Brain Cancer feel like?"  I had already survived the Big D and Leaving Friends and Family in search of A New Start in California, so I was sure there must be life on the other side of a silly old brain tumor!  Right?

The last couple of years have certainly presented a series of hurdles, from further divorce drama to crappy cancer to the latest blow: bankruptcy.  Jeez, what's next, Universe?  When could I get on with it, already?

But I was starting to notice a trend: Stuff just keeps happening!  One obstacle after another, then another?  Get to "the other side" of one hurdle and there's something else waiting?  Wait a minute - that can't be right!  Could it?

So it struck me that maybe I had it backwards:  You don't get through Stuff to get to Life, but Stuff is what makes Life.  Maybe instead of looking at it as a series of hurdles to overcome, why not think of it as all just ONE CRAZY EXPERIENCE.  Sort of a winding, connect-the-dots path, leading me from one (sometimes BIG) experience to the next; ultimitely writing the story of my life, creating the ever-evolving, new-and-improved, latest version of ME.  Right!

So I hate to break it to everybody, but Stuff is part of Life, and Life, well, it just continues.  As people have begun to ask me, "How's Life After Cancer?" and "How does it feel to be Cancer-Free?", I get a little weirded out.  I mean, the "After" implies something is Over.  Done.  The End.  But Cancer is a chapter of the story of my life and the story continues.  It's a part of who I am, a dot on my winding path,  and will never be something that never happened.

Life after Divorce?  Life after Cancer?  Life after Bankruptcy?  There is always life after anything and everything.  Because as it turns out, it's all LIFE, and it's up to us to choose how to LIVE it.  I choose to live in humility, health, and HAPPINESS.  With a side of rainbows and a chocolate-covered cherry on top!

On A Path
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