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!
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!
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.
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!
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!
The last couple of weeks have been tough. Busy, busy, busy - like a hamster on a wheel. Going nowhere - really fast. Working all the time, feeling like I'll never catch up, and it was really getting me down. Last month I got this tremendously great news about my health, but I've been catching myself in the throes of negativity more often than I'd like to admit. I was certainly off-track of my normally positive outlook. How do you practice what you preach, Girlbert? The answer wasn't coming as quickly as I would have liked, so I wrote this little reminder for myself. Maybe it'll be helpful for some of you, too.
Here some of the tricks I use to stay on track in the practice of a happy, healthy life:
I meditate. Every day - even if it's just for a few minutes. I try to stop and focus on my breathing: Inhale...Exhale. So simple, and does wonders for my stress level!
I journal. I never know when I'll need to jot something down, so I keep a small notebook with me. I tell people that good or bad, it's better to get it out of your head and on paper than let it take over your mind. Then you can look at it on page and determine if it's worth more of your energy.
I stop what I'm doing when I'm hungry and make food for myself. I make a point to consciously feed my body healthy food.
I get outside and enjoy nature. I appreciate all of the earth's creatures and taking the time to admire them renews my sense of wonder and humility.
Find the humor and laugh! There's something funny in every situation (I promise!), and if you can do that, you'll get through anything.
I cry if I need to, then pick myself up and move on. But most importantly, don't bottle it up - let it OUT! It's okay to be angry/sad/whatever, as long as you address it and move on.
I make time for the things I love to do. It's important to have a hobby or creative outlet. I started taking a watercolor class through the Cancer Center this fall, and I'm having a blast learning how to paint! Learning something new is so good for your mind, and being an art student reminds me that we're all students in the lesson that is life! I've also recently begun to take more time for my horse and my horse friends and that's been good for my spirit and to reconnect with the horse girl inside me. Reminds me that I'm still a horse girl, just waiting to get back in the saddle.
I exercise. Okay, not every day, but I try to do something to get my blood pumping at least every other day. Then I yoga or do some pilates at home on days in between. I admit I'm not a big fan of exercising for exercising's sake, but I've seen the results of with vs. without: My blood counts (taken every week) are more stable, my mood is better, and I definitely have more energy with exercise. (Don't they have some research to prove that, somewhere, too?) Not to mention I look better with a little muscle on, and who doesn't like to look good? A shaman once told me, "if you look good, you feel good."
And I have to give credit to so many healers, friends (animals, too!), shamans, energy workers, family members, doctors, holistic practitioners, and some people I've never even met; for inspiring me to be better, learn more, and HEAL. So put yourself out there - you never know who you'll meet, what you'll learn, or what you'll get back. Know that your energy, love, and support will be returned, times ten!
Okay, I admit it. Yesterday, I was way depressed. The calendar had turned over into October, and I realized: 2010 is three-quarters over. I must write something - I only have three months to catch up on most of a year of not writing as much as I'd wanted all year! How's that for a glass-half-empty kinda 'tude?
Panicked over the thought of providing my readers with another month of not much, I'd cleared my schedule with the intention to write. And not just anything, but something INSPIRED. Something GREAT. SOMETHING TO WRITE HOME ABOUT! I'd finally made the time, and... nothing. At. All. Just staring at a blank, white text box on my super-deluxe-widescreen. Blink, blink. Struggling to flow was having exactly the opposite effect. As it always does. I was left with no choice, but to abandon the effort. Start fresh tomorrow, Girlbert.
This morning I was determined not to let it happen again. No expectations, combined with some good music, and a couple of cups of COFFEE, have my fingers dancing around the keyboard like a gay chorus line! Yay for COFFEE! And TALKING HEADS! HAPPY OCTOBER, EVERYBODY!
Sorry - I'll reel it in a notch...
So, October really is my favorite month of the year, and I want to sincerely welcome everyone to the month in which Girlbert was put onto this earth, 34 years ago. And I want to make sure that those who are interested realize how grateful I am to have enjoyed another year on this planet, even while feeling as though the battle was uphill some most of the way. I guess if the earth were flat, my calves wouldn't be nearly as defined, would they?
But back to my point - freaking out about not being inspired to write whilst feeling obligated to provide content is really not the point of this website, now is it? I was reminded of this earlier this week, when a friend emailed me to tell me how inspiring I am. I wrote back to tell her thank you, but I certainly wasn't feeling very inspired at the moment. She replied: "I know, I get the same way, too - but we shouldn't write unless we're feeling it." Ding ding! This website won't inspire anyone, unless the writer is inspired.
Which reminds me of something I read earlier this year: "Are you a human being, or a human doing?" Most people DO spend their time DOING things: rushing from place to place, checking things off their all-important "To-DO" List. When the point of life is to BE. Be in the moment. Be present. Just BE.
Ah, so, do I practice what I preach? Nearly never. Especially now that I have the ability, finally, to DO. With the reinstatement of my driver's license, in particular, I can actually get myself places and DO things.
So this week of frustration and self-imposed anxiety brought with it the realization that I really need to get back to BEING. Straight away! Chop-chop! I mean, Om...
I'd like to promise that I'll be posting more often, now that I've been reminded the importance of doing what I love, which is writing, creating, and being. But I can't, because despite the fact that I know how important it is to BE, I still have much to DO. As the work week begins, I'll be hitting the ground running with many items on the Girlbert Schedule: blood tests, an MRI (Tuesday, positive vibes are being accepted now!), an appointment with my oncologist to discuss aforementioned MRI, prescriptions to be called in, prescriptions to be picked up, and bills to pay (with what, I don't know).
But I'm going to make a greater effort to BE present, as I fit in some fun stuff, too: free painting and yoga classes at the Cancer Center, breakfast with my cancer girlfriends, biking with Boyfriend, and some hang-time with my horse.
It's still Sunday - plenty of time left to BE today. I think I'll brush up on the Art of Doing Nothing.
READERS: Please share your struggles with, or tips for, BE-ing in the comments. Any stories about being present or advice you have for those who can't stop 'doing', would be so greatly appreciated. I could use all the help I can get, and couldn't we all! Thank you in advance.
I usually have a large salad as one of my main meals each day. Sometimes it's in a bowl, sometimes it's in a tortilla, but the idea is that it's mostly green, fresh and raw.
It's part of the Girlbert's Pursuit of Ultimate Health with Minimal Effort Plan.
Summer (record-setting!) heat, having to handwash every dish I use, Boyfriend's preoccupation with Things Concerning How We Pay Our Rent, and my continuing monthly chemo regimen have me pretty well convinced that cooking or juicing three squares a day just isn't in the cards for us. So, one big bowl, a multitude of delicious, raw ingredients, maybe a knife and a cutting board - totally do-able!
And why not pass on a little of what I've learned from my Summer of Salad-Making, to you? Let's face it - most of us don't eat enough salad. We know it, but it seems an impossible hurdle, considering how programmed we are to cook every meal.
Instead of looking at it as, "I have to make a salad to go with dinner," why not look at it as, "what should I put with the salad we're having for dinner?" Make the salad the centerpiece - give it a little weight with some grains or beans, spruce it up with some colorful veggies or fruit, and suddenly it's a meal. And when done right, it's plenty filling, but doesn't keep you up all night with your body straining to digest a heavy meal.
So - get creative!
First, stock up on salad fixins you like, or would like to try. I try not to do the same thing too many times in a row, if ever, to keep myself from getting bored. I just pick up lots of salad greens (I love mixing arugula into my salads) and veggies when I do my grocery shopping and keep lots of things in my fridge to choose from.
And I've gotten over thinking that I have to cut up a million different kinds of vegetables: carrots, tomatoes, cucumbers, bell peppers, radishes, onions, etc, for every salad. That's way too overwhelming! The point is, lots of greens for the fiber and vitamins; and a couple of veggies for color, flavor, and interest. And a fun way to mix in veggies without having to chop, peel, worry about the size, etc? Shred veggies like carrots, peppers, cucumbers, radishes and zucchini with a cheese grater!
Go easy on the dressing - just lightly toss the greens and veggies to coat before adding additional ingredients. I usually stick with a tablespoon each of olive oil and balsamic vinegar, for every two people or three to four cups of greens. Lemon or lime juice is a nice raw substitute for the vinegar. And use sesame oil (topped with sesame seeds) for an Asian flair.
To make it a meal with enough weight to satisfy, I add quinoa or rice, and beans like garbanzos, black, kidney, or Great Northern (white) or edamamae. Toss these in just after dressing the salad, so they don't get too weighted down with dressing.
(TIP: Save time by using canned beans or frozen edamamae (thawed, of course). And I usually make a big batch of quinoa or rice at the beginning of every week and add to green salads as I make them. If I'm going to used beans and rice, I mix them together in a separate bowl first, so they're thoroughly mixed before adding to the greens.)
If you must add in some meat or tofu, might I suggest small pieces, thoroughly incorporated, to assist your tastebuds in savoring all parts of the salad. Otherwise, old habit may find you skimming the meat off the top, and being too full to eat much greenery, which is not really the effect we're going for! And to keep with my "Cooking to a Minimum Theme", might I suggest adding something simple, such as canned tuna or shrimp or smoked salmon? Or boil some eggs at the beginning of the week and dice into your salads throughout the week.
But don't forget about fruit, too. I love to add in tasty surpises like shredded apples, blueberries, strawberries, grapes, dried cranberries, figs (fresh or dried - yummy!), even orange slices. But don't add them until after you dress the salad - they're yummiest "naked"!
Finally, stick with whole, raw foods and top with corn, avocado, a scoop of guacamole or hummus, or some nuts or seeds, too. I try to stay away from too much dairy, but can't resist topping with goat, feta or parmesan cheese on occasion. Variety is key for your taste buds and your health!
For those of you still rolling your eyes - maybe you have children who have an aversion to all that which is green and uncooked. Where do you think they get that from? (hmmmm...) Try getting them to help you shop or help you in the kitchen (both is best!). If they're still hesitant, resist loading up on cheese, croutons and dressing to get the greens down. Try fresh fruit instead. Who doesn't like blueberries? Grapes? Oranges are fun in salads! Encourage them to try multi-colored versions of traditional salad fare: bell peppers come in purple (FUN!); sunny-yellow lemon cucumbers intrigued me the first time we were introduced; and tomatoes come in orange, yellow, and crazy shades of red - some even have STRIPES! And if all else fails, top your greens with fun things like Goldfish crackers, crispy Asian noodles, some whole grain pasta, organic cottage cheese or tortilla chips. They're better than the alternative: BACK, you fatty, oil-laden croutons!
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.
I have been having the week of all weeks with my MOM. I'm so glad she's here to help out, and it's been so healing to have her all to myself for the week. She's been able to drive me to all of my appointments and take me on all my errands, not to mention indulge me in a little retail therapy, all while Boyfriend can stay home and get some work done. As my full-time caretaker, he's not had much opportunity for anything work or self-related in a LONG time. So throw some intense mountain bike rides and extra sleep in with the web application work he so loves (and needs to do!) while Mom and I are off doing our own thing, and he's been a VERY. HAPPY. BOYFRIEND.
So here's the health update:
Treatment is still going well, no major increase in side effects to report from the last two weeks. Still too skinny and finding it hard to sleep at night with all the steroids, but I just try to take lots of breaks, wind down with my Tulsi Tea, and go to be early. If I'm up at dawn, I'm up at dawn. More meditating time.
Despite my efforts to keep my immune system strong, and I'm not one to get sick much anyway, I'm fighting a sinus cold and laryngitis. Although all the gabbing with Mom is certainly a contributing factor to my voice problem... And I'd like to think that some of the yuckiness that is sliding out of my nose and eyes is bits of tuber running for it's life! ;-D
And it's official: the hair is coming out. In clumps. But only on the right side. So the plan is to take it all off, eventually, maybe by the end of the week. Lots of hats, woo hoo! Boyfriend's excited, 'cause now we'll have the same hair-do!