I find it perfectly appropriate that Santa Barbara seems to be having the most cleansing powerwash of a Super Rainstorm today on the first day of Spring 2011. Seeing as how there's not much to do outside today, I'll sit inside, cozied up to the fire in my little cabin in the woods, listen to the rain on the roof (in the bucket under the skylight, too) and reflect on the messages of the changing season and cleansing rain.
Such a magnificent metaphor, Spring is, with the cleaning, renewal, rebirth, spring showers nourishing new growth, and fresh starts. I've been having a similar experience within myself, as persistent positivity continues to pay off in the way of increased opportunities thus far in 2011.
I'm preparing for my own rebirth of sorts as I approach my "cancer-versary". April marks two years since my brain cancer diagnosis, and while I continue monthly chemo as a precautionary measure, that nasty old tuber thankfully remains missing, nowhere to be found, in any of my scans since the December 2, 2010 MRI that had us all asking, "Where'd it go?" Best day ever...
So even though the posting has been light here on Girlbert.com, it simply means that I've had other things to do beside dwelling on that silly old tumor that isn't there! I'm finding myself getting wrapped up in other activities, you know, the stuff of life? Finding myself less hindered by health concerns (and the nasty anxiety that comes with them), I'm getting a fresh start with a new version of normal. Opportunities abound in 2011! It goes something like this...
I'm learning new things: taking watercolor and yoga classes at the Cancer Center of Santa Barbara. So important to keep my brain taking in new information, my mind happy, and my body active; as I continue on my healing journey.
I'm getting back on the horse: riding, teaching, and training. Very important that a horse girl have horses to ride, pamper, and learn from. Many opportunities to do just that have recently presented themselves, making me think I could find work doing what I love, just as soon as I'm ready!
I'm gaining control over my financial situation: tackling my ongoing credit issues and thinking about what kind of work I can do that will supplement our income.
I'm going places: I'm looking forward to my first trip abroad this week - I'll be traveling to England with my Mom to visit my brother for the next two weeks! I'm flying to Chicago first, then Mom and I leave the next day for London. A couple of days there with my bro and then we're taking the train to Paris for the weekend! The second weekend we'll get to see Stonehenge, which has long been on my "Must See Before I Die" list! I'm bursting with excitement about getting spend time my parents and brother, but I'm over-the-top-busting-at-the-seams-giddy about seeing England and Paris! Lifetime opportunity courtesy of my amazing parents. Love you guys!
I'm making more time for social activities: Boyfriend and I are making a point to take ourselves out for "Date Nights" after two years of putting "Us" on the backburner for my physical health. I'm making new friends through all of my classes, support groups and horse activities; and reconnecting with old friends, too. Interacting with people and putting myself out there as a soon-to-be-employable horse girl again has been good for my mind and spirit!
I'm happy: I see everything I've overcome in the last couple of years and I'm smiling. A lot. I'm letting the creative, interested, smart, curious horsegirl out to play! And she's having fun, even in the rain!
I'm grateful: I acknowledge all of the help and support I've received in the last couple of years, and I'm humbled by all the love and kindness that continues to flow in from friends, family, and even strangers. Virtual hugs!
So - the messages of spring are reccurring, universal, and blatantly obvious. My brain tumor is gone, then my car breaks. My car is fixed, turned out not to be a big deal, but I have to file for bankruptcy. But that's life - your very own version of Mr. Toad's Wild Ride through a series of ups and downs, with the point being there is an up to every down. Realizing that is the biggest hurdle of all, so once you're there, the rest is easier and the lessons, clearer.
So weather the storm, because there's always something good on the other side. Waiting out the rain, no matter how torrential, is the only way to get to the rainbows, the flowers, the sparkling trees, green grass, and singing birds. And the storm passes more quickly if you learn to smile, laugh, and dance in the rain!
So yesterday was a monumental day. Make that a tremenda-mental day. Monumenta-mendous? Never mind...
It was BIG. It was GOOD. BIG news, GOOD day. GOOD news, BIG day.
What I'm getting at is: It's GONE! I think it's been around the world three times already via Spacebook, but in case you haven't heard - the tuber is gone. G-O-N-E. Gone.
I really never thought I would see this day. Ever. But if I were to see it, it would be years down the road. Years of struggling, waiting for the newest treatment, trying the next thing on my list of holistic therapies; before the day would come that my oncologist would speak the words, "the tumor is gone."
But it was yesterday, after a long week of chemo, not enough sleep, no Boyfriend to hold my hand during my appointment; that my Uber-Oncologist opened with, "Your MRI looks good - really good." Looking up from the report, he smiled and continued, "At first, I thought I was looking at somebody else's MRI - there is no longer a mass, just some scar tissue from the radiation."
"Wait, what?" I'm sure the look on my face said it all - NO FREAKING WAY.
Dr. G confirmed that I had heard correctly: "The tumor is gone, what's left is basically just a scar."
"Wow - really?" Dumbstruck. Jaw resting on lap.
"Yep. So your question from months ago about whether or not surgery would ever be an option - there's nothing to take out!"
"That's... "...words... " uh - mazing! I can't believe it!"
"Believe it." He proceeded to go over the images from the scan of my brain taken earlier that day, pointing out any light areas as "just scarred blood vessels from the radiation. Anybody's brain could have that - all we have is just have a guess of where the tumor was, at this point." Then the previous year's worth of images, all rock-solidly "stable" with a 5cm X 2cm mass in my right temporal lobe. Wow - where did the little bugger go?
Then my (pre-treatment) scan from July 2009 was on the screen, and the tears started. Point A to Point B was suddenly a blur, and reality struck - Will you look at that? The difference between "now" and "then" was stupefying. My poor little brain had been in bad shape, all squished off to one side, just over one year ago. We've been through the war, and we've won! I have a Super-Brain, and together, we kicked some tuber arse! Buh-bye, brain-vader!
IMAGE NOTE: The images at right are yesterday's scan (top) and my July 2009 scan (bottom). It was after the July 2009 scan that my Ninja Neurologist said to me quite frankly, "If you don't pursue treatment soon, you're going to die of brain cancer."
To which I arrogantly replied,"I'm not going to die of brain cancer."
"Then what are you waiting for?" he shot back.
I didn't have an answer. What was I waiting for?
So I stopped waiting and started healing and here I am, one year later, and it's GONE? Already?
I just turned 34. Yes, I know I'm not old - that's not where I'm going at all. One of the benefits to this whole Brain Cancer Thing is newfound perspective - every day is a blessing, kids. Birthdays have always been exciting, celebrated milestones for me, and this year was no exception: Boyfriend took me out to see Secretariat, brought me home and fed me delicious homemade pizza and some yummy red wine. The next morning he whisked me away for a weekend of camping, hiking and hot springs. Double-super-extra-credit for him!
Yay for another year well-lived...
I turned 33 shortly after starting radiation (seven weeks) and chemotherapy last year. I can hardly believe that was over a year ago. So if 32 was the year I was diagnosed with brain cancer, 33 was the year I began to beat the crap out of that little brain tumor! Not to mention the year I won my battle with MediCal. And got my ability to drive back. Every year brings new adventures - just what will the next year bring?
But let's not get ahead of ourselves...
I realize that I haven't updated you (healthwise) in a while, and some of you (so sweet!) have been asking. Others have made comments that they don't know if I want to talk about it, so they haven't wanted to ask. Well, I haven't wanted to bore you with it, but here's the quick update, for those of you who wonder:
The latest photo shoot: My most recent MRI was October 5th. The images show further reduction in "enhancement" (fancy medical term for irritation in the tissue) surrounding the tumor and the tumor's size remains stable. This might not sound that exciting, but they're both really good things. It means my continued monthly chemo is working, and it's keeping the tumor from growing back at all. Which means my brain is happy. Which means fewer seizures. Which makes me happy.
The chemo story: My monthly chemo regimen continues. I take five doses of the oral chemotherapy drug Temodar over five days, every four to six weeks, depending on how quickly my blood counts recover each round. I seem to be managing my chemo weeks a little better all the time. I didn't even need a day off or any naps this last round (last week). I just finished my eighth round of at least twelve rounds ("one year"). I may or may not continue for another year (or two...) after that, depending on what my doctors and I determine to be the best course of action.
Hello, hair: Have you noticed? My fabulous follicles are beginning to need regular taming! Washing and drying! Styling and product! I started growing it back this spring, so you're looking at about six months worth of grow, baby, grow! I kinda liked the pixie, but alas, this Girlbert has a few too many cowlicks to pull it off without just as much effort as having regular girl-hair, so I let it keep growing. Might stop soon, though - short hair is fun!
In other news: Boyfriend turned 40 in September. I threw him a nice little Birthday-Party-On-A-Budget at our Little Cabin in the Woods. Lots of his friends came, brought food and/or helped me stay organized; making it a really wonderful day for him. Thank you all!
Y'all keep asking: We're not moving to Marin County until I'm finished with chemo treatment, and that could be years. I like (okay, so I LOVE them!) my doctors too much, and they know my case too well, to change providers mid-treatment. I would also have to reapply for MediCal in Marin County if we moved, and I feel like I just finished that battle here in Santa Barbara! Oh, and we're really happy in Santa Barbara: we have lots of friends here, and our cat and horse are happy here, too. So we will stay.
Did I miss anything?
More answers to your most burning questions here, as well.
The plan was to: A#1)Take driver's test. B#2)Pass with flying colors. C#3)Get driver's license back. D#4)Drive myself to my doctor appointments, pick up groceries, or, omigosh, go see my horse! The possibilities were endless!
Ambitious, yes, but I'm nothing if not a little determined to make up for lost time these days. More often than not, my haste to check things off my list comes at my own detriment when those plans mysteriously fall apart...
Me, through frustrated tears: "I like having a plan. Plans make me comfortable. But I'm going on two years of nothing going according to plan." Boyfriend: "I know..." he chuckled and gave me a squeeze, "but let's learn from it, okay?"
So, I laughed too. I know that once I can laugh about it, I can learn from it, and this lesson was begging for my acknowledgement.
Sometimes, it feels like the same lesson, on repeat. I miss something, make a mistake, and the Universe just hits the Play button again. A lighted placard, patiently illuminating the words "Try Again". My own little Groundhog Day...
Sometimes I see it right away and laugh with Her. Sometimes the irony of a lesson slaps you in the face so hard, you can't even see straight right away. The lesson becomes so profoundly clear, you have to admire the creator of the lesson. And then you realize it's you. YOU put yourself in that place to learn THAT. All the while, She's begging you: Are you getting it yet?
Like when you go to take your driver's test, after over a year of not being able to go anywhere by yourself. You're on time, you have all of your paperwork. And you're at the wrong DMV. That's right - I drove to the wrong place to regain the ability to drive by myself. Hmmm...
Today I lost my patience with Her and yelled, "What the F#%*k do you want from me?"
And She shot right back, "For you to do better."
Right. I can, and I will. Three more weeks, but next time, I'll be at the right DMV.
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.
My March round of chemo came just after my return from traveling, so the down time was almost a welcome relief, even if I didn't feel so hot for a week or so. When it was over, I started to exercise again, even rode a horse a few times. (Woot!) I was even thinking about teaching some riding lessons. Getting into a routine felt normal, and I've been craving some normalcy for so long. It's spring, after all, the perfect time to start making some plans!
Then it was time for my April (this week's) round of chemo. The day before I was to start, I told my brother, "I'm not even nervous this time! This one will be easy, I just know it."
Easy. I said it. And I believed it. But easy it was not. It's been a rough week. Chemo was as bad as I remembered it, if not even just a smidge yuckier this time.
I spent most of the week that I was not in bed in a puddle on the couch. Just pouring myself from one horizontal surface to the next. Catching my breath on the toilet every time I had walk to the bathroom. Spending a lot - too much - time reflecting on the absence of normal in my life. The absence of normal in Boyfriend's life, too.
Then I went to my Cancer Support group last night, and the evening's focus was the caregivers and significant others of the cancer patients and survivors. "Cancer Couples Night", if you will.
Boyfriend and I shared our two cents about how hard we've worked over the last year to find our way in the maze that is brain cancer, unemployment, and Medi-Cal. And despite all of our hard work and effort, sometimes it seems like it will never end. And we listened every other couples' story, and realized, They're doing it. We're doing it. And suddenly the only feeling I had left was amazed, awestruck gratitude for the man sitting to my left, squeezing my hand as we talked. My teammate. Squeezing my hand as we listened. My biggest fan. Squeezing my hand and wiping my tears when I cried. My superhero.
Thank you, Eric, for showing me how to love and be loved. You are the squeeze of my life.
Cross your fingers that my Medi-Cal card comes by the time I get back to California next week, so I can pick up my next round of chemo on as soon as I get home. Everybody is getting really tired of hearing, "I'm still pending for Medi-Cal." Myself included.
I received this fantastic email from a friend, then passed it on to a handful of friends, one of whom posted it on her blog. Huh. There's a novel idea. Well, YAHOOIE for that, because I get to put some new content on my site without having to write much. Which is good because I'm on my monthly dose of chemo this week, and the writing's just not flowing...
They call this chemo-brain. It's like the process I have to go through to convice myself that taking a nap is better that just being a grouchy blob on the couch just to be upright for a few hours a day.
Anyway, this is a great story. Enjoy!
One evening an old Cherokee told his grandson about a battle that goes on inside people. He said, "My son, the battle is between two "wolves" inside us all..
One is Evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.
The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith."
The grandson thought about it for a minute and then asked his grandfather: "Which wolf wins?"
The old Cherokee simply replied, "The one you feed."
Is what people usually say when they learn of the size of my brain tumor. And it was.
Monday was scan day. Tuesday I received this voicemail from my Ninja Neurologist:
"Hi Lisa, I just wanted to let you know that I looked at the films of your brain taken yesterday, and good news - everything looks significantly better. There is a substantial decrease in the size of that mass. And the degree of shift caused by all the swelling is almost completely resolved, so it looks like all this therapy is working. Just thought you'd want to know - see you later this month."
Tears running down my face, I did the Tom-Cruise-couch-jump-for-joy, right then and there. Oprah even came over for it.
Wednesday I saw my Uber-Oncologist, and he confirmed the HUGE-ness of the news - my latest scan does in fact show a significant decrease in the size of the tumor - from 8.4cm long X 4cm in diameter to 6cm long X 3cm in diameter. More than a 50% reduction in volume!
He concluded our meeting with, "You can move up north anytime, as far as I'm concerned."
Hi, Boyfriend here. I'm writing because Girlbert continues to struggle with nausea, fatigue, and the lingering remains of another cold and as per Boyfriend's orders is resting on the couch.
This Christmas is, alas, passing so quickly. And well, it continues to do so. Today [Wednesday] we dealt with three separate legal / financial matters and two different health issues. Tomorrow we get to wrap a few presents for each other. And go to the clinic for blood work. But, "quickly" is relative and it doesn't seem to matter how old you are - Christmas just goes truckin' on by all the same.
Recently we drove to the barn to visit Lisa's old and ailing horse Stevie; and while Lisa licked Christmas card envelopes she read the names out loud. It was a long list. But one that should have included even more. All we could write were a few brief lines. "Merry Christmas! Love, Us".
As I drove, listening to Lisa, I thought about how little that is. And about how many more we were leaving out. All the same, it was one of the few things we could do, it took Lisa a lot of effort and was so rewarding. The only other thing we've really been able to do is for a neighbor, T. who doesn't eat as well as he ought. Every so often, Lisa makes a tomatillo salsa and we bring him some because he loves it. It's the smallest thing but it can mean so much.
It made me think about my Uncle's brother, G., who has Down Syndrome. Every Christmas for as long as I can remember, he'd politely open his presents which were always pens and the notepads he so loved "writing" in. But the best part for him is passing out the presents - that's when his eyes sparkle with joy.
On Monday afternoon we went to the ER. We had packed for who-knew-how-long a stay in the hospital - every time we'd been to the ER in the past she'd been admitted. Lisa had a 100.9 fever and with a very low white blood cell count, her doctor thought we needed to go to the ER for more blood tests. Her white blood cell count was still the same old low it's been for months now so they percribed an antiboitic just in case and let us go home that evening.
This year, we have so little to give, not just in gifts, but in time, presence and energy as well. And medically, there's nothing anyone can give Lisa that will change much at this point. So we're just plain grateful for our friends and the ability to go home and have a normal day.
That's really the best Christmas present ever. No one on earth can give that to you. But it's something we're just eternally grateful for. Christmas passes quickly - savor every day.