As in, Rainbows and Unicorns, the day has arrived! It is my last day of my last week of chemo! It's been a loong three years, but it's finally over.
I can hardly believe it. Especially since my body's not quite aware of a reason to celebrate just yet. As special as this day is in my head and heart, as much as I feel like I've crossed some sort of finish line or reached the other side of some gianormous obstacle, it was just another typically yucky week of chemo for my poor tummy. She doesn't know that last night's little white pill of digestive unhappiness (who we love for taking care of that Terrible Tuber of Brain-Unhappiness!) was the LAST ONE. EVER!
So once we recover, you can bet we'll be ready to PARTY! With Rainbows and Unicorns and CAKE! The question is, who's going to bring the CAKE? (Lemon Poppyseed is my current favorite!)
I 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!
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.
We have returned. What's that? You didn't know we were gone? Great.
Our trip had been in the works for months, with the primary purpose being to visit Boyfriend's brother, sister-in-law, and new nephew, James. Road tripping inevitably involves side trips and unexpected delays, but the plan, as loosely defined as it were, was to get out of California and do something different! No doctor appointments, nothing concrete, no obligations. Just drive and see. Sweet flexibility!
We didn't make a big deal prior to our departure, because my platelets were scary low, throwing my chemo schedule for a loop because "there's really nothing you can do, but wait for them to go back up again." I wasn't going anywhere until those platelets went back up again. So much for flexible.
Our first big road trip, our first vacation in, err... two years, all up in the air - because I needed more platelets?
Nobody was going to tell Girlbert there was nothing I could do, so I took those uncooperative little platelets into my own hands. I opened my mind, Googled, asked my cancer support group friends, took my vitamins, exercised, and I ate and ate the biggest variety of foods I could come up with in five days. On day five I took my next blood test and marched it upstairs to oncology.
"This is better - whatever you're doing is working!" My uber-oncologist smiled and shook his head as he flipped through the results of my blood tests, past and present. I'd done my homework, listened to my body, and more than doubled my platelets in five days. Whew for a flexible mind!
I started my chemo that night. We packed up and left the next day.
More on the Flexible Adventures of Girlbert and Boyfriend coming soon!
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.
As I stood at the kitchen sink this evening, on my own two feet, washing the dishes that I had just eaten dinner off of, not feeling nauseated or woozy or sick in any way, I thought, "Things are looking up!"
And BOOM! I had a post to write.
This week marks two years for Boyfriend and I. We had our first date two years ago this very week. Things were most certainly looking up for me then, just having moved to California from Colorado, I was looking forward to a fresh start. Just like we are now that I've gotten through chemo-radiation and my first five days of monthly chemo. We now know what to expect (chemo sucks for all five days, plus three or four after) and are looking forward to a little more fun in the year ahead. A fresh start.
The first date story:
I met a cute sailor on a wine tour on a previous trip to California. Now that I was here, I had invited him up to Los Alamos (from Somis, about 100 miles!) for lunch, and if he wanted to stay for dinner, I would love to cook him dinner, too.
Lunch was a bold statement about the way I like to eat – pasta sautéed with tuna, capers, garlic, and anchovies in olive oil. He was impressed at this brazen combination of flavors for our first meal. After lunch, he wanted to take me on a drive. It had snowed in the mountains the day before, and wouldn't it be fun to go check it out? I thought, a spring snow – how nice. Didn’t I move here all the way from Denver because I can’t stand the snow?
After a beautiful, winding drive up the mountain, we stopped and got out of the car to check out the view. We were standing at the top of a mountain overlooking the Santa Ynez Valley, arms wrapped around one another for warmth, and he explained that all of the green leaves in the trees are mistletoe, which is actually a parasite. Mistletoe live in the trees, getting all their nutrients from the other organism. I had no idea - a real botany lesson! So, it’s windy, we’re freezing (did I mention the snow?), and we get back in the car to drive down the mountain.
He's pointing out the mistletoe growing on the trees on the way down, and we drive under a bit of it growing over the road. He stops the car, and says, “Look up.” I’m thinking this is going to somehow further my education about mistletoe and associated plant life, so what do I do, but what I’m told. I look up out the sunroof, and there is indeed a clump of mistletoe hanging over the car. As I turn my head toward him to smile, my mouth runs into his. That certainly did further my education about mistletoe – not in a way I would have guessed, but it did, nonetheless.
Things are looking up, as long as you know where to look. Keep looking up!
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."