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!"
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're traveling again, so I'm still sorting through pictures and stories, but I've come up with a fun list of fast facts a la Girlbert and Boyfriend's Big Road Trip.
Equipped for travel and leisure with:
1 1991 Toyota Land Cruiser
1 bitchin' roof rack (more on that later)
1 2-person tent (cozy, with a GREAT view!)
1 full-sized air mattress
1 feather bed
1 blanket, set of sheets
2 down comforters (for desert camping, no less)
2 mountain bikes, helmets, shoes, tire pump, etc.
3 yummy pillows (because two couldn't possibly suffice)
1 trunk containing food and food preparation, including Grandma's cast iron pan and Boyfriend's favorite (favourite) wooden spatula (which we left at the first stop, but thankfully promised to be kept safe by our gracious host)
1 propane stove
Electronically prepared with:
1 inverter with 4 AC plugs with which to charge all electronic devices while on the road
2 cameras, 1 point and shoot with video, 1 digital SLR with 2 rechargable batteries
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.
We spoke with Boyfriend's 95-year-old Grandma in Chicago the other day. She came over to the U.S. from Poland when she was just sixteen. By herself. She didn't know a word of English when she got off the boat in America. So, she taught herself English by reading the dictionary.
Boyfriend: "Do you still read the dictionary, Grandma?" Grandma: "You bet! It's my bible!"
You go, Grandma.
(Grandma Chowanski in the center at the baby shower in March. My mom and I on her left. Kurt and Isabel on her right. Eric's parents, Wanda and Walter, on the far left and far right.)
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.
When I was back in Illinois last month, the timing of my visit allowed me to attend a baby shower for Boyfriend's brother (Kurt) and sister-in-law (Isabel) - a.k.a. Kurtabel. (What? It's waaaay better than Isaburt!) My first real, live, Polish baby shower was quite the experience, and I was thrilled to get to spend some time with Boyfriend's family. My Mom got to come, too, giving her an opportunity to meet the whole Chowanski clan for the first time. Grandma Chowanski, too. It was great.
So baby Kurtabel has recently set the tone for what we already know about the rest of the Chowanskis - they do things their own way, in their own time.
James Willoughby Chowanski was due May 18, but entered the world nearly a month and a half early, on April 7, 2010. And this little guy is running his own show, with Kurt proudly declaring (with a typical Chowanski chuckle), "He's screaming, all on his own! All four and a half pounds of him!"
Welcome, sweet baby James. Congratulations, Kurtabel. Thank you, Chowanskis, for letting me be a part of your family.
A couple of weeks ago, Boyfriend and I drove out to Vegas to meet Little Brother and his BFF for a series of adventures that can best be described as a Totally Gay Vegas Weekend. My brother's BFF, Mike, is the world's most amazing hair stylist and lives in Vegas. He's an honorary Tomlin - my other little brother. He's also a fabulous host whenever we're all crashing at his place. (Thanks, Mikey! XOXO) Blast for not having any hair for him to cut and style this time! So I got a mani-pedi while my bro got his hair done. (Thanks, Little Brother! XOXO)
I know what you're thinking: "Girlbert, what kind of a brother makes his sister, her brain tumor, and her chaffeur/boyfriend drive all the way to Vegas to see him for the first time in over a year?" And I'd say, "The World's-Biggest-Bette-Midler-Fan, that's what kind of brother!" January 31st just happened to be Bette Midler's closing night after her two-year run at Caesar's Palace in The Showgirl Must Go On. I saw her on opening night with the same boys two years ago, so it only seemed appropriate that we were there on closing weekend.
Bette was A-MAZING. Everyone was in tears for the last few numbers, including the Divine Miss M. It was Boyfriend's first Bette Experience, and as he put it, "She rocked! And she's hilarious - I had no idea." I remember feeling the same way when I saw her for the first time on her Kiss My Brass tour - no idea she was such a fantastic entertainer.
And entertain us she did! Her final performance was particularly moving because Bette was genuinely sad it was over. Us, too. We love you, Bette!