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.
...that I don't bitch and moan on this website. It's not that I'm trying to hide anything, it's just that I fully believe that there is an up-side to everything. For every bad, there is a good. Even if the good is not visible on a given day, it's just ahead, I just have to be patient, or learn the lesson. Never mind that it's generally far more healing for me to write about the positive than to dwell on negative.
But I've been really crabby and ungrateful - last week was a hell of a week in terms of medication and side effect adjustments. As in goodbye steroid-induced manic superwoman, hello and welcome back, Keppra-induced brain fog, headaches and fatigue.
So I was preparing a terrible, long-winded post about breaking my rule, insert bitching and moaning here, a little "poor me" on top, and just before hitting publish...
The mail arrived. With a package from someone I've never met in person, but who has become a good friend via email, Facebook and blogging since my diagnosis. Laurel Hermanson sent me a copy of her novel, Soft Landing, and a gift card to Trader Joe's. Wrapped in Girlbert-green paper, tied up in a shiny, brown bow. Oh, and a lovely card with a very touching sentiment. It made me laugh. It produced a smile from a face puffy and tear-streaked after days of hysterical unreasonableness (poor Boyfriend!) I wanted to run right up to Portland and hug her.
Someone I've never met. Wait - there are so many of you whom I've never met. And you send your positivity and love and well wishes and kind, generous gifts. And suddenly I remembered all the people and things I have to be grateful for.
I already know what you're going to say. "What've you been on vacation or something, Girlbert? We're all just waiting here, holding our breath for over a week, because we're all wondering if you'rein the hospital, had your final seizure or something equally horrible."
I did take a picture of a bird. I posted my most fabulously indulgent holiday pie recipe. I've read several magazines. Even watched a movie. It has been a vacation, I guess. Not having to maniacally be at doctor appointments, radiation treatment, picking up prescriptions, keeping track of a five-times-a-day medication schedule... It's like I haven't taken a breath for over seven weeks, and I'm finally getting some air.
So... how about that UPDATE?
My docs have me tapering off the steroids and I can't tell you what a relief that is. I've been on Decadron for almost three months, and I didn't realize how numb and weak I'd become until I fell walking up the steps to my deck on Thanksgiving. Despite some pretty gnarly-looking scrapes and bruises, I felt no pain, whatsoever.
Now I'm on day 10 of an 18-day steroid taper-down schedule and today is the first day I've been able to see my computer screen clearly. And it made me realize that I could now see, hear, and think with a clarity I've not had for months. I've nearly stopped shaking, stumbling, dropping things. I slept through the night last night for the first time since September. I feel the pain in my legs from my fall and I'm grateful for it. I'm ALIVE.
So I'm beginning to carefully put myself back in order. I've started practicing yoga again and already feel more coordinated. (But an inverted pose did make me pass out - oops). Boyfriend and I have taken walks the last 3 days, and I've felt stronger each time. I'll be riding horses and mountain bikes in no time, right?
I don't have an MRI or doctor appointment until the end of the month. I'm not cleared to travel by plane anywhere, so Boyfriend and I will be taking it easy around here for the holidays. I'm listening to Christmas music, planning, shopping, enjoying the season. Isn't that what normal people do this time of year?
Yesterday was my last day of radiation treatment! And what a day it was. Just pure joy, thankfulness, another undescribable, words-just-can't-touch-it-kind-of-day. But of course, I will haplessly attempt it...
I picked up celebratory cupcakes at Crushcakes Cupcakery (they were fabulously accomodating, again!) for all of my my now dear friends at the Cancer Center of Santa Barbara, Santa Barbara County Clinic and Pharmacy, and other doctors. As I went to my final treatment, last day appointments and picked up my new assortment of medicine for the steroid taper-down (WOO HOO!) that will occur over the next month, I found myself sad to say goodbye, but hoping the next time I see them is at the grocery store, in a restaurant, or the theatre. Where I will run up and give them hugs, and they'll wonder who is this girl, all healthy, and with hair?
So what's next for Girlbert? Well, there's certainly no going back to normal, since there never really was a normal to begin with.
But I tried as best I could to allow myself to do as much of NOTHING as I could muster today. Boyfriend, too. But with all the activity, the schedule of having to be SOMEWHERE, six days a week, often changing multiple times a day, with a moment's notice, there's certainly a lot of catching up to be done. Medi-Cal denial still waiting in the wings. Social Security paperwork and requirements to tidy up. Charity applications to fill out. And the regular stuff of figuring out how to cook, clean, and work to pay rent and bills.
My next MRI and doctor follow-up appointments aren't for over a month - after the holidays. My doctors tell me that although the chemo and radiation have stopped, changes will continue to occur over the next month, and so a picture and any discussion aren't necessary until then. So more wait and see. But time to rest and enjoy the holidays, which is a tremendous blessing!
And finally, some more attention for my horse. I might even read a book or a magazine. Or take a picture of a bird. Let the real healing begin.
My dad writes of this 1978 photo, "...both you and your dad had hair."
How cute are we?
I'm certainly not missing my hair or saddened by the loss of it, thanks to a number of factors:
The first being that I find it quite exhilarating that I can get in and out of the shower, dressed and be out the door in 15 minutes. That's crazy, even considering the fact I've always prided myself on being a pretty low-maintenance horse girl, comfortable popping a ball cap over a pony-tail most days. Even when I wanted to get a bit gussied up, I was a 45-minute-max, shower-to-door-girl. No all-day, multiple-hour beauty routine for me. But 15 minutes? With a shower? Wild!
The second, of course is that Boyfriend continues to be fascinated by my baldness, loves to shave the left side of my head to help me keep it even, and tells me how cute and sexy I am, ummm, pretty much every opportunity he gets. Feels good. And I continue to feel like I won the Boyfriend lottery... How is it that a girl could be so lucky? Sigh.
BUT - I have become OBSESSED with other people's hair. I find myself staring at peoples' hair, wondering, Should I try something like THAT? After years of KNOWING my own hair, and what I think works for me, my face, my hair type, color...suddenly there are SOOOOOOO many options. And it would have NEVER crossed my mind to cut my hair short previously. NEVER. I'm going to be forced to try some short styles as it grows out.
What about highlights? And why not some fun with colors, too? Blonde? Red? Things I would have never entertained previously because the committment would be too permanent on longer hair. People have also told me it may very well come back different - curly, thicker, finer, straighter. I can't wait to see what I have to work with!
So in light of the fact that Monday is my LAST DAY OF RADIATION, I'm open to suggestions. Because it's going to start growing back soon, and a girl has to think about these things!
I need new words. If I could ask just ONE MORE THING of the Universe, it would be for new and improved words that could come just even close to the MAGNITUDE of what happened on Saturday. I've made up words before - INCREDITUDE, for instance, but we already used that one. In fact it became the name of the party - my fabulous friend and brilliant hostess Jill Freeland's idea.
But to make up a word, or even multiple words for how I felt on Saturday - JUST NOT POSSIBLE.
So all I can do is thank you all. For being there. For your energy. For your kindness. For your love. And the gifts...
Unbelievable. And so helpful. I'm still at a complete loss as to how to express the overwhelming love that I feel for you all.
Enough with the green wig, right? Did she do it? Did Girlbert shave her head?
And nearly a week ago, at that. But then I went and got all sick with a broken immune system, and have been useless to edit video and write anything to do it justice. And you have to do something like shaving your head JUSTICE, am I right?
Because it's not everyday that somebody shaves her head BALD. Even Britney only did that once.
Extra special thanks and so much gratitude to the entire staff of the Hans Wolf Salon and Spa in Santa Barbara. Ryan is the man responsible for the Extreme Girlbert Makeover a couple of months ago, and he did the head-shaving honors, joyfully declaring, "I've always wanted to shave a woman's head!" So glad to be of service. And Colleen Elizabeth fixed up my eyebrows so that my face would be up to the challenge of pulling off BALD.
I finally get a good, clear view of my biopsy scar. Kinda Franken-like, just in time for Halloween, I guess.
And then my brother shaved his head, declaring, "I can't let you be the only bald Tomlin!" We've never looked so alike - obviously! Boyfriend, of course, shaves his head anyway, so I kinda feel like the hot, bald chick now. It helps that he tells me that every five minutes, of course...
My life is a fairy-tale.
If only I could click my ruby-slippered heels together and have each of my favorite bald men on either arm...