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're in 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!
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!
It's been a rough week. Side effects are really kicking in, then an ear infection and new antibiotics. Just plain scary and weird to have your body in such a state...
But if you think this video of my little brother shaving his head in support is half as funny as I do, you'll get a good laugh, and we'll all get a little healing. With positivity, laughter and LOVE.
Love you, Little Brother.
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.