That's HUGE!
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."
This Christmas
[Oops - we forgot to post this one!]
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.
I Have This Rule...
...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 upside 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.
Clearly Due For an Update
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?
LAST DAY
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.
