...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!
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...
Despite all my best efforts to stay unexposed and rested up, the chemo and radiation have supressed my immune system enough that I have a pretty good chest cold. No worries (or temperature, which can be a biggie for a person in my condition), though, I seem to be clearing it out, and should be over it in no time at all. Longer than the average person, obviously, but I'm on the up and up.
But my docs want me wearing a mask on my face in public, (the better to cover the steroid fat-face and acne, I say!), hand sanitizer in my back pocket, and be really cautious. As in, do you really need to go into CostCo today? Probably not...
But we did have some health and banking-related errands to do yesterday, so I got to get out of the car and go into some places. And you wouldn't believe the looks! One of my favorite stops was to the bank for a deposit, and walking in wearing my hat, sunglasses and mask - you should have seen all the teller's faces! They asked, "Can I help you?" through some very intense looks and gritted teeth...fun! "Just need to make a deposit," I said, taking my sunglasses OFF (sheesh) and digging through my purse. They remained ready to push that button.
I did notice that every other person I came across did a double take, but I'd have done the same (and probably have), in the past, never thinking there are people out there with compromised immune systems that have to be really careful during cold and flu season, not to mention this swine flu thing.
But here's the cake: Toward the end of our afternoon errands (we'd already deposited Mom at the airport, so SAD to see her go - such a good time with her!), we decided to pull over at a coffeehouse on State Street and let me run in and get a couple of cups of hot tea, Boyfriend staying in the car. So I pulled my mask on, hopped out and opened the coffeehouse door to THE. DIRTIEST. LOOK. EVER. The dirty look was shot by a customer who'd turned from the counter to watch me step inside. I smiled through my mask, he was probably unable to see it. He turned away, finished paying, the woman he was with standing off to my other side, waiting for their order. Then he turned back to me.
"ARE YOU CONTAGIOUS?"
With what, the swine flu? Like I'm just walking around with the swine flu? 'Cause I heard they all can't get out of bed, or are in the hospital.
"Actually, I'm a cancer patient, and the chemo and radiation is suppressing my immune system, so I'm wearing this (pointing to my mask) to prevent myself from being exposed to anyone else who might be carrying something." Like yourself, sir.
"Humph," he frowned and walked past me.
My eyes followed, and the woman he was with looked ABSOLUTELY. MORTIFIED.
I turned back to the counter, and all the teenage coffee shop workers behind the counter were significantly wide-eyed with disbelief at what they had just witnessed. In unison, "What can we get you started?"
"A cup of chamomile, and a cup of jasmine tea, please."
Want to help with the party? Anything to assist Jill and Dirk in putting together this amazing effort would be so appreciated! If you have time to help set up, or connections in any of the following areas, please contact Jill directly.
We don't have a monetary goal in mind, for several reasons: We have plenty of ideas for ways people can help us if they simply have time or used items to donate. We also want some amount of what people would like to contribute be in the form of credit at groceries, markets, and complementary health care centers that we frequent to assist me in complementing the Tuber Removal Program. View the full wish list and party details here.
A lot has happened! And I intended to write everday, but I've been allowing Boyfriend to step in with major updates, because we're on the low-stress-for-Girlbert-program. And I've been trying to be a good girl, despite some peaking (drug-induced) creative and physical energy.
So this is long-winded, but hopefully broken down into enough chunks that you can all manage, whether you choose to skim it over or swallow it whole. I did attempt to put in some kind of order of importance...
Medi-Cal Continues To Give Me Seizures Boyfriend touched on this in his birthday post from yesterday, but after 7 months of hoops with Medi-Cal, I have been informed of denial due to a technicality. My case has been closed, and I will have to appeal the denial, as well as REAPPLY and start the process over to get the ball rolling back in my court again. 7 months, people. And this is after my Ninja Neurologist got me on the fast-track to approval with a letter stating that I may not be alive in a year without treatment. Unbelievable, but as always, we'll deal. We're putting our heads down with some social workers and lawyer friends, and we'll get it turned around. The squeaky wheel plan continues.
Treatment Is Going Well I am really happy to report that two weeks into chemo and radiation, I've had no debilitating side effects. All the medication I'm on has side effects, don't get me wrong, but I'm managing very well with rest, good food, a regular schedule, and loads and loads of meditation to keep my mind in order. My docs warned me that the irritation of radiation would cause some more swelling and sure enough, my seizures have increased a bit - I have one or two mild, conscious episodes a day, but only one like the episode Boyfriend wrote about on Friday, and nothing like that since. I took my activity level down a notch (steroids make me feel like Superwoman!) after Friday, and my Ninja Neurologist tweaked my seizure meds and added a sedative/anti-seizure drug for me to take at night to sleep.
My docs have all warned me that the further I get into radiation, the more side effects I may experience, as the tuber dies off (ba-bye little tuber!), and my brain may become more irritated throughout. But we're all prepared to deal - I'll get to take more naps, maybe!
The oral chemo is going really smoothly. The anti-nasuea drug seems to be doing the trick, not to mention I take my one, oral dose right before bed on an empty stomach. My only complaint is that one of the major side effects is, of course, CONSTIPATION. So despite the fact we're still pretty high raw, juicing like fiends, and I'm downing water like it's going out of style, hello hemmoroids! Good times, but not that I don't have the experience to handle it. So back to Alice I'll go, as necessary. I'll need a good cleanse when this is all over, anyway.
So just how is Au-Naturale-Girlbert and her complementary treatment plan really feel about all the drugs and western medicine? That it's the right thing for my body, right now. I'm grateful for it, and know this is the route I need to take to heal my body, and ELIMINATE THE TUBER. But I'm asking LOTS of questions. Every side effect, every medication and dosage change. And my doctors have thoroughly explained to me the necessity and purpose of each drug so that I understand the benefits for any detriments. My comfort level with all of it is quite high. My only concern is that my mind stay sharp and functional, and hasn't seemed to be an issue with all the increased spiritual practice. My mind is as clear and grounded as it's ever been, despite all the drugs. I couldn't feel more blessed.
About My Weight Many of you have asked if I'm eating. Yeah, I'm skinny. Too skinny. Skinnier than I've ever been, but I'm ravenous! But I agree that checking in at 5'8" and under 120 pounds is a bit disconcerting (haven't weighed anywhere near that since MIDDLE school!), so I asked Uber-Oncologist Dr. G, about it before I even began treatment. "I have one more question." At 6pm, the tail-end of our squeezed-in appointment to get some questions answered before I begain treatment the following week. "Sure - what's that?" He turned toward me, from the computer monitor full of my scans and charts. "I've lost a lot of weight - more than 15 pounds in a couple of months - is that the steroid making my metabolism go wild or something? I though steoids were supposed to make me gain wight. My energy has been really high, and I know they have that effect, too." "How's your appetite?" "I've been ravenous." "Have you been thirsty? Having to urinate a lot?" "Really thirsty and I have to pee all the time." "Hmm. Your blood sugar was pretty high in the hospital," he referred to his computer screen for reference, "126. Steroids can cause diabetes." The tears came instantly. "That's in my family history," I whimpered. The D-word. After watching many family members struggle with diabetes, my ultimate health goal had been to keep myself from ever having to hear a doctor tell me I had the D-word. Cancer schmancer. Dr. G shook his head reassuringly. "Dont worry - medically-induced diabetes is totally reversible. But we'll check your blood sugar in your blood tests anyway to make sure." My blood test the next day showed my blood sugar back to normal. Whew.
In the meantime, I shared this story with my brother, who shares my ultimate health goal of avoiding the D-diagnosis. Perhaps channelling our Grandma T's (sometimes inappropriate) sense of humor, he exclaimed, "Oh my - 118 pounds? Brain cancer is like the best weight loss program ever!"
And we laughed, because we're Tomlins.
About That Trip Up North... Boyfriend already touched on this in his earlier post, and I've been meaning to, oh, but for the time of really doing the words justice!
Here's the bomb: Following my treatment at the end of November, we'll be moving up to Marin County, CA - the lovely town of Fairfax, to be precise.
So you remember that trip, over a month ago, now? I experienced a profound shift while visiting our dear friends in Fairfax, and sensed an overwhelming connection to the place as a healing center. A mecca, even. Upon driving into town the first time, we came upon healing center after local market, after meditation retreat center after organic restaurant after holistic health care office, and my only thought was that this was the place for me. Seem abrupt? All I can say is that it immediately resonated with me at such a high level, it couldn't be ignored, and the 7 days we spent there only confirmed what I knew in that initial moment. Boyfriend and I both experienced a huge shift in our relationship during our stay, and we're not attributing that to any accident. We also deepened our relationship with the dear friends who put us up for the week, and can hardly wait to live in their community. Not to mention a much better proximity to a major University Hospital, more dear friends, and the Neuro-Accupuncturist I will continue to see throughout my healing journey. The utmost importance has been placed on my health, increased autonomy, adjacency to nature, proximity and access to like-minded, spirit-driven people, continued healing, and happiness.
Friends and Family Visiting I've just wrapped up well-timed visits from friends and family this week. A great girlfriend from Wisconsin was here over the weekend with her little boy, and such a treat to spend time with them - it'd been over a year since I'd seen her last. The magic of spending time with children - very healing. Then my baby cousin (okay, so she's 24!), whom I haven't seen for over 12 years, and her boyfriend stayed with us Wednesday night, and I couldn't be more thrilled to see her and connect with out-of-touch family at this time in my life. The universe continues to astound...
Relief Is On The Way In the form of more family coming in to help out, as Boyfriend and I continue to manage schedules, work, and appointments. We couldn't be more thrilled that my mom will be here next Tuesday for eight days to help out with driving, erranding, cooking and whatever. Not too mention lots of hugs and love. Just the relief of not having to drive me to treatment everyday will free up Boyfriend's schedule immensely to get some much needed work done, which will help our financial situation tremendously. Then Boyfriend's parents will be coming on November 4th for about two weeks, and we're are thrilled for the company and help. They have lots of friends in CA, too, to they're looking at it as a double treat. Can't wait to see you all. Thank you, thank you, thank you.
That about wraps it up! Please keep in mind that I share my journey on this blog because I believe it is a powerful tool to help me heal. Your traffic, your comments, your positive energy - I FEEL all of it, and be assured that what you put out into the universe in a loving way will come back to you in amazing and profound ways. So leave your love here, and you'll heal yourself...
Earlier this week we found out that Medi-Cal denied Girlbert's application on a technicality. Happy birthday. Yes, we can appeal. Yes, we can submit a new application so all is not lost. But the cost to her in time and effort was enormous so she was a bit devastated, had a seizure, meditated, and tried to grasp the technicalities of what to do now. And of course, her creditors phone calls just keep coming. So the situation is dire but not desperate.
Today Lisa woke me with painful cramps and joint pain in her knees and feet. Maybe it's the medications, maybe it's overuse, but whatever it is the pain brings the risk of seizure. But for Lisa, it was a wonderful morning, looking out our window seeing the trees just touched by the new day's light through the mist. It was wonderful because while we had another exausting day to look forward to, for a few moments we could just enjoy each other's company. It was wonderful because it was her Birthday.
The determination against any odds to be positive is what makes Lisa shine. While it might seem irrational and delusional, she knows only too well the situation, with daily seizures, now near constant pain, risk and reminders at ever turn. Yet looking around the waiting rooms we now frequent, the grocery store, or walking down State Street, Lisa leaves a wake of people whose days have been brightened by her Shiny, Sparkly Energy.
Today, there was another side to her. She wore her "What are you grateful for?" t-shirt from Cafe Gratitude. We bought cupcakes from the Crushcake Cupcakery and she went to every technician, nurse, and doctor she has and explained how she could not possibly express the extreme gratitude she has for everything they have done and continue to do. And she passed out cupcakes. And when I compare how she looked then to how she looked recieving this beautiful flower arrangement (and we haven't afforded ourselves flowers in a long time), I'd say she beamed with the flowers but she was simply overpowered with joy giving away cupcakes on her birthday. As she said this evening: "Are you happy? Because that's all I care about." That is Lisa.