I painted this watercolor for my Mom for Mother's Day. She received them the Day After Mother's Day, because that's my style. She's a great Mom, a real original, so I thought she deserved a Girlbert original. They're beautiful flowers, just like her. She tells me she framed them and they're hanging in my old bedroom, now a den/guest room. I can't wait to see them again - Mom, Dad, and the room! The room that my Little Brother thinks that is actually his old room, which is just too silly, since my art is hanging in there.
They're only for her, so I won't be selling any prints, but I was too happy with them to not share.
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!
Today is my little brother's 31st birthday. By the time I get this posted, he will have already have celebrated with a pint (or two) and some friends in London. By the time he reads this, he will have another day on his 31 years.
Happy birthday, Little Brother! I hope you had an amazing day filled with all of your favorite things - music, running and Chipotle burritos! I love you for being my mirror, my ass-kicker, my finger on the pulse of current music, my teacher, my inspiration and my friend. I love that we get each other better than anybody else on the planet. Congratulations on another year well-lived. There's a Hostess Cupcake waiting for you at my house.
I miss him terribly, especially on birthdays. One of my favorite things about him is our ability to laugh at anything. Ourselves. Each other. He's one of the funniest people I know.
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.
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!
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...
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...
So good to be home. My own shower. My own bed. My juicer. And when Truly isn't sitting directly on my body, I find her purposefully draped over my hospital bag, opening an eye as if to say, "Relax. You're soooo not going anywhere." So, ahhhh...HOME.
Not that the hospital stay was prison in any way. Once I was there, a sense of peace and meaning settled over me as I was forced to do nothing but SIT in my hospital bed and soak up a steady supply of information, care, comfort and support, like a fresh sponge. I maintained an extremely clear head whilst resting in my hospital bed, and I was able to absorb and retain the wealth of what could have been overwhelming information with ease.
I am continuing to experience a shift in clarity that is making more aware of my wants and needs than I have ever felt. In my entire lifetime. Not just that, but my ability to express them is developing at a rapid pace, and I am enveloped in a certainty that I've never known. I know what I need, and how to ask for it! I am more comfortable in my own skin than I ever though was possible. Exhilarating.
Boyfriend is over the moon at my growing ability to communicate, and our relationship has evolved to a new level entirely. I turned to him at one point early this week and cried, "I just want to be normal - for US." He hugged me close and said, "Normal's overrated - you're extraordinary." It helps to have extraordinary support. For all the guilt I've felt in the recent past over becoming/being a burden, I have a renewed clarity that he's by my side for a reason, we're in this together, and now that my ability to express my needs has reached this level, things will continue be so much smoother between us.
A brief timeline on my hospital stay:
Monday: Arrived at the Cottage Hospital ER at nearly 7 in the evening after persistent seizure symptoms wouldn't subside. Check in, examination, and finding me a room took several hours - it was after 2am before I was settled and able to think about sleep.
Tuesday: I got very little sleep. I was fatigued and tired most of the day - the tingling and discomfort on my left side rose to seizure-like crescendoes all day, sometimes as often several times an hour. My Ninja Neurologist was there, providing info, coordinating meetings with other doctors, working with the social worker on Medi-Cal. Can't say enough about that man. I was happy to sit back and let everybody work while I struggled with the ongoing fatigue and discomfort.
Wednesday: There was no Pictionary-style pad and easel, laser pointers or slideshow projectors available for my consult with my oncologist, the fabulous Dr. G, but he was kind enough to do some exaggeratively helpful doodling on paper to depict just what he sees on the MRI and explain just what is happening within the limited confines of my skull and why my body is reacting the way she is. As he explained it, "the tumor appears to be growing from the inside, causing swelling, and an increase in the shift of your brain's midline, which is putting pressure on your brain and causing the increased symptoms." He also used words like herniation to explain why there's just no more wiggle room for that damn tumor. And why can't the symptoms continue to be managed with more medication, until we get on with treatment? "The longer you have the steroid keeping your swelling down, the more room you're actually making for the tumor to possibly get MORE aggressive." Yikes. "Nevermind the long-term affects the steroids have on your body anyway, its best to use them only when absolutely necessary. And you've already been on the steroid almost two weeks." We wound up our meeting with a discussion on treatment options, Dr. G running down the hallway of the hospital to go print some clinical studies off WebMD for me to look over. He stressed the effectiveness of a combined chemo-radiation treatment, usually a 42-day series, and made a call to the radiation oncolologist to have him come up and see me the next day. He was with us from 8pm to past 9 o'clock. Extraordinary.
Thursday: I met with my new radation oncologist, Dr. S, about radiation treatment. He also answered all of my questions with the utmost compassion, thoughtfully explaining the differences between stereotactic radiotherapy, conformal radiotherapy, and whole brain radiation. All terms that have been strewn around, but not fully understood by myself. Until now. I have a radation planning session with Dr. S at the Cancer Center of Santa Barbara on Tuesday to discuss details of treatment. Lots more to learn, and he continually emphasized, "I expect to have to answer many questions twice, explain things many times, so just keep asking. It's a lot to absorb and take in, don't worry." I'm not.
Yesterday I spoke with my brother for the first time this week, and his ability to state the obvious always refreshes my perspective. I cried, "I just didn't think this scary, chemo-radiation route was for me..." "Well that tumor's not for you, either, so you need to get it out of there! It's time for you to kick it out! There's no free rent in Tomlin heads!" The tears of sadness quickly turned tears of laughter. I LOVE YOU, Little Brother.
I was discharged from the hospital yesterday afternoon. The numbness and tingling had been to a consistently LOW level all day and any surges that came up would be gone within a minute or so. I had met with all the doctors I needed, appointments for next week have been made, and I'm comfortable managing the minimal symptoms on my own with rest and my regular medications. The discharge process was a bit slow, and I was ready to go, so we were actually waiting at the door of my room when the discharge escort came up for me. She had a wheelchair.
"I don't need a ride," I smiled at her. I was thinking I might like the walk. "Oh, it's SOP." "What does that mean?" "Standard Operating Procedure." She looked at me quizically. Boyfriend chimed in, "Lisa wouldn't know what that means - she doesn't do anything SOP." "Please sit down." I did, and she wheeled me all the way to the hospital's front door.
I couldn't believe it the first time around. I couldn't believe there could be so many either misinformed or hateful Californians. And here we are again.
Boyfriend and I put our names on the mailing list for the Courage Campaign last fall, after Californians voted fo pass Proposition 8 with 52.24% of the vote. After attending a screening of Milk in December which was followed by a candlight vigil and conversation with gay rights activists, we were moved to do something.
So I began sharing the story of Harvey Milk, encouraging friends, family, everyone to see the movie, to learn about this important, but overlooked, piece of American history, and to understand the how important it is to stand up for everyone's human rights. I told people, "The thing is, once you know someone who is gay, if you have a family member who is gay, gay rights becomes human rights, and it's a no-brainer. We're all human." But my own brother doesn't have the same rights as I do, and I can't imagine how that is possible for one second.
Boyfriend was compelled to write down his thoughts all those months ago. I'll share them with you now:
"Watching the movie Milk made me realize a number of things. It made me realize that bigotry is as alive today as it was a century ago. It made me realize the amount of courage being openly gay requires, to say nothing of taking a stand on an issue or seeking office. It starkly demonstrated the difference between being open with strangers and being open with your family or others whose opinions matter so much more.
Bigotry does not stand on Reason. Bigotry stands on dogma or certainty in the unprovable. Bigotry stands on the fact that one's neighbors believe the same way. Unfortunately, it stands on the fear of speaking out in the face of near universal hostility, a hostility itself born of fear.
It is easy, being straight, to disregard gay rights as a fringe issue. But in the end, it's no different than what Reverend Martin Niemoeller's words so starkly spoke of in Nazi Germany: “... Then they came for me, and by that time there was no one left to speak up.” We have freedom only when everyone has freedom.
America is one of the very few places (and times) in all of world history where personal and religious freedom allow a person to practice or state one's beliefs openly. "Love that or leave it" as Mr. Milk was quoted as saying in the movie. Undermine that and none of us have freedom.
What the Milk movie made me realize is just how important personal courage is in fighting bigotry. Personal courage is the willingness to stand alone, to stand up in the face of near universal disapproval from both strangers as well as the ones we love.
The personal courage of early believers in Christianity to die for their faith didn't lead to extermination; it led to mass conversion. To me this is the most important thing for the gay rights movement to (re-)learn today. Let the Declaration of Independence stand on Reason. Let the courts stand on Reason. And let how you believe stand on Reason. But convince others with personal courage."
So while the California State Supreme Court's decision to uphold Proposition 8 was extremely disappointing, I'm not giving up hope. Life is not worth living without hope. I'm with Harvey Milk.
Share your thoughts and stories of personal courage here.