Hello again. How have you been? I hope all is well in your world. I’ve been pretty happy and healthy these days and turns out - it’s a much better way to live.
Remember last year when I was confined in the house due to you know what? Well Jed and I had to get creative with how we passed the time. So we started making some new tunes and now we have this EP that we’d like to share with you. It’s called This Girl. We hope you enjoy it as much as we enjoyed making it. Go to www.thisgirlmusic.com. It’s available on US iTunes now and internationally very very soon.
Mo finally broke her silence and revealed where the hell she had been for the past several months. Turns out she was roaming the streets, down on her luck, at the end of her rope. Lupus was being a real pill. The chemo wasn’t working and she had lost all hope, thinking it’d got her beat… until she met a nice dame who showed her the way to a strange new joint called Ayurveda, where no-good bums like Cytoxan couldn’t double-cross her no more.
And then Mo totally left you hanging right when she was getting to the good stuff and then tried to make up for it by doing a recap in a sad, half-assed old timey bit and then tried to distract you with the words “last week” but what she really meant was “two months ago” and then continued to refer to herself in the third person.
I really didn’t mean to leave you hanging like that. I’m sorry. Now that I’ve been feeling better I’ve been grabbing life by the balls, you know? I’m living yo! Like a fairly normal person lives and it’s pretty fucking cool. I’m no longer too immunosuppressed to be on airplanes, so that’s great. Jed and I were able to celebrate our three-year anniversary in NYC. Hanging with friends, eating ridiculously good food (low-sodium style) and seeing awesome Broadway shows. And making sweet sweet love of course, because duh, that’s what married people do, right? Like, all the time.
Seriously we do it all the time.
Living it up! We even have some international travel plans in the works. Clearly I’m milking this Being Better phase as much as I possibly can. I’m working out every other day. I’m going to parties. On party buses. Seeing blockbuster movies in crowded movie theaters. Look at me! Zoom bam pow! Pizzazz! Those are the sound effects that accompany me gallivanting around without a care in the world. Pew pew! Arriba! With a Mexican laser gun apparently.
So yeah, happy days are here again. But (there’s always a but isn’t there) if I’m being tooootally honest? I’m still having those days when shit just… ain’t right. Adjusting back into the real world can be a whole other kind of mess. When you’re sick, the world keeps going, with or without your participation in it. Lately I find myself putting serious psychoanalytic effort into figuring out that no, 2011 was not a complete waste and no, I have not been left behind. I was just on a very necessary break. And during that break, my only focus was getting back on my feet. Literally. Now, my focus is, well I have many focuses (foci?) it seems - like my work, catching up on what I missed, the next steps in our marriage. Determining whether or not my body can take such steps. Yet with all these new concerns, I am constantly grateful. Grateful that I’m even here right now, thinking about all this other stuff. I just have to remind myself that feeling adrift every once in a while is part of the process of Being Better.
And I’m better because I’ve integrated Ayurveda into my life. Which brings me back to where I totally abandoned you a few months ago. Panchakarma.
At this point you’re probably wondering “What the hell is Panchakarma?!” I think for the sake of clarity (and to avoid the possibility of me screwing up in any way), I’ll let the most mainstream icon of Ayurveda explain it to you. Say waddup to Deepak Chopra and his definition of Panchakarma on The Chopra Center website. After perusing the site, you’ll get the gist - it’s a deeply detoxifying cleanse, both physically and emotionally. And I was very fortunate to have Martha Soffer and the beautiful wonderful women of Surya Spa guiding me through it all.
The emotional, dare I say spiritual aspect of Panchakarma makes it an experience like no other in my opinion. Which also makes it difficult to explain. Especially since it’s part of a health care tradition that was established over 5000 years ago, full of Sanskrit terms and beliefs that connect us to nature and to the universe. And to each other. In Ayurveda, health is not just the absence of illness. It is the balance and integration of the mind, body and soul. And the interconnectedness of those three things is undeniable. As I’ve said before, I am not an expert on any of this, so please bear with me. As you read further, just try to wrap your Western scientific brains around the old school science of Ayurveda. It took me a while to do so. But I’m a believer. The proof is in the pudding, as they say incorrectly. And this pudding tastes bomb right about now.
In Ayurvedic medicine, imbalances in the body are caused by imbalances in our doshas. What are doshas? Good question. Well. They’re invisible… but they govern the physical processes in our bodies… and uh, whoa, hey! Look who’s here! It’s Deepak again! And he’s here to tell us what doshas are. Isn’t that nice of him? He’s such a good dude. And so generous with his time.
During my first consultation with Martha (I’m going to assume that you just checked out the link to doshas and keep plowing through), it was determined my dosha was Vata-Pitta with a Pitta imbalance. The excess Pitta was the deeper cause of all the inflammation in my kidneys and body in general. That’s why she kept saying, “Too much fire, too much heat,” as she checked my pulse.
“All the fire in you, it’s there because you hold too much inside. Why do you do that?”
When Martha asked me that, I didn’t have an answer. If anything, I wanted to tell her she was wrong. Tell her that she didn’t know anything about me. That over the years I’ve grown into a very strong woman, perfectly capable of communicating my feelings whenever I felt it was absolutely necessary, and NOT when it might be something I’d regret because it really wasn’t that big of deal, or because I wasn’t going to see that person who upset me again anyway, or because I never really liked confrontation or thinking about things that made me sad or angry, so I’d rather just smile and nod and say nothing at all like a good Asian girl, and keep whatever’s bothering me festering inside until – whatever, YOU hold too much inside, Martha! Stop taking my pulse, you’re freaking me out.
She got me thinking. That’s for damn sure. About everything. Suddenly I was rummaging through my entire existence, remembering the parts I thought didn’t matter to me anymore, the parts I had buried for good. My first conversation with her already had me going “what the…?” and I hadn’t even started the actual cleanse yet.
So in true Maurissa fashion, I put a pin in all that, and instead, focused on my four days of “home prep” before Panchakarma. Ohhh home prep. Home prep entails eating easily digestible foods - cooked vegetables, whole grains, soups, cooked fruits. No meat, no dairy, sugars, caffeine, or any processed foods. Many glasses of plain hot water or herbal tea a day. And teaspoons of ghee butter. Then I had to top off day four with some castor oil. So. We have the easily digestible foods, the hot water, the ghee butter and castor oil. I think you’ve probably guessed what the desired outcome was. And HOLY MOLY OUTCOME.
Keep in mind, I was only a month out of doing all that chemotherapy so there were moments that were fairly unpleasant. My body was chock full of toxins at the time and the ghee butter apparently binds to toxins in the tissues of your body, pushes them to your gastrointestinal tract and therefore… the outcome. And by the end of home prep, I felt like a brand new woman. I was ready for Panchakarma.
For the next ten days, I was at Surya Spa every day. The peaceful sanctuary nestled in the hills of the Palisades I told you about, where it smells like Mother Earth’s kitchen? It’s not a bad place to be every day is my point. I was greeted with warm hugs from Martha, and a lovely woman named Sonya, who helps her with all the treatments. My treatments would start with an abhyanga everyday. Hindu chants played in the background as they doused me in a customized hot oil, infused with herbs specifically for my condition. I’m talking from head to toe. Covered in this amazing oil and it is glorious! They would massage me simultaneously in unison - working the medicinal oil into my muscles and joints, their touch and movements in perfect sync. Every move aimed to stimulate the release of toxins throughout my body. Then they’d take these boluses of warm herbs, again specifically customized for me, and rub them rigorously everywhere, opening the pores and driving the herbs and oil even deeper. These treatments would last for, oh I don’t know, two hours maybe? Seems like I’m bragging, right? Well I am.
After the abhyanga, I would do additional treatments that involved steaming or lying under these crystals that aligned my chakras. Yes, my chakras needed alignment. I’m not kidding, my energy flow was all out of whack. Then came the basti. When you hear the word basti, you may think it’s something cute and sweet. Like a tiny, rare, tropical bird. Or a term of endearment. Or like a pastel-colored scooter that’s not a Vespa.
A basti is an enema.
So it’s probably very clear at this point that Panchakarma is about elimination. The diet, internal oleation (the ghee butter, etc.) during home prep, the external oleation (abhyanga) during Panchakarma, the steaming, the bastis - every aspect of Panchakarma aims to loosen toxins throughout your body so that you can eliminate them. And you do. Yes you do. It is crazy how much there is to eliminate. Mind-blowing. But the most mind-blowing part of Panchakarma, is the emotional release. In Ayurveda, the toxic residue from lingering anger, sadness, guilt, any of that, can be the most damaging, causing imbalances in the body and eventually… disease.
Every day after the various heavenly treatments (and bastis), we’d end with a shirodhara. I would lie on my back as a thin stream of warm oil flowed over my forehead. For how long, I have no idea, because I was transported somewhere else every time - not necessarily dreams, but memories. And sometimes there was nothing at all. Just peace. Since I was a child, my mind has always been in overdrive. Obsessively thinking, worrying. I still bite my nails. It was during shirodharas that I finally experienced my mind truly quieting for the first time. Either Martha or Sonya would watch over me as my breath deepened. Sonya told me I was experiencing what it was like to transcend. All I know is, that kind of quiet, that stillness, felt like bliss.
I did this for ten days. Some people, depending on their health needs, will do Panchakarma for up to a month or even longer. It does make sense. A child with an overactive mind developed an overactive immune system. On day two, I remembered something I botched when I was ten years old. I was punching pillows - embarrassed, guilty, and afraid. I cried on the table and Martha comforted me and told me to let it go. On day four, I thanked god for Jed. I don’t know who or what I meant by god, but I needed to give thanks for bringing to me what truly matters. By day five the edema in my legs and feet began to disappear. By day six, I finally embraced forgiveness. By day seven, I understood that being sick was not my fault. By day eight, the edema was gone.
On day nine, during shirodhara, I saw myself at fifteen, performing at the Orlando Amphitheater. It happened as I remembered. I watched myself stumbling down the stage ramp and then fall to the ground. Out cold. Only this time, this fifteen year old girl sat up on her own. I approached her and gingerly placed my hand on her shoulder. She turned around and I saw her face. The red rash spanned across her cheeks, along her neck, down her arms, covering her fingertips. But she didn’t seem afraid and she wasn’t in any pain. She looked up at me and smiled. And I knew she was going to be okay.
On day ten, I had hope again.
In Deepak Chopra’s book, PerfectHealth, he says, “The guiding principle of Ayurveda is that the mind exerts the deepest influence on the body, and freedom from sickness depends upon contacting our own awareness, bringing it into balance, and then extending that balance to the body. This state of balanced awareness, more than any kind of physical immunity, creates a higher state of health.”
I meditate every day now. I still eat according to what’s appropriate for my dosha. My doctors have used the word “astounded” when it comes to my progress. Was it a combination of the months of chemotherapy and the Panchakarma that kicked my body back into proper gear? I have no idea. Now that I have Ayurveda in my life, will I ever be able to abandon Western medicine completely? Probably not.
Have I achieved a state of balanced awareness? I’m working on it. I’m working on it.
It’s a never-ending clusterfuck. This thing I have. It rarely leaves me alone. I think that’s the most unsettling part of living with a chronic illness. Some days are fine, other days not so much, and you never know if or when it’s going to strike hard again. Which would provoke a good amount of fear, don’t you think? And living in fear isn’t the most awesome way to pass the time, especially due to the “never-ending” part of it all.
I’ve been trying to figure out why I suddenly stopped writing about the state of things. At the end of November when I realized, on my birthday, that the year I had spent in chemotherapy had possibly been all for naught, I guess I didn’t want to talk about it anymore. I felt defeated, lost, beyond angry. And super annoyed that my birthday was ruined the way a fresh pair of Uggs can be ruined by a fresh pile of Doberman shit.
Being completely open and honest about my health on this blog has been incredibly therapeutic for me, and I’m so grateful that I’ve been able to connect with others who endure similar challenges. But I also wanted my story to be a source of comfort and hope. When I had none to offer, I disappeared... into darkness. And once you’re in that place, it’s hard to imagine being anywhere else.
I didn’t stay there for very long though. I’ve never been able to do that really. I usually go two weeks tops in total despondency until I snap myself out of it. So after snapping out of it (this time around), something good happened. I didn’t tell you about it because, well, there’s the fear factor I live with. I was afraid I’d be speaking too soon, afraid to jinx it in any way, afraid it was all a fluke. But enough time has passed now, almost four months, and this good thing seems to be holding up just fine. Sooo let’s get cozy, this is gonna to be a long one (that’ll come to you in parts).
After being sucker-punched with relapsing edema and lab results that indicated my kidneys were going backwards, I thought, “If the crazy side-effect-ridden Western medicine didn’t get the job done, maybe some crazy alternative-FDA-unapproved Eastern stuff will!" Now there was no way I was going cold turkey on my Western meds, I’m not sure that will ever be a possibility for someone like me, but I wanted to try something in conjunction with the drugs. I decided Ayurvedic medicine was going to be my experiment of choice. In a fairly manic move, I signed up for Transcendental Meditation, a week at The Chopra Center (yes, as in Deepak), and an Ayurvedic cleanse my girlfriends had been telling me about for years called Panchakarma.
Now we all know I’ve been down this road before. Trying this that and the other and coming up with nothing and then tossing it in the “voodoo” files. Which is probably why I just smiled and nodded whenever they told me that I MUST try panchakarma! But now I was desperate, I honestly would’ve tried anything. Though a cleanse did make actual sense. Especially if it meant ridding of all the leftover chemo just sitting in my body apparently doing nothing. So I gave it a shot.
And girrrrl, let me tell you, it ain’t no voodoo. It is old school science. This stuff’s for real. And I fucking went so hardcore with it. Like, Original Gangsta style.
Now I know that doesn’t look very hardcore, it looks more like heavenly spa bliss, but parts of what I’m about to share with you are not very appealing. Or ladylike for that matter. And other parts may cause your brows to furrow in absolute doubt. Please note that I am not claiming to be an expert in any of the following. I’m simply going to tell you what I’ve experienced and… how it has changed my life.
Let’s start here:
AYURVEDA - THE SCIENCE OF LIFE
Ayurveda comes from two Sanskrit root words - Ayus, which means “life,” and Veda, which means “knowledge” or “science.” Ayurveda is the oldest form of preventative medicine and health care on the planet. Over 5000 years old. I told you - old school science. Original. Gangsta.
And my path to Ayurveda kicked off with me crapping my brains out for fourteen days.
See? Not very ladylike right? My husband is so proud of my blog.
I know that sounds like a crazy… load of crap (buh dum bum), but I assure you I was in the hands of an amazing and wise Ayurvedic Therapist. I like to think of her as an angel in the body of a tiny, sometimes feisty, Columbian woman named Martha Soffer. And I’d rather call her a healer than a therapist, because what she has done for me qualifies as a miracle in my somewhat skeptical mind.
Like I do with all prescription drugs and medical procedures thrown my way, I googled Panchakarma until I went cross-eyed. I knew there were dietary changes I had to make, I knew there would be an “elimination” festival, I knew there were massages involved and that the whole thing would be deeply detoxifying, both physically and emotionally, etc. My fearful self made my Type-A self cover all the bases. But I still wasn’t at all prepared for what I was about to experience.
When I first walked into Surya Spa, a cozy sanctuary nestled in the hills of the Pacific Palisades, I was immediately taken by the soothing aroma - a combination of herbs, oils, and insanely delicious ayurvedic cooking. It was like stumbling upon Mother Earth’s kitchen and wanting to eat everything while curling up for a nap at the same time. The aroma alone comforted me and any reservations I had went out the window. I was excited for what was to come. Especially if it meant that whatever was on that stove would end up in my belly at some point.
Then I met Martha. She sat down with me and looked at my swollen legs and feet as I told her about my current lupus nephritis predicament. She checked my pulse, which is one of the ways imbalances in the body are detected in Ayurveda, and instantly knew something was also going on in my neck (cervical spinal stenosis), and in my reproductive system (temporary menopause due to the Lupron).
I soon found myself telling her everything - about my health, my relationships, my past - not because she asked but because I wanted to. She felt my pulse again and shook her head, “Too much fire, too much heat.” I wasn’t sure what she meant at the time, but I knew that I’d always imagined lupus as a fire burning me from the inside out. I cried and kept saying I was tired. I was so tired of being sick and I was afraid… to live like this… forever. She looked at me and said, “You’re going to be okay. I will help you.” And for some reason I believed her right away.
Remember me? It’s been a while. I know it seems as if I’ve toppled off the face of the earth and plummeted into an abyss of silence. Though I’ve posted a few photos and silly videos since my last substantial update on my health (which wasn’t the most uplifting note to leave you with), I have been keeping mum on what’s been going on with me. But I assure you, it’s not because things have taken a turn for the worse and I’m so grateful for your care and concern. I think I just needed some time to step away from everything, mainly to regroup the parts of my brain and my self that were sapped from the whole year in Shitty McSicky Land.
But this is a new year, right? Hell yeah it is. I’m making 2012 my biatch. And it seems to be working. I’m doing much better. I’m not quite out of the woods but I’m much improved. And you know what? It’s all ‘cause of some voodoo… Which I will tell you about, in full detail, very very soon.
For now, I just wanted to let you know that I haven’t forgotten about this here blog o’ mine (because it’s so damn sexy). More importantly, I haven’t forgotten about you.
The Guild Season 5 DVD is now available via Amazon.com, with a release date of December 13, 2011. Picking up where season four left off, season five takes the Guild members out from behind their computers and throws them into the real world like the show has never seen before, with…
Yesterday was my birthday and I have to thank all of you for making it a special one with your wonderful wishes and gifts and love. You kept me smiling throughout the day… despite the crying. Yeah, I did some of that shit yesterday. It was unrestrained and unattractive. With the heaving and the snot and the animals-in-pain type noises. It was the kind of crying that needed to happen apparently. I’ve kept a brave face for the past eight months and I guess yesterday, the brave face needed a break. And a cathartic reboot.
After a very relaxing celebratory weekend in Newport Beach with Jed, I awoke on my actual birthday well aware the first thing on the agenda was a doctor’s appointment. We went together, Jed likes to know every detail of what the new drill is going to be. Oh, did I mention there’s a new drill? ‘Cause there is - the Cytoxan did not work. In fact, it probably stopped working a few months ago. Which is why my edema is coming back…
It seems that since I did Cytoxan six years ago for the brain flare, I have developed non-responsive cells to the drug. So the responsive cells reacted accordingly for the first few treatments, then my other cells, the ones that are too cool for Cytoxan, gave it the big fat finger. To say this predicament is disappointing is an understatement but… it is what it is. Don’t know if I can call this a plateau anymore. It’s more like square fucking one.
That’s all I got - the latest and greatest. Did I want to punch my fist through multiple walls yesterday? Sure, because that would be super badass. But instead I focused on the tower of balloons from my adorable nieces, visits from family and friends, birthday phone calls, texts, chats, tweets and posts on facebook - the day was full of love and support thanks to you and before I knew it my husband was home from work and all was right again.
You name it, I’ve done it. I’m that kind of woman. I’m not afraid to experiment. I’m game for anything even if it seems too crazy. And if I’m not satisfied, I move on to the next “big thing”.
Meditation, hypnosis, emotional freedom technique, shamanic healing, pranic healing, qigong healing, ionic foot baths, infrared saunas, pneumatic compression, acupuncture, acupressure, homeopathy, herbs, colonics, cleanses, enlightened medicinal techniques (whatever that means), and every damn diet imaginable - I’ve done it all.
Wait, what? What did you think I was going to talk about? Pervs…
Despite the tons of drugs Western Medicine has given me over the past 20 years (drugs that have saved my life on a few occasions), there’s a nagging thought in the back of my head that these American pushers have got it all wrong. That what I really need is a NATIVE American to take me to some remote, untouched expanse high in the whatever mountains, strip me of my belongings and prescription medications, and chant by my side while I detox the years of poison and side effects from my body. His many children will rotate who holds my hand for the day, while his wives take turns wiping the sweat from my brow. And when I come out on the other side, all euphoric and unscathed, he and his brothers will do some kind of dance around me, much like a rain dance, but it’s one that promises the evil Lupus spirits have been cast away. For good.
When I told Zack (my bro-in-law) the other day that perhaps I actually need to do something like the above, he said, very plainly, “Please don’t. Don’t do that. That’s not gonna work.”
But how does he know that? And how come I still don’t? I mean, I’ve tried EVERYTHING. I once had this woman who made me lie on my belly on the floor while she put crystals on my back. I would pay her (I’m embarrassed to admit how much) to come to my house and put crystals on my back while she intermittently made these sucking noises through her teeth, which meant god knows what. Maybe she was sucking the malfunctioning cells out of me? She did that for an hour. Once a week. For a few months. After my sixth session with her, I found myself in the hospital three days later. I was exhibiting meningitis-like symptoms because Lupus was inflaming the blood vessels along my spine and my cerebellum. It was a riot. Needless to say, I never called that woman again.
I also went to a blind acupuncturist. You read correctly. A BLIND acupuncturist. I let a man who could not see put needles IN MY FACE because he apparently had a gift and saved people with terminal cancer.
Then came the winner of them all. She was described to me as a yet another person with the gift of healing but she has some “other world kind of shit going on”. A few years ago, on a dreary, rainy LA day, I skeptically arrived at her house. It was the back house of a back house (is there a name for that?), in a not so great area on a street with shitty parking. So I had to walk a few blocks in the pouring rain while random punks whistled at me from their drunk mom’s porch. And I knew she was drunk because she was sitting out there with a half-consumed 40oz nestled in her lap with an empty 40oz resting by her feet. Or maybe her teenage sons split that one. Because that’s a better scenario, right?
Anyway, I get to the back-back house and an older woman dressed in all purple answered the door. Welcomed me in, she was perfectly kind and everything, but was missing a few front teeth. Hey, some people didn’t grow up flossing, or they ate too many sweets, or they smoked a ton of crack at some point. When it occurred to me that the latter could very well be the case, I thought, you know, she’s moved on to a better life, of healing people. The thing I found most disconcerting was that there was purple everywhere. Purple crystals, purple curtains, purple furniture, purple books. I was assaulted with purple. I was too nervous at this point to ask “Wadup with the purple, yo?” because maybe she would suddenly revert to her defensive former crackhead ways and get all violent on my ass. She then told me to lie on her table while she hovered her hands above me and told me that my “sad little girl inside is still very sad…” I was like, yeah, no shit. She proceeded to hand hover for a little while, just feeling for energy blockages throughout my body, then she warned me that she’s going to make noises that might seem scary but told me not to worry, that means it’s working.
"Scary" does not cut it. It sounded as if a fucking demon was suddenly in the room giving birth to another demon. It was bone-chilling. Thankfully I had an eye mask on so I wasn’t tempted to see the faces she was making along with the noises. If I had taken a peek, I probably would’ve bolted the hell outta there. I’m surprised I didn’t do that anyway. No, I stayed, freaked out on that table for about an hour, and you know what? When she was done, I did feel a little better. Maybe I was just relieved it was over…
The above events are the wackiest of things I’ve tried. I’m not poo-pooing (or doo-dooing) on alternative healing at all. Some techniques have actually helped me here and there. I think the main reason they’ve helped me is because I believed they would. But with every new thing I try, and every new time Lupus sends my body on a self-destructive shit spiral, the less I’m able to believe.
I’m even having a hard time believing in Western medicine recently. Remember that plateau I told you about a while back? Well, I’m still on it. Even with the two additional Cytoxans at 1000 milligrams a pop. I go in for my 8th and final Cytoxan today. If that doesn’t do the trick, then on to Plan B. Whatever that may be. Thankfully, I have the best doctors out there putting their heads together to work on my stubborn ass case of Lupus Nephritis.
There has to be something out there that will magically take this thing away. Maybe it’s time for me to buck up and believe in a man who rose from the dead and now lives in the sky with his dad who looks just like Santa. I mean, he’s totally made many miracles happen, right?
It’s been a rough week… I’ve been holed up in bed mostly. I went with the mind-numbing course of recovery this time around. A combo of procedural drama repeats, random movies starring Matt Damon, and extensive perusal of The Book Of Face. And while perusing the countless pictures of adorable babies my friends just had, I came across a plethora of photos capturing people’s escapades at Burning Man. And I was mesmerized.
All those photos of them, scantily clad in Mad Max-esque outfits, basking in the 107 degree sun, goggles protecting their eyes from the desert sand whipping around them as they pose in front of towering sculptures that they plan to set on fire come nightfall. Behind them you can see rows and rows of a makeshift city made of tents, RVs, and arbitrary structures that extend for miles. With porta potties of course. They like to keep their city clean. They all look so fucking happy, just high on life. And by “life” I mean “multiple hits of Ecstasy”.
Sounds insanely incredible, right?! Like something you absolutely MUST experience. Don’t you wanna rip your clothes off, cover your entire body in whimsical yet hardcore tattoos, hop on the back of Journey’s motorcycle (Journey is the white girl with dreads you met at that dive bar next to the Meditation Center in Atwater Village), and speed down to the Black Rock Desert, only stopping to pee or to do downward dog on the side of the highway?
HELL no. Well I don’t want to anyway. Just even considering the idea gives me a panic attack. First of all, the desert sun alone would kill me. Like, actually kill me. Or give me an outrageous rash. Second, I’ve been on immunosuppressive drugs my whole life so experimenting with recreational drugs has always been out of the question (well maybe I’ve been able to dabble with a few on the mellow end of the spectrum) because it’s just too risky. But who wants to watch majestic pieces of art burn while stone-cold sober? What a total boner killer. And while we’re on the topic of my immunosuppressive drug career, I must highlight that porta potties are not really the best option for me. The germs mixed with the heat? Infection Central. And what about showering? Sure, being covered in sand might be cool for a few hours but I can’t sleep with that shit all over me. Even if you hosed me off there would still be sand all up in places I’d rather not discuss right now. Because they’re private. And I know I already mentioned the heat, but dude, the HEAT. Even if I had an air-conditioned RV, what then? Am I gonna be the one kid doing her own thing, slumped by the window watching the blissed-out mayhem in the distance while popping Prednisone? Come on.
I don’t know. The whole thing just freaks me out. My good friend, Josh, has been going for years and always regales me with Burning Man stories that are so fascinating, sexy, and borderline inconceivable. Every year he gives me the hard sell, trying to convince me to join him, and every year I tell him no. As much as I would love to be that girl - the girl with her boobies out, dancing in the middle of some chant circle, or having intensely intellectual discussions while tripping my balls off, the hard truth is - I can’t. I can’t be that girl. I’ve never been able to be her really. I’d need a complete personality makeover and a body sans Lupus.
Instead I’m the girl whose ass was kicked hard by 1000 mg of Cytoxan on Monday. So I don’t know if I refuse to go to Burning Man because it’s physically impossible for me or because I genuinely don’t want to go. And if I don’t want to go is it only because I’ve grown up afraid of every fucking thing that might make me sick?
I do know that when I travel to exotic places I prefer hotel rooms with air-conditioning. And bathrooms. With the little free toiletries. So I don’t exactly wish I could go on that adventure in the middle of the Black Rock Desert, but I do wish this - I wish I was healthy enough to be allowed to make my own decisions instead of my body making them for me. And that way, I myself could whole-heartedly decide NOT to go to Burning Man.
Things aren’t going quite as planned. Things have obviously improved, which is good, but I’m not where I was expected to be post Cytoxan #6. I’ve basically reached a plateau. A plateau called “Your Kidneys Still No Wanna Work So Good”. Why this plateau has an accent, I have no idea. Maybe because I watched a bit of “I Love Lucy” today. I blame Ricky.
So yeah, the plateau. It’s okay. I’m okay with this. Yesterday I wasn’t as okay with this but that was mostly due to feeling disappointed. And rundown. I had a busy work week leading up to the Lupus Walk, then I had chemo last Monday so I was toast for the week but still managed to accomplish getting some errands done, and then we went to a wedding (a beautiful wedding) in Los Olivos over the weekend. What all that amounts to is I need to calm the fuck down. For real. Somebody slap some sense into me. It’s like as soon as my feet were back to normal size, I plunged into “I’m cured!” mode. My lab results beg to differ.
BUT onwards and upwards as they say. The new plan is two more Cytoxans at a higher dose (700mg per infusion instead of 600mg). We’ve been gentle with me for these past six rounds because I am a fragile creature who can’t tolerate too many side effects. And since we’re doing two additional rounds, the other fun drugs get to come out and play again. Like the Lupron. I have to get another one of those injections which means hot flashes galore! But I’ll take hot flashes over ovarian failure, thank you much. Wouldn’t you?
That’s the new drill. I’m hoping we’ll get a good spike in my labs after #7. ‘Cause this plateau shit is boring and annoying. I’m doing everything I can on my end to help the drug end along. I barely eat any sodium, I’m gluten-free and dairy-free (though I do cheat here and there), and I’m not drinking (okay, maybe sips of wine on special occasions, like at the wedding). I take deep breaths while visualizing healthy cells moving about my body. I’m writing. I’m reading Storm Of Swords and watching good television. I do yoga when I’m feeling up for it. I take walks when I can. I’m trying my best. That’s all I can really do I guess…
I’m looking forward to 2012 when I’m in remission. Because I’m going to be in remission come January dammit. Mark my dirty words.
I consider myself a good Samaritan. I donate to charities. I hold doors for people and let older folks walk before me into elevators and such. If I can tell the girl next to me in the Bloomingdales dressing room is doubting whether or not that dress looks good on her, I’ll tell her she looks beautiful. Because she does. And if she looks ridiculous, I’ll blame the dress. If I see a dog, or any animal, even possums, running aimlessly on the street, I’ll pull over and try to get them to come to me. And if they fiercely object, I’ll at least chase them out of the way of oncoming traffic (don’t tell my mom I do that, she’d freak). But Saturday was my very first “Walk For Anything”. Why I’ve never done that before I have no idea. All those people banding together for a common cause sparked an overwhelmingly joyous feeling I’ve never experienced before. So now I want to walk for everything.
And never mind how the lead up to the big day was already an incredible journey. I can’t thank Nirvana Adams and Amy Smith enough for starting Club Mo in the first place and turning me in to a blubbering idiot because I was so touched and grateful. And then my friends and family joining the team, creating pages that made me cry even more from all their love and support. And then and then and THEN the countless generous people who donated to our team (an unprecedented $75K!) and helped the Lupus Foundation of America surpass their overall goal. They’re almost at $240K and still climbing.
Here are some captured moments of the amazing event!
Me with our beautiful team captains - Amy Smith and Nirvana Adams.
Getting our tent organized. Doesn’t Brian look like a little boy caught with his hand in the cookie jar? Or down his pants?
Look at all the people. Yay for Lupus! I mean Lupus Awareness!
A major bonus to the awesome day was being with my family and friends who I love with all my heart —
This extraordinary woman raised nearly $14K. Of course she did. She’s Felicia Day.
A huge special thank you to Jinx, Kim Evey, Shawna and Joe Trpcic for our t-shirts and BSL Creations for the signs. You guys rock. I must admit it was a bit disconcerting to see a picture of my face on everyone’s chests, but I guess that’s better than a picture of Lupus.
And the walk begins! I was ready to do all three miles but Jed reminded me I should stop at the one mile turnaround. He’s smarter than I am when it comes to my health.
Baby Kellan joined us on the walk!
And so did Tova’s dog, Marlo. He even sported a Club Mo bandanna. I fucking love this picture.
Woman down! Thankfully Joss came to Mila’s rescue.
And after a Walk For Lupus, there’s always a dance party, duh. Thanks to Stuart Gill for these photos. Footage coming soon…
There were a few lovely people who came up to me at the event. Some had just been diagnosed with Lupus and others have family members or friends dealing with this crappy disease. Knowing that this blog is helping you or your loved ones in any way warms my heart beyond comprehension. You inspire me to keep fighting and to keep sharing my story with you. I hope you’re feeling fantastic Tammy!
Club Mo. Never surrender.
To the folks I had never met till that day, to those who traveled in from different states, to the fabulous ladies of Whedonopolis, to my family and friends who I hold so dear, and to all of you who donated - an endless amount of heartfelt thanks. I am so moved by your kindness, generosity and love. In these past few months you have helped me turn this rough road into a wonderful ride. And for that, I am forever grateful.
I have absolutely no reason to be thinking about such things. It’s been a good day. My Aunt came to visit, she brought me a bunch of goodies, I wore my new pair of Run Tones (which are basically Shape Ups) on our walk around the neighborhood (yes, I am now the proud owner of sneakers that promise to tone my calves and buttocks), it was gorgeous out, I didn’t feel terrible at all considering I did Cytoxan a few days ago, and apparently I don’t look like a person who does chemotherapy on a regular basis. I’m a “little pale but not pasty,” according to my friends, Harris and Tova, whose candor I always appreciate and love. They came over for a visit too. Like I said, it’s been a good day.
But alas, here I am. Thinking about such things.
Skin, joints, lungs, brain, kidneys. My lupus has run the fucking gamut. It hit me today that it’s hard to determine which malfunctioning organ has been the most challenging. Each has had it’s own unique “flare”, so to speak. Winky wink. I dealt with the skin stuff mainly during high school. That was not amusing. Having red patches all over me did not have a positive effect on my self esteem that was already inevitably suffering because, oh I don’t know, I was a teenager? When it comes to my joints, that’s something that will come and go for the rest of my life. Just fact. And I’m totally fine with it. Conceptually anyway. When my bones are actually hurting, I do get a little testy. The lung thing was difficult probably because it’s better to be able to breathe. You guys know what I’m talking about. And the brain flare… well, I’ll save that one for later.
If you asked me a few months ago which flare has been the gnarliest, I would’ve screamed KIDNEYS DEFINITELY. But that was when my every day was the same, in a shitty way - wake up at 6am no matter what because of the 40mg of Prednisone, lie there for an hour, mind stuck in a frenetic haze of ten million thoughts and concerns, get up the courage for compression stockings, wince while putting them on, make breakfast in order to down the monstrous amount of medication, stockings now have to come off in order to shower, the feet and knees swell even more from the heat of the water so I sit down on my shower stool, stress over the fact I even need a shower stool, hobble out of the shower, spend twenty minutes lying on my back with my feet propped up against the wall, wait for the swelling to subside enough to get myself back in those stockings. And all that, just to stay in for the day. Never mind what needed to happen in order for me to venture out into the world…
It’s very easy to forget. To become consumed once again with the silly little things. Things that never crossed my mind when I could barely move because my feet were looking like this. WARNING: You might gasp or cringe at the following. It’s okay, I still do.
Pretty fuckin’ wild, right? It was kinda fun to break these puppies out in social situations. Who knew pitting edema would be my cool party trick?
Anyway, my feet are fine now as you saw in my previous post. I’m able to wear my absurdly large assortment of shoes once again. I’m feeling like my normal self which does make it hard to resist my turbocharger tendencies. Thankfully I have Jed to rein me in when I try to run about town like a total healthy person. There are many other reasons to be thankful for that guy, so many I have to pinch myself. I know, I know - barf.
Maybe I started thinking about all my flares tonight because I needed a reminder. Of where I was not too long ago. Where it all began, at fifteen. I’ve lived with this damned illness for a long time but it’s never stopped me from doing the things I love to do. And given my history, I know it may rear it’s ugly head again. But I can’t live in fear of that happening, I just have to live. Enjoy the healthier times, like I am now. Be beyond grateful for the progress I’m making every day. And trust that I’ll beat whatever comes my way. As I’ve done before, over and again.
This season of The Guild is so damn good I can’t take it. Hope you’re watching. If not, you’re missing out on some great story and belly laughs. The cast is rocking it. Such fine Thesps! I’m a big fat fan.
I’m all up on THE GUILD (click it - I realized some people aren’t aware that the underlined texts are links). I had a blast getting to play with all the awesome people I adore on the show and in real life. Thankfully, I was able to shoot this right before my kidneys went kaput. I think a week after working on the show, my doctors told me I had to go in for the kidney biopsy. So phew. Got it done before the shit hit the fan. It all worked out! Hope you dig it. More to come! And how smokin’ does Amy Okuda look in her Slave Lea outfit? Yowie zowie, right?
The ice pack on my head helps to limit the blood circulation in my scalp during the infusion to prevent the drug from tampering with my follicles, therefore reducing hair loss. Does it actually work? According to my clogged shower drain, no, but I do it any way because I want to hold on to as much hair as possible. Even if just in wishful thinking.
The lollipop I’m devouring helps to mask the horrendous taste of the crappy drug flowing through my veins. I blow through about three of them every time. Unless I fall asleep, as I should have today, because damn! I’m looking haggard as all hell, yo! But I guess that comes with the territory. Of chemotherapy. I should cut myself some slack. Am I right, ladies? As Cindy Crawford once said, “Even I don’t wake up looking like Cindy Crawford.” (I will never wake up looking like Cindy Crawford as I come from a land very far away from the land that she comes from. Regardless, I get what good ol’ Cin - yes I call her Cin, or The Crawster - is talking about. I’ve had some not so flattering days recently. But again, cutting myself some slack. I’m kinda going through some shit.)
And last but not least, the needle in my arm is pumping me full of Cytoxan #4. Man alive, these infusions are harder on me each time. But it’s not like I wasn’t prepared for it, my doc warned me from the get-go that the effects of the drug are cumulative. So with every Cytoxan, the side effects will intensify. Thankfully, if all goes according to plan, I’ll only have to do two more. Fingers crossed that stays the case.
But it’s all working. My kidneys are improving. I’m moving in the right direction, a little too turtle-like for my taste, but it is progress. I have fairly normal feet now which means I can burn the cane. Backyard bonfire! Good times! AND I’m allowed to have a “normal protein intake” now which means, hello? Wagyu steaks for lunch and dinner please? Thanks much. So that’s also good times.
There are many other good times happening right now in work and life in general but I’ll tell you later because I’m starting to fade while typing this. One huge thing keeping my heart happy is the incredible amount we’ve raised for WALK FOR LUPUS NOW. Endless thanks to the team, Club Mo, and to each and every one of you for donating. Every time I check that money thermometer thingy, my jaw drops. I believe we’re over 26K today. It’s insane! In the best way ever.
So despite feeling like ass, I’m still smiling. Because of you. Thank you very much for rocking my world like you do.