So here I am, six months to the week since my diagnosis, and the "wait and see" approach has clearly come to a grinding halt. The tuber is done waiting. My brain, my body, my mind know that something must be done.
To get you caught up:
We returned home from our trip up north on Saturday evening. I have so much to report about my healing, transformative, cathartic week in the San Fransisco area, but that will have to wait for now. I experienced a huge shift while up there, with my tumor behaving nicely, and my body handled the travel, neuro-acupuntcture and visiting with friends with no noticible strain or symptoms.
Until Monday. About midday, I felt a "mini-seizure" (my word for concsious seizure - pins/needles on my left side, ringing ears, metallic taste, etc.) coming on, so I thought I would rest and meditate it away. Normally, 2-3 minutes of meditation and relaxation would take care of it, and it'd be gone. But the discomfort lasted a few hours, and Boyfriend and I put a call into the ninja neurologist. He suggested that we go pick up a prescription for a sedative to stop the seizure, and if no relief in an hour, advised that we go the the hospital for help.
I spent Monday night at Santa Barbara's magnificent Cottage Hospital, not willing to mess around with the seizure that wouldn't go away. My ninja neurologist, oncolologist, other doctors, Boyfriend and I are all working on a plan make it CLEAR to Medi-Cal that I need to pursue treatment NOW. Not whenever they feel like finishing my paperwork and approving me, but NOW. Strongly worded letters have been written, we're expecting a response in a few days to a week. Having me in the hospital under observation and treatment solidifies the urgency of the situation, should any further questions come up (for poor, slow-on-the-uptake Medi-Cal) with regards to the current state of my health.
So that's the short version. I don't have my head even remotely wrapped around treatment options. When I do, I'm sure it will involve flow charts, calendars, and a crazy pictionary-style easel, and there's still a lot of data to collect. My next few baby steps are focused on getting Medi-Cal approval so that I can get in with some neuro-surgeons, neuro-oncologists, and the like, who have seen cases similiar to my own, and will be better able to advise my on my Western options. Complementary therapies remain part of the long-term plan and I will continue the neuro-acupuncture and energy work. I am determined to keep my body and mind as healthy and strong as possible through meditation and nutrition.
Currently the tingles and spasms are still intermittent, so I'll stay put here at Cottage until I'm consistently comfortable - the forced rest and care are certainly good for me, and no better place than my hospital bed to wait out the word on Medi-Cal and weigh the options my various local doctors have to present.
Boyfriend is right by my side, and has been, but for the runs home to get supplies (a girl's gotta have her good shampoo and face cream!) and give Truly some kibble and a snuggle. So we wait, with smiles, love and hope. I'll keep you posted on any changes, I'm hoping for a powerful update soon. As always, positive, healing light and energy help, if you feel inclined to share. Love to you all!
You may recall from my previous post that in addition to all that empowerment I recieved at my last doctor appointment, I also received an increased dosage of my anti-seizure drug, Keppra. At the time of the instruction to increase my dosage by 50%, I thought, "Oh, so I'll be a little more tired, a little more out of it - it's already in my system. No prob."
WRONG! Business as usual for a couple of days and I found myself barely able to move from one horizontal surface in my 900 square-foot house to another.
I used to call it the crazy medicine, but it's turned MEAN. It's certainly doing what it's supposed to be doing - I've been seizure-free for over two weeks.
First came the physical fatigue. Then the hysterical crying. Shakiness. Dizzy spells. Soon I was fighting relentless headaches that had me convinced that my head was going to explode. Blood and brains everywhere, all Quentin Tarantino-style. Really.
My efforts to meditate the pain away, previously successful, were completely useless, nausea-inducing and painfully frustrating. Boyfriend was at a horrified loss, and I didn't know how to express the pain I was in, but to cry harder. I either slept all day and night, or couldn't quiet my mind enough to sleep for a day or two.
Before I realized what was happening, I had no control of my own mind. "That's below the belt, Keppra."
So back to that previous post. The one in which I claimed to have recieved an extra-large helping of empowerment, no extra charge. Shortly after I hit "publish" I must have reached my validation-via-internet quota or something, because my brain turned into a gooey marshmallow and began to ooze out my right ear. And Girlbert and her empowerment were never seen or heard from again.
But WAIT - that's not how the story ends! While I may not have been able to put a sentence together for a while now, much less come up with a witty, insightful post, I am trying to process and document what just happened, if only to truly acknowledge the lesson for myself. So if you will just humor me, I might try to do that right now, albeit with a marshmallow for a brain.
This week made me realize that I've been going about my quest to "Heal Thyself" from not exactly the correct angle. My outlook has been all skewed, so to speak. (My high school geometry teacher, Mr. James, would be sooo proud.) All the health food and juice, kicking my own ass into action and positivity. Boyfriend's repeated suggestions to rest, meditate, STOP WORKING - ignored. "You need to work on your mind, or it doesn't matter how healthy you eat." But I was completely missing the forest for the trees.
Not letting anybody help me, because I was responsible for healing myself. And I would be calling the shots. Seeing as how it was my brain tumor and all. Each good day I had I'd think, "Look at me, I'm going to go in for my next MRI and this stupid tumor will be gone. I'll show them - I don't need ANYBODY." And then the universe uses that moment to show me otherwise. You think you don't need anybody, huh? You think you can do it all by yourself? How about I take away your rationality, bodily function and will to live for a minute. How about then? Bet you need some help now!
The universe always wins. Because I wouldn't have survived the last week (much less the last year) without relying heavily on people who love me and want to help me. So when Boyfriend picked up the inconsolable, lifeless shell of my former, fabulous self off the floor and set it on the couch, emergency-dialed my spiritual guide/channel/healer for a long-distance healing and handed me the phone, I knew better than to resist.
"Hey darlin', what's going on?" Tears of relief ran down my face at the sound of her voice, and before I could reply, she began, "Lose the guilt - everybody WANTS to help you. You're staying on the planet, in your body, because you have a lot to offer in return."
An hour later, I saw a glimpse of myself in the mirror for the first time in over a week as I brushed my teeth. Then I went to bed and slept for 13 hours.
The next morning morning I woke with a headache, but I meditatively karate-chopped it, and it cowered in the corner for the rest of the day. That's right! I might kick you again!
Lesson in progress: I'm nobody without the amazing people I surround myself with. By opening myself to this lesson, I have regained the ability to meditate. I have reopened myself to the endless supply of love, support and positive energy and am realizing how much more power I have to heal. Opportunities to give back are currently presenting themselves as I can handle them, and it feels so good to give!
I have my next two-month MRI tomorrow morning (Tuesday, 9/8/09). I am open to receiving positive, tumor-shriveling energy, starting right now. I can't wait for the amazing results, and I will certainly let you know how hard my (Ninja) Neurologist's jaw hits the floor.
Hello Keppra - I see you, and I plan to match your merciless side affects with kung fu meditation and a little help from my friends. You, too, little tumor.
UPDATE 9/9/09, 2pm:
Yesterday I was turned away from my second two-month MRI because of a miscommunication between doctors, staff and the myriad of patient financial "assistance" programs involved. THE GOOD NEWS IS: I have received authorization for the MRI, and have been rescheduled for 5:30pm this evening - so BONUS tumor-shrinking time for me! I should still be able to have my MRI in hand for the appointment with my Ninja Neurologist tomorrow, so I'll keep you posted on the good news (and jaw-dropping!).
Try as I might, it's impossible to stay calm and relaxed if my partner is anything but.
Boyfriend is struggling to keep his head above water as I've cut back on my work-load (read: he's doing it ALL - did I mention he's a superhero?) He's been working increasingly long hours, juggling our little shoestring-operation by himself as we take on our very first paying web clients. Yesterday, in the heat of some kind of anxiety-fueled frustration, he looked at me and said, "You're just going to have to get it together, because we have to pay our bills."
Note to anyone who ever has to live with someone who has a large tumor in the emotional center of her brain, is on anti-seizure medication that sometimes heightens, or then again sometimes dulls, her senses, and never has never been good with stress, anyway: NEVER tell her that she's "just going to have to get it together." Those words actually cause her brain to go numb, if not melt into a puddle, and greatly increase her risk of seizure.
And it was a doozy. As I was lying in bed, going over the day's many low points, internally wording comebacks at everyone with whom I've ever been pissed, wishing Boyfriend would just LAY off, but feeling terribly GUILTY that I'm no help on our quest for financial stability WHATSOEVER...
Shit. I'm having a seizure. I've given myself a fucking seizure. "Honey, wake up - I'm having a seizure."
Later, I asked him how long it lasted. He thought one to two minutes, but it felt like twenty. Stronger than the last one, and I hadn't even missed any medication. Double shit.
It just so happened that I had an appointment with my neurologist today. I was unreasonably nervous - I hadn't done any of the "homework" he'd given me since my last appointment, six weeks ago: check out treatment options and alternative therapies, get an appointment with a neuro-oncologist for a second opinion. And now I was going to have to tell him that I'd had not one, but two seizures since I saw him last. I felt like the bad kid, having to tell my teacher "the dog ate my homework". Just lame. I pictured my Ninja Neurologist, all disappointed, writing me off, for not doing my part in my own treatment. I pictured myself, begging him not to give up on me. Making 'excuses' for myself, like, "I had so much paperwork to fill out, we have rent and bills to pay, I did a lot of research on raw foods, completely changed my diet, and am working on a divorce-related, patient-financial-assistance stumbling block! Did I mention all the county and state patient assistance paperwork? Wait! Come back!"
Was he disappointed? Maybe a little. Did he threaten to write me off? Nope. Just offered ideas, and words of encouragement, and emphasized the importance of pursuing treatment options. He recognized the validity of my brain-cancer-damsel-in-distress, and swooped to the rescue with rapid-fire solutions:
"The patient assistance programs are so frustrating and slow. I'm going to have you to talk to Swami, one of the social workers here - he's really good - because this needs to change. I can see that you've done all you can and you're not getting anywhere. We need to get you scanned again, but I don't want to order an MRI until you have some financial aid lined up, because I don't want to keep racking up bills for you to worry about. If you're having seizures, that's not good. I'd like to up your dosage a bit - from two pills a day to three." By the time we got to the meds, I was relieved - man, do I hate those damn seizures!
Once I figured out he really was in my corner (AGAIN! Why don't I get that?), kicking some brain tumor and state-funding ass on my behalf, relief washed over me like a delicious shower in a world with an endless supply of water.
So my Ninja Neurologist got me all lined up to talk to my new Swami Social Worker, who was nothing short of amazing. He's the first social worker (in a long list) I've met with who's been empathetic, but savvy and insightful. I'm smiling right now as I think about his encouraging, knowing grin. He actually told me, "You've done everything you can do and should do. You're way ahead of the game - but it's an undignified process. In fact you're standing at the crux of what's happening politically and socially in this country right now. It's ridiculous. It's disgraceful. And you're a living, breathing example of why it needs to change."
I did it. I finished my latest stack of applications and forms. Apparently I'm getting more efficient. I've made myself organizational binders for instant access to all of my frequently requested financial information. Yes, the divorce decree is in there, too. Right at my fingertips, for easy reference. Woo hoo!
To celebrate, Boyfriend and I are going to have a good laugh at ourselves with this clip, aptly called 'Intensive Caring'. Just imagine that Greg is not a lawyer, but a web developer (computer nerd). Enjoy.
Last night my brain turned to me and said, "RELAX. Or have another seizure - your choice."
Oops - I guess she was serious.
I was getting ready for bed around nine o'clock - early for me. Brushing my teeth with the ultra-sonic, and suddenly more than just the toothbrush was vibrating on my left side. I turned the brush off and set it down, spitting as I grabbed the sink with both hands. "Darling?" I called to Boyfriend, "Please come here."
He was right there. "It's happening again, I'm having a seizure. My left arm and leg are vibrating."
"Okay, just breathe. What do you feel?"
I grabbed him and sunk to the floor. "My left side is on pins and needles, tingling. And the sharp noise, like ringing, in my head. And that terrible taste in my mouth."
"Does it feel like before?"
"Yes, but I feel like I'm having a flashback or something, too. I see pictures, I hear music - it seems familiar, but scary and yucky."
"Just breathe. It's all in your mind - slow your mind down. You can control your mind. Tell the vibrating to stop. Tell the sound to stop and the taste to go away."
I did. And it was over.
But I had had another seizure, and it sucked. I had forgotten to take my morning dose of anti-seizure medication. Not the first time, but then I proceeded to have a very active, obligation-ridden, stress-filled day. Another hang-up in an already long overdue project. Tried to plan just how I was going to cram everything into a shortened week, with Boyfriend leaving to sail on Friday morning. Laundry, cleaning house, and a 2-hour bike ride. Wow - certainly a lot for the average person, not to mention a seizure-prone ball of stress who forgot to take her medicine.
I'm now enrolled in 'Taking Care of Yourself 101'. This is the only course I've ever taken where a Type-A personality seems detrimental to the student. Do you think there's a slow class?
I took my dose of Keppra immediately upon waking this morning. Then I used a regular toothbrush to brush my teeth. After juice, I followed Truly's lead, and we took a NAP.
Apparently my brain is serious, so I'm taking this lesson to heart.
I promised a follow-up to the crying, crying and MORE CRYING reference from my previous post, because I thought it was over. And I wrote it, queued it up to post, and the crying, crying and MORE CRYING started up again. So it didn't seem complete.
Boyfriend and I have been going through a rough patch. Things have been tense as we navigate through this chapter of our relationship. You know, the one were I'm weighing all my treatment options, we still have no money, and oh, I'm STILL ON THE CRAZY MEDICINE. That makes me CRAZY.
I fell in love with Boyfriend because he listened, with interest, to what I had to say. About all things. He asked questions, gave me an opportunity to elaborate, whether the subject matter be horse training, metaphysics, relationships, psychic phenomena, past lives, sailing or business law. And despite his scientific background and analytical mind, he considers my thoughts and ideas, as non-concrete as they might be, to be just as valid as his. Being treated in this way has encouraged me to reciprocate, and I've learned a lot. We both have.
He has said from the beginning and many times since, "The most important thing in the world to me is your happiness. Because your happiness is my happiness. Nothing else matters." And I feel the same way - nothing else matters.
That's not to say that we're not REALLY different:
I utilize intuition to guide me through life's decisions, no matter how great, knowing that things will work out the way they're meant to.
Boyfriend prefers comb through all of the available data before reaching a conclusion, so he can feel as though its the safest, most thoroughly tested option.
When plans go awry or things don't turn out the way you expect, I KNOW that I'm just being given an opportunity to learn. I take a deep breath and begin to uncover the lesson.
Boyfriend cites a lack of information and forethought when things don't work out as planned. He regrets the path taken.
I consult with acupuncturists, shamans and healers for physical, mental and emotional care.
Boyfriend consults with doctors, PHDs and professional acquaintances when making personal, business or physical health decisions.
I watch birds and read books on animal behavior or metaphysics (or both!) to relax.
He googles Science Daily or flips through a Scientific American magazine to unwind.
I meditate when stressed.
So Boyfriend and I are pretty much an ongoing episode of Dharma & Greg. (I've included the video for those of you who are lost at the reference or if you'd just like a a giggle!)
To recap last week's episode - Boyfriend and I were back and forth about alternative therapies versus western medicine so many times that my regularly-programmed medication-induced haze, combined with the circular arguments we kept finding ourselves in, nearly beat me senseless. I'm admittedly biased against western medicine, and unfairly so, because I have just recently witnessed its direct benefits. Boyfriend relishes poking holes in poorly written articles regarding alternative therapies and holistic medicine and brandishing the scientific "proof" as definitive when regarding the benefits of modern medicine and technology. Sometimes I take it personally.
I assume I'm going to have to fight with western doctors about my care, but why do I assume that I will have to fight with my Love about it?
So after crying, crying and MORE CRYING, I finally said what I'd been holding back. "I'm afraid that you're not going to be onboard with the choices I make about my health. And I've been afraid of that since Brain Tumor crashed into our lives."
"Honey - you need to do what you need to do regarding your health - it is ultimately your decision - but you have to remember that we're a team and I'm inextricably affected by the result of that decision. I just want you to look at all the data, whether it be in regards to western medicine or alternative therapies, evenly and clearly."
Under the extreme stress of the last few weeks I've somehow forgotten that he's still my partner in all of this, if I would only communicate my needs, my thoughts. Give him something to listen to and ask questions of. But when the communication STOPS, dead in its tracks, coming from one partner, the other doesn't have a lot of choice in continuing, does he?
We spent many LONG days working through it. The cards, and our hearts, are on the table. We've healed from the pain of misunderstanding, confusion, and stress - openness, honesty, flowing communication and most importantly, happiness has returned. Nothing else matters.
Which brings me to my point. My stress level remains entirely too high to expect my body to be capable of healing when it needs that capability the most. Almost immediately following our communication catharsis, my head began to throb as though it were going to explode. The pain increased until my vision was blurry, and I recalled a similar feeling the night I had my seizure, not recalled until this very moment. I described what I was feeling to Boyfriend. I was scared. We were both scared. And in that moment the most important thing became me taking care of myself, or he can't help me when I need it.
Finally the lesson got through, and peaceful rest followed.
I've said it before, but change is in order. No more working away all day at my laptop. I need more sleep, more rest for my body and mind. I need to honor what has just happened with nothing short of a significant change in my routine.
Peace and happiness have become the only pressing items on my to-do list. Nothing else matters.
Yeah, so this is the part where my brother emails me, "What's going on? You never post anymore!"
It's been over a week, I know. Pardon me for wanting to do nothing but curl up and hide away from the world. I've had to dig pretty deep to find direction this week. But after much kicking and screaming, and SO MUCH CRYING, I've recovered myself, intact. We've recovered US, intact. Life has meaning again.
(More on the screaming, CRYING, etc., later. As in, tomorrow.)
My entire week has been dotted with attempts to start blog posts like this:
I started my day with smiles, yoga, and juice. WHAT THE HELL HAPPENED? Followed by blah, blah, blah, about me. And my sad life.
My head is throbbing. I'm dizzy. I have little or no energy. I'm discouraged, because just last week, things were looking so much better. Now I spend most of the day fighting with Boyfriend, fighting with myself. Really makes you want stick around for the end, huh?
I'm struggling to stay physically conscious, much less mentally present, today. Equally uplifting...
But I didn't finish them, because I don't want people coming to this blog to feel sorry for me. I want Girlbert to teach others how to overcome obstacles and do great things. I want Girbert to help me overcome the biggest obstacle of my life. Not to revel in the obstacle, but to get past it. I want to BE GREAT. I've mentioned before that one of my goals is to shock my doctors. I want them to look at me with disbelief when my tumor gets better or goes away. I want to be one of those head-scratching-medical-wonders I've been reading about. I'm no longer content just being the girl with the brain tumor. I'm going to be the girl who kicked that brain tumor's ASS.
The hat was a surprise gift (I can't believe someone actually got me one!) from my childhood (many EONS ago...) friend, Kari. You can get your own, in any number of colors, on Jackie Farry's website. If you want to learn more about Jackie Farry, her hats, the amazing Kris Carr, or how to kick cancer's ASS, rent Crazy Sexy Cancer TODAY. If you know ANYONE who has struggled with or is struggling with cancer, point him/her toward Crazy Sexy Cancer TODAY. That movie changed my life, so by passing it on, maybe I can help someone else be GREAT, too.
Since Brain Tumor (SBT), many people have told me what an inspiration I am. My boyfriend keeps reminding me. I keep rolling my eyes. Because while I'm certainly honored to be able to inspire others, I know I'm not positive all the time. It's been one peak followed by many valleys, then the occasional peak, followed by more valleys. Don't get me wrong, I've witnessed the power of positive energy - and I've been blessed by it's benefits. But I've also spent too much time ridden with guilt. Guilt over feeling as though I'm a burden. Financially and emotionally, on my friends and my family. On Boyfriend. He's seen me cry, cry, and cry some more over the last month, and on my worst days, I worry that the crying alone will bring him to the conclusion that I'm not worth the trouble, no matter how inspiring, amazing, and beautiful I may be on my best days.
Guilt is really the most useless of all feelings. I'm an advocate for feeling what you need to feel, whether it be sadness, anger, or whatever. Let it out. Don't hold it in, or it will eat you alive. First-hand experience has made me wiser than I once was about keeping things to myself. This is easier said than done, because guilt is it's own planet. I've spent entirely too much energy feeling guilty over that which is out of my control. Focusing on my mistakes. Dismissing my accomplishments and the gifts I have to offer. It doesn't do us any good, that guilt. If you have truly done something to warrant feelings of guilt, do something about it, make the wrong a right, and MOVE ON. Most of our feelings of guilt are just assumptions that a we've made someone feel bad, and you know what? That someone can talk to me about it and we can work it out, or he can hold it against me, and it's out of my hands. It's HIS problem, and I can't be responsible for how SOMEONE ELSE feels.
None of us can.
But I can take responsibility for my own happiness. Just like I did almost two years ago, when I decided I needed to come to California. By myself. So I did. And it taught me that if I do the best thing for myself, it will be the best thing for everyone else, too.
As Boyfriend continues to remind me; I have my words, my positive energy and my love. If I can give that, and someone gets something out of it, if someone is inspired to do something nice for someone else, well, that's a pretty big gift for everyone, myself included.
We all have gifts to give. What are yours? Remind yourself. (In the comments, of course!)
I'm one of those, "It's merely a flesh wound!" kind of people. Can't stop. Never give up. Even when I'm hobbling around with a limb missing. Offers of assistance are often countered with, "Nope, I got it!" I suffer from bouts of extreme guilt, worried that I may not deserve what help I do receive. And God forbid I ask for help, even when I've fallen and can't get up.
But I'm changing. Slowly, but surely. I had a breakthrough on the asking-for-help business while in Colorado. My new friend Frances let me help her in her garden for a couple of days in exchange for some herbal advice, essential oils and a plant brushing healing ceremony that we did together while I was at her Frogworks Studio.
"Are we square, Frances?" "Sure we are - you spent two days helping me in the garden." "Don't give too much away, you did a lot for me..." Suddenly, it was like I was talking to myself.
Several people took me aside during my Colorado visit and said, "If you ever need anything, just ask." Apparently lot of people love me and would do anything for me. Huh.
I was crying again. We were on a hike, trying to get some down-time in before we needed to pack for our trips.
Poor Boyfriend. Even I wanted to scream at myself, "Again? With the crying?"
But he hugged me close instead. "It's okay honey, let it out, let it flow."
There's that word again. FLOW.
I know I'm angry. I know I'm repressing my anger. A shaman told me that anger is fire, and fire could be balanced with more water in my life. I need to learn how to flow like water. Take a swim. Watch the river flow. Do my yoga with the intention of flowing like water. Go with the flow.
"So if I'm angry, I can let the tears flow?" "Yes, just feel what you feel. Let it out." "Darn it." "What's wrong?" "My contact just exploded from the crying. Ugh, I can't see..." "Just close your eyes. You don't need them to see - just listen instead."
Suddenly I heard it. The sound of the river flowing beneath us we sat on a rock above the bank. And everything was clearer.
Sometimes a flood of tears is the only way to wash away the flames.