People have been asking me for a health update. I've been meaning to write it but so much has been happening creatively and energetically, I've been procrastinating. I mean, who wants to talk about her brain tumor when there are so many other exciting things to do? Seriously.
But it's time. Mostly because I think I've spoken to enough doctors and reiterated the information to enough family members and close friends that I'm actually capable of writing an intelligent update at this point. A week ago, not so much. Who knew that I would someday speak fluent medical-ese?
To get you caught up.
I suffered a seizure almost a month ago when I was home alone. I had stayed up way too late, been working way too hard, and I've been really stressed for over six months now. The seizure, head trauma and resulting swelling caused two mild seizures (for which I was concious) a few days later, the day Boyfriend took me to the ER. A CT scan in the ER revealed that I have a fairly good-sized brain tumor in the right temporal lobe of my brain. I was informed by the ER doc that what I had experienced, both unconsiously and consciously were in fact seizures. I was immediately admitted to the hospital for a week of tests and observation.
What the doctors are saying.
7 out of 8 of my western doctors* agree on the the basics of my situation: The combination of the tumor's presence and my stress level caused the first seizure. The sample taken from my biopsy, the size of the tumor, and my PET scan all indicate the tumor is slow-growing, low-grade, not aggressive, not metabolizing sugar, and only 10% of the cells are reproducing. Surgery and radiation aren't worth the risk at this time. Unless the tumor appears to grow or become more aggressive, it can be monitored very well with MRIs every two months. Oral chemo may shrink the tumor, but there's certainly enough time to feel out more options; there's no rush. All eight doctors do agree that I need to talk to specialists for more information and continue taking Keppra to prevent another seizure. I'm an otherwise healthy 32-year-old woman with a brain tumor.
*The eighth doctor believes that it was solely the brain tumor's presence that caused my seizure. But I KNOW how over-tired and stressed out I've been, so if I get a vote, I'm with the other seven.
What I'm doing for now.
I intend to follow up with the referrals to specialists by my doctors, and whatever tests and MRIs would allow me and my doctors to monitor the tumor. I am staying on the anti-seizure meds for now - my mind has become much clearer over the last week, although I still have to be careful not to try to do too much in any given day.
I have heard many good things about the oral chemo regimen, but will need to do my own research prior to signing on for the ingestion of 2 years worth of chemicals. I've been told that some people have all of the adverse reactions and none of the benefits; some are helped remarkably and have no nausea or side effects.
I've long been a student of metaphysics and alternative therapies, so pursuing alternative and mind-body medicine to treat my condition is an obvious route. I've spoken with many of my metaphysical friends and holistic health care providers for their ideas, support, and energy work. I've been doing some energy work with a magnificent shaman to whom I've just been introduced but have heard about for many months. He has given me homework to do - homework that I've intended to do for a long time anyway, but am now hyper-compelled to do, since being notified that I have a brain tumor. There are no accidents.
I will also be managing my health nutritionally, taking supplements and eating food with anti-cancer and tumor-fighting properties. Most of you know that I lead a fairly healthy lifestyle and eat really healthy anyway. I'll be consulting a nutritionist friend and this book to amp up my nutrition even further. Since my diagnosis I've been craving even more raw, fresh fruits and veggies than normal, so I'm thinking my body already has a good sense of what to do.
I've been doing my energy work, meditation and yoga practice daily. Sometimes I'm joined by Kitty and Boyfriend and it's good to have (even more) support! I've been working less, relaxing more, and writing, writing, writing. I've been allowing myself to breathe and do what I love, and it's resulting in an increased level of synchronicity in my life! Amazing new contacts, dear old friends and fabulous opportunities abound!
Next week I'm headed to Denver to stay with friends for the 2+ weeks Boyfriend will be sailing in New Zealand. I'll be relaxing with friends, both human and equine, and meeting with some healers there.
The picture at right shows the tuber's progression over the last 20 days. My hard work is paying off - you can see that that it's shriveled to a mere raisin of its former, tubular self.
I'd been lying awake for hours, head pounding, mind spinning, neck screaming, when I decided I should just get up and start writing.
Positivity is eluding me right now. To say that I'm terrified would be a severe understatement. While I know I'm supposed to be kicking ass on this tumor, I'm allowing it to consume me while I bury my head in a giant pile of debt.
I need a sign that everything is going to be okay. I need the universe to show me, unquestionably, that it's going to be okay. NOW.
Yesterday morning, I had no intention of posting this. I was in a dark place, unsure of myself and my abilities. I only wrote this down because I needed to get these thoughts out of my head and put my needs out to the universe. I often advise my brother to do the same, to write down his thoughts, his needs whenever he struggles with something. So as lay awake staring at the ceiling this morning, I could hear his voice, saying, "Write it down! Mock it up!"
[Thanks, Little Brother.]
I most definitely received my UNQUESTIONABLE sign in my email inbox last evening:
Hi Lisa, I was referred to your site by a friend of a friend of yours, and am in awe of the beauty of your writing, especially with what is going on with you right now. I was wondering if you would be interested in being interviewed for a documentary film project I am working on, you can check it out at www.thelivedexperience.com. Your story (actually more so the way you choose to live your life) touched me very deeply, sending you much love! Kate
Meeting Kate like this, reading her encouraging words, and discovering her fascinating project renewed me with certainty.
Everything's going to be okay.
You deserved to know. Because you deserve to try it, and reap the benefits. What does the universe need to know right now? Write it down. Mock it up! (In the comments, please!)
It's true what they say. That what you put out into the universe, you will get back. I know this, but had never had it confirmed so profoundly as when I was in the hospital a couple of weeks ago. The nurses and doctors at Goleta's and Santa Barbara's Cottage Hospital overwhelmed me with kindness - the kindness of strangers. But after four days of observation, I noticed it wasn't like that with everyone. Despite my pretty scary news, I was doing my best to take everything in stride, treating everyone with kindness and a smile. And getting it absolutely reflected back at me.
But some of the patients I came across in the hospital weren't in the same place. They were grumpy and sour with the nurses, doctors, even their loved ones. And unfortunately, it stifled everyone's attitude, which I have to imagine was a detriment to their own health.
So even now, while I struggle with what to do about my finances, I realize that there is nothing more powerful than your own attitude and positive energy in affecting your own health. Change your mind, change your health.
I actually intended to write this post as soon as I got home from the hospital, but there were so many things to write about, and I kept putting it off, not wanting it to get lost in the shuffle. I knew I had to be sure to give it proper thought and attention. And now, two weeks have passed since my hospital stay, and I have even more for which to be grateful, even more about which to write. Thank goodness for publishing delays!
The first person to ever ask me about my state of mind was Boyfriend, when I met him about two years ago. It was a question followed by nothing short of a most profound discussion on the importance of one's state of mind at all times. It has been a topic of discussion many times since - the importance of our state of mind, our level of happiness, through all things.
The next person to address my state of mind would be my very dear new doctor, Dr. G. I never expected my western doctor to come at me with a bit of mind-body medicine, but he wholly, happily surprised me by telling me that one of the most important factors to my condition was my state of mind.
My current state of mind: I'm still happy and crazy-positive. I'm excited about everything I'm going to learn from this. Sadly, my anti-seizure medication is fogging me out. I'm conciously not at full capicity. If I only had a (whole) brain! I have thoughts that I can't express cohesively through keyboard or pen. I forget what I'm doing halfway through a task. Writing, talking, of course, are exhausting right now, but I want so desperately to keep everyone up on everything - on my state of mind.
My doctors have informed me that my body and mind will start to work around the medication better after a period of time, and I won't feel so scattered. So I'm giving it time, letting myself rest and adjust. The fog will clear.
Busy day yesterday, everyone - sorry I didn't get to update. I have nothing but good news to report. I have a to-do list as long as my arm, but I'm going to start with my writing, because it makes me happy.
I had a meeting with my wonderful new oncologist yesterday, Dr. G. Here are the facts: The biopsy results show that the tumor is fairly low grade, appears mostly benign, and is fairly slow growing, due to it's size and the fact that I'm mostly unaffected by its presence. The size - about 3cm in diameter by 6cm in length, about the size of not one, but two golf balls. I've included the picture of this delicious tuber, for comparison. And it's apparently been there a long time, because if it had shown up any more quickly, my brain would not have room to function, due to the tumor's size. The seizures were most likely brought on my recent work and stress levels (who, me?), which lower a person's "seizure threshhold". Good thing for overwork, or I still may not know about this. Gift upon gift...
I was truly expecting these western-medicine-types to grab me by the arm, and start hyperventilating, "We have to do something NOW - we must remove this foreign mass from your HEAD - it doesn't belong, and it must be eradicated!" I knew going in that I wasn't overly open to going in after it, invasively or chemically. I figured it got there without anyone's help, I probably needed to reflect on that a bit, and figure out how to begin asking it to leave on my own.
But Dr. G's outlook is relaxed and extremely encouraging, if unexpected. He wants to run more tests, but is recommending no treatment at this time, due to the basic fact that the I'm essentially healthy and normal and unaffected by the tumor right now, and doing anything could prove worse than leaving it alone. PERFECT. My thoughts exactly, previous to even having met him. And I'm very much into going with how I feel on this, much like I run the rest of my life. So the bottom line is, I'm going to observe, research, explore and take the time I need to figure out what, if anything to do. No urgency required. A new philosophy indeed.
In response to my comments about life feeling more hopeful, things seeming more beautiful than ever, I got this from a friend in Denver yesterday:
"It is like Einstein said, paraphrased: There are two ways to live, as if nothing is a miracle, or as if everything is. I, personally, am on the miracle side. I think a big life event like this amplifies your beliefs, either in miracles, or in the lack thereof."
Keep the humor, people. What could be more hilariously dramatic than manifesting my very own non-operable brain tumor? You have to laugh at what life hands you. Especially when you know you've just handed it to yourself.
And I laugh because what might seem to most to be an apparent tragedy, is nothing less than an extraordinary gift to me. But most of all I wish I could give you a taste of how I feel right now - an exhilarating, heightened awareness of love and positivity in my life. A renewed sense that nothing really matters, but suddenly everything does. I have all the time in the world, but so much to do and learn, and I can't wait. What more do I have but time right now? To learn about unbounded love, positive energy, peace and the gifts of life and love. I've wanted this for so long, and now, everything is mine.
I'm astounded by the volume of email, the amount of love and positive energy I'm receiving. Ask and you shall receive, I suppose. I haven't had a chance to get back to even a few of the emails yet, and I apologize, but know that I'm receiving it and taking it all in. So I'm going to make one more request - I want you to read the story below with an open mind, and an open heart. I want you to leave comments on this website, if you have any, because I want everyone who comes here to have access to the love and positive thoughts I'm receiving.So PLEASE leave your words here.
I intend to write more tomorrow. I met some fascinating people on Saturday, and I can't wait to share that story with you. I also have an appointment with an oncologist to look at the results of my biopsy tomorrow and I'll keep you all posted.
I received this story from some friends after I got home this week. Enjoy with loved ones. Leave comments if you are so moved. I love you all.
"I have heard about three Chinese mystics. Nobody knows their names. They were known only as the 'Three Laughing Monks', because they never did anything else; they simply laughed. They moved from one town to another, laughing. They would stand in the market place and have a good belly laugh. The whole market-place would surround them. All the people would come, shops would close and customers would forget for what they had come. These three people were really beautiful -- laughing and their bellies waving. And then it would become an infection and others would start laughing. Then the whole market-place would laugh. They had changed the quality of the market. And if somebody would say, 'Say some thing to us,' they would say, 'We have nothing to say. We simply laugh and change the quality.' When just a few moments before, it was an ugly place where people were thinking only of money -- hankering for money, greedy, money the only milieu around -- suddenly these three mad people came and they laughed, and changed the quality of the whole market-place. Now nobody was a customer. Now they had forgotten that they had come to purchase and sell. Nobody bothered about greed. They were laughing and they were dancing around these three mad people. For a few seconds a new world opened. They moved all over China, from place to place, from village to village, just helping people to laugh. Sad people, angry people, greedy people, jealous people: they all started laughing with them. And many felt the key -- you can transform. Then, in one village it happened that one of the three died. Village people gathered and they said, 'Now there will be trouble. Now we have to see how they laugh. Their friend has died; they must weep.' But when they came, the two were dancing, laughing and celebrating the death. The village people said, 'Now this is too much. This is unmannerly. When a man is dead it is profane to laugh and dance.' They said, 'You don't know what has happened! All three of us were always thinking of who was going to die first. This man has won; we are defeated. The whole life we laughed with him. How can we give him the last send off with anything else? -- we have to laugh, we have to enjoy, we have to celebrate. This is the only farewell that is possible for the man who has laughed his whole life. And if we don't laugh, he will laugh at us and he will think, "You fools! So you have fallen again into the trap?" We don't see that he is dead. How can laughter die, how can life die?' Laughter is eternal, life is eternal, celebration continues. Actors change but the drama continues. Waves change but the ocean continues. You laugh, you change and somebody else laughs, but laughter continues. You celebrate, somebody else celebrates, but celebration continues. Existence is continuous, it is a container. There is not a single moment's gap in it. But the village people could not understand and they could not participate in the laughter this day. Then the body was to be burned, and the village people said, 'We will give him a bath as the ritual prescribes.' But those two friends said, 'No, our friend has said, "Don't perform any ritual and don't change my clothes and don't give me a bath. You just put me as I am on the burning pyre." So we have to follow his instructions.' And then, suddenly, there was a great happening. When the body was put on the fire, that old man had played the last trick. He had hidden many fireworks under his clothes, and suddenly there was diwali! Then the whole village started laughing. These two mad friends were dancing, then the whole village started dancing. It was not a death, it was a new life. No death is death, because every death opens a new door -- it is a beginning. There is no end to life, there is always a new beginning, a resurrection. If you change your sadness to celebration, then you will also be capable of changing your death into resurrection. So learn the art while there is still time. Don't let death come before you have learned the secret alchemy of changing baser metals into higher metals. Because if you can change sadness, you can change death. If you can be celebrating unconditionally, when death comes you will be able to laugh, you will be able to celebrate, you will go happy. And when you can go celebrating, death cannot kill you. Rather, on the contrary you have killed death. But start it, give it a try. There is nothing to lose. But people are so foolish that even when there is nothing to lose, they won't give it a try. What is there to lose? If you are sad, then I say celebrate, dance, sing. What are you to lose? At the most, sadness will be lost, nothing else. But you think it is impossible. And the very idea that it is impossible will not allow you to give it a try. And I say it is one of the most easy things in the world, because energy is neutral. The same energy becomes sadness; the same energy becomes anger; the same energy becomes sexuality; the same energy becomes com passion; the same energy becomes meditation. Energy is one. You don't have many types of energies. You don't have many separate pockets of energy where this energy is labelled 'sadness' and this energy is labelled 'happiness'. Energies are not pigeon-holed, they are not separated. There exists no watertight compartment in you. You are simply one. This one energy becomes sadness, this one energy becomes anger. It is up to you. One has to learn the secret, the art of how to transform energies. You simply give a direction and the same energy starts moving. And when there is a possibility of transforming anger into bliss, greed into compassion, jealousy into love... you don't know what you are losing. You don't know what you are missing. You are missing the whole point of being here in this universe. Give it a try." OSHO: Yoga, The Alpha and the Omega, Vol. 4
Dr. C, Lisa's neurosurgeon, reported back just after her biopsy: she had no hemorrhaging and doing fine. It looked like the very initial pathology suggested the tumor is not malignant, and there are neurosurgeons who may consider at least part of it operable. Her neurologist's bedside checkup was all normal. And she is all smiles. We'll find out more from the formal pathology report on Monday.
Some of the facts: She has a golf ball sized tumor in her right temporal lobe. Her fall Friday was most likely caused by a seizure brought on by inflammation in the right side of her brain. That seems under control with anti-seizure and anti-inflammatory medication.
She can not drive for at least six months. And of course we're going to limit what we do to lessen injuries if she has another seizure. She will most likely need anti-seizure meds for the rest of her life.
Today we woke up to birds singing, the neighbor dog barking, and the almost overpowering aroma of flowers. We've had about 14 hours of sleep, and breakfast on the screen-porch where she said: "Everything is different now. I don't know how to describe it.... The air smells fresher, birds sound better, and I feel so much love and happiness. More love and happiness than I've ever felt."
Email written by Eric while Lisa was in surgery, sent at home Friday:
As some of you may know, Lisa had a fall sometime Friday night. After taking her to the ER at Cottage Hospital on Monday for a severe persistent headache, a CT scan revealed abnormal swelling in the right side of her brain. She had two minor seizures Monday, but with anti-swelling and seizure medications her headache went away and seizures stopped but she spent the night in the ICU due to the risk.
An MRI Tuesday morning revealed a roughly golf ball size tumor in her right temporal lobe. The neurosurgeon's opinion was that it is non-operable due to the size and location.
The next step, which we're taking as I write this, is a biopsy to determine just what it is, how aggressive it is, etc.
So you know, Lisa and I are fine. Of course we would like this to work out in a positive way. But on the other hand, we know it may not. The most important thing is that we are positive and happy - actually have never been happier. That may seem odd, but we do have a choice in how we think and we would both prefer to be happy and positive with any time we have here together or otherwise.
We have in fact both cried, but I think for the most part, it has been due to being overwhelmed by the outpouring of love and kindness from everyone from loved ones to total strangers.
Of course, pray for her if that helps you, but whatever you do, keep her in your thoughts. In general, keep others in your thoughts - what you give is generally returned many fold.
I'll update more when I can, [please see www.girlbert.com for updates etc.] Love, Eric & Lisa
Maybe you thought I only did birthday tribute letters for horses. And only really old ones, at that.
Fear not little brother, your big day is here, and it's kind of like any other day, isn't it? Full of the unknown, yes, but full of hope and happiness that you create. Only you're taking it more seriously because you've reached some milestone that gives you a sense of urgency about your life. Be grateful for this heighened sense of needing-to-accomplish-something-now, I know I'm so grateful for series of changes that have occurred in my life since reaching 30. I spent my 20s unhappily sitting on my hands. But not you - I'm astounded at all that you've checked off your "bucket list" in your 20s. Your 20s.
Not that it should be about getting a certain number of things done by a certain point in time. I may have a different perspective than most, having just completely turned my life upside-down and reinvented myself in the last year and a half, but I think this philosophy deserves some thought. How is the quality of your life, when viewed through no one's eyes but your own? Life is about about the constant attainment of knowledge and evolving as a person - not what you can tick off a list in a day, a month, or a year.
If I were in London with you, I would risk an enormous bout of constipation just to party with my little brother. We could go to Stonehenge together, talking about American politics, UFO's and Dooce the whole way. Then we'd get get all "Gay and Away", hop a plane to Italy and go have gelato with the Pope. Maybe I'd fall in love with some Tuscan estate and stay, all Diane-Lane-like. You never know with me. But you could stay with me as long as you wanted.
But since I'm so tight on cash, I spent more time picturing you here, showing you around this place I now call home - California. I would take you to the beach, so you could soak in the Pacific Ocean's goodness and I could practice skipping rocks. We'd go to lunch at that crazy little Mexican place we found last time you were here (because they were open on Mondays!) because I know how you're missing Mexican food. Boyfriend and I would take you sailing out of the Santa Barbara harbor. I would make us this delicious Italian dish for dinner, and we'd drink lots of Italian wine. I'd make you any dessert you wanted or I'd even get Hostess cupcakes and those little candles and we'd sing you happy birthday. Then we'd stay up all night, singing and playing the guitar.
I want you to know that you're one of the bravest, smartest, most inspiring people I know. I'm so lucky we're related. Sometimes I can't believe that I'm lucky enough to call you my brother. Sometimes I'm knocked to the ground by how much we have in common, and how much I can learn about myself via your example. And then I realize maybe you might feel the same way, and it makes we want to be a more shining example of an older sibling for you. I want to share the knowledge I've acquired, what little I might have. I want you to know the peace and wisdom I've found in my 30s. I want to hug you until you know it's all good. I want to make you smile, not because it's your birthday, but because I love you.
Our neighbor stopped by to ask us if we'd like to join him for a hike today. We were, as per our recent M.O., holed up in our office, frantically, tiredly, grouchily working. We hesitated for a moment - we usually go for a hike or a bike ride every other day or so, just to remove ourselves from our desk chairs and give our tired eyes a rest, but we've been a bit lax in our routine. Work seems to have had the upper hand over play lately.
But we decided to go. We took a walk down the Santa Ynez River, just beyond our backyard. We walked right down the middle off it, getting our shoes wet and rinsing off our legs on this hot, how-did-it-get-to-be-summer-already day. We dug rocks out of the riverbed and stood them on end on top of the boulders poking up out of the water, a la Andy Goldsworthy. We skipped rocks, threw sticks for Nickel the Wonder Dog, watched him swim after them, laughed and talked and played. We were refreshed and creatively inspired. It was, gloriously, the perfect thing to do at that moment. As all things spontaneous tend to be.
But we all tend to forget to be in the moment. To forget that the present moment is always perfect. If only we would just enjoy it.
I've long prided myself on listening to what my gut tells me to do. On doing what's best for me and my body in any given moment. But sometimes logic and my head win the battle over intuition, and it's never pretty. Gut feelings and spontaniety triumphed today!
When's the last time you fought the logic in your head and did something spontaneous, only to have it be the PERFECT thing?