A Year Since, Part I

Part I

It has been a year since I went to St. Anthony’s Hospital at the crack of dawn and had
my skull sawed open, an incredible year in many ways. I survived. That’s the
first thing. I survived and have so much to be thankful for all that’s around
me. I want to review that for my own good, and to clarify that challenges can
be met. The second thing I have to do is to face that in the next six months
or so I’m going to know how far the healing can go, and I’ve already begun to
accept that there are now things that will never go back to the way they were
without a miracle.  Finally, I want to do something with this acceptance
besides sigh, I want to embrace what I can do instead of tripping over the
obstacles again and again.

When I announced that I’d been diagnosed with a brain tumor, a benign meningioma on my left temporal lobe, back in October of 2011, I was rather in shock to be
honest. Giddy almost, I was, that there was really something to blame for the
never-ending headache and messed up phraseology. It wasn’t all-in-my-head, but
really it was something and it could be addressed now! Then I had the challenge of
getting on the right medication to deal with it, and that was a four-month
ordeal I didn’t expect, but like everything in my life, it seems, sort of
slowed down the pace of my impulsive tendency to rush in. I need those slowdowns
to step right up often, and so they seem to do that.

During those four months I received a great deal of support from people all over the
world, and dove deeper into far flung friendships through poetry sharing and
commenting deep into the lonely nights. I so appreciate the willingness of
people I barely knew then to stand by me, even if only in cyberspace, and
listen to my moaning and groaning, cheer me up with good and naughty jokes and
hold my cyber hand. I did not want to visit in person that often with people at
that time. I did not have much vital energy for live chit chat, but I valued
not being totally isolated. What an awesome social web it was, keeping me from
falling into a chasm of despair.

Meanwhile, my family drew in and caught me when I fell and let me cry on their
shoulders when one medication after another turned out to be that list of side
effects they play out at the end of a commercial. The fact is I will never know
if I could have made it through this experience without walking my dog, without
knowing that I was needed by my kids for something or other, without long hugs
through dark nights. They were there and they helped me through, and that is it.

So, the surgery went really well, I still believe, even if it isn’t to this day
perfect. It took four hours. I felt immediately relieved of the grayness that
had been in my head for nearly a decade and was getting very dark up to that
moment. I could count, speak, write, talk, walk and eat. All is well. I went
home in five days. I laid around for a week or two, and took up drawing,
inspired by “My Stroke of Insight,” by Dr. Jill Bolte Taylor, whose
book I read before surgery. I had the notion that if the pressure was off my
left temporal lobe finally, perhaps, that gave my right brain a chance, a chance
to finally get a word or an image into the conversation I have been having with
life.

Five hours after they sawed my skull open...might good hat!

Oh my!

2013 © Amanda Morris Johnson

What I Know That I Didn't Know Before

Is it really August? Six months out from my brain surgery and I sometimes have no idea how to look at my life. I have to say the overarching theme is acceptance, and the undertow is over-doing, but maybe those are just on the surface, maybe underneath those obvious things something else is happening. Am I really different than I was before I was diagnosed with a benign meningioma last October? Yes, I am. No, I am not.

If you’ve been reading this blog or following me on Facebook, you know that I’ve been very prolific in expressing myself through working with oil pastels since March. My interest in doing that goes back before the brain surgery, but then something blocked my ability to accept that my drawing was acceptable. Much of my pre-surgery work is muddied with a question mark about whether or not I’m good at it or whether I should spend so much time playing with it when there are other more important things to accomplish. I would say that after the brain surgery I misplaced the filter that didn’t allow experiment or even a development of concepts and practice time. That filter disappeared nearly completely, though now I am conscious that I must choose to ignore it when it returns, and it does, until hopefully someday it will just be an archived file of used-to-be.

Falling in love with visual art again has opened new doors for me about how I view my future, how my family sees my time and efforts and how I connect with my friends and acquaintances. This is something I’ve been seeking for years! The enjoyment I get from simply sharing my work and seeing how it strikes people’s fancy is immeasurable. Just fills my heart with joy.

Dare I be honest? Of course, honesty, as undoing as it is, is the mission of Kosmic Egg Projects, myself by a company name. Nearly a decade ago I had already reached the end of my love affair with being a “hack” as my father might define me -- a copywriter, a content provider, a writer-for-hire, a copy editor and yet I continued to pursue the work for the pure reason of supporting my family and having some “freedom” to raise my children. More recently, after 20 years as a word-based communicator, I was already having trouble keeping even an ember of interest lit for a business focused on selling things and ideas with words. Before I was diagnosed, I was deeply depressed about losing my way off the creative path that I *really wanted* to be upon even though I enjoyed teaching creative screenwriting more than just about anything else I made myself do for a living. Still, I felt it was fraudulent, since I could no longer make myself write three scenes myself. I could not appreciate that I had anything valuable to share except what I had failed to stick to myself and achieve even though I knew what needed to be done. This obsession leaked into every part of my life before I was diagnosed. Who knows? It may have fed the tumor to begin with, or, perhaps, the tumor was the crime.

Diagnosis of having a brain tumor just exactly on the part of my brain that should be getting things done, that should be writing well was a huge relief. It was like a “get-out-of-jail” card. It opened the possibility that I didn’t have to write anymore. Can you believe someone who has spent thirty years now studying, practicing, working, and teaching writing was so elated to even think, “I may never do it again,” as a good thing? It is true, as much as I wrung my hands over it here. It is true. There was a little elation.

So I have watched this part of my life and wondered, “Am I really allowed to stop?” I mean we have discovered, together, that I can still write. It has nothing to do with the brain or lack thereof, if I choose not to write anymore. Accepting this possibility into my thoughts throws me into a fit, an internal argument about who I am down to my core. I have been a writer. I may not have achieved what I expected to achieve, but that is what I have been for so long that I cannot think of myself without that definition attached like a talking bubble that follows me everywhere. To claim it as my own without disrespecting my effort was the argument before diagnosis, but the idea of stopping and cutting it free, is unbelievably shocking. Almost like the thought of losing a parent or child, it is that close to the heart. Do these things happen? I feel like I must go to the edge of this abyss and decide finally whether I’m going to walk back away from it, or finally jump in with all my heart.

What does that mean? Wait. I am an artist. I draw pictures. There is a future there that makes sense to begin. What is this writing thing? It’s just an old, beat up stone that’s hanging off a cliff now, and I could cut the chain.

Six months out from surgery, I’m recovering. The left side of my face is feeling heat now for the first time in that long. I am taking tango lessons again and re-learning how to walk in my body, to be flexible, to glide, to feel sexy again. I am drawing better and better, and learning about how a picture can be a thousand words. Still, those words...they keep on pulling me until I decide.

The great thing I know now, that I did not know before this brain adventure, is that there is no way to predict the outcome of my decision. I could do everything right and be exactly where I stand today. I could "catch the thread of luminescence" as Oriah Mountain Dreamer calls "The Call" and have a glorious adventure. I only have to decide whether I am curious about what might happen if...

Word. Words?

The Cave

The most difficult thing is to communicate, to explain anything as I am recovering from the removal of my benign meningioma (the brain tumor that was diagnosed in October of 2011). While I may seem to be myself, I really do not feel myself yet...over four months out from surgery. I enjoy being alive and I am experiencing a creative surge that my productivity can barely keep up with, and most of all I am grateful surgery went well and I can still be available to my kids and my husband in the most important and general ways. Yet, there are disconnections and missteps and losses that pop up into my day-to-day existence that cause me to ponder how to really get to recovery that feels 100% beyond the general and that is specifically me, the person I know myself to be.

Moonsight

Writing from the heart is, perhaps, my greatest challenge. I write something over and over again now, that, before this adventure, may have seemed acceptable after one or two tries. My heart feels disconnected from words mostly. I do not know currently if it is because I was blinded to the confusion in my structure and connection before, or whether it is because I will run into a word that I have an idea for but cannot locate in reality, and this is part of recovering. I’m quick to replace those words but often my replacements lead me down another road than I’d intended. This happens in conversation as well, a constant reaching for words that match my ideas and thoughts. I used to have a vocabulary.

Further developing this word replacement in a “benign” way, a way that is constantly entertaining to my kids, my brain seems to work a lot like a smartphone type screen - in that it offers a slew of words that are somewhat similar in spelling and often chooses that word arbitrarily. Spelling or phonetic choice having a higher priority than meaning everytime. I try to catch these words and replace them correctly as soon as I can, but, if you’ve used a smartphone at all, you know that it is a frequent problem to have commented in a way you never intended. Bring that to a conversation. Add another person to the conversation, or a roomful of conversations, or a radio or a television in the background and imagine the brain reaches out and grabs any number of words and spews them into the conversation you’re having with complete disregard to what you’re actually talking about. Yes. I’m a lot of fun. My daughter says with an awesome smile on her face, “Mom, you said that with so much confidence!”



I’m wondering if I’m writing any of this in a way that you can understand, but I’m going ahead and posting it just to see what the response is because maybe I’m the only one that is frustrated. Because this is the other thing, when I try to read this stuff, it is difficult to decipher. It is difficult to decipher an article, a chapter, anything longer than 144 characters. I feel like I should hold my hand and get serious about sitting for an hour reading, but after 10 minutes, I’m lost sometimes. Not always, but sometimes I am simply unable to read. Sometimes a person hands me a business card or an appointment card and I look at it as if it is a picture, waiting for comprehension.

Nature's Balance

All of this word stuff would be driving me even more crazy except for the fact that I feel free, in a way, of the obligation to know everything for once. I have become aware of the weight of my expectations around words. I would like to skip the know-it-all need sometimes. Sometimes I would like to turn my back on the old way, and accept that I’m now primarily a visual person, someone who communicates with icons and symbols. Sometimes.

Then I have an idea for a story, or a letter, a good conversation or a speech and I’m revived in the battle to win my brain back.


2012 (c) Amanda Morris Johnson

Dealing with Discouragement

First Crack at Serious Self-Portrait

There is nothing to be overly discouraged about brain surgery. Honestly, it is a beautiful thing to be able to take care of a tumor, benign or malignant, in one’s head in 21st century America. There’s been vast improvement in the last couple of decades. Since I started talking and writing about the experience I have sensed the need to be open about everything that has happened, if for no other reason than to point to this truth. That statistics point to survival of this surgery at 98% should make this obvious, but the responses ran the gamut from hand-wringing despair to joyful prayer. It is simply hard to imagine opening up the skull and having a decent experience without those prayers, but the techniques and technology are pretty impressive.

This is not to say that discouragement doesn’t exist. Anyone who has read this blog for a while knows well that I have had some real downer moments. It wasn’t so much the surgery itself, but my body’s reaction to some of the preparation, and my mind’s genuine impatience and control freakishness with everything. Now that I’m five weeks out and clearly doing well, I can talk about some of the setbacks I’ve had in recovery without jumping up and down hysterically over them.

An obvious one, to me, is that I’m having a time with writing. I know what I want to write, but getting it out coherently is a real challenge. It’s not the big things. I think that the big, overall ideas are coming out okay, but, sentence-by-sentence, I am recently shocked by how difficult some of them are to read. What I’m used to taking for granted, words flowing out of my brain, I now have to take a step back from and wait for some clarity. It is as if everything I’m writing comes out a bit convoluted, and it horrifies me. I’m sorry about that because in social media, blogging, and poetry I’m used to shooting from the hip.  When I go back and read some response or even a blog, and realize I used the wrong word, or forgot grammar altogether so that the meaning had drained out of the words I got right, or just used to many redundancies, it is discouraging. The time it took to write seemed so blasted long before, that now I am a bit intimidated to start the projects I have in mind until this settles down.

I hope it settles down.

Additionally, I’ll tell you, I’m wondering if this has always been the case (convolution in my writing), in fact. Is it possible that it only just now that I’m becoming aware of it because the obstruction has been taken away? That’s possible. That would explain a lot about my career. That makes my hands sweat, just considering it.

That may be why I'm so happy to be doing visual art instead, and that's not too bad a trade at the moment.

While Cottonwoods Sleep

Then there are the issues of swelling around nerves, facial and tongue numbness paired with pain zapping and dry eye (only one dry eye). They don’t really tell you that in any surgery they’re likely to strike some nerves and push them out of balance one way or another. It happens, and mostly it simply takes some time to heal.

How do nerves heal, you may wonder. Well, I wondered, too, because I figured if I had an idea of how the nerves reset, or heal then I might be able to support the process and feel less worried about it. My research led me in many directions as usual. Perhaps, more importantly, I have cause to simply pay attention to the process unfolding, because some days it really bothers me and some days I forget about it.

So, guess, what? I’m writing about nerves and emotional turns, and it’s going to take me at least a week to put it down straight enough to post comfortably. In the meantime, enjoy the burst of spring this weekend, if it is happening near you, and be truly thankful for your face and tears and even runny allergic noses.

Magnetic Poles Switching Inside

This experience of discovering the benign meningioma, struggling to get ready for it to go, having it removed and then recovering from its absence has been quite a process. For years leading up to the discovery of this tumor, I really was in quite a struggle to understand how my life had gotten so far off course from my dreams, and I had ascertained lots of bits of information about the past, and ideas of how to get back to what I had a will for really pursuing, but I couldn't quite put it together. As I write this, I can see that perhaps my journey is unique, maybe other people can get a grasp onto things much more easily. On the other hand, I also wonder if other people who run into these sort of monumental physical, emotional and mental challenges might be able to use what I've discovered on their own quests, so I'll share a particularly surprising part of this story...

The Sun XIX

A child's mind invents many future potentials, and sifts them as she grows. She sends them out looking for approval, and doesn't realize that approval often comes to the thing she's least interested in. She pursues the least interested future with all her energy because ultimately she desires the approval. The potentials she deeply loves, the ones that involve her so completely that time passes without her knowledge, get branded as distractions from the things she ought to do and so they're put on a shelf display in her head as evidence of bad habits.

At some point in adulthood the shelf falls apart and suddenly those future potentials start a mess in the mind. They play hide in seek with her as it dawns on her that her lack of happiness has something to do with the fact they've gone missing. There are marvelous books by worthy authors that help her find them (CG Jung, Oriah Mountain Dreamer, Julia Cameron, Paul Ferrini, Leo Buscalia, M. Scott Peck MD, off the top of my head). Classes are taken, and yet even when one piece is found and put back on the shelf, others are lost. Therefore, a great swath of time goes to piecework while still giving the most time to those things that get some approval. The battle to actually take some discovery off the shelves of life and to wear them and live in them is already known to gain disapproval, and that is not something she desires.

Because approval has become so important, she is even likely to surround herself with echoing voices of friendships that agree with the approved choices, and that in turn leaves all of those shelved selves exposed to further disapproval. The internal battlefield between the bits of desired denials and the framework of desired approval leaves her frustrated with even having another potential at times, or frustrated with her approving friends and family because they don't see her true desires as worthwhile, except perhaps as a hobby. When the secretly loved potentials make unplanned exposures, her urge to quickly finish them and get them off her mind can lead to self-exhaustion and frizzle-frazzlement.

Am I making any sense?

Last post, I talked a bit about rebellion, and this story I'm outlining is a further exposure of the wrestling I've been doing for almost all my life. For some reason now that I have a flow of water again around the part of my brain that puts things in order, I am able to see that the approval/disapproval war is an old, old habit. I also have the sense that I may actually be experiencing a reversal of that order. Now, I recognize everything that I'm supposed to do for approval from many who have been a lifetime around me, and I am feeling disgusted by it, by my own former behavior, and finding that I simply cannot condone allowing it to remain in the limelight. It comes up daily, moment to moment. As if the magnetic poles of the order within me have switched, my strongest desire is to bring out all of those uncommitted desires and let them be experienced for the rest of my life, whether or not I'm ultimately understood. In turn the modes of operation that attain some sense of comprehension from much of my family  and some of my old friends are being boxed and labeled with things like "taking care of external perfectionism," "the right diet," "beliefs that have nothing to do with me," "rising to expectations," and "buying artificial pleasures."

Meanwhile, as I dust off desires that have been hidden away everyday, more potentials appear. It is as if I've landed on the island of misfit toys and they're all so happy to have me. These desires are not all quite working yet, and I'm not but partially developed on most of them, so I have the sense of practice and experiment. It isn't that I haven't tried all of them once or even often, but simply that now instead of killing myself to get something done and out of the way, I sense I have the opportunity to see what unfolds over time, and that as part of my healing doing it little by little is essential.

Peace, Disneyland and Win-Win Scenarios

Tomorrow I will finally have the benign meningioma, aka little-gray-ball-of-dirty-laundry, in my left temporal lobe area removed. I have been busy all day preparing, and that might seem obvious to some, and mundane to others. This is the thing. How we prepare really matters, I think. 

It's not like I haven't gone to dark places with this episode of the brain tumor. I have. Believe me. I've gone all the way to imagining my death, wondering if there is any reason to stay in this world. One cannot help it maybe when facing the prospect of having one's skull opened up and exposing one's brain to somethings it was never designed for in the first place. I even went to the dark side this week, and then I saw a squirrel gnawing away on a tree branch, and from the looks of the tree branch it looked like it had been doing a lot of gnawing for a while. It's been a bitter cold winter with lots of ice, and if I recall the acorns were not quite as abundant last summer as they've been in other summers because we got our rains late, after the blossoms had come and gone.

So, I thought about preparing for things, and how squirrels seem to get through these times by hook or crook, gnawing trees if they have to do it. I thought about how worried that would make me, and that led me to think about worry and how destructive it has been in my life at times. It causes me to give up sometimes before I've even begun because I might not have thought of something, planned well enough, or hadn't had the resources to thrive. Sure enough all that worrying kept me so stuck that there are times I've made no progress at all for it. But this time is different. I'm having my skull opened up and my brain exposed and I cannot afford it. I cannot afford to worry about any sort of outcomes other than doing really well.

I'll tell you why. I can only plan for one outcome because that's all the energy I have. I'm now on the full course of anti-seizure medication and after years of getting by on six or fewer hours of sleep a night, I'm now sleeping 13 hours a day! I have my kids, my dog and my dear husband counting on me to pull through. I can only plan for the very best. So, that's what I've been preparing for for days, maybe even weeks, and it may seem like I have a screw loose to those who would rather I take the implications of all of this seriously when I laugh giddily and say I feel like "I'm going to Disneyland!" 

In fact, I do feel like I'm going to Disneyland. I've got a good feeling about this surgery. I have studied enough about the brain to know that while my Left Brain is under duress my Right Brain will be given an opportunity to show me another way of seeing things, and that the Right Brain is, well, friendlier, much more like Disneyland in reality than something more serious. I have sent out requests to the ethers. I'd like to communicate with my guides, my angels, my Temple, people who I've missed. I'd like to see what peace feels like for a little bit even. But, even if I just sleep through the whole experience and wake up without a benign meningioma and a funky scar and a really bad haircut, that's okay with me. It's a win-win situation going on here.

I want to take a moment to thank everyone for your support up to this shining moment. I'd like to especially thank my family for their patience with my evolution through the last four and half months. I'm humbled, truly, by everyone's efforts and wisdom and openness to going through this with me. I have a meal train page, if anyone would like to help locally with meals, and I don't know how to get there. I'll try to figure that out next week, because I'll be able to do that. I have one last request: Tomorrow at 9 am - 4 pm MST send tranquil, serene, blue thoughts my way and I'll know what to do with them. THANKS! See you soon!

Picking Up Where We Left Off

Remembering presence has been the work lately. It has been absolutely right for me not to focus so much on the benign meningioma in my skull. After seven weeks of working with a wonderful allergist/immunologist, Dr. Michael Volz, we have induced my body to tolerate the anti-seizure drug, Dilantin, so that I may have surgery. Today I had my blood work done to find out if the medication is at "therapeutic" levels that are acceptable to the neurologist and neurosurgeon in charge of my case. I have a good feeling about it, enough so that I'm willing to share that my surgery is scheduled for a few weeks from now.

What a quest! I have learned so much already. By diverting my attention away from the little-dirty-gray-ball-of-laundry in my skull, I managed to start a few projects that I can imagine picking up again with eager joy as I am recovering from surgery. Yay! This is the smile I was looking for in "Resting in Ambiguity" - knowing that there was something in me that was left to express and be in this world. I felt I had to have some sort of baby to birth, even knowing that the baby would have to be myself. I knew that simply looking forward to recovering from having "Titanium Snowflakes" adhered to my skull was not the fuel of living I count on. Now, I know without a doubt that I have work to do, people to meet and stories to tell, and I'm looking forward to getting there no matter what travails I have to wander through on the way.

If you've read any of my earlier blogs, from say 2010, you will know that I've struggled to come into my life meaningfully. After years of  having the main goal of fixing others around me, and, of course, of course, failing miserably, I had to sit in some "fallow fields" and accept there was nothing to do in that moment. In a sense, my journey with the benign meningioma was already well underway, though I was unaware of it. I had a great deal of fatigue, a constant headache, hearing loss, and a general feeling of malaise and I thought I had spent all of myself already on the failed pursuit of my first marriage, and career misfires. My field was full of rocks and permafrost, and from what I could tell, fully depleted, and all I could do was plant a cover crop of experimental writing that I knew wasn't really going anywhere, just to put some nutrients back in the soil of my life. I have to admit I had doubts that it was working even up unto this fall. Truly it felt like a last ditch effort to save my dreams.

When I had the clarity that actually there was something physically contributing to my sense of hopelessness, it managed to actually pull in my focus, like a closing aperture, to find what it is that I do love about living. Besides my children, my husband, and my dog, I knew there was something else. I admit it. I love writing. But, what I love about writing the most is not what I thought I loved. I saw a PBS special in December about our Poet Laureate 2010-11, W.S. Merwin, and he nailed it: "Poetry expresses what cannot be told." Now, I do believe this is what has interested me about poetry for so long, but I also have seen it in the best films of our age.

The intangible quality of fine art that communicates underneath opaque structures and reaches into our hearts rather than into our minds is what I have always wanted to pursue, and what I have always denied myself by trying to write acceptably, commercially and with the audience in mind. In fact, as a writer I have gone down all the wrong paths for my particular longing. Grin. It's all right. I don't have to wonder anymore whether I could be a social media maven, a content provider extraordinaire or a Rom-Com dudette in Hollywood. I can't seem to pull it off. Those are not in my bag of seeds.

Here we revisit the notion of trust. Can I trust this knowledge and pursue, finally, what I am truly capable of producing? Ah. You may rely on the fact that the question emerges nearly everyday still, and so it is with effort that I hang onto, "Yes," as the answer. Brain surgery is not cheap, nor is having two kids. I struggle with the notion of letting my husband carry this weight while I seem to be namby-pambying around with "creativity" rather than practical pursuits.

It so happens with all the effort I put into trusting that "yes," something has happened. I wrote 78 and more poems since September last year. You may see some of them on Kosmic Egg Tarot, and on Kosmicegg and even still I wonder if I can accomplish anything this way. Then as I was devoting my heart to poetry I realized that even that is not enough for me.  I've taken up landscape photography, oil pastels, co-writing a novel with my daughter, futurism and more. I used to say "more is more," and frankly it was a rebellion against my father's mantra, "less is more," but in the field of creativity it turns out that the more diversely I let my talents express themselves, the healthier the productivity and consistent the flow of ideas is for me.

I have a talent for extrapolation that thrills and entertains people and finally looks like it could be a business in futurism for me. This is funny to me since I had such trouble figuring out my own future for a long while, but like me, the world is sort of in a "fallow field" state with glimmers of hope coming and going with each nation's debt crisis. Indeed having a vision for a prosperous future seems to be a battle for more than just me alone. So, as I'm recovering from brain surgery I now have abundant plans and things to work towards. I don't know for sure that it's all going to work, but I do know that I must have this bridge to my future because fording the river Styx is not so wise if one is keen on remembering presence.

Guest Blogger - The Main Treatments for Benign Meningioma

As discussed on this blog before, brain tumors – even the benign kind – can be a true nightmare.  We decided now would be a good time to discuss a little more about them, including what kind of treatments those with benign tumors can get.

To give you a basic understanding, a benign brain tumor is a group of cells that do not have normal growth or cell division as the rest of the brain cells.  Different from malignant tumors, benign tumors grow slowly and do not invade surrounding tissue or other organs.  They are often characterized by their distinct edges as shown in CT or MRI scans.  However, these kinds of tumors can still pose a danger by pressing on surrounding tissue. 

One of the most common types of treatment for brain tumors is surgery.  This is usually done if the tumor is located where it can be easily accessed and removed with a lower risk of neurological damage.  This option is more likely to happen if there is only one tumor, its edges are clearly defined, and the general health of the patient is good.

The newest treatment for brain tumor removal is called the Gamma Knife.  The name is misleading however, as this process does not involve a knife.  In the procedure, narrow beams of radiation are targeted at the tumor cells in the brain and is done without any incisions or anesthesia.  Done in only one sitting, this is often the treatment recommended for those who have a tumor in a hard to reach place, multiple tumors, or other factors that make surgery risky.

Radiation therapy is the last type of treatment someone with a benign tumor may experience.  In some cases, as in smaller tumors, radiation may be the only method of treatment needed.   Radiation therapy can also be used as a follow up to brain surgery if some of the tumor still remains even if the cells are microscopic.  Unlike the Gamma Knife, radiation therapy is often done more than once and usually for weeks at a time.  Because radiation therapy works by stopping the tumors ability to reproduce, it usually takes a while for the results to be seen.  A CT or MRI scan is usually ordered about three months after radiation to see how successful it was.

Casey Roberts is a student and also writes for http://www.radiologyassistant.org/ which helps students find the right radiology degree.

Finding a State of Grace

My understanding about this tumor, this benign meningioma, has been forced to expand because of all of the delays in getting it out. At the beginning it seemed so simple. Have surgery and recover. Now, adrift in waiting and wonder, I feel compelled to lighten up and get over the fact that someday I’ll have brain surgery. Yet, it hasn’t been that easy to forget about it because it changes my life day-to-day. Since my modus operando is often thinking and figuring, and I know like I know that all of this thinking and figuring actually keeps me in a state of non-action, I also called on my friend Rose last week to be my sounding board. Rose is all about grounding in the body’s knowledge and I have always experienced exquisite peace when I’m around her, even when I was very frustrated otherwise.

Rose suggested that I find a yoga class, specifically restorative yoga, and thankfully the word “relax” didn’t escape into her cell phone. We had a great conversation for several hours in which I told her about Native American legend that I’ve read in various books and websites. Swan is the story of being in a state of grace, and that exactly is very interesting to me. Swan flies by accident into the Dreamtime. No matter how hard she tries to escape, she always ends up back in the very same pond looking up at the Sacred Mountain. She thinks and she thinks about how to escape, and every day she tries to stay awake and aware so that she can find her way out in flight but her efforts are to no avail. She always finds herself landing in the little pond.

 One day she notices a frightening black hole swirling above Sacred Mountain. She worries about it but realizes if she cannot fly away from the pond then there is nothing she can do about it. She accepts it is what it is and returns her thoughts to escape. Later that day Dragonfly emerges from the black hole and Swan asks him how he flew through it and what it means. Dragonfly tells her that it is a punishment to those who work against or worse yet ignore Great Spirit but it is also the entry to meet Great Spirit directly if they surrender to Great Spirit’s plan completely.

Swan gets very excited and tells Dragonfly she is ready and willing to surrender to Great Spirit’s plan for her completely, and Dragonfly tells her to fly towards the black hole then and see what happens. He makes no promise to her that she can succeed. Swan flies into the black swirling hole and re-emerges as the beautiful white bird that we know. Dragonfly asks her what has happened to her to make her so stunning. Swan smiles and reports that she indeed met Great Spirit and that she was transformed by her surrender to the state of grace. 

Trust, it seems to me is the state of grace, and that’s been a challenge for me with this reaction to the anti-seizure medication. I’ve been completely resisting the whispers in my head that tell me to take care of my body as well as I have been known to do in the past. I wonder if it takes a deluge of failure to get us to give up the idea that we can control everything in our lives? I'd like to get past this "efforting" and fly into a state of grace.

It seems obvious to me that surrendering to this whisper is exactly what I’m asked to do at this juncture. Surrendering is not about inaction, but rather about being willing to face fear, even simple anxiety, with a sense of trust in whatever happens.  

One of the things that I learned from Argentine Tango is that I often struggle unconsciously against losing control. When I finally was able to follow a lead through the tango I truly felt like a swan, beautiful and graceful. And, that is the response I got from my dance partners, one of whom actually said, I kid you not, “Oh, dancing with you is like driving a convertible Mustang up Highway 1.” Blush. I know that I have been struggling with this experience for two months because I haven’t been able to get into my body and stop anticipating the next step with my mind. Rose suggested that I try restorative yoga to get in touch with surrendering at least to a few moments of being in the body. Indeed, I do believe this may be the key.

Yesterday, I started on 1/1000^th of a dose of the anti-seizure medication, Dilantin, and so far so good. 

Little by little I am feeling better about my slow pace around this pond.  I realize that in 31 days when I am up to the full dose of this medication, I will have the chance to earn and learn trust in this process.  I’m also restarting a diet I know makes me feel better even though it is challenging.  I’ve found a yoga class and my husband is a willing partner in getting me there and joining in. I am turning myself over to a Creator greater than myself to create a future that I can be aligned with and in which I will thrive.

I like the Swan story a lot, but I also know that truly I am a sea turtle through and through. I take a long time between knowing something and finally acting on my knowledge.  This apparent health crisis has caused some to feel uncomfortable with my pace, but I know like I know that this is the most natural way for me to recover, and heal fully.  Integrating the best intelligence of alternative and traditional paths,  I feel that truly this experience will be transformative. The appearance of resistance is not resistance to new information, but rather it is resistance to artificial pacing and the drama about getting this over finally. Whether I resist unconsciously or consciously, in the end I will go at my own pace in this journey.  In fact, if I remember anything I’ve learned in my life is that there is no “getting over with,” but only a long and extended adventure through many related experiences that lead to more.

Lies I Tell Myself about How My Brain Got a Tumor and Went Haywire

My dear Facebook guide of how words work, Oriah Mountain Dreamer, inspired me to approach this brain tumor thing from a new angle last week. She suggested that rather than trying to figure out the truth about how this brain tumor happened to me, I simply go for a lie. That is that sometimes when we just make stuff up, as in fiction, the truth comes to the surface more easily. I can never stop with one, so as the week did progress, many lies surfaced, and I think what follows are my top ten:

1. I am really a seventh dimension being trapped in a third dimension body and placed this tumor as a reminder, a book mark for time, in case I got distracted, to return to my true mission for visiting planet earth. As I came closer to the time for carrying this plan out the tumor expands just enough to utterly change my life. I accept that change is the one thing I can count on not to change.    
2. A very small Christmas Elf wandered into my ear one year, and while trapped there inspired me to be a Yuletide Addict. Now that I’m on the 12-step program of recovery, the Elf is wreaking havoc because it knows I’ll never go back. I am appreciative that I am no longer addicted to events, appearances and circumstances, and can enjoy good things without blowing them out of proportion.
3. When I was threatened by a couple of boys holding a gun to my head at age ten, the idea of fear and danger planted an actual seed in my brain. This led me to make choices that were dangerous and caused fear so that I could store them in the left temporal lobe for future exploration so that I might dispel fear and danger completely. Now, the file is full and it is time to deal with it and face my fears head on.
4. Having my head pounded against the floor caused a mass of cells to become confused and start growing there instead of someplace else. When confusion passed safely the cells announced themselves so that they and my past trauma could be removed. Boundaries are my friends and I am worthy of love and forgiveness for all of the blind turns I took.
5.  I inherited this tumor from my grandmother when she died because the pressure it creates in my left temporal lobe forces me to expand my vocabulary. Her vocabulary and love of books was her greatest gift to me. The only problem is that she also lost her mind towards the end of her life. Luckily medicine has advanced.  I remember I’m grateful.  
6. Cells in my body detected a nanobot, planted there by a CIA-like agency, and decided to surround it, causing an auto-immune over-reaction to just about everything else just to keep it under control. Thus my body foiled the plans of said government agency to turn me into a tea party advocate. However, now that the plan has been taken up by others, the agency is trying to destroy the nanobot’s evidence and that has caused the swelling and recent over-reaction to that which is supposed to be “therapeutic”. I must trust my body. 
7. The tumor is a frustrated demon that has been unable to stimulate my mathematics comprehension and to undermine my creativity and is now having a temper tantrum as it has become obvious that this idea is an utter failure. I must remain calm and not allow my shortcomings to continually undermine and frustrate me.  
8. Disrupting all forms of self-discipline this tumor is the result of a past-life as a Voodoo Doctor’s zombie-making in ancient Africa. Forcing me to experience zombification in short bursts. Karma is hell. I must stay awake and increase my self-discipline.  
9. All of my accomplishments are the result of having extra pressure on my brain from the tumor, and all of my failures are punishable by the expansion of the tumor. I just happened to reach a tipping point where the balance went over to failure. I must find my value, and my values in this world.
10. The tumor is my connection to my twin spirit living in a parallel universe. Something has happened to my twin and now the connection is broken and the tumor is self-destructing. I must learn to live independently and become self-reliant.

        Some lies are more entertaining than others, some lies are truth masquerading. Each one is the premise line of a story through which truth could potentially rise. These particular lies represent in metaphors of a number of things that I’ve been consciously working on through my life.  Rich with subtle diversity, I am stunned by the relationship they have to how I truly feel.  The big issues of existence, addiction, fear, trauma, inheritance, over-reaction, dis/order, self-discipline, self-worth, and alienation/self-reliance are all here, I see. Blush. I’m very blessed to have now such a map.

A Roll Call of Answers, but Which One Fits?

The week unfolded carefully and slowly, as if it knew I could only handle one answer at a time.

I spoke to the neurosurgeon’s sweet nurse first. After I filled her in on the immunologist/allergist plan of “desensitizing” me to Dilantin, I asked her if they had “cyberknife” technology available to them. It turned out that they do in fact, but they call it “gamma knife” – just different schools and manufacturers, but essentially the same thing. I asked then why they hadn’t offered that option to me, especially after I had had so many reactions to medications, and had had to cancel surgery because of those reactions. 

Deep sigh.  

She told me that because of the size and location of my benign meningioma, I am definitely not a candidate at this stage of the game to have stereostatic radiology. It is because the brain tissue around the tumor is so very valuable and the size of my tumor would require a larger beam to take care of it, that they dare not use it. Jeopardizing healthy brain cells is not an option, and so I am really at peace with this knowledge even though it would have been nice to be able to treat the tumor to an exit from my body without opening my skull up.

Almost immediately after that call, I got a call from my Primary Care Physician who has been quite good about staying on top of all of this process, I have to say. And, she echoed what I had just heard, “I looked at your MRI this morning, Amanda, and at three centimeters and being right in the area of the left temporal lobe, I have to say that it is highly unlikely that you’re a candidate for Cyberknife treatment.” Sigh. I was prepared for that answer at least, and when she asked if I still wanted to get yet another opinion, I said that I thought there were enough doctors’ appointments going on that I didn’t need to waste my time that way. She agreed because of the good reputation of the neurosurgeon that I'm using for this experience.

Hitting a dead end medically is not a terrible thing when you have the information you need. It is only when one cannot understand why the path is not open that makes it disheartening. I struck the whole option off of my list for now. It is possible that there is a reason I followed the path to its end, and so I share this information in the hopes that it may serve someone else as a good answer.

I forgot to mention in the last post that I had also discovered that our insurance plan will cover appointments with Osteopaths! Yay. This is a healing modality that has served me very well in the past. Like a chiropractors, osteopaths are specifically concerned with spinal alignment and the cranial-sacral flow. Unlike a chiropractors, they have medical degrees, can prescribe medication and are somewhat, grudgingly acceptable to the mainstream medical profession.  I had set to work to find an Osteopath who was in the network of providers for my health insurance. No one was listed so I called the insurance company and they told me that since there wasn’t a listing I could pick whomever I wanted to work with, and they would simply have to fill out some paperwork to become a provider for them. More paper trails to follow and work to do, but in the end I found a very good option and made an appointment for Thursday morning.

Thursday morning my husband and I drove the kids into school, and made our way over to the Osteopath. He dropped me off, and I went into a cozy natural wood-filled office. Wood benches, wood counters, wood tables and chairs. Lots of wood. Did I mention wood? This will mean something in a moment. My new Osteopath also is an acupuncturist, and so we had a long talk about the work previous acupuncturists have been focused on in my health scenario…namely my gallbladder meridian. It turns out that my gray-ball-of-dirty-laundry tumor is located near the end of my gallbladder meridian. It is a “wood” channel of acupuncture work. Did I mention wood? Plus, I happen to be a Wood Dragon in Chinese astrology. I always find all of these threads of commonality very interesting. 

He did an osteopathic adjustment of my head and sacrum and I admit that I felt lighter than I’d felt for a long, long time, at least immediately following the adjustment. As the day wore on I felt the adjustment acutely and I’m sure I’ve sunk back out of alignment, but this is normal for a bit until the body becomes accustomed to being in “neutral” again. He also gave me recommendations for another neurologist who will be my back up plan should this drag on past whatever the immunologist can do for me, a naturopath (which isn’t covered by insurance) and an ecological doctor (who I could consult if the immunologist/allergist’s plan fails).

One thing that has happened on this journey is that I have received dozens of recommendations and suggestions from all directions. I feel badly not following every single one of them, but this is the truth of the situation: there are only 24 hours in a day, and my energy for this lasts about four of them and then there are other things to do in a day. I have to pick and choose very mindfully where I spend the resources of time, energy and money.  I also am not allowed to drive, so that all of my pursuits have to be reachable during times when I can get help. I can’t run up and down the front range of Colorado at will to seek help. However, I have kept all the names, and modalities recorded, and should I need to, I will give them a shot, but even starting over with a new neurologist at this stage of the game seems pointless, until I give the immunologist’s plan a shot. One thing at a time is all I can do, and though it seems very slow to my friends and family; perhaps, it is the most thorough and least panicky plan I can pursue. Think of me as a turtle. I am slow and steady, and I will win this race somehow.

Then I heard back from the immunologist’s nurse after a day of phone tag, on Friday, and I have an appointment to meet with him on Tuesday morning to choose one out of TWO plans for getting me ready for surgery. Yay! I love to have options in a controlled setting. So, I’ll update you about those after that appointment.  Maybe we’ll get this show back on the road again soon.

Meanwhile, all week I was pursuing a deeper understanding of myself in this situation. The revelations that those precious discussions uncovered were astounding and very emotional for me. They deserve their own post and so…to be continued…

Many Paths, One I Am

Though I feel pretty normal, I am always conscious now of the gray-dirty-ball-of-laundry benign meningioma in my skull. This past week I felt eager to find other pathways to getting this thing taken care of in spite of my reaction to anti-seizure medication. It was time for putting out the calls to all the doctors to see if they were actually still thinking of me, if I was still a patient on their dockets. This is sort of funny to me because only the week before I had been getting tired of doctors, but when you have something like this being forgotten is no fun either. What I’ve learned, finally, is that when you call a busy doctor it takes until the end of the day to hear from them even if you call them right as their office opens. Sadly they may not have even researched an answer to your question, left carefully and meticulously with their receptionists or nurses. It seems they like to hear the question from you directly. Then you may not get an answer again for a few days, at the end of the day.

In addition to the doctors, I did some on-line research for alternatives to surgery for brain tumors and got myself very excited about “stereostatic radiology”. It turns out there has been a ton of progress on radiation for certain kinds of tumors, including benign meningiomas. Doctors of radiology now have the ability to target a tumor; which is simply a mass of cells growing where they oughtn’t to grow, in a way that is harmful often, but not always.  Stereostatic radiology is so specific that it often doesn’t touch healthy cells, and that is very good for brain tumors because one doesn’t want to lose any healthy brain cells. They target the tumor from multiple directions with very narrow beams of radiation, guided by an MRI of the patient’s head, prostate, lung, etc. Over one or up to many sessions of a half hour the tumor cells die and shrink away. No drugs necessary. Not much to recover from. You can immediately guess the appeal this technique had for me!

I started right away the process of sending my MRI, CT scan and EEG over to a place in Boulder that uses “Cyberknife” technology for a consult. The process of getting these records sent around is not simple. First you call your primary care doctor and find out what they actually have, and the process for getting those released. That entails a conversation with a nurse as to what you’re thinking, and then they in turn tell your doctor, who then has to get through a day of appointments before calling you back. Your doctor may be in a group that has a medical release process, and so you start that on-line, or you have to go into the office to sign papers. This is all to say, it is not like you can just call your doctor and tell them what to do.

Meanwhile, I put in a call to the immunologist/allergist who I saw right after Thanksgiving to find out if he’d found any research to support his plan to “desensitize” me to an anti-seizure medication. The process is like “immunizing” you to a reaction to a drug. If you’ve ever had an animal allergy and wanted to have that animal in your house, you might have gotten allergy shots to desensitize your body to their dander. The same idea happens with a drug. They give you a very, very small dose of bothersome drug and build up to the minimum dose very, very slowly over the course of 12 hours, 24 hours or several weeks.

I had scared myself to death right after I saw the immunologist/allergist by looking this process up with regards to Dilantin. I discovered that all the symptoms of my reaction to these anti-seizure medications together indicated a killer called “Stevens-Johnson Syndrome.” In other words, I could have died! This is to say to anyone who has a reaction to a medication take it very seriously even if the symptoms seem not so bad. It astonishes me that the neurologist didn’t ask me to come in a see him in his office until I had a third reaction, but that is another story. I called the immunologist/allergist right away in a panic, and his nurse called me back and assured me that this is precisely the reason why they would do the “desensitization” to the medications and that I would be monitored very closely to be certain of me safety.  Deep breath.

Then I sent an email to the neurologist, who I had been scheduled to see on Thursday last, to see if he really wanted to see me considering I was not on any of the medications he’d prescribed.  Surprisingly, he wrote me back immediately. The reason I use the email is because I find phone talking very irritating for the most part because my hearing seems to be affected by the tumor, and, also, because he has an email address. Grin, he’s gotten a lot of emails from me in the last two months. He prints them all and puts them in my file. This seems very civilized to me. I like this neurologist personally, in case any of you are wondering why I haven’t fired him. He is well-respected by his neurosurgeon colleagues. When I look at him, I think Simon & Garfunkel songs. He wears a bolo with his purple scrubs and he looks like he’s interesting. He shares his office, filled with Native American symbolism, paintings of Hermes, and Egyptian Gods, with a homeopath, his wife, and his children seem to also be involved in the well-being industry, and so I keep thinking that there is more to him than the evidence of my experience.  Back to the answer to my question, he wrote back and said that he wanted to see me when I was taking medication so gleefully I took him out of my Google calendar.

Then I thought, while I am at it, I’ll put in a call to the neurosurgeon to update him on what is going on. I was a little curious why he hadn’t brought up the option of stereostatic radiology. Of course, I waited for a return call.

So, while I was waiting, I decided to approach the whole thing from my own perspective that everything in life is a spiritual question. I have outgrown the ideas of affirmations or “The Secret,” having had some of my affirmative years explode on me and I was, frankly, unprepared for consequences. What I am after is a deeper dive into unfolding the gifts of every situation and uncovering the challenges. Obviously, my body gives me a good run for my money. I sought out the help of some women who I respect very much on the path of healing the body-mind-spirit connection, the author, Oriah Mountain Dreamer, and a dear friend, Rose Fitzgerald, both living far away, and then one of the therapists I’ve liked in Boulder.

My question to them was essentially, how I to identify the purpose that will ultimately motivate me through this experience to live fully recovered. I acknowledged that I seem to be most driven by living for others – my children, my husband, even my dog – but that I have trouble taking care of my own needs, putting myself first even with this brain tumor. I will overextend myself to help a stranger, but I won’t necessarily stick to a regimen or practice that supports me. Also, in recent years I have drawn a blank on dreaming my life forward. That has been evident in this blog as I struggled to find my career again. I have the sense that rediscovering my purpose, my destiny, is essential to my healing.

In short, I was a very busy woman at the beginning of the week, and on top of that I made a new friend, made some Christmas cookies and brownies for an old friend who has been very supportive through all of this, walked my dog. I even attended some Middle School open houses with my son, who will be leaving elementary school in the dust of memories in May. It was a very busy week and I am SO very grateful that I was not on medication.

To be continued…

People Who Need People

This thing with my brain is dragging on and on. I’ve described it as a holding pattern, and that indeed is exactly how it feels. I’m just circling, unable to land this puppy and get my baggage in hand to deal with, and unable to go anywhere else. Now, that I’m not on any medication I feel pretty good physically, barring the come-and-go headaches. The only thing is that the fear of possible seizure has barred me from driving, and that little detail has changed my life.

I am blessed by people who would so love to help me, but I am stubbornly holding onto my non-existent independence that I’m afraid I will alienate them before I really need their help. I mean if I felt worse, or was recovering from surgery now, I wonder if I would be so blatant in my rejection of assistance. Honestly, I cringe that I appear to be so helpless when I feel so okay. If it weren’t for the outside possibility that I might have a seizure, I would just carry on with my life as it was before this all happened…sort of...

My mom visited us for a week over Thanksgiving, and I tried that business of carrying on as if in normal condition, with the non-chalant ability to run errands because she was driving. Har.  Three hours a day of grocery shopping and errand running over the course of three days sent me to bed for two days. I have been taking three hour naps and going to bed early for nearly a week now since she departed. I’m not complaining. I have the ability to do this because of everyone’s support, but it is astounding to me.

I read in Julia Cameron’s (The Artist’s Way) Facebook feed, “Tell yourself you need to relax instead of create. Tell yourself you’ll write later. #how2avoidmakingart” and if I hadn’t been sitting down, I think I would have fallen over. I actually wrote a comment, “Wait…what?”  That’s when I realized that I’m a driven person. “Relax” is the comment I’ve received the most on my posts about this affair I’m having with a benign meningioma. And, I have to be frank; the front of “I’m okay” is beginning to break down because I do not know how to relax. I don’t know how to escape without running away. That’s when I realized that writing projects often serve to keep me on edge, running mentally away, rather than deeply sinking into self-knowledge as I would wish for them.

So, let me just say what I know: It’s not the brain tumor, fear of surgery, medication problems. It’s the fall out. One thing that is part of the fall out is the desire/need dichotomy. In a story the hero needs to recognize and accept, or change something about herself in order to have her desire(s). Well, I just want this whole thing to be behind me, and so I have been avoiding “need” like the plague. What? I really don’t want to accept that I need anything except for this thing to be over and done. Har.

That’s not how “need” works. A funny thing happens when one recognizes a level of need in her life; the desire narrows in focus. I recognized several parts of need that I’ve been avoiding in the last two months. One is that I need some assistance, even if it is as simple as asking my god-daughter to pick up my kids from school and deliver them to me after she’s finished classes at the local university (thank you Madeleine King!). I have to accept that there are some things that I cannot do for myself or my family right now. Then also I realized that I need to rest more than I am accustomed to resting. Somehow accepting the need to rest, I am allowing myself to feel my exhaustion and slow down my ambitions. I’m not relaxed yet, but I’ve reached the point in the journey when I can’t actually argue that I must finish anything or produce anything except the bare minimum. I understand that all I need to do is accept today including how I feel, where my energy is, and where my real commitments are going to land. I’ve been incredibly supported by one of my favorite author’s, Oriah Mountain Dreamer, and the words of her first book “The Invitation,” that remind me that accepting necessary changes does not mean giving up.

The very general desire of wanting this to be over has become more refined. The aperture of my want has settled today on wanting to understand why accepting help is so hard for me, and wanting to maintain the independence I have left by minimizing how much I depend on others. I want to recognize that the reason I cry now on a daily basis has very little to do with an anomaly that has invaded my brain, but because the parts of me that I most value – the take care of business, stiff upper lip gal, has no way to maintain. I have to set aside some of my joking and sarcasm to be kind to myself and that is such a challenge.  Sucking it up, rather than self-acceptance, is not working.

I admit that my resistance is wearing down through shear necessity, and wouldn’t it be so much easier if I could just put it away in a drawer until a sunnier day? It would, but it forces me to confront the fact that I feel I am a valuable person because I take care of things, of people. I feel worthy of love or admiration because I give or instruct. Now I find that I simply don’t have that much to give because I’m sleeping half the day away, because I can’t get anywhere on my own time, because getting anywhere means that someone else has to be the giver, because I don’t know where I’m headed. Argh! I do not want to be pathetic, and I’m frustrated by my self-concept.  I completely understand why the elders who lose their mobility and abilities are so damned ornery or depressed. I really get it now, and I had no idea before. My grandmother's favorite saying in her last years was, "Getting old is not for sissies."

The last thing in the world I want to become is a pet, taken care of, directed by other’s abilities to meet my needs and to feel vulnerable to delays and constraints of scheduling and other obligations. I want to be fully independent, but I understand that this is foolishness because none of us is fully independent without paying the price of isolation. Therefore, my desire’s narrowed aperture has framed something poignantly important: I want to know that I am valuable and worthy of love even if I need…need anything at all…I want to know that needing others in my life is good and as the song goes, “lucky,” and I want to know that I won’t fall apart, and the world and all it offers won’t fall apart if I take a break.

People who need people are the luckiest people in the world? I want to know that.