The Long and Winding Road...Leads Me to Me

It has nearly been a full month since I had my skull opened and the little-gray-ball-of-dirty-laundry removed. What a month! It started with what I can only describe as partial delirium. I was so happy to have the thing out of my head, and I suppose the morphine, and anesthesia sort of had me on a different plain of perception for a while. Yet, I was a lot less delirious than I had really expected to be, to be honest. 

Fionn, the Modern Muse

Soon after surgery I woke up and in my daze recognized and remembered where I was and what had just happened. I saw my ancient Neurologist, Dr. Philip Yarnell, across the room and shouted out a, “Hello, Dr. Yarnell!” to him, and I think that sort of surprised him and he came right over and tested how I was responding to left and right movements like touching my nose with my eyes closed with the fingers he chose, and moving my toes. Afterwards, he said, “Yep, you’re going to be just fine.”

At that point I felt no pain but I was terribly thirsty and so I asked for water, but all they could give me was ice cubes to suck on and little sponges to dip into water and suck on. So I did. This was followed by my husband and father bounding into the big room together with smiles on their faces, delighted that I was so chirpy.

Then my Neurosurgeon, Dr. Mark Robinson, walked in to talk to them, and as they talked, I felt some kind of relieving sleepiness. I remember Dr. Robinson pointing at my head, and nodding and I remember them asking some questions and him answering, but I have no real memory of the words, even though I am pretty sure I participated in the conversation as if I were very intelligent indeed. Har.

I was taken care of in Intensive Care for a surprising two days. I say it was surprising only because apparently they expected I’d be going home after two days, and that didn’t quite happen. As good as their intentions were, some things got kind of icky.

Devora is Awake

Before I go there, I want to tell you that I did something very important to my recovery unbeknownst to the medical folks. In secret I took a large dose of Arnica the morning before surgery and then when I got to my ICU room I had Michael bring me a second large dose of Arnica. This homeopathic medication has helped me in previous medical crises (oral surgery, and a hysterectomy) to recover super-fast and very well, with little bruising. I encourage you to sincerely consider finding more about it if you’re facing surgery. Unfortunately, you cannot discuss it with a surgeon or the nursing staff because they don’t work with it, and will rule against it. Someday, I hope this will change because I've healed fast enough to get wide eyes from the doctors...

In ICU, meanwhile, they were pumping me full of Morphine and all kinds of other medications that my body is not fond of at all. Sadly. By the time it was dark outside, I was vomiting in a little pail the nurse quickly provided for me. As I was recovering she started putting in an intravenous dose of Dilantin. If you don’t remember how badly I reacted to the first time I took Dilantin, let me say that my reaction to this way of taking the medication was near paralysis. I made her take it out after only a 1/4th of the dose was given and I could feel it as it climbed up my arm and into my head, like a march of pick axes within my veins. I screamed. I admit it. I screamed. I shouted at her that this was not the way we were going to do anything. I asked her if she had bothered to give me any antihistamines or Zantac (could this be why I was throwing up, perhaps???). What followed is that I had to review with every shift nurse exactly how the medication business was going to work, and I would not let them use the intravenous hoses for anything but water and anti-nausea medications. I stopped taking the morphine and moved to oral Percocet and oxycodone. I didn’t really care if I had a little more pain. I was very self-advocating and protective. 

Meanwhile, the left side of my face swelled up like a puffer fish. I got a black eye that I could barely open. Frankly, I think I had a severe allergic reaction to the entire experience. I looked no different in those moments than I had when I’d reacted to the cotton harvest on my Pretty Pa’s combine in the Rio Grande Valley some 42 years earlier. I had to build up all the anti-histamines in my system and the hospital pharmacy didn’t actually carry one of the anti-histamines, nor the Zantac I’d been taking leading up to the surgery, so my dear husband had to go to the grocery store and purchase what I needed. The hospital didn’t even have the oral Dilantin to fill in the missing 3/4s of a dose of it for several hours.

After two days they moved me to a regular room and they removed the blessed catheter and I was able to move around my room when I rung up the nurse to remove whatever IV was hooked up, the blood pressure arm squeeze and the ever-marching leg thingies. Ah. That was such a blessing. Finally, a neurosurgeon on call at the hospital came and cut the gauze turban off of me, and told me I could take a shower. Hallelujah! I thought I’d be going home right afterwards, but apparently, not.

All this time, my husband sat quietly next to me, reading his phone in the dark or daytime. I must have slept now and then, but I don’t remember sleeping lots. 

Another two days went by. I watched some television and really couldn’t perceive how so many stupid infomercials could exist. I tried to watch news, but settled on The Weather 

Oriah Enjoys the Lake

Channel. That was the only television that made a lot of sense to me. Passing storms, wind, sunshine and snow. I would then dream of the sets of shows and watch people walk in and out of these sets that were actually their lives, and how the world beyond the sets they believed in was totally different, open to change, neutral. The sets were set, but they were not true reality. They were perceptions that had thin walls, and the potential of being blown away in storms. Beyond the sets was a world or a dimension of reality that had not been decided on yet, and I could walk in it.

Another set of dreams I had placed me back in 1996, when I was at another turning point. After eleven years in a difficult and abusive marriage, I had determined that I had to begin living my own life and pursuing the things I was truly interested in. I had done three years of weekly therapy and was meditating daily and my creative spirit was expanding in many new directions. My dream then was to write very artistic, visual scripts about lives that were not easy, poetry and to create a new Tarot Deck called “The Cosmic Egg”. I was ready to consider leaving my first husband (now wasband) and even our house that I had painted wall murals and re-landscaped with a triskelion and a fire pit, a forest of gingkoes and redwoods, California poppies and tea tree bushes. Still the only person who knew that my husband was abusive was my therapist, and so when my therapist became abusive and insisted that I wanted to have an affair with him, my evolution unraveled rather quickly. 

Within four months I went from my first steps towards independence backwards into a desire to be approved of by supporting my husband, and even finally fulfilling his wish to have a family. I turned my therapist in to the board, and I gave my husband a cut up condom for his birthday. I went from being a part-time freelancer with time to paint and write, to a full-time publishing consultant with no time to even mother the child I was pregnant with, so that by the end of the year I would have a personal assistant, a housekeeper, a gardener, and a year later a nanny. I insisted giving up the house with my murals painted, and moved into a swanky Spanish Colonial that may have once been a boarding house to Charles Bukowski on the two block street named after my favorite inventor, Nikolai Tesla. I went from $25 dollars in the bank to making $15k a month. Yes, all of this really happened that quickly. It was all for approval from my first husband, from my friends at the time, from my parents, and I got it. And, it undid my chosen road very precisely. 

Alma in Her Habitat

Oddly, the dreams I had were very much about saying good-bye to those mistakes peacefully and accepting that my dreams continued painfully, like a forgotten and downgraded pavement next to the approved highway, throughout the last fifteen years. The dreams continued to be alive even if they were fought against as distractions from cleaning the house and taking care of my children and seeking approval from everyone. In one dream I told my husband of 1996 that I loved him, but that it was time to move on. In other dreams I made peace with my children and told them that their independence was crucial to me.

The doctors sent me home from the hospital on the fifth day, and the dreams continued in my hour and a half naps, and even as I was awake until they felt processed and comprehended. I found it hard to concentrate on “reality” to the point where I was occasionally overly grumpy at the disturbance of life to the unconscious realm I had such good connection with for the moment. I hate to admit that I occasionally snapped, and apparently this is common for people recovering from brain surgery. The word patience is hardly enough for making a commitment to decide whether to stay in dreamland or start coming into reality.

Making these dream-level departures from the decisions I made in 1996 has been such a relief, but has also unleashed years of frustration and anger over carrying the weight of a life that led me away from my true self. Yet, in just a month I have some sense that I am reuniting with myself, putting my feet on the abandoned road, after years of pounding my head against the wall of approval...could this be the reason for the tumor?  So, as I’ve come out of the haze of medications, and gotten confirmation that the tumor was indeed benign and that it had been caught early enough to have no lasting damage, I have hope unlike any hope I’ve had for fifteen years. Though, certainly, there are temporary setbacks like the pain and lack of rest, and that the left side of my face feels like it is just coming off of Novocaine -- all the time. I feel confident that I’ve turned a corner again and found myself in the realm where the sets of my life haven’t been completely determined and there is the potential to create some new and simple realities that are better aligned with who I am now. Where the road I'm now on can find the door to this set.

I have been practicing artwork again on a daily basis, and thinking about the off-formula stories I’m always intrigued by, but had learned to reject in favor of an approved formula that I've grown to hate. I’ve been resting and waking at all hours of the day or night. I’ve been watching how my daughter, Bea, is increasingly aware of the world she is entering as a new adult, and wears her grief over her lost childhood. Then also I’ve been watching how my younger son, Lio, is already aware of some aspects of adulthood that excite him to the point where he’s leaped ahead of the family at age eleven to webbify his life with video streaming, video chats and group games.

Dear Quimby in Pastel Land

My wasband has been as supportive as he can be, and taken time with the children that I normally would have had. He is who he is still, and they’ve both had terrible colds that lasted longer than a week and needed some Mommified assistance. So, both children have had extra days here and there, but only one at a time.

Finally, my dear husband has been carrying the load of my transportation, childcare and household upkeep for some six months now, and has concurrently become increasingly responsible for projects at work. He’s like a Lancelot, courageously determined to see that things get done because they need to get done, and at the same time exhausted, and falling into the river of forgetfulness because there is just too much on his mind. Now, poor man has collapsed with fatigue and the caught bug of his step-children. 

This leaves me, only me, to be fully conscious and begin taking care of business, too. I’m glad to say that I can to some degree, and that what I can’t do, I’m actually fine about not receiving approval. This is a leap for me. I will hang on more determinedly to the emerging unconscious knowledge I’ve always had and hidden from by trying other roads that might be worthy of rewards outside of me. This, for me, is real healing because finally I comprehend that the road I'm on now leads me to my own door.

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.

Does Anybody Really Know What Time It Is?

November 18th will be my brain tumor party. The day I get anesthetized, brain tumor removed and titanium snowflakes in the end. So, that's that. I argued for an earlier date, but in the end found myself begging for the doctor to confirm, at least, November 18th, so that I could plan my life. Then while I was waiting and waiting, it occurred to me that part of my control freakishness is an addiction to feeling I can plan the future...as if...and the reason I know this is an addiction is that when they finally called and said that this would be the date and gave me enough information to make me feel like it was real, I felt the serotonin wash through my system. I felt relieved, and it wasn't even what I really wanted.

What is it with us that we are so concerned with what we're going to do tomorrow? What is it with the calendars and clocks and alarms and blocked out meetings and pick-up times for the carpools? I'm reminded of the lyrics from a favorite Chicago song, "Does anyone really know what time it is/Does anybody really care?" Oh, yes, we care. Let me correct that, I care. So, now I have three weeks that I can plan to the enth degree and busily I set about doing just that in my brain first and then on the calendar. Then I hit the wall.

After three weeks, I have a vague idea of the first three to five days of what will happen, and after that...phew...I have no clue. It all depends. It depends on how well the surgery goes. It depends on how my brain reacts to not having this gray egg pushing at it. It depends on the closure. It depends on whether there is any tumor left in the cavity. It depends on technology and the talents of the busy surgeon. It depends on things I seem not to have control of...

So that immediately informs me...what can I have control of? Har. I can control my attitude maybe, but my emotions are having their way with me. I was confident four weeks ago when this thing was discovered that it would be removed and all would be well, but all this time has passed giving me far too much time to contemplate less favorable results, and to be honest, that really is not where I need to go with my contemplation. Then I happen to watch movies where people die, or are chronically ill because there suddenly seem to be a plethora of those stories, and it becomes really scary. Then it becomes obvious. I have to spend the next three weeks cut off from media and well-intended conversations that emphasize the tragedy of finding out one is not perfectly healthy. In fact, I must do everything in my power not to write negatively about this brain thing.

What I'm conscious of is that when I had my miscarriage and lost my womb, I was immediately willing to go into the depths of my sadness about it. It feels like that was harder. It feels like this experience is more technological and mechanical and that it will turn out fine. Then it doesn't. Then it feels like this long delay must be the Universe asking me to take the time to say good-bye to life as I know it. Why else? I mean it's the night before Halloween and that's the scariest thing I can think of having to go through, and here I am going through it. Boo. How do I climb out of that?

My theory is that the only way past these feelings is through them. Coincidentally, I'm working to finish up a project I started in August. I'm writing a poem for each Tarot card in my own Kosmic Egg Tarot Project. It felt like I needed to complete something, and this was accessible. So, I'm writing the last fifteen poems this week. I've been writing the Minor Arcana suit poems, four a day (nearly) for a couple of weeks, and likely I will need to edit them quite a bit, but I'm happy with my "Nines" and wanted to share one them in this post because I feel like it partially encapsulates exactly where I am with my life right now.

To increase your understanding of the system of Tarot, let me just say that the "Nines" specifically represent the "realization" of each suit, sort of the best and worst of it as a big "aha". The Minor Arcana represent, for me, habits and are thus very mutable, and each suit represents a sort of path that we may be on for a period of time...material, emotional, mental and spiritual...textiles, vessels, tools and light. I will post the other "Nine" poems in separate posts...Here is the first:

Nine of Textiles

Those moments of self-realization create
Sustainability through the expertise I
Bring to the fabric of life. There was a
Time when I could not have survived
The challenges of this moment, but now
I am wrapped in warmth that I sewed
Myself and I can enjoy these conditions
That others would find a challenge.
The Aurora Borealis provides the
Unfathomable vision and my wolf is now a
Faithful companion, who assists my
Daily work to thrive, no matter what the
Appearances and circumstances are
Because I know I can adapt to change.

copyright (c) 2011 Amanda Morris Johnson

Titanium Snowflakes

It's pretty cool what they do...maybe not "Spock's Brain" cool...but pretty amazing in its own way. So, yes, they are going to saw through my very thick skull and they are going to take that piece of my skull and let it sit in some kind of solution for the four to eight hours (yes 4-8) that I'm in surgery. However, before they get to that point they are going to take a detailed MRI of my whole brain and send it to a GPS satellite that will somehow have a GPS connection to my surgeon's knife. How cool is that? That image will guide the surgeon via flatscreen HD (3D???) television in through the hole in my head. Just to be more graphic and gross, since it is nearly Halloween, it is the space just above my left ear, about 2 inches in diameter. 

Then they're going to sliced and dice the tumor very slowly and carefully, and pull it out in slices like slices of an egg. Once they get some of it, they immediately send it off to have it tested (but the lab is much slower than the knife - 2 weeks to know if this tumor is actually benign for sure). So, the surgeon must be going super duper slow and careful so as not to knick the brain in anyway. Must have the patience of a Saint! Any of the tumor that is reaching into tough spots to reach is likely going to stay there, but so far it looks like it is going to be easy to remove. 

The tumor is outside of the brain lining, and inside of the skull, taking up space. It is pressing against specifically the region of the brain that controls some of my language skills, my hearing, and my right hand -- otherwise known as the left temporal lobe. They expect that recovery from this surgery will be something like recovering from a mild stroke, so I hope you'll be patient with me. You'll see in the image below that this thing is pressing up against my storytelling and memories and that's kind of disturbing to a writer. It could be anywhere between 3 weeks and 6 months before I'm up and running. It's likely that the space left open will fill up with the fluid that surrounds our brains and runs up and down our spinal cord, and that my brain will stay just as it is. 

So you may wonder, why not just leave be? I did. I hear the risk of seizure has gone up exponentially because of my ten minutes of aphasia at the beginning of the month. And, after surgery for the first month I run the risk of seizure a lot higher so I will have to take it slow and take these medications which are like two margaritas in the system all the time. There may be improvements like: no more headaches, vanished hearing problem, and clarity. That's my hope. However, they are ever cautious and make no gleeful promises. Really wish they were more positive about a number of things besides, "this should be removed," but I suppose this is the result of a litigious society. 

Oh, and then when they're all finished, the titanium snowflakes! They fill the space up with a saline solution that will be absorbed by my body, and replaced by that fluid I wrote about up there, and then they stitch up the lining. Then they put the piece of skull back on, and they go around the edges and put little titanium snowflakes to seal it with titanium screws. Apparently, I will not set off Homeland Security detection devises with these titanium snowflakes but they will be with my bones for all time until I am dust and they will just be a pile of mysterious titanium screws and snowflakes. They could be golden or bluish not than anyone will see them because then they pull the skin back up and staple it together (such a sloppy ending don't you think?). I will have a partially shaved head, and some wicked scars. 

Hopefully, that will be the gist of it. However, if there is some tumor left in there I will have to undergo radiation. Then I will be really pretty. OMG. They couldn't have managed this BEFORE Halloween. I would have been the best Zombie Mom ever!