Sunday, December 18, 2011

Resting in Ambiguity

Because I’ve found the struggle interesting, I suppose I’ve not envisioned the outcome I want. Now, I feel neutral in the struggle finally, that the gains and losses have evened out. Today I told a friend in my community that now it looks like brain surgery won’t happen until February…or so. She laughed and said, “Oh. Forget about it.” This stuck with me and it occurred to me that there was great wisdom in those words.

How much does any one of us really know about the future? The fact that you can make plans in your calendar stretching out infinitum doesn’t mean that any of it will ever happen. Ouch. I know. What happens if the future becomes encased in a fog?  It doesn’t mean that nothing is going to happen. It simply means there are no predictions, no scheduling, and no planning. Even the events you know are out there become vague, memory-rooted markers that have no pull anymore.

Maybe it is the fact that I can’t drive, that I can’t seem to make a plan for the future without it being wiped off the white-board calendar by another surprise in this situation. I am simply tired of the disappointment. I have to laugh that the thing I want to know is when I’ll have brain surgery. Who thinks something like that? Here’s my confession…I can’t imagine my future anymore and I can’t imagine how this situation gets resolved. I give up on specifics.

I’m going to forget about the specifics. I am now fully invested in vague.

Yes, there will be a solution to the benign meningioma. What is the solution? I don’t know anymore. I have vague ideas.  The ideas may or may not work in the way I think they will, and so I am free now to completely let go of struggling with the details to get to my destination out there.
For another metaphor, imagine you are going on a vacation and you have to learn how to not only operate a plane, but also all the luggage systems and run the stewarding. Wouldn’t you rather simply focus on arriving at your destination and what fun you’ll have when you get there?

Taking me out of the alarming field of making the medical plan work, or the alternative plan work is a little bit…relaxing. It is what it is. That’s what I say about everything else, and it turns out, “It is what it is,” perfectly applies to this. I do not need to understand the why, when, where or how, and I know the what –vaguely – the solution will happen. I accept that the strong stream of prayers and light coming my way has made an impression that there must be something in me worth saving. The intentions for full recovery are in motion.

What does that leave?

This makes me think of my daughter’s smile. When I was pregnant I read all the books, researched methods, chose the most independent route I could find. In other words, I distracted myself because I had no idea what it would be like to be a mother of a child. I had no idea what this child would be like (I didn’t find out gender via technology).  Yet, being pregnant, I trusted absolutely that I would love my baby. I did what I could to express that, of course, I petted the baby’s head, or maybe it was her bottom, through my belly’s wall, and I tried to keep food down. I played music, took long walks and she gestated in spite of some surprises along the way, some changed minds about methods, some moves (two), and a new job. Somehow it all came out okay when she emerged. No matter what detail I struggled with (nursing, diaper changing, burping, working), there were only a few things I cared about – that I love her the best way I could by learning about her, by being curious, and that I not betray her trust, and that when I smiled at her, she smiled back at me. When that smile finally appeared; oh boy, I spent a lot of hours smiling.

So, that’s what I’m aiming for metaphorically, I’m aiming for an inner smile that trusts that the world is my oyster. I want to be loyal to my life, to my purpose, to my mission. I want to be curious and learn more about my purpose here on earth. In short, I want to learn somehow in the next few months to absorb what has escaped me before…how to love myself, accept myself, shit, burps and all. I want to embrace a sense of wonder as I emerge from recovery and begin to smile in love with life. 

Saturday, December 17, 2011

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 1/1000th 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.

Friday, December 16, 2011

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.

Monday, December 12, 2011

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…

Sunday, December 11, 2011

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…

Sunday, December 4, 2011

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.

Monday, November 28, 2011

Keeping it Real

How am I really? Har. I have a benign brain tumor. No really, I’m currently not on any medication other than Benadryl and vitamins. I’m trying to tamp down the allergic reactions I normally have with the Benadryl, and I’m trying to support myself nutritionally and with an added boost. My face, I am apparently actually vain about it, has shrunken down to its normal cheery roundness. I no longer have strange aches and pains in my legs. I no longer have a web-like red rash all over my body.

That said, I’m tired. I am unable to tolerate very much disruption these days. My kids were home with me this weekend, and I failed as an organizing principle and entertainment wizard. I foisted responsibilities and gave up perfectly good opportunities to share experiences in favor of lying in bed and staring at the ceiling. I let my mom take them out of the house on Sunday and did not volunteer to join in. This is not my normal mode of operation. This is the antithesis of me. The only consolation I have about this is that maybe this is not the new normal. Maybe this is something that will pass, but I don’t know when or how.

That not knowing is pretty frustrating. This morning I had a dream of entering a hospital that was no less intense than a Hollywood contract negotiation. There were a million documents to sign and agree to, and in the dream there were twin lawyers who wanted to know just what the extent of my expectations for recovery were, and were not interested in agreeing to my bright prognosis. They wanted to create a hedge fund that would diversify the estimates for success. They offered me ample evidence to second guess my intentions. Luckily, the hospital was decorated with my grandfather’s paintings, paintings I’d never seen before and I took that as the single most important piece of information pointing to a good omen.

These days I feel as if I’m in a battle with a super-human Amanda who is used to working on so many different levels it isn’t funny to lowly little ol’ me, who has aptitude, but only for single-minded tasks. I am aware that I am in a holding pattern here and running out of fuel while this battle rages. Super-human Amanda is the one who is frustrated by the delays and the reactions and the exclusion from normal activity. Little ol’ me is biding time, being deceptively non-chalant about what can be done and what has to be dropped as if this is a thing I’m really good at -- choosing priorities.

When I don’t choose fast enough the result is nearly immediate. I end up with a headache to beat the band. I end up unable to get myself to sleep. I end up having the blood boil at the surface of my skin, turning me a Barbie hue that only recedes with bed rest. This is forcing me to be much more ruthless in my non-chalance about commitments and plans. This forces me to encourage my kids’ independence more forcefully than ever (my son noted that my temper is a lot shorter - but what he doesn’t realize is that I’m desperate to know that they’ll be okay no matter what unfolds).

Tomorrow I hope I will get a new lease on life from an allergist. I’m hoping that he’ll be better than any other allergist I’ve ever seen, and will come up with an answer about the anti-seizure medication conundrum. I’m hoping that he won’t lower my expectations for full recovery, or hedge his bets with shrugs and concerned looks like my neurologist. In short, I’m hoping for a minor miracle with the bigger miracles to be formed just around the corner of time.

That’s how I am today.

Wednesday, November 23, 2011

Sign Posts of Gratitude

When in possession of an unwanted benign brain tumor, and the havoc that causes, the feelings of gratitude may be a little more challenging for me to touch daily, but they don’t go away. In fact, recognizing what I am honestly grateful for picks me up when I’m down. Feeling gracious and thankful when life is giving me big reasons to shrug and be sunk into self-pity is not natural, perhaps. Perhaps, I have to scrape away a layer of gunk to put my mind where I want it to be, but the work is necessary in order to have perspective and meet the opportunities of the day with open arms. I’m not going to lie about it and say, it is oh so easy I just have to sing a little song and I’m right back where I belong. No. It is a conscious effort that I choose to make not only for myself but for everyone around me.

I’m not lying about how hard it is to find the attitude of gratitude, and I’m not lying about things I'm actually grateful for today. To prance around as if this brain tumor is nothing; though, maybe in fits of denial I will go there sometimes; is a dishonor to myself and everyone who has reached out to support me through this rather tight, dark passage. So, while I spend hours in bed staring at the ceiling as it spins around above me, I am grateful to have voices sending prayers out into the ethers for me. It brings me to tears to think of it, and,with that support, I know I cannot fail to emerge from the other side of this tunnel somehow braver and stronger than when I went in.

I’m grateful for the messages of support, suggestions and curiosity that I receive, even if I cannot answer them very quickly. And, when I am tired of talking, writing, chatting about the situation, I am grateful that there is a power off, and a shutdown button on all communications. I’m grateful that I’m learning how to use those buttons. Blush. I’m grateful that the support I receive respects my boundaries and many limitations right now.

My gratitude to my husband for keeping down the drama is a bottomless well. He is my touchstone, the go-to person when I feel it is all too much. He seems to love me even with all the trouble I cause, and I really do cause a raucus, and he proclaims me beautiful when my face is swollen from allergic reactions. He remembers to keep the laundry cycling through, and he’s even learning to cook. He is rising to the challenge of this time in our lives. What woman would not be grateful for that kind of love?

I have children who cleaned our home on their Saturday, without complaint. (Yes. There are children like that in this world.) They read to me when I was in bed, feverish and in pain, and combed my hair and held my hand.  If this isn’t touching to you, I don’t know what to tell you. Of course, they are children and they have their wants and needs, but it does occur to them to set those aside now and then and look at what is actually going on around them, and for this I’m grateful.

I have parents who would like to lean in and fuss over me, and yet they know that I’m not that kind of gal. They respect my space and let me ask them for assistance when I need it. My mom is giving up her beautiful Santa Fe for a week to come and drive me around (since I can’t take medication for anti-convulsion, I can’t drive, in case, just in case…) and sort my laundry. And, tomorrow is her 70-something birthday and she’s willing to hang out with a space cadet who may or may not muster making a cake for her. My step-mom sends up little snacks, takes my kids out of this sick space for afternoons and sleepovers. My dad actually left his lazy-boy and has driven (which he does not like to do ) up to my home several times to check in, and let me tell you it is a surprise always, and he’s smart enough to stay only 15 minutes even though the drive takes him an hour.

I am grateful for my writing because, though I haven't accomplished much with it in the world out there, it has been my most faithful friend, listened to me without judgment and allowed me to work out on the page what to do in every situation of my life. I could not ask for anything better from it, as there are definitely times that I've droned on and on about the same thing and yet finally a breakthrough happens that changes the course of my life. I am deeply grateful to be able to share a fraction of my writing with anyone who has the patience to read it.

So, these are my true gratitude attitudes for this Thanksgiving weekend. They are not grand in the scheme of all possibility, but they are sweet and poignant and meaningful at a time in my life when I need quiet more than parades.  I look forward to getting through this and looking back grateful that I knew my gifts well enough to put sign posts on them. I’m very blessed. May you take a moment to find what matters to you, that which gives your lives a little more ease and mark them with your own kind of sign post.

Saturday, November 19, 2011

Finding the Therapeutic...

My, oh, my, I have been off of the anti-seizure medication since Tuesday when my neurologist took one look at me and said, “You have to stop taking the medication, if it gives you a rash like this.” Doh.  Yesterday, thanks to prayers and meditations from all over the world, I took a badly-needed four-hour nap. I feel as if the buzz of the medication is finally wearing off. My neck is no longer swollen like a jungle frog in mating season. I am no longer covered with angry, prickly rash and the heat that made my skin sunburnt pig pink, has dissipated.  In short, I’m feeling near normal.

However, the gray laundry in my head headache floats there over my right eyeball, and the urgency to begin a new trial of anti-seizure medication looms.  As it does this, I notice my resistance to the process, the inner doubt that it will work and the hesitation to open my body to another round.  I notice that I promise myself one more day of normal, as myself, in hopes that a day of balance will fortify my system so that the anti-seizure medication will be what they call “therapeutic.”  I try to imagine what that means.

A “tonic to my system” would be how I imagine “therapeutic” medicine works. I wonder why medications that were supposed to do this for me actually did just the opposite.  Is there anything to be done about that? There must be a way and a one that works the right way in order that I get the egg out of my skull. I didn’t even know that I was uptight about the brain tumor and surgery, to be honest. In fact, I felt relieved to have found a clear answer to some of my fatigue, memory problems and headaches. Perhaps, if I had had a normal reaction of panic and distress, the medication would not have triggered so much despair?  I hope that isn’t it. I still feel confident that having the surgery is going to help.

I have returned to an old regimen of considering how food may affect my body’s ability to process new experiences. I modify my intake of anything that has become a habit in the past few years – wheat, caffeine, acidic foods. The aim is to reduce “heat” in my system.  Though, except for this medicinal rage, I have not had an occurrence of hives for several years, the fact is that the rashes bear resemblance to that old foe enough so that I feel a return to mindful eating is called for and then what else can I do?

With the possibility of seizure now is not the time to start a true exercise regimen, however, it seems like a calming routine of Hatha Yoga might be well worth it, san inversions. This is not a time to try to stand on my head. I notice how stiff I’ve become from simply walking hours a day. Stretching and moving in a slow and deliberate way gives me pause. I see that my rebellion against taking care of myself physically was a bit of childishness that I can no longer afford. I make love to my body by simply feeling each muscle challenged to release this rebellion and accept responsibility for the healthy exchange of oxygen and carbon dioxide. Work with me body and I’ll work with you.

Why should I be so against this body? I purport to love my body, and have meditated on the image of dying and loss of it with a resolve to love all that it offers me, my soul, to experience a physical reality not otherwise available. Still, I want to behave like a child and let the body take care of me. When it does not take care of me then I rebel. I want to eat what delights a few taste buds rather than nurture it with foods I imagine with distaste. I want ease, and all this conscious movement feels like work. I feel my anger that my body cannot simply thrive without attention. It is only now that I recognize that my relationship with my body is somehow the root of a deep problem and that somehow, urgently, I must resolve the conflict once and for all. How indeed to make peace in a concrete, material world way? How can I give up my hours of thinking, thinking, and thinking some more in favor of moving, food preparation, and tidiness?  I never thought of myself as someone who lives solely in her head, but it appears that I may actually reside in that egg in my head and my body apparently an abandoned hulk.

Inhabiting my body then becomes a new conscious goal. This will seem very odd to anyone who has successfully lived in their body through their lives. But, for me it is a frightening prospect. I am nervous to make the move out of the egg in my head because my body is so unpredictable to me because I have not always reaped the expected results from “good behavior”. I do not have the sense that if I do the healthy thing that the healthy experience will follow. I have more of a hit and miss sense of my body. I will have to employ the tactic of curiosity once more to my life. That is, if I try such and so, then how will I feel?  I have to be willing, even in this time of urgency, to be my own guinea pig and trust that somehow I will suss out the right action towards a feeling that I am in a therapeutic state.

It seems clear that living in the egg in my head has been somehow rewarding in ways that I’m not consciously aware of, and so saying farewell seems to mean that I must trust that, in fact, I do not need the brain tumor in order to be myself. Giving up our crutches is always a challenge, but more so when we are no longer aware that we’re using them. I’ve joked for the last six weeks about this and that being the fault of the tumor, but now I do wonder if the benefit of the tumor needs to be recognized in order to be released.  What if, for instance, the egg represents all of the traumas of my past, traumas that have served as excuses for me not to become fully myself? If it is now time to remove their effect, symbolically and literally, am I ready to then become fully myself? Is that the resistance and the rebellion in a…eggshell?

Monday, November 14, 2011

The Waiting Pain

The journey, any hero's journey, is going to have bumps along the way. When we're writing a story these bumps are what strengthen the hero's will to overcome her own bad habit or flaw finally because she sees that she cannot have her desire without change. A hero's journey implies change from the get go, even if that change is simply self-acceptance. When a hero makes the necessary change the world comes back into a new balance that ensures thriving for least until the next hero's journey. When a hero cannot make the change, then the story is a tragedy, and the rest of the world makes a change, but the hero is left in the dust, and there is no guarantee that thriving will happen for anyone.

The bumps along the way are what I like to call "villain voodoo". They cause a great deal of discomfort and even pain for the hero. This villain voodoo causes the hero to undergo training, to make better plans, to understand the rules better, to figure out what her values are going to be finally. Sometimes a hero cannot pin her torture on one particular person, a villain. Sometimes it seems as if the voodoo is coming from every direction, and usually that means that the voodoo is self-perpetuating, and she's got to stop hurting herself or suffer the consequences. (Yes, I'm using a gender-neutral "hero" by the way.)

I've been writing about my brain tumor surgery from a hero's point of view because right away I saw that, of course, this is just that sort of journey. And, like any hero would, I entered the process naively and hopeful that it would be easy and straightforward, bah-dah-bing, bah-dah-boom. And, of course, like any hero's journey the bumps and voodoo have been cropping up steadily in every direction. So, let me tell you about my voodoo in the hopes that it will help other hero's be informed, know they're not alone, and make better plans.

I have always had bizarre health problems with few clear cut answers from Western Medicine. More on the chronic side than on the acute, these problems, I discovered when I was in my 20s, were better addressed holistically. For years, beginning when I was 23 and going until I was just hitting my 40s, acupuncturists, chiropractors, cranial-massage therapists, naturopaths, osteopaths, and healers of half a dozen other modalities were the most regular people in my life. I tried everything to rid myself of chronic uticaria, hives by another name, headaches, muscle pain, to increase my energy for living, to cope with my home life problems, to increase my ability to digest, to understand my life. I came to understand that they were a crutch to me, now and then, and would pull back, only to become so sick that I had to return again.

Occasionally, I went to Western Medicine and occasionally I got a clear answer -- like "Hashimoto's Thyroiditis," but for the most part I got crazy suggestions from Doctors with Doctoral Degrees! For instance, one doctor took a look at my body covered head-to-toe with hives, and suggested that I needed to get pregnant. I was only 22 years old, not yet married, and it wasn't helpful. I'm not sure he was really thinking about my hives as he had a peculiar bulge in his pants, but it was voodoo enough for me to switch doctors. That's how voodoo works, if you pay attention.

I tell you all of this only to point out, that I have worked both sides of the fence for health - holistic medicine and Western medicine, and have come to the conclusion that holistic medicine is very helpful for chronic conditions mostly and Western medicine is very helpful in a crisis, and sometimes that isn't true. For instance, I assumed when this brain tumor was diagnosed six weeks ago that it was an acute crisis. I didn't understand that it was a chronic one. Even though I've probably had this thing for nearly 20 years, it hadn't been the obvious cause of my health problems...or had it?

What I thought was that it was acute enough that the doctor would rush me into surgery in a short time and then I'd be out and fixed. I had full confidence when this thing started that it was a mechanical issue, and that it was fixable. I forgot years and years of training that indicated that if you pull a string in a sweater, it can unravel, and before that it can pull the entire sweater out of whack. I know all that, and I just blanked it out. It did not occur to me that the doctor did not view this egg in my head as a problem of enough magnitude that he had to rush.

It never occurred to me that the medications they were putting me on to prepare for surgery would break down my confidence and remind me that Western medicine is not always the best route. I thought this is a foreign body that must be removed. Would you think any differently? But, this being a hero's journey, it could not be that simple. It had to remind me of who I am, and what I've learned in my life, and demand that I retrain, make better plans and strain to get a better understanding of the rules I'm engaging in to have this thing taken care of and get myself on the road to recovery.

I feel a bit like I've been whacked on the back of my head! I've had a fever of over 100 for three days, have intense muscle pain the minute the Tylenol has reached its 4-hour zone, and am covered with a rash head to toe which feels like hot pin pricks, and looks like I've been nude sunbathing I'm so pink. I can't sleep more than a few hours, and when I wake up I am drenched. VOODOO! This is the third anti-seizure medication that they've tried for me. The neurosurgeon's nurse said, "I don't know what we're going to do with you, Amanda." That always builds confidence.

Truly, I have been resisting not having this work as I wanted it to work out. We are not wealthy people, and I know from experience how much multiple weekly visits to various holistic health care professionals costs. Whereas all of the Western medicine that is torturing me is paid for by insurance, the holistic care that I need is uncovered. I am being forced to up my engagement in this process just when all I want to do is lie abed and be soothed. That's how a hero's journey goes every time.

Lavinia Weissman, of The Story Of Meaningful Use, a health intuitive, has been advising me for weeks as to what alternatives are available to me, and I have been immovable in my stubbornness to let Western medicine do its job of healing. Har. A lot of heroes are stubborn about hanging onto their flaws. I just wanted that journey to be over, but now I see that it is simply my journey and the longer I resist it the worse all of these reactions are going to get. I get it. Sigh. Grr. I'm angry about it still. I don't understand why it is my destiny to have to seek alternative paths, but I accept it. I'm not even sure that I'll be able to change course in a meaningful way soon enough to be able to have my surgery as scheduled this Friday which just is so messed up, I can't tell you. I've already lost my Thanksgiving break with my kids, and I don't have the energy to take it back even if I can, because I'm not having surgery because I'm having terrible reactions to the medication I need to have this surgery. Sigh.

Yes, I'm a bit grumpy about this turn of events, but in retrospect, I shouldn't be surprised. This is a journey I've been on my entire adult life, and I'm still trying to get to the point of thriving and balance. I am also laughing at myself in wonder. How can it be that I thought I was finished? I am still alive.

Wednesday, November 2, 2011

Nine of Vessels

Those moments of self-knowing can
Be full of pleasure and indulgence...
When I realize that the most precious
Vessel I have is this body, for it allows
The enjoyment and use of all the others.
If I were to float above it with orders
To leave, then I would understand all
The petty criticisms I endured from my
Own mouth were absurd to the extent
Of cruelty and the need to feel points
Pain unnecessary. I love this container
Finally, upon this threat and understand
Its imperfections are in fact perfection
Embodied, unique and sensually a delight.

copyright (c) 2011 Amanda Morris Johnson

Nine of Tools

Sometimes it is the horror of self-revelation
That gets me to change, if I will only open
My own eyes and look at the situation I
Got myself into by using my life for servitude
To a faceless slaveholder. For the use of
Humans is by far the greatest and most
Utilized tool of all the ages. The question
Always remains, who put the chains on me?
Was it accidental or purposeful? Did I turn
The wrong way and now these consequences
Unfold around me?  It is surely the worst
Nightmare, but if I wake up then I can begin
The road to freedom and break these chains.
I courageously take the first step and look.

copyright (c) 2011 Amanda Morris Johnson

Nine of Light

Often the moment of enlightenment
Calls out the absurdity of my plight:
I drag around the bandages of old
Wounds as if they are important and
It finally occurs to me that I have been
Surely burned but my true burden is
Burnout from the discussion of what
Was and now is the moment of aha
When I step forward and admit that
The scars are merely decoration that
I earned in battles' story and now, here
There's a chance to be free of all of that.
Will I stop hiding the dimples and silver
And shine in my own gorgeous light?

copyright (c) 2011 Amanda Morris Johnson

Sunday, October 30, 2011

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 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

Thursday, October 27, 2011

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!

Wednesday, October 19, 2011

Head Long into Health

Two weeks ago I landed in the hospital because, I the writer and communicator, spent a good long ten minutes speaking in gibberish. I could not get the words from my head to my mouth in any way that made sense, and I knew it. It was embarrassing because my husband and I were at a party meeting and greeting his new colleagues in a new job. I was supposed to be playing "supportive wife" role. There I was saying something like, "The beer snake flew smash nut Pho dog food," when I was trying to describe a simple place. I thought I was having a stroke, or had finally gotten full-blown Alzheimer's disease.

It went away, but I was stunned and the next morning after much delay, I decided I had just better head over to the hospital to make sure I wasn't building up to a bigger stroke. You may wonder why I didn't go straight to the hospital in the first place. That's probably why I'm writing this blog because it is a warning to take symptoms seriously, take oneself seriously and, you know, take care of business for oneself when it comes down to it. 

Those who have known me long will know that I'm the person who has the strangest, least explainable illnesses.  For instance, for years I was covered head-to-toe with chronic hives, red itchy welts all the time (and I do mean all the time) for years on end. After initial panic about these kinds of things I grew used to having things wrong, made jokes about them, tried a gazillion diets, supplements and medications all to no avail. In fact, I simply made myself used to my body glitches. I've had a gray, dirty-laundry-in-my-head headache for so long that I've written it off as par for the course, part of my life here on planet earth. I've longed for the invention of a brain rinse. I've got a patchoulus eustation tube that sounds like I'm underwater on the left side of my head all the time. I'm fatigued a lot of the time and have aches and pains that are not explicable by my Hashimoto's Thyroiditis (who has a disease like that?) killing off my entire thyroid and leaving anti-bodies swimming through my blood. So, you know, with all these little things going on all the time, I've gotten a sort attitude about not feeling well that goes like, "Yeah. Big deal. Another thing."

It turns out there is a reason for all of this. I have a brain tumor. After sending me through an MRI at the hospital the Doctor arrived in my little waiting room breathless to announce, "It's benign, but you need to take an ambulance to St. Anthony's right now and have an operation."  Huh? So, it wasn't a stroke or Alzheimer's. He shot me up with some steroids and the friendly ambulance guys got me off one gurney and onto another lickety split. Brain surgery. I talked all the way down. I felt so relieved to have a clear answer, a removable answer. The whole thing was strange.

Because I was so chitty-chatty everything slowed down. I looked nothing like I was in the emergency of my life, I suppose. I had time to send out emails on my Droid. "Hi guys, just letting you know...I have a brain tumor." They came in and asked me to touch my nose and follow the light and say things. Nope. No gibberish. Everything slowed down. They hooked me up to machines. They took my blood. They came and looked at me some more. They sent me through a CAT scan and an EEG. They threw up the MRI images and there was the rather large grey egg sitting on the outside of my brain, and inside my skull, an intruder causing swelling, but not reaching into the grey matter of my brain apparently, and they decided that surgery could wait for a more elective time.

I went home on day three loaded up with pharmaceuticals that were supposed to keep everything under control and shrink the tumor so that it can be easily removed. Unfortunately, now it has been two weeks of relatively very little sleep, and I've got two to three weeks to go before they actually remove this slug of my past. I feel I might be going mad as a hatter. My hands feel tied. 

Then tonight, after two restless hours of tossing and turning I got up to address the thirst and wakefulness by cleaning my kitchen again, and it occurred to me that I'm having a temper tantrum and a whine fest in spite of my best efforts to be courageous and cool about this whole thing. During all of those years of mysterious illness, maybe it always came down to this lump in my head, and what did it all mean? I'm in a state of self-examination again, but this time loaded with some strange ray of hope that it isn't my imagination finally. Yet, my arms are folded in anger. All those years! Taking care of myself on those gazillion diets, supplements and endless treatments! I'm sure I sent someone's kid to college once or twice. 

The thing is on my communication center. For the last several years I have been struggling with words, with phrases on the tip of my tongue disappearing before I could spit them out. I have been struggling with timing. I have been feeling I'm losing my mind's accuracy and clarity. Obviously, my brain has been working overtime to compensate, and now what? What happens when it is no longer there? Will I be able to write at all? Will I be better? These are the great unknowns of the moment. Where is Dr. McCoy and the brain operating machine for "Spock's Brain," when you need him? Not that I'm Spock, but I'm just saying'!

I expect this sounds like a tragedy to some of you, but I feel blessed on many levels. I am finally insured and can take care of this, thanks to my lovely husband. I have a clear prognosis, since it is outside my brain, and even if I have to have some radiation to stop any growth that looks messy the neurosurgeon feels he's not going to be cutting brain matter with any scalpel. That makes sense to me. Apparently, they put little silicone donuts on my head and get a GPS satellite image and cut a little incision and remove it like a gallbladder. So, maybe I don't have Bones, but things have improved in the science and execution of it. 

The main thing is that now I have to get over my tantrum about it and start taking care of myself again because what I'm aware of acutely is that somewhere along the line of the last few years I gave up hope of ever really feeling that good again. I'm beside myself, that actually, I might just feel a helluva lot better soon.

That's my news of the moment. I'll be updating here from time to time, just to let you know how it goes. I was going to do a CaringBridge site, but their server moves to slow and I'm too impatient. I welcome your prayers and thoughts, good vibes and light, but please don't expect a lot of personal messaging about this because after just two weeks I'm at maximum capacity for explaining it in more detail. I hope that doesn't sound awful, but this blog will serve as the curation of information for me. Trust that I'm addressing my needs to the very best of my abilities and using this, as every opportunity, to write and examine life. Who knows? Maybe I'll be more brilliant. Grin.