Thursday, July 9, 2015

Happy Horse Manure

Today I'll clean the bathrooms. Today I'll mow the lawn. I'll take out the compost and go to the store. I'll play Minecraft and have sword fights and gun battles and snuggles and movies. I'll have a glass of wine. Tomorrow I'll catch a concert and then have some folks over.

Sometimes I read my posts and think, "Do people believe me? Do they believe that I really see everything this way, or do they think this is phony cult-of-positivity bullshit?" Heck, sometimes I wonder if life is really that good.

But it is. It really is.

Do you know what happened a year ago today? This:

I still don't know the young woman whose bone marrow cells are in that bag. I won't know her name for another year. Another year from today. I won't ever know if she saved my life. The crazy thing about my transplant is that, when I went into the hospital to go through that hell, and truly it was, I was healing. I was in full remission, and I felt great. There was no certainty that the cancer would come back without the transplant, and there is no guarantee that it won't come back having had it. The numbers favored the procedure, but we've gotten so blinded by statistics in medicine that many have lost sight of how little those numbers actually tell us about what diseases are and what makes people susceptible, or sick, or well. Cancer treatment relies heavily on prayer, and the doctors are praying as hard as everyone else. I came very, very close to not having the procedure. Closer than most people in my life know or would have wanted to know.

But I did it. In the end, I did it. I did it because I wasn't going to have all the answers ever, and so I closed my eyes and picked a door. I'm still here to tell the tale.

I know how many times I nearly died. Three. The first time was when I went into septic shock. The second time was when I had pneumonia. The third time was when I developed venal occlusive disease. Every round of chemo is a reckless dalliance with death, a brutal obliteration of the life force and then a tenterhooks tiptoe of apologies and beseechings that it will recover and forgive.

What a gift, the opportunity to experience, to know, how fine an edge is on that knife, how fragile and robust life is and how filmy the veil that sways between. And then to clean the bathroom!

For a long time after my transplant, the doctors told me not to eat uncooked foods. They told me not to clean the bathrooms, or to mow, or to vacuum. They told me not to go to stores, or concerts, or parties, or to drink wine. Every time I do one of those things, it is something I have back, something new and shiny. Every game of tag or darts or Minecraft is a second chance, a third, fourth, fifth, sixth.

Every pile of manure sits atop a vein of gold. Every shovelful I take digs down to diamonds.

Happy Rebirthday to me!

Saturday, May 23, 2015

White Knuckles

Sometimes the walk is longer than the pier
Things don't happen for a reason. Rather, things happen, and then the story I tell becomes the story of my life, and the gorgeous tapestry that materializes is woven of all the threads. It is not that there is a reason, but rather that every moment can be part of the journey to my higher self. In looking backwards I must guard against confusing causality and consequence.

I crowed a few weeks ago about my excellent healing powers, and then had to eat that crow when I went under with an ear infection. I'm on antibiotics and they are working well, but I had a few moments when I was trying to get over it on my own that I got pretty scared. I wondered where the razor's edge is, whether I am more likely than anyone else to slip from superficial infection to fatal brain inflammation.

As I posted in "Are You Listening," my dynamic with my doctors is sometimes a lonely one. Because I do not feel that they are necessarily on my side, in the most important way, I don't always believe that I can trust their advice. Maybe it is because they have gotten used to death. It seems to me that, while they want me to do well, the transplant doctors would rather have me feel poorly for reasons that fit their ideology than to feel well outside their box.

The suspicion that doctors, especially in research institutions, suffer from a profound level of confirmation bias is borne out by the recent statements of the editors of The Lancet and the New England Journal of Medicine that much medical scientific research is skewed and inaccurate due to myriad conflicts of interest. This is a radical assertion, but the sources are well-positioned to know and history supports the thesis. Once something is an institution, perhaps it is inherently corrupted. The razor's edge is not necessarily a bad place to be.

I don't mind that, really. I expect doctors to be human. I expect politicians to be human, as well as every other human. What I resent is when humans attempt to usurp to themselves super-human personas as keepers of the gates, superior beings who are more capable than others of acting outside of self-interest. An expert is a librarian, calling on an advanced set of tools for presenting the most current information, but they are not always honest with themselves about their filters or limitations. It is difficult to be. Of course, they are perfectly willing to admit to fallibility when called out or caught out, but there is a difference between the silver-tongue that speaks the right words and the heart that is humble.

Humility is a hard thing, too. A person requires a shell to be in the world, something to protect against broken nakedness, and yet I cannot connect, cannot grow, cannot live and die having been in the world as the peace I wish to see without some essential vulnerability that makes me human, and real, and authentic.

I found myself naked, and shaking with joy, one morning. I found that the fear had fallen away. It was as if my ego had shattered and turned into a million prisms. I don't quite know what happened, but I know it happened because my ear was exploding. It would be a mistake to say that my ear had to explode for my ego to splinter, and yet it is accurate to say that the shards of my former suffering have become jewels because my ear exploded.

There is no reason life has to be hard, but sometimes it is.

I was talking to a friend at a party the other day. She is recently divorced, and it has been very difficult. During yoga class, she was doing a perfect head stand, and her instructor came over and said, "When are you going to stop white-knuckling your life?" "But it's a perfect head stand!" she thought. The implication, of course, is that one should just stop clinging, stop hanging on, stop white-knuckling.

Nice work if you can get it.

Sometimes I need to white-knuckle. The trick is to hold the right handle bars, to close that fist around the right thing. It's true that I can make myself crazy, and sick, by clinging desperately to fear, to anxiety, to blame and anger and desire. There is something to grab, though, and hold as tightly as I can. I can trust. I can trust until my teeth rattle. I can trust that the tapestry is weaving itself.

Sunday, May 17, 2015

Wallace's Prayer

Every night, Wallace tucks me into bed with this prayer:

Promise nothing bad or scary is going to happen to any of us tonight?
Pinky swear?
Nothing is in this house or is going to be in this house?
Any sounds I hear aren't going to be bad or scary?
It's going to be absolutely fine?
This is the safest place on Earth tonight?
My entire family is going to be perfectly safe and well?
It's going to be absolutely fine?
Okay Mom, Good night, I love you.

And I can answer yes.

I can answer yes.

Let that sink in.

I can answer yes.

Friday, April 24, 2015

Are You Listening?

Yesterday, I met with my general practitioner about Hashimoto's Disease. I talk to a lot of medical and health professionals. I have an oncologist, a nurse, and a homeopath in Portland, an acupuncturist, a chiropractor, and an osteopath in Bath, a transplant medical doctor and a nurse in Boston. Those are the regulars. There are others on occasion, but those are the ones I talk to routinely.
I feel like they really get it right with the doctor's office aesthetic, you know?
So anyway, yesterday. My blood pressure tends to run low, as does my body temperature. This is not a good thing, although the opposite symptoms get the most press. What you want is normal. When I had my blood pressure measured at the office yesterday, it was completely normal. This is unusual for me.

When Dr. Fredericks asked me how I was doing, I told her that my blood pressure was surprisingly normal, and that I was feeling really good. I am aware of the dietary triggers for auto-immune disorders, the key ones being dairy products and wheat, and told her that I find that by steering clear of those I avoid most symptoms. I also said that I wondered if the iodine was contributing to normalized blood pressure, as many say it does (or rather that a deficiency, which causes a malfunctioning thyroid among other things, can lead to low blood pressure).

She just listened, respectfully. She didn't act like she already knew all about it, or get that glazed look in her eye that says, "Uh oh, an informed patient, *snort*," or warn me to be careful with supplements, or dismiss my dietary changes as faddish. She said, "It sounds like that is working for you. Maybe that is what you need." Which is what you say to someone, after you listen to them. Why is this so hard for so many doctors to understand?

The situation with my thyroid is that a routine test indicated Hashimoto's Disease, which is a type of auto-immune hypothyroidism. There's no way to know how long I have had this, but we did a thyroid panel in the fall of 2013 and it came back normal. Hormone testing is an inexact science, because hormones fluctuate all the time and normal ranges differ from doctor to doctor. For me, the important part is that I don't have any symptoms of hypothyroidism, such as excessive fatigue or unexplained weight gain; in general I feel quite good. But you don't really care about my thyroid, and that's not main point of this post.

When I got this diagnosis, I did what I always do with new medical information: I started to do research. I searched around the web for primary and secondary sources on the relationship between bone marrow transplant and thyroid, and about thyroid dysfunction in general. I found online communities of people who have had these diagnoses, and read about different experiences with treatment. I pondered the nature of my experiences for keys to why I might have this condition. In this case, it is all pretty straightforward: my body is integrating a donor immune system which is bound to trigger occasional auto-immune response, and I've been brutally poisoned by medication. Because I reject the PANIC AND MEDICATE zeitgest of most conventional allopathic channels, I gently pushed aside the cannon of their initial recommendations to find gentler options as a first resort. Much that I read pointed to diet and a supplement program called Dr. Brownstein's iodine protocol. There are also some intriguing results with Low-Dose Naltrexone therapy.

When I go to Boston, I know how good I look. I know how good I feel. And I know why, in part. There is luck involved; do not mistake my confidence for smugness. A person can do everything right and still be sick. But if a person does everything right and gets better, it is probably worth taking into consideration what they have done. When I go to Boston I try to tell them, sometimes, what I am doing. My skin is clear, my sleep is good. I tell them about what I am eating, what foods make it better and what make it worse, what supplements seem to make a difference. Sometimes I share with them what I am learning about some of the critical mineral deficiencies that many Americans have that contribute to disease, like magnesium and iodine, and why the serum tests we typically use to analyze those levels might not be as meaningful as other tests that people have developed who have made whole careers of understanding the importance of just these few discrete factors. If I get a rash and they give me a drug and the rash disappears, they credit the drug. What about when I get abnormal markers that get better without medication, but with active effort on my part? Should that merit attention?

When I am sleeping beautifully while so many transplant patients are still struggling, when my hair is thick and soft, when I have the energy and the immune system strength despite being on immuno-suppressive drugs to participate fully in my kids' lives and even get a minor cold and be less sick, for a shorter duration, than the immuno-intact people around me, I might suffer the delusion that the doctors would want to know what I am doing that might help other patients. When I read the bulky meta-analysis of the administration of vaccines to post-transplant patients and conclude that there is not sufficient support for the practice in all situations, I could be forgiven for thinking they would be interested.

Alas, Dr. Alyea is not, and I think he is one of the better ones (I think the nurse is more sympathetic, but she has to walk a fine line). He gets that glazed over, slightly defensive, here-we-go-again posture, offers some bromides and some cautions and a little undocumented fear-mongering (I've asked for these documents, but I never see them, so perhaps they are just anecdotes, and OMG WE CAN'T HAVE ANECDOTES!!! Unless they support the doctor's case...).

In short, he doesn't listen. As a result, I don't trust him as much. I am more cautious with his recommendations. I don't feel that we are really a team; I'm pretty confident that he sees himself as my boss, whereas I see him as a paid consultant.

Many times on this blog I have sung my praises of Roger Inhorn, who is the head of oncology at Mercy Hospital. Roger really listens. He listens as if I have something to say that is true about me and my body. He might not think it is true for everyone else, but he will say (as does my GP, and all my nurses), "No one knows your body better than you do." Ted doesn't say this. I am pretty confident he thinks he knows better.

Because of the way Roger listens, and responds ("This has to be something you feel good about doing. If you don't want to do this, I'd like to be your partner in doing something else."), I listen to him. His recommendations carry more weight. When he tells me an anecdote, he tells me it is an anecdote: his clinical observation from years of practice. He doesn't pretend to know anything he doesn't know, and he doesn't dismiss the idea that there are things he does not know that could make him a better doctor.

Having my ideas challenged is a GIFT to me. My ego will always be there to tell me I'm already right, that I already know, that no one can tell me anything. My ego will always be in my way. Maturity of intellect is in being able to separate an idea from my sense of self-worth, in being able to assess new information and arguments and refine my thoughts without being defensive or broken. A tree can sway in the wind and come back stronger, with the same roots in the same spot but a more complex and flexible fiber of being.

Are you listening? Am I?

Thursday, April 16, 2015

What Emerges

I am not going to write a post about spring. No metaphors of emergence and renewal couched in the language of bursting blossoms shall issue from my keyboard. (Julian Jaynes argues that all language is metaphor, which makes this whole thing very difficult, but work with me).

Last week I went to an arcade. I went to an arcade, mini-golf, go-kart fun park, to be exact. It was the middle of a weekday that threatened rain, and was not particularly crowded. At noon, I drove over to a strip mall to eat a bowl of soup. I even had half a glass of wine with dinner (don't tell Dr. Alyea!). I was in South Carolina, where there is much in full flower and...d'oh! Anyway.

I was not wearing gloves. 

I was not wearing a mask.

I was not reading the labels and harassing the staff about every ingredient in the soup.

I was not tired, or wired, or sore, or hungry.

I was...fine. Normal. Totally normal. Normal like other people think of normal.

Last year in mid-April I was planning to begin my transplant conditioning in May. My friend Dave had just died from complications related to leukemia post-transplant. My donor had not yet suffered the injury that would put me through another round of consolidation chemo that would damage my heart and lungs and potentially render me unfit for treatment. The weather was, as now, just starting to get warm, and I was ferociously recovering from my first two rounds of treatment; attempting to gain weight and muscle mass, bolster my liver and kidneys and immune system, find my center, clear my mind.

I was not going to arcades.

Everyone tells you, everyone knows, that life is just a series of moments. It is so very easy to forget that, though. Perhaps some of my decisions seem strange from some perspectives; they are certainly not staid and conservative choices. I plan to live a very, very long time, but every chance I get to do better right now, to be more connected to the people in my life and less concerned with whether it matters that Lysander is eating nothing but hotdogs or Wallace is staying up all night reading Calvin and Hobbes, is a chance I have to take.

My thyroid is acting up, I guess I have Hashimoto's Thyroiditis now; an auto-immune disorder in which the thyroid under-performs and my immune system attacks the gland. When the doctors told me that initially I was very frustrated. I wanted to be on a linear path to complete health. What is complete health, though? Was I completely healthy in my youth, in my twenties, when I didn't have what I have now? I may have been through cancer and ancillary entertainment since then, but my life is so rich, and the terrain of my body is made of wisdom and endurance borne of blood and sweat and tears. I have never been so healthy, so strong, so at home.

Look backwards. Go be in those places in your memory, and enjoy them, and relive them. But don't ever regret the loss of them, for they are still there, and what is happening now is worth living. Find a Go-Kart track.

 (Check out my renewed daily documentation project over at My Time Lapse Life)

Thursday, March 19, 2015

Hospital Anarchy

Anarchy has a bad name. This is because violent political movements engaging in anti-social behaviors have adopted and corrupted the term, primarily. For this and other reasons, I avoid labels for people, including myself; there are many connotations, contortions and convolutions under any ideological or behavioral umbrella, and the terms become meaningless or misconstrued. The words themselves can have meaning in the abstract, and to that point I quote the Merriam Webster Dictionary Online definition of an anarchist as "a person who rebels against any authority, established order, or ruling power."1 

As I stated above, I try not to apply labels to individuals. Nonetheless, that's a pretty good descriptor for me. I admit it: I have a problem with authority. I always have. Any authority that is not based on purely cooperative, non-coercive dynamics faces a lot of hurdles to gain my acceptance. I could go on and on about where that applies and how far it goes, but that isn't my point here, today. Writing about big philosophical constructs gets unwieldy and impersonal, and there are enough folks out there in the blogosphere taking on those projects.

My purpose here is to talk about what happens when a person who intuitively rejects authority (yeah, yeah, okay, even viscerally and irrationally, at times:)) chooses to submit to the soft tyranny of doctors, hospitals, and the mainstream medical system.

I'm sorry, I could not resist. Clearly.
When the doctor told me that I had leukemia, and that I should check into the hospital immediately for chemotherapy, I wasn't ready to hear all that. Who would be? In so much of life, but particularly within the allopathic paradigm, the default position seems to be "There's NO TIME! We must act NOW!" Fortunately, I was ready for that. A friend who left the nursing profession many years ago had given me a mantra: "There is time. There is always time." I might not have been ready for the news, but I had that tool, and I used it. I told the doctor the truth: I wasn't ready to commit to conventional treatment. I needed to think about my options. I needed Time. While I could tell he was not completely comfortable with that response, he respected it. He respected me.

In a field where so many oncologists might say there isn't time, that I am wrong and foolish and risking my life, Dr. Roger Inhorn did the best, maybe the only thing, that could have set me on my best path: he honored my need for time. When I called him in tears one night and said I did not want to check in the next morning, he said okay. He said that he did not want me to go through any treatment that I wasn't comfortable with. He did not rely on his assumed authority. There I was, an anti-authoritarian with nothing to push against:)

Some people like to be told what to do. I have observed this. I have also observed that many people do NOT like to be told what to do. I don't know which is the majority.

(Permit me to digress for a moment. Remember the blue dress with the black trim, or the white dress with the gold trim?
If you missed the blue dress brouhaha, I refer you to this story Blue Dress. On the internet, arguments raged about what the dress looked like, and then arguments raged about whether anyone should care about what the dress looked like, and then arguments raged about self-righteous posing and taste arbitration, and then...well, anyway.

Me, I loved the blue dress debate. I saw the dress as white and gold, because my brain made assumptions and adjusted the image. Other people saw something else because their brains made different assumptions. The necessary information appeared to be in the picture, but it was not. Who has not been frustrated at another person's erroneous insistence on something that they know to be otherwise? But wait, do they? Is it possible that there are some things we cannot know to be true or untrue, because the filters through which we process the data are fundamental, axiomatic, and, for us, essential and true? The dress is about the importance, and malleability, of perception.)

What inspired this digression, you might ask. I do not like to be told what to do. I do not like it so fundamentally, at the kernel of my being, that I could readily believe that no one likes being told what to do. How easy it would be to be like the protagonist in Vonnegut's "Player Piano," evangelically confident that, if only people could be shown the way out, they would take it! 
Some people do like being told what to do, though. They like the security, they feel more comfortable, they appreciate the rules. For me to assume that everyone wants what I want in life, or operates from the same principles, or should, is arrogant and aggressive. So I don't. For some reason, the blue dress illustrated this for me where my prior analyses had failed.

The week I didn't go to the hospital, I pored over websites and research reports, peppered health forums with questions, paced around, and pulled my hair out. What I discovered was that, if I wanted to try to heal myself from AML without pharmaceuticals, I was going to have to go it alone, because I could not find anyone, anywhere, who had done it. I felt terrible. I had a very young child and an infant, and a husband working full time outside of the home. I did not want to go it alone. I wanted someone to hold my hand and run the show. I wanted to surrender, to submit to someone else's authority.
And so I did.

That is the most important element to the story. I chose to undergo treatment, and take the doctors' advice, intentionally and with consideration for what it meant to me emotionally, physically and intellectually to do so. Coercive force generates an opposite emotional reaction, I find - pushing against, bullying, forbidding, and generally giving a behavior or attitude huge amounts of psychic power seems to beget more of it. Nothing seems to be more effective at making something potent, dangerous, and pervasive than declaring war on it. Consent and compassion have the opposite effect, I've found; they encourage cooperation and partnership and positive outcomes.

Since I already knew that the doctors weren't magic, and that they weren't in control of the outcome, and I chose in handing myself over to their care to accept that I wasn't in control of the outcome, I found myself free to live with the uncertainty, or perhaps with the certainty of lack of control. Questioning authority is essential to critical thinking and examined living, but questioning ourselves on our own assumptions is equally important. We must not allow an internal tyrant to arise, preventing us from finding the peaceful path of accepting life's vagaries and lack of absolutes.

Without the power struggle, I am able to be a participant, and occasionally a dissident, in my doctors' care plan, baggage-free. My transplant team is stiffer than my oncology team, and they have to be, but I roll with it, and roll my eyes when I have to. I have broken the rules, I won't deny it. I have made educated decisions about diet and medication that contradict their edicts. My doctors and nurses know I don't do anything just because I'm told to; they know I need useful facts and that I am going to make my own decisions. For my part, I assume we are in this together, as allies. An adversarial and combative attitude with anyone is the best way not to make my case accessible and appealing to that person.

So what happens to an anarchist in the hospital? She becomes a better anarchist:) She becomes more aware of her filters. She becomes better able to trust the parts of her that allow others to help, and permits them to be right; better able to hear the internal chorus and pick which voices to amplify, and re-examine her convictions. She sees that asking for help, and receiving help, is not weakness.

Well how about that? This post is about being a parent, too:)

Tuesday, March 10, 2015

Where Were You Then?

I am working on a book. It is a memoir, of sorts, and it begins some time in 2010. To write a book, one needs an outline. Well, if one is me, one needs an outline. To write an outline, I need to know what my point is, and what I want to use to build that point.

Perhaps I have mentioned that I am not good at getting to the point?

Look! It's a Christmas Unamog! What were we talking about?
Another problem is that I don't have a huge amount of time for writing. There are these little people, and my job is helping them make the world their own, and I take that pretty seriously. Right now they are giggling hysterically in the other room and whenever I go in there they look at me funny, so I figured I would mind my own business and do a little writing. 

The other day, I went for a walk and I took a picture inside this old stump. It's rare to see the inside of a tree this way, with nothing left of its history except the most recent years. I have been alive for all the time that this tree documents. What have I been doing with it?

I gave myself an exercise, to try to find a way to figure out what is supposed to be in this book. I want to give this exercise to you, because it's amazing.

Pick a moment in your past right before a major event in your life. Maybe it is a joyful experience, maybe it is a trauma, maybe it is both. Joy and true happiness are deep, sublime things. They are awesome. They contain darkness, but are triumphant with light. Like the pain of childbirth, the pain and suffering are easy to forget, to diminish in our memory, when we have turned everything to light. While this is wonderful for survival, it can enable us to minimize our own power and experience as easy, manageable, since we have managed it, after all.

Give your past, especially the painful parts, an opportunity to be big and proud. Let the light shine on it. Pick that point, and start a timeline. Be very diligent about keeping it chronological. Go back in time, to each of the moments between then and now, and write whatever comes into your mind. Allow yourself to feel how you felt, to be in your mind before the liminal events, during them, after them. Give all those moments their due. Expand them, explore them, find any grieving, any forgiving, any pleasure, any grace that you have forgotten.

You have everything you need.