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Friday, November 30, 2012

"Protect and Serve." or "Don't let the bastards wear you down."



Note: This blog was written on Wednesday 11.28., but because I've been wary of offending those who might read it, I hesitated, and since have tried to write it different or "better" in order to let you know what's going on. Instead, this waffling has meant I've written nothing here at all in order to serve that I be seen in a certain way - be "approved of." I've (finally) decided to let it ride. And to perhaps move on. 

Thus, I bring you Wednesday's blog. 

Since I’ve made my decision and told my doctors that I would like (well, “like” is a strong word) to continue with chemo, rather than try my chances at a bone marrow transplant, I’ve had several non-medical people ask me, “Why?” To explain and “make it good,” as one person put it.

I would like to tell those of you who question the decisions of others to “mind your own business, and have business to mind.”

For the last two months, I have been faced with the prospect of an untimely death, organ damage, and infertility to name a few of the biggies. This is nothing to mention the other physical, let alone emotional, reactions. Through this, I have let you know precisely where I have been on my decision, what my fears, beliefs, and convictions were. What the statistics were. What the doctor’s opinions were.

Therefore, to ask another “personal question,” why, pray tell, is it any of your business to press me on something you have no right to know, but which I have already answered in my no-(or very few)-holds-barred writing?

On the phone with my mom earlier, I was speaking with her about another situation in which I was being asked to defend my position. In which I was being asked to defend why I was expressing a boundary. Why, Molly, are you putting up a boundary against me, tell me, Why?

Because I can.

Because I rarely have before.

Because it’s time, as I’ve written before, for me to believe that my needs and my self are worth standing up for.

Because that’s what adults do.

We protect and serve ourselves on every level. Currently, that looks like asking the right and available people to help me out, instead of going to empty or oil-soaked wells for water. Currently, that looks like defending myself in a way that is firm, but not manic.

If I were to defend my decisions with rancor or aggression, then perhaps I’d have something to look at. But, if, as I am desperately trying to do now, I am defending myself with a calm and firm conviction in the belief that I am worthy of protecting, then that seems a worthy effort – not battle.

Perhaps this all sounds rather vague, but the point is that I am in contact with humans. You are in contact with humans. Sometimes they step on our grass, and we ask them to back up, and they do. But sometimes we have to throw that electric invisible fence a few amperes higher.

A friend once told me that with some people, you put up a boundary once and you never have to address it again. Some people, you have to put it up every time you’re in contact with them. … Sometimes, you choose to not let them on your block anymore.

This morning I heard something funny. "Fool me once, Shame on you. Fool me twice, Shame on me. Fool me three times, I need a 12 step program."

A lot of us have trouble with boundaries. We are learning how to be in communication with people who don’t always, if ever, do what we want. The unfortunate thing is that my priorities are not always your priorities, and this causes conflict.

I don’t feel it to be my priority to explain my actions to you, unless I am harming you in some way, or being inappropriate. I would like to still believe that, for the most part, I can guide my words (and actions) by asking if they are “kind, honest, and necessary.”

I don’t believe it necessary to explain myself to you. And yet, I feel aggressive saying that – my limbs feel charged with agitation as I write it now. I am not used to telling you to get off my lawn. I am used to letting you set up house on it, and retreating inside of myself.

To get out of that constriction long enough to say, Get off the grass, is a big progress for me, and it won’t be graceful all the time.

It likely won’t be graceful at all in the beginning. This is new behavior, and like a new dance step or chord change, they aren’t skillful at first. So, I might at first tell you to F off. Or I might hurt your feelings by being aggressive in my defense. Or I might hurt your feelings by not replying to what might be a genuinely open and concerned question from you about my path in life.

But. It isn’t any of your business. I lay myself out here because I like to. Because it gives me a good feeling to write what’s on my mind and in my heart. Because I do like to share with you what’s going on with me.

Is this to say that I can take praise but not criticism? Well, I suppose for now, Yes. Because what it currently feels like is I am finally allowing a sapling of self-esteem to crack the surface of the earth, and a wind that smells of criticism feels like napalm. I am not yet strong enough in my belief in myself to weather criticism.

It might not make for a very useful person yet, but I have no doubt that each time I defend myself against the foul winds, I am building more esteem which will nourish the plant, and the process will continue to enhance the being who I am.

I don’t only want to be emboldened by defending myself though. I want to be emboldened and strengthened just as much – actually, in fact, more so – by my positive traits, as reflected back to me from myself, and yes, from others.

I don’t live in a vacuum. What other people think of me does have an impact on me. But I am seeing that the time it takes me to remember who I am from the moment when it is called into question is getting shorter and shorter. And that’s just over the last 2 weeks ;)

Besides, I guess the marker of this is what Patsy always tells me when I want to give unsolicited advice, and I offer this to you, general public:

Are They Asking You?

Most usually, the answer is No.

Tuesday, November 27, 2012

WHAT is your name? WHAT is your quest?


Yesterday, I told my oncologist that I’ve decided, against medical advice, to continue my Leukemia treatment with consolidated chemotherapy instead of a bone marrow transplant. Then, I watched 5 hours of t.v. dvds.

Last night, after I washed my face, and was drying it off in the towel, I buried my face in it crying – What am I going to do with my life? How can I change this? I don’t want to watch 5, or as on Sunday 7, hours of tv for the rest of my life – how can I change? I don’t know how to change this (yet).

This morning, my friend Patsy called me to follow up on our conversation from Sunday morning where I read her some of my fears around a punitive god. Believing that if I were learning my life lessons properly, a) I wouldn’t have gotten cancer, and b) now that I have cancer, if I learn them properly, I won’t get it again.

That perhaps I don’t believe in a punitive god precisely, but a rewarding one, which, is the same coin.

I told her that I don’t really feel that way, though. That although I somehow have this concept of an external god, which is something more like the old, white bearded man, aloof and judging, I actually believe in what it is I tap into when I meditate, where I find grounding, a center, and a river of boundless love. That’s what I believe in, and trust in. To quote my friend Renee, All the rest is static.

However, watching 5 or 7 hours of t.v., and eating my way through my day is not how I want to spend my time either. Whichever kind of Power there is or is not. I am, and I imagine most people are, not content to just do nothing. I need a purpose. I need a quest.

Sure, getting healthy is my quest, but there’s only so much “resting” I can do, and I’m not spending it making art – I’m not inspired to right now – so I need something else as I await my readmission into the hospital next week. 

So, with all the magazines that are now coming to me, this morning as I wrote my Morning Pages, it came: I could host my Creativity & Spirituality workshop.

And just as quick as that, I sent out the text to a few local ladies, and lo, there is a workshop.

Already I feel better. This is something I know how to do. I know how to host things, be they a party or a workshop or a day at the amusement park, I know how to organize. I also know how to facilitate this workshop, having done it several times before. It’s time for me to flex the muscles of things I know how to do and how to share.

I said it aloud last night as I dried my face of tears, I need to do something esteemable, something that gives me self-esteem. Hosting a workshop wherein a group of women and I explore what blocks and excites us is something that gives me self-esteem. It’s self-serving in that I get to feel good about offering this, and it’s selfless in that they get to take away from it something they might not have gotten somewhere else.

I needed this. Already I’m thinking of the structure of it, if I will change some of the exercises, about going to the store to buy tea light candles for the closing circle. I know how to do this. I am not a useless lump watching Downton Abbey and 30Rock (although, that’s exactly what I was yesterday, and I don’t entirely regret it!!).

There are things that I know how to do. I don’t just have to be a pitiable/pitying cancer patient. I am and have been more than that, and it’s high time that I re-prove that to myself. I can do things of value in this world, however long or short my time here. 

I imagine that I will live to Sunday, and if so, I can help to enhance and deepen my little corner of the world. 

Sunday, November 25, 2012

True Story.


And as we stood squinting on the cloudless ridge, overlooking the Oakland flats and the whole of the sun-reflecting Bay, I realized _____.

And as my sneakers imprinted a pseudo-fossil in the dense mud, and the high notes of laughter pealed behind me on the trail, I recognized ______.

And as I leaned against the door frame and jokingly informed my visitor that I would indeed outlive my cat, the conviction came that _____.

And as I tore another rakishly handsome man out of the GQ my friend had delivered me, I thought to myself, Perhaps ______.

Scanning the scrawled, fading prices written years before and now magneted to my refrigerator door, I considered the destinations, Barcelona, Maui, Paris, and I knew _____.

Considering what would happen when all this was done, I look out over the pages of the 2013 calendar to March, and wonder ______.

Pulling off my stocking cap, exposing my hairless scalp to the high-end thrift shop, and pulling on the ridiculous fur-covered Cossack one, a 10-year old boy grins conspiratorially at me, and I internally affirm that, Yes, ______.

Brushing popcorn crumbs out of my bra as the credits roll and my companions break down the ending, I smile, recognizing that maybe, just maybe, _____.

Three neat packages stood angled at my apartment door, and as the giddy curiosity flushes my veins, ______.

Peeling the aluminum foil back from the paper plate, the pecan pie sat tempting and glutinous, and I figure, ______.

And when my friend tells me, as so many have lately, that she loves my blog, that my writing invites her to examine her own life and choices, that indeed I already am doing something with my writing, I allow myself to hold the compliment and to fully acknowledge that _____.

Saturday, November 24, 2012

Equal Opportunity Seeker


I’d just texted back a friend in San Francisco to confirm our day plans to hike in Tilden Park. I placed my phone on the breakfast table, and reached down to scratch between the ears of my cat. Unbidden, I said softly, “I love my life.”

Unbidden, unpredictable, and surprising to even myself, this is what came to and out of my lips.

Whether temporary or not, I feel that I’m turning a corner on my attitude toward all of this – this “illness” thing. Perhaps this feeling is the result of the work I did this week on releasing old mental blocks. Perhaps it’s a result of having made a decision on which medical path I will take, and thus I can stop aching and hemming about it – allow myself to leave myself alone about it. Perhaps it’s a result of letting my father go, his behavior as a dictate of how I feel about myself and interpret myself in the world.

Likely, it’s all of this, and some dash of that magic called “Time.” Or, perhaps, it’s simply a result of all the people I have praying for me:

My friend’s father is a Baptist minister; he’s praying for me in his church.
My friend is a Sikh, and she prays for me.
My aunt’s friends are Hindu; she’s got them praying for me.
My friend’s mom’s best friend is a first-grade teacher at a Catholic school, and a whole school room of 5 and 6 year olds fold their hands, and bow their heads to pray for me.
There's a mass being said for me by a Cardinal, and my friend asked if she could pray the Rosary for me.
My Jewish friends, ranging from Reform to Chasidic rabbis, are praying for me.

Plus all the people who are generically spiritual, plain agnostic, or atheist, who're sending me healing and healthy thoughts.

I think I’m only missing Mormons and Muslims from the major religions! Perhaps this all is why I’m feeling generous with my optimism today. Perhaps it’s simply because I’m awesome ;) and I believe in the power of believing.

Last week, I saw a practitioner of EMT (tapping). This week, I’ve seen a holistic chiropractor and a depth hypnotherapist. Next week, I will see an acupuncturist and a reiki practitioner.

Besides which, medically, I’ve gone and had a blood transfusion, a platelet transfusion, and daily injections of blood thinner.

I burned some sage and bought a tourmaline bracelet to boot.

Pile it on. Who knows what is “working,” what is not. Doesn’t much matter to me, honestly – as long as I can feel that I’m taking action around getting healthy.

I bought a cross. (Don’t cringe.) I bought this gorgeous silver and turquoise-inlaid cross ornament. It has not much to do with the traditional symbolism of it, of Christ on the cross, and my burdens being carried and sins absolved by him. It has more, for me, to do with the beauty of the symbol itself, as if I’d hung Tibetan prayer flags, or the painted Ohm a friend sent me. It’s actually the second cross I’ve bought, having purchased silver with turquoise cross earrings a few years ago – I just love the way it looks. The shape, the contrast of colors. But, too, I won’t deny that, yes, indeed, it is a spiritual symbol, and I’ll take it.

When my mom was in town, we lit Friday-night Shabbat candles from a “Shabbat travel kit” a friend gifted me. We lit the candles, said the prayer in Hebrew, and then even said one over the challah (bread) we bought that morning. Cuz, why not?

I’ve begun reading a Deepak Chopra book, having thought that I’d actually ordered a Pema Chodron book, neither of whom I’ve read so far, but both I’ve heard the praises of. The book is A Path to Love, and emphasizes love of self, and love of G-d, which he points out is the same.

I bought a book of multi-ethnic blessings – compiled, surely for Thanksgiving consumerism, as the blessings are for the “meal” table. But it’s not only about harvest, but simply thanks and gratitude; plus there are some funny ones too. (“Rub-a-dub-dub, Thanks for the grub” actually made it into the anthology!).

I am a spiritual buffet gorger. I will happily lean on and grab for and explore whatever it is that may work. I won’t ignore the place of modern science and medicine, although I am already beginning to dread the third round of chemo which will begin in about a week. But, I will hold on to these other paths and ways and thoughts and inspirations to bolster me and harbor me as I go through the rigors and fear of dripping poison into my veins.

With all of it, I still am scared, yes, but how would I be without it?

Friday, November 23, 2012

A Morning Exorcise


Other pens will capture records of yesterday’s Thanksgiving events, and I hope yours was as wonderful, and impossibly filling as mine.

However.

Yesterday morning, a friend of mine came over to do some spiritual work with me. She is a certified depth hypnotherapist, and I too would have been dubious, if I didn’t already know the tangible results my work with her brings. So, as with movies, suspension of disbelief will be important here in your reading.

I’ve worked with my friend before, and we’ve done some significant work, but it’s almost like, Whoa, buddy, can’t do too much of that (excavating, exploring, expelling, exorcising), as it’s a little shocking to the system. So, this was maybe the third time I’ve worked with her one-on-one, though I’ve been to numerous workshops and retreats with her, and much of my spiritual practice has been informed by exercises we’ve done, and teachers that she follows.

So, I knew I was in for it yesterday, and I knew I wanted to be. You know by now that I don’t think cancer, my cancer, is random. That I believe I am to be learning lessons from it – however kicking and screaming and despairing I can be sometimes about having to be forced (or invited, if I’m feeling generous) to learn them.

Therefore, I wanted to get in there, into my soul, and root around for whatever garbage was so stagnant and festering that it caused a rupture to my body’s mechanics.

I told her briefly about my waffling on my medical decision (bone marrow transplant or consolidated chemo), and before she left, she said it sounds like I know what I am going to and want to do, “all the rest is static.”

And then, we got to talking about my dad, and what’s happening there. I will put this out, knowing how painful it is to say, and acknowledging too that this is not the whole of the man, but she said that it sounds like he is willing to harm me in order to have his incapacities not be seen.

I, reluctantly, concur. This is not new behavior from him, and I can trace the same theme with varying incarnations of violence back through my upbringing. She said, when leaving, after our work together, that I ought to “consider how to act with [my] dad in order to maintain this new configuration.” Yesterday, that simply looked like replying to his text for a Happy Thanksgiving with the same. 

(Also, to update you on that front, my dad had continued to call at 6pm each night after last Thursday’s blow-out, and I did not pick up. I did the work with my trusted friend earlier this week, and simply sent him an email telling him that I got his voicemails, and would update him when there was new information. There’s no reason to engage right now. I was tempted to send the original email I’d drafted, which said that when I asked to speak earlier in the day, it wasn’t about the time of day for me, but rather I was asking to have more time, and the potential for quality conversations, instead of 10 minutes before his dinner. – But, my friend asked me if he’s ever shown willingness to have “quality” conversations before, and unfortunately, no. So, why give myself the chance to be disappointed once again, when he’s already shown me he’s not capable. Hence, keep things surface, keep it brief, and head it off at the pass by saying I’ll let you know what’s up when things are up. To which he replied in email, Okay.)

The new configuration was the majority of my work with my friend yesterday.

I told her how I felt like I could only show or be 25% of myself around my dad; that the 75% rest of me was denied, diminished, or hidden around him. It was the 75% I forgot last Thursday when speaking with him. I forgot who I am; who I was.

And the work we did was about exploring this 75% of myself – what was diminishing it to be lesser than I actually am? Most people have heard the term “The Critic” before, that incessant voice that says, don’t try, you might fail; you’ll never have the life you want; other people are better at xyz; if you go out there, you will make a fool of yourself.

My friend asked me as we went through this work how important it was to me anymore that I don’t make a fool of myself? I replied, not very important. How valid was it anymore to have this fear of being my whole self? In current, modern evidence, not valid at all. Do I need, any longer, to protect myself as I had been? Not really.

She asked me to give name or shape to this part of me that knocks out my kneecaps before I can walk. What is this part that has held me back like? I said it was like a silver, robotic looking parasite on the frontal lobe of my brain. She asked me if it was organic to who I was? No, it was not. It was acquired, and it was learned.

We can go into the psychology of it all, and perhaps we all know it, but for me, I know this part was invited in a long time ago to prevent that 75% from being entirely eliminated and extinguished through early trauma. We know why we have it – or to speak for myself, I know why I have it and where it came from, and what it’s purpose was – it was to protect me. But, I am no longer defenseless, and I no longer need the kind of protection that will hamper, hinder, and … as I saw yesterday, take pleasure in harming me.

So, we did some work with this part, like using a crowbar to get air beneath the suction cup of this parasitic thing that has lived so long with me. We explored times when it was helped to be formed, tragic times when I learned that to be myself and to express myself was wrong, and punishable. We explored a time when I did it to myself in my early adolescence, cutting myself off at the knees, instead of someone else doing it. It had become a habit, but never truth.

We explored the time before this Censor was installed. And the levity, creativity, and joy that those parts of me embody. That the 75%, which in reality is just a quashed 100%, is this swirling cloud of colored and laser-light-show energy.

Was I ready to invite the Censor to leave? Could I believe, with all the work I’ve done prior to this, and with all the help I have from seen and unseen forms, could I believe that I didn’t need this Censor to block me anymore?

Am I willing to let it go, and have those places it's resided fill with something benevolent and truthful instead? I told my friend I was scared. I was scared that I wouldn’t be able to handle that responsibility. That I would be too scared to let myself embody all of my qualities. In essence, that this would be an entirely new configuration of myself, and I wasn’t sure if I did have it in me to support myself.

I still don’t know, and I won’t, until I give evidence to myself that I can do it, and that I am worth fucking trying for. I am worth breaking out of the bell jar that I placed around my heart. I am worth announcing myself, and introducing myself to me, and thus to the world.

In the end, I invited the Censor to leave, to extract its little pervasive tentacles from all parts of me, from my brain, my organs, my blood, particularly, with my Leukemia, extracting this poisonous thread from my blood.

I’m not entirely sure what it will look like, what it is looking like to have these now empty places refill and fill with me, and love, and life. But I do know that yesterday I sang. I sang the song my adolescent self sang, the one which she practiced over and over for her Bat Mitzvah, and knew there were two ways she could sing it – I could sing it without the harmony and allow the song to be boring and flat, or I could sing it with the harmony, and try for the notes that I wasn’t sure I could grab but which made it beautiful and powerful and fun. Then, at the time, at age newly-minted 13, I stood at that podium in front of all my friends and family, and I Tonya Harding’d myself: I made the micro-second decision to not go for it, and as I sang the predictable and boring notes, I felt something give in my chest – I knew I’d hampered myself. I knew I had chosen to be small, and to be less than I was because of fear I couldn’t be all that I am.

I still remember it. Acutely. And so, yesterday, before she left, my friend suggested that I sing that song, and I hit those notes. And that I sing every day going forward.

In an article I read recently, the woman said she was encouraged when growing up to give it her all, not so she might then succeed or win, but because then, she would have no regrets. 

Wednesday, November 21, 2012

Flirting with…


…disaster

…danger

…men.

Yesterday, I went to see Lincoln at Grand Lake Theater in the middle of a rainy Bay Area afternoon. It was the perfect and normal thing to do on an afternoon like that. Go inside, and forget the world for a few hours.

I realized, during some moment when I didn’t want to strain to follow the “let’s summarize judicial procedure in less than 20 seconds so that the audience knows what we’re talking about,” that this movie was complete distraction. The moments of engagement = What cancer? The moments of non-engagement = Utter and complete awareness of my mortality.

I’ve heard that all of our distractions, indeed most of what we do in life, is as a distraction against the reality of our finiteness. Many people don’t have the “gift” to be as aware of their mortality as I do right now, and so their distractions may not seem as blatant. Whereas, with me, I am acutely aware of when I’m thinking about life/death and when I’m in a moment not thinking about it.

Distraction comes in many stripes, and I’ve noticed that lately, one of mine comes in minor flirtation mode.

I’m not laying it on thick. Partly because, say what you will about the marvelous shape of my shaved head, I don’t feel the feminine mystique quite as powerfully without the mane and locks. Partly because, I’m not really dating at present, so why flirt with anyone when I know right now that it won’t “go anywhere.” And partly because I don’t have the energy for it. Flirting takes a lot of energy! You actually have to listen to what the other person is saying in order to make some coy and playful response, and, meh, I just don’t have it in me right now.

That all said. It’s been nice to flirt in the low-key, nothing-sought/nothing-gambled way. Though it is quite weird to consider how unfeminine I feel right now. I shaved my head once when I was 21. (Ironically… the morning after I shaved it, I went to the diner with a friend, and the waitress said she was going to ask me if I had cancer until she noticed I had eyebrows and lashes. -- I will let you know that, at present, I still have them both!) ;P I shaved my head partly as a test for the rest of the world (HELLO?? Can't you see past the facade that something's seriously wrong here?), and partly as a test for myself (Am I anything except pretty?).

I knew how to be pretty. I knew how to do make-up from my junior high visit with my mom to the Christopher Street MAC flagship in the Village in NY (although, some people reported I got a little overenthusiastic with the purple eye shadow). I knew how to put on the face and the fa├žade and walk in the world like I had a secret self under layers of foundation. Without my hair, I asked then, was I anything else? Without my mask, who was I?

Well, as it turned out, I came to realize part of my identity was how I looked. It felt as though something intrinsic to my being had been sliced off, like my hand, or my belly laugh. 

I carried then, and now, a knowledge of how I look in the world, not out of egotism, but simply an awareness: I've crafted what I am showing you. Even if that “craft” is t-shirt, non-skinny jeans, faded sneakers – the craft there is “I am confident in who I am, no matter what I’m wearing.” The craft there is, “young woman taking a walk in the Piedmont hills.” Even when we don’t care or craft carefully, we’re still putting something in the world. Even if to say, I choose not to craft carefully. We're telling the world something about who we are, and how we choose to be in it.

Luckily, I now know that I am a lot more than “just pretty,” but I also know that how I look in the world is important to me. I want to express my confidence, my quirkiness, my optimism, and my grace when I encounter the world. Though sometimes I'm feeling emo, and I want to express my desire to blend in, or fend you off with a black leather jacket.

There have been two days so far when I’ve gone out without a hat on. I’ve carried one with me, mind you. But I’ve gone out into the world, decidedly unblending, specifically acknowledging that I am expressing, Yes, I have cancer. Yes, I’ve lost my hair. But, by god, I still have the rest of me.

That all said, it doesn’t make me feel sexy. 

And I guess that’s the long and short of it. The flirting - it’s about feeling sexy. And though I may look confident, or attractive, or however I may look to you – I sure don’t feel sexy at the moment. A part of who I am - that feminine, sexy part - is in hibernation, right now, is how it feels - and I miss it, so I notice more acutely when I'm tapping into it. 

To somehow make some point of all this, I’ve enjoyed the mild flirting. I've enjoyed feeling the little thrill in the pulse of my veins - and elsewhere. I've enjoyed feeling that I can still do something fun. That I'm still desirable, and therefore relevant. I've enjoyed, in those moments, feeling that I'm still alive.

I’ve also been tempted to do more than flirt in order to sustain the distraction. But, as tempting as that iron-clad, ensured, for-certain, billboard distraction would be, I know I’m not equipped right now for the fall-out of that – positive or negative. 

(Besides, I really can’t help but recall that bald, scarf-clad woman in Fight Club who pleas with her cancer support group for someone to have sex with her before she dies … she has toys, she begs. … Lord, don’t make me that woman. !!!)

So. Here I am. Finding myself in moments totally engaged in the distractions of the world, movies, men, food, and in moments completely outside the frame and aware of the massive ticking clock.

I imagine there is some middle ground, or as a friend put it, “a third thing.” I don’t really know where that ground is now though. Having had the veil between distraction (read: life) and temporality (read: death) ripped away, I’m not really sure where I’m supposed to be standing.

Tuesday, November 20, 2012

"Within You Without You" ~ George Harrison


A friend sent me the following quote a monk has hanging on his wall:

Who am I?
A child of G-d.

What do I need?
Nothing.

What do I have?
Everything.


In this time of upheaval, my ideas about G-d have been … well, let’s just use the term “Shifting,” to place a mild spin on it.

What is the difference between a stubborn, will-power backed assault, and a calm (or even a fiery) self-assured knowingness?

Does knowledge come from within or without? Is G-d something in me, or outside of me?

Sometimes when I pray, I address “Higher Power, Inner Strength,” as I don’t see the two as mutually exclusive. However, sometimes, like now, it’s hard to know if my Inner Strength is such, or if it’s simply an Inner Stubbornness.

To be unvague, I’m talking about my decision to go with or without bone marrow transplant as a treatment option. Yesterday, I met with my oncologist again, and I told him I was still thinking about going with chemo instead of transplant, and he looked at me pained. We then proceeded to look up a bunch of medical research articles, and the articles report that transplant has a higher “long term survival” rate (if only by 10 or 20 per cent).

I am tired of people telling me I’m going to die. I’m tired of listening to, This is the preferred way. I get that. I do. Am I being stubborn, afraid, or simply intuitive?

How can I know? I can meditate all I want, but it’s impossible for me right now to completely know. Is the decision that I’m making based on the purity of consciousness and understanding of myself and belief in the beneficence of the Universe? Or, is the decision I’m making based on avoiding the path which leads to total body irradiation and irreversible organ damage?

Um, you make that choice, huh? Who can?

Am I simply being stubborn, or am I simply believing in myself?

I don’t think it’s clear or clean either way. I think, ultimately, it is both. And can that be okay?

Of course, I don’t want to make a decision based on fear. I want to account for the facts. And the facts are these: in the end, the chances according to medical science are the same.

But, fuck medical science. It’s not as if I’m being the hippie who says, Oh forget all these white-coat, white-hairs; I will now go cure my cancer with herbs and full-lung breathing at the 3/4 moon. Those methods have been suggested to me by a few friends, and sure there are results on that way too. But, no. I am choosing to continue on a medical path which itself has no guarantees, has its own drawbacks and uncertainties. And, in the end may.not.work.

But what does that mean? It may not work. Every time I think of phrases like this, it licks away at the resolve, fortitude, and demeanor (and demand) that I have that I will be alright. I mean, when you look at it plainly, one route says you have about a one out of two chance you will die. The other one says you have about a one out of two chance you will die.

STOP TELLING ME THIS. I am not going to die. It’s just not what’s going to happen. Yet I’m not intending to be or needing to be some kind of a miracle baby either, having brazened against the odds. I don’t need to be some kind of a pioneer, by going without a transplant – this is NOT to teach anyone a lesson. Except maybe me.

Stop telling me about my death, please, and thank you.

I am a child of G-d. Whomever, and wherever that source may be. There’s a phrase in some literature that states that what we once thought was a flimsy reed (of faith) turned out to be the branch of a mighty oak. I believe I am connected to the mighty oak.

If I’m “wrong,” if this means death at some point, death from cancer – it won’t be because I made the “wrong” decision. It’s not about right or wrong here. I mean, the chances are ultimately the same. It’s not about statistics. I just don’t feel it is.

Am I stubborn, or am I spiritual?

Are the two compatible? … Rarely – take a look at the middle east right now…

But, guys, I just feel it. I just feel it’s the right way. I acknowledge that it isn’t a clean decision. I acknowledge that I have fear of irradiating my body and unforeseeable side effects – even if the point and the outcome is cure. People have told me that it’s about risk tolerance – how much risk am I willing to tolerate?

I am willing to tolerate the risk that by maintaining the current course, it may not go my way. I am willing to do what is necessary to maintain and improve my health so that I have the best chance of staying in remission. I am willing to live in the uncertainty, and willing to admit that I am not willing to step willingly into a nuclear chamber. (like all those willingnesses?) ;)

I am willing to maintain the course of my soul. I am willing to admit to you what I feel, and work out those parts that are still gummed up with resentment or straight, obvious stubbornness. I am willing to learn, here, and more willing to ask for help, which I have begun to do.

I am willing to show you more of who I am. I am willing to cry in public, and yell Fuck Cancer at the same time.

I am willing to acknowledge that the inner strength I have is not some imagined, indigestion-inspired whim, but rather a strength and knowledge that comes from something much more rooted, connected, grounded, and wise than I am. I am willing to listen, but I am also willing to say, Stop predicting my death. Because, doctor, I trust you, but I’ve got something a little bigger going on. 

Sunday, November 18, 2012

Parents, and Transplants, and Lessons -- Oh My!


Hi folks. Apologies for the temporary disruption of your glimpse into my thoughts – mom was in town, and I simply didn’t want to carve out an hour to spend without being with her. Therefore, I bring you – THE EPIC CONTINUATION OF MOLLY’S LIFE.

I will start with the medical miasma, and conclude with the familial one. Enjoy.

On Friday, my mom and I went back down to Stanford, the place where, if I were to chose to have a bone marrow transplant, I would be hospitalized for a month, and then remain in close driving distance for about 6 additional months. This option would require a 24/7 caregiver, or caregivers, for the first month after I’m released from the hospital, and pretty close contact with someone or ones thereafter.

This option also has about a 60% success rate – meaning, “long term survival” – with a match who is a sibling, and we found out on Friday that my brother is indeed a match (Yay). Of that 60%, 20 – 30% of people will get a recurrence of Leukemia anyway.

My other option is to go “straight chemo,” which means the 5 total rounds (of which I’ve already completed 2), and then... Pray. If the Leukemia does not recur within 2 years, chances are that it won’t. 40% of these people have a long term survival rate.

Some of the doctors, and many of the nurses, say that going the transplant route after first remission (which I’m in – Yay…) is preferable to waiting to see if there is a relapse, and then doing transplant. Some of the doctors say that it’s okay to do the chemo, and see what happens, with transplant as the option if it does recur.

I’ve done a lot of writing, listening, reading, praying, talking, and meditating on this decision. Still, I do not have to make it today, but … mostly, I’ve already made it.

Unless evidence presents itself to make me change my mind, I’ve chosen to go consolidated chemo, and “wait and see” what happens. I have felt this to be the right option for me for a long time, and I’ve become more firm within myself about it.

And here’s some of the “life lessons” that are coming from this decision. The reality is that I have no idea what’s going to happen. I simply have a feeling. I have a feeling, an intuition that this is the right course for me.

For those of you who have read me long enough, you know that my convictions are rarely firm. They wane. They waffle. Is it? Will it? Forget it. Here, with cancer, I’m being given the opportunity to make a choice, and then follow it through with every ounce of my belief and my action. It will not be enough to simply say, Go chemo!, and then go back to sedentarianism. (Yes, that is a new word.) It will not be enough to simply go chemo and then hem and haw over whether I made the right choice or not.

To quote a phrase I cut out of a magazine, and stares at me over my kitchen table: Go with your gut, and then give it your all.

What would it look like to give it my all

What would it look like to make a decision that will have ZERO immediate confirmation, and continue with it anyway? What would it be like to have faith in myself and my decisions? What would it be like to believe in myself without outside affirmation?

Big deal. Big gamble. The biggest. Will I be able to show up for myself, and follow through with a courage of conviction – a key phrase here? Remains to be seen. But, I hope that with my life on the line, I allow it to be a big enough risk to show up for it wholly. 

And, speaking of courage, a good segue to the 2nd half of the blog.

I was on the phone with my therapist on Thursday morning, having reemployed her for weekly phone sessions for the time being. We were talking about a conversation with my dad earlier in the week that was bothering me – we were talking about how, to me, he has not been showing up for me as I believe he should during this atrocious period of fright and uncertainty.

She said something which struck me: He is not a courageous man. 

He can be and often is a frightening man, as some cowardly people will be, but he is not a courageous man. 

People have parroted again and again that he’s scared. That he’s scared. He’s scared. He doesn’t know what to do, or how to handle this, and he’s scared.

So. 
The. 
Fuck. 
What.

I’m not? Everyone in my family isn’t? Everyone who’s showing up for me isn’t powerless over my cancer?

On that Thursday evening, I was on the phone with my dad. In fact, I was in the car with my mom, using her speaker phone to speak with him as I drove. He’d called me on my cell phone a few minutes earlier, and I texted him that I was on the phone with my doctor and would call him back. Within a few minutes, I did.

We spoke, I updated him briefly, and then he said he had to go eat dinner. I had already asked him to call me earlier in the day, as this was not the first time this had happened, and earlier is better I'd said before. I’d already asked him to call me more frequently, period, instead of a text every 4 or 5 days. I’d already told him I wanted him to be more involved – and sure enough, he did begin to call more often, but after dark.

So, on Thursday, when he said he needed to go eat dinner now, after our maybe 3 minute conversation, I repeated my request for him to call me earlier in the day. He replied, this was the time he had available. I told him that it doesn’t give us much time to talk. He replied, Well, if you’d picked up the phone when I’d called we’d have more time. (Note, again, I was on the phone with my doctor, and it was merely a few minutes later when we did talk.)

Then, he found his catch phrase, and proceeded to repeat it as I got more agitated with his refusal to budge: "This is how it works."

This is how it works.

This is how it works, Molly, if you want to speak with me, you must do it on my terms, at the times that I have available. This is how it works, Molly, that although I am newly retired and told you I’d be spending these few days doing yard work, this is the time I have available for you. This is how it works, Molly, if you want to have a relationship with me. My terms, My time. No, indeed, I have no concept that others are willing to show up when and where you ask, because you have cancer – nor that perhaps people show up for one another…. even if they don’t have cancer.

And, so, with one more, “This is how it works,” I yelled, “Fuck you! Good-bye!” into the phone and hung up.

I have been on the roller coaster of feeling and processing my emotions ever since. And, I am coming out the other side, back to the anchor and foundation of who I am.

After this conversation, I felt angry, but I also felt guilty. I felt like because I had lost my shit and yelled at my dad, I was now who I’d always been to him – the disrespectful fuck-up. I felt like I’d now, once again, given him evidence that I am the one who is wrong and who has the problem, and once again, he is the saint. He is, as he once told me when I was in college partying mode, Dudley Do-Right.

My father is as close to Dudley Do-Right as I am to Snookie. But a rail against him isn’t really what I want to write here – that writing belongs and is in a very private notebook. ;)

What I do want to express is how that feeling of myself as the fuck-up, as the one who needs to apologize to the man on the mountain-top changed. I went to go meet up with some folks for an hour after my mom and I got out of the car, and I got to share about some of my indignation, that I was flabbergasted, hurt, and supremely disappointed once again. Later, I listened to a meditation tape before I went to bed, after telling my fuming mother that I couldn’t talk about it any more – that harboring this anger in my body is just fuel for cancer. Which isn’t to say I wasn't, or still am not angry – I just had to stop stoking the flames for a little while.

In the end, before I fell asleep, I remembered something: I. Am. Awesome.

I’d forgotten. I’d forgotten that I am a writer whose writing affects people. I’d forgotten that I am a friend who is kind, considerate, and more than a bit kooky. I’d forgotten that I am a brave motherfucker, reading poetry onstage in a nude suit, and reading poetry that would make your grandmother blush so hard she’d sweat. I'd forgotten that I once auditioned with the song "Make em Laugh" and bombed so hard it was hilarious.

I’d forgotten that I am going through the fight of my life with significant amounts of grace, candor, honesty, and humanity. I’d forgotten, ultimately, that I am awesome.

How my father chooses to be in my life has no bearing on my self-esteem. Or, it shouldn’t. For a few hours, it did – very much so. For a few hours, I was deflated and defeated and small. But … That’s. Not. Who. I. Am.

I am much more than any of that, and I finally remembered.

Is it still sad? Yes. Disappointing? Yes. Hurtful, even? Why, yes. I am, after all, human. But am I gaining freedom from the mantle of “the bad one”? You bet.

What I am getting to see is that, for the very first time ever, I have asked my dad to show up for me emotionally. This has not been a veiled or manipulative ask; this has not been subtle. I have finally believed that my needs are important enough to voice them, and I have finally asked him of all people if he could show up and meet them.

And he has told me that he can’t. Finally and clearly, I have asked for what I’ve needed from him, and he has told me no. – There is a freedom in this.

There is no more questioning or wondering if my dad will finally be able to be the dad I want him to be. If he cannot show up for cancer, then he cannot show up for all the other lesser events. And I can finally let him off the hook. I can finally stop demanding that he be the person I want him to be.

Over and over, I have gone to the dry emotional well that is my father, and I have hoped again and again that he would provide. Over and over, I have been disappointed and hurt because he could not.

I am finally seeing that I no longer need to go to that well. I no longer need to hold out hope that maybe, just maybe he’ll surprise me this time. Because, again, if he cannot show up during a time when I need him the most, more than I ever have, he will never show up for the times that I need him less.

The beauty of this, is that I’m getting to pull my head out of this cavernous echoing well, and look around. Over and over, people have told me that they want to help, they want to be here for me. What can I do to help? I have full, functioning, abundant wells as far as my eyes can see, and… finally, I’m seeing them.

I don’t know what will happen here with my dad. I have some writing to do, and discussion with a friend I trust to have before I do anything. But, too, I’ve realized that if my dad were just another person in my life? Well, I’ve had experience dealing with bullies before. I’ve had experience making boundaries with people who are inappropriate or hurtful. If I can hold my dad to not be “DAD” with all its attendant expectations and fictional-world perfection, but rather simply as another human being in my life, then I have a better chance of working this one out. This is not about a father and daughter. This is about a person asking for help, another person not being able to give it. This is about a small, emotionally crippled man no longer being asked to do things that an able bodied person can do.

Ultimately, it’s about individuation, and the reminder, once again, that I am awesome, no matter what.

And it is this “No Matter What,” this conviction that I am worthy, that will allow whatever medical decision I make to be the right one. I will live because I want to and nobody can talk me down from that. 

Wednesday, November 14, 2012

G-d’s Business.


After my first round of chemotherapy in October, my Leukemia went into remission. Now, I’m on a course of treatment called “consolidated chemo,” which is a course of an additional 4 rounds of chemo. Why do more chemo if the cancer is in remission? Because, leukemia is “an aggressive disease.” And, at the end of the five rounds, there is a significant chance that the cancer will, or can, come back. That’s where the bone marrow transplant option comes in.

With the transplant, the doctors will ultimately nuke my immune system to smithereens, and then introduce a new immune system, potentially that of my brother if he is a match, or that of a stranger from the donor registry. This process has a 50/50 mortality rate. And then you have the risk of something called graft versus host disease.

You know when you hear about organs being rejected by someone’s body? Well, this would be the new immune system rejecting me, as I am the foreign body to it. This complication can have no side effects, minimal ones like a rash, or more complex ones like diabetes or death.

In the end, I will either chose to stop after these chemo rounds and see if my body can resist whatever cancer may still be left, or I will chose bone marrow transplant. This is what I’ve meant when I’ve said here that eventually I’m going to have to make a choice that my life will depend on.


A friend told me recently that there are three categories of everything: my business, their business, and G-d’s business. I don’t know how to make a decision like this – therefore, it’s G-d’s business. The result, the outcome, is G-d’s business. However, I have some problems with G-d’s plans.

People have been talking with me about a benevolent Higher Power, a course that wants the highest good for me and all those involved. And, truly, I believe this. I believe in a Universe that wants my greatest happiness and good. The problem is … I’ve seen how that good looks sometimes.

My friend Aaron who died of an overdose earlier this year. He needed to go back, he needed to go home, was what I was told in my anguished meditation on “WHY.” My friend’s adult son recently died from health complications. He had addiction issues, and she felt too that it was simply more compassionate to let him go than to let him struggle. Another friend recently lost her baby in the second trimester, and I can see how, with the surrounding circumstances, disturbing as this is, perhaps it was for the “greater good.”

So, see, this is my problem. That sometimes the ultimate and highest good of everyone involved looks like death.

And I have a problem with that.

As I’ve said here before, I don’t feel done. But, as was written in the Lance Armstrong book, his doctor said that sometimes it's the most active, want-to-live people who don’t make it through cancer, and the ornery curmudgeons who eek on through and make it to a full-length life. It doesn’t matter, this seems to say, what kind of attitude the person has – it’s a crap shoot.

I don’t entirely believe that. I don’t really believe that at all. I do still believe that my aching, pulsing desire to be and stay alive can be my anchor to this world. I do still believe that I have so much more to give and do that it would be the crime of the century to cut my time here short.

But, what do I know. I don’t. Like us all, I’m in the uncertainty of what will happen, and I desperately want to know – Will I die? Will I make a choice that will lead me toward or away from death?

A friend told me, Hey Molly, none of us get out of this alive, and gee whiz, yes, that’s true, we all have a 100% mortality rate and all approach zero at the end of the game, but, will this kill me? I have no idea.

I have hopes, and wishes, and a cat that is currently curled sleeping in my lap on a blue-sky autumn day. But the outcome is not my business. It’s just not. I can look at the losses I listed above and not want any of them to come to pass, and yet know the good, or the release, that came out of the tragedy.

Do I believe somehow that my death would be like that? Fuck no. I am not in anguish, people. I mean, I believe too that some of this came about as a result of a life not fully lived, and that caused me anguish – but aren’t I learning… doesn’t that count? Will it?

What is my business then? Well, the reality is that I don’t have enough information. That there simply isn’t enough to make any decision right now. We don’t know if my brother is a match, so I don’t have to decide right now. If a match comes up, the reality of the choice becomes more imminent. But right now, I have nothing to do but get up, wash up, and go get some blood drawn. Though my cat will not appreciate the interruption. 

Tuesday, November 13, 2012

What’s the use of being a Shaman Warrior if you don’t get paid for it?


Back in June, I hosted a workshop called Creativity and Spirituality. It was the third time I’d done the workshop, the first time for a fee, and only one person showed up. But she, a friend of mine, and I did the workshop anyway, and I learned something.

One of the questions I ask to the participants is, “What is your favorite thing to do instead of being creative?” I’d answered this question myself previously with Facebook, or TV, but in June, I got more specific and I believe to the heart of the matter – Reading about other people’s lives, instead of engaging in my own.

At the time, I was reading memoirs of people on spiritual/redemptive quests and memoirs of comediennes. I read about 5 in a month; I was voracious for them. How are other people engaging in their lives?

This morning, over my plate of eggs and toast, I heard the planes go by again and looked up – the small bi-planes that go over everyday, and I wrote, I want to fly a plane.

This is not a new thing. I think it every time they go overhead – I want to fly. I started to then write, you can’t make a living out of it, and that’s a west coast kind of --, and then I stopped myself, again like yesterday, and just let myself have it – I want to fly a plane. Who cares what for, whether it “works” in the scheme of success that we – I – try to mold everything to fit. I let myself have it, even in daydream, because I want it – not for money or for success, but because I know that I’d love it. Simply for the pleasure of it.

Am I allowed to do things simply for the pleasure of them – without an “end” in mind, without a need for it to be something more than simply pleasurable?

It occurred to me about my wanting to take math classes. About wanting to get an algebra book again, just to brush up, just because I want to. For someone who writes so much about art, etc., it may seem strange, but each time I’ve done “The Artist’s Way,” and answer the question, If you could take any five classes, what would they be?, I always wind up with “math” at the end of the list. As if sliding a note in under the rest of the homework, don’t look too closely, but I think I actually have an interest in something different.

I thought about it this morning, about math, and flying, and learning to play the guitar, not so I can play on stage, but so I can play all those Jewish camp songs I grew up singing – so I can play them for my brother and his kids, like my brother came to play them for me when he visited me in the hospital.

Can I learn to do something, simply because I want to?

I thought this morning about jobs. Professions. Careers. I thought about the desperate and insistent desire I’ve had to “do something” that fulfills me. Is that need as persistent now? With the whole “life and death” thing foremost, does it matter whether I feel complete at a job, or will it matter more that I did a page of algebra that day, simply because I wanted to?

Dunno. I imagine it’s a middle-ground, a gray area of the two. Data entry … cannot be my life. But, I reflected as well this morning: What do I know? What do I know about what can happen in life? I’m a just 31-year old MFA graduate with Leukemia living 3,000 miles from my closest relative in one of the most dynamic areas of the country. Not exactly what I thought would happen when I was 16.

My point is that I am finding wiggle room between what I am doing with my life and what I am doing IN my life. What I am doing for a living versus how I am living.

I can’t tell you how much I appreciate my little studio apartment now. I’ve always valued it, it’s made my gratitude lists, but after being in a claustrophobic, beeping, fluorescent-lit hospital room, this place is like the Taj Mahal. I have a kitchen! Who cares about lack of counter space.

Things that were for granted are not as much, right now. I realize this gratitude itself will ebb and flow as life comes in and out. But, for now, I realize that I want to be IN my life differently. I may not be making Frida Kahlo art, but I want to do more than read about others’ lives (all the time – I make NO promises about not reading memoirs!). But, if I want to read Stephen Hawking’s Universe In a Nutshell simply because I’ve always wanted to, isn’t that worth doing? 

Monday, November 12, 2012

Frida


I was released from the hospital on Saturday after finishing my second chemo treatment on Friday. This second week, my “counts” go down as the chemo does its work, searching and destroying leukemia, as well as indiscriminately destroying other parts of me in its wake. Then, we anticipate, my counts will go back up, cancer defeated again, and we wait until I’m ready to go for round three.

Today, I was sharing with some friends that I feel frustrated that I’m not taking advantage of this time. Why aren’t I working like Frida Kahlo did, using her illness and the time she spent in bed to make art – why am I not making art yet? Why can’t I be like Frida?

My friends laughed at me.

They were shocked that I could demand something like that from myself at a time like this. Last night, for the first time, I puked from the chemo – and I’m not making art?

It’s easier to see it from the outside. It’s harder to let myself off the hook about it. With all that I’ve said about this being the most useful time, and a step off of the carousel of life, and meanwhile, I haven’t written all my thank you cards? What’s wrong with me – aren’t I learning this lesson? Do I need more cancer to carpe diem?

Seriously, M*therf*cker, I need to relax. I need to let myself off the hook. To let myself be precisely where I am. I am home. On a Monday night, after a good day with friends, some nausea, and a nap. I did my dishes. I read a magazine. I got some blood drawn.

Can’t that be enough for today?

I have a friend who recently moved to Paris, and similarly, she is chiding herself for not having gotten the hang of an entire new country, language, and locale in one week. The amount of self-flagellation she does is enormous. And I get it.

I get that we want so much from ourselves. And, sometimes, finally, I get that sometimes we get to walk instead of run toward our goals.

This morning I was writing about all the things I’m not doing yet, and by the end of my Morning Pages, I literally interrupted myself and wrote in big capital letters, “STOP PUSHING ME. I can walk.”

"Damnit, bud – BE A ROSE!" is what this pushing is … and neither nature nor time work that way. I am a bud, if you’ll forgive the metaphor. I can’t be anywhere other than where I am now. Reading on the couch. Not writing thank you cards.

My friends this morning said something else interesting – that the best thanks I could possibly give to those who have given to me is to rest, get better, and to be kind to myself. They’re not expecting thank you cards. One friend even specifically wrote – “Now don’t do anything silly, like send me a thank you card – just reach out if you ever need to.”

That’s it – specific directions. … Her name is on my list of thank you cards to be written.

It’s insidious.

I don’t really know how to sit in the process here, honestly. I feel like if I “take the lessons” from this, then this isn’t all for naught. I feel like if I can make some active changes in myself and my life, then the cancer won’t come back.

I feel like if I can make obvious evidence to the universe that I’m different than when this started … it will stop. The cancer will stop. The nausea will stop. And I can go back to, or on with life.

I’m tearing up as I write that, because I guess it’s what I believe somewhere – that this disease is somehow punitive in its way. I wasn’t good enough, and if I am better, then I will get better.

I “know” the truth is otherwise, but it’s hard to not want to bargain with Fate, and say, Hey, see, change – throw me a bone here.

The truth is, I am engaged in a life and death situation. It sounds dramatic, and it is dramatic. It’s life. That’s what life is. At some point, I will likely have a bone marrow transplant, and whether I sent thank you cards or not to people who asked me not to send them to them – will that matter in the balance?

Will it matter more that I cared for myself well? That I let myself be human, maybe, possibly, for once? When it comes time for some life-threatening procedures, will it matter that today, I actually took out my paints, and painted for me? Not for fame or fortune or Frida?

I don’t want to be an asshole to myself. It hurts, and I can walk. I am walking. 

Saturday, November 10, 2012

Survivorship.


That’s the name of the current chapter in the Lance Armstrong “recovery from cancer” book.

I’ve been thinking about this concept, and besides the things that come to mind about “how will life be different on the other side of cancer,” I recognize, surely, the amazing fact that I am thinking about life on the other side of cancer. The hopefulness that simply contemplating that future embodies. It’s a buoying thought.

But, unsurprisingly, I have been thinking about what things will look like on the other side. At some point, life will take on the trivialities that make up life – washing the dishes, waiting for a delayed bus, making a living, knocking your shin into something, rolling your eyes at your parents’ continued “them-ness.” At some point, it will stop being about the fight for survival, and things will ebb to a different level.

What will that level look like? I am hopeful that it won’t look the same, but of course, in the ways listed above it will indeed. Will I write more? Paint more? Will I move back east? Will I find a different line of work? Will I date?

What will it look like? Will I actually exercise now? Will I be more than I have been, really? Will I take this opportunity for what it’s worth? I have no idea. I don’t think I’ll know till I get there, and I hope to be patient with myself when I am – because no one does change overnight, and there will be a long period of adjustment, of equalizing when this is done, I imagine.

Will I become a cancer advocate? Will I work with bringing art or music to children with cancer? Will I advocate to have them put yoga videos on the TVs in hospitals, so you’re not watching the weather channel or the QVC channel all day? Will my priorities change like that? I don’t know.

One woman I’ve spoken with through the Leukemia & Lymphoma Society as a “peer-to-peer” support had Leukemia 20 years ago, and now works for the American Cancer Society. Will I do something like that? (Likely not!, but I like the idea of being a peer for the next person coming down the line with all their fears and questions.)

I like the idea that I get to think about this.

It’s like a major, massive pause in my life when I get to take stock in a way that I wouldn’t have thought to or had the chance in quite the same way to before.

People have said this is just a bump in the road, but I don’t really see it like that at all. I feel like I’ve jumped the tracks of the life I had before – taken a major left turn, and am no where near the road that I’d been on. I think my road has changed, and I think I’m grateful for it, as I get to take that stock and look at where my life has been and is, and where I want it to go.

Often people talk about wanting to pull a giant emergency cord on their lives, wanting to get a handle on where it is and what’s happening, but usually, we do not have that luxury. There are still those dishes, and that living to make.

With these months of convalescence, I have that emergency cord pull. I am in a suspended state at the moment. I get to look over it all, and see what changes I want to make.

There are a lot of “Will I…?”s in my Morning Pages this morning. Will I be different, advocate for myself, will I rent an art studio space, will I move back east, will I go back to my same job, will I be able to afford my student loan bills, will I find the support back east that I have here – will I really be different? Or will all of this fade into a bad episode, really fade into a bump in the road, rather than a game changer? I don’t know.

I won’t and can’t know, but I think contemplating it is a good beginning to helping the change come to fruition. I don’t want to fade into the sameness of before. I think it’s a lesson wasted. And a cosmic shame to dismiss or ignore what is a steel-toed kick to the soul – or mind, rather.

I don’t know what Survivorship will look like to me. I am in so many ways still in the middle of the current process. But I do want it to look different, and whatever they may say about roads and intentions, I’m going to try to keep this one. 

Thursday, November 8, 2012

Perseverance


I started this blog yesterday, with the title only, so, here we go again.

I’ve been reading the Lance Armstrong book It’s Not about the Bike, which someone leant me when I got into the hospital. Whatever might be happening in the world with him and his accolades, I’m more interested in the story of a man who overcame long-shot odds against cancer.

And the book is quite good, thanks, I’m sure, to his writer.

But, as I was reading it, he writes about getting on his bike even as he begins chemotherapy. That if he can just get on his bike, he can beat it. If he maintains some semblance of his old life, and his old sense of control, then he can control cancer. That if he can persevere through this by sheer will alone, all is not lost.

And, healthy or not, deluded or not – I like his line.

It’s only the first few days for me being back in hospital on my second round of chemo, and the first week is usually quite easy (she says with all her experience). It’s the second week when all your blood counts go down that you get that pallor and weakness we associate with cancer patients.

So, I’ve been walking around the veranda in the morning. My perseverance. I remember the first time I was here, there was a woman who I saw flaming past each day, pulling or pushing her IV pole, but each day, as I sat sick and listless in bed, I watched her fly past my door on the veranda, and was judgmental and jealous. Who does she think she is – outrunning this thing – how come I can’t do that – here she comes around again, the show-off. But, now, having the energy that I do, I get it.

There is a sense that if I can only move, I won’t be caught. If I can get my street clothes on, I’m not as bad as all that.

But, more what I wanted to say about perseverance was this:

I have never had to persevere in anything. As a relatively intelligent person with no real encouragement to excel from home, I have skated along on half-steam for the majority of my life, and done well enough. Adequately, as my friend would say. My life has been adequate. Nothing extraordinary, I haven’t pushed through any barriers or boundaries, and have generally continued to plod along for as long as I’ve been alive.

I haven’t needed to excel. I haven’t needed to persevere. Until now.

With each creative endeavor, as you know by now, I pull back at some point. Painting, acting, writing, singing. I will spend a few months active in pursuance of these interests, and then wane. I will talk myself back from it, in any number of ways, and move back into my mediocrity.

It’s not about being outstanding, mind you; it’s about being authentic. And, simply, being in the middle of a pack for me is not authentic. Having a plodding life is not adequate for me. I am and have more than that.

But, I have never needed to push through the fear that keeps me hidden. I have never been forced before to make the choice to go past the threshold, and continue on.

With cancer, I don’t have a choice. I simply have to push through, past the fear, past anything – because there is nothing but the choice for life. I simply have no other option except to persevere, except to push myself into excellence, out of the dark.

I have never had to fight for anything the way that I am having to fight for my life now. Nothing has ever been more precious. To be out of options for how to proceed is a gift at this point. There are choices that I’m going to have to make, and I’ve been presented with the concept of the “burden of choice.”, But with my life, there is no choice. There is no option to recede, to play down, to retreat, to ignore. I am being given the opportunity to persevere in a way I never had.

And, as I’ve said, this knowledge has become my talisman and my lighthouse. I will do everything in my power to be as healthy as I can for as long as I can, simply because I must. Simply because it’s the only thing that is.

I’m, in fact, glad for this opportunity, having never had it before, having before had the option to tap out, and say this is too hard or too scary. This, THIS, cancer, IS hard and scary. It is by far the most hard and scary thing I’ve ever had to do, yet in this situation, there is only one way forward, and that presents freedom. 

Tuesday, November 6, 2012

For vs. To.


A friend came by this morning and shared a story with me.

Back in New York, she was acquainted with a guy she didn’t like very much. He would brag about his work, and generally sound superficial and as if everything was amazing in his life.

One day, he came and shared that he’d just gotten laid off. And what he shared from this she said was, to her, the first time he’d ever simply been genuine:

“I have to ask myself, Why is G-d doing this for me, instead of Why is G-d doing this to me.”

I walked around the enclosed veranda here at the hospital with this, and a note from a friend in Chicago, in my mind. Her note read: What questions does my heart need answered?

As I meandered, still feeling pretty amazing, since I’m only in the beginning of this treatment, I held these questions.

Perhaps it might sound Pollyanna to want to try to turn cancer from something happening TO me, into something happening FOR me, but as soon as my friend said this, I felt something shift in me. A perspective shift palpable.

I don’t know the why is this happening to me, but what can I take out of why this might be happening for me?

Already, I’ve noticed that my most basic desire, front and center as it is usually receded in all of us, is I Want To Live. With this desire as my touchstone and the epicenter of my purpose, other things have taken a different tenor. Mostly, I see that I’m not dismissing my talent any more, whether that’s for writing or for art.

I Want To Live translates for me as I Am Awesome. That I have so much to do, and so much to give. I have never been able to feel an “I Am Awesome” before. It was always tinged with doubt and perfectionism. But as I begin to ground myself in my will to live, I see the development of a place inside me that can hold the space for I Am Awesome.

It has never mattered how many accolades or compliments someone may give me, no matter what it’s about – if I don’t actually have a place to match that sentiment within myself, then it falls on deaf ears – I can’t hear it. Without a place inside me that will recognize the truth of who and how I am, any external validation can never settle, make sense, be truly appreciated or absorbed.

In addition, starting to see myself perhaps a little more clearly, I am beginning to notice the places where all this external love makes sense to me.

It was so overwhelming and seemingly unusual to have this outpouring of love and support when I found out I was sick. I simply didn’t know how or where to put it all. But, on Sunday, two friends came over to help me clean my apartment while I packed. They didn’t quite know what I needed, but they came to help, and I sheepishly said, well, my kitchen and bathroom really need to be cleaned…

And. They were on it. One of my friends said it was like being in camp when we had chore day, and each girl was doing something. These girls got on their hands and knees to clean my apartment with and for me. I was astonished. Why are they doing this? Is this too much? Are they going to get resentful that they came to hang out with me, and I handed them a bottle of Lysol?

No. They did it because they love me, and because they want to help. But, again, back to the “where does this fit in my cosmology of self?” I considered one of these two friends, who recently moved to a gorgeous house in Berkeley. A few months ago, while I was unemployed, she needed help with her yard. I spent an entire day with her ripping up ivy, baling mulch. I did it because it made me feel good. Because it gave me something to do. Because I care for my friend and wanted to help her in a way that I was eager and happy to get dirty and sweaty to do.

I wasn’t resentful. It wasn’t too much. I remembered this after my friends left on Sunday. I realized that they are like me, they did it because of reasons like mine. Because they have generous souls and love me and want to help. Because it makes them feel good.

I began to settle into acceptance of their care. I began to recognize that I had a place where that fit within my cosmology. They, are like me. I have this place in me, and when they show up, it’s because they have this place in them.

It began to make room for the kindness of others as I began to recognize I have that impulse in myself.

What questions does my heart need answered? Perhaps that there are places inside me that have been closed and closed off to the truth. Perhaps my heart needs to learn that opening to my own truth allows for the influx of love and care by others. 

Ultimately, that opening to my own truth and my own acceptance of self allows for intimacy with others.

Why is G-d doing this for me? Where is alchemy in this? Can I allow my will to live to be my lighthouse to a new phase of myself?

Monday, November 5, 2012

Focus, Hippie Style.


Hi Lovelies. I’m going to make this quick, as it’s my last few moments of freedom before we start with procedures and chemo today.

But, that said, I’m doing ok. I slept really well (here at Hotel Kaiser), and am feeling optimistic, though scared – which I think is likely the most normal thing in the world.

What I’ll ask of you, if you please, is if you could concentrate on my maintaining the health of as many systems as possible as I undergo this treatment. My throat became really bad last time from the chemo, making it impossible to eat anything but Boost and Ensure shakes, and I'm too young for that, so maybe you want to focus on the health of my esophagus.

Maybe you want to focus on the chemo attacking the hidden cancer cells.

Maybe you want to focus on my heart, beating soothing, healing patterns into my body. Maybe you want to focus on my mind, sending out into myself thoughts of health, love, and recovery. Maybe you’ll focus on my reproductive organs (don’t be gross), as these procedures may make me infertile.

Maybe you just want to focus on all of me, surrounded by white, healing light. Allowing the drugs to do what they’re supposed to, and leaving the rest of me intact. Maybe you want to focus on my future, on when I’m healthy, taking that flight lesson, painting that canvas, performing that poem, throwing that frisbee on a beach. Waiting for a bus, even. 

And most of all, maybe you just want to focus your beam of love straight into me, where it will do whatever is most needed of it. 

And my thanks is to let it.