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. 

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 _____.

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?

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. 

…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 façade 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.

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. 

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 2^nd
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. 

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. 

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? 

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.