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. 

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. 

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. 

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?

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. 

I haven’t unraveled in several years. I haven’t gotten all
the way down to bare wooden spool in quite some time. Apparently, sometimes you
need to go all the way to splinters.

Tuesday and Wednesday were days of this. Not knowing whether
I would stop crying. Not knowing if it were okay to just cry – or if I should
somehow feel something else – something more like acceptance, or serenity or
simply not so unmoored.

I didn’t want to let myself get that far – it’s been so long
that it felt dangerous, or juvenile to go all to pieces. If I hold on to
something, some semblance of being all right – some appearance of being
alright, then I’m alright, right?

So, on Wednesday, I watched The Karate Kid on
loan from the library. And as soon as it and the special feature commentaries
were over, I started to bawl. Again. Two hours relieved, distracted, and then
it all crashes in again.

It was then I called around for help – just to cry, to have
someone witness and hold the space as I did, so it didn’t feel so alone to do
it by myself in my apartment. If someone else is there, then I’m not unraveling
fully, am I? I’m not to total pieces, am I? I’m not a leper. Or a lunatic.

At the end of the night, I spoke with my
friend in Chicago. She moved back to Chicago after desperate attempts to make
it work in San Francisco, after she had to leave her job, needed to leave
her apartment, was trying in every backwards, upsidedown, whatdoyouwantfromme
way to make it work and stay in San Francisco.

In the end, she moved back home, to the suburbs of Chicago,
where she is living with her parents. Her greatest fear of what would happen if
she didn’t “keep it together” came to exact and swift fruition.

Her life unraveled exactly as she thought it would if she
let go of the desperate trying. … And yet, she’s okay. She’s in exactly the
place she feared she’d be, she didn’t want to be, she thought it was a failure
to be – but she’s not a failure. She’s still her. She let it all go to pieces,
she allowed herself to unravel, and she’s fine. She’s still amazing, and it’s
not as bad as she feared when she was trying so hard to make pieces fit that
weren’t fitting.

Her moral to me, was sometimes unraveling is simply what we
have to do. To let myself cry for 48 hours is simply what I needed to do. I
felt better afterward, yesterday.

I needed to, and I kept trying to keep myself together from
falling apart, as if that would eliminate the need for me to do so. And it
didn’t. Trying to force my feelings into a box they do not fit doesn’t work,
apparently. So, I let it all go, because I simply couldn’t hang on to it
anymore.

I used an entire box of tissues, and made the mental note to
get the ones with lotion next time. I ached, and dribbled, and sobbed at the
ceiling for answers.

I fell apart. I really didn’t want to or intend to. If I
don’t fall apart, then it feels like I’ve still got some control in the
situation – I can still handle this, I am still the master of my destiny.

However, the truth simply is otherwise in this situation. I
am not the master of my destiny here.
This is utterly out of my
control. I have no say in this whatsoever, and yet I have to continue with it
anyway. Who wouldn’t wail against the Universe for such a raw deal?

I didn’t want to see my powerlessness in it, really is the
bottom line. If I can maintain, even to myself some semblance of “I got it,”
then somehow, I can convince myself I really do. To fall to pieces is to admit
that I really don’t “got it,” and I really never had it – as far as this goes…
and as far as a lot of other things go to.

To really allow myself to unravel is to really admit that I
am not in charge of everything. That I am not G-d, and that I am simply,
unalterably human.

Who wants to admit that?

The irony, of course, is that when I finally allowed myself
permission to fall apart – or rather, when finally I had no further resources
to hold it all together, I did exactly that – I fell apart. I sobbed on the
phone to friends, to my mom, simply to the quietude of my own home. I cried.
And it felt like it would never stop – the grief for how different and
uncontrollable everything is for me right now.

But it did. I cried myself into that state of dehydration
and near-cross-eyedness. I poured myself into bed, and I woke up better.

My Chicago friend said something else. She suggested that I ask to speak with G-d’s manager. That this particular representative was not
being very helpful, and I simply needed more help. If my Higher Power wants me
to get through this, I’m going to need more resources. So, I’d like to speak to
your manager, G-d, you’re simply not giving me what I need, and I’m going up
the chain of command.

She suggested, even, perhaps I could talk to G-d’s mom. Tell
his mom what rotten things G-d had been up to lately, frying ants’ backs with a
magnifying glass, and giving a young artist cancer. Grounded.

These lines of thinking give me some power back. I don’t
have any external power here. I cannot control the doctors, the needles, the
hair loss, the fatigue; but I can control how I deal with it. How I choose to
address what’s happening to me.

I needed to fall apart first. I needed to let myself free
from my own ideas of what it looks like to go through something like this
properly. I’ve never done this before,
is what I kept on saying to my mom on the phone. I have never done this before
– of course I have no idea how to
do it then.

Of course, I have no idea what’s the “right way” or “wrong
way,” because, there isn’t one. There’s just what I need to do. I needed to
cry. For two days. And I’ll likely need to do that again.

Today, I don’t feel that need. I’ve asked for more help from
the Universe, and I believe it comes to me when I’ll need it. The help that I
needed the other day was permission to let go, to let go completely. To tell
myself, I don’t know how to deal with this, to hold this, and to simply grieve
for that.

And, so, now I’ve unraveled. I went all the way to bone and
back. And I’m alright. I let myself fall to the depth of my sorrow, and I came
back. Therefore, I now have the experience of that being a viable option – it doesn’t
mean I’ll drown in it forever. Unraveling is allowed. Unraveling is not the
end. 

NOTE: I warn you in advance, this will not be the
happy-go-lucky of yesterday. However, I also promise to go meet up with some
people today who will hopefully help shift my perspective.

I am scared. I don’t want to do this anymore. I don’t want
my chiropractor to tell me that the pain I’ve had in my side for a week isn’t
muscular, it’s an inflamed kidney. I don’t want to question if it’s the daily
injection of blood thinner I’ve been giving myself that’s causing it.

I don’t want to talk with the coordinator at Kaiser about
“relocating” to Stanford for a bone marrow transplant. I don’t want to have to
tell him that I haven’t had my bone marrow biopsy yet. I don’t want to speak words like, I will likely
stay with chemotherapy for 4 rounds instead of going the transplant route. I don’t want my doctor to say words like “complications from each round.”

I don’t want to have to feel scared falling asleep last
night. I don’t want to have to tell the dark that I don’t want to die. I don’t
want to think about this specter of cancer following me for the rest of my
life.

I don’t want to be so reminded of how mortal I am, or how my
body functions and currently malfunctions.

I don’t want to have to notice everything so acutely, or appreciatively. I don’t want to wake up and the first thing I say to be, I’m
glad to be alive. I don’t want this to
be the reason I say it.

I want to have the problems I already had – romance,
finance, family, career. I want normal problems. I want normal activities, and
normal griping. I want what I had. And I can’t ever again in the same way.

I don’t want to do this anymore. 

I don’t want to go in
tomorrow and have them gauge some muck out of my skeleton to observe under a microscope. I don’t want to
plead for them to stop because it hurts, like I had to last time.

I don’t want to feel so powerless to do anything except
accept what’s happening. I don’t want to remember the phrase: The distance
between what we want and what’s happening is proportional to our pain. I don’t
want to remember that I’m upset because I’m not in acceptance of what is
happening.

I don’t want to accept it. And yet, I have absolutely no
choice.

I don’t want the doctors to tell me that I have maybe a 60%
chance of having kids now – even though I wasn’t sure that I wanted them. I
don’t want choices taken away from me that I haven’t been able to approve of.

I don’t want to be so fallible, and so human. I don’t want
to be so weak in a human body that can betray me.

I don’t want to lose my vision. My eyes continue to do
things that the doctors can’t really explain, but aren’t as concerned about
anymore. I don’t want to hear solutions like a shunt in my brain to relieve
pressure on my eye, or surgery to the muscles of my eye in order to fix these
problems.

I don’t want to THINK ABOUT THIS ANYMORE.

I want to go to work. I want to go to the coffee shop. I
want to go to art shows. I want to procrastinate, and leave dirty dishes in my
sink too long and leftover food ‘til it grows mold in my fridge.

I want to talk about boys on the phone with my girlfriends,
and squeal when one gets engaged. I want to go home for Thanksgiving like a
normal person.

I want my hair back.

I don’t want to know that it’ll take three years for it to
grow back. I don’t want people to tell me what a nice shaped head you have.

I don’t want to know that each time I go through chemo, I’m
going to get weaker each time I get home – so this, right now, right the fuck
now, is the best that I’ll feel for the next 5 months.

I don’t want to know this.

I broke my foot when I was in 6^th grade, riding
my bike home from Sunday school. I was on crutches for 6 months. I remember
being embarrassed – I mean, I was 11, and being different at 11 is awful. I
remember having to hobble down the 6^th grade graduation line next to
the shortest boy in class, because I was on crutches so I couldn’t stand by height like everyone else.

But, really, I don’t remember the length of six months on
crutches. I remember a few stand-out incidents of that time, but I don’t
remember it like it was “forever.”

I don’t want to know that I know that this won’t be forever. That “this too shall
pass.” I don’t want to know that I know this.

But I do.

And it sucks, because it spits in the face of all my
complaints and my self-pity. I’m allowed, I know, to have some of this
self-pity. I know that I’m allowed any emotion I want to have. But, I know it
won’t last either.

I’ll feel different. I’ll feel better. And then I’ll feel
awful and cry again.

I do want to be
thinking about bus stop boy again. I want to be thinking about earning money to
save to move back East. I want to be thinking about art for a café show.

But, instead, I think about mortality. I think about how
tenuous this is, and how if I don’t do exactly what’s in front of me, I’m going
to die.

Instead, I talk with doctors about stuff I don’t want to
know about at all, let alone have it be about me and not fictional and on House.

I want to read Harry Potter without the stain of tick-tock in the background.

I will feel better. But I needed to say all this, because
it’s true. Because today is a day when I’m crying about my circumstances.
Because today is a day I can’t see past the end of my own shit.

I need to say all this because it takes the isolation out of
it, and helps me move through it. So, thanks.