My mom told me she bought the book The Year of
Magical Thinking, Joan Didion’s memoir of
the year that her husband died and her adult daughter lay in a coma, about to die.

I’m not sure how to take that information. But my mom said she wanted to see how someone could turn that kind of grief into wisdom,
or something that didn’t drown her, or at least something that could be spun into art, like a strand from Rumpelstiltskin. 

When I was 19, I had a breakup that shattered me. I had made
a very drunken, public display of humiliation of both myself and my boyfriend
that alienated a large group of friends and caused me and everyone else, including my suddenly-ex-boyfriend, to sort of revile me.

I spent a week without eating solid food, drinking only Dr.
Pepper and smoking only Marlboro Reds (his brand) on the front stoop of the house my
parents still shared. I was shell-shocked. I was numb, demoralized, heart-broken. I began to compose suicide notes on the computer (why not
hand-written, I don’t know).

Then, my brother, Ben, said something very important to me: “I don’t want to be the kid in school whose sister killed herself.”

It was what I needed to hear. I got it. I got the isolation
and selfishness of suicide. The clawing temptations to end something that
begins something in the lives of everyone else you know. I couldn’t do that to
him. I got it; and it saved my life. 

In the fourth year, the senior year of college, when all my
classmates and roommates where heading toward graduation, and I was heading to
the bar and failing out, I was also heading toward the prospect of returning to
the home my dad now occupied as a divorced man. He and I had a tumultuous
relationship at the time (not unheard of for us), and in retrospect, I think part of my self-destruction and manic partying/numbing was to keep me
from thinking about moving back to that house with a man I was afraid of. Part
of it, perhaps, was to even make things so chaotic that I couldn’t be allowed
back to the house – that wherever I ended up would be safer than with him.

That place ended up being a psych ward for two months. Which,
… was not pleasant, but kept me from him. And, in the end helped me to
straighten out enough to pull some wits together to be able to move back in
with him and my brother at the end of that summer my friends were celebrating
their new adult freedom.

As I consider the closing of this cancer process, I have
been nudged by this memory more than once. I have a fear of repeating the
process of that destruction – knowing, as I do, that I will be returning to a
job that makes me feel small, and, I fear, to the general pall of lostness and crippled joy.

This fear, these feelings of fear that I will repeat some
self-destruction in order to avoid that which I label as diminishing, crushing,
hopeless (as with returning home 10 years ago), has dissipated a little in the
few days since it’s appeared, but I acknowledge it, and tousle it around. Is this why I don’t
want to do round 5 of chemo? Or why I stopped my antibiotics last week, under
the reasoning that they were affecting my liver and causing me to sleep 14
hours a day?

The other day, I used a tool a therapist taught me in order to
gauge my decision to do the fifth round or not. I asked my deepest self, on a
scale of one to ten, how much did I internally support going for the 5^th
round? The answer was 5; 5 of ten. Not high. But, then I asked the converse.
How much did I internally support the decision of not doing the 5^th round? Answer, 2. Even
less.

So, no. I don’t want to do this round — Who would? – but I
believe in that path more than I believe in not doing it.

I’m going to the doctor today to look at my eye again, and
I’m going to have to fess up to having stopped the antibiotics (though, by the
way, I’ve had more energy since I stopped them…even though the eye really hasn’t improved). I’m scared that because of
the chastisement my oncologist gave me when I left the hospital during the
eye-infection debacle — about playing it straight, and following doctors’ orders — she’s going to revoke my 5^th round privilege, as apparently
there were other doctors on the Chemo Approval Board who thought that if I was
being such a petulant patient, then maybe I shouldn’t have it … but, she told
me pointedly, she’d stood up for me, so, basically, play nice, and don’t let her down or
make her eat her words.

Great. Now I have your reputation to worry about? Or to
worry about not getting treatment that I need because I fucked with treatment I
didn’t know I needed?

There’s a lot of chatter here. A lot of brain chaos, and a lot of crying lately. But, in
the end, it’s all a choice. Either I am choosing to make decisions that support
living, or I’m not. I can make those decisions no matter what job I hold. And I can hold the talisman of my
brother’s brave words to me as a reason to keep putting one foot in front of
the other, to endure one more antibiotic or round of chemo, to make one more phone
call, to wash one more dish, to write one more gratitude list, to craft one
more blog – because I still don’t want to be that girl.

And, god willing, I’ll never have to be. 

Somewhere along my way, I was having a conversation with a
snowboard instructor. He said that most people attempt to learn themselves, as
they go, and thus when they come to him, he has to retrain them in the correct
ways to do the sport, and unlearn the bad habits they picked up from their own
trial and error.

When I had my depth hypnotherapy session on Thursday, we/I
came to an interesting statement: It’s not my fault that I don’t know how to be
an adult. And that I would both have to forgive myself, and allow myself the
patience to learn.

Most of us are sort of thrust into the world with little
idea of how to navigate it, and based on the resources we have available, we
make choices, which then make habits. Like the snowboarders, some of these habits
have to be broken, because they are eventually causing more harm to us than
good.

Taking responsibility for myself and my life has never formed itself as a habit. It has been “easier” to make decisions by default, allowing the
clock to run out, so a decision is made for me. Or to eek by on the path of
least resistance and least gain, and measure out a mediocre and dissatisfying
life. It’s been that way since grade school, making moderate efforts that achieved pretty
good results, simply on the fact that I had wits about me.

But, the “real world” (whatever made that phrase popular, I’ll
never know; is there a fake one? are some more real than others?) doesn’t reward of half-assedness. All that I’ve ever read about
success or achievement has been predicated on firm and consistent effort, on perseverance,
and on taking responsibility, since, really, no one will do it for us. (I’ve
written some about this limbo non-adulthood in my most frequently read blog post — likely due to its titillating title — “Magical Accidental
Orgasm,” and that was some time ago, yet still stands true.)

What my friend said the other day about creating a life worth
living implies, no, necessitates taking responsibility. And for a long time, I’ve beat myself up
for not being a persistent, consistent person. Lashing myself for being a
half-asser, for starting things I don’t finish. … Instead of allowing myself to
learn how to be another way.

These are just patterns that have become habits. They are
not irreversible. But I first have to forgive myself for not knowing what I don’t
know. It isn’t my fault that I don’t
know how to save money and invest in a 401(k). I am not an inherently broken
person because I don’t have longevity on my resume. It is not a hangable
offense to not know how to have an intimate relationship based on mutuality,
trust, and empathy.

The offense is in not making effort to change this. And, so,
slowly, I do, and am. I excavate this shame, show it to the light, let the
facets of belittlement and lies burn off in the sun, and lay it to rest, as I
call you up and ask you, Hey, how do you file taxes properly? How do you know
how much to put in a savings account? What are your systems of checks-and-balances
that keep you moving forward and taking action on your own behalf every day, and not sinking into lethargy and Facebook?

If I want to live, and I do, then I’d like to learn how to live differently. It won’t be the easy,
sliding by way, but that easy sliding by way has become more painful than helpful now, and ultimately, it isn’t how I want to be, or who I feel myself to be.

As the phrase goes, “This isn’t an overnight matter,” but
the small action of holding myself and my history with compassion rather than derision is likely
to help the process. 

I had lunch with a friend today who suggested that maybe
this isn’t the chemo round where I holster my gun and step out into the High
Noon sun. That maybe this isn’t the round where I shoot rainbows from my tush,
or alight gently on the calm waves of serene acceptance. Perhaps this is the
round I slog through. Perhaps this is the round where I am precisely where I’m
at emotionally and spiritually, and that this is exactly, perfectly okay.

A few people made some surreptitious phone calls to me
yesterday — “just to say hi” — after reading my blog. For which I am grateful.
And grateful that I have this as a mode of communication. But, yesterday afternoon,
I also placed a bunch of phone calls to trusted friends and left a bunch of voicemails
that said, “I’m having a hard time; can you call me back?”

Then, I made a call to coordinate Sunday plans with a friend, and even though it wasn’t one of my “outreach” calls, she and I
ended up on the phone for about an hour, most of which was spent talking about
some stuff she was going through. And,
don’t you know, I felt better afterward.

I still did call my friend who’s in both cancer and recovery
worlds, and she had some really good advice for the “Dark Night of the Soul”
periods of cancer drama. I asked her how you charge up for these things, how
and why you keep going when you’re so tired and defeated and demoralized. She
said, You have to create a life worth living for. 

If all of life was how it’s started to look recently –
chemo, mortality statistics, hospital beds, ER rooms, lab draws, platelets, eye
infections, rude doctors, side effects, isolation,
fatigue, acute solemnity – then SURELY, what would there be to fight for? Why am I fighting so hard for
a life that looks beige, taxing, and unending?

So, create a life worth living for. One which brings life
and color and laughter and perspective and deep lungfulls of air back into the
picture. If even for a minute.

I told her I’d been to an improv class last Sunday, and I’m
signed up again this Sunday. In fact, another member of the group emailed me after class to suggest
I go into their advanced class, so I asked the facilitator, and he said sure, I
could come to the advanced class, check it out, and potentially audition, as
they’re a performing group, … and have, like, real shows.

I’m trying, guys. I am. I convinced my friends to go see the
zombie rom-com last weekend, and it was awesome. I contacted my band friend,
and she’s out of town now, but yes, we’ll connect. Today, I took out the
keyboard the temple leant me, and, after the normal piano setting, had a blast messing with the percussion and pipe organ and steel guitar ones. I make a mean
beat. And I laughed.

Tonight I’m going with a friend to a zen talk of some sort,
something to get me out of my house and into the world, even if it’s not quite my bailiwick. Tomorrow, I’m going
into the city to check out a car I might actually buy (it’s cheap, and my financial friends have helped me
square if this is feasible, and it is!). And in the evening, head to the art
opening of a school friend of mine with another school friend of mine.

Sunday is improv, and then an afternoon with my friend who’s a CPA who’ll help me do my taxes, since I sort of had a melt-down on
the website the other day, and called her in for help.

A life worth living, piece by aching piece, putting it back
together. And, I know, this is just for now, what I’m able to do now with my
energy as it is. It’ll be less after the chemo, and it’ll be more once that’s
done. The cancer will come back, or it won’t. I’ll be able to deal with all
this, or I won’t.

But I don’t have to prise myself to be anything or feel anything other than I am. I don’t have to show up to the nurses with my grin
they’ve become accustomed to, and my good patient t-shirt. I can be cranky and
crabby if I need to be. I can be resigned and deflated if that’s what’s going
on. The good soldier routine worked – and was true – for a time, but it’s not
what’s true right now. 

Right now, every ounce of un-depression is fought for,
and every single phone call is a life raft. 

I saw my chiro yesterday, who’s really more like a
know-it-all of everything, so I trust him with his opinion and my care. So when
I asked him if he thought I should have my final round of chemo, he poked a few
areas of my body, and said that it’s showing that I’m making cells alright, but
that I’m not killing off the old ones effectively, so that, Yes, he thinks I
should have the final round.

I just emailed him to ask how a final round of chemo actually helps
in that regard, because won’t that simply tax my system further, and create an
even weaker “killing” system?

I don’t know. I just know that this is so hard. That I’m so
tired, and I feel so beat up, and beyond what I feel capable of withstanding to
spend a week in a hospital and a month watching blood counts do things, and
hope, just hope beyond fucking hope that this all does anything at all.

You know, I still have a 40% chance of living according to
their statistics. It’ll be 40% until the 5 year mark when my chances get higher.
So, it’s not like I feel out of the woods, or safe. And when I’m not feeling
safe, why do I want to put myself in a situation (hospital) that makes me feel
even more out of touch with myself and my life, my serenity, my safety.

I don’t know yet. I’m not making any decisions today. I have
to hear back from my oncologist about an admission date, because the eye doctor
I saw yesterday is still concerned that I’m not ready for chemo while the eye infection is still not “resolved.”

Can’t I just figure it out from the inside? Find the
solution, and heal myself? Can’t I just read Caroline Myss, and Anne Lamott, and
this book on healing trauma, and see my depth hypnosis lady, and, as I did this
week, contact a therapist who deals in somatic therapy specifically around
sexual trauma? Can’t I just be a seeker, not a patient? Stop being the good
soldier?

I am not a good
soldier anymore. I’m the, “Don’t worry about me guys, just leave me here,” soldier right now. I’ve fought. Hard. For years. I’ve done every goddamned thing that I know how
to do, and yet, I’m still scared, and crying, and human, and worried, and
tired.

Can’t I just go to improv class? And call back my friend to sing with her band? And use the keyboard that the temple leant me? And say
yes when people invite me out? And use this next month to not be in chemo
land, but to be in recovering land, so that I can return to work a bit more
than a walking corpse? (a melodramatic, but effective, visual)

Can’t I stop now?

Stop these ways of “healing,” these toxic, nuclear, vicious
ways that are used because one study said so?

I sat in meditation this morning, all good soldier
brain-chatter, and then finally tried to get quiet and listen to what my
“insides” had to say about going for the fifth round, and I just started to cry.

I don’t know what to do. (I just got a call from the doctor,
and we’re delaying the chemo at least til I see her on Tuesday to look at the
eye – so there’s a stay of execution.)

I don’t like thinking, Oh, I need to ask someone to do my
laundry so I have enough underwear for the hospital, or think that I have to
update the lifeline calendar so I have people to bring me meals so I feel less
like I’m eating prison-food in isolation.

I know how to do these rounds; even with the hiccup of the
eye infection, I know how to do them. If nothing goes wonky. But it takes so
much, guys. It really does. I don’t know how to re-up, or willingly accept
this. I don’t know how to agree to this, and I know the impact “energetically”
that has on the process. If I’m on board, and think of the chemo as helping me
rather than hurting me, if I think of it as medicine that will help me get
well, I know that has a better impact than thinking this is poisoning me. I
believe the effect is different. But I can’t switch that thought right now.
Right now, I’m in digging in my heels mode.

Thankfully, I don’t have to do anything today, except get
dressed, eat something, and go with my friend to an art gallery of her friend’s
work, then to my depth hypnotherapy, and then have a phone interview with the
new potential specialized therapist.

That’s a lot for one day. But it beats peeing into measuring
container with an IV line plugged into your chest. 

Well, I can’t help but debate whether the fifth and final
round of chemo, slated to begin next week, is the right thing for me to do, or
whether I should forego it and “take my chances.” But just because I debate it,
doesn’t mean I won’t do it. The longer this process goes on, however, the more
complications become known, like the risk of “secondary cancer” (from the chemo treatment
itself), and continued strain on my liver, which my chiro/naturopath says is
pretty aggravated these days.

And even though at this point, I feel it’s “not about the
cancer,” about my actually having and curing of the cancer, I don’t know that I
could live with the “What if’s” if I don’t have the final round. I mean, I
don’t have to. It’s just protocol, since
the only study they’ve ever done on chemo for Leukemia patients (which, dude, really??) was on 5 total
rounds, so they do 5. They never did a study on what happens to folks with 4
rounds, 3, or even six. So, 5 it is. Just “because,” because it’s what they
know, what they can see and test, and because a paper says so. God love Western
Medicine.

As the (pleasepleasepleaseplease) end comes nearer of this
process / ordeal / drama / illness / emergency / tragedy, I question what I now know,
what is now different for and in me, that wouldn’t have been different if I
hadn’t had cancer. I continue to ask “why,” even though I’ve heard that’s “not a spiritual
question,” and I continue to pose my own answers. I have some plausible
“reasons” or outcomes of my having had to go through this, a period of time that gave me access to ideas and actions
that I wouldn’t have necessarily gained without it. Who knows if any of them are
“accurate,” but it’s good for me to see that, even though I haven’t figured out
the meaning or purpose of my life, I can see that I have gotten some gains out of this
process/ordeal/etc.

Was my getting cancer about…:

Is it about relinquishing my perceived control of my life
and my ideas of how my life should go and be going?

Is it about a devastation and rebuild of my ideas about faith and my
connection with whatever “It” there is?

Is my getting cancer about learning to believe fiercely in
myself (act in progress) no matter my income or job title?

Or is it simply about starting to sing little snippets of songs
again as I putter around my house?

“Why” may not be a spiritual question, and there may not even be a “Why” at all, but, to me, those are some good
answers. 

(Singing While Drowning)

It’s past midnight

and you’re lying on your side on

white starchy sheets

in a room off a beeping ER hallway.

An IV line is plugged into

your right arm, and saline

salt water has been dripping

into you for several hours now.

You banter with the blonde nurse

with the long pony-tail, who agrees

she doesn’t know why you’re still

here either, since the prismatic

lights have stopped obscuring your vision.

Some clock-less time later, the cute

doctor with the gold wedding band

rolls his pleather stool toward

your stainless steel cradle.

He tells you something

that slides off your brain like oil, so you

ask for something to write on, which

ends up being a torn cover from the

scratchy off-brand tissues.

You write down the numbers you’ve

asked him to repeat, as though pinning

the words like a moth will

prevent them from shifting into your lungs

to drown you.

2 16 13

I had a pretty synchronistic thing happen this
morning. I was writing my morning pages, and I was trying to remember what
Brene Brown had said in her The Gifts of Imperfection book about “digging deep,” that instead of hitting
the “dig deep” button and scraping the reserves of our well when we are depleted and simply can’t go any further, her
research showed her that people who live in a “wholehearted way,” as she puts
it, do something different. They DIG by getting “Deliberate, Inspired, and
Going.”

She gives an example, that she was burnt out on work for the
day, and usually would have gone to Facebook or the internet to “recharge,” but
that’s not really restorative, is it? So, she deliberated, she thought on it,
and she writes, she prayed on it, and she realized she’d had this movie from
Netflix sitting on her desk for a week, and instead of zoning out, she watched that and it was
just what she needed.

She writes it better in the book, but I didn’t feel like typing out her
copy right now.

The point is, is that as I think about ways to rest and
restore lately, or as I look at how I have been resting and restoring, it looks
like marathon episodes of Buffy, my
friend having leant me the final two seasons of the tv show. — Which yes can be fun, and restorative in moderation, but not 6 or 8 episodes in a row. So, yesterday,
after I came home from my depth hypnotherapist, I was feeling pretty raw and
discombobulated, and so I went for a walk. I knew if I stayed home, I’d just
watch Buffy into the night.

I walked a different way than I usually go, and wound up wandering past the
new location of the local library. As irony(?) would have it, I lost my wallet
on Wednesday at a café where I was meeting with two women to talk about my
finances, to make plans for the money I have and the back-rent I owe. So, now
wallet-less and library card-less, I went to the library.

I putzed around for some books, picking up one I knew I wanted
to read, and the rest that just spoke to me as appropriate, either in their
massive levity, or in their massive gravitas, i.e. healing, spiritual books,
etc. A funny thing happened there too. I had brought a book to the counter to
take out that was about healing particular trauma, but written about in a way I
hadn’t seen before, and as I stood there slightly embarrassed by the title of
the book (but, hey, I could be a research student(!)), the librarian said that
actually that title wasn’t in the system anymore, and I could simply have the book.

The library has had to downsize, hence the relocation into a
trailer on a public school property, and so this book was meant to be taken
from the shelves anyway – which is a shame, because I think it’d be a useful
thing to have in their repertoire. However, it serves me, because I now get to
keep this book that I know will take me a while to get through because of the
content and emotionalism.

I think the only reason I was even willing to pick up that
book was because I’d had my session with this new therapist. We didn’t do
anything “woo-woo” this first session, except at the end, after having given her my
“emotional biography,” I asked her how I was supposed to now go out into the
world with all this stuff stirred up and live my day. She suggested we do a
little meditation to ground, and center, and gather up my “guides,” and to know
that I can hold all that came up. So we did a few minutes of deep breathing
basically to help me be able to walk out into the world.

There’s a phrase I’ve heard which goes: It’s okay to look at
the past, just don’t stare at it.

Part of me has been questioning whether going over these
issues is just redigging at the past again and again, but the truth I feel and
have felt is that something is broken there and needs to be, and can be fixed. There’s a part of me too that acknowledges a
“Lady doth protest too much” around this stuff. That “when I’m fixed,” then I
can engage in the world, with men, with relationships. Till then, I’m broken
and off limits. This is not the “right” way either. I am both working on
things, and capable of trying to
engage with the world. Even though it seems scary. Even though I’ve been using
this grief and trauma as a shield for years.

But as a friend told me, we’re all always doing work. I’m going to continue doing work
till I die. Because that’s what being alive is. There is no sounding bell for
me to start my life, to engage with other people, to engage in activities that
bring me joy. There just is, as Brene puts it, the “Get Going” part.

So, in my morning pages, having then spent the rest of
yesterday afternoon following the library excursion watching Buffy into the night, I was writing what does feel restorative to me, what does feel restful. And as I wrote my list, I wrote the
word “Companionship,” and my phone rang.

A friend called me to invite me to see her sister
perform tonight, early, for the old and infirm like me! I’ve heard her sister’s
music, and it’s amazing. So, I said yes. And there we go, Companionship.
Restoration. And a Friday night where I get to feel like a human engaged in the
world, and not a patient trying to get well, or a scarred woman trying to heal.

Although … Music. Friendship. Engagement. ? Sounds inadvertently healing
to me. 

So, my mom left early this morning, and when I woke up
myself, I totally cried. Dealing with cancer by yourself is hard. I know I’m
“not alone,” but having someone here, someone else who’s humming little things,
or singing songs we used to when I was growing up, … someone else to do the
dishes.

Mostly, what we did together was write a list of all the
things that are on my mind to accomplish, and we accomplished a lot of them. Listen to my 9 voicemails, call the many people I needed to call, write the many emails I needed to write, contact the cancer support person who called me a month ago, look at my finances around this new back-rent issue.
Order lightbulbs for the string lights I have hung up over my couch area, which
have one by one been blinking out, so that I have only 6 forlorn lights on a string of 25.

Things, tasks, things that just need to be done, but with
also all the convalescing, doctor’s appointments, the coordination of them, getting to them, contacting people to help me get to them, and resting, I don’t have the
wherewithal to do on my own. My own resources are tapped, as I’ve been
writing/saying recently. So, part of my sadness at my mom’s leaving is that I
feel left to my own devices again.

However. I read a piece of spiritual literature this
morning, and it basically said that once you’ve asked for help, expect it. Once
you’ve asked for guidance, expect it. I can go further for myself, and say
“accept” it, not just expect it.

I got a phone call this morning from an acquaintance asking if I needed anything from the store. And instead of saying, oh, don’t worry about it, I said Yes, and she just delivered some things to me. 

I got a phone call back from Cancer Care, and scheduled an
appointment to speak with a cancer counselor tomorrow. I haven’t yet had luck
getting to groups, so this is the next best thing, or even a better thing; a counselor, trained in
cancer world, to talk with. It’s on the phone, since they’re based in New York,
but I’m looking forward to it.

As I come to what is hopefully the end of my treatment, I am
getting … worried. Part of what almost
makes it easy in this period of active treatment is that there IS something
to do. I feel there’s too much to do, and it makes me crazy, but once this
active part of treatment is over, there’s nothing to do but wait. – Wait the
two months until the next blood test to see if the cancer’s come back. Wait,
then, six months to see if the cancer’s come back. All I’ll need to do then is wait, pray, and live my life. But,
I’ll always be waiting. Expecting. Expecting the worst.

I know this is normal, and I have a book on my Kindle (that
I haven’t read that much of, because I can’t really stand reading books that
aren’t in my hand) that is about survivorship, and the emotional journey that
comes once you’re through active treatment. I’d like to read more of it; I’ve
liked what she’s said so far, about worry, and catastrophizing, and thinking of
worry as “thought traps” that we can train ourselves to identify and avoid, or
walk out of more quickly at least.

I also asked my workplace if they can hook me up with some
volunteers, since I know they have an active volunteer population. What I have feared has sort of come to pass, and a lot of the
people who were active at the beginning of this ordeal have sort of fallen off.
I need more help, and I guess I’m needing some fresh water for the stream to
draw from.

I have an appointment on Thursday with a depth hypnosis
practitioner, and it’s in Berkeley, and it’s an hour and 15 minutes, and I
don’t know who to ask for help to get there. So, I’ve asked my boss to see if
anyone from the synagogue is willing to do something like that, and if not, I’ll
go back to the people I’ve been asking.

Help will come, because I’ve asked for it. It’s up to me to
expect it. I am GODDAMNED doing the best
I can. I really f’ing am. And, nonetheless, I’m overwhelmed and overdrawn. It
feels like asking for help becomes its own monster of a task to accomplish. I
don’t really know what to do, but I keep on doing something.

I know I can’t have my mom here to hold my hand all the
time, that I’ve got to find surrogate help; but it sure is just plain easier when you
have someone who knows and loves you, cranky or tired or silly, and can pet your head in her lap and sit in silence, or say,
Let’s do this now, or Let me do that, or simply snuggle together and watch back-to-back episodes of Buffy the Vampire Slayer.

Thanks, Mom. 

My mom arrives today from New York. She’s getting out right
before the big snow storm hits. There are just some times when you just need your
mom, and this is one of them.

I met with my oncologist yesterday, and we scheduled my last
chemo round. Sometimes I forget what it is I’m actually dealing with, in the
day to day struggle and schedule of it all, and then she says something like,
“we’ll watch for secondary Leukemia.” … Apparently, (only in 1% of patients!),
the chemo itself, having done its marvelous job of irradicating your immune
system, that trauma to the marrow can itself cause “secondary Leukemia.”

Like I said, sometimes I forget. Which, is important. I
can’t think about mortality all the time, but, like the Talmud says, we are not
obligated to finish the job, but nor are we free to neglect it. (Paraphrase!).
By which I mean, I can’t think about it all the time, but nor am I really free
to forget it, and pretend that my life isn’t now scarred with the specter of
untimely death. By which I mean, carpe diem. By which I mean, not precisely this
diem.

There’s something I realized by getting this awful eye
infection. I am alive, but I am not really healthy. I tried to convince my body
it was well by running around to IKEA and Target when my cell counts were at
their lowest. I tried to pretend that I wasn’t a patient, because it is so hard to simply be a patient all the time. But. In an effort toward acceptance, I am a
patient right now. My limitations are limited. My body is not what it was, or, god help me, what it will be.

So, not quite this
diem. Or not in the same ways as a “healthy” person.

That said, I’ve been thinking about the Louise Hayes
photocopy a friend gave me when I was first diagnosed in September. My friend
copied the parts that talk about blood disorders and Leukemia. Louise Hayes
apparently works with identifying the underlying spiritual cause of disease.
And, although some people interpret this to mean that I’m saying I “caused” my
cancer, that’s not what I’m saying. I simply believe that everything is
related, and a physical problem is a manifestation of a spiritual one; I just
simply do believe that – if there’s something wrong with the roots, there’ll be
something wrong with the branches.

Louise Hayes writes that with blood disorders and Leukemia,
the underlying issue is the active killing of joy and creativity. If you have
any familiarity with me and this blog, you know by now that I have a long
history of flash-in-the-pan enthusiasm followed by procrastination, and
stagnation. For a long time before I got cancer, I can’t remember the last time
I had a good belly laugh, or had joy, or anything like contentment. The truth
is, I’m actually quite funny, but you’d never know it over these last few
years, it feels like; I haven’t felt that part of me activated or enticed at
all. I’ve sort of been a Debby Downer for a long time.

Something I learned at the retreat last month was that Joy
is a source of sustenance, not an afterthought, or a reward, but a necessity in
and of itself.

So, maybe I don’t know what I want to do with my life, but I
do know a few things that bring me joy. I know my mom and I are stupid funny
together, and I anticipate that we’ll have some laughs. I know that when I am
done being a patient, there are things I want to do (like that flight lesson,
Erica!) that will bring me joy.

But, also, in this time of being a patient, how can I do the
opposite of “kill joy,” how can I cultivate joy? I made a painting for my
friend’s birthday the other day; it’s my first stab at mixed media, and it’s
awful, and perfectly where I’m at. I ran into a friend last night who was going
to pizza with his kids and some other families and invited me, and I went, even
though I felt awkward in the group of adults – but, of course, I got along with
the kids.

I want to actively cultivate joy, but within the boundaries
of really what I am capable of, and not what I wish I were or used to be
capable of. If I want to stay healthy enough to live through this, then I need
to be where I’m at, and “bloom where I am planted,” as the saying goes.

I’ll just share this, as it makes me smile. My mom and I
have a game we play in department stores that we’ve played for years; it’s
called the Ugly Jewelry Contest, and it is simply what it sounds like, we hold up something godawful, and squeal, “I’ve found it! The perfect piece for you!” And we
laugh at our wit and good taste. And the simple joy of being silly.