There is No Spoon. ~ Neo

If it is possible for me to have the capacity to do so, I think I figured out what happened these last two weeks, now that I’m finally pulling out of the swamp of it.

It’s not typical for me to go quite so dark, which isn’t to say it’s not appropriate, understandable, or even expected, but it was both surprising and a little frightening to me.

So, of course, being me, I look for WHY, instead of simply accepting that I could have a couple of (very) bad days during a 5 month course of chemo treatment for Leukemia.

But, I digress.

I’ll start with another story that leads me to validate my hypothesis.

In November, I got into a bad fight with my Dad on the phone, a period some of you readers may remember. Feeling accused, embattled, and belittled by my father, I spent an evening feeling as though the rug of my identity had been pulled back, and I stood again as the raw teenage fuck-up. Feeling defensive, and “bad,” and unsure of myself and my needs or boundaries. Unsure I was allowed to have any, and sure that if I did, I wasn’t allowed to express them.

I spent a few hours like that. A shamed animal. But it didn’t quite fit. Just as these couple of days/weeks of quick-sand depression haven’t felt quite right.

I met up with some of my peers that night, and went home, and as I lay in bed, still seething from the attack, I remembered something I said aloud then and wrote here: I am awesome.

The interaction with my father had stripped from me all the work and identity I’d been laying groundwork for in the last decade. A decade my father has no idea about. The person who I’ve become, the person I’ve struggled to gain every ounce of self-esteem to be. He doesn’t know what I forgot: I am worthy.

It is this very same aura of interaction that played out with the white coats during my recent eye-infection hospital stay. I felt belittled, unheard, and dismissed. I felt, again, stripped of the knowledge of myself, of the reality of myself, and again was back to the timid, mouse of a girl, feeling chastised and shamed.

Well. Fuck. That.

Although it took me a few weeks this time, instead of the evening it took in November, for me to remember who I am, I am finally coming to see straight again.

Part of this has been you. Several of you have reached out to me and told me what my words mean to you, telling me how you are making changes in your life based on what my writing inspires in you, telling me that you are inspired to examine your own life and choices as a result of me examining mine. You’ve told me I have value, and I’m once again starting to feel it.

It’s amazing that outside forces can have such a drastic influence on how we feel – or I feel – about ourselves. But, they do. And sometimes they’re fleeting, a moment of twinge as someone says something callous or inaccurate, but are easily brushed aside by a few repetitions of the phrase, “That’s more about them than it is about me.”

Sometimes, you’re so emotionally depleted already, and so shocked by a scary and sudden situation, that a room full of doctors telling you that your reaction to a drug might be invented, that your decision to take care of yourself is going to be a fatal one, that what you are doing is wrong, that it sweeps away the whole of what you’ve built inside yourself, and around yourself as markers of esteem and identity.

And sometimes that void where your self had been, and the blackness of the “you” you thought you’d overcome through years of friendship and therapy, becomes all you can see. A pit of despair and desolation. Stripped violently clean of all intimations of who you really are, and who you have become.

Perhaps it’s fitting that during this time, I lost my wallet, and with it my ID, my identity.

The unfortunate part about that hole is that you can’t really recognize that it is a hole you’ve fallen into, off of the path of “Who You Are.” It just looks like the hole that is, always has been, and always will be. There aren’t alternatives to the heaviness, the weightedness you feel.

And yet, even in it -- this time -- I could feel moments where it just wasn’t right. This pit of despair didn’t fit properly this time. It is a hole too small for the actuality of who I am and who I have become, and indeed who I will become.

Those chinks and pinholes in the depths grow with the mirroring you guys give me, eventually. Eventually.

And so the pit falls away. I don’t “climb out of it;” Like Neo, you realize, There is no spoon. This is just the Matrix, and this reality isn’t real, and it crumbles like so much sodden cardboard.

Reality forms as your eyes adjust, and you touch your arm and leg and face, and you see the history upon which you’ve built, and you see the community which has gravitated in a loving arc around you, and you see with evidence and conviction that you are valid, worthy -- and that dissociations from this truth are only temporary. 

On and From This Mortal Coil

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. 

Adulthood 101

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. 

The Patron Saint of Good Enough

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. 

Tinker Tailor Soldier Seeker

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. 

Reflective, *possibly* Hopeful

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…:

• asking for and receiving help?
• getting me to address old trauma with new therapy?
• individuating from my dad’s internalized expectations of success and approval?
• was it about getting a car (which I might be)?
• seeing my mom and my brother?
• taking a break from the rat-race?
• letting myself go on a real vacation?
• seeing my chiro more often?
• being leant a better keyboard?
• making different friends?
• learning how to advocate for myself and trust myself?
• taking responsibility for my life?
• learning/realizing how damn much I want to be alive, and how asleep/numb I’ve been in it?
• realizing how sad/depressed/lonely I’ve been and starting to take action to get out of it?
• Is it about sharing my writing? simply about exposing my blog to a wider audience?
• helping others as I process my own process?
• getting clearer on money and how to manage it?
• is it about clearing clutter from my home, or getting a bedframe?
• is it about my now being better able to relate to others in hard situations?
• is it about realizing how much help there is, what a great place I live in, and how much I love California?
• it is about actively using alternative medicine and questioning the reach of Western medicine (which, ahem, I’m pretty sure I was doing)?
• Is it about taking an improv class, and asking to sing with my friends’ bands?
• is it about a new haircut…?

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): Cancer. A Poem.

(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

"Come on, kid, Come on,/ One foot and then the other" ~ Dave Hause

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. 

Forget Sugar, A Spoonful of Mom Helps the Medicine Go Down

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. 

Joy, Revisited.

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. 

The Clatter of Swords.

There is a vacuum that happens when one admits surrender. When you have finally laid down your sword, all your fight, all your shaken fists at the sky. You let it all drop, all of it, knowing you can no longer fight, that you are defeated.

In that moment, when your armor clatters to the ground, and you look up toward your opponent with your empty, calloused and bloody hands, you experience relief.

There is nothing more to do. It is over. You may not have won, but no longer are you fighting either.

If, in that moment of surrender, you are able to hold that place of vulnerability and uncertainty, it has been my experience that newer, better ideas and actions, and strange serendipities, come to fill the void left by my own tenacity and fierce determinism.

If, in that moment, I admit defeat and then subsequently draw up my arms again, thinking, wait, no, there’s something else I haven’t tried, I can still will this thing, then I am lost, again.

I am in that moment. That moment of choice, when I will either say, no, this can’t be right, I still have a few ideas up my sleeve; or I will say, you know what, I give up, I have no idea what I’m doing, I need help, and I am willing to sit here in the discomfort and uncertainty of change.

This place is what some people refer to as hitting bottom. Many of us hit bottom around many different things: relationships, sex, food, debt, shopping, television, even reading can become an addiction at the expense of engaging in real life. Anything that we think we can out-master by the sheer will of our mind and will-power, anything that keeps proving to us that we can’t.

I am at a bottom, of a whole cornucopia of things. I think it’s what all the breakdowns have been lately, the bedframe one, the one in the hospital last week, the impossibility of me being able to do on my own what I have been doing on my own. The impossibility of continuing to struggle forth in single-handed combat. I don’t know any better. My best ideas have led me to being single, broke, and existentially agitated for years. And I can’t will, wish, pray, or beg my way out of it. I have come to the bottom.

The end of my resources, the end of my ideas. I think it’s part of the calm of yesterday’s blog, the realization that I’ve come to the end of the fight, that relief of the end of a battle. Recognizing I’m not the force that will rescue me, I’m just the conduit. I’m just, in some way, the pawn.

And, please don’t misunderstand that; I have free-will, I just mean that in the end (to tragically mix metaphors), there is a stream, and I can follow its course, or I can fight against it, because I still think my answers are upstream. If I allow myself to float, to let go, to be taken by the river, to stop resisting that which is true, then I have the chance to gain some of my power back. But aimed in the right direction this time.

I think my soul-weariness has been this end of the battle. I know I have “better ideas” lurking in my mind, ways where I can “figure out” how to get out of the jams that I’m in. But, perhaps just maybe, I have learned that I’d like some other ideas, please. Perhaps, just maybe, I’m willing, for today to sit in the serrated uncertainty of surrender, let myself rest in the fullness of that ease, and allow myself to be open to floating downstream.  

“The Force that through the Green Fuse Drives the Flower” ~ Dylan Thomas

I have heard it said that the only reasonable person to compare ourselves to, is ourselves.

I was questioning what really had changed for me during this time of illness and convalescence. What had I learned. Had I become more anything, tenacious, responsible, accountable? And I thought about where I was 7 years ago.

7 years ago, I was living in a studio apartment in Seoul, South Korea, nearing the end of my year-long English teaching contract, which was to end in February, and send me out again into the world. To give an idea of who and how I was at this time, I had, a few weeks earlier, made a bet with myself, to sleep in those 10 weekends with ten different men. I nearly made the bet. I was a stumbling, loud drunk. I was heartbroken over a guy who eventually told me that he “liked me a lot,” when I admitted that I’d been in love with him. I was a mess.

Why choose 7 years ago specifically? Well, it was three months, two continents, and one cross-country road trip later when I landed in San Francisco, and got sober. I always get a little reflect-y around this time of the year, thinking of how simply awful things were, and how I had no idea, well, not really much of one, of how much in a loop of misery I was.

My eye is healing. There’s a wonderfully gross looking scab on it, but it will heal. My friend yesterday was marveling at how our bodies have the miraculous capacity to rebuild, and reform. To normalize, heal, and recover, without much work on our part. It just happens. Our bodies heal.

Without much work on my part (well, I’ll take a little credit, and acknowledge the acres of people around and before me) my life has normalized to something. Something much different than it was 7 years ago.

I was informed yesterday that my landlord has not been waiving my rent, but, rather, I now owe about $3000 in back rent. And, you know what. So what. It will heal. It’ll take time, and planning and responsibility, but it will heal. It’s just money.

This whole, what am I supposed to do with my life, mind-trip, you know what? Either I’ll get it this life, or I won’t, and I’ll get the chance to try again next round. It will heal, or it won’t. I will still continue to do what I can and what is indicated to help me “fulfill my potential,” but you know what? In the end, it will be what it will be. I am not the force that pushes flower. I am just the green fuse.

Knowing that if I simply continue to do what has kept me safe and sober for almost 7 years, that I will be given the opportunity to heal and grow, that’s the only certainty. (And with the big ole cancer thing, time itself isn’t certain.) But the only thing I can do is put one letter in front of the other, cry when I need to cry, make a phone call when I need to take action. And just be. I am not the force. I am just the fuse. 

Blind at the end of the tunnel.

So, I left the hospital “Against Medical Advice” on Friday. Don’t worry, they still legally have to take good care of me, and gave me three antibiotics to take home with me, two which are IV through the plug in my chest that they trained me to self-administer.

The eye is getting better, and I’ll see an eye doctor tomorrow. It’s not great, but it’s getting better. I still have some signs of infection, but, time will heal.

I’m a bit emotionally tapped out, folks, so I don’t have much to say about what’s going on or how I am.

I’ve asked a few people to simply come and sit with me as a sort of “study hall” this week, meaning I need to get some logistical things done, like reply to some emails, open my taxes documents, and I know other people have stuff they usually need to do and push off too, so we can sit here and do it together.

I don’t really need entertainment right now, I just need companionship. People to hold the space for me while I do what it is I know how to do, and can do.

That said, I called a woman yesterday who sort of speaks my spiritual language, and has also been in Cancer World for a long time. A friend put us in touch back at the end of the year, and I knew I needed to speak with someone who got it from all angles. She was really helpful, and said something interesting: Sometimes you need to let people do the things you can do, so that you have the energy to do the things others can’t do for you, like heal.

So, yes, I can take my garbage out, but if there’s a friend here, ask them if they can. What she said was that we feel like it’s a big deal to ask someone to do something like that, because to us, it is a big deal to take the garbage out, but to them, it’s not.

I had a good friend come by yesterday, and simply sit with me while I called my chemo case manager and leave a message, knowing she’d get it first thing this morning. I was feeling so disconnected from help from the hospital, and so overwhelmed by the bureaucracy, that I needed a mediator. So my friend sat, as I went down my list on this woman’s voicemail, a woman who has always been very attentive and responsive to me. And, lo, today I now have appointments with an eye dr tomorrow, and another doctor on Thursday.

I’d say, “It’s not okay,” how all the Kaiser rigamarole is, but it’s just more like, I’m too tired to deal anymore. I am at the end of this, in the darkest before dawn phase, in the last mile of the marathon when the runner’s feet are bleeding and their lungs are burning. I’m having to ask for help differently now, but I honestly feel too tired to ask. I’m worn out, and I don’t know how to not be worn out anymore. I’m tired, I feel isolated in facing the behemoth that is Kaiser (the case manager just called me and told me I have to go through the online email system to ask a doctor a question about my medication that's causing me splitting headaches, and at this point, it just feels like too much), I feel alone in having to treat my eye, my fever, the headaches, the self-administering of IV drugs. I feel tired.

And I don’t really know what to do. What will help. What I need.

I’m glad I’m alive and all. This morning, I wrote a gratitude list, and a forward-looking “Now that I’m healthy, I’m so glad I get to …” But it’s still hard. And I’m so damn tired of it being hard.