(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.