Quiet

 I haven't blogged in a while because I got too tired. Too tired of trying to make meaning of all of this. It seems that the smartest thing I can do for now is to lay it all down. As with any dark cloud (that you survive), I have faith in the lessons that will result from this and in the silver lining, in general. But I thought then and I still think that it's best for me and my brain to take a little vacation from meaning-making.

The update is that I'm poised between recovering from surgery and radiation, which begins on 11/5 and ends on 12/20. If I could think of any way to get out it, I would. But I'm too smart for that.

Chances are if you are a reader, then you are also a friend. And I thank you sincerely for both. The readership has meant the world to me, as have the cards and calls and email. Love and care from others has fueled me through this very challenging chapter.  But to everything there is a season. And I believe this is my season to be quiet. But thank you. I'll be in touch.
 

Patient State

First the good news. My sister and I spent a day at Dana Farber on Wednesday. It was exhausting but resulted in better-than-expected news all around. The imaging didn't show the tumor, only the clip that they placed in it. This means that it has shrunk so much that either it's gone or its microscopic. There are still dicey currents to pass through (lymph node extraction, clean margins, etc.) but I was told twice, by my Harvard-teaching surgeon that my tumor wouldn't shrink this much. Once again, cancer reminds us of its idiosyncratic nature.

I return to the question again and again. Why me? Why do I seem to be getting lucky? My best guess is that I've benefitted from a holy triumverate of prayers, state-of-the-art treatment, and my otherwise overall health. It could also be scientific. The radiologist told me that the fast growing cancers tend to be the ones that respond better to treatment. Who knows? How can we ever answer these questions? Why do any of us keep trying? Anyway, here is another question. Why not me? People get cancer every day. One in eight women get breast cancer. Why not be the one who gets it? And then, why not be one of the many fortunate women who are cured thanks in no small part to the terrific advocacy from survivors, mothers, aunts, friends, daughters, and cousins? Why not?

Robin Roberts was interviewed about her disease and she reported that for her, the journey is as much mental as it is physical. Truer words I've not heard. My physical symptoms to chemo were often cumulative and irritating but for the most part, they were manageable. Throughout this I have been able to live my life and do the lion's share of the things that I needed doing, including parenting and working. It's been the mental trip that has been so exhausting and demanding. Round about month three, I mentioned to my oncologist that I felt at times that I was losing hope. She corrected me and said I wasn't losing hope, I was losing perspective. I think this is right. While losing hair feels like a particularly obvious and cruel side effect, losing perspective is by far the cruelest.

I've begun to liken chemo to the experience of addiction relapse. It's like you are an addict, trying to get clean and sober. You hang in for a bit and then you fall off the wagon and poison your body. Then for a week or so, you have to climb out of the hole and do all the physical and mental repair that is associated with a relapse. You have a few good days and then bam, you are back in the crack den again. Right now I'm ten days out of my last treatment and beginning to feel like myself. The blue sky and beatiful September weather are things I can relish. Only this time, I have the benefit of knowing I won't relapse again.

I returned to yoga this weekend for the first time in three months. This is the longest stretch I've gone without yoga in years. I was surprised to find that my muscle memory isn't as washed away as I'd feared but also surprised to learn that I no longer know how to breathe and relax in the same way. Being in yoga made me teary. It brought forth feeling of loss. But thanks to this disease, I think I've integrated a new understanding of death and rebirth into my living. Just as we support kids with autism with a, "first this-then that," paradigm, I get that first I have to grieve what I've lost these last few months. Once I've done that, I can open myself wholeheartedly to the gifts and perspective that an experience like this can bring. My tears in yoga tell me I'm still grieving, in spite of my promising circumstances. But I have faith that this work is important and will pay dividends. It just takes a whole lot of patience.

Oomphalos

Day 1 Post Chemo:

I usually feel pretty good for a day or so after treatment because you get a little bang from the pre-meds. I'm in that now. I can glimpse my regular living until Taxol takes over tomorrow and turns me into a pill. People keep asking me if I'm going to celebrate and I've been feeling like I should do something. But I'm reminded that I'm well past lliving a life of should's.  We each have our own ways of celebrating and a party just doesn't feel in order. How I hope to celebrate is to return quietly to my regular life. To celebrate the afternoon light as it cascades through the bannister on my staircase. To kiss my children as they sleep at night. To rejoice in my relationships and feel my dog's warmth as she curls up against my thigh each workday morning. I really think that just living will be a celebration in itself.

A friend recently shared an interesting model or a paradigm for self-actualization that I hadn't seen before. Here it is if you are interested:

http://www.brendanhughes.com/the-human-slouch-towards-narrative/

I think this has kinda changed my life. Prior to encountering it, I'd subscribed for Maslow's Hierarchy of Needs as the best approximation of adult growth but for a bunch of reasons, I like this Hughes model better. For one, concentric circles feels more holistic and more intuitive and less linear than a triangle. For another, this model holds the individual in the context of the larger, social community.  And of course, I happen to hold a deep conviction about the power of narrative to heal and grow.That's why I think it works at the macro level.

On the micro level, it addresses some very internal struggles I've had  in my adult life recently. I think after my partner left under such euphoric (for him) and embarrassing (for me) circumstances, I got stalled in the B ring, "the story you tell the world about you." I hadn't ever really confronted my own need for validation with such proximity and it might be the most uniquely yucky thing I've ever experienced about myself. I practically had an imaginary spreadsheet so that if I bumped into somebody that knew us as a couple, I could share my version of the story as I understood it. It was painful, ineffective, and completely without reward.  Likewise, when I look back at where I was at the diagnosis stage, one of my primary concerns (after my kids, my life) was what people in my community wiould think. At the time, I would have rather had organs removed than lose my hair,  because the former would have made me less visible. I just didn't want to be exposed again.

This is where the best two sentences from Brendan Hughes come in. "No one is watching. The cinema is empty."
Isn't that incredible? I think having to navigate the world with a bald head has helped me grow in this regard. I hate being bald. I hate it. But there was and is nothing to do about it. It felt wrong to hide so I mostly didn't. I grocery shopped, I presented at a conference. I took my kids on outings and to restaurants. I did the things I do. It turns out that even after all that effort, I have no idea what people think. It turns out it really isn't any of my business. It turns out this is finally how I'm learning to care a lot less.

I also love the concept of oomphalos. I've been trying to apply it to my bald head. Sometimes at night, I take off my hat and scarf and study my head. I find it pretty scary but I've been trying to look at myself through this lense of oomphalos. Why should I love or like myself less because I'm bald? Rather than be frightened, why not try to see this bald me as the one that anyone would fall in love with if they only knew me? Why not, right?

Thanks, B, for sharing this cool thing with me.

Three Things

Tomorrow is a day I have been waiting for for a very long time. It's my last day of chemo. And where I pictured I would feel jubilant, I feel melancholy. I guess the reality is that it's gonna be a bitch of week. Taxol wreaks havoc on my moods. "Taxol-talk," sets in long about Friday night, just prior to the radiating joint pain.  If one of my sisters puts a pillow over my head sometime in the next ten days, the jury should acquit. Seriously.   

Somebody asked me recently how it's been and I responded, "It's an incredibly isolating experience." I hadn't realized I felt this way until I said it. It has been an isolating experience but not without its valuable lessons. I've learned some and I'm going to try to sort it out and record it here.

My first take-away is that, looking ahead, I need to manage stress better as a way to preserve my health. I think my default position is always to 'be nice,' and I hear a call to be done with that. It's an annoying compulsion  it's not particularly effective at helping me meet my own needs, and frankly, I'm not very good at it anyway. I don't think I'm really that nice by nature in the first place. So it's time to release that whenever and wherever possible.

My second take-away is the lesson all of us are learning each day we find ourselves on this side of the grass. It's about letting go. I read Mary Oliver's poem, In Blackwater Woods yesterday, and got stuck (in a good way) on this passage:

To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it against your bones knowing
your own life depends on it;
and, when the time comes to let it go,
to let it go.

I'm letting go of some old beliefs I had about myself, about cancer, and about recovery. I'm dying to those beliefs while rubbing my eyes hopefully, awaiting new understanding or ways of being in this world knowing in a deeper, more truthful way how terribly mortal I am, we all are.

My third take-away is about being rather than doing. Life is busy-- there is a heck of a lot of doing to be done when a parent walks out. I always say that I  enjoy this work and further, that I take  pride and purpose in it. But just as an alcoholic enjoys a drink, that is not an indication that it's not time to quit . I've heard the call to slow down -- to continue to do what needs to be done, but to be more strategic about where and how I dedicate my energy.

These all sound good. The real challenge is always in the application. But even tonight, melancholia and all, I'm hopeful that I'll have time to practice.

More Amor Fati

Recently, author/blogger Katrina Kenison posted about amor fati-- the concept of loving your fate. She wrote:

"To love your fate is to believe that the way things are right now is the way they are supposed to be – even if nothing is quite the way we wanted or expected. We can either go down swinging, or we can die to the way things were and begin instead to live into them as they are."

I've been thinking about this concept of dying to the way things were. While I'm sure I've been dying to things all my life, I've only recently become conscious of it. One of the hardest things I've ever had to die to was the idea that I would raise my kids in the context of a healthy partnership.  I remember one night after my ex left, my daughter was crying  and I couldn't console her.  I actually went outside in desperation and shook my fist at the sky, I was so overwhelmed by her grief and my own. I truly thought I would carry that pain with me for the rest of my life. But here is the most remarkable thing: I grieved it and I died to it and I came out the other side understanding that my family is happier, healthier, and more whole as a threesome (plus doggie).  As I'm writing this, I realize that this example is the perfect expression of amor fati.  

So I've been asking myself, "What does it take to die to something?" I think my answer is that it takes equal parts faith and vulnerability. Having faith helps us remember that what we are experiencing is not permanent, it's a passage. Accepting vulnerability means understanding how little we actually can control. 

Recently, I've been dying to the idea that my body is invincible. My cleaning lady and I were talking today and I became tearful.  At the end of our conversation, she pronounced that after my surgery I will be,  "brand new!" I don't really understand what she means (and she is not the first to say this to me) but I wonder if it has something to do with amor fati-- that the work of dying to my old perception of my health will bring a way of living that is embedded in the strength and truth that lies at the center of living with vulnerability.
 
I remember when my daughter was little, she use to wear her blankie so that she would always have it with her without having to keep track of it. She'd appear suddenly in a doorway, all straight-faced, wearing first a blankie-turban, then a blankie-cape. Maybe, in order to become a lover of one's own fate, we've all got to make like my former four year old and wear faith like an imaginary turban and vulnerability like an imaginary cape.  

Cathedral of One

I feel a little bit sheepish writing about my belief in God. It's difficult in this culture and to me at least, this relationship feels highly personal. I'm no longer affiliated with my old church for reasons both mundane and idiosyncratic but that hasn't diminished my relationship with what I perceive as divine. On the contrary, my last few years have significantly strengthened my sense that we are not alone here and that we each have been singled out for a purpose or purposes. If you were to ask me what mine is, I have only the beginning of an answer. First and foremost, I believe I am here to raise these children under these particular circumstances. I feel called to this work at this time. Every day I wonder if what I do today will make it so that my grandchildren do not have to suffer the abrupt departure of a parent. I'd love to think that I could play some small role in ending this generational dysfunction. But I recognize that parenting is just one aspect of my life, I guess I think that the least that I or any of us can do  to justify our time and space on this blue-green planet is to try to be an instrument of peace. I have the prayer of Saint Francis on my bathroom mirror and the part that catches my heart each time I read it is the part that begins with, "Grant that I may comfort, rather than be comforted..." Would that I could wake up each day and not just talk about this, but walk this way too.

This morning I awakened early with a feeling of drift and an oppressive sense of worry. I've been rereading a book I read several years ago and benefitted from, LIT by Mary Karr. I opened to the chapter where the author is struggling to accept and integrate a higher power into her life. Her AA sponsor suggests that if she can't believe in God per se, than perhaps she might think of the group, with all its collective wisdom, as her higher power. She wonders aloud to her sponsor whether or not she should get divorced. Her sponsor suggests she ask someone in the group. So she asks some random stranger sitting on a folding chair next to her. And this is what he says:

"Get down on your knees and yield to what scares you. Yield up what makes you want to scream and cry. It's an empty football stadium with all the lights on. It's a cathedral... And pray. Pray to be an instrument of peace."

"What if I get no answer?" the author asks. His response: "If God hasn't spoken, do nothing. Fulfill the contract you entered into and wait. Go quietly and shine. Those not impelled to act must remain in the cathedral. Don't be lonely...just wait."

I closed the book and my eyes and I too, did what the group member suggested. I established a cathedral of one and offered up the things that make me scream and cry. And then... I felt better, calmer, more ready to face my day.

I was telling someone about this  and she suggested that perhaps my higher power was speaking to me through Mary Karr. That somehow, this author and her book became in that instant an earthly representation of my higher power, just as the AA member had been to her. It hadn't really occurred to me that perhpas God speaks to us through each other. And I am relentlessly stubborn in my belief that I am the supreme agent in my life. I seem to be somebody who needs frequent reminding that not only is this not true, but in the face of all this mysterious abundance, I am just a tiny, vulnerable speck. And I am not at all surprised to learn that the only way that God can get me to listen is through the pages of a book.

Tired

Can I say what I'm tired of?

I'm tired of my feet tingling.
I'm tired of feeling weak.
I'm tired of having nothing to shampoo.
I'm tired of scarves.
I'm tired of hats.
I'm tired of the look in my eyes.
I'm tired of radiating joint pain.
I'm tired of hot flashes.
I'm tired of treatments.
I'm tired of medications.
I'm tired of appointments.
I'm tired of sore muscles.
I'm tired of worrying.
I'm tired of feeling poisoned.

I'm just really tired.