Friday, March 16, 2007

All That Matters Is . . .


It's almost ironic that, finding myself pregnant with cancer, I'm drawing strength from what I've learned as a fledgling birth activist. A staunch VBAC advocate, fighting for the chance at a 26-week cesarean? A family-unplanner, researching sterilization surgery? It's not easy to apply my old convictions to my new situation. But it's helping.

Tonight I'm thinking about gratitude. Survivors of birth trauma are haunted by the reprimand that they "should be grateful," because "all that matters is a healthy baby." Reading You Should Be Grateful, the groundbreaking essay by Gretchen Humphries, was the starting point for my healing after my son's delivery -- during those first months when I worried that I wasn't "grateful" enough for my healthy child to forget the pain of a lost birth.

And here I am, at another starting point. The first day that my doctor called with a cancer diagnosis, I found myself huddled under the covers in bed, bargaining with God. And I heard myself say it -- "Lord, I will give up everything -- all that matters is a healthy baby." But I knew this wasn't true. I knew might be forced to judge -- brutally so -- exactly how much value I placed on this child's life. But I also knew that, however my other priorities might fall into shadow, they would still always matter. And what else could possibly matter? I've made a list:

Strength and Mobility Matter. I'm scared of the prospect of being temporarily immobile, incontinent, and disabled if I have a hysterectomy with a newborn. I'm trying to imagine this as a slow and quiet season in life, expecting little of myself and others, thinking only of healing. But I know it will be frustrating. If it hurts, I will let it hurt.

Bonding and Breastfeeding Matter. A cesarean-hysterectomy can take over five hours. Pain and recovery can be compounded many times over, compared to a cesarean alone. But the more I'm in the hospital, the more I learn not to fight pain medication, catheters, and IVs when my body still needs them for healing. This means that the first hours, or days, of my child's life might be spent without me able to feed or interact with them. I will grieve this.

Fertility Matters. By the end of the summer, I look forward to having two beautiful, healthy children to call my own. I live a life of abundance, filled with more love that any one woman deserves. Still I choke back tears when I read Hop on Pop. "Father, Mother, Sister, Brother/This one is my other brother." My children will not have "another brother." My family destiny has always been a matter of spiritual and marital trust and enterprise. It's an open horizon, closing into finition for reasons beyond my control. I will grieve this.

Youth and Sexuality Matter. About half of hysterectomy patients show signs of early menopause. Yes, I hear everyone's mother and mother-and-law have been doing really well lately with or without hormone supplements. They are inspirational to us all. I'm just not ready to be them. Whatever happens to my body, I will cope -- proudly, and with all the dignity and grace I can. But I will grieve whatever I lose of my 33-year old body.

Birth Matters. I still don't know whether a cesarean will be my safest bet in this situation. If it is, I'll deal -- but I won't like it. I will grieve my lost birth. I will feel disappointment and anger. I will write, sing and share this pain until I am healed. I will do this knowing that it cannot -- ever-- compromise the love I have for my children.

I'll probably think of other things that matter, as I go. I don't do this to be negative. I'm so, so grateful for the chance to have a healthy baby. Having thought long and hard about our lives (and deaths), I know exactly what "matters" most about me and my baby. But even if I don't lose it all, I'll still grieve what I lose. To deny this would be to lie and cheat myself. To accept this is to accept life and loss -- and to gain the strength to move through pain, to eventually find something more.



Friday, March 09, 2007

Seeing Thestrals

Good news here -- Last week's surgery comfortably removed the tumor with room to spare. The pathology report indicated clean margins, no lympho-vascular involvement, minimal invasion, and other various happy things (all interspersed with the word "carcinoma," again and again). I spent yesterday getting MRI scans, and will still likely need a hysterectomy after delivering this baby. There is some risk in delaying treatment for a few months, but it's easily outweighed by the opportunity to carry the baby safely to term. So I can start saying "due in August" again, after all, without the catch in my throat that says "or so I hope."

Now after three weeks of waiting, the world seems so much brighter. I can take my boxed-up maternity clothes out of the attic. I can look at my son, and see him as the beautiful older brother he's going to be. But I feel a little like Harry Potter at the beginning of Book 5 -- when he's shocked to see that the magical Hogwarts carriages are drawn by skeletal winged horses that he's never noticed before. The beasts are called thestrals. Harry sees them for the first time because he's seen death.

I won't be melodramatic -- I live a lucky and luxurious life where I'm pretty much insulated from these things. Especially my own mortality -- me, a healthy, 33-year-old woman who has only been to three funerals, ever. But I think I'm starting to understand how it works. When I first got my diagnosis, I explained indignantly to my loved ones that I am FINE. This cancer cannot be a threat to ME, because the prognosis (when properly treated) has a stellar survival rate (as far as cancer goes). But really, I was trying to say, "you don't understand. I'm Robin. I'm right here. My life can't be at risk -- that's not the way it is."

But now I've had time to think about the way it is. In more painful moments, when my heart cried out "Why this? Why me?" the answer was too simple: "What the hell were you expecting?" How can I have a life-threatening illness? Because all of us die. Or as I've started flippantly saying, "we all have cancer." It's just a matter of whether we'll live long enough for it to slip out of the shadows and into our nuclei. All 6 billion people living on Earth will eventually die; I'm not particularly special, just because I'm looking it a little more closely in the eye.

The ugliness of this reality -- like the grotesque thestrals with their leathery wings -- can be overwhelming. But it's reassuring to see the truth that's been invisible until now. This life isn't magic. It's finite, even temporary. I'm not immortal. And this reality can make every little thing (and every big thing) -- the pregnancy, fresh tulips, a hug, toy trains, my family -- that much more delicious.

Monday, March 05, 2007

The Audacity

If you haven't been keeping up with me, I'll warn you that things around here have turned serious. My life has entered into the Twilight Zone -- and not one of its happier edges where Santa Claus is real. I have cancer; I don't know whether my baby (due in August) will survive the treatment. I apologize, because I'm sick of dropping the depressing news on people who know me. But it's become ridiculous to pretend it's not happening.

So I'm learning about hope, and I'll title this along the lines of Senator Obama's book -- The Audacity of Hope -- because I feel absurdly audacious these days when I answer "How are you?" with a simple "fine." I'm not "fine." The past three weeks have been all about waiting. Waiting for doctors to call back, waiting for test results, waiting for surgery to be scheduled. Each time I wait, my life pauses for hours or days, and I can decide whether to be fatalistic (to avoid disappointment) or hopeful (and risk discouragement).

And "getting my hopes up" is something I've thought about before, in pregnancy. Pregnancy means "expecting." For months on end, we really don't "have" anything but heartburn, swelling, eventually some kicks and tumbles in our bellies -- nothing but the expectancy that this will lead to a day when we look into the eyes of our newborn child. Pregnancy is all about hope. And when it comes to the hard stuff -- whether to give birth naturally, whether to get your heart set on breastfeeding -- we're often afraid to hope for much at all. We tell ourselves, "I'm being flexible, so I won't be disappointed." As if it's the moment of letdown -- and not the actual loss -- that can ultimately hurt us.

So we protect ourselves with low expectations, and this isn't always enough. In my last pregnancy, I failed to prepare for natural birth (of course, not helping my chances) because I was afraid to admit I wanted it. I thought that, if I avoided conviction about birth, I would avoid disappointment. But the pain came anyway, even when I had so carefully avoided "getting my hopes up." How could I grieve something I tried so hard not to want?

Because some things suck. I decided, early in this pregnancy, that no matter how hard it is, I'd go ahead and hope for the best. That used to mean "insisting on VBAC" instead of "Maybe they'll let me have a trial of labor." Now things are crazy, but I'm hoping anyway. "Disappointment" isn't my worst case scenario any more. I have cancer. What do I have to lose by getting my hopes up?

Hope looks different around here, each day. Last week, I said out loud "I've decided that I'm fine," and ended up with my hopes crushed to tears after reading two more independent pathology reports. Yes, I felt stupid and embarrassed for having high expectations. I could have spent that week expecting the worst, and I wouldn't have any "hope" to be "crushed" when the oncologists came into the consultation room. Was I in denial, or just being optimistic? Was I feeling the pain of "crushed hopes?" Or just the pain of this damn situation?


This week, as I wait to hear whether last week's surgery got "clean edges" around a tumor, hope means shopping for baby clothes (just a few) without thinking too intently on when they might be worn. Hope means sending out job applications, without knowing for sure when I'll be available for work. Maybe this is delusional. But I can't clear a year off my calendar in case I end up unable to walk. I can't ignore the child wiggling in my tummy, when a few brief weeks of affection might be the most love I'll ever be able to give.

It's an awful, awful struggle. But I can't live as if I've already lost it. So, at the risk of "getting my hopes up" -- I'll go ahead and raise them high to shine in the sun. And see what happens next -- Maybe I'll even go for that VBAC.