The how and the why

April 8, 2008

Thank you all for your great enthusiastic and supportive comments this week and weekend.  I’ve been going through a rough patch, and it all feels so … hopeless. 

But I see now that it’s only temporary, and that I WILL get better soon.

To answer a question from yesterday on HOW my ribs got out of place: here’s the theory.  The cancer in the right breast grew so fast and so strong that the weight increased faster than any muscles could compensate.  The heavy breast pulled on my muscles, which pulled on my ribs, which pulled them right out of place.  This caused the pain in the front of my chest and around to the back, since ribs do go all the way around.  Then even after the breast was cut off, the ribs were stuck in place behind my vertabrae and the muscles around them still hurt and the nerves still pinched and I was still getting pain signals from the ribs themselves, even though the weight was gone.

A knowledgeable PT is worth her weight in gold.  And, speaking of gold (but not Bretta’s weight!), I just found on the web site as I was linking yesterday’s posts, although the DC Center for Integrative Medicine doesn’t take insurance directly, many people can be fully or partially reimbursed by their insurance companies; they also have started a fund for those who can’t afford it.  More details at the link in the last sentence.

And now to the why. 

I often (between treatments, playdates, Little Golden Books, endless trips around the little wooden traintrack, Richard Scarrey adventures labeled with every little thing, veggie-pushing, banana-treating, singing, napping, and hugging my children before they get too big to be hugged) wonder why on earth I got this disease.  Why do I have cancer?  What good could possibly come out of me fighting this agressive disease, without assurance, or even odds that I’ll come out the other side?  What terrible power would sentence me to this, and my little boy to the heartbreak of being torn away from his mommy each morning as I go to treatment, sure that I’ll be tired and grumpy on my return?  What force would want to rip me away from my babies, temporarily as I heal, or forever?

And I worry.

I worry about what I did to deserve this.  I worry about what legacies, or comfort, I can leave my children.  I have resisted writing them letters, because it feels fatalistic, as if I’m ready to go the day I seal those envelopes and address them to a 10-year-old Widget, a 15-year-old Widget, an 18-year-old Little Bear, or to both on their wedding days.  I want to, but I won’t do it until I’m in the hospital or hospice for good. I just won’t. 

I have to trust that the good in God and in the world will take care of them until then.

And so part of me wants to write here about the good in the world, to increase its power and its reach until there is enough leaking out to heal me (selfish!) and to wrap my boys in comfort, and to be a better place when they grow up.  I have always wanted to make the world a better place, and part of my frustration with this disease now is that it has me powerless and stuck – again – in bed as my body fights the cell death and tries to recover from the tens of MeV of radiation that we assult it with daily.

So today I have something else good to tell you about: the BlogHers Act Mother’s Day Project.  I’ll tell you more about it as I can, but this link is a first effort to help spread the word among us bloggers, and I’ll be back in a day or two with more info about the projects themselves.  And we’ll see what we can do, working together.

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Edited to add: Big hugs today to my friend Splashgirl, who starts radiation today.  May hers go smoothly and easily, as mine did until week 6.  If you haven’t met her before, go follow her on Twitter or check out this post.


It’s all been a jumble

February 8, 2008

It’s all been a jumble lately, an unsavory gumbo of pain and darkness and anger at the cancerS, seasoned only slightly with goodness and light and the corners of friendships peeking through, friends who don’t want to intrude but are there, ready to step in again when it looks like the right time.

I don’t know when the right time would be, exactly.  I’m not handling this well at all.  I thought that surgery would be the end of fighting the cancer, and that I would feel so much better afterwards, but I’m just not there yet, to be honest.  I’m in pain still, and can’t move my right arm worth anything, I’m so tired, and it all feels so much like I’ve been here before.

My yoga teacher actually verbalized that for me.  When she saw me on Monday, she hugged me, helped me modify the exercises (since I wasn’t even 2 weeks post-mastectomy then), and reminded me, “You’ve been here before.  When you first came, you couldn’t use your right arm then either.  But you worked through it, and it came back.  You can do it again.”  At the time, I was cheered by it.  Of course!  I have been here before!  I’ve been in pain before.  I’ve done bed rest before.  I’ve suffered the loss of the use of my right arm before.  Only then, it was due to the heavy tumor pushing aside my nerves.  Now, there is no more tumor.  There is nothing left to fear.  We just need to soothe the nerves that were jumbled and put in disarray by the mastectomy, and help the muscles stretch back to their original length and place.  It should be do-able.  It is do-able.  And I left with new resolve.

I slept all afternoon, and then, worried about the fluid sloshing around on my chest, made an appointment with my surgeon for Wednesday.

She, however, looking at the scars where my breasts used to be, feeling for the fluid, and tenderly tucking the swollen dog ears behind me, determined that I was healing well and did NOT need to be drained of fluid with the large syringe that she had ready.  She told us that I was healing well and better than expected.  I left with a light heart, and we walked around the city until my next appointment, delighting in the sky, the breeze, the construction site (yes, I have two young sons; it’s now a habit), the chance to stop at Trader Joe’s without a mini-cart and a balloon, and the opportunity that maybe — just maybe — I might run into someone I used to know, in another time and place, perhaps.  Well, this place, but another time, and another me, the me before I became a body that carried cancer around with me, and a soul to match.

We kept my second appointment, walking up the steps of the Integrative Healing Center where my new physical therapist and lymphodema prevention specialist works.  Stepping inside felt like stepping into a suite of healing light, a community of caregivers for the soul as well as the body, a place where hot herbal tea was always available and the examination tables were always comfy.  Bretta welcomed us to the space, and performed such amazing work over the next hour I was delighted to pay whatever she asked, even though my insurance is no good here.  She brought healing to my wound sites, softness to the swelling under my arms, and she worked on my poor shoulder that has caused me such problems and pain; it was immediately apparent, and she took it up like a pet cause, stretching, bending, popping it back into place, and explaining what I was to do at home to train it back again.  I left a new woman, delighted and relaxed, and turned to my husband telling him again and again, “I’m going to live!”

And then I went to support group that night at the hospital.  A group of young women with cancer, banding together to support selves and each other.  I was happy to share my news of cancer caught early and thrown away, happy to hear the news of others: chemo finished, mastectomies upcoming, radiation burns healing, hair finally beginning to regrow.  A pregnancy.  The first in our group of young women so concerned about fertility, but first concerned about death.  We all rejoiced with her, and peppered her with questions.  How did your ovaries survive the chemo?  Is ovarian suppression fully approved?  What about the hormone therapy – did you do that too, and how did you get pregnant through that?  We were so happy for her you’d think we were a roomful of pregnant women welcoming her into the secret society.  But instead we were a roomful of women without breasts.  Without ovaries.  Without, in one case, a rectum, actually, as we have a rectal cancer survivor/fighter in our group as well.  Pregnancy seems so far away.

But it isn’t, really.  I have to remind myself sometimes that it was only a year ago that I was pregnant.  That my body worked so well that I was able to carry a new life inside it, nourish that life, give birth, and support another little body with my own.  Milk that I made myself, and served up at just the right temperature and just the right time.  I was his world.

Now I am only a part of that baby’s world.  As has been true for so long, I can play with him on the floor, but I cannot pick him up.  I cannot hold him, or rock him, or put him to sleep in the crib when he falls asleep in my arms.  And my heart is breaking.  I want to be all things to him again.  And yet, I know now that that can never be so.

For while I have been broken and healing, he has been forming relationships with others.  He is the darling of four grandparents, the heart of his father, and the constant companion of his big brother.  Even the dog is getting used to him. 

Soon he will come along on every playdate, gaining friends my age and his, and then it will be time for school.  He never will be mine, and mine alone again.

So I watch eagerly as Canape births her baby, nourishes her baby, snuggles her baby, and loves her baby.  Make no mistake, the time with a newborn is not easy.  There are so many things to learn, and to do, and to provide comfort to another little person while one is so overwhelmed still by birth, by healing, by lack of sleep, and by the inevitability of change is not easy to do.  Nothing about having a newborn baby is easy, despite the hallmark images and oohing and ahing that we more experienced parents are prone to do as we see, and as we remember, but we don’t really remember, do we?  We don’t remember all the struggles and the scares and the counting of the wet diapers and the recording of the breastfeeding, and the is he eating? moments and the fears that maybe he stopped breathing overnight, or maybe just in the last five minutes since I put him down, I should go check on him, and the oh, he’s squealing, he needs his mama, even though we haven’t so much as been to the bathroom by ourselves today, much less showered, the anxiety that comes when we’re not sure what he needs, but the fear that overwhelms that, because shouldn’t we know what he needs? he is our baby, after all, and he was a part of us just last week, but then the tears come, and the weepies, and the worries that maybe we’re not a fit mother after all. The fears that are universal, but we just don’t know it.  The fears that threaten to make us question our fitness to be a mother, and that is the question that will cleave us in two, and hurt more than childbirth itself.  But little do we know at the time that it is these questions, and these fears, and this perseverence that arises, and the determination to solve the problems and comfort the baby and make everything right again that are still part of childbirth.  It’s the birthing of a new mother that happens in these days after childbirth.  It’s not easy, and it’s not quick, and it’s surely not pretty, but it is important nonetheless and will help each new mother grow to become baby’s mama (or mommy or momma or mother, as chosen by mother and child).  These are fears and worries and doubts that have plagued us all.  This time of mamabirth is so very hard, and so dark in that few women talk about it in the light, and so very few before this wonderful communal journaling that is blogging.  So with this I wish her and all newborn mamas luck, and stand by to offer any advice and comfort that I possibly can, but one thing stands out to me still:

He is yours, and you are his.  And for a time, that is all that matters.