Saturday, April 30, 2011

Episode 3: Where Fran discovers a creepy old man and a new superpower...

A big nap and another big hit of meds and I am in a much more cheerful mood, which as given me the emotional bandwidth to laugh about a few things. It's the little things that matter, right?

Years ago when I was training to be a Pilates instructor, my teacher taught me to really pay attention to the way I hold my body that might increase pain or fatigue. This has been helpful this week, actually, as so much of my time has been sleeping sitting up and moving in a really awkward way and trying to relax those worked up muscles that are running for cover. 

So during this body observation, I realized that I walk around during the day with my upper body slightly rigid with my hands clenched at my sides, much like the small people do when they are learning to walk. I didn't really notice this until yesterday when it dawned on me that I looked like Bob Dole gimping around with that pen stuck in his hand. Of course, then I googled Bob Dole and came up with this Pepsi commercial of Brittany Spears and Bob Dole with all of the exploding bottle tops and Bob watching Brittany in the dark with that rigid pen in his hand during his Erectile Dysfunction advertising heyday and that gamey look on his face and got completely creeped out. And now, thankyouverymuchinternetz, I cannot scrub it from my eyes.

The other thing that this body observation gives me is the notion that I have a new supertool. I am pretty much sure I can deflect bullets with my breasts now. I am also pretty sure Wonder Woman could too, but the television censors wouldn't let the public know. Seriously. It was the cuffs AND the boobs.
On the plus side, there are friends who truly understand...

Me: My new superpower is the ability to deflect bullets with my breasts.
Joanna: Good. I'll stand behind you.
Me: Too bad I can't shoot them from my breasts, eh?
Joanna: That's the next stage when you have nipple reconstruction. You can choose bullets, fairy dust or champagne.
Me: [peeing.]
Me: I think I am going to choose all three. One for every occasion!
Joanna: Great idea. Not sure if insurance will cover all three, but we can pass the hat.
Me: With cuts in the city budget, I am pretty sure they will need me on the force.
Joanna: True. You will be in high demand.
Me: I could be the new Bond girl, saving A2 from harm, seducing evil men only to entrap them with my guns...ha! guns for sure!

This opens up a whole new world of possibilities...

Update:  The fiesty and ever-firey Deb Fisch sent me this knock-out clip. Yes, I like girls of that caliber....bwahahahahahaaaa.  First the fairy dust, then the bullets, natch.

Where I talk about fake schlongs and my kids in the same post...seriously.

My sisters left this morning, pulling away in a huge Escalade-looking truck from the Golden Limo service. I am a blubbering wreck. For the past week they've been here helping out; cooking great meals, hanging with my kids, doing laundry, but most of all, providing an amazing amount of emotional support. And so now I sit here, feeling every bit as afraid and worried of trying to do this on our own as I did when my mom said goodbye after David was born. The worst part is, I couldn't even give them a proper hug goodbye.

This surgery and recovery has been a lot more difficult than I anticipated, not only from the pain and healing perspective (which is immense) but also from the emotional perspective. On the pain/healing side, I feel like I have a Rhino sitting on my chest, one of my medications has given me a hivey rash, and I'm still shuffling around like an old lady. On the emotional side, I think my new rack looks about as realistic as Mark Whalberg's prosthetic schlong in Boogie Nights. My sisters keep reminding me that this is a process, that this is a different state of being, that things have *changed* and that I am going to have to deal with it on a deeper level. I think I forgot to factor that into the equation. I think I didn't really realize what it was going to be like on the other side of this kind of surgery. As Nick says, it will become normal, not right away, but it will.

So my kids are great and adapting. Ava hugs my legs because she can't stand not to hug me. David rubs his head on my arm like a cat. They both deal with it when I am crabby and are only slightly alarmed when I get teary. Poor Nick got the flu the day I was in surgery and has been dealing with being sick the whole time plus everything else. We have moved Ava's birthday party to another location next weekend (fairy/jumping/bouncehouse/unicorn/cake/party). It's all about adapting at this point. Things are going to be fine.

I keep trying to figure out a perky way to end this note but it's not coming to me. If we could just get a peep of sun today, that would rule. That and a shower. Oh, yes, I get a shower today! And maybe a latte from Morgan & York. Hmmm. See, things are already starting to look up. Love to you all.

Update #1: I took a shower and golden light fell from the heavens. Seriously. Sunshine and hot water. Nothing better for a mood shift.

Thursday, April 28, 2011

She's ALIVE!

Not feeling terribly witty or catchy right now, but just wanted to write to say hello, to thank everyone for the amazing outpouring of thoughts and well-wishes, and to tell you that I'm home and hanging with my sisters and my sweet niece, Maeve.

It's times like these that I realize that I know some of the most remarkable people in the world. Love to you all. More soon.

Wednesday, April 27, 2011

Rounds 1 and 2 go to Fran

Guest blogger-husband post:
I just spoke with the plastic surgeon (and the surgical oncologist earlier this morning) and he said that everything went as well as he could have hoped in surgery today. Fran is leaving the OR now and heading to recovery. I'm hoping to get back to see her in an hour or so. Fran's sisters Lisa and Sara have been waiting with me at the hospital all day. Thanks girls! A lot of waiting, but a great outcome so far.

Saturday, April 23, 2011

Gracious Space

Yesterday, I got off of a conference call, pushed in my chair, shouldered my bag and left work for what may be three weeks. It was really strange and incredibly sad to walk out of the office feeling this ick feeling of not knowing when I was going to be back. I am leaving behind projects that I really love, people who have been incredibly generous and kind, time with colleagues that I find warming and satisfying.  And I am leaving for something that is unknown and scary, a rolling into the inevitable and, worse yet, inescapable that sits just paces in front of me, no matter how I drag my feet.

There is a tension between this inevitable/inescapable feeling of slowly being swallowed by what is coming and the simple grace of letting it happen. In the words of the Cowboy Junkies: "the one thing in my life that these years have taught is/you can always see it comin', but you can never stop it." Struggle as you may to wish it away, joke it away, freeze it out, ignore it, cry it out, scream it remains. Until you realize that it is what it is and sit with it, interface with it, level with it, accept it at your side and create a gracious space that allows you to be both afraid and fearless, loved and alone, valiant and cowering, illuminated and confused.

Because being "sick" is all of these things. With cancer, or at least early on-set cancer, you don't feel it in your body. It's like a little timebomb that over time you forget is ticking. It's the insidious guest that you forget is still staying at your house until the utility bill comes. It's the thing that causes you to chuckle, thinking surely that God has been worn down by the multitude of prayers hurtling heavenward and said "Fine! Fine! Enough! So I'll cure her (ping!). Can't you see I've got a lot on my plate right now?" It's the last minute reprieve from the path lab that comes minutes before the surgery that they perform to alter you forever...except it never comes. It's the three deep breaths and lights out and waking up, feeling around and trying to sort out which way the decision tree went in the OR.

So these anxieties are a little like that song about the boa constrictor...oh no, he swallowed my toe, oh gee he's up to my knee, oh fiddle he's up to my middle...Today I saw a friend and stopped the boa at the toe. I know I will get to Monday and see my sisters, have a little reprieve and keep him at my knee. By Wednesday, no doubt, he will be up to my neck. I keep breathing. I keep finding little things to hold on to (one of my dad's old wallets, mala beads and their 27 count made for me by my friend Molly (that reminds me of my girl Sha), my mom's fading but still present scent, cards from you all, pictures from Ava, hugs from David, a picture of Kali, deep rhythmic music, a smiling picture of my husband) that I can hold in my hand or feel on my skin to keep me grounded and not freaking out about what is coming. I know I will be fine, I just don't like getting there. I am not worried about the cancer (or so I tell myself), I am worried about the surgery. I am lucky, I am lucky, I am lucky. Breathe. Breathe. Breathe.

There was a song that was on auto-repeat for my sisters and me the entire time that we were living through the end of my mother's life. It has such special meaning for us all, but these lines from "Little Fire" always put the lump in my throat, every time I hear it.

"It says comes rest beside my little fire
We'll ride out the storm that's coming in
My friend, you know me and my family
You've seen us wandering through these times
You've seen us in weakness and in power
You've seen us forgetful and unkind

All that I want is one who knows me
A kind hand on my face when I weep
And I'd give back these things I know are meaningless
For a little fire beside me when I sleep"

So tomorrow is sitting with it, thinking about the religious tradition I grew up in and how there are lessons there about the process of surrender and triumph. Or, from David's wonderful Latin teacher's blog:
'non, si male nunc, et olim sic erit.'
'Even if evil is present now, it will not always be so'
Horace Odes Book 2 x


Thursday, April 21, 2011

A little humor on this sunny day

So, sorry if I am oversharing this week, but I have some follow-ons to previous posts. First, for those of you who went out and looked at Allie Brosh's work, I hope you almost wet your pants because that girl makes me *laugh*. BUT, not nearly as much as Lisa Seyfried, who penned her own Allie-style version of the photobomb pic of Ava and me post-haircut. Seriously, at work, nearly peed. Perfection.
(more after the picture...keep scrolling down)

 Then, my friend Anne sent me the piece that Tina Fey wrote on daughters. Let me tell you that the first person I'd send this to would be my mother. I suspect a similar version of this prayer got me through 1984-92 (and maybe beyond). The end was the best, because it really was how I felt having David. Every minute grateful. Hope this is worth a good laugh to you all.

First, Lord: No tattoos. May neither Chinese symbol for truth nor Winnie-the-Pooh holding the FSU logo stain her tender haunches.
May she be Beautiful but not Damaged, for it’s the Damage that draws the creepy soccer coach’s eye, not the Beauty.
When the Crystal Meth is offered, May she remember the parents who cut her grapes in half And stick with Beer.
Guide her, protect her
When crossing the street, stepping onto boats, swimming in the ocean, swimming in pools, walking near pools, standing on the subway platform, crossing 86th Street, stepping off of boats, using mall restrooms, getting on and off escalators, driving on country roads while arguing, leaning on large windows, walking in parking lots, riding Ferris wheels, roller-coasters, log flumes, or anything called “Hell Drop,” “Tower of Torture,” or “The Death Spiral Rock ‘N Zero G Roll featuring Aerosmith,” and standing on any kind of balcony ever, anywhere, at any age.
Lead her away from Acting but not all the way to Finance. Something where she can make her own hours but still feel intellectually fulfilled and get outside sometimes And not have to wear high heels.
What would that be, Lord? Architecture? Midwifery? Golf course design? I’m asking You, because if I knew, I’d be doing it, Youdammit.
May she play the Drums to the fiery rhythm of her Own Heart with the sinewy strength of her Own Arms, so she need Not Lie With Drummers.
Grant her a Rough Patch from twelve to seventeen. Let her draw horses and be interested in Barbies for much too long, For childhood is short – a Tiger Flower blooming Magenta for one day – And adulthood is long and dry-humping in cars will wait.
O Lord, break the Internet forever, That she may be spared the misspelled invective of her peers And the online marketing campaign for Rape Hostel V: Girls Just Wanna Get Stabbed.
And when she one day turns on me and calls me a Bitch in front of Hollister, Give me the strength, Lord, to yank her directly into a cab in front of her friends, For I will not have that Shit. I will not have it.
And should she choose to be a Mother one day, be my eyes, Lord, that I may see her, lying on a blanket on the floor at 4:50 A.M., all-at-once exhausted, bored, and in love with the little creature whose poop is leaking up its back.
“My mother did this for me once,” she will realize as she cleans feces off her baby’s neck. “My mother did this for me.” And the delayed gratitude will wash over her as it does each generation and she will make a Mental Note to call me. And she will forget. But I’ll know, because I peeped it with Your God eyes.

Wednesday, April 20, 2011

So me and this body? We don't get along...

I have a confession to make. I don't trust my body. It's not really that I don't trust my body. I've seen it do amazing things like birth a child without meds and manage to not freak out when boiling water was spilled on it. But we've had a long, hard relationship, this body and me, and I'm at the stage where I'm not quite sure it's going to be able to pull this off.

It's not the cancer that I am wary of, funny enough, but rather the reality that I am not a good healer. Get a scratch, gain a scar. Ages pass before simple wounds heal. I'm healthy, no bad habits, no reason for it to happen that way, it's just my body's own little way of saying "ha ha, you thought you were in charge but OH NO. bwahahahahahahaaaaaaaa."

If you know me well, you know why this makes me anxious. Wednesday's my surgery...wax off the old, wax on the new in a two-fer surgery which will keep me out of going under again...and, typically, there is this lovely little pocket of fluid (cough, egg, cough) that keeps collecting under my biopsied arm. "We'll just have you in on Monday to see what it looks like," the plastics nurse said. "Nobody's saying we'll cancel anything, Dr. Wilkins just wants to check it out." CANCEL? Who said anything about canceling anything?

Canceling means the domino effect goes into play. Mastectomy but no reconstruction = stretchers, healing from reconstruction, then chemo all the while being puffed up slowly but surely (weekly!) by the stretchers, then implants, etc, etc. All along the way, my body saying "see this wound? three weeks at least. This one?...hmmmm, were you planning on going somewhere? Didn't they restrict your flying? How does a clot sound?"

It means no boobs for awhile. It means more surgery down the road. It sucks. This is a three-phase process, remember? Phase I: Biopsy  Phase II: Surgery and Reconstruction  Phase III: Chemo. There is no Phase IV (that includes no Phase IV for recurrence either, damnit. We are just not going there.)

I am afraid of what the mammageddon might bring. Sometimes I wish that Allie Brosh (click on her name) was my very best friend and I could convince her to make a cartoon about the tumor, this egg under my arm and the rebellion that lives beneath my skin. I can see her drawing little smiley cells just waiting to flat tire my highway to happy healing.  She'd get my fear of Frankenboobs (those would be boobs that look like they were stitched on by ham-fisted minions of the underworld flamed up by evil red scars courtesy of...yep, the cells) and would probably understand this slight paranoia I have about needles in my veins. Ok, I can't even go there tonight.

I'm not really sure where I am going with this, but I feel like I am going to spend the next hour or two lying awake in bed with it on my mind. Just to send you off on a positive note, here's another Allie Brosh piece that every former kid and parent will understand. We all still have monsters that keep us awake at night, they just come in different forms.

Mindfulness, Part I

Observation: When you haven't had short hair for awhile, you may be slightly freaked out at the draft on the back of your neck at night only to realize it's your husband breathing next to you.

Sunday, April 17, 2011

Tending the girl child

Things are heating up around here. One week from tomorrow I go in for pre-op, my sisters arrive and we start the countdown to surgery on Wednesday. Yesterday, I chopped off all of my hair in preparation for chemo that will come soon enough. Today, I walked the aisles of Costco buying enough food and supplies to last a year, while simultaneously emailing my boss (who is wonderful, btw) that I thought I'd be back and ready for action on Tuesday (he knows better). The truth is, I have no idea what is coming post-surgery, but the one thing I know is that we will not run out of bread.

Preparing for these changes has been most significant when it has been in relation to David and Ava. We talk a lot about "what is going on with mom" vis a vis health. They are ready for the surgery, but don't know what all it entails. About a week ago, we started the "you know, guys, it's probably time for mom and dad to have some privacy when we get dressed" talk, stressing that this is just something that happens when kids get older (and from a logical perspective...Dad doesn't watch Grandma Pat get undressed which was a concept that totally gave David the willies). But it's the fine balance of shielding the kids from knowing too much (the mastectomy and reconstruction), the post-operative scars and "difference", versus letting them in to work through this with us.

So yesterday I took Ava, my beautiful, sensitive girl child with me for the hair chop. When I told her that I was cutting off all of my hair, she was horrified. "WHY?" she said. "WHY?" (hair, and long hair, is particularly important to Ava). When I gently told her that I thought it was a good idea because I was would be taking medicine that would make my hair fall out, she was even more horrified. So we made a deal that she would come with me to get it done and was a trooper. She saw how sweet, kind and gentle my incredible hair stylist is (every woman on earth needs a Peter...he's an encyclopedia of women's issues, the hub of the network, a mensch and a wonderful friend) and decided that she really liked the look. It was a really cathartic moment. Note the new hair...photobomb courtesy of the girl.

I think I am so sensitive to the need to be sensitive to Ava in this space is because in the past six or so months, amazing things have been twisting and turning around in my relationship with this girl child. Things that are so beautiful but sometimes so heavy that I don't know how to handle them. She looks to me for everything, she notices so much of what I do, she thinks constantly about my actions. It's an unbelievable feeling to be loved so much and to realize that she is learning to be a girl/woman from her observations. How I treat myself, her father, she and her brother, people I don't even know are all cues for her development as the woman she will become. She notices a different shade of lipstick, will comment on a funny thing I said, engage me in the most lovely ways. It's beautiful because I don't know in my life if I have ever felt something quite this intense from another being and it's something to honor and to hold sacred. It's heavy because I sometimes feel that I am not going to measure up, that I will disappoint her, that I might not be all that she needs, and, honestly, that sometimes it's just hard to be the object of that kind of intensity.

Motherhood of a girl child is wicked that way.

I have to remember the promises that I made to her and to myself. I feel compelled to hold her strong and make it all seem normal, but not to normal so if she faces something like this of her own, or with a friend, she can not be shocked by what is real. She's four in her body but not in her mind. She can handle this. She will handle things in the future based on how she sees me handling things now.

I'm not sure why this is hitting me so much now, but it is. 

I dug out Ava's birth story just to remind myself that this feeling was borne at the moment she rested on my chest and became my girl. And, I hope, it will be always with us, come what may. 

Tending, tending love.

[...So babygirl, that's the story of how it happened, through my eyes, on a lovely Sunday in May. Every night as I am dropping off to sleep at night, I look over at you and wonder what you will be like, how you will walk in the world, what I can do to help you be the most you can be. I think of all of the challenges that undoubtedly lie ahead for a young woman and I think of all of the ways I wish I could shield you from the harshness of the world. This feeling of protectiveness overwhelms me for you because having been a girl and a woman myself, I feel both afraid and excited for you and the future that lies before you. It's my greatest wish that we will always be close and that you will always have confidence in my love for you. If there is ever a time a chasm widens between us, I hope that this story and my love for you will help build a bridge. You came from me, you are my girl, how could I not love you? And while I firmly believe that we *choose* to be in relationships, that simply sharing blood does not mean that we are required to be close, my love for you was seeded in the womb, in that moment that you came from my body, from holding you all warm and wet on my chest. Having you and reflecting on these things has started to heal some things within myself and my own relationships that I will share with you some day. I promise to work hard at being your mama, I promise to try to be the best woman you know, and I promise to love you and to give you the understanding and care we all deserve. My love to you, babygirl. The journey begins. Mama. Ava's Birth Story  May 7, 2006]

Wednesday, April 13, 2011

Wax off, Wax on

I got my surgery date today! It seems weird and absurd to be excited about getting a double mastectomy, but I am ready to get things moving. So April 27th is the day. My sisters are coming to Ann Arbor with little Maeve and are going to cook and hang out in my king-sized bed and talk and crack jokes and have good talks. They are the best sisters you could hope for. David and Nick will be awash in estrogen and a haze of pinkiness while Ava and I relish the girl time. It's going to be the best given the bad.

This morning marked the first morning back on the road to work in what feels like a very long while. I climbed into the Pod (my car, which looks like a little escape vehicle from the Death Star) and pulled out with 80 minutes of time to think with Paul Simon's album, The Rhythm of the Saints, offering something deep in the resonance of the percussion and the nuances of his lines.

This morning my mind traveled over the past week, in and out of doctor's appointments, beautiful moments with my children and friends, and the lovely morning sunshine before it rested on what seems to be a theme that I have been wrestling with as long as this whole health issue has been going on. In the plainest terms, I miss my mom. Coming back into a hospital environment has brought back so many memories of the year of my mom's own illness...the hours spent in waiting rooms, the conversations with people whose kindness is palpable, the conversations that are equally kind but incredibly awkward, the feel, look and smell of the hospital environment itself.

On Friday, Nick and I sat crammed in the pre-surgery waiting room with many others who were either in for a procedure themselves or who were helping a loved one. It felt like the airport lounge in a third world country, people sit for hours waiting to leave, shuffling and turning in uncomfortable seats, never knowing exactly when they will be called, full of emotion at goodbyes or hellos. Nick spied someone he knew across the way and as they talked, the man's wife and I bent our heads in that friendly-but-awkward conversation that people struggling with a similar-but-not-same illness have.

She was a lovely woman, full of insights about the path of chemo, ideas for meditation CDs and healing touch therapy. She had gorgeous blue eyes that sparkled and a vivacious smile that bloomed from her face and her closely cropped (grown in) hair. She was fighting a treatment-resistant form of cancer, still trying to be optimistic as options were running out. In 20 minutes she had made a lasting imprint on my mind and heart.

So I am driving I-94, listening to this soulful music and, like so many people that I met during Mom's treatment, I wonder what will happen to her. And in that moment, I am filled with this incredible sadness that I can't describe to anyone that hasn't been through the slow, sad, winding down of the life of someone they loved. Thinking of Mom, thinking of Julie who was taken from her family way too early, thinking of hope and loss and the incredible pain, yet incredible honor it is to be with someone in that space. I think I have a little PTSD about hospitals now. I think I have a lot of work to do letting go of my mom and coming to terms with the last year of her life. I know my sisters swim through this deep ocean too, and as they come and sit with me and hold my hand, I hope they will heal a little as I have just treading water in this space. It's one thing to miss Mom, which I do desperately. It's another to relive the intensity of that year of loving and caring for someone who was incredibly sick, all the while knowing that it was just a matter of time before they would be gone.

I don't know if anyone else that has "caught it early, I'll be fine" cancer feels this way, but at times I don't feel like I deserve to be in the same category as these people who are so valiantly fighting for their lives. There is a survivor guilt that is fresh in this space, a feeling that the attention you receive makes you almost a fraud compared to the fight that other people wage. I know I will get many emails admonishing me for this feeling, but it's true. I know what a steely adversary cancer is and I am minute-by-minute thankful for the status of my illness. Today I promised myself not to waste a good crisis with inaction. Tomorrow I go for energy work. This weekend I see friends and listen to drumming that will feed my soul. In two weeks, I will receive surgery that will take something away but will keep me whole upon the Earth.

I am grateful.

And I believe in the future
We shall suffer no more
Maybe not in my lifetime
But in yours I feel sure
Song dogs barking at the break of dawn
Lightning pushes the edges of a thunderstorm
And these streets
Quiet as a sleeping army
Send their battered dreams to heaven, to heaven
For the mother's restless son
Who is a witness to, who is a warrior
Who denies his urge to break and run
Who says: hard times?
I'm used to them
The speeding planet burns?
I'm used to that
My life's so common it disappears
And sometimes even music
Cannot substitute for tears.

-The Cool, Cool River    Paul Simon

Monday, April 11, 2011

Little Fire

I got the all-clear call today that pathology came back as negative (for sure for sure) on the sentinel node biopsy. I guess in 20% of the cases it doesn', glad that I didn't have that to stress about over the weekend.

Of course, it can't be all smooth sailing. Oh no, the body has to keep you in check and so I am going to UM tomorrow to have a little swelling issue checked out. It's likely not a big deal, it's just that one of my girls is, um, larger than the other and I need to have someone give me the all clear. I find that I am like a pendulum swinging between being a raging hypochondriac who checks her temperature every 5 minutes and, well, my mom who would say "I'll just take this antibiotic left over from when Hunter got sick in 1984 and everything will be fine." I mean, less than two months ago I was not "sick". I was sitting in my living room stuffing envelopes for a SK event chattering on about how I needed to get a mammogram because I had a little thing to get checked out. Now I am "sick". People look at me differently although nothing has changed. One family member said I had lost weight (I am, actually, shorter and fatter than I thought I was, verified by the incessant weighing and measuring at appointments), another was amazed at "how good I look". Others just kind of look at me with this really sad look. And so I make a lot of jokes because it not only helps me (and man, does it help me!), but it cuts the tension of what could be really. fucking. sad.

I was im'ing with a friend the other night and told him that I had this image in my mind that I was standing on a beach facing this wonderful group of friends and loved ones with my back to the water only to realize that the concern on their faces reflected the enormous tsunami rising over my shoulder soon to wipe me away. That I am ignoring the impending months of hellish chemo and healing thinking that I will be fine, just fine, totally fine when in reality everyone sees something that I don't.

Instead, he told me that the faces of friends were just reflecting the love and concern people have and they were waiting to see what I needed from them, how they could help best. It was such a zen thought. It's all about love or fear, the two greatest forces in the world. And instead of reflecting fear, I am choosing love.

Through the past few weeks, I have realized just how lucky I am right now, in this very moment, with this very diagnosis. I am not my friend's story of being diagnosed stage 3B with two tiny children at home and "possibly" a year to live (she just celebrated 6 years, btw). I am damn lucky to be negative for lymph nodes, to have caught this early and looking at the possibility of a very likely long life unless I get stabbed by a sting ray or hit by a car while texting and walking across the street.

And, in truth, I guess it's better that I don't know if the tsunami is going to drag me under for awhile. I now realize that you, the folks on the beach, are my higher ground, the ones who have the line to throw out to me and tow me back in, the ones who will hold the lantern and brave the elements with me while I cast about on the shore looking for some of the things that I have lost or that have been taken from me.

We are all we have...each other to comfort in the shitty times and to celebrate the good. Part of life is letting people love and care for you. Part is being that shoulder for another. Part is knowing the privilege of health and not having to go through what others face. We are all we have...each other.

On March 29th, I made this little note for myself that I think describes how hard it is sometimes to let people love you, to let people care, to need help:
"Unleashed the email and the news has gone viral. Squirming from so much love and attention being thrown my way. It’s a weird sort of hair shirt…but one I am going to have to learn to endure and appreciate as it will be the thing that keeps me from the cold."

So I didn't intend for this to be a morose post. I intended to say "Whooo hooo! All CLEAR for reals!" and I am celebrating it. But on a much deeper level, I am thinking through some deep and complicated feelings about love and care and acceptance and appreciation. Love to you all. Thanks for everything.

Sunday, April 10, 2011

Prepping for the next stage

So I am spending the day today thinking through what comes next. I have decided to think of this journey in phases.  Phase I: Sentinel Node Biopsy, Phase II: Mastectomy and Reconstruction and Phase III: Chemo.

Truth be told, I am more freaked out about the chemo than I am about the surgery. I think if I had time warped back 15 years when reconstruction options were not as good, I would be a basket case about having the surgery and what that meant for my appearance and how I would miss aspects of my female self. But, feeling relatively good about those options, given what they are.

Now, the chemo is another story. The baldness. That gaunt "chemo" look. How in the hell do you make being bald look good? How do you "wear it well"? How do you get over the vanity? How do you not mind the staring that inevitably comes from curious people? I remember the pitying looks people used to give mom and I can barely stand the thought. That, and how being bald is going to totally freak out my kids. I need to just take one phase at a time, not get ahead of myself, be where I am in the process, be thankful for what I have going on while I have it going on.

 [Ok, here is the funny part...before I posted this I googled "bald women" and found that there are actually a number of models that are going bald this year. Even more humorous is that grey hair was in with the young, trendy London set last year. I am SO ahead of the curve! Whoo hooo! Hoping that my head shape is more like Demi's than Brittany's]

Just some thoughts on a sunny day. Time to sit outside and watch my husband plant peas. And be thankful. For even as this is a journey, it's light compared to what I could be facing, as I am reminded every time I step into the hospital.

Friday, April 8, 2011


Woke up from surgery today with the good news that there was no lymph node complication. (does little dance of joy...)

I still have my lymph nodes (minus 3 from the biopsy) and I feel great. Kids are sleeping over at Anne and Harvey's (thank you!), ate delicious veggie lasagna (thanks Deb and Mark) and am going to get a good night's sleep. radiation (would have been daily for 6-8 weeks), reconstruction can happen with mastectomy if I want it,  and we can move forward. It's a good, good day.


Now I am going to bed. Love to you all.

Thursday, April 7, 2011


So tomorrow I head into the OR for a sentinel node biopsy which will help my physicians determine if the cancer has spread to the lymph nodes. If there is cancer, they will take out my lymph nodes. This is a big deal because the decision trees go wonky if there is cancer and having your lymph nodes removed is NOT fun.

So we will know tomorrow when I wake up what happened and where we are headed next. We also met with plastic surgery to go over options. Turns out I am too "skinny" (feel free to laugh here) to do the tram flap reconstruction from the abdomen, so my option is implants (yes, I know what you are thinking...I asked Nick what size he prefers) at UM or going somewhere else for other surgical options. Implants would be done at the same time as the mastectomy, literally waking up with a new set...possibly without stretchers and the whole shebang. That puts me back in play in 3 weeks, which sounds really good. I am, after all, turning 40 soon and plan to have fun on my birthday.

Depending on how things go tomorrow, we will be able to plan next steps pretty quickly. I am still considering a move down to Houston to MD Anderson, but weighing all of the travel, time away from my kids, etc. It's a lot to consider. The kids are doing ok, a little fragile and confused I think, but that is to be expected. They know what is up and we are telling them things as they are happening (Mom got a shot tonight that tells the doctors which lymph nodes to look at, lymph nodes help clean your body, tomorrow she'll go in for surgery so they can take a couple out and look at them...). If you see them, please give them big smiles and affirming hugs. They need to know that everything is going to be ok.

Other things in life are going really well so I feel like I have a balance of things to look forward to in the next few months. I have to say that throughout my married life I've always wondered if something like this would happen, how we would deal with it. I can honestly say that when I married, I married above my grade. Nick has been an amazing friend and partner through every moment of weirdness and confusion of the past few weeks. I can't imagine what this would be like without someone so smart, knowledgeable, calm and solid to keep things moving forward. My sisters and their spouses have been a machine of information gathering, cheerleading and love. You, my friends, have been magnificent. I feel warmed every day by the love and energy I feel from you. You never know the strength of the fabric of community until you have to tug on a string. Warp and woof, my community is strong. I love you all. Thank you.

More to come...

Catching People Up...

This is the first email I sent out to folks about being diagnosed. For most of you it's old news, but wanted there to be some info if people needed background...

Hi all,

I hate to be sending you news in an email, but it has been a week of texting people, calling, leaving messages, having long conversations and I feel like I have only kind of scratched the surface of all of the folks I want to share news with, so I am writing this in a note knowing that all of you that it's reaching know that you occupy a special place in my heart and friendship circle.

Last Monday I got the results back on a biopsy on a mass in my breast and the pathology came back positive for invasive ductal carcinoma. I know, ****, right? Invasive ductal carcinoma is the most common form of breast cancer and I feel like we're catching things early, so that's good. Nick and I spent the day today at UM Breast Care Center doing more imaging and consulting with a leading breast surgeon in order to determine the next steps. The good news is that there is no evidence that the cancer has spread to my lymph nodes, but there is one more procedure that they need to do before they can be sure of that. The bad news is that the head doctor is recommending that I have a double mastectomy given the type of cancer and my "young" age (fyi, only in cancer is 39 considered "young" any more...I'll take it where I can get it!). She said that if they do not remove all of both breasts the chance of the cancer reoccurring there would be fairly high, so that's where we are heading.
So the time-line right now looks like this. I will have a lymph node biopsy surgery and if there is no cancer in my lymph nodes then I will have the mastectomy and reconstruction surgery (all at once) about 2 weeks after that. Then I will have chemotherapy, and then be done.

If they do find cancer in the lymph nodes then they will do a lymph node removal surgery at the time of the biopsy surgery and then the double mastectomy (without reconstruction). Then I will have chemo and then radiation and then the reconstruction operation after all of that.
Even with all of this, I believe that I am going to get great treatment and be back in play in no time. Between my sweet family, new job and commitment to the Board of David and Ava's school, I have *way* too much good stuff going on to let this slow me down.

For now, Ava and David don't know that anything is up. I think we will work to bring them in as the treatment path unfolds but we'll discuss that when we know more. I'm a little anxious that their understanding of "cancer" is so deeply tied to my mother's death a year ago (next week...seriously, I couldn't make this stuff up) and don't want to scare them more than necessary. So please hold them in a little extra grace when you see/interact them. And same goes for my awesome husband too. He's a trooper, has more on his shoulders than any one person should carry and probably could use a night out for a beer.

I want to say in advance that I am sorry if I don't respond to emails or calls. I am trying to map out what I am doing with work and life at this point, but know that every bit of your love and support means the world to me. Every bit. The depth and strength of the ties that bind me to each of you is remarkable and each of you have touched my heart or the lives of my family in a special way. Thanks in advance for your great energy. While this isn't how I wanted to spend my the eve of my 40th birthday (again...seriously?!), it's the road I'm on and I am going to make the best of it.
If you live in the Ann Arbor area and have any info on the following, I would be really happy to hear it:
1) experience with breast reconstruction at UM or area docs that you would recommend/stories to tell or friends to talk to
2) a good, I mean good reiki practitioner
3) a massage therapist who has worked with breast cancer patients
I am also ok with people knowing, so if you know friends who don't know be confident in sharing the news.

Love to you all, sorry to dump this on you by email,

Update Central

Hi all,

I didn't want to keep sending out emails to a big list of folks
and figured if people wanted to check in on my health-related
stuff, they could sign up to get updates here. I'm not going to
fill out much stuff on this site other than use it as a way to
update folks on what is going on with my treatment, etc.

If you want to get updates, I think you can sign in and receive
an email if there is an update or come back using the link.

Thanks for all of the love and care...