Friday, May 27, 2011

Into the Void

The past two days have been rough, really rough. In them I have learned a couple of things, the most important being that perspective is everything. I'd guess that people talk the biggest game about the upcoming bungie jump until they peer over the platform and nearly lose their load. I am here to tell you that a mastectomy covered in bandages is the equivalent of the bravado that happens on the ground. The bandages come off and your guts are in your throat. Facing things head on in this space rocks your world.

So all of these silly things have been floating through my mind for the past couple of days. I know it sounds really bizarre, but I feel like I am saying goodbye to a part of myself that has been incredibly important to me. "What?" people say, "they are only breasts! Who cares as long as your are healthy!" *

I care. Let me make it clear.

I do care. I care that I am healthy, but I also care that I have lost a part of my body that meant a lot to me. At the risk of sounding completely vain, before having children this was one of my, ahem, better attributes. I was known in college as the girl who had the Vogue model breasts. So, pardon me if I seem shallow, but I am bummed that they are gone. I am a woman through and through and I loved that aspect of my femininity. (side note: we all know that this was like 20 years and 100,000 miles ago...yes, the warranty had expired and they needed retreads...but let's not mar the story with the addition of unnecessary facts).

And I am really bummed that I had to explain to my kids that I don't have breasts anymore. That is a fucking hard thing to explain to child. How does a child work that around in his/her brain? And when I give my kids hugs now, their little heads strike hard muscle instead of the softness that they have known since the moment they were brought into this world. I remember snuggling up to my mom as a child, the softness, warmth and her smell enveloping me. I know this is important to my kids too. And I know they will deal, but it sucks for them too. So much suckitude.

And there are countless other things to be mad at. Things I can't begin to consider and things that I hope will normalize. I am trying not to hunch over. I am trying to look at myself in the mirror. I am trying not to feel like a freak. I have met a handful of women who have gone this route and have done it with incredible grace. They have found that middle ground and I am reaching out to them and learning from them. As I sit here one month out from the first surgery, it's like starting all over again but not feeling prepared. I had written off this branch of the decision tree, remember? It's not forever, but it's for 6 months which is a really. long. time.

I'm trying to find the humor. I'm trying to find the thing that sticks for me about this experience and is the gem I take from it. A friend told me that maybe it's my Amazon heritage come to fruition. I kind of like that idea. Or, this is the prism through which to see life for while (I could totally pass as a man...hmmm). Or I just play it off as well as I can with Aunt Pat's advice about always looking fabulous as long as you have red lipstick and a Hermes scarf. If you can't fix it, feature it, as Joanna always says. But push it away with humor or bring it in with anger, it's wounding in a way that I know I will survive, but that I need to honor.

*I also want to say that in the not-so-distant past I was very cavalier with a friend about this very subject. I have a couple of friends who are BRCA positive and have been grappling with whether or not to do elective bilateral mastectomy. In talking to them (before my own BC diagnosis), I think I was really preachy about preserving health, yada yada and all with the "they're just breasts" kind of talk that makes me cringe now. It's a BIG decision. One that I would make again, absolutely, but I wish I had been more sensitive then given what I know now.

Thursday, May 26, 2011


I have been fumbling around in my brain for nearly a week trying to write this post. It's a post on a topic that's so difficult and touchy for people to talk about that I am not sure it's going to come across the way I want to, but I want to write it so I am going to try.

Being sick or under the weather or recovering from something brings great things from the people around you. When catastrophic things happen, if you are lucky, people link arms and create a fortress around you, they surround you with love and bring you delicious food and make you laugh. They also tell you how they feel about you, what impact you make in their lives and in their world, how much they love, need and respect you. As a result, through all of the shit of illness and all that comes with it,  you glow.

But that glow is a funny glow. It's a timid glow. Sometimes it's a glow that questions whether it has the right to shine out. "Oh no, don't say that!" you find yourself saying to people with an embarrassed look on your face. Or "thank you (blush, stutter), I really don't..." If you are not good at receiving compliments or the attention of others, it's a bizarre and daunting experience of exposure to something that on one hand can be so thrilling, but on the other hand can be so hard to accept.

Why is it so hard for us to receive words of appreciation, compliments, loving thoughts, validations of our own self? I remember a friend telling me about an experience that she went through a number of years ago where two of her friends sat on either side of her and whispered, one after the other, beautiful and sweet compliments about her in her ears. She said it was almost torturous and that she sat there with tears streaming down her face while these beautiful words entered her brain, like her body was trying to physically reject what it was hearing. I could relate to this so well, especially at that time in my own life, as we were both in a space of doubt, difficulty and depression. In truth,we want others to see that special glow within us but are so hesitant to accept that other people see it and validate it themselves that it becomes something to reject instead of something to embrace.

So I'm writing this because my birthday felt a little bit like my friend's experience. I spent the night with people I love deeply, wonderful friends who spent the evening showering me with compliments, love and affection. It was humbling and it was torturous, it was inspiring and it was intense. It made me wonder, every day since, why I had such a tough time with the attention. When I compliment my son or daughter, I get a huge smile. When do we shut that off? When do we decide that the person must be lying or "just saying that to be nice" or want something or certainly must not know us very well if they are to have that opinion of us? When do we stop believing that we are worthy of the compliment? And when do we become unable to just say, with the biggest smile, "thank you, that means so much to me to hear you say that"? Because, in our heart of hearts, it does mean the world to us. And it should.

So I think we should all practice a little exposure therapy on each other. Try to offer 3 sincere compliments today to people who aren't expecting it. Do it again tomorrow to the same people and see what their reaction is. And perhaps the day after. And the day after that. Does it make them squirm? Does it start to lighten their mood? Do they give you a big smile in return? Consider it an experiment. Work at it with a researcher's eye. Ripple it out to see if it takes.

As luck would have it, I was writing this post when my wonderful friend Deb Fisch sent this amazing little film out on a parent's listserv that I am a part of. It validates everything that I have been feeling in ways that I think I could never convey as well. It's 16 minutes very much worth spending today.

Enjoy. And thanks.

Wednesday, May 25, 2011

Vamping It Up

So we have some things in the works here. Some fun, nutty, totally outrageous things. Some things you can participate in, if you are willing.

In celebration that Phase II: Reconstruction (now called Re/DeConstruction), we will be enjoying the gap between Phase II and Phase III: Chemo with a little art project.

We are going to button bomb this town (and any town that wants some) with humor, with sassiness, with naughtiness. In lieu of asking you all to shave your heads with me (because what girl that spends as much money as I have on hair and loves her hairdresser as much as I do would ask for something like that?), I am asking you to think of a creative button to make. It has to be something cool or funny or naughty. The point being that these are buttons that we will pass around to folks in the community in "baldidarity" with others who have gone through chemo. They don't have to say anything directly about cancer or chemo, but they can. I don't even care if people know what they are for...actually, that would be even cooler. I would love people to think "wow, what a cool button" and just wear it and then others that are in the know will see it and smile. Something that someone will find funny or cute or silly. Something joyful and that brings a smile.

It can be words or designs, but nothing about me. This is a project about taking the piss out of cancer, laughing about stuff that can be brutal, freeing ourselves to find the humor and fun in things that are a little dark. Some examples that have been floating around here? My favorite: "I have killer boobs". Another...simply a tassel, yes, that kind of tassel. Another that I like is "foobs" or, a true favorite "fipples". Another favorite: "I'm with Baldy". Feel free to make renditions of these too. :) Any play on chemo, cancer, boobs, no boobs, you name it.

If you have a creative idea, but can't execute it, send it to me and I will see if I can get one of my friends with mad design skillz to make it up. Remember, it doesn't have to be perfect. This is for fun.  We will cut and press these and send them out and pass them out all over. I hope to get pictures of random people wearing them. I hope that when someone says "awesome button" to a friend they will pass it on because that's the point.

So, I have uploaded the template for the button to a google doc that you should be able to access. Click here to see the template. Send me the completed template at fran.loosen (at) (replace the (at) with a @) and we will get it rolling on this end.

Again, if you don't feel like you can do the graphic design work, please send your ideas on to us and we will make it happen on this end. If we get responses, we'll post pics of all of the buttons on flickr so you all will see them.

I'm hoping that we can get these rolling and going soon. I start chemo in 3 weeks and would like to start passing them out by then (June 17th). Let me know if you have any questions! Love to you all!

Quick Update

Just a quick update to say that surgery went very, very well and that I feel great. The reality of my new look (concave, really) is going to take a lot of getting used to, but I am honestly so glad to have the drama and worry associated with the implant issue resolved and done that I feel like dancing (instead, I went out for a delicious BLT on a crazy rainy day with my friend Anne). I'm happy. This was the right move. I have lots of time to figure out what I want to do now.

Thank you again for all of the wonderful birthday wishes and reminders. This was a tremendously sweet birthday, one I will remember for the rest of my life. Brought to me by people like you who made all the difference. Mwah!

Monday, May 23, 2011

And, We're Back!

I'm back in my pleather chair, munching on biscotti and indulging myself in reading through service design and interaction design websites (related, but not immediate need in my job). Mixed emotions crowding my head that I have to keep beating back. One thing at a time, Fran, one thing at a time.

I head back in to surgery tomorrow to remove my reconstruction madness. I met with my plastic surgeon today (who has been gone for two weeks) and he took one look and said "they have to come out". The resident had prepped me with this idea about 3 minutes before, so I was prepared, but it was a blow.

A blow, and not a blow, actually. On one hand, I am bummed that I have spent time, effort, pain, worry and all dealing with this only to have it come to naught. On the other, Basta. Enough. Fuck it. I am done. I want to heal, I want my body to correct so I can get through chemo and then figure out what is next. It's weirdly hard and relieving at the same time.

I worried about this from the start because I know how my body is, I know what it likes and what it gets fussy about. Even though I am glad I tried this route for what it could have offered, I feel like I knew all along that this was a very real possibility. It's like my body and I have been two teenage boys grappling through a fight ever since this cancer diagnosis happened. It came up quickly, we have wrestled each other and thrown each other to the ground, beating each other up a bit. Now, sweaty and dirty and adrenaline running, it's time to let it go, to pick ourselves up, dust ourselves off and walk home in that silence that mends things after you've let it all come to a head. Sometimes things just have to work themselves out in this deep, physical way.

The funny thing is, all I could think of sitting there was "well, thankfully it happened this week instead of last". I had been petrified up until Saturday that I wasn't going to celebrate my 40th birthday with my family and friends. I had an amazing time, the best birthday I have ever had. I left this weekend full of love and support, which made this morning's news possible to handle.

So, tomorrow at 2:15p I go under the knife again. We are doing it at an outpatient surgery suite, hoping that I don't end up in the hospital again hooked up to an IV for another few days. I feel like I am draining all of the prayer/intention energy in the world, but please keep me in your thoughts.

Saturday, May 21, 2011

Reflections on My Mom at 40

She seemed so tall and beautiful, long dark hair and big brown eyes. We were at our home in Tucson, Arizona and my dad was all atwitter, but trying to keep it on the down low...we were having a surprise party for Mom! A party at Casa Molina, my mom's favorite restaurant. She knew something was up when we four got dressed without complaining and waited quietly to go to dinner. I wish I had a copy of the picture of my sisters, brother and I all dressed up. We were so excited, proud of our Mom, ready to eat the delicious cheese crisps that Casa Molina served (hey, we were kids, food mattered).

Casa Molina was packed with so many friends, many of whom who had come from out of town to celebrate with my mom. What a party it was! Drinks flowed (of course). Frank Borelli brought a rubber chicken to remind Mom of a trip they'd taken to the Dominican Republic. I can see cute Peggy Babby smiling. But mostly,  I remember her beaming, my beautiful Mom, so happy to be enveloped in friends and family, dark eyes shining and that wonderful laugh that could light up a room.

Today I am thinking of my Mom at 40, what a youthful and vibrant woman she was, even though she had four small children and a lot going on. My heart hurts a bit thinking of all that lies ahead for her in the near future and how she would suffer loss and sadness with grace and determination.  I am thinking of what an amazing rock she was during incredibly difficult times not only for our family, but also for anyone who had lost a husband or a child, needed advice, wanted to talk. I am thinking of her friends (her sister, her Tucson buddies, her sorority sisters, her neighborhood friends) who became a lifetime source of laughter and strength. But I am mostly thinking of her legacy, what an amazing woman and example she was to my sisters and myself.

Here's to you, Mom. We miss you terribly. Thanks for showing us the way.

Friday, May 20, 2011

Turning 40 Is Not the End of the World...(or is it?)

If you had told me a year ago that I would be sitting in a pleather recliner getting ready to update my blog about recent changes to my breast cancer report, I would have spewed wine out of my nose in derisive laughter. Moi? Noooo, no, no, no...not me, darling. The thinner, healthier, more sophisticated version of me would be picking up my last minute dry cleaning before hopping off to the spa for a little pick me up before the swanky fun party my husband had put together. 40 was going to be hot, the new 30 but better. 

Swanky fun party, check! (thanks, Nick!). Thinner, healthier, more sophisticated? That bit got derailed somewhere about November and got completely blown off the tracks come March.

And, yes, I am sitting in a pleather recliner (god, it's ugly) that has electric recline control, because that's just how I roll these days.

So I sit here the day before my 40th birthday in an incredibly reflective mood; missing everyone who is "gone" like crazy, musing that many people believe the world is ending tomorrow, looking out at the gorgeous sunshine and my husband working in the yard and wondering, in some ways, how did I get here? Here to this place in time, with these challenges but gifts in my life. Here to this town, where I have met such amazing friends. Here to this neighborhood where people ring the bell and drop off delicious things to eat, or stop to chat, or just give me a hug. As my mother in law said "Fran, in this place you sit on the front porch and people just bring you things." It's that kind of place.

I have to tell you a secret. It's actually not a real secret but its something worth bringing up right now. I hated Ann Arbor when we moved here. Hated it. I wanted nothing to do with it. We had moved from Seattle and I had lost my way. Three moves in three years, the most recent leaving behind a wonderful group of women I felt insanely bonded to. I was bitter. I wanted nothing to do with this place and for the better part of two years, I effectively shut myself down.

Those that know me well know that this is not normal for me. Being part of a community is what gives me life. I felt myself turning more inward than I ever had before. I think it was partly not wanting to be hurt again, to make friends only to leave them behind, and partly not wanting to have to go through the whole process of getting to know people. I mean, wouldn't life be easier to put all of those stories on a mixed tape that you could just hand to someone and say "listen to this and tell me if you want to hang". But life's not easy that way.

And here I sit, nearly 6 years from when we made that fateful decision to move to Michigan and start again. Six years of slowly getting to know people, to expanding out again, to letting people into my heart. At breakfast I bumped into 4 different groups of friends in the span of an hour. I spent lunch with my friend Myra who is full of kindness and love and who knows everyone in the world. My friend and neighbor Anne just popped over for a minute to say hi and spread a little sunshine my way. Tomorrow night I will get to see friends who I love deeply, who have been amazing support over the past few months/years, who make me feel good and whole and happy. This doesn't mean that I don't miss and long for what I have lost in the moves and the miles, it just makes me realize (really, remember, because I have always known this) that community is where you are. It's not the city or the town, but the people in that you gather to you and invest back in that make it a home.

I hope I can teach my own children that there are many places to love, many wonderful cities where they will connect deeply with people and be sad to leave. That there are always new friends to be made, new people whose lives you can touch, new experiences to be had with this gorgeous diverse world we live in. That part of the beauty of life is change, collecting stories and friends and bonds that will sustain you when things get rough. A community of friends is the flywheel that builds up energy so when the power shuts off, you can keep going.

So I sit on the brink of 40 and I am trying to take stock in what I want for the next decade.  I want to make a difference where I can, most deeply in the lives of people who I know. I want to do good work. I want to put my money where my mouth is and invest heavily in community through philanthropy. I want to help create good things in the world. I want to sit on porches and drink delicious wine and laugh with friends. I want to laugh a LOT. I want to spend time with my children and husband doing things that make us think and play and enjoy one another. Life is too damn short to be miserable or sad or unhappy or lonely.  I want to quit saying "I'm too busy" and reconsider my priorities. I want to make people in my life feel the same sort of love that I have felt from them. It's intoxicating like the finest jasmine.

I want nothing short of a life well-lived, so that if this cancer does come back I won't scream and gnash my teeth and cry "unfair!" There is no guarantee that you get anything in life...time, a break, good health, love, happiness...but the true injustice is when you don't use what you are privileged to receive well. And that's where I am going to sit for awhile.

Sunday, May 15, 2011

The Current Moves You Forward, But Not Under

I've been trying for the past two weeks to put into words how this part of the journey has been. Mostly I have written really nasty and angry posts that I haven't published but which feel *good* to get out. I've been trying to find a metaphor for what I have been feeling in the past two weeks.

[The Mack truck feeling post-surgery; the fear of being frail and vulnerable; the guilt of doing nothing while my husband does everything; the hatred of pain and discomfort; the worry with every little setback; the blinding anger at every little setback; the love of friends who bathe me in light; the delight and appreciation of gifts, food, cards, love; the conflicted feeling I have moving forward; the complete and utter upheaval that this experience as brought into my life that isn't clear to me now because I just can't parse the greatness of it all.]

I have a memory from many years ago when our family used to go ocean diving together. We'd be suited up, all strong swimmers and new to this cool sport. Diving is the most amazing experience in the world...down about 35 feet you are weightless, floating along perfectly buoyant, the only sound resonating is the in and out of your respiration and in front of your eyes colors and life like you'd never seen. But diving in for the splash was cold and weird, weighted down by a lead belt and struggling with the cumbersome wet suit and tank. The surface, which would seem so safe, was always choppy and scary with too much movement, your body thrust back and forth in ways difficult to manage for long periods of time. The closer to the surface you are, the warmer it is. But the closer to the surface you get, the easier it is to feel out of control, to choke and gag on the salt water when you take your regulator out of your mouth and try to break into the air.  Going down and coming up through that space was always scary for me, the current and movement of the water working against you, but knowing that you had to go through it to either experience the beauty below or get to the ultimate safety of the boat above. There was no escaping the in-between.

That is where I feel like I have been for the past two weeks/two months. If I could graph the ups and downs, it would be a pretty interesting ride.

+ Yay! Found lump early, smart GP sends me on to mamography
- Oooh, at core biopsy, dr. says "don't worry, I'm sure it's benign!"...except, it's not
- Oooh, not only not benign, but triple negative and grade 3 (fewer options)
- Oooh, sucks that mastectomy is treatment option, but +Yay! likelihood of reconstruction at same time.
+ Yay! (x10!)  no lymph node involvement (no serious dissection, no radiation!)
- Oooh, but that swelling under arm may mean no reconstructive surgery
+ Surgery and reconstruction
+ Yay! Clean margins at surgery! no cancer in other breast! Stage 1!
-Oooh, well, you still have to take chemo...sorry. 
- Oooh, that's a really itchy rash from the ceflex you thought you could take, sorry.
- Oooh, everyone in the house has the flu the day you get home from surgery? That's not good!
- Oooh, body doesn't like alloderm...ouch, that's a horrible skin reaction you've got there! Is the white count high? Will we need to admit to hospital? Will we need to take all of it out?
+ Yay! White count fine, escaped admit to the hospital! Things are looking better
-Oooh, wait. Is that your incision flaring up and splitting two weeks after surgery? Into the hospital for painful antibiotics!
+Yay! Reprieve from hospital after only 2 days (from the expected 5).
-Oooh, but the issue continues and is starting on the other side. What is wrong? Hmmm, nobody seems to know...

The up/down movement of what has happened over the past two months has been jarring. One one hand, I can't complain because it could have been SO MUCH WORSE. On the other, it's these little ups and downs that are wearing me out. It's the current that keeps moving me forward through choppy water, moving me forward but not dragging me under. Moving me forward when I am not quite ready or stable enough to draw up my knees, stick my regulator in my mouth and enjoy the ride. Instead I am spluttering and gagging on too much too soon, too many things at step forward, two steps back...too many little hiccups along the way. But then, in this scene in my mind, I rise up through those last few feet of murky choppy water to see a boat full of people that I love. Nick ready to give me a hand up the ladder, lifting the incredibly heavy tank so that I can scramble up the side when I have had enough. My friends ready with warm hugs, big smiles, delicious cinnamon rolls (seriously, gaining weight from the love), and words of encouragement. My sun-kissed kids eager to see me and have Mama back to her old self. And the women who have been in the water with me, we are forming a little bit of a chain to get each other back to the boat or down to the beauty below. We help stabilize each other on this choppy surface that cancer creates in our lives. It sucks, but the one thing I know more than anything is that I am not alone.

This week I go back to work, likely from home for more days because of the incision issue. On Monday, I go back to the plastic surgery folk to figure out if we keep my implants in or take them out. This week, I talk to my doctors about wanting to be healed from Phase II before I start Phase III, telling them I need a little time right now to make sure I am ready to move on. But instead of feeling triumphant in that decision and that need, I am fearful that the oncology team will say "no, we need to move, your stats will increase if you don't get on this now...this is your future you're talking about...let's roll".  This Saturday, I will celebrate my 40th birthday with friends and family that I love. Back and forth, back and forth, the choppy waters continue. I just need to remember to keep my lungs full, lean back and try to float through it all.

Monday, May 9, 2011

Running the Numbers

Today was a day of ups and downs, more ups BY FAR than downs so here is to celebrating good things.

This day marked the first day I felt like myself again. I cleaned up a few vases of dead flowers, I read a couple of contracts, I responded to work stuff a bit. My brain was actually processing information. I felt like I had come back from the brink of something chilly and damp and into the sunlight of what embodied life is.

I also got the last of my drains out today. I won't go into the drama of drains, but suffice it to say that your body doesn't absorb everything quickly and it needs some help. A few days into having Nick clean these things and I was about to hurl every time I looked at the receptacles. In a day or so, I'll be sleeping on my side again (huzzah! It's been ages) and won't have to sleep sitting up any more. And, the allergic reaction seems to be receding. Small things seem miraculous these days.

I also had the joy of going to a building committee meeting for David's (and soon to be Ava's) amazing, wonderful school to approve the purchase of a new school building, a dream I've been working on with a wonderful group of others for over 2 years. It's true that if you believe in something/work on something long enough, it just might happen. This is proof to me that a dream can come true. Pretty amazing stuff and something to look forward to.

Finally the best part of the day is that my genetic tests for BRCA 1 & 2 came back as "NO MUTATION". That doesn't mean that I don't have a genetic mutation, but it means that the ones they screen for (the scary ones that mean no ovaries, forced menopause, and a higher likelihood of colon and pancreatic cancer) are not mine. Ava will have to start getting mammograms at age 29 and my female relatives still need to do their cancer risk assessments, but this is good news. 

But the downside today was that we also met with medical oncology to start talking about chemo. Their opinion is that I need it. So riddle me after a double mastectomy, stage 1 diagnosis, clean margins, no lymph node involvement, *no* other evidence of cancer in the breast do I still end up with a 30% chance of having breast cancer in my body? And, even after chemo, that number drops to around 15%. There's no way to know if the little breast cancer seeds are anywhere else and the only hammer they have is a poison that might give me neuropathy in my hands and feet, possible heart failure, etc.  Nick is doing the research to make sure this is the right decision. It feels eminent, but I want to make sure I am making the right choice to take 4 months of pumping chemicals into my body. I don't want to make this an automatic "of course" decision. I also realize I am only turning 40, that I have many more years on this planet and dealing with breast cancer metastasized to my liver, bone or lungs is not something that will keep me on this Earth. It all feels like a really crappy odds game at this point, not to mention BEING BALD for my sister in law's wedding in October.

So, if we go with the chemo, it starts May 31st-ish. Still trying to work out how I am going to time it with work/other obligations that I love. But that's the next phase, so I am going to enjoy this week and next without giving it a lot of thought.

Some friends and I are cooking up a fun little guerrilla art project to make merrier the onset and duration of chemo...stay tuned (bwahahahhahahahaaaaa).

Friday, May 6, 2011

Reality post

I need to buck the hell up.

I've been sitting here for the past few days feeling sorry as shit for myself. My body aches, I've reached my 7-day limit on being sick, I've had allergies, I've been depressed as hell. Every morning Ava turns on the song Endless Night from the Lion King and I am awash in tears.

It's a slippery slope, this one. It's easy to creep around and be protective. It's close to the bone and frightening to feel so vulnerable. 

So I have started thinking of things that I can and can't control/do and do not know in order to bring some discipline to my mind.

Here are the things I don't know:
1) If I will ever feel normal in my own body again
2) If cancer will come back and if I will have to deal with this again in another form
3) How things will be days, weeks, months from now

Here are the things that I do know:
1) I have an amazing husband who somehow is powering through this time
2) My kids are the most sensitive, wonderful children I could ever hope for
3) I am lucky to count my sisters as my friends and my friends as life lines that keep me moving and laughing through otherwise deep waters
4) The sun does shine in Michigan

So, that's just today. Tomorrow may be different. Who knows what next week will be, or a month from now, or next year. But it's today. And the sun is shining. And I am going to put on some sunscreen and sit outside.

Note: I was going to go sit outside, until I realized that my over-zealous (although still amazing) gardner-husband has spread some sort of fish blood emulsion all over the front beds. So, instead I am going to read Tina Fey's book and look sit in the sunlight indoors...away from the hell smell.

Tuesday, May 3, 2011

These Uncomfortable Shoes

Brief update: Went to see the plastic surgeon yesterday for my checkup. Good news is that I got two drains out (now that was fun!). Bad news is he's concerned about the swelling and redness around my incisions (although the incisions look fine) so we took a quick blood test to see if I will need IV antibiotics (to the hospital with you, ma'am!) or not. Please direct all prayers, energy and otherwise good intentions to the healing of this redness. I'm really not up for the possible downward-casting decision tree on this leg of the trip.

And now, a story...

[note on this story: because of the foggy time line in my brain around my mother's illness, I don't remember if my mom was talking about my cousin Kim or my cousin Valerie in the scenario below. It could have been either because they are both amazing, amazing, amazing caretakers. So, Val, if it was you and not Kim that provoked this experience, you should get credit. Mom adored you too.]

"Well, Fran isn't a very natural nurse" my mom said to our table of friends as she took a drink of her water. "Not like her cousin Kim." The air crackled for a minute and the pasta turned to sawdust in my mouth. "What?" I turned and looked at her with incredulous eyes. "What exactly do you mean, Mother?"

Our dearest friend Gerry swooped in to save the situation "Susan, I am sure Fran is a wonderful caretaker! She's had two of her own kids and they are amazing. How could she not be?"

"She doesn't anticipate my needs the way that Kim does. Kim knows ahead of time that I need something, she pays attention to the little things. I'm not being critical of Fran, I'm just saying that it's not a natural strength of hers."

I stared at my plate, furious. How could she say that? What an impossibly hurtful thing to say! Hadn't I given up the past three weeks to care for her? Hadn't I quit my classes and moved to Houston to be with her through all of this? I remember my face burning red with embarrassment and anger, half horrified that my own mother would say such a thing, half horrified that she may have been telling the truth.

The reality is that nursing someone like my mom, and also nursing someone like me, is tough work. We are women who like to do things ourselves, have always been headstrong and independent and don't like to rely on anyone. My attitude with my mom's care in those first few weeks was "If she needs it, she'll ask for it." I mean, Mom seemed irritable and crabby when I'd try to help. I would do things wrong or the wrong way or not the best way. Given her way of living before cancer, I naturally thought she'd just let me know what she needed.

But now that I am on the other side of the sheet, I will tell you that it's an incredibly different story. People who have been through major surgery, whose bodies and hearts hurt want to be wrapped up in cotton wool, fed spoonfuls of nectar, bathed in golden light. They really want to be 12 month old babies whose parents allow them to do what they are able but whose caretakers have that freaky spidey 6th sense when something is going to go wrong or even just take the opportunity to make things wonderful. It is, in my mother's words, the essence of "anticipating need".  If you are a caretaker of someone who is normally a Viking, know you will have a lamb on your hands, even if they don't admit it. I didn't realize it then, but my "functional" care was not what she needed. She couldn't ask for it, I didn't know.

Last night I read with David cuddled up in my bed. Ah, the warmth of a snuggly little body and a good Harry Potter book. When he left, I sat there musing that I wish I had a huge, clean-smelling, warm Hagrid-size figure who could pick me up and cuddle me, bathe me in warm water and put me to bed fresh and happy every night. So good it would be to be that baby again, so wrapped in love! Our adult selves don't get that many opportunities to let go and feel the need for care in that way. It takes a major setback to bring it to our consciousness and then we work with all of our fiber to repress that need.

It's a pretty amazing experience to be on the other side of something like this. I mean, how many times has each of us done volunteer work with one (our own) mindset without being able to feel what it would be like to have to receive help? Or, just to walk in the shoes of another, slip on somebody's skin for awhile and know how their experience (need, desire, wish) might be? The world would be a different place if we had a machine that could expose us to what we don't or can't know. An empathy-adapting machine where in a moment you could know the truth of another's experience. For people with an open soul, it could change the world.

The end of the story with my mother is that my cousin Kim and cousin Valerie were amazing caretakers to my mom. I suspect my sisters were too, in the best way that daughters can be. For myself, the story came around again in the final three weeks of Mom's life when I came home to share a room with her (for awhile) and tend to her needs as her body was letting go. I had forgotten this part of the story, actually, until my sister reminded me about it. I think blocked it from my mind because it was both an intensely difficult time and one of the most deep and moving experiences with my mother that I have ever had. Things, as they do, come full circle.

[post script: I will say that during those three weeks, my mother told me at one point to "go sit on my thumb" because I was making her take her medicine." For those who knew my mom, I knew you were waiting for this oh-so-Susan punchline. Love ya.]