Restarting

"Did it feel short, Mama, or did it feel long?" David looked up at me with his big brown eyes and I had to think for a minute about what he was asking.

"This chemo, D, or just in chemo in general?"

"The whole thing, Mama. Did it feel like it went on for a long time, or did it feel short?"

I had to think about it for a minute, because at that exact moment one of the longest, most grueling experiences of my lifetime actually felt short. I was over the line. It was over. I was done. What was there left of that experience but to leave it behind?

Even though I am only two days out from the last session, I'm already dealing with a myriad of complex thoughts about what it means to be out of treatment. I feel like I am seeing glimmers of my old self coming around, touching into the old me and seeing the possibilities of a life restored. Last night I stood washing dishes and listening to Nick play various tracks from Jimi Hendrix on the stereo while he and the kids discussed Hendrix's style. We had just spoken of going to Seattle to celebrate our 10th wedding anniversary in August and to show the kids the town. Suddenly I was awash in tears, feeling in my body the real me coming back to take that journey with my family and all the wonderful things it will entail.

I can feel what it will be like to be normal again and it's just so completely overwhelming.

But on the other side, I don't want to lose the significance of what I have been through, what people have helped me through, what women and men go through every day who live with cancer. Part of me wants to hold on, to remember how shitty it felt, to remind myself of what it took from me so that I make good choices about the way to live going forward. I don't think I can shut the door on this, nor do I want to, but I'm not sure what kind of space to give it in my life.

I wrote a post awhile back about this year being a pause in my life, the fermata, the time that the music stops for as long as needed. My wonderful friend Deb, herself a musician, shared this thought with me:

I like the idea of a fermata. There's a real beauty in that time when the note is held, or even better, when the rest is held. Everything is suspended, time stretches, you stop looking back at the last note, and start looking forward. You know that the tricky part about a fermata - at least in ensemble playing - is starting up again, since the group has temporarily abandoned meter. That is why first violinists get so good at the quick rhythmic inhalation that warns "we're going to start now!"

How do you start up again after something like chemo? I've been sitting with this idea for weeks now. I'm feeling around in it now. I'm letting myself build into it, tears and all. As they unplugged me from the chemo line for the last time, I wept. Not so much for joy, but just for the end of it all. My tears freaked the nurse out, but my friend Jenn was there crying along with me. I passed over the finish line neither on my knees, nor with arms raised in bold triumph, but rather with an appreciation that was humbling to the greatest degree.

Maybe you start with humility. Maybe you let yourself reflect. Maybe you don't push yourself back into the busy-ness of what life is about too quickly. Maybe you take time to heal and appreciate and rest. Maybe the starting back in comes slow, the rhythm restoring as if feels right, first violin be damned.

4, 3, 2, 1...

Four, three, two, one
Earth below us drifting, falling
Floating weightless, calling, calling home...

I'm trying not to jinx myself. Trying to stay healthy. Trying to stay focused because as of Friday, I have only four more treatments left.

This is huge. Huge. HUGE.

So, I'm not writing any more about it here, but this song has been zipping through my brain on a daily basis.

Love to you all.

Major Tom

Facing what comes

Health update: Round two chemo is done, port installed and we're checking how that's working. The hair is *gone*...beyond the buzz you saw earlier. Things are ok here health wise. Chemo sucks, but you knew that already. More to come on that front, just had a story in my head I wanted to tell today :)



Saturday afternoon I sat in my bathroom and looked at Nick and said "Well, let's do it." It was the first blood-thinner shot I was going to need to take at home and the assumption on both of our parts that my needle-phobic tendencies would keep me from being the administrator of the shot. I'd been really working myself up to this moment and decided "what the hell, I am going to try to do it myself"...and did. It actually didn't hurt at all and I am really just a big baby, but it was a leap for me to just own the thing that needed to be done, even though as I poised that needle above my belly I was scared as hell to do it.

It reminded me of an experience that I had with David a couple of years ago in Tang Soo Do class, one that I have seen a number of times since. The back story has grown a little foggy, but we were at a belt demo at our dojang and the various belts were going up to perform. David was the only student in his particular color class at that point and the instructor had overlooked putting him in the show, completely by accident.

He sat there, huge tears in his eyes, looking at me like "what do I do?" So I kept giving him the signal to hang out, be calm, not worry. The demo segment event ended, he got up and came over and asked me to take him outside where he proceeded to freak out. Master Fancher came out to see what was up and said "well, David, you'll just do a demo now" which for some reason took him into the atmosphere of "NOOOOOO!" sobbing, crying, freaking out. I left him with Master Fancher leaning over him giving him a really solid pep talk and telling him he needed to go do it, even if he was scared. So David came into the room, still sobbing, people were wondering what in the hell was going on and Master Fancher proceeded to tell the group what a great student David is, how he's really a Jedi in disguise and David heard none of it because he was still crying. Master Fancher looked over at him like "ok, dude, let's go" and David refused.

It was horrible.

Then, in a moment of total clarity, Master Fancher walked over, picked David up under his arms like a little kitten, and took him to the center of the floor.

He barked the command of "attention!" and David snapped to into ready stance.

And as Master Fancher called each of the moves, David executed like a total champion with precision, skill and technique unlike anything he'd ever done before. He came into himself in that moment in a way I had never seen...confident, driven, focused and brave. The crowd was on its feet cheering, moms in the crowd were tearing up.  I was completely blown away.

Driving to work today I replayed that scenario in my brain a hundred times, gathering strength from what that experience taught me about facing what comes, about pulling it together, about overcoming fear, about working through something that scares you and not only survive, but to thrive and excel. We are not our fears. We are not our insecurities. We have inner strength beyond our wildest dreams if we give ourselves to test it in the ring.


Just last night, that same special little boy and I wrapped up Harry Potter The Goblet of Fire which left us with a good final thought:  “As Hagrid had said, what would come, would come … and he would have to meet it when it did."

P.S. I wrote a little piece on my experience of taking Tang Soo Do with David for his school's parent blog: http://s-kparentblog.blogspot.com/2010/03/walking-step-behind.html

Se fue

Shortly after I posted the last post this morning I nearly went postal. My hair covered the keyboards, was all over my shirt, in my mouth...gross. I called Nick saying "Do you think the kids will freak if they come home to me bald?" His response was that it was going to happen sooner or later, so it might as well be today.

So I called my girlfriend Lisa who is good with these things and asked her to come over and shave my head. I think she needed a shot of tequila but she got through it fine. Actually, I showed her how it was falling out and she immediately was all "Um, we're so getting rid of that" type of business and started buzzing away. The only thing I had to worry about was her gathering up the hair and crafting some sort of hat for me.

It was short and painless and so for the rest of the day I've been getting used to it.  Here is the result...

I knew that had to get out of the house and into the public immediately or I would totally lose my nerve. What should I wear out? I grabbed my favorite scarf, one that my best girl Sharleen gave me on my wedding day and wrapped it around my head. It feels strange wearing a scarf, I mean, WHY? But I figured that 1) it's something I should try and 2) my newly shorn head would surely burn if I didn't. Then I set off to the one safe place I could go, Morgan & York (my favorite coffee shop) to test out the new look. It was fine. Friends were lovely. Nobody freaked out. Then, emboldened by the move, I drove to Whole Foods to really test the stare factor. A few glances, nothing too bad. Added some 50 protection spray sunscreen to my repertoire and decided to move on to the final test.

I met my friend Joanna downtown for a celebratory glass of champagne. A few hours outdoors in downtown Ann Arbor (under the shade and protected by the sunscreen) with nothing on. No hat, no scarf, just me and some red lipstick and my crazy big glasses. I am sure people thought "WTF?" but it was totally liberating. Not even little kids stared to much. Huzzah!

I'm not sure this is the look I am going to rock all the time, but it is nice to feel like I have options. And, my mother who was so neurotic about keeping our heads nice and round did me so right.

So, I stepped across the crevasse and onto solid ground. It's not necessarily the look I'd choose, but it's the look I have for now and I am going to do the best with it I can.

The Buzz

I am shedding like a Golden Retriever. The floor of our bathroom is a mess of grey and brown hair. It's on my clothes, it's in my eyes and on my face. When I shower I lose so much hair the water can't get it off my skin. The 14th day after chemo hit and, man!, they weren't kidding about the hair taking a hike! I am dying to shave it off but I am worried about trying to do it myself (god, can you imagine?). Besides that, Nick and the kids are in Oklahoma for the weekend and I think it would slightly freak David and Ava out if they came home to me with no hair.

I've been sitting a lot with this today and realizing that there is a rhythm to the readiness of getting things over when you are standing on the edge of a big change. Part of me is really ready to get the port put in and get on with the treatment, although I'm glad we are waiting and testing and trying to figure out why I got this blood clot. It's the same part of me that wants to shave the damn hair already. For as unprepared as I feel to face some of these things, the anticipation is worse. This applies to the reality that in a week I will be shooting myself in the belly every day with heparin, which for a needle-phobic person like myself is akin to, I don't know, putting one's hand in a rattle snake bag. So I sit between the anxiety that comes with anticipation and my mother's no-nonsense "get it over with" attitude, not knowing which way to swing sometimes.

This weekend I elected to stay in Ann Arbor by myself rather than get a last minute ticket back to Oklahoma for our annual 4th of July celebration with my family. I needed a little head space, needed to buy some new clothes, drop off my wig to get cut (still on the to-do list), find some hats and cotton scarves (half-way done, need help on that one!), and send things back to people (dishes, gifts, etc).

I also really needed to be able to sit and think for a bit, re-arrange my brain and heart and mindset around this chemo phase. Chemo is so less tangible than surgery or reconstruction. At my stage of cancer, it's not as obvious why you are doing it as you are treating something that *might* be there instead of something you can touch, feel and see. Watching friends and loved ones go through chemo (and, frankly, still die), I have only seen chemo as a barbaric thing that lays waste people's physical and mental being. I have to keep reminding myself that breast cancer is not lung cancer, that this step helps me be here longer, that my disease is not my mother's disease or Bruce's or Julie's or... This is a different treatment and I know that, but I can't seem to shake the sinister feeling that chemo gives me.

My friend Kim gave me some really good insight the other day that has really helped to shape my thinking today. She told me that I had to stop thinking of the chemo as a caustic, poisonous invasion of my body and instead think of it as healing nectar. Yes, nectar that makes you feel like shit, but a nectar to welcome in to do its work so that I can live a long and healthy life. That is a major adjustment in my thinking, honestly, but one that I know deep in my heart is important. I know in order to make this work I have to ask my body to welcome this substance, to take advantage of what is can eradicate, to allow its presence to do its job. While I think my body doesn't love the chemo, it hasn't reacted to it in all the worst ways (yet? please no.). So I am going to spend today getting in touch with that idea and visualizing how that matter of acceptance could work for me next Friday.

So the next post will be a picture of the shaved head. I've been reminiscing on my fascination with Sinead O'Connor and Grace Jones as a teen. Who knew I'd be mimicking them at 40? Forty and sporting a buzz cut. Call me GI Jane.

Ashen from the Inside

I wake up in the morning with a face that resembles the Laughing Buddha, except that I'm not laughing, just swollen and red from the steroids that have wrecked my sleep and made me edgy. I remember Mom looking like this too so I welcome the day with the sarcastic smile she used to give to say "this shit sucks" when we'd comment on the chemo.

Chemo fucking sucks.

Four days in and I can tell the difference already. The skin on my face has grown rough, I can feel the little hairs on my head starting to revolt. My breathing feels off and my scars hurt. I feel burnt from the inside out. I am in no way myself.

It's really hard not to despair right now, so newly on the edge of this phase, looking out 16 weeks and wondering how I am going to make it through this time. Maybe it will get easier (ha), maybe I am just going deep in this feeling right now, exploring it and making it my own before I put it aside and live through it. But I will say that I have never felt anything like this before in my life. And it's frightening.

But, as my friend Liz said tonight when I noted "chemo sucks ass" on my Facebook page: "Yes, it does. But then you are here. Healthy."

That's what I am trying to grasp on to tonight, the reality that I will come out of this healthy or somewhat like I was before this began. I hate my vanity, but I hate looking the way I look, feeling the changes in my body, feeling so hollow, ashen and carved out on the inside. I can't quite figure out how to pass the time, to mark the passage of this time, to check off the days and weeks coming up so that I can cling to it being over. I need something to physically manifest this experience to let me know where I am in the process. It just seems so long.

I guess there are things to look forward to...a wonderful sister in law getting married, a conference in San Francisco in October...little things that will mark the end time after this has come and gone. I need to set these markers up. I need to find the rock cairns along the way from women who have already traversed this path and can help me see the other side. I need to find the reason for the movement forward, every day.

Right now, I just feel like curling up and escaping for a few months.

Tonight I am off of the steroids for the first night, so here is to better sleep, a less puffy face in the morning, maybe a real Laughing Buddha to greet me as I walk out tomorrow. Here's to making it through. Here's to moving it forward.

Floating

I hold in font of my eyes an image of a leaf on the water. The clear water simultaneously reads brown from the silt below and blue from the skies above. The leaf floats gently, swirls a bit, catches the slow current and moves lazily by. It is sunny and warm in the shade covering the stream. It reminds me of camp summers riding in Colorado, our horses bending their heads for a cool drink while we sip from our canteens. Peaceful, beautiful, calm, centered.

My friend Joanna gave me the image of a leaf on the water when I was telling her of my anxiety about starting chemo tomorrow. "Be a leaf on a stream", she said, and that image came to my mind.

I started out this week in a panic, feeling as though I had put off studying for very important test. Three weeks became two weeks became WHAM! one week with no time to get my life organized before this phase came in. I was supposed to be set up for acupuncture and reiki and have my house cleaned and be meditating and sure as hell be feeling more comfortable and confident that I was at that particular moment. I was supposed to be ready, damn it. I was arrested with dread and fear and disappointment in myself for not preparing to face the chemo better.

But this week the kids went to see their Oklahoma aunties and uncles who welcomed them with open arms and lots of love and gave Nick and me the breathing room we really needed. Days of flexible time and no guilt around being home late from work and relaxed dinners with a man I really love took the anxiety and gave it a coconut butter rub down so that it couldn't stick its sticky claws in quite so deep. I feel somewhat relaxed, that leaf on the stream, just letting myself be.

The past two weeks have been full of interesting observations about my life, too. Things I have always known about myself, but things I think I am coming to understand. This experience has made me more authentic, I think, more willing to stick to things that I believe even though they may not be popular. It's made me more willing to risk at work and in my community life. It's made me realize that this is the shot I get and I need to do according to my true self. There aren't a lot of second chances to do this all over again.

It has also given me insight about something peculiar and telling about my personality that I only just realized yesterday in the car. I had my ipod on shuffle and was listening to a really wonderful mix of music. As the program would dip into the 2,150 songs available, I would find myself intrigued by a song, instantly nostalgic for the memory it evoked or simply enjoying what it had to offer. But shortly into it, my mind would wonder what song was next, effectively ruining the experience of the current song in anticipation of what was to come.

I am hard, hard, hard wired this way. It's not only the way my mind creates and visions new work and ideas, but also makes sense of the world. Anticipating the next song, much like anticipating the next phase, the next treatment, the next reality can be exhausting and allows the monkey mind to run rampant with the endless permutations and combinations that the world of medicine holds.

So tomorrow as they plug me into the machine and we begin the 16 week trip down this potholed path, I am going to keep with that image of the leaf in the stream, of the cool mountain air, the smell of horses and leather bridles, the feel of boots on my feet and nothing to consider but what lies just shortly ahead.

Wish me luck.

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) gmail.com (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!

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 this...how 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).