Then and Now

What I remember most is how long it took to type out, hunched over my mother's electric typewriter out in the barn-made-office where our oil company was housed. The song had nearly 68 lines and I was not first in class in typing. And it really made no sense as to why I'd picked this song over other that were his favorites, other than I could see my father singing it and doing a hilarious dance to its jaunty klezmer Broadway tune, as I typed the lines. 

My dad, big as life, funny, irreverent, was gone. Something in the words, in the practice of transcribing them, brought something concrete to the chaos. I handed the note to my mother, folded up, and asked her to put it in the coffin with him. As odd of a request as it was, I know she understood.

The strange things we are called and compelled to do is how we make sense of things, I've learned this in the nearly 28 years since that piece of paper was slipped into his blue ultrasuede jacket, as easily as his casket was slipped into the marble floor that day. Today I have my own "burn box," held on the shelf of my home, filled with the most select group of emails, letters, poems, writings that I want to take with me as I return to ash. Everything in my burn box holds the deepest meaning for me, each piece given to me by loves of my life in moments that will forever be etched on my heart. I want to ensure, for myself, that I can carry this love into my future lifetimes, not an immolated gift for the gods, but love that is deeply entwined with my very essence, encased in my forever, wherever that may be. 

A year ago, I posted the following poem to my Facebook page, no doubt touched by the funny synergy of Leonard Cohen's act. Today we bury a friend, she, herself like my father, far too young and vibrant to be gone. I'd ferry her off with champagne if I could, and a picture of her sweet boy and the man who has been her lifelong backstop, and the best memories, painstakingly typed, all of those who will be here today for them and for her. What we take with us matters, what others give us for the journey, this side and the next, makes the most of life.

Ghosts on the Road
-David Rivard

A bookkeeping man,
tho one sure to knock on wood,
and mostly light

at loose ends—my friend
who is superstitiously funny, & always
sarcastic—save once,

after I’d told him
about Simone’s first time
walking—a toddler,

almost alone, she’d
gripped her sweater, right hand
clutched

chest-high, reassured
then, she held on to herself
so, so took a few

quick steps—
oh, he said, you know what? Leonard
Cohen, when he was 13,

after his father’s
out-of-the-blue heart attack, he slit
one of the old man’s

ties, & slipped a
message into it, then buried it
in his backyard—

73 now, he can’t
recall what he wrote—(threadbare
heartfelt prayer perhaps,

or complaint)—
his first writing anyway.
The need to comfort

ourselves is always
strongest at the start,
they say—

do you think
that’s true? my friend asked.
I don’t, he said,

I think the need
gets stronger, he said, it
just gets stronger.

The Theory of Everything (on a rutted road)

*not sure if the above pic is of Oklahoma, but man it looks like it.

The dirt in our neck of Oklahoma is thick and orangerust colored, beautiful for growing wheat but hell on wheels when it rains more than the ground can absorb. I have felt this, firsthand more than a few times, but most notably when Hunter and I went out for a "drive" (a.k.a. my 14 year old boarding school self sneaking off to smoke) only to get stuck up to the running boards of my 1968 beetle. Elbow-deep in that clay-shale mud, dragging armfuls of sticky paste away from the wheels and laying down wheat hay for traction, we were able to get that little car out of the ruts and back up onto the middle drier ground so we could creep our way home.

The ruts in Oklahoma rainy season are no joke, deep and jagged, the earth peels away in thick sheets and tire tracks push so deep that you worry about damaging the undercarriage of your car. You have two choices: to be in the ruts, go slowly, grind out the undercarriage and risk getting stuck or to find a way to flip your car up onto a space where you straddle the middle ground with one wheel while bouncing along the warshboard (yep, warshboard) side on the edge of the road with the other. One requires you to risk long term damage and breakdown, the other requires you to attend to what you are doing with laser attention, as falling back down into the ruts could cause damage worse than originally expected.

I first thought of this analogy when I was talking to a friend about behavior change in long term relationships, how it's so hard to change things when what you know is the rutted road, especially when you aren't sure if the road is going to change or get better or if this is it, turtles all the way down. It also applies to conditions in life that have locked you into patterns and beliefs and ways of being. "I'll just wait until the kids are out of high school to engage with the life I want to live" or "It's good some of the time, so until it gets really bad, I don't want to change ...(my job, my relationship, my habits)."

And so you keep going and going and going until one day you realize where you are, stuck in this wounding condition, and you can no longer bear it--the noise of the scraping and the tension of your arms having to hold the wheel straight. In essence, what you are doing to your very soul to stay locked in the pattern that is ultimately not where you need to be.

So you look for those few-and-far-between patches where the rut weaves and jags so you can work your wheels up onto the higher ground. And that getting up on the higher ground is not only difficult, but also in itself exhausting and unstable and new and naked. The ruts are easier to navigate but a painful destruction of your tender unexposed side, the higher ground scarier but ultimately probably better for long-term sustainability--the reality is that you just. don't. know. The truth is that sometimes you are in it and you don't want to be, but getting out of the car and into the thick muck on foot is not an option, you just have to ride it until it's done, wherever that leaves you.

I sat across from my dear girl Lara the other night laying out this Theory of Everything (on a rutted road), each of us feeling it in our hearts for the painful relationships we've been through, realizing also that this is just part of the human condition of change in life overall, from losing our mothers to thinking about our best selves and those parts of ourselves still waiting to be born. And we are still learning, and choosing, all of us.

That's it, every day.

I sit here at my computer and 10 feet away he sits with his guitar across his knees, seated on a zigzagged ottoman that accentuates how much he's grown in the past few years. He's knees and elbows and huge brown eyes and a gorgeous smile. As we were leaving the orthodontist's office today, I kept telling him how weird it was when he turned 6, when he went into first grade, that first grade was the first shred of proof for me that he was going to grow into a young man. "And, today here we are, amore," I said over my shoulder with a smile. "Today and you are a middle schooler and we are on to braces." He smiled his gorgeous sweet smile and leaned forward and put his hand on my shoulder, which would have been his head if the distance of the seats had not been such.

This boy is a favorite teddy bear wrapped in an enigma. He's honest and disclosive in one minute, difficult to gauge the next. He prefers, almost any day, to recline right on top of you in the cold Fall wind. He hasn't figured out that that's uncool. He's just starting to sense what is uncool. I don't know when he's going to grow into that uncool thing and I alternately feel like I haven't done enough to middle school him up and thankful for the buying of time that his sweet nature has given us.

He converses easily with adults. He's building his own style of humor that he tries on with his sister, dad and me at every turn. He loves a turn of phrase or a double entendre. There is no bad fart joke. He cracks up when he talks about butts. To match that, I showed him Sir Mix-A-Lot's "Baby Got Back" and he spent most of the next day commenting on the fruit, and less on the back, or being a little "uhhhhhh, that was weird" regarding the ardent appreciation of the female form through Sir Mix-A-Lot's voluptious stylings. I think the giant buttcrack was perhaps the biggest hit. So it goes at this age, I've kept reminding myself. So it goes.

This is the kid that still likes me to tuck him in at bedtime, who is happiest when he can reach across and touch your hand. He is tactile and yummy and stinky and kind. When I found out I was having a boy, I thought "Good, I know nothing about what it's like to be a boy. I can see him for himself, in all of his dimensions, without clouding my

[Ok, so he just walked over as I was typing this, gave me an enormous, lingering hug]

without clouding my view with all of my own stuff." And that's it, every day. He's still a mystery to me in so many ways, such a beautiful thing to unwrap, like sitting waiting quietly for the birds to come out. They come and you get to see beautiful things, but sometimes it's just the stillness that brings them, the moment of breathing with whatever is there. Or, the time that those same creatures catch you unawares, explode into view, fill you with delight and catch your heart with laughter. That's what D is like. He's deep and sweet and hilarious.  He is golden. I love him so.

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.

What Comes Next

I have been thinking a lot about what comes next. Obsessing, a little. Five weeks left of treatment.

Five more times in the chair.

I keep envisioning that last day. What will it be like? Will I cry when it's over? Will I laugh or clap my hands or do a little dance? I don't think I can do any of those things as there are people far sicker than I sharing that space, sitting in their own chairs, clinging to hope and working through whatever musters them to be there. That would be rude, wouldn't it, to celebrate end of this leg of the journey when others have so much more to face? But I can't imagine how I will feel at the end of this very long run. When I think of it, tears spring to my eyes.

It will have been twenty four weeks that I will have been in chemotherapy treatment. Nearly six months of my life. Nearly a marathon. In some ways I feel like I am going to be the guy whose body shuts down on the last leg, cratering under the exhaustion and stress from the experience. In others, I feel like I will finish at the end with my chest out, arms held high. Who is to know until I get there. I'm not tempting the Fates again with too much advanced thinking.

But this leads me to the next thing (ah HA FATES). What comes next? How will I know if I have cancer again? I asked my nurse practitioner the other day and she said "well, we look for signs and symptoms." Signs and symptoms? That's all? We get to wait until things are far enough along that I really start to notice that something is up? What about tests? What about some sort of imaging? Wait and see? What the hell?

A few weeks ago, Ava and I were standing in a local bagel shop behind another woman and her daughter. This gal had the telltale bald head so I looked over at Ava and said "See, this lady has no hair just like mom!" The woman and I struck up a conversation and she asked "Is this your first time with breast cancer?" I must have looked a little shocked as I said "uh, my first" because she said, kind of softly, "oh, it's my second. I mean, I had a good ten years in between..." and her voice kind of trailed off. I looked from her beautiful daughter who must have been only 18 to my beautiful daughter who would only be 15 if I had ten years and my blood ran cold.

Ten years.

Being this close to the end also makes me realize that I don't know if I can go through this again. I know I will if I have to because I love my children and my husband and my people and don't want to leave them, but the thought of going through this again just is kind of beyond me.

I know it's hard for my friends who are surviving breast cancer to read this blog because it brings back too much stuff. I have an acquaintance on FB who is struggling through recurrence now. This is the part that I didn't want to think about. This is the part, near enough but far enough away, that scares me.

Ten years.

If I could be so lucky? Is that the way to be thinking about this?

Maybe it will mean I will live my life better, differently. Maybe I will make better choices with my time, think about the future in shorter chunks, not waste energy on situations and irritants that do nothing to fill my bucket. Maybe thinking in terms of ten years would be a blessing.

But ten years is not enough time to do the things I want to do with my life. I have plans, people. I have things to see, I have trips to take, I have communities to build, I have people to love, I have kids to marry off, I have grand babies to hold, I have a retirement home in Seattle to buy...I have plans.

So what comes next? What do you see for me?

Fermata

A fermata (also known as a hold, pause, colloquially a birdseye, or as a grand pause when placed on a note or a rest) is an element of musical notation indicating that the note should be sustained for longer than its note value would indicate. Exactly how much longer it is held is up to the discretion of the performer or conductor, but twice as long is not unusual.

In essence, the fermata steals time.

*************

I was really embarrassed when the tears sprang to my eyes. Everyone got quiet as I stared at the floor and tried to collect myself. I glanced up and looked over at Nick with pleading eyes and face mirrored a my sadness and concern, but wasn't budging either. Then heard my oncologist say "Don't blame him, blame me, I'm the one that's telling you that you can't go."

I was supposed to be heading to Chicago in a week for an overnight trip with my team from work. A wonderful two-day design brainstorm with a fantastic design firm. It was a crushing thought. This is why I do the work I do, these are the experiences that feed me and propel me forward in my learning. It was not only something that I was looking forward to, but also something that made me feel normal during this time of non-normal living.

My doctor had made a good point. I would be staying by myself...what if I spiked a fever in the middle of the night? What if I couldn't get in touch with my team mates or him? I wouldn't have any data to share as I showed up at a Chicagoland emergency room. And me, with a problem after every chemo to date was someone he didn't want far away. We were switching things up again, better to play it safe and stay put.

He was right, but it was maddening. I started this process hearing from friends whose relatives had gone through chemo unscathed, one of two weathering it so well that they didn't even tell people at work that they were undergoing treatment. My expectation was that I would just live my life the way it was with this little inconvenience happening on the side. I know it sounds ridiculous, but for those of you who know me well, you aren't surprised. I power through, damn it. And when I can't, it's a shock.

Letting go of that trip really cause me to think about what breast cancer has brought to my life. It's like someone has punched a huge pause button. On the rough side, it's the hold on the phone to an important conversation you want to get back to. On the good side, it's the fermata, holding of note for a time that you see fit, knowing you can move on to the next beautiful combination of notes when the time is ready.

It's taken me over five months to get to this place. Five months to finally realize that I need to let go of what I thought was going to happen and just be. To feel like a bug trapped in the amber sometimes. To end that last note (the days before I got my diagnosis) and just hold it until I can resume. It's stolen time,  yes, but stolen time that will give me time in the future.

The reality is I never believed I would have cancer at such a young age and I don't think I have ever come to terms with what it and it's treatment has and will mean in my life.

I think I am still in denial, to some degree, of how big this is and what it means.

Allowing that in would have made/may still make me insane. But, I am coming into an understanding of what I am in, right now.

But time is tricky. If you are like me (or the old me), you count the minutes, you look at the long haul, you make plans, you wait. In the fermata, you try to sit with the pause, you begin to realize that you can't fight what comes, you pay attention to what is around you. You are a hybrid being with one foot in the future (4 more to go! 5...6...7...8!) and you mind and body in the very real and addled present, forcing you to sit, very firmly, where you are.

It's been years since I have considered getting a tattoo, but I may have found the right one to remind me of this time. Just a small one, inside my wrist, to remind me of what I have learned here, how important it is to be, to rest, to hold that note for as long as I need to before moving on composing the music of my life. The gift of memory and mindfulness, movement and pause.

There are these days that are the days.

First the health update:  Chemo #3 went rather well for the most part. We switched up the Neulasta situation and moved to the 10-day shot sequence of Neupagin, which lessened the horrible heaviness in my chest. I had a couple of rough days in there, but deal-able. Shooting up Neupagin the parking lot of David's baseball game is something I won't forget too soon. That and the insert says "do not shoot into scar tissue or stretch marks." Um, on this belly? That gives us a lot less real estate, people. I'm just sayin'.

Today is the last AC and then on to the extremity-numbing Taxol (which scares the bejeezus out of me) for four more and then I am DONE. Want to know what I am going to do after? I am going to have a big, fabulous glass of good wine. I am going to eat an amazing meal. I am going to work out. I am going to go somewhere wonderful with my husband. I know I am only half way there, but I can see the light. I can. I just need to remember that it's there.

Now a story:

"No, No, I can do it myself" she says as she pushes off with one foot, wobbles a bit and then clicks into the rhythm of movement. I stand back and watch my sturdy, spirited 5 year old girl grasp and master the balance and physics of the bike. At my elbow, David says "Just one more run, Mom, how about it?" and we move his bike onto the grass and I run beside him, lightly grasping onto his shirt, as he slowly and methodically pedals in a wide circle. Ava likes the flatness of the pavement and working without a net between she and the skin-skinning bitumen. David's skill improved 1,000 fold when we moved onto the field. "It would be like falling during soccer", he says, "or not even that bad." No sooner he says that and he's sailing along, free of the fear that had brought tears to his eyes just an hour before.

I woke up yesterday morning with a head full of steam about teaching the kids to ride their bikes. Tomorrow was a chemo day, I was going to feel crappy next week, time was running out on our second goal (first goal = learning to swim, second goal = learning to ride a bike), SuperNanny Steph was there to help, it was only going to be 80 degrees... so I closed my computer at 5, rounded up the kidlins and Stephanie and off we went.

It must have been a pretty funny sight, me in my baldiness/do-rag, skirt and mary jane shoes running up and down the parking lot grasping onto the bike and shouting instructions. Sweating buckets and realizing about 30 minutes in that I hadn't taken off the horrible, weighty foobs which were adding to the slog. In fact, one guy stopped for quite a bit to watch. He had a huge smile on his face so I suspect he was going to offer a compliment, but who had the time to chat when there were kids to push.

Our dear friends, the Leos came over to find us too. Miriam and Andrew riding circles around David and Ava, luring them into their mini biker gang and shouting words of encouragement: "Think of something yummy like chocolate cake! Think of your friends! Think of good things! You can DO it!"  We ran and rode, sweated, screamed our excitement, gave big hugs, did happy dances, encouraged each other. If it weren't such a trip and hysterical to hear and see, I would have been a pool of tears for the gentle sweetness of it all. Delicious.

Standing there with my friend Anne and our kids, I realized it was the first day in so long that I just felt like a regular mom to my kids. Not a sick mom, not a mom who is too tired or busy or down to do something, not a mom with cancer. Just a mom, and a mom who loves being there for these milestones in life, who loves hugging her sweaty, wonderful chickens after they accomplish something they are so proud of.

And then it hit me that by the grace of the universe, an early diagnosis and mostly just plain luck,  I will be standing there for many more.

What luck, and luck it was that I caught this disease when I did.

And that nearly blew my mind.

You never know what will be handed to you. You never, never know.

So today, I am thankful for that little bit of time. The old normal in this temporary "new" normal. And I hope they will remember it too.