Monday, August 29, 2011

Jim Croce Would Have Written This Better In a Song

I looked at him quizzically as he dashed in, grabbed his jacket and bounded back outside. "Where are you going?" I called after him. "I'm going to go take a walk with your Mom!" he shouted back. Fear and delight mixed in my stomach, I watched as he jogged down the beach with a huge smile on his face and caught up with my mother who was walking in the other direction.

I'd only met him a few months before, a blind date set up by a mutual friend that neither of us thought would go anywhere. The night we met, it took about 3 minutes for me to be completely enchanted by him. He had a wonderful, open smile, an infectious laugh and an incredibly curious mind. We leaned our heads together in conversation, drank bourbons and scotches, talked until late in the night. As he opened the car door for me, I remember thinking "hmmm, this guy may be a keeper."

Ten years later, and many miles between, I look back on that girl and think "oh sister, you had no idea...no idea what an amazing gift you were getting."

When I play back those ten years, there are many points that stand out in my mind. I remember taking him to visit Dad and Hunter's grave and the gentle way he pulled aside the chairs from the marble floor slab bearing their names.  I remember listening to him give the Father's Day talk at our Unitarian church about what fatherhood meant to him, so articulately and with such depth that he brought tears to the eyes of the minister herself. I remember, so clearly, the strong hug and calm reassurances that came when my sisters called to say Mom had lost movement in half of her body, that they didn't know what was wrong but that something, most definitely, was awry. "We'll get through this, honey, go be with your mom and the girls. Everything will be ok. We'll make it work." as he sent me off for weeks at a time to be with my family, never complaining about the extra burden of taking on the kids or re-arranging his life to accommodate my absence.

And I remember, most vividly, making that call, crouched in a quiet room at work, to tell him that the test was positive. "What test?" he said for just a second, then hearing my voice crack, realizing what I was talking about. We had both been assured that it was nothing, certainly just a benign mass, leaving neither of us to believe the news when it all came rushing home.

Standing on the other side of the glass watching him run down that beach, I could never have forseen the amount of love, patience and friendship that that man would show me over these ten years. I would never have imagined the hills and valleys we have come through, nor the mountain we are climbing now. The arguments we've had and the difficulties we've faced as a couple seem minor now in contrast to what we've been able to move through together. Truly, times like these give you a great perspective on the measure of a man. 

I'm not foolish enough gamble on predictions of the future, but I know that no matter what happens, I will never be able to repay this good, solid, sweet man for his kindness and love during this time...never in a million years.

Nothing I write here can really do it all justice. So, I will just say I love you, Nick. And thank you.


I Jinxed Myself, You Know...

I wrote that post and, sure enough, got dinged again. Went in last Friday and my white count was lower than the week before. They put me on another round of Neupagin and I am trying not to totally freak out that this is a symptom of something greater. But, on that note, please keep me in your thoughts, prayers, practice, etc tomorrow as I am heading back in for another blood test to see if things are ticking upwards as they need to.

Love to you all.


Friday, August 19, 2011

Little Did They Know...

Years ago, my mother, Nick and I went to go see the film Shackleton's Adventure, the story Sir Ernest Shackleton's now-legendary 1914-1916 British Imperial Trans-Antarctic Expedition. It's an amazing film, narrated by Kevin Spacey who uses a VERY SERIOUS, British-ish voice that just tells you that SHIT IS GOING TO HAPPEN. And it does, brothers and sisters, yes it does. 




A bit of description from the internetz: After five months of journeying, 28 men became stranded as their ship became trapped in pack ice. After eight months of waiting through the Antarctic winter, by October, encroaching pack ice crushed the ship like an eggshell. Needless to say, the story gets worse from there...much worse. Spacey peppers his narration continuously with ominous lines like "little did they know, the worst was yet to come."

We walked out at the end of the film, each of us completely exhausted from watching the relentless hell these 28 men had to endure. Exhausted and amazed at their resilience.

Not to put going through chemo on the same level as enduring the Antartic in the dead of winter, but sitting in the dr.'s office on Tuesday, I felt Kevin Spacey's voice in my head, And little did they know, the worst  WAS  YET  TO COME.  (duh! duh! DUH!).


So this week, we celebrated the halfway done mark and were supposed to launch into treatment #5 and a switch to Taxol.  The last two treatments on AC have been pretty sucky from a feeling-the-effects perspective and so I am simultaneously happy to move on to a new drug and completely petrified of the side effects. Eyebrows and eyelashes? Gone.  Feeling in fingers and toes?...hmmm, well lots of folks get neuropathy and about 5% never regain sensation again. Fingernails? Probably going to get really ugly and maybe fall off. And how about the delivery of the drug? Well, about 10% have a pretty serious allergic reaction sitting in the chair.

I sat there thinking about the risks and the gambles. I sat there thinking "I only have four more of these left and then I am done". I sat there and thought that my vanity and love of the use of my hands means something to me. I sat there and thought about the worst being yet to come. And then I realized that the worst part is not having a choice. You are in it. It's done. You move forward. The other options (a 30% chance of getting breast cancer somewhere else in  your body = metastasized cancer) are not simply not palatable. 

So instead you go out for dinner and drinks with wonderful friends to celebrate the midpoint. You laugh and cry a little bit with these friends, you tell stories about what life was like before and after this happened and you realize that it's worth every single bit to get to stay around to be with such wonderful people.

Friends and loved ones lift you through these times. I have felt angry, I have felt sad and depressed and more than a little lost, but never once, not once, have I felt alone. And that is pure gold.


Today I went in for the infusion only to be told that my counts are too low and that I am going to need to delay for some yet-to-be-determined period of time (likely a week). The thought of delaying puts me in a really bad place (more time? I want to get this DONE) but the idea of having a somewhat-ok-feeling week with my husband (and no kids!) might be something that I really need.


Yes, the worst, in some ways, may be yet to come. I hope not, but I won't know until I get there. And, Shackleton's crew of 28 men? They all made it home, every one. Working together, they pulled each other through.  If they could manage, with your help, somehow I think I can too.








Saturday, August 6, 2011

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.

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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.

Friday, August 5, 2011

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.

video



video

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.