Seeking

0000rowboat on the sea

Rowboat On The Dark Sea (artist unknown)

Would you believe me, if I told you
I am a rudderless boat
adrift beneath the starry sky?

Sometimes gliding with apparent purpose,
then spiraling aimlessly in a gyre,
or caught in tangles of Sargassum

Motionless, while schools of fish
swim by as though with singular ambition–
I float alone, without direction.

 

Would you believe me if I told you
my hull was not built for such voyages–
too small, too fragile, too easily damaged,

Not meant for vast oceans or rogue waves
battered, creaking and straining,
green water pulsing through cracks

Bailing feverishly, waiting with dread,
certain the next wave will splinter me–
drowning seems inevitable, if not immediate.

 

Would you believe me if I told you
I am pushed by unseen currents,
and my course cannot be charted

Strong winds cast my hull west,
against the lee shore, pounding surf,
fog blurring the horizon, where sky meets sea,

Beating to windward slow and vexing
dogged effort with little headway–
wind and waves conspiring against me

 

Would you believe me, if I told you
that some are meant to wander
and I am never truly lost

When I lie on the rough wooden boards, caked with salt
and look up at the star-filled sky,
my heart knows the course I should be sailing.

For now I must be content to sail on through the night,
change my course with the shifting gale,
and see what the sunrise brings.

Advertisements

New chapter: Frontotemporal Dementia

My beloved mother-in-law, Shirley, was diagnosed with frontotemporal dementia (FTD), with primary progressive aphasia (PPA) in May 2016. This disease is put under the Alzheimer’s umbrella, but it is different from Alzheimer’s in important ways. For starters, her memory is still okay.

What people first notice about Shirley is that she is fun and energetic, but she also has difficulty speaking. Sometimes that means that she cannot string words together coherently; other times it means that she talks in a vague way, never finishing her sentences. It seems like she knows exactly what she’s talking about, but you can’t follow her. Other times she says the word clearly, but it’s the wrong word entirely. And sometimes, the words get garbled on the way out of her mouth.

Another piece of FTD that is less evident is lapses in logic, plus delusions and paranoia. This is really hard to understand. For years she would insist on crazy encounters with animals and other people, things that seemed really far-fetched, but she would insist they had happened and get angry if you questioned her or expressed doubt.

We are fortunate in the way her disease has unfolded over the past two years. First, Shirley has the support of several of her kids and their spouses—together, we are Team Shirley. We all have her best interests at heart, and we work together to do what is needed. After her diagnosis, her doctor advised her to get her affairs in order, and thankfully she followed through (within months, she denied that there was anything wrong with her). Andrew and I also convinced her to move to Raleigh, since she was living alone and far from family support.

Once she arrived here, in January 2017, things unraveled pretty quickly. We realized that she was incapable of living alone or in independent living. By the end of the year and after many harrowing events (stories for another time—or perhaps better left untold), we moved her into an Alzheimer’s/memory care facility. That was the best decision we made by far, although it felt devastating. She has the support she needs, and they focus on her needs in ways that we cannot. They have an amazing staff of caring people who treat their residents with dignity, kindness, and respect. We are exceedingly lucky to have them on our team.

Not much is known about FTD, and I make mistakes and learn new strategies every day. I foresee writing pieces periodically as our story unfolds. As I poured my heart into my journal, I realized that sharing these stories could educate people about FTD/PPA, while easing my heart through a long and sad goodbye.

I don’t pretend to have answers. I merely write about our experience. For fellow caregivers, I hope you see your own families reflected and relate to the full range of emotions and experiences associated with FTD/PPA. My first story is about taking Shirley shopping this week. It’s lighthearted, but I hope that you can see bits and pieces of her personality, the reality of FTD/PPA, and how much I love this sweet lady.

#####

On Sunday, I took Shirley out shopping for pants. This was nearly a 3-hour venture, and we only went to one store. My singular goal was to help her find pants—and I appreciated the chance to spend time with her this way. But, shopping with someone who has FTD is both hilarious and maddening—and requires patience that is not my strong suit. Part of me dreaded it. I have to remind myself to check my expectations at the door, and do my best to roll with anything.

Goodwill has always been her favorite store, and they have a broad selection of classic styles, more than a regular store. I can’t imagine taking her to the mall. I reached her by phone and told her I was on my way. She was in a good mood. “Great!” she said. I told her that I had to take Simon to camp first, so I would be there in an hour. But when I arrived, Lynn said that she had started looking for me as soon as I called.

I’m glad that we stopped by her room first to get her purse. Kathryn could easily reimburse me, but the last time we went shopping, Shirley’s mood darkened the longer we were there. Andrew and I were perplexed. Finally, she said she “couldn’t have anything.” I realized she was frustrated about not having her own money, which to her signifies freedom. Before we moved her, she carried large sums of cash and walked to the nearby shopping center. Bus schedules and scribbled notes about trains littered her apartment. We worried for her safety. Now she has a low-limit credit card and a small amount of cash that stays in the safe at her facility.

During the 20-minute ride to the store, she unbuckles her seat belt twice. Each time, I coach her through buckling it, pausing while she does each step, but the second time she can’t figure it out. She would work on it for a minute, then get distracted by her purse strap or the insistent seat belt warning. I finally gave up, and we hear the beeping every few minutes until we arrive at Goodwill.

Shirley walks through the door and her face lights up. “Wow,” she exclaims, gesturing enthusiastically at the neat, color-organized shirt rack, “it’s like a … like a …” her voice trails away as she searches for the word. “Yes,” I agree, catching her eye and nodding, “it’s a rainbow of color, isn’t it?” “Rainbow! Yes.”

We find the pants section, but she already has two white button-up shirts in hand. She doesn’t need shirts, but they make her happy. At first, I watch her, examining the pants at arm’s length, then fumbling as she tries to read the label. FTD with primary progressive aphasia affects ALL language—not just speech. She’s almost lost her ability to write, but she hangs onto reading—perhaps because she worked in the College of Charleston Library for all those years. I bring her books and she enjoys reading them.

“Tal- Talbots. That’s good.” She may have dementia, but she still recognizes quality.

She is making some strange choices, though. The hot pink pants don’t faze me, but I know she’ll struggle to put on skinny jeans. So I start going through the racks myself, pulling out pants with a classic style that I think might fit—and I’m totally guessing. Shirley hates pants that pinch at the waist, but she also hates elastic waist pants. I grab a dozen pairs of khaki pants, in different sizes and styles, and hope for the best. We head for the dressing room.

I bring some pants in for myself, too, even though I don’t need any. That way we are shopping together, instead of me taking her shopping. We laugh at the corduroy jeans I try on—I’m neither curvy nor skinny, as the label suggests, and they look awful.

She slips off her jeans and starts trying to negotiate the hangers. After a few minutes, I gently take them from her, and we soon have a good system going. I hand her the pants to try on, hang up the ones she’s already tried, and sort them into keepers and rejects.

She can put the pants on by herself, I’m happy to see. Last week when I visited, she gave me two shirts and said they “didn’t work.” Later, I noticed that both had hidden plackets. She could not find the buttons.

I hand her another pair. I’m hopeful, because the last pair was too small, and these are larger. She peers at the label, then shoves them back at me. “I don’t wear this number!” she snaps. I take a breath and shrug agreeably. “OK, let’s try this pair.” I move the spurned pants to the bottom of the pile, hoping that we can try them again in a few minutes. The next pair are the size she thinks she should wear, but they don’t fit. I sigh inwardly, remind myself this is the disease, and say nothing.

The pair after that look promising, but they have a hook closure. “These don’t work.” “Look, I can show you–these are easy.” “I don’t like them.” “OK.” No hooks. I pull out all the pants that have hooks and put them in the reject pile.

Shirley grabs the pants I tried on earlier. She likes corduroy. I remind her how tight they were on me, and we start laughing again. Then, I hand her a pair of soft brown corduroy pants. She frowns. “I already have these. I need them fixed.” In fact, she gave a similar pair to me last week. For some reason she had cut out pieces of the waistband, and I can’t repair them. I nod and hand her the next pair quickly so she doesn’t start rummaging through the pile she’s already tried.

“I like these. These work!” She is thrilled. They are white capris that she picked out. I would never choose white—not for myself, nor anyone—they are a magnet for coffee and tomato sauce. I hug her. “These are perfect for summer, and they will match everything. Good find!” She beams. I decide to try again with the pair she rejected earlier, which are the same size. “Hey, these look really nice—let’s try these next.” She slides them on and after a short pause, buttons the waist. “Yeah. Good!” I add them to the keepers.

She gets dressed and we head back to the racks for round two. Shirley stops in front of the khaki pants. I put my hand on her shoulder. “We’ve looked through these already. Let’s find some blue ones.” “OK.” She follows me to the next rack, then walks past me to the next one. “Mom, those are pants for little kids. I don’t think they will fit you!” She comes back, and we begin looking again.

This time I have a better idea of her size. I already know her favorite brands, because we started thrift shopping together when she invited me to stay with her while I was job searching in Charleston. It was the year after I graduated from college, and a year before Andrew and I were married. A few weeks turned into us living together for a year, because we got along so well and had become friends.

I’m not certain that she loves Talbots and Coldwater Creek for their styles, so much as for the fact that she can buy these expensive brands for $3.99. She has always loved a bargain. But, no hooks.

Suddenly I am aware that she is no longer standing next to me. I look down the rack but can’t see her. She is not at the next rack, either. I glance quickly toward the door to make sure she is not heading into the parking lot. Then, I turn around and see her back in the khaki section. She must really like khaki pants.

“Any luck?” I ask. “These,” she shows me. She tried them on earlier; they were too small. She has another pair, too, a pair of low-rise cargo crop pants for juniors with multiple zippers. As we walk to the dressing room, she fingers a pretty printed skirt on a nearby rack and frowns. “I can’t have this. There is nothing for me.”

This refrain leads to a well-worn pathway to argument every time; she wants to go home. There is no good response to this, I have learned, so I say nothing. “I can’t have anything here,” she repeats. I know that she wants to go home, and I also know that she cannot live there anymore. I squeeze her shoulder sympathetically and tell her only that I am listening. Unfortunately, it’s the only thing I can do.

We head back into the dressing room and I show her the “keepers,” hoping to redirect her. “Look Mom, you already have two great shirts and two pairs of pants! Let’s try this stack now. I found some great options.” She perks up; I’m relieved.

I watch her out of the corner of my eye as she undresses. Last time she slipped off her sneakers, leaving them tied, but this time she unties them. I notice that her shins are dry and flaky and make a mental note to bring lotion. I am happiest to notice that she has gained some weight. Three squares a day look good on her too-thin frame.

I manage to prevent her from trying on the too-small pants that she already tried, but let her put the keeper pants back on so we can admire them all over again.

“Wrong number!” she says again when I hand her some navy capri pants. “Oh, you know sizes can be all different. Let’s give them a try anyway.” “Well, okay.” I can see that they will be a perfect fit, and point out how nice the navy looks with the pale green shirt she is wearing. “Yes,” she agrees. I find a pair of jeans that look promising, and hope she doesn’t look at the label. “These are Lands End!” I tell her. They fit, too.

We have two shirts, two pairs of capris, one pair of jeans, and one pair of khakis. I show them to her again, one by one. “We did great!” I tell her. “Yes. Great!” she agrees, smiling. I notice that she can still tie her shoelaces when she gets dressed. Good sign—and we take every one we can get.

We take her finds to the checkout. Suddenly Shirley looks uncertain. “Do you have your purse?” I prompt her, seeing it on her shoulder. The clerk smiles warmly at us. Not long ago, people often did not notice her difficulties with speech. Now it’s more pronounced. She pulls out her wallet and looks relieved.

“Do you have your yellow card?” I can see it, right in front. She pulls it out and proudly hands it to the clerk. “Twenty-five dollars and 75 cents. Now that’s a real bargain, for all this!” the woman says, looking at Shirley and smiling. “Yes it is!” she responds.

At this moment, she is happy. So am I.

IMG_20170904_161547798 (1)

Shirley, me, Simon, and Stephen on Shirley’s birthday last September.

Snapshots of my Nana

It is Thanksgiving Eve, and my Nana’s birthday*.

My nana did not like to cook, but whenever I visited, she made chocolate milk in her blender to make it frothy, and she always had at least two kinds of ice cream, which we ate in the afternoon. It was wondrous to my child’s mind, the kind of spoiling that nanas do best.

My nana called me Steph, Dear, and Snoopy in equal measures, most of the years that I knew her. But her face would alight with recognition whenever she saw me, so it didn’t matter.

I thought my nana’s living room was scary. It was formal, dark, and Victorian. There was a large painting in a gold frame portraying the death of King Ferdinand. I could not understand why anyone would want something so dismal. There were ornate lamps with pointy crystals. I would stand at the edge of the room, in the kitchen, hold my breath, and run quickly over the Oriental rugs and past the marble coffee table and uncomfortable furniture to her sun porch, where she always sat working on craft projects.

My nana impatiently guided my small hands through craft projects I was not yet ready to do—my first embroidery at age 4, and an astoundingly detailed string art sailboat at age 6, with macaroni letters spelling out the name of our boat. I remember making a shadow box with a cliff we made from clay and rocks, a tiny lighthouse, and a tiny stairway down to the water with a tiny boat tied to a tiny dock. By then I might have been 8. We would start a project and when she ran out of patience, she’d finish it. My nana was not a teacher.

But my nana was an artist—a watercolor painter—and I wanted to be an artist like her. Her watercolor painting of the Sandy Hook lighthouse, where I grew up in New Jersey, hangs in my living room. I realized early on that I did not inherit her artistic talent (nor her love of Victorian decor). But when I was old enough, I’d help her make bows from curling-ribbon in large quantities for the Riverview hospital gift shop.

My nana had many friends through her women’s club and I remember their craft bazaars and charity craft projects. Two of my nana’s favorite friends were much younger and visited often. When I was little, my mom would tell me not to be upset when they came over. Mrs. Baumeister shouted because she was deaf, she’d explain, and Mrs. Serpico shouted because she was Italian, but they were never angry, just loud.

My nana did not like to cook, but she loved hosting parties. She had a swimming pool, and one of those small buildings called a cabana, with two changing rooms grown moldy over time, and scary spiders in the corners. She hosted a pool party for my 8th birthday, and decorated fancy cupcakes in pink, blue, and yellow. I wore a pastel rainbow bathing suit and had stripes of zinc oxide on my late-summer, sunburned face.

For many years, my nana drove a blue 71 Chevy Impala. The back seats were covered with a thick layer of dog hair, and the car was so wide that when we were buckled up, my brother and I could not touch each other. It also had electric windows. She drove to the A&P nearly every day, so I was surprised when I heard that she got lost driving home.

I loved being outside at my nana’s house. Her land went on forever. There were weeping willows next to the river, an old, boarded-up water tower, back woods with lily-of-the-valley in early spring, and a huge sycamore tree at the edge of the woods. She had two great copper beeches—I could climb one high enough to see over the roof of her house and all the way to the river. I could disappear for hours with her dog Snoopy–most of the time she didn’t notice we were out.

My nana had a green painted stoop on the side of her sprawling ranch house, and below it, soft yet prickly Bermuda grass. I loved jumping barefoot from the sun-warmed stoop onto the spongy turf. It was years before I wondered where that door went, the one at the top of the stoop. I peeked through the clouded glass, but all I could see were stacks of boxes and furniture inside.

Much later, I learned that it was a secret room inside her house. It was secret because the doorway was completely hidden by stacked boxes and furniture. Today we would call it hoarding, but to me, it was just Nana’s house. It was the visual, chaotic debris of a once-sharp mind.

I lost my nana long before she died, to Alzheimer’s disease. She didn’t like having her picture taken, so I have no photographs of her. Nevertheless, these snapshots are the Nana I knew, and I keep them in my heart.

000000000leaves

*Postscript: Today we moved my much loved mother-in-law, who has frontotemporal dementia, into memory care. I’m not yet ready to write about that journey, but I wrote this to honor my nana and hoping that my boys will have happy memories of their nana too.

Winning Chicago.

IMG_4137 (2).JPG

Team Down. Not Out! Ready to get started in Chicago.

The Chicago Marathon was more memorable than anything we could have dreamed! Our whole team really appreciated all the support, notes, and video cheers along the way. I was touched by how many of our friends and family followed us online during the day.

As I barely rolled into class on time Monday, a colleague who didn’t know our story asked me, “Did you win?” I said, “Hell yeah, we won!” [As I explained, with a little too much emotion, I’m sure he was sorry he asked.] Here are some of our team’s winning metrics:

Friday night, Ann was honored with the Heart of a Champion award from the American Cancer Society. Just wow. Such a surprise, and so well deserved.

IMG_3800

Standing ovation and not a dry eye in the house. Ann was stunned.

Saturday we learned that a few final donations put Down. Not Out! over $15,000 in fundraising for the American Cancer Society. Geri also raised $3500 for the Ronald McDonald House! Go team!

Sunday morning brought perfect weather and excitement to get started. We waited nearly 20 minutes to cross the starting line. 6 hours and 27 minutes later, the five of us crossed the finish line together.

713400_263062638_xlarge.jpg

Yeah!!! Finished!

Maybe most importantly, for others diagnosed with metastatic cancer, Ann showed that you don’t have to put your goals and dreams aside. Finishing the Chicago Marathon promised hope and inspiration to others.

22308904_10215017379287894_7811128645391653872_n

Heart of a champion. Go BIG or Go HOME! #LikeaBoss

We had an amazing run and walk through the streets of Chicago, told incompletely here with a few stories and photos.

  • The Sears Tower (now renamed, don’t ask me what, something with a W) was always in sight, seemingly always in a different direction.
  • Highlights of a big-city marathon like Chicago included the colorful neighborhoods, funny signs, and wacky people along the course.
IMG_4141.JPG

Like Elvis.

  • I found my running shoes after a momentary panic attack where I couldn’t find them, then calmed down and started considering just how bad it was going to be to run 26.2 miles in Doc Martens.
  • Geri discovered the magic of Fritos and candy during long-distance running. She, Rebecca, and I did a lot of silly dancing with the music along the course.
  • Our cheering section was unmatched! We saw Jeff, Grace, Rose, Frank, Marie, Bernadene, Emalee, and Megan all over the course with their awesome signs.
IMG_3854.JPG

Rock star support from family!

  • Reading messages of support sent before and throughout the race carried us along.
  • Ann kept pushing forward, doing run/walk intervals for over half the race, and never complaining even as the sun got hot. She looked for and celebrated moments of joy even during a very tough run.
  • We kept a similar pace as a woman whose husband was wearing a loud, watermelon-print shirt. We started calling him Watermelon Guy and he cheered us on too. He was a hoot!
IMG_4184

Watermelon guy kept hopping on his bike and riding ahead to the next cheering stop.

  • At a few points during the race, my emotions got the better of me, and I pulled my hat down and dropped behind to shed a few bittersweet tears.
  • Even when we were mostly walking, Rebecca encouraged us to run short intervals, which kept us on track for an official finish.
  • IMG_3837

    Too many names, and not even all of them.

    We carried so many family and friends in our hearts for 26.2 miles. ❤There are far too many names on this list! I hope that research done by the American Cancer Society will one day lead to a world without cancer.

I felt really confident about Ann’s pace, and it was probably more nerve-wracking for those tracking us from afar as we slowed during the race and our projected finish time crept closer to the “official” time cut-off, 6.5 hours. For better or worse, I thought we were fine until I looked at my watch and realized that we’d be a lot closer to the cut-off than I’d originally realized. Fortunately, it was close enough to the finish that I knew we’d make it. We crossed the line together with joy and relief.

As I told Andrew afterward, each of us is struck with a few instances of clarity in our lives, times when you know that you are exactly where you need to be, with exactly the right people, for exactly the right reasons. Yet I’d trade our entire memorable weekend in Chicago, gladly and without hesitation, for Ann not to have cancer. Since that isn’t possible, I felt lucky indeed to be in the best place I could be. On October 8th, 2017, I saw Ann win Chicago, achieve her goal, and bring hope to others with her indomitable spirit. I will remember it always!

IMG_3861

Best cheering section ever! They walked miles and miles.

IMG_4211 (2)

Down. Not Out!

 

One week til Chicago.

The miles are in the bank. We are T-9 days away from the Chicago Marathon, and I feel confident that our Down. Not Out! team will cross the finish line together. I’m so proud of Ann, and I’m excited that I will be with her to see this goal through.

I am looking forward to the adventure, and yet, part of me is dreading it.

I am relieved to have my Table Rock 50K behind me. I enjoyed it thoroughly, but I was nervous about potential injury. Table Rock is a wicked course—one I hadn’t run—and there’s nothing easy about 5700 ft of elevation gain on single-track trails. In fact, it was harder than I expected (but I loved it all).

A couple of weeks ago, friends asked if I was doing extra training in addition to my weekly training with Ann, plus joining her long runs whenever we were both in town. Sometimes Chicago training looked like powerful walk/run intervals; other days we needed to do more walking. Ann persevered. Marathon training with stage 4 cancer is tough. There is no manual or instruction book. She’s writing it.

I sure as hell was not doing extra training. I don’t have time, and I’m not that dedicated. I was undertrained for distance and terrain, but that’s happened before, and it turned out OK. Still, I fumbled over my response. “No, but it’s fine.” Well, of course, duh. “Look,” I said, trying again, “my priorities are clear.”

I knew they were missing the whole truth, but I didn’t try to explain. I was worried that I might burst into tears unexpectedly and make everyone uncomfortable. Still, I squirmed inside about the possible misunderstanding.

My priorities are clear. That is true enough. A mistaken assumption, however, might be that my only priority is to help Ann finish her marathon. I think even Ann worried about it some. However, that isn’t the case at all. First, Ann has had many, many friends support her training. Second, I needed these miles together. For me.

As we neared the longest runs of her training two weeks ago, Ann said one day, with weariness, “I can’t wait for this training to be over. It is really hard on my body.” Her honest words filled me with deep sadness.

We knew that she would need to hang up her running shoes, to protect her long-term health and have energy for other goals. I’ve worried about her training. I know she’s making a good decision, at the right time, and I admire Ann for making the call and doing it on her own terms. Living life large has always been her style.

But there will be weeks and months and years ahead where I would trade anything for that time spent running together. Time that is free of distraction, often in the company of other friends. No agenda, just time spent sharing what’s on our minds, laughing about our kids, making plans, and telling stories.

I will miss it terribly.

So today, we run together. To get Ann to the start—and the finish—of the Chicago marathon, and fulfill a longtime dream of hers. At the same time, I am filling my cup for the road ahead, one without my best friend running by my side.

My priorities are clear. I treasure every single day that we can lace up our running shoes together.

ann and steph crystal coast 2011

Crystal Coast Half Marathon, 2011. One of our worst races together (Ann had a fever and my IT band crapped out), but the girls’ weekend with friends more than made up for it.

2015 tour de cure

Tour de Cure 2015. This was an awesome challenge for us to tackle together, since neither of us is very comfortable on a road bike. One of my favorite pics, taken at the end of the second long, hot day of riding.

IMG_1702

Sunset Beach Half Marathon last spring with the Peeps. It takes a flock!

IMG_1906

Chicago Marathon training in July with some Peep support.

IMG_1436

Many adventures are still ahead. We don’t just run. We also camp, eat Krispy Kremes, and listen to bluegrass. Plus a whole lot of other stuff.

IMG_1727

Our husbands (and kids) never question our crazy adventures and are our rocks of support. We’re looking forward to celebrating 20 years of friendship in 2018.

Tuesday reflection

Tuesday after work. I am

camping with Stephen at Shinleaf,

on the Mountains-to-Sea Trail,

after he has spent much of his day

slowly moving himself and many

surprising (to him) pounds of gear from

Bayleaf Church Road, about

ten miles away. Tomorrow,

he will walk another thirteen to

Rolling View and await pickup

after I finish work. An experiment

in carrying everything you need and living simply.

He is tired and sore, but clearly pleased with

his accomplishment. Yet he’s puzzled to also

feel somewhat disappointed, and it

gnaws at him. I let him talk

but don’t say much, allowing him

space to think more and return later.

As for me–I sit outdoors at 8:45 pm

watching the waning sunlight,

an early bedtime whispering the

sweet promise of rest before the

sun rises on Wednesday. And I can

tell you that I feel content

with this ordinary

yet extraordinary

evening.

img_3309.jpg

Chicago Marathon-bound—and I need your help!

My best friend Ann helped me start running again, back when we were 20-something neighbors living on the bucolic Trusty Trail (nothing bad can happen on Trusty Trail—maybe we should have stayed). It was a great way to carve out time together. The upcoming Chicago Marathon will be Ann’s fifth marathon, my eighth. Although we ran our first half marathon together (2006?), we have never run a marathon together. Don’t think we haven’t tried!

I told her when she and Nancy ran the ING Marathon in DC in 2008, their first, that I’d never run that far (I’m still eating crow for that line). A year later (haha), I was at the starting line for my first of four Umstead Trail Marathons (I have yet to convince Ann how great this race is). Three weeks prior, she’d been diagnosed with breast cancer for the first time. I bought a pink shirt and ran the race with her on my mind. Even though she was feeling crappy, she came out to Umstead to see me finish. We hugged and vowed we’d run the next one together.

blue ridge marathon

Blue Ridge Marathon and Half Marathon, 2014.

Ann, Nancy and I threw our names into the hat for the NYC Marathon the following year—it was their second attempt at the lottery, my first. It never once occurred to me that I might get in and they might not. But, that’s what happened! I ran NYC in 2010 and Ann and Nancy finally had the chance to run NYC in 2013. Then I ran the Blue Ridge Marathon in 2014, while Ann—wisely—opted for the half marathon option after all the training she did for NYC the previous fall (we did, at least, run the first part of the race together).

Last year, only a few weeks before she was re-diagnosed, this time with metastatic breast cancer, Ann ran the Asheville Marathon—but it was only 2 weeks before another race I had planned, so I decided to pass.

Ann has chosen Chicago as her last marathon, and hell if I’m going to miss out this time!

I have the opportunity to earn a slot and contribute through fundraising for the American Cancer Society as part of Ann and Nancy’s DetermiNation team, down-not-out. I committed to raising $1500 by the end of September. I am happy to invest my time toward achieving this goal, because the number of people with metastatic cancer is growing, and we need better answers, better treatments, and better outcomes.

A recent analysis of people with metastatic cancer projects that 11% of the younger patients will survive beyond the 10 year mark—and that’s supposed to be good news. We need to do better.

I am wary of lotteries now (see NYC Marathon, above), but I would bet on Ann any day of the week to defy those odds and lead that group of survivors. Just this morning, she pulled out half mile splits at a sub-10 minute pace—despite the July humidity and the many side effects of what I call “invisible chemo” –because she’s still on chemo, but that’s not evident to most of the world.

She may be down, but she is not out! I want to run 26.2 miles with Ann and her team, and see her achieve her Chicago Marathon goal. To read more of my story, make a donation, or cheer us on, please visit my page. You can read more about Ann, her story, and my other teammates on our team page. I’ll see you in Chicago!

Warm wishes and many thanks,
Steph

IMG_1611 (2)

Sunset Beach Half Marathon in May with our Peep friends. You can see the humidity!