Grief and Baseball and Running

I woke up last Wednesday morning still sleepy and reached for my phone, looking forward to yet another sunny day at the Jersey shore. There was plenty of stress brewing back at work and my body was feeling ragged, but at least I was on vacation. I was away with my little guy and he was with his cousins. We had books to read, salty air to breathe, and the ocean to play in.

Before starting my day, as I do most mornings, I wandered between Twitter and Facebook to see what was new with friends and family and the world around me. What was new was grief. 

GRIEF PART ONE

First it was one random post. Then another. And then a flood. Until finally, it was the only thing in my timeline. Dave Rosser had died. Dave Rosser, who not only played guitar with The Twilight Singers and The Gutter Twins, but also with The Afghan Whigs. Dave Rosser, who was not only an insanely talented musician, but a remarkable human being. Dave Rosser, who was diagnosed with colon cancer in October.

With Dave Rosser before the October 5, 2012
show at Terminal 5 in NYC

Talk about ripping a bandage off an old wound. Our favorite music. That same pesky fucking disease. Even right down to them both playing the guitar. These moments don't happen anywhere near as often now - almost 6 years since Joe died - but when they do, it's a bitch. It was a day of not knowing what to do with myself. 

By that point in the week I was finishing up a book called Baseball Life Advice by Stacey May Fowles and starting a book called The Long Run by Catriona Menzies-Pike. If not for the insight from these two books this week I might have found myself today in a messy heap on my bedroom floor. More on the rest of the week in a bit.

BASEBALL LIFE ADVICE

Baseball Life Advice was one of those books that had me alternating between talking out loud to the author as if she's my BFF, crying behind my sunglasses, and trying to downplay my obnoxious guffaws. My reading of it seemed to be timed perfectly with what was unfolding in my life. So it goes sometimes in what I like to think of as these miracle moments because when I chose this book for my vacation reading I obviously had no idea what would be brewing.

It only took me the first chapter to know that Ms. Fowles is "my people". It's there where she explains her deep affection for baseball with prose that had me wiping away tears and carrying on whole conversations with the text. Except for a few details, I could have written many of the words myself and that was incredibly comforting.

In one section she writes, "Baseball became "my thing," and its stadiums my church, a place to pray in times of hopelessness, the source of a solace I couldn't find elsewhere. I never feel more human, or more sane, than I do inside a ballpark." 

And I thought, "Yes, yes, YES!" 

Baseball has been my medicine since Joe died. Going to games with my son. Going to games with friends. Being alone at games. There is both communion and medicine for me at the ballpark. The crack of the bat. The taste of a pretzel and a cold beer. The isolated cheers that grow to fill the stadium. A stolen base. The predictability of the 7th inning stretch. The crowd on its feet for that final strike. The deafening roar at a game-winning homer. Knowing that more often than not my Mets will break my heart and that will remind me of life too...because that is what's real. 

Ms. Fowles includes in her book a quote from Roger Angell's book The Summer Game which has stuck with me all week.

"This was a new recognition that perfection is admirable but a trifle inhuman, and that a stumbling kind of semi-success can be much more warming. Most of all, perhaps, these exultant yells for the Mets were also yells for ourselves, and came from a wry, half-understood recognition that there is more Met than Yankee in every one of us."

Truth be told, I've been feeling very "Met" recently. And not the 2015 postseason-bound Mets or the 1986 World Series Champion Mets or the 1969 Miracle Mets. I've been feeling a lot like the "now" Mets and it seems like every time I turn around there is a new thing in my way. This year the Mets seem to have injury upon injury and I just seem to be accumulating life stuff. 

I wasn't going to get to a ballpark until Saturday, but thankfully we filled in the gap with some baseball on the beach with the kids. It was my son's favorite part of vacation and for sure one of the most tender times for me to both watch and join. It was impossible to do without envisioning how Joe would have fit into the mix. I guess these things were on my little guy's mind too.

GRIEF PART TWO

It was two days after the news of Dave Rosser's death when he approached me on the beach looking sad. He cuddled right up to me and wanted to have his beach towel wrapped around him. Once he was comfortable I asked him what he was thinking and if he was ok. I don't think I'll ever forget what he said to me.

He told me that he wants to be a baby again. When I asked what he meant he said that he wants to stop his life where it is and start it over again because he misses his daddy. If the news of Dave Rosser's death was like ripping a bandage off an old wound, these words from my 6 year old were like that scene from Temple of Doom where the beating heart is ripped out of the guy's chest. I couldn't even catch my breath as I processed what it meant for him to think this deeply about his loss and how much he wants to have his dad here with him.

I do everything I can to surround him with love and help him grow, but I cannot give him his father back. I can grieve with him (which I did) and I can share stories with him (which I did), but there is this space in his life which Joe occupies that I just cannot fill for him. I am realizing more and more that he is on a grief journey too. He certainly will rely on many of the people around him to love and support him, but in the end it will be his journey.

RUNNING

There were many lovely things about Catriona Menzies-Pike book, not the least of which being that it kept encouraging me to run while I was reading it - encouragement which has not been easy to come by for me of late given some seemingly endless health challenges. The most important part to me though was a section at the end because it captured my own feelings towards running while also reminding me to be gentle with myself through all that life throws my way.

"I might not have become a champion, but I've become a runner, and somewhere along the way I stopped raging about what my life might have been like if that plane hadn't crashed. That's a life that I can now see has been plotted by surprises: including both an horrific airplane crash and the discovery of contentment in running. I've been fit enough to run marathons and, in between, I have slowed down and sped up again, delighted by my body's capacity for renewal. There are many limits to my progress as a runner: some of them lie within me, some are beyond my control. Instead of trying to master the contingencies, I just live with them."

If there is one thing that I have learned in my years of running since Joe died it's that so much running advice is also good life advice. So, perhaps for me right now life calls for a little less of trying to master the contingencies and a little more trying to live with them.

Last night, the little guy and I were back at the ballpark and for good measure I went in my Viva La Rosser shirt. It just felt right.

With my son at the Trenton Thunder game
July 4, 2017

(I encourage you to check out both books... Baseball Life Advice: Loving the Game That Saved Me by Stacey May Fowles and The Long Run: A Memoir of Loss and Life in Motion by Catriona Menzies-Pike)

Trainspotting Redux: Choose Life

Today my husband Joe would have turned 42.  Instead, it is the sixth time his birthday will pass without him here. Even six years later there is still a sharp tug each year when the month changes to April and I still have a cry when I wake up on the 4th unable to wish him a happy birthday. It's just one of those days where inevitably grief weighs in.

It also happens to be one of those days that has come with a life lesson for me.

In 2011, when he celebrated his 36th birthday I was in Bangor, Maine on an assignment for work. We had discussed it when I was first told about the trip, but since neither of us were in the habit of making a big deal out of our birthdays unless it was a "big year" we figured I might as well just go. I have no idea if he quietly hoped I would refuse the trip and stay, but my own mind was just not there. I was overwhelmed with my workload and a 6-month old and a husband undergoing chemo treatments. I wasn't thinking about life. I was just trying to do it.

Besides, he was doing well. If you looked at him at that time you wouldn't have even known he had cancer. We both thought he had plenty of birthdays left. But the thing I know now is that April 4, 2011 when things seemed to be going ok and when he seemed to still have plenty of birthdays ahead of him was exactly the moment that I should have made celebrating his a priority.

I knew it before I even returned home from that trip. Before his health started to decline that fall. Before he died in December. It's one of those moments that continues to define choices I make today and for that I am thankful.

It meant some incredibly special moments with Joe and Domani in the months that followed (and some other less important things that fell to the side). It has meant not only fun birthday celebrations with family and friends, but also the seizing of countless everyday moments. It has also meant learning how to say no to the things that would steal away the opportunities for those moments whenever it is necessary.

In our home we celebrated Joe's birthday today. I took off from work and went to watch T2: Trainspotting. Twenty one years ago this August Joe and I went to see the original Trainspotting on our first date. It seemed fitting to spend his birthday seeing what Renton, Sick Boy, Spud and Begbie are up to now. On the way home from the movie, I had a great visit with a friend from high school and finally got to meet his lovely wife. Visiting with them left me marveling again at the beautiful simplicity of mutual love and the truly meaningful aspects of the work I do - both valuable reminders to me right about now. 

When I picked up Domani, the two of us spent some time looking through old photo books and talking about his dad. Then, I bought Domani a small gift in honor of Joe's birthday and we met up with one of Joe's best friends for dinner at our favorite Mexican place. Our dinner plans were Domani's choice for Daddy's birthday. 

Being away for Joe's birthday in 2011 is a regret that I learned from and so I no longer regret it. My life has undoubtedly been richer because of the choices I've made since then.

I wish I could remember the whole new "choose life" monologue from the movie today. But this part certainly applies...

"Choose the ones you love.

Choose your future.

Choose life."

Getting ready to head in for dinner tonight.

Five Years

Five years ago the Giants had lost to the Packers in a Sunday Night Football game that they almost won. If not for leaving Aaron Rodgers with enough time on the clock to get into field goal range, Eli Manning might have led the Giants to a victory over the undefeated Packers. Instead, the last Giants game I watched with my husband was a narrow defeat, which then somehow paved the way to a miraculous Superbowl season. Joe died the morning after that loss to the Packers, right about this time 5 years ago.  It's startling to my spirit that it has been five years. As I said in another post, it passes like a flash and like molasses all at the same time. Who knows what this season has in store for our Giants given the way those Cowboys seem to be rolling along, but I will admit that quite a lot has changed in five years.

Five years ago, I was a different person. Spiritually, physically, and emotionally. It certainly began with Joe's diagnosis, but even more so after his death I have changed. The things that were important to me then are just not that important to me anymore. The ways I spent time then, I tend not to anymore.

More people. More travel. More health. More experiences. More life.

I run and I race. I go to Mets games and Giants games and Rangers games and Red Bulls games. I protest. I eat and I drink and I enjoy it. I do my best to say prayers with my son every night. I go to concerts.

I celebrate everything.

I choose time with family and friends over time at work. I try to learn something new every day. I make plans with friends. I organize get togethers.

It's not that I didn't do any of these things before, but the rhythm and drive now is just different.

I see this change in my friends and family too and for that I am thankful. Every time that someone tells me she is living her life differently because of Joe my heart leaps. I think to myself "we are breaking through"...."we can get to what matters"...."the world of our children will be different".

On the last day Joe was alive, he and I looked back through the photo album from our honeymoon. We had gone to Boston. We ate Boston Cream Pie every day and toured the history and ate and drank. We let our competitive edge run wild playing the Megatouch game at the bar around the corner from our hotel. Five years later, I can play Megatouch anytime I want in my basement thanks to Joe who bought me one for our first Christmas together. And, thanks to my own competitive edge, I can reach out and touch my Boston Marathon medal right from my bed. In my book, that has earned me all the Boston Cream Pie in the universe.

Five years ago, the Mets sucked. Even through the misery, we brought Domani to his first away game (in Washington, DC) and to his first home game at Citifield, but our boys finished the 2011 season 4th place in the Division with a 77-85 record. That's a far cry from the fun of last year when Domani got to live it up at Citifield during the postseason and even this year when we squeaked in to a Wildcard game despite a rash of injuries. Now, five years later, we are looking forward to a 2017 with Yoenis Cespedes on the roster for 4 years and plenty of young pitching to keep things going.

On the last day that Joe was alive, our son Domani gripped his hand and said "dada". At that time, Domani knew all of two words - dada and doggy. Five years later, he can read and write "daddy" along with dozens of other words. Oh, and he almost knows more Spanish than I do. Each day, I walk him to the school across the street from our house, just like Joe and I had planned out eight years ago when we decided this was the perfect home to buy. Domani is potty trained and opinionated, has already run his first 5k race, and knows how to sing, dance, and act. He is also one of the kindest and most compassionate kids I know.

Five years ago, Joe and I were watching Greg Dulli on a solo tour in Philly. We were at The Trocadero and it was the last concert we ever saw together. We sat in the balcony because he was not well enough to stand on the floor as was our custom. Right after Joe died from colon cancer, Greg's band The Afghan Whigs announced a reunion show which turned into a tour which turned into a new album. Now, five years later, the guitarist of this, our favorite band, has colon cancer and I'm about to head to New Orleans for a benefit show. Talk about FUCK cancer.

On the last day that Joe was alive, we were surrounded by friends and family. As much as things change, some things stay the same. Those same people are all still with Domani and me today. Joe's best friends have made a point of being my best friends and they love Domani with all they've got. Joe's family continue to take us in as a natural part of their family and for that I couldn't be more appreciative. There have been births and deaths, engagements and weddings, and our circle has had more than our share of health scares. It all makes me deeply grateful for such a strong core of support.

And I am even more thankful for the way it has grown over the last five years. There are so many more amazing people though who have been added to the mix since Joe died. I have made friends through grief and friends through work, friends through running and friends through the Afghan Whigs, friends through church and friends through the Mets. I have even been lucky enough to fall into a new relationship after five years of being out on my own.

Five years ago, Joe would have been the first to tell you that I wouldn't have even looked at an olive and certainly would never have eaten one. I could barely run two miles, let alone 26.2. I had no idea how to check our home oil tank, had never mowed the grass, and freaked out over killing any bug. Oh, how times have changed in the Deak household. Joe would be surprised. But somehow, I think he already knows. After all, I'm one that believes in signs and he just keeps leaving them all around.

From yesterday at the cemetery.
I listened to "Who Tells Your Story" from The Hamilton Mixtape
performed by The Roots (feat. Common and Ingrid Michaelson)
"Who lives....who dies....who holds on to all our lives....
Time and time and time again....will they tell your story in the end?
Who lives, who dies, who tells your story?"

If There Were No Love...

There are some things about this day that I remember as if they were happening right now in this moment. The sickening haze that settled in to that patient room as we listened to the unfamiliar doctor tell us that it was the end of the treatment road for Joe. The long drive home in our Kia Sorento - the last time I would drive anywhere with him. The phone calls and the family and the tears as we gathered.

It was a Wednesday. Just like today.

It's no wonder why the heaviness of this past week has felt that much heavier. Five years passes in a flash and like molasses all at the same time.

Today, I am simply thankful for the people who have supported me through it all and for these words from Zig Ziglar which have helped me through many difficult moments over the last five years...

"If there were no love, there'd be no grief."

Amen, Zig.

Heartbreaking News

CaringBridge Journal entry by Anne Luck-Deak — 11/30/2011

It is late and we are all quite tired in the Deak household. After a long night last night which included a visit from the hospice nurse, we went to Joe's oncologist today. Joe had been scheduled for his next chemo treatment, but given his weakened state it was hard to believe they would do it.

That proved correct but on top of that we were told by the doctor covering for Joe's regular oncologist that no further treatments would be possible. A punch in the gut. And she wasn't particularly helpful or sympathetic. Another punch in the gut.

While we were there Joe was given oxygen and some fluids. He also had a nice nap while receiving the fluids. Thankfully, after returning home we got a visit from his hospice nurse and later a call from his regular oncologist. His oncologist's heartbreaking conclusion was still the same but it was helpful to have our questions answered and to hear the details about his reasoning. The honest truth is that it was very difficult for Joe to travel to Basking Ridge today. His weakened state makes even a walk from the living room to the bedroom a difficult task, let alone walking around to get ready and then out to the car. It would just be too much for him to continue going through the motions of treatments which aren't really having an impact on the cancer.

We will receive some additional services from hospice and are still considering any other possible options for Joe. Please pray for wisdom in how to proceed and for peace during this seemingly impossible time.

As difficult as today was, it was nice to come home to a freshly cleaned house and some yummy food in the fridge. We have the most amazing support network and I have a suspicion it will only get better. Love to you all!

Anne Luck-Deak, Marathoner

In some ways I think the reality is still sinking in. I did it. I ran all 26.2 miles. I completed the journey during which I raised over $5,000 for the American Cancer Society and I crossed the finish line with a smile on my face and more joy in my heart than I could have ever imagined. Not only did I do it, but I enjoyed every minute of it and I've already set my next marathon goal. (More on that in some future post.)

As almost always happens when I race, I woke up before my alarm. In this case, that meant about 4:30am since the Team DetermiNation bus was scheduled to leave for the start area on Staten Island from just outside Central Park at 5:45am. It was a good thing we lucked out with an extra hour of sleep and that I had mostly adhered to my "lights out" time of 11pm the night before. I came back from our Team DetermiNation pasta party inspired, but with a terrible migraine, so I had been concerned about my ability to get any sleep before the race. Thankfully, I had gotten a good night's sleep on Friday (I'm told that's the key anyway) and I slept off my migraine for a good hour before my pre-race prep and my actual bedtime.

Inspiring view from our Team DetermiNation Pasta Party of the
 Empire State Building lit up for the Marathon

By the time my morning wake up rolled around, I was actually feeling pretty good and as ready as I was going to be for my 26.2 adventure.

I posted this photo on Facebook before leaving for the Marathon.

My friend Scott who had already been more than hospitable during my stay in NYC hopped into a cab with me to make sure I made it over to my Team DetermiNation bus without any problem. I arrived in plenty of time and was on my way to Staten Island by 6am.

Many thanks to Scott for playing host to me & my
parents for the weekend.

I was able to catch at least another half hour of shut eye on the bus and then it was through all the security measures to gain entrance to the start area at Fort Wadsworth. Everything was so organized and the race officials and volunteers were a proper measure of enthusiastic and serious. I couldn't believe I was actually there and I couldn't have been happier to finally find the Charity Village area!

In our Team DetermiNation tent we had hot coffee, shelter from the wind, and inspiration beyond measure. I was able to spend time hanging out with my friend Melissa and her husband Paul - fitting since Melissa is the reason I found myself at the start line that day. There was a beautiful banner in the tent which featured photos of many of our loved ones who motivated us to run with the Team - it included a photo of Joe, Domani and me from our trip to LBI in July 2011. Then, not long after Melissa and Paul had left to join their Wave, in walked Kate and Alena who I had trained with in NJ. It was so nice to see them and share hugs and take photos together in advance of our own starts.

With Melissa under the bridge after checking my bag

Posing with the "I'm Racing For..." banner in the Team DetermiNation Tent

I thought that the morning hours leading up to my start time would drag on, but the truth is that the time just flew by. Before I knew it, our coach Ramon was announcing that it was time for those of us in Wave 3 to make our way over to the start corrals.

With Kate, Alena, & Coach Ramon just before leaving for the Wave 3 Corral Start

We watched from just outside our corral as the first wave started across the bridge and it was spectacular. I alternated between watching the big screen that was set up in the start village and the bridge itself which was directly in front of me. I just couldn't believe I was actually there and that in less than an hour it would be me going across that same bridge starting my first marathon.

Watching Wave 1 cross the bridge from just outside our Corral

The next 45 minutes passed quickly as those of us in Wave 3 made our way into the start corral and maneuvered our way past all of those waiting for a last minute bathroom break. I was in the corral with Lindsey, another Team DetermiNation runner and I was so happy to be sharing the start experience with her. We ditched our outer clothing along with the other items which would go to Goodwill just before moving out of the corral up towards the bridge. Much of what happened next was a blur except for the moment when they started playing New York, New York and it seemed like the whole crowd started singing along. It was the first time along the marathon route that I got teary, but it wouldn't be the last. What a thrill it was crossing that start line after that send off!

The first two miles were exciting but so windy that I found myself wondering what NYRR would do if all of our bibs flew off our shirts at the same time and landed in the Hudson. I spent most of mile 3 dodging outerwear that had been thrown to the ground haphazardly and by mile 4 I finally felt like I was in a groove, attributed mostly to the great spectators in the Brooklyn neighborhoods. I found myself running towards the sides of the course, taking my time and high fiving anyone who offered - but especially all the kids. I was having a grand time and enjoying everything about running in NYC.

I was able to ride the crowd to keep a cool and steady pace through Brooklyn and into Queens, periodically relying on my random shuffle tunes to provide a little pick me up here and there. Then came that 59th Street Bridge. I had been warned about it. Several friends, including my Team DetermiNation coach, had explained it in detail. I had done all my hill training, but it was still tough. I tried to remember everything I had learned. I went to my race mantra - You + God = Enough - which was written on a rubberband around my wrist (thanks to a tip from my sister Naomi). But mostly, I just kept my eyes forward and thought of Joe.

Then, after what seemed like an eternity, I could tell that I was finally running downhill. As I could see the bend that would lead me off the bridge and into Manhattan, I heard the first few bars of Don't Stop Believin' come through my earbuds and there was just no stopping the tears. The timing could not have been more perfect for what that song meant to me and for that moment in the marathon. It wasn't just a good running song, it was my Joe calling at a critical moment and it played as I ran past the Team DetermiNation photographer and it continued as I waved at everyone cheering outside Memorial Sloan Kettering where Joe received care. It was one of those moments in life when everything moved in slow motion. I felt like I was the lead actress in my very own perfectly scripted movie. Running just doesn't get much better than that.

Not sure exactly where this is, but one of my
favorite photos from during the marathon.

About 20 blocks later at around mile 18 I came upon the first spot where my parents and Scott were waiting to cheer me on. All along the course, I had plenty of people cheering for me by name (thanks to my parents who helped iron my name on my shirt), but there was something really incredible about coming up on Mom & Dad and Scott yelling for me and seeing Mom with her neon sign that said "Go Anne". It was just the extra boost I needed to press on towards the Bronx.

Somewhere around mile 20 I got another much needed boost when I caught up with Melissa and Paul as they were running through the Bronx. It was so nice to see them and run beside them as I surpassed that 20 mile mark and ran what with each step became my longest run ever.

Once we re-entered Manhattan via the Madison Avenue Bridge I could feel the excitement welling up inside. Five miles to go and the crowds were awesome. I was starting to feel tired and I knew the difficult incline at Mile 23 was coming up. In my mind, I was counting down the streets until 91st where I knew I would once again see my parents and Scott. Somewhere along the way I walked through my first Gatorade stop, stretching out my legs a bit as I walked. Hearing spectators along 5th Avenue cheer for me by name kept me going throughout that very difficult Mile 23, but I knew that I would need an extra boost to finish strong.

As I approached 91st Street and spotted that familiar neon sign I made my way over to my mom and gave her a big hug. She was crying. I was crying. It was another one of those slow motion moments (and not only because I was exhausted!) I will remember hugging my mom during Mile 24 of my first marathon for the rest of my life and I'm sure that every time I think about it I will smile and tear up just a little.

The special Mile 24 hug

After  the hug, it was into Central Park I went for some beautiful scenery and, yes, a few more hills. I walked my way quickly through one more Gatorade station and then somewhere around Mile 25, it was random shuffle to the rescue again as I was treated to a little Pearl Jam. What better song to round out my first marathon than Alive - with just enough grit to push me out of Central Park and onto 59th Street where I ditched my earbuds in exchange for the cheers of what seemed like a neverending throng of spectators. That final stretch was fabulous and as I rounded the bend at Columbus Circle I felt every emotion in the book well up inside me. Five months of training and fundraising and the finish was right there. People were cheering. Big signs counted down every 100 yards for the final stretch. And then I was there. A finisher of my first marathon - the NYC marathon.

Crossing the finish line

In my mind, I had a goal of finishing the marathon in 4 hours and perhaps in even less than 4 hours. I didn't do that and I had a feeling from early on that I wouldn't. Perhaps if I were able to run with a 4 hour pace group (there were none available in my slower corral) I could have done it. Maybe if we all weren't dealing with the wind being so tough that day it could have been different. But really, what it came down to for me was that I wanted to enjoy every minute of my first full marathon. I joked with friends and family afterwards that if I hadn't spent 7 minutes and 25 seconds high fiving kids in the outer boroughs and hugging my mom at Mile 24 then I could have gone sub 4 and there is more than a grain of truth in my jest. Looking back though, I wouldn't have run this race any other way. I loved the energy. I loved the love. And I loved taking it a bit easy and soaking it all in. There was something truly wonderful about this race this year in this city. And I'm not ashamed that I cry every time I think about it. I got to run my first full marathon in memory of my husband Joe in a City that was special to both of us with a Team that was more supportive than I could have imagined and for a cause that is close to my heart. Nothing can top that for your first 26.2.

Thank you, New York City, and thank you to all of my friends, family and donors who have supported me on this journey. You were with me for every mile.

Showing off my bling

The NYC Marathon version of "Where's Waldo"...where's Anne?

Finisher!

My donation page for the American Cancer Society will remain open for the next few weeks so if you have not made a donation yet, but would like to there is still time. Thanks again for the overwhelming support you have given me - it has been inspirational beyond measure.

NYC Marathon Training Update - 25 Days & Counting

After more than 5 months of fundraising and 3 1/2 months of training, I am $211.40 away from my minimum fundraising goal for the American Cancer Society and 25 days away from running the NYC Marathon. It's been quite a ride.

I have run over 360 miles in training.

I have watched my time in 5k races go from a 28:16 before my marathon training started to a 23:29 in my most recent race. I knocked almost 20 minutes off my half marathon time from March to September. I have completed my first ever 20 mile run.

On Sunday, I will run my final race before the marathon - an 18 miler on LBI that starts at one end of the Island and ends at the other. If you told me this time last year that I would be doing an 18 mile race I would have looked at you like you had two heads, but here I am trying to figure out whether I will do it at a 9'10" minute pace or if I can pull off something under 9.

I will run LBI with my friend Melissa. It's the same day that our friend Malinda will be running the Chicago Marathon. With that kind of high mileage, it's almost a guarantee that at some point that day all three of us will be listening to an Afghan Whigs song and running, sort of fitting given that it was those two things that brought us together around this time last year. I'm so thankful for these two amazing ladies who have inspired me and laughed with me and cried with me again and again since we first met.

With Melissa (left) & Malinda (center) after we all PRed at the Rock N Roll
Philly Half Marathon, 9/15/13

And looking back over the last 5 months I have realized that the most wonderful part of this ride has really been all of the support I have received along the way. The encouragement I got from each "A donation has been received..." email. The pure pleasure of chatting with a friend on a training run. The acquaintance who will tolerate my running stories about the snakes I saw on the towpath or the blisters I have on my feet. The fact that people from every corner of my life have reached out in various ways to express their support and excitement for this upcoming race and my fundraising efforts. 

So far I have received 68 donations totaling $3,588.40. I know that Joe would be so proud of all that we as a community have accomplished together.

I'm running the NYC Marathon with Team DetermiNation in memory of Joe.
Here we are with Domani at LBI, July 2011

I have one day left to raise the remaining $211.40 and up until I run the marathon to hit my goal of $5,000 raised for ACS. Given the amazing support I have already received from friends, family, co-workers, and even strangers I have no doubt that it will all come together. Then, on November 3rd, I will bask in all the excitement that is the NYC Marathon as 4 months of training comes together across 5 boroughs and 26.2 miles. It's going to be fabulous and I would be thrilled to see you somewhere along the course. Thank you all for being a part of my journey.

To make a donation to the American Cancer Society through my NYC Marathon fundraising page visit http://bit.ly/19BmD17.

Technologically Advanced Grief

If Joe were still alive there would be no way that I would ever be allowed to write this post. He was much too shy and private for even this watered down version. But then again, if he were still alive there wouldn't be a need for me to write it.

Over the course of the past week, I have dealt with a facet of widowhood that I'm pretty sure was not a part of the paperwork just a generation ago. It started in March when I got the first notice from the Sperm & Embryo Bank of NJ that the annual storage fee on Joe's "account" was coming due. It's no small fee - $575 a year - to maintain the vials that were stored just prior to the start of his chemotherapy treatments.

Last year, when I got a similar notice 3 months after Joe died, I knew that it was too soon for me to make any decisions about what to do so I paid the storage fee and let it leave my mind.

This year's notice was perfectly timed to arrive just in time for my 35th birthday. It contained all the instructions I needed on how to transfer the account officially into my name (by this point they received notice Joe died) and the various options of continuing storage, donation, or destruction. It probably goes without saying that I wasn't very interested in dealing with "this" issue at "that" moment in my life. Between my birthday and my biological clock the emotions were just too overwhelming. 

So, to the bottom of my TO DO pile it went. 

Several subsequent notices always seemed to arrive when I was too busy at work or just too overwhelmed in general so they joined the initial one at the bottom of my TO DO pile. 

Before I knew it, the calendar was showing August and those nice people at SEBNJ finally decided I needed a kick in the pants. It was the "pay within 15 days or we are sending this to collections" notice that arrived a few days before my scheduled vacation time for work. I knew that I had run out of time and added "SEBNJ" to my already lengthy TO DO list for while I actually had some time off from work.

On Monday, August 5, I called SEBNJ and managed to hold it together through the 5 minute conversation with a nice woman named Sandy. She expressed her sympathy for my loss and explained to me what I needed to do in order to transfer the account officially into my name and then to officially give permission for them to destroy the vials if that was going to be my decision. She said that she would email me the instructions she had just given me along with all the necessary paperwork. After we hung up I cried.

Does anyone realize that this decision feels a little bit like your husband DYING AGAIN? There's this piece of him (that I happen to know helped create a pretty damn amazing kid not so long ago) that's still here. On earth. With me (sort of). And I'm completing a NOTICE OF DESTRUCTION for it?!

But then, I caught sight of a photo of Joe I have in the house and I pictured what he would have to say about all of this. While we didn't talk specifically about what would happen to these vials if he died, I knew my husband and the relationship we had. Every time I have contemplated this issue I have come to the same conclusion and have had the same visual of Joe laughing and saying "what are you crazy? Don't give them any more money. You have a life to live with Domani."

And so the next day, I faxed over the documents to change the account to my name. After a couple of days, I made the arrangements to have the Notice of Destruction notarized. It was Sunday and I'm quite sure that Domani had no idea what was going on when we went to visit our family friend after church. He was more talkative than normal and I was feeling peaceful after being caught by the hymn Trust and Obey during church. There was something about it that brought me calm in spite of my fears of the future. Many of those fears are wrapped up in my current relationship situation that has left me questioning whether I will actually find someone who is as interested in me as I am in him, whether I will find someone who wants to have kids, and whether any of that will happen with the timing that would make it all possible. That was what was weighing on my mind on Sunday just before I signed the Notice of Destruction and why these words especially got to me:

Not a shadow can rise, not a cloud in the skies, But His smile quickly drives it away;

Not a doubt nor a fear, not a sigh nor a tear, Can abide while we trust and obey.

Not a burden we bear, not a sorrow we share, But our toil He doth richly repay;

Not a grief nor a loss, not a frown nor a cross, But is blest if we trust and obey.

But we never can prove the delights of His love, Until all on the altar we lay;

For the favor He shows and the joy he bestows are for them who will trust and obey.

I thought of other dark periods in my life and what it felt like then to be unsure of the future and then I realized how richly I was blessed out of that darkness. There was no question in my mind that this was the right decision, but I needed the courage to do it in the midst of uncertainty about my own hopes and dreams for the future. 

On Monday, August 12, I sent the notarized Notice of Destruction to SEBNJ. That night I had a helpful conversation with Joe's mom which brought me even more peace about the decision. Today, Thursday, August 15, I received a letter from SEBNJ acknowledging its receipt and specifying my pro-rated balance due. After opening the notice, I cried at the finality of it. Domani was there to give me a sweet hug and kiss and to "make me smile" as only he can do. Thank God for that kid.

So, now as the clock ticks past midnight and the date changes to August 16, I'm thinking back to this day 5 years ago when Joe and I were married. There are more tears as this has been a hard week and getting through tomorrow won't be easy. But I'm also right now remembering the "conversation" I had with Joe and smiling just a bit about the fact that I'll be using the balance of the money I won't be paying to SEBNJ this year to take Domani on the road for a Mets game in September. I think Joe would approve.

One Mile at a Time - Running NYC with Team DetermiNation

Two weeks ago today, I had a text conversation with one of my BRFs (Best Running Friends) which went like this:

BRF: When your head feels better I'm going to try talking you into running the NYC full with us. So that's a thing that will happen.

Me: This fall?!?!

BRF: Shhhh. Your head hurts. this isn't really happening. It's a dream. Zzzzzzz. (Yes this fall.)

This past Saturday night, just before my body melted into my Washington, DC hotel bed with visions of the Nike Women's Half Marathon dancing around in my head, I signed up with Team DetermiNation to fundraise thousands of dollars for guaranteed entry into the NYC marathon. It still feels a little surreal, but I am confident the time is right. Running has brought me to an amazing point in my life and there is no more special place for me to run my first 26.2 than in NYC and no more special organization to benefit than ACS.

A favorite family photo - LBI vacation, July 2011
I plan to run the NYC Marathon in memory of Joe.

In November 2011, just before Joe passed away, my friend Christon ran the NYC Marathon in his honor as a part of the American Cancer Society DetermiNation team. At the time Joe was in and out of the hospital with care and treatments so having someone who was willing to put the time and effort into fundraising thousands of dollars and then running 26.2 miles with us on her mind was a huge emotional and spiritual boost. It really meant the world to us then and I will never forget it. So, when my friend Melissa asked me to join her and her husband Paul this year as they run NYC with Team DetermiNation, even in my migraine-induced state I knew it was an offer I couldn't refuse (yes, that was a shameless nod to The Godfather which Joe and I both loved).

Although Joe will never get to greet me at the finish line of a race, he is there with me every time I run. When I feel like giving up, I remember his determination in the fight and I think to myself - if Joe could get through that, then I can run one more mile. So, on November 3rd, that's what I'll do. I will run one more mile and one more mile and one more mile until I have run 26.2 of them. Won't you visit my page today and make a donation or pass along the link to someone else who can?

I couldn't be more thankful for the love and support I've received from family, friends, fellow runners, and even total strangers through Joe's illness and since his passing. Over the next six months, I know that I will see even more of that love and support poured out as I train and raise funds. Together we can make a difference in the fight against cancer, a fight for more birthdays and less cancer...one mile at a time!

Re-Living This Week Every Year

It was MLK Day 2010 and I found myself in our bathroom with an at home pregnancy test barely able to believe what I was seeing. I mean, really, we had JUST started trying. Apparently, you might as well just change my name to Fertile Myrtle. I just wasn't expecting it to happen so quickly and I knew Joe wasn't either. For about a minute I contemplated telling him in some cutesy way, but instead went right into the bedroom where he was and let him know that in about 9 months he was going to be a dad. His reaction was pretty much the same as mine. Not quite sure what to make of it all, we decided to go out for lunch. We went to a favorite spot of ours, Lisco's Country Cafe (which is now sadly closed) and didn't talk much about our big news. Had we known what the rest of the week had in store for us, I'm sure we would have appreciated the news for the miracle it was, but on that Monday, it was scary and big and we were second guessing whether we were really ready.

Fast forward to Wednesday morning. It was January 20th. I was out of the house early because we had a big meeting in Trenton and I had to be there to assist with signing in attendees. A month earlier I had left my position working at the Local and started working for the National Union. This was the first big meeting I had been a part of since joining the National Staff and I was trying to be as helpful as possible. My cell phone was in my purse which I left under a table because we were busy signing in and distributing materials to hundreds of attendees. After about an hour and a half or so I checked my phone. There were many missed calls from Joe. I listened to the first of the voicemails and it was enough to send me into a panic (this, by the way, is why I now always keep my cell phone with me). Thankfully, I was able to get him on the phone relatively quickly. He was in the ER. He needed the health insurance information since he had just been added to my plan and we didn't even have the insurance cards yet. They didn't know what was wrong with him, but anything serious enough for my husband to call an ambulance raised an immediate red flag for me.

The next 24 hours were a flurry of doctors and nurses, hospital rooms and waiting rooms, coffee and vending machine food, and very little sleep. After initially thinking in the ER that Joe was suffering from diverticulitis, by the end of Wednesday night he was recovering from emergency colon surgery and we had nothing to do but anxiously await the results of pathology tests. Some parts of that Wednesday are still as clear in my mind as if they had happened yesterday. I remember sitting in the hallway of the ER with Joe waiting for him to be admitted (unfortunately, this would not be our last time sitting in an ER hallway waiting for admission). I remember being in the hospital room with Joe just before he was wheeled off for his surgery. I remember lots of things about the waiting room while Joe was having his surgery - I ate dinner from Mexican Village there and we prayed with Eric, the Pastoral Assistant from my church who came by to be with us. I also spoke with my friend Karen who had lost her son to colon cancer just a few months before. Her son's diagnosis story was similar to what had happened with Joe and it was a blessing that she was available to talk to me while I was waiting for him to be done in surgery.

The next two days were rough. I spent one of the nights curled up in the chair in Joe's hospital room because I couldn't bear to sleep away from him. Since that resulted in me not actually sleeping, I didn't do it again, but the frustrating dance of trying to be there at just the right time to see the doctors when they came by was exhausting. Finally, at the end of the day on Friday, we got a visit from the doctor who did his surgery. She explained that Joe had colon cancer and that it had already spread to his lymph nodes and liver. The only other thing I clearly remember her saying (if you've seen the movie 50/50 it felt much like the scene where Joseph Gordon Levitt's character gets his diagnosis) was NOT to go searching online for survival rates because there are amazing things that are being done and Joe is young and strong. I searched anyway. Almost instantly I wished I had listened to her. The statistics for metastatic colon cancer are not good. So there we were -  five days into knowing we were pregnant with our first child and hours into knowing Joe had stage 4 colon cancer. I found myself thanking God that I was a Fertile Myrtle and telling Joe again and again that I needed him to recover from his surgery and be with me through the pregnancy and birth.

What was big and scary on Monday was a blessing beyond words by Friday. Funny how that can happen.

It all happened this week 3 years ago and the events of that week have completely changed my life.  I guess it's not surprising then that as Monday comes and then Wednesday and then Friday, I will notice. And in my own way I will re-live this week. And I will embrace this quote from Anne Lamott that I posted on my Facebook page that following Sunday:

"This is the most profound spiritual truth I know: that even when we're most sure that love can't conquer all, it seems to anyway. It goes down into the rat hole with us, and there it swells and comforts. It gives us second winds, third winds, hundredth winds."

I can't tell you how many times over the last 3 years I have felt like I was in the rattiest rat hole of them all. Every time and I mean every damn time there has been some thing or some person or some sign or some act of love that has swelled and comforted. It wasn't always instantaneous. It wasn't always obvious. It wasn't always what I would have chosen. But it always gave me another wind. 

So, if you are in need of that today, open yourself up to it. And if you are feeling led to do it for someone else, please don't delay.

An Ugly Christmas Sweater Party for SU2C

Tonight my sister Naomi and I teamed up to throw an Ugly Christmas Sweater Party to raise money for Stand Up to Cancer. The organization has been running a fun event throughout December where individuals could ask for sponsors and commit to wearing an ugly Christmas sweater every day or groups could hold a fundraising party with all the proceeds going to the fight against cancer. We decided that doing a party would be a fun way to get friends and family together while Naomi was back in NJ over the holidays and give cancer a swift kick in the pants at the same time.

My house tonight was full of family, friends, food, and some pretty ugly sweaters. We got a little rowdy playing the quiz game Buzz and tried to channel our best "Joe" performances on Rock Band. We had all been touched by cancer in some way and together we pitched in over $250. Not too shabby for our small but mighty crew.

The hardest part of the night for me was playing Rock Band. This was the first time I've had it out since Joe died and it was strange playing it without him. His steady way of playing that guitar or banging out the rhythms on the drum just couldn't be matched. And, as my sister Karen reminded us all tonight, the amazing thing about Joe was that he was just as good whether he was drunk or sober! It was a sweet, but difficult reminder of our loss, but an appropriate setting for such a reminder. 

After all, the whole point of our gathering is so that maybe someday families won't have this same pain of losing their loved ones to cancer. So, just as I have experienced at other points this year, I am sad, but also thankful for a way to "do something" with my grief. May the funds we raised go far in the fight against this disease that stole our Joe and too many others.

If you want, you can make a donation to our "party" through this link.

Decorating the Little Christmas Tree

The little Christmas tree 2012

This time last year we were dealing with the news that there was nothing else that could be done to fight Joe's cancer. It was heartbreaking news, as my blog post from that day was titled. As the calendar flipped to December today, I felt a range of emotions, most of which I was expecting. I just wasn't quite expecting the intensity. With the dreaded anniversary quickly approaching and Christmas and New Years following close behind, it was almost as if the December 1st date change were magic with the way that it pulled my heart in a million directions.

Today, I started my Christmas decorating. This afternoon my mom came over and helped me organize Domani's room and then bring the Christmas things down from the attic. Up until last year, Joe and I would always tag team this - he going up into the attic and I taking the boxes and bins from him at the bottom of the ladder. Last year for the first time our routine changed and I found myself poking my head in the attic along with my Dad. This year, I was up in the attic and my Mom was receiving the boxes and bins. Going in the attic is emotional for me now because it was Joe's job, so I'm especially thankful to have had the help.

Tonight I put up the little tree in our living room. It was Joe's from when he was a bachelor. His Mom had gotten it for him because she thought he should have a Christmas tree. She was right. It was the perfect "Joe" tree and every year I loved helping him decorate it. Last year, we put it up right after Thanksgiving and I'm glad we did. It was a comfort to me to have it there as Joe's condition worsened and I'm not sure I could have handled putting it up after he passed. We keep many of our most sentimental ornaments on that tree, including ones from our travels so the tree is a reminder of our many happy moments together.

Not surprisingly, I shed a few tears as I was trimming the tree tonight, especially with each "Joe & Anne" ornament I came across. I was surprised, though, at how sweet it was to also look at the tree and recall how it looked in his apartment in Cranbury the night we got engaged or to put up the Henry the VIII ornament and remember our amazing trip to London and the Gutter Twins concert that went with it. While there is still a lot of sad and lonely, I am starting to think about those amazing times when I think about Joe. I am starting to think first about our incredibly special love and second about how much I miss it. I guess that's progress.

My post from last year...

Heartbreaking News
Dec 1, 2011 12:34 AM

It is late and we are all quite tired in the Deak household. After a long night last night which included a visit from the hospice nurse, we went to Joe's oncologist today. Joe had been scheduled for his next chemo treatment, but given his weakened state it was hard to believe they would do it.

That proved correct but on top of that we were told by the doctor covering for Joe's regular oncologist that no further treatments would be possible. A punch in the gut. And she wasn't particularly helpful or sympathetic. Another punch in the gut.

While we were there Joe was given oxygen and some fluids. He also had a nice nap while receiving the fluids. Thankfully, after returning home

We got a visit from his hospice nurse and later a call from his regular oncologist. His oncologist's heartbreaking conclusion was still the same but it was helpful to have our questions answered and to hear the details about his reasoning. The honest truth is that it was very difficult for Joe to travel to Basking Ridge today. His weakened state makes even a walk from the living room to the bedroom a difficult task, let alone walking around to get ready and then out to the car. It would just be too much for him to continue going through the motions of treatments which aren't really having an impact on the cancer.

We will receive some additional services from hospice and are still considering any other possible options for Joe. Please pray for wisdom in how to proceed and for peace during this seemingly impossible time.

As difficult as today was, it was nice to come home to a freshly cleaned house and some yummy food in the fridge. We have the most amazing support network and I have a suspicion it will only get better. Love to you all!

Joe's Last Chemo Day

As a part of my grieving process over the past month and a half, I have been looking back over my CaringBridge blog posts from this time last year.  I have found it helpful to revisit the events that occurred and my perspective on them because it connects me with the special times the three of us shared as a family, the challenges we faced, and the friends and family who supported us through it all. In reflecting on those things, I've slowly been able to find within myself a thankful spirit. 

Being able to find some gratitude in the midst of grief has gotten me through some rough times recently. Hurricane Sandy being one. An increasing workload another. The inevitable stress of a single mom traveling with a 2 year old yet another. There are certainly moments when I encounter overwhelming grief for the losses in my life, but somehow in the next breath, I've been able to point to one, two, or twenty things I am thankful for in spite of that loss.

Looking back over my posts from November 15 and 16 of last year was hard. As I read, I realized that it was on November 15 that Joe underwent his last cycle of chemo. When we returned for his next cycle two weeks later, he was too weak to receive it. Reading that post in particular brought back a flurry of detail. I'm pretty sure that I still have in my wallet a Panera lunch receipt from this last chemo day. It is a reminder to me of our routine at MSKCC in Basking Ridge and how we were able to be together through most of his various treatments. On chemo days, once he was settled in and getting his infusion, I would sneak away for a short time to grab lunch, usually at the Panera up the road. He would almost always be asleep with his earphones on when I returned. I would find something to do on my iPad or check out Twitter or Facebook. It may not make sense, but I cherish those incredibly mundane memories now.

In reading back over my posts from last year, I found places of gratitude. I am thankful that Joe was supported throughout his illness by his company and his co-workers and that I was allotted time from my job to care for my ill husband. Too many workers in our country do not have that and I don't take it for granted. I am thankful that Joe was able to spend lots of time with Domani and that we had reliable care for him while we were at Joe's medical appointments. All three of us benefited greatly from that stability. And, today, with the holidays and the one year anniversary of his passing both fast approaching, I am most thankful that Thanksgiving week was an "off" week from chemo for him. It ended up being a special week for us and I'm glad we were able to go through it without any medical appointments.

I'm also thankful that I was keeping a blog this time last year. It is helpful beyond words now as I piece together memories of those final weeks with Joe and use those to build a new normal for Domani and me.

Here is my post from last year:
(As a side note, Joe did have the thoracentesis done the next day and it was successful in relieving some of his breathing difficulties.)

Chemo Day

Written Nov 15, 2011 11:51pm by Anne Luck-Deak

I started this morning crawling around on the floor looking for a dropped oxycodone pill so that Domani wouldn't eventually find it and ended the day accidentally deleting a message from Joe's new home care nurse because Domani was wrecking the bedroom. Geez, this cancer stuff is much more challenging with a 1 year old running around the place! Fear not, we tracked down the pain pill (under the radiator) and properly disposed of it so there will be no hopped up baby. We will also just follow up with Joe's oncologist again and ask that the woman from care agency give us a call again. All's well that ends well.

Our visit to MSKCC in Basking Ridge today went well. Joe's platelet levels were fine and enabled him to receive his next round of chemo without delay. His chemo includes a 48-hour pump so he will be receiving it through Thursday when he will disconnect at home.

While we were there, Joe also received some fluids because he was a bit dehydrated and some oxygen because he again has some fluid in his right lung. He is now scheduled for a thoracentesis at Overlook Hospital tomorrow at 10:00am. This is the same procedure he has had previously, but the one X-factor will be whether his blood is clotting well enough to prevent the need for a plasma infusion. If a plasma infusion is needed it may delay the procedure to the point that it might not be done tomorrow.

He does need the relief so we hope that all will go forward as planned tomorrow and they will be able to perform the drain on his lung. He has experienced a slight improvement in his appetite over the last several days so we hope that as his chemo treatments continue that will also continue.

The best news? Next week will be an "off" week from chemo so we will be free to enjoy the holiday and be thankful for the time with family.