Sunday, December 30, 2012

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.

Saturday, December 22, 2012

The One Year Illusion

I guess I thought there would be something magical about passing the one year mark. Somewhere in the back of my mind I envisioned arriving at a year and a day and all of a sudden feeling differently in my grief. I guess I just felt like something in me would "click" and I would comfortably move into the "next" phase of my life. Not so much.

Maybe it's the Christmas season. Maybe it's the overwhelming pace of my life right now. Maybe it's just my own way of moving through this loss, but it didn't happen even close to that way. In fact, in some ways, this has been my most intense period of sadness and anxiety since immediately after Joe died. Perhaps the worst part of it for me is that this intensity has worn me out to the point of not even being able to blog about it.

Last Saturday, I ran a 5k race in 28:17 for my best 5k time yet. But, there's no blog post about my Mistletoe 5k run because by the end of that day I was just too exhausted to write anything about it.

On Monday, I was able to join with my family to celebrate my Dad's 60th birthday. My sisters deserve so much credit for all they did to coordinate it from the shirts with the mysterious Latin phrase to the gifts that were given every 60 minutes. It was truly special and though I missed having Joe there, the togetherness did help lessen the sadness and anxiety that had become my December companion. I only wish I had the energy to blog about it more fully when it was over.

On Wednesday night, my sister and Mom came over to help me turn my house upside down looking for a checkbook I needed for my mortgage refinance. We were ready to give up without having found it when I decided to take a look in my old purses and old work bag in my closet. In one of my old purses I found the little notebook within which I used to keep my Christmas gift lists. I immediately became distracted looking at the things I had bought last year for Joe for Christmas and then by glancing at my list from the year before that. Tears came with it. My blog post from last Christmas will give you an idea as to why...


Written Dec 26, 2011 9:45am by Anne Luck-Deak
These last three weeks have flown by and dragged on at the same time. Domani and I have been surrounded by the love, protection and practical help of family and friends. We have seen an outpouring of support for Domani's education fund and have received expressions of sympathy from literally around the world. We have had meals dropped off and ordered for us (including a special something dropped off to us on Christmas Day). We have had some amazing people help with moving furniture, painting, cleaning, wrapping presents, and doing dishes - all in the midst of the Christmas season rush. It has been humbling to see the love poured on us in Joe's memory. I knew it before, but it is a continuous reminder of what an amazing guy we had in our lives.

Even with all of that love, yesterday was hard. For me, it was the hardest day since the one in January 2010 when Joe was first rushed to the hospital. Many people may not know this, but Joe was the best gift giver I've ever met (I understand that is not supposed to be "typical" for a guy.) He was thoughtful and creative and he always knew about the latest technology or could find the most obscure (yet perfect) gift. He knew his loved ones well and that made his carefully chosen (and usually ordered online) gifts perfect. 

Last year he wouldn't even tell me about the gifts he bought for Domani because he wanted them to be a surprise for me too. In addition to some Mets gear and a few educational toys, he got Domani a Curious George stuffed animal - because Curious George was Joe's favorite when he was little. Every time I look at that Curious George I think of Joe and his thoughtful love for Domani. And that makes me smile.

I missed exchanging gifts with Joe yesterday. Not because of the material things I would have received but because it was one of the many ways Joe would express his love. If you knew Joe, you know that he wasn't a much of a talker. But on Christmas he didn't have to be - he always found a way to speak his love through what he had chosen to give. Probably a good lesson for all of us and not just when it comes to material gifts.

In the midst of reminiscing about exchanging gifts with Joe I felt the urge to look in my old work bag and wouldn't you know it, there was the missing checkbook. It was almost as if Joe had led me right to it. Once again, during a normal month, I would have taken the time that night to write about it. But, no. Everything was just too exhausting.

I could probably name 20 more instances over the last 3 weeks where I've failed to capture events or realizations that were important to me. The lesson I have learned in the midst of it all is to be grace-ful towards myself. I can only do what I can do. As long as I am honest with myself emotionally and spiritually, do my best to tend to my physical well being, and make time to nurture the relationships in my life, I will come out ok. I have learned over the last few years deep lessons about what is important and what is not. Getting "over" my loss in one year is not important. Blogging a certain number of times is not important. And most certainly money and things and to do lists are not important. The important things in my life are people, moments, and those things we all do to build a better world. Those are the things I will cling tightly to this Christmas and that I know will keep me going even during the most difficult months.

Thursday, December 6, 2012

The One Year Anniversary in Eight Acts

I. Facebook Photos - Sometime just before I fell asleep last night I started looking through my photos on Facebook, commenting on some, liking others. I did it again when I had a free moment earlier tonight. It was cathartic to look back over the events, places, and people who had been a part of my life with Joe. It was also healing to watch throughout the day as others interacted with the photos. Here are a few of the photos that struck me and why:

NLDS - October 4, 2006
Mets v. Dodgers/Mets win 6-5
WP: Guillermo Mota (LOL), LP: Brad Penny
This is my favorite Mets game photo of us ever.
I love this moment from our wedding day because it was natural and took place in our backyard. 

How could I NOT love the photo of us in the Mets dugout?
And this is particularly special because I was pregnant with Domani.
Joe with Domani at the beach for the first time. I'm just glad that Joe and his
Mom and her husband Ross were able to share this 1st together.
Domani's first baseball game was a Patriots game with Joe and Joe's Dad.
Baseball was a favorite pastime of Joe's and I'm glad they shared that 1st together.
Excuse the quality of this one - it's a photo of a framed photo that hangs in my house.
I took it while Joe was in the hospital in January 2010 and
posted it to his Facebook page. It's special.
My all time favorite "party" picture of Joe. He's got his go-to beverage and,
of course, a water gun.

II. The Bank - This morning I took care of some of that day-to-day business stuff that I never seem to have the time or emotional resolve to finish. With some help from family, I was able to tackle the final tasks that remained at the bank. I do have a few things on what seems to be a never ending list that need to be done but at least I feel like I am continually making progress. 

III. Go On - I didn't get to watch this week's episode of Go On last night when it aired so I was happy to have a few moments before my massage appointment to watch it. It went perfectly with a cup of tea and my chocolate chip muffin from Mendoker's. Once again, there was something in this episode that hit me like a ton of bricks. At the beginning of the show, the conversation in their support group turns to the end of the world (of COURSE it does with the Mayans and everything) so Matthew Perry's character Ryan King ends up telling the story of legendary college basketball coach Jimmy Valvano and his speech from the 1993 Espys. He talks about the 3 things named by Jimmy V that make for the perfect day - laugh, think, cry - and then sets out to pursue them.

Here's a powerful excerpt from that 1993 speech:

"To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. Number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special."

To "laugh, think, cry" I'll also add "push" because my feeling is that we should all push ourselves beyond what we think we can do in one area of our lives every day. Think of the amazing things that can come from a life of those four things.

You can watch Jimmy Valvano's speech and read the transcript here.

IV. The Massage - One of the smartest plans I made for today was booking a massage with Nancy, my regular massage therapist. She is awesome. And today's massage was really something special. During the final half hour, I found myself in the strange place of having a conversation with Joe. I know how that may sound if you have never experienced anything like it so I won't even try to explain it. I can only say that for me it was very real and it still is real a full twelve hours after it happened. The conversation went like this:

Joe: I didn't want to leave you, babe, but my body was ready.
Me: I know. It's ok.
Joe: I knew you'd be ok.
Me: We miss you, but we are.

It doesn't sound like much even now as I am typing it out, but that was it and for me it was profound. It brought lots of tears, a runny nose, and an overwhelming sense of love and peace. It was what I needed and I'm glad I opened myself up to it.

V. The Cemetery - This was probably the hardest part of the day for me. Joe's Dad happened to be there at the same time I went and I felt the tears welling up as soon as I turned the corner towards where Joe's crypt is located within the mausoleum. It was comforting to have someone else there to share in my sadness and I have to think that Joe would have wanted to see his family comforting each other through this grief we are all feeling. Even though it was hard, I'm glad I went to the cemetery today. For me, it has been a place to sit with my grief and, while sometimes painful, that has played a role in helping me move forward.

VI. A Five Mile Run - As a part of my half marathon training program, I put in a 5 mile run at a 10'04" pace on one of my most hilly routes. It was my fastest run of that length so far and physically I felt great. After the difficult trip to the cemetery, I also found it to be emotionally healing. There is just something about moving along the solace of the road that feels powerful and peaceful all at once. Going for a run always helps me feel centered in my day and in my life and that couldn't have been more true today.

VII. My World Is Empty Without You & The Afghan Whigs - What would today be without something Afghan Whigs-related? For the past several weeks The Afghan Whigs have been uploading to Facebook various YouTube videos of songs along with brief background blurbs on the songs, usually from lead singer Greg Dulli. The video that went up today was, of course, My World Is Empty Without You (yes, a cover of the song by The Supremes). It happens to be in my top 3 AW covers of all time and the one that I have listened to again and again since Joe died. I feel every piece of that song and somehow there it was right in my Facebook

My World Is Empty Without You - Live by The Afghan Whigs

My world is empty without you, babe
My world is empty without you, babe

And as I go my way alone
I find it hard for me to carry on
I need your strength
I need your tender touch
I need the love, my dear
I miss so much

My world is empty without you, babe
My world is empty without you, babe

From this old world
I try to hide my face
But from this loneliness
There's no hiding place
Inside this cold and empty house I dwell
In darkness with memories
I know so well...

I only hope that somehow the band heard my Facebook plea to incorporate this song into their New Years Eve playlist. Hey, a girl can dream.

VIII. Many, Many Wonderful People - There are literally too many to mention, but today I received countless texts, emails, cards, FB posts and messages, tweets, hugs (both virtual and IRL), and phone calls. I am thankful for each one of them and the piece of my heart that each warmed. Once again, the support network that Domani and I enjoy is unbelievable and you all keep us going when it all feels impossible. 

I miss Joe. I miss Joe the husband and I miss Joe the father. There are many others who miss Joe too and I continue to find comfort in our shared grief and "Joe stories". We are bound by this wonderful man for as long as we live and that is a special thing. I am humbled by that bond and I am thankful for those who have been moved to offer their support without ever even knowing Joe. He truly was something special in that way.

Sunday, December 2, 2012

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!

Sunday, November 25, 2012

16 Things for 16 Years

I surrender. I'm going to do "the list". Here are my ground rules. I will list things I am thankful for as I reflect on this moment in my life. I will not list family, friends, health, or my job as one of my items. It's not that I am not thankful for those things. I just feel as if I should challenge myself a bit. I'm sure there will be places where those things will intersect with items on my list, but I will avoid listing them outright. I have chosen the number 16 to represent the 16 years that Joe and I knew each other. While we were only married for 3 years when he passed our friendship spanned back to my freshman year of college when we dated for the first time.

So, without further ado, and in no particular order, here are my 16 things for which I am very thankful.

#1. The World Champion NY Giants - When the Giants face the Packers in tonight's Sunday Night Football game, it will be an emotion-filled one for me. When they faced each other this time last year (once again for SNF), it was Joe's last night. I, along with others, sat at his bedside in our room watching the game and talking to him. By that point in the evening he was not verbally responsive, but he still responded to touch and I still felt strongly that he could hear us. I remember massaging his feet and talking to him about what was going on in the game. I'll never know how much of that game he was able to soak in, but the Giants gave those undefeated Packers a real run for their money. It was the last game I would watch with my Joe and in my mind it was also a turning point in our team's lackluster season. The team that we watched in the games after Joe's passing was a world champion team and there is no doubt that it helped my grief to have hope, even if it was in the Cinderella story of a sports team. With win after win after win, I felt Joe's presence with us and when it was finally clear they had done it, I was filled with every emotion in the book. No matter what happens with tonight's game, I will always be thankful for the Superbowl XLVI Champion NY Giants. They gave me hope at a time when hope was hard to imagine.

Cheering for the Giants in the Superbowl

#2. Electricity - If there is one thing I learned from my experience during Hurricane Sandy, it is how reliant I am on electricity. During the 9 days when my power was out, I spent varying lengths of time in my own darkened home and found myself hopelessly flicking light switches, washing dishes by hand, staring at a mound of laundry, wondering how to make a cup of coffee or charge my electronics, throwing out every last piece of food in my refrigerator and freezer, and generally freezing my butt off. Compared to what others faced (and continue to face), it was an inconvenience, but it made me realize how blessed I am to enjoy something as simple as a light switch that works and a dishwasher that turns on when I want it to clean my dishes on command.

#3. Photos & Videos - One of the things that my son and I both love to do is flip through the photos and videos on my iPhone. I certainly didn't think about it as I was taking them, but now that Joe is gone and that I am witnessing how darn quickly my baby boy is growing up, I am so thankful for the thousands of photos and videos that I have stored in various places. They are a unique tool for us to remember and laugh and even sometimes cry together. This video, taken in July 2011, helped me make sense of Domani's current obsession with wanting to "DRIVE" the car. He learned it very early on...from his dad. And for the ability to re-live that, I couldn't be more thankful.

#4. Running - Since I took up running in the late spring it has been the exact outlet I have needed for both my grief and the stresses of work & motherhood. Once I was physically active again I also realized how much my body had been craving the conditioning and challenge. I started with a goal of completing a 5k race and did that easily in April. My next goal was to improve my time and raise some money for the Colon Cancer Alliance in memory of Joe. In September, I ran the Undy 5000 in Philadelphia, beating my first time by almost 5 minutes and raising over $1,200. On Thanksgiving, upon the urging of a friend in Florida my goal was to run a sub-10 minute mile, which seemed like a stretch for me. I ran that Turkey Trot 5k with one of Joe's best friends and a friend of mine from church and came in with a 9'30" pace and a 29:29 time. Every time I achieve a new goal I am full of joy and thanks (and I'm usually pretty darn tired). In March, I will run my first ever HALF MARATHON and I couldn't be more excited. I'm thankful for the physical ability to run, for the people who watch my son so I can do it, and for the amazing community of runners I have met along the way.

#5. Child Care - Having family members as the primary child care providers for my son is a unique blessing that I don't take for granted. It allows me to work the odd hours required by my job without having to turn cartwheels to get it done. My sister has done an amazing job teaching Domani all sorts of things and after spending many Mondays with my Dad, Domani has a special bond with him. He and his cousin have developed some of the most adorable routines including the latest where they say "hug" and then hug and then say "kiss" and then kiss. He knows how to charm Grandma just so in order to get his brownie with whipped cream for dessert, but he has also learned from her about limits and how to make good decisions about his behavior. I am thankful for all of the people who help with taking care of Domani, including those who I haven't mentioned specifically. Each of them play a special role in his life and allow me to flourish as a single mom physically, emotionally, and spiritually.

#6. Travel - My son and I have been blessed with many adventures this year. Together we have traveled to Idaho, Yellowstone, the Grand Tetons, Walt Disney World, Virginia Beach, Southern Florida, and Niagara Falls. We've seen amazing things and spent time with friends and family throughout the country. I've written separately about many of these adventures so I won't elaborate here except to say that I am so thankful. This year, I have also had the chance to travel on some short trips without my son - to New Orleans, North Carolina, Toronto, and Cincinnati - and those trips have been good for my body, mind, and soul in ways that I could never fully convey. For that travel too (and for those who cared for my son while I was gone) I am so thankful.

At the aquarium in Virginia Beach in August
Touring Yellowstone National Park in June with Aunt Naomi
Meeting Mickey Mouse for the 1st time in November

#7. Random Shuffle - Whether it's on my iPhone or Joe's thumb drive of music, the random shuffle gods always seem to have a way of meeting me where I'm at. Sometimes it's a good cry. Sometimes it's a laugh. Sometimes it's a sing-at-the-top-of-my-lungs moment. Always it's like clockwork and I appreciate that.

#8. Go On - I discovered this show in October even though it had already been airing for several weeks. (I am, by the way, mad at all of you who knew about and didn't tell me right away.) I immediately connected with Ryan King, the main character in the show and how he deals with the sudden loss of his wife in a car accident. It helps that I have a sweet spot for Matthew Perry, but I enjoy the whole cast and most importantly for me, I feel it is a funny and sometimes sad dose of REAL LIFE. The first night I watched the show I used On Demand to speed through a bunch of episodes and, as is becoming my way these days, I wrote a blog post about it. The post became my most-visited ever (by far). A retweet from Matthew Perry will do that I guess.

This week's Go On episode was about starting to date again, a topic I've been mulling over in my own life since July or so in one way or another. Ryan's monologue at the end captured my current conclusion perfectly. I still don't understand how this show ALWAYS does that (and with sports imagery to boot), but I'm thankful it does.

Here's the monologue: "This has been a great Thanksgiving for half of us - the half whose team won. For the other half it's time for some brutal honesty. There are six weeks left in the NFL season. Physicists tell us that objects that suck for 11 weeks tend to remain sucking so it's time to think about rebuilding and you never know how long that's going to take. The right player could come along tomorrow and change everything. In the meantime, you gotta take care of the people you've got...they may not be the ones you choose, but they're your team.

Sometimes, especially recently, my church doesn't come from church. Amen, Ryan King. Amen.

#9. House Cleaning - Joe always did most of the cleaning in our home. I did my best to pick up the slack when he got really sick, but between caring for him, working full time, and caring for Domani, I just couldn't keep up. So, last year while Joe was sick a thoughtful group of my co-workers chipped in so we could bring in some help cleaning our house. Their generosity allowed me to continue the service for several months and I found it to be so helpful once it was just Domani and me that I made it a priority in our monthly budget. My spirits are lifted every time I come home to a clean house and it gives me a sense of peace knowing that Joe would be happy with our clean home.

#10. People Who Spur Me on to Greatness - I admit this sounds grandiose. But, I truly feel like this has been my life story, especially over the past year. Whether it is my running friends on Twitter, my spiritual director, or one of the many other people in my life who care for me and cheer me on, I can point to time after time when I have done what I thought I couldn't do or finally achieved what I always knew I could, because I have had the support of others. Two weeks after Joe passed away I found myself in spiritual direction talking about the practical support I had received while Joe was ill and the weeks following his death. 

In reflecting on it, I wrote the following in my journal (after listing the MANY people who had helped in just as many ways): "I really feel like those who are perceived as strong are really just those who have learned to be propped up by others. What is weak is going it alone. The support that I have received over the last two weeks is an indicator to me of what an incredible guy my husband was and how much his son will continue to be loved for years to come. In that I find great peace."

I have been told many times over the past year how "strong" I am and that it is "amazing" how well I am doing. Well, I can only attribute it to the hope I've found through my faith and the people who "prop me up". I achieve my racing goals, organize workers, kill the bugs in the house, care for my son, and get up every morning because of those two things.

#11. The Afghan Whigs Live - If you have spent any time reading my blog over the past 7 months then you know how important this year's Afghan Whigs reunion tour has been to me. I'm thankful for the incredible moments I've experienced, the places I've traveled and most of all the people I've met along the way. My support network has grown exponentially throughout this tour and that is the most valuable part for me. On New Years Eve I will enjoy one last show with many of the wonderful people I have met along with way and I'll be bringing along a new face - my sister Naomi who will be seeing the band for the first time. It will be a fabulous way to ring in the New Year and I can't wait. And, of course, those of us in The Congregation can only hope that on my thankful list next year will be some new Afghan Whigs tunes...

The Afghan Whigs - May 23 at The Bowery Ballroom, NYC

#12. GriefShare - I started attending a GriefShare support group earlier this year and it had a major impact on my ability to make sense of my own personal journey through grief. It had such an impact in fact that I helped to bring the support group to my own church this fall. I am thankful for the Cranford Alliance Church and the faithfulness of the GriefShare leaders there who comforted me, cared for me, and prayed for me. I have formed lasting friendships out of that group and for that I am thankful. (To find a GriefShare group near you, visit

#13. Good Food with Good Friends - I don't do it as often now, but I love eating out. My friend Erin is a favorite partner in checking out new restaurants and this year I will especially remember an excellent Thai dinner with her in Toronto and a fabulous experience at Lilette in New Orleans. I've also enjoyed meals at Makeda, my favorite Ethiopian restaurant, on several occasions this year, and while it's not high class dining, the meals I have shared at T.G.I.Friday's in Flemington with my friends Heather and Sara have been particularly special. I love how friends and food always fit together so easily.

#14. Twitter - My go to source for news, laughs, and support. It's an important social network to me and I'm especially thankful for the role it plays in my grief journey, in my spiritual growth, and in my fitness challenges. If you are just getting started on Twitter, here are a few of my favorite follows: @UnvirtuousAbbey @oldmansearch @pourmecoffeee @MalindaAnnHill @fitsngiggles @theafghanwhigs @breyeschow @Swimmunity @grammercie @AntDeRosa @MomsGottaRun @amypinardphoto @ANNELAMOTT @BrianMerritt @denisleary @KBurkhardtSNY @helenabrit72 @CCAlliance @WillMcAvoyACN @NickWithMS @FauxCowherd @metsgrrl @derricklweston @megateer @tawndawn @asiansplenda @karenror @bethscib @MRScrashmattb @BobGoff @lgibbeadle @RADickey43 --- Oh, just go check me out @MamaDeak and see who I follow!

With #MotherRunners and #AfghanWhigs Fans
 @MalindaAnnHill & @fitsngiggles at AW Soundcheck Party!

#15. Laughing - Whether it's a corny joke, some sharp wit, physical comedy, or that offbeat humor Joe had, I am thankful for the chance to laugh every time I get it. Domani will laugh uncontrollably after scaring you by saying "BOO!" and I can't resist laughing along with him. Recently, he has taken to saying random words in a deep, raspy voice and it is absolutely hilarious. As a way to remember Joe this weekend I've been sharing with family and friends a short note he sent me "anonymously" while we were in college during a time when we were passing a dollar bill back and forth as a joke. 
The Joe Note
The text of his note reads: This dollar is from some anonymous sender. It's definitely not from Joe, so don't send it back to him. Thanks for your cooperation. Joe...I mean, some anonymous guy.

This note (and plenty others like it) still make me laugh and I'm thankful for that.

#16. Mets Tickets - We were fortunate to have a 15 game pack of tickets to the Mets this past season and will enjoy another 15 game pack next season. Domani and I went to games with many family members and an assortment of friends, sitting just in front of the SNY broadcast booth. We saw some exciting wins (like R.A. Dickey's 20th!) and some miserable losses, but we always had a special time. We also went with a group to the ballpark's Stand Up To Cancer Star Wars Night and even though the Mets lost (in typical Mets dramatic fashion), it was a powerful moment when that whole stadium stood up. I was so very thankful to be there. At a Mets game (any Mets game), Joe feels close and we can allow all of our other cares to fall away for at least 9 innings. The best part about our tickets in 2013? They will include our first ever All Star Game which I'm sure will be on my "thankful" list for next year.
Opening Day 2012

Thursday, November 22, 2012

Thanksgiving Eve

I'm working on a Thanksgiving post which will go up at some point this weekend, but in the meantime, I wanted to share some of my reflections from Thanksgiving Eve of last year. Since I am now looking back, I can set the stage a bit before sharing my old post. The "errand" I was running was picking up my sister Naomi at the airport. Her arrival from Idaho was a surprise to my family. The only people who knew about it were Joe, Domani, the dear friend of mine who bought her ticket, and one other close friend. She stayed at our house on Thanksgiving Eve. It was a very special time. When she walked up from our basement and surprised my family just before our Thanksgiving meal it was one of the most memorable moments of my life. And Joe was right there in the middle of it.

There are two things that I especially love about this post now looking back on it with a year's perspective: The TINSEL Holiday Strategy from Dr. Bruce Pfohl and my own realization as to how important it is to "step back and be". As I re-read this post, I realized that I have integrated both of these things into my life pretty well over the past year and the result has been a more healthy me - spiritually, emotionally, and physically. 

There are many things that we cannot control in this world. I'm thankful that in the midst of my loss and pain, I've been able to seek love and growth. May that continue.

With Naomi on Thanksgiving 2011 (photo by Joe)
Thanksgiving Eve
Written November 24, 2011 1:43am by Anne Luck-Deak

I'm really excited about spending some time with family this weekend and unplugging a bit from the hustle and bustle of work. Even with everything going on, we are still so blessed. 
Tonight I was out running an errand with Domani and he became very upset. He was crying. I was stuck in traffic. I could feel the stress level rising. I kept thinking "I just need to get home, let me just hurry home". But he kept crying and it was like we were in slow motion on the road. Then I realized I was almost out of gas and as if designed by heaven itself there was a gas station right off to the side. Not just any gas station either. One with a convenience store. I got out and while the tank was being filled took Domani into the store to walk around. It was just what we both needed. The stress level quickly returned to "normal" and we were back in the car and on our way in no time.
God used this little incident to teach me something very important today, not just about caregiving but about life. I don't always have to keep plugging along. I don't always have to be the brave one or the one with the answers or the one in control. Just like tonight when I surrendered to the situation at hand and consequently found some peace, sometimes it's important just to step back and be. Just be. Sometimes what I think of as a waste of time or a nuisance is really a path to peace and perspective.
I will close with this - something related that was shared with me recently. Maybe you will find it as helpful as I did.
Dr. Bruce Pfohl has come up with what he calls "The Tinsel Holiday Strategy". It resonated with me and I think it works well not only for caregivers but for anyone wanting to keep their sanity during the holidays.   

T - Tell others what you want and what is important to you as part of your celebration of the holidays.
I - Inquire about what is important to others' celebration.
N - Negotiate how you will celebrate. Recognize that the holidays often bring together people with different family traditions.
S - Share the work and responsibility. Some people are very good at seeing what work needs to be done, others need a reminder or some scheduling. 
E - Enjoy the moment.  Rather than dwelling on the ways that your holiday does not fit the fantasy, find ways of enjoying the reality. Again, keep expectations for the holiday season manageable.
L - Limit.  Respect the limits and boundaries of others and be clear to yourself and others about your limits.

Monday, November 19, 2012

An Encounter at Stop N Shop

I was running late for the grief group I help lead at my church. My legs and hips ached from the 8 mile run I had just completed. My complete lack of brain function had just forced me to loop from the Stop N Shop parking lot to my parents' house and back because I had forgotten my purse. At least I was quick to find the cookies I needed and then the only line that wasn't backed up to the aisles.

The woman in front of me and her daughter were moving along quickly,which was good for my stress level. I like when people know what they are doing in a checkout line. With the minor exception of waiting a bit too long to swipe her credit card, this mama had it together.

Then, it happened. I noticed the young man who would be my cashier. I looked at his hair and his face and his build and I saw one of the many photos of teenage Joe. I did a double take and he even had a birthmark on his cheek, just like Joe. It was un-freaking-canny. And then he spoke, interacting with a co-worker who was taking his re-shop (is that what they call it in a grocery store?! My only retail jobs have been in toys.) Anyway, his voice and mannerisms - Joe again.

By this point he was ringing up my items and somehow I managed to let him know I didn't need a bag. While I was swiping my card I glanced at his name badge.


My aching legs and hips no longer relevant, I couldn't get back to my car fast enough.

My apologies to the lady I almost ran over on my way out the door, but I really needed some privacy within which to cry. And cry. And cry.

Friday, November 16, 2012

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.

Tuesday, November 13, 2012

Soarin' at Epcot - Carry on and Live Well

Tonight, on our last night of vacation, I had one of those "Joe" moments again. It was unexpected and I'm thankful to Joe's cousin Tony for making it happen. As these things often go he had no idea ahead of time what was coming. He just knew that Soarin' was an awesome ride and wanted to give me the chance to experience it.

So, after the two of us drank our way around the "world" at Epcot (which basically involved some tequila in Mexico and some beers in Germany), Tony took the little guy so I could be among the last wave of enthusiasts to enjoy the popular ride called Soarin' in The Land pavilion at the park. (Hot Park Tip: Even though Epcot closed at 9pm tonight, the Soarin' ride was open until 10pm so the line that would normally be an hour or more was literally 5 minutes when I went at 9:25pm!)

I found myself in line next to a family with a boy who seemed to be about 7 years old. He was going on Soarin' for the second time today and, if not for his size, could have passed for a Disney employee himself based on his unbridled enthusiasm for the ride. He talked to me about it while we waited for our chance to soar above the trees, the ocean, the desert, the Disney fireworks, and so much more. When we sat down and buckled in he let me know that I could use the armrests because he would be keeping his hands up in the air during the ride (he had clearly discussed this with his dad who was sitting next to him - completely adorable). I told him that if he saw me gripping the armrests it probably meant that I was scared. He laughed and I appreciated that he was humoring the old lady.

Mid-way into the ride he turned his head to me and asked how I liked it (could this kid BE any more adorable?!) If it weren't so dark, he probably would have noticed the tears in my eyes. I'm glad he didn't because if he had I'm sure he would not have believed me when I told him that I loved it. The sensation of flying that this ride elicits was a powerful experience for me. In particular, during the segments when we were flying over the ocean, I felt Joe's presence in not only an emotional way, but also a physical way. That has only happened to me a few times since he died in December of last year, but when it does there is just no way I can hold back the tears. It's as if he is giving me a hug and and a shot of adrenaline all at once. The message I get is "carry on and live well".

Even now as I type this post it gives me chills. And tears. It was a perfect wrap up to this trip.

I feel like for the past 5 days I have been living very well. This Florida vacation has been a special time to have fun with the rockin' two year old who daily melts my heart and to build a sweet friendship with Joe's cousin Tony. We made lots of wonderful memories and the proof is my head to toe exhaustion. At least after having the chance to go Soarin' tonight, my heart is just a little lighter and my vision just a little clearer.

Thursday, November 8, 2012

Hurricane Sandy

I am finding it quite difficult to put this past week into words. I've been literally working on this blog post since last Tuesday. There's just been so much emotion. Fear. Sadness. Anxiety. Helplessness. Anger. Frustration. Thanksgiving. Relief. Pride. Hope. Grief. Lots and lots of grief.

And there was also sleeplessness. And physical pain. And eventually, even laughter. After 4 days of tension and fear and anxiety, on Wednesday, October 31st I finally laughed and laughed and laughed. Thank God for my son who decided to be a ghost for Halloween by throwing his blankie over his head and saying "BOO!". And thank God for Jon Stewart ("I guess he found that f*@king light switch, huh?"). Seriously. I needed those laughs like some really needy thing needs whatever it really needs.

On Sunday morning before the Hurricane, I drove home from a good friend's wedding in North Jersey with a mental list of things to do running through my brain like the Times Square Stock Ticker. It included, stopping for gas, putting away all the items in my backyard, picking up some extra flashlights, and then finally picking up my little man and watching the Giants play the Cowboys. The stock ticker in my brain was overwhelming because it was also clouded by a million other things I HAD to do - fill the bathtub with water, set up the pack n play in the basement, fill pitchers with drinking water, turn up the heat, put little bags of water in my freezer, run the dishwasher, pay my bills, stock up on ready to eat food, and on and on and on - but mostly it was overwhelming because I didn't have Joe there with me. I did get to some of those things, but not all of them and thankfully, we still survived. 

Domani and I spent Sunday afternoon, all day Monday and most of the day Tuesday in our house, witnesses to Hurricane Sandy. Our power started going off and on for short periods starting at about 6pm Monday.  For my little man, the loss of electricity was the worst part of the storm. He of course had no concept of the possibility that one (or more) of the 3 huge trees in our front yard could have fallen on our house. Or of the possible danger that comes with downed power lines. Or shattered windows. Or cars being swept up and dumped on top of us (ok, that last one was more from the imagination/movie category). In fact, until the lights started flickering, he was having a GRAND time.

Domani playing peek a boo with his blanket
 before the power failed on Monday evening.

Posing for a "lights on" photo.
The first time our lights flickered I thought that the little guy would NEVER STOP CRYING. My little tech kid. Thankfully, the first time it happened he was nearby me and I had a flashlight handy. The power came right back on and he quickly forgot the horror of being without power. He became brave again, wandering all over the house even though I tried to keep him close. The power flickered at least 3 more times before it finally went out for good. And I mean really for good. It would be nine days until we got it back - on Election Night the lights would shine again in my house. (Metaphorical if you ask me.) Once the power was officially out (a little before 8:00pm) it was time to make our way into the basement. Our little family of 3 had slept there during Irene too, unable to relax in our bedrooms with the winds howling outside. There was no way that my son and I were spending Sandy anywhere else but in the basement.

Camping out in the basement during the Hurricane.
Being the supermom that I am, I proceeded to bribe my anxious, crying son with M&Ms and a flashlight so I could have some time to pack whatever perishables I could into cooler bags. I made sure I had one that fit the bottle of white wine that I had been drinking. Hurricane priorities. (Please note that my son was safely eating M&Ms by that point.) Once I had packed up whatever I could we read his Elmo book on the iPad about 4 times, cuddled, turned on the sleepy time play list, and let nature take its course. 

Unable to sleep, I began reading R.A. Dickey's book Wherever I Wind Up and listened to all of the horrible noises outside which, of course, would have been much more horrible had I been upstairs. I poked my head upstairs one last time before I allowed myself to fall asleep. Even though I had heard some pretty loud crashes, I couldn't see anything from my kitchen windows that seemed amiss so I went back to the basement and fell asleep. The morning revealed some real damage although miraculously nothing on my property. I found out in conversations with neighbors later that EVERYONE was nervous about the possibility of my trees coming down. Certainly none more nervous than I.

My kitchen looks out onto my neighbor's house
where this happened.

Looking up the sidewalk from my house.
What's left of the tree that fell across our road.

Once it was clear that the power was not coming back on anytime soon, I made the decision that I would pack an overnight bag and my son and I would head over to my parents house and the promised land of power and heat. We left Tuesday late afternoon and the 9 mile drive took us over an hour. At least I had filled my gas tank on Sunday. I know that I cried at least twice during the ride, overwhelmed by the destruction I was only beginning to hear about and missing my husband more than I could ever express. The huge weight of responsibility for my son and for my household was just too much to carry without a release. I'm sure I cried again when I got to my parents' house and walked in to the warmth and light with Domani, although much of the time we spent there is a blur.

Domani certainly had a good time being at Grandmom and Grandpop's house.

Playing in the sunroom at Grandom & Grandpop's. His stay there also included
later than usual bedtimes, watching movies, and fort building.
There is no such thing as dessert WITHOUT
whipped cream at Grandmom & Grandpop's house.

On Saturday, my mother went with me to my house and we proceeded to throw out all of the unsalvageable items from my refrigerator and freezer. I felt sad. At the moment when we pulled out those chocolate bears with "Anne" and "Joe" written on them from last year's Thanksgiving dinner, I felt like I would just crumple to the floor in a heap. It wasn't from surprise. In fact, I had warned my mom that when she came across them, they were to be kept no matter what. But then she found them. And it felt like I had been punched in the gut. Oh, Sandy. How you stir up pain that I didn't realize was still there. We kept the chocolate bears. They remind me of the scene from True Blood where Sookie eats the last pie that her Grandma had made before she died. I feel like I will eat them on Thanksgiving in a private moment of remembering and grieving. Or maybe I won't. It's funny how a Hurricane can stir up more than just uprooted trees and floodwaters.

One of the best parts of the Hurricane for me was the time I was able to spend with my parents and Grandfather. I was there with them when we got the news that my Grandfather's sister had passed away after 94 full and wonderful years. There were many moments of watching my little guy play with his grandparents and his great-grandpa. And there was Scrabble. Confession: it's hard for me to play Scrabble now. It was a "Joe" game. In him I had found my Scrabble equal and it was always great playing with him (although I NEVER particularly liked losing to him). When we would play with my family, Joe and I would often be on a team and more times than not we were unstoppable. I miss that. With each word on a Scrabble board, I miss that. On Saturday night, I think I had some help from Joe. I beat my mom and dad pretty handily, which does not usually happen.

My Instagram explanation of this photo:
1) #Scrabble with the parents. Convinced I had a little
help from Joe - my letters were just TOO perfect.
Just ask my mom & dad.
2) I totally blew it by not challenging my dad on "roja" and "oz"
but I kicked his butt anyway.
3) I feel like I have to add that I would have TOTALLY challenged
him on "roja" but I LITERALLY missed it. I was reading an email
on my phone. D'oh.
I'm glad we played Scrabble. It was a well-timed distraction from the storm aftermath and connected me with Joe at a time when I needed that encouragement.

And then on Sunday, I ran. To the cemetery. It was a good run. I felt powerful. I felt in touch with myself emotionally and spiritually. It was everything that I have found running to be since I started doing it again after a 15 year hiatus. When I arrived at the cemetery right around the 3.5 mile mark I was already feeling heavy with my loss. I cried on that lonely bench in the mausoleum for a good ten minutes, allowing myself to feel whatever I was going to feel. Anger. Sadness. Jealousy. Loneliness. Fear. Why did I have to go through this scary storm without my Joe? What if I end up going through every one of my life's storms alone - single supermom extraordinaire who really would rather not have to be so super? Why my Joe? There was no voice from Heaven answering my painful questions.

But there was this when I was leaving the mausoleum:

I call this one "HOPE" because that is how it made me feel.

It didn't make me miss Joe any less and it didn't assure me that maybe there is someone out there to help share the "super", but it did bring some hope to my soul. And it gave me the physical strength I needed to run the 3 miles to Tastee Sub to pick up my lunch. Thankfully, they had power.

And, on Tuesday night, so did I.