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.

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!

Strength & Love - Living the Fall

I've spent a decent amount of time these past few weeks thinking back over life this time last year. For me, that has involved revisiting both my personal journal and the CaringBridge site I maintained for friends and family during the last two months of Joe's illness. I am now more thankful than ever that I was finally able to convince Joe in October of last year to let me to start the blog on CaringBridge because looking back on it is very meaningful. Joe was always relatively private about what was going on with him to the point that even some of his close friends and family members didn't realize exactly how serious his illness had gotten by the time the fall season was in full swing. Part of my hope in integrating these posts with my current blog is not so much to recall the difficulties of last fall, but to really remember the sweet moments, those times when even in the midst of pain, love was shining through in our lives.

I have found looking back on these blog posts to be a cathartic part of my grief journey because they are a way to remember Joe and how much strength and love he showed throughout his illness. Those things about him continue to be a model for me in my own life. It's so easy to lose perspective and call this my WORST day or complain about how EXHAUSTED I am or get ANGRY about the traffic or an issue at work. Revisiting these posts reminds me to re-focus on strength and love. So, I've decided to share some of these posts that had previously only been available on our protected CaringBridge site. I don't think I will necessarily share them all, but as I walk through this fall season which will inevitably lead to the cold winter and the one year mark of losing my Superman, I know I will somehow find comfort in walking through this season "with Joe".

Superman

Written Oct 13, 2011 3:12pm by Anne Luck-Deak

Many times over the past year and a half I have told Joe that he is my Superman and I think there is no time that has been more true than these past few weeks. After powering through intense radiation on his spine, he had surgery this past Tuesday to deal with the accumulating fluid in his lung. In the end, more than 2 liters of fluid was drained both through the surgery and using the catheter that was placed. (Imagine, a 2 liter bottle of soda - that's a LOT!) It's no wonder that he is now breathing easier!

In the midst of it all, we celebrated a very HAPPY 1ST BIRTHDAY with our little man and enjoyed all the love and support from family and friends. Domani enjoyed his birthday cupcake on Tuesday although he seemed more interested in eating his party hat (he'll learn)! The time has just gone by so quickly and we are looking forward to celebrating with the whole family this Saturday.

Joe started back with his chemo treatments today after a long hiatus for his radiation. Here's to hoping that this helps him find relief for some of his symptoms and that he is able to fully enjoy the party on Saturday.

Hurry Up and Wait

Written Oct 15, 2011 1:40am by Anne Luck-Deak

On Thursday, Joe resumed his maintenance chemo with the hope that it will get him back on track after a month and half with no chemo treatments while he received radiation to his spine. He is tired and still experiencing some side effects from being off the maintenance chemo for so long, but we are hopeful this will start to get the tumors back under control. We will just have to wait and see.

Thanks for all your support over this past week especially - it has not been an easy one for us. What a blessing though that in the midst of a tough week like this we were able to celebrate the birthday of our own little miracle. Domani is growing up so fast and we treasure every moment we get to spend with him. Extra hugs to you all today!

Happy Birthday, Domani

Written Oct 17, 2011 12:35am by Anne Luck-Deak

Well, it finally feels official. Now that we have celebrated Domani's first birthday with a proper party it finally feels like he is REALLY one! 

What a blessing it was to be surrounded by family and friends, to watch Domani running around the firehouse shrieking with his cousins and friends, and to even have Naomi join us via Skype! Domani is a bit slow on the unwrapping so we still have some unopened presents for him to get through, but it's just a way for his celebration to last even longer! We are truly overwhelmed by the generosity shown to Domani and to us.

While the party was a lot of fun it was also exhausting (for all 3 of us!) We have spent most of the time since then resting and enjoying some leftover goodies.

While Joe's appetite is still not great and he is experiencing some pain, Domani's birthday celebration went a long way towards lifting our spirits. We are so thankful for our little man and the joy he brings to our lives.

Looking back on these posts, I am reminded why I got my Superman tattoo back in March. I am also reminded of Joe's sheer joy at being able to be with his son at his 1st birthday party and that Domani's party was the last time Joe drove himself anywhere alone. And I laugh at the fact that just like last year, Domani still has a stack of birthday presents to open several days after his party. I remember our optimism that somehow this next chemo treatment would turn the tide in the cancer battle and buy Joe some more time with us. I remember the happiness of Domani's birthday celebration and how blessed I felt and I remember how completely and totally tired we were when it was all over.

I missed Joe incredibly when we celebrated Domani's birthday this past Saturday. It was a lovely day and I just know he would have had a blast following our 2 year old around and showing him all there was to do at Von Thun's Farm. Joe would have had so much fun with Domani and his cousins and there were quite a few moments when that realization took over my thoughts and emotions. For me though, the moment when I missed him the most that day was back at home, during the afternoon family nap time that followed the party. Because this year, Joe's nap couch was empty and that still has a sneaky way of yanking on my heart strings.