Tuesday, April 30, 2013

Friends and Memories

Today went quickly which I guess is a good thing.  I had a number of errands I needed to run, those things you can only do Mon-Fri between 9-5...not easy to do when you work full-time.  So among other things, I made a number of phone calls, returned medical supplies to Cooley, and had a nice lunch with my mom.  There was a level of comfort going to Cooley.  I guess I shouldn't be surprised since that's where I spent every day for three weeks, where Ed spent his last days, and I clearly have grown fond of the place and the people there.

Lunch with my mother was nice--a rare treat.  Although it saddens me that we now have this special bond and commonality.  Not only did she lose her husband (my father) 23 years ago, but she also just lost my brother who lived with her.  So we are both currently mourning together.  The same is true with my friend Anna (who lost her husband Bob in February) and my sister-in-law Mary (who lost her husband Billy 5 years ago).  And I find myself drawn to these woman because until you lose your spouse, you truly do not understand the depth of pain and grief.  But what I wouldn't give to not be part of this special club.

This afternoon I also stopped at the Spirit Haus to see Marvin and then stopped at Amherst Glass to see Grover.  Seeing Ed's friends makes me feel a bit closer to Ed and helps to keep his memory alive.

And although I'm trying to be productive and move forward, I still miss Ed at every moment.  I'm learning to focus on the memories and all the positive things we shared even though it is easy for my mind to dwell on the things that will not be and the time lost together.  And I still rethink the past month and whether things I did or decisions made had any impact on where we ended up.  But I know this is not healthy and so I focus on the blessings and the things I need to be thankful for.

So what am I thankful for today?  I am thankful for the friends and family that Ed had and the impression he left on all of them and for the kind words and memories that they share with me about Ed.  I'm learning what a positive impact he had on many people and am still amazed at how often Ed spoke highly about me and Dan.  For I never doubted his love for both of us, but never imagined how often he told others about us.

I love you Ed and the house is empty without you.  And my heart aches and the tears flow as I walk through this house and I keep waiting for you to come through the door and then I realize you won't and I'm here and alone and you won't be back here again.  At least not physically.  People tell me you are with me and watching over me and Dan--but I don't feel it yet and I don't see the signs everyone says I'll see...and I miss you so.  But I know each day will get easier and I know you will continue to live on in me, Dan, and the memories of all your dear friends and family.  Our lives will never be the same and my heart still breaks...

Monday, April 29, 2013

New Routines (Sadly)

Since I'm heading back to work soon, I need to create some new routines so I'm going to try to update this blog each evening since I know my time in the mornings will be limited.

The day was busy with getting things done that have piled up over the past month.  I did spend a few hours outside raking and cleaning the flower beds.  I did a lot more than I had planned to but the physical work was good.  Of course, I'm told keeping busy is good for me.  However, raking does not occupy my mind and so I spent the whole time thinking about Ed--how caring for the yard was always his job (I took care of the house) or how if I raked (which I didn't mind doing), he always picked up the piles (the part I didn't like).  We had a good balance and complemented each other very well.

The sad moments still came and it's true that they sneak up on you.  For the first time in a month, I tried to sit down and read the newspaper and do the puzzle.  But as soon as I started the puzzle, I started tearing up.  This was my old routine...something I did every morning while Ed was still sleeping.  And today it made me sad and I had to put it aside because it reminded me of what is no longer.  At another time, I was looking through coupons/gift cards and came across the gift card my brother gave Ed for Christmas and the tears began to flow again both for the loss of Ed and my brother.  And as I sat at the kitchen table and had dinner alone I realized that this is going to be the first of many evenings I will be eating alone and it makes me miss Ed terribly and what will no longer be.  And it hurts so bad.

But the amount of time not crying outweighs the periods of crying so I guess that's a good thing.  I have begun wearing some of Ed's clothes--his t-shirts while I'm working in the yard; his sweatshirt while I'm lounging around the house--and they bring me such comfort.  Of course, I can tell I'm still not 100% focused as I looked down at my feet this evening and noticed I had two different socks on (although if you ask my nieces, this is fashionable).  And I laughed because I'm clearly still somewhat of a basket case!

Today while replaying moments of the past month and whether I should have done anything differently, I decided that I would commit myself to identifying one thing each day that I am thankful for.

Today's thankful thought:  I'm thankful that Ed and I had those three weeks together in the hospital where I could be with him every day, by his side, and care for him.  Although those days were draining, I know Ed knew I loved and cared for him and that he was the most important thing to me.  I was there each day with him and did what he wanted or needed me to do.  I was his protector, his decision maker, his confidant, his most-trusted friend, his love, his wife.   I am blessed that our final days together were spent with loving words and tenderness.  There was no rushing here or there, distracted by other life matters, or being impatient or short with each other.  Only loving words and 100% attention devoted to him for him.

Hanging on my refrigerator is the saying "Always leave loved ones with loving words; it may be the last time you see them." and it is something I strive for each day.  I am eternally grateful that I was able to do this with Ed every day for the last four weeks of his life.  For that I am thankful.

What are you thankful for today?

Made It Through the Night

For some reason I'm proud of the fact that I made it through last night.  I had my weepy moment before bed.  It just comes when I least expect it.  When my thoughts creep in and I'm reminded that Ed is gone and he won't be back.  That is what breaks my heart the most and I still can't grasp or understand how a person can be here one moment and gone the next.  And I wonder how long I will need to live my life this way.  And I know that my hours of mourning are turning into days and weeks and then months and at some point I will pick my head up and we will be marking years since Ed passed.  And I just can't fathom time moving on without him.  It seems so unfair.

And the pain wouldn't be any less if he was 70 or 80 or 90.  When you fall in love and marry someone and spend your life with them, the hurt and emptiness will be there no matter how long you are together.  And death will always come--it is inevitable--and so I am surprised at how unprepared we are for it.

Last night the same sleep pattern happened--I woke less than an hour after going to bed.  However, I woke at 2:30 am...not 2:00 am like every night previously.  I also slept past 6:30...  I take these as signs that life is slowing moving forward for me...maybe just by 15 or 30 mins, but a change.

And as I walked into the kitchen this morning and opened the curtains, the tears came again.  Just for a brief moment and the hurt was in my heart.  And the hurt is still here as I write to all of you.  And it's Monday and everyone is getting back to their lives--going back to "normal" or finding their new "normal".  Maybe it was a mistake not to go to work today.  But I have a list of things that need to get done and some of these things need to occur during business hours.  And not getting them done will just stress me out more.  Since anyone who knows me, knows I like to be in control and be on top of things.  So this past month plus the weeks prior when we were dealing with the passing of my brother, really kicked me on my butt.

But I came downstairs, brewed myself a cup of coffee, and turned on the news.  An old routine I haven't experienced in over a month.  And I'm learning to find joy and solace in little things--for the Keurig that Ed bought us for Christmas 2011 and even though it was more expensive than our regular coffee, that Ed enjoyed having specialty coffee every day and it was well worth the extra cost; for the fact that Ed straightened out our Charter bill and got new DVR boxes (at no additional charge) for our TVs and so I'm watching HD while sitting in my office.  And this has been our home since 1982.  Everything that surrounds me is from our wonderful life together in this home and so I do find such comfort and love and warmth here.  It is our home.  It is Dan's home.  It will always be Ed's home.

Sunday, April 28, 2013

Cheers!

Oh, Box O'Sangria how I like you so.  Last Thanksgiving Ed found this box of Sangria that we all loved and we referred to it as the bottomless box since we enjoyed it all day on Thanksgiving.  Since then, Ed has kept a box in the frig and we all enjoyed a glass here or there.  Just last month I went with him to the Spirit Haus to pickup more so I knew exactly where to find it when Dan and I stopped this past week.  And so we continue to have our bottomless box of Sangria in our frig and Dan and I have enjoyed the occasional glass this past month.

Tonight, as I sit alone in the house after Dan has returned to his apartment, I have decided to pour myself a glass and update the blog this evening.  For tonight marks exactly one week since Ed passed.  It was exactly 1:55 am that Cooley called to let me know.  So before I become totally saddened by this milestone, I want to recap our day which for the most part was a pretty good day considering.

In case you haven't realized it already, I have the most wonderful son in the world.  Not only has he been my rock this past week and being my shoulder to cry on, this morning he joined me so that I wouldn't have to attend church alone.  Now I know this sounds crazy since everyone at church cares about me and Dan.  But there are some first steps coming up that will be difficult--going to church, going to choir, going to work.  So it was very comforting this morning to have Dan with me so I would not be alone.

After Mass, we drove over to the cemetery to visit Ed.  We took some pictures, talked about grave markers, and took a few flowers and a ribbon from the arrangement we bought.  It was a peaceful visit and we both commented how we could stop by to visit--Dan when he's coming to/from Waltham as he drives right past and me after Mass each week.  Of course my sad moment came when I acknowledged that there will be a time when coming to see Ed won't be the priority--that something else will come up, something else will be more important, and that saddens me because I can't fathom that at this time and, in truth, I don't want that moment to ever come.  But I know it will and today, that makes me sad.  Maybe I should seriously consider visiting the cemetery less frequently.  After all, I can visit with Ed just as easily sitting here at home with a glass of Sangria in my hand!

Today Dan and I also cooked burgers on the grill.  That was one thing Ed taught me to do last summer.  It was always Ed's job to grill, but last year I told him I needed to learn to do this and I did. Of course Dan helped me "inspect" the grill because I'm paranoid about gas grills (for those who don't know that is because we had a gas grill fire many years ago and Ed suffered burns from it).  We did pretty good cooking the burgers and had a nice dinner before Dan headed back to Waltham.

After Dan left, I went outside and did some raking.  I have created my "to do" list and have many things I want to get done in the next couple days before I return to work.  I am so touched by the neighbors who came to the wake or funeral (or both) or have stopped by the house.  I am perplexed by those, though, that knew Ed and haven't acknowledged his passing.  We live on a short, dead-end street where we know everyone and this thought came to mind as I was raking by the edge of the road and they would just drive by me.  I know some people don't know what to say when someone passes, but I learned many years ago when my father passed away, that not saying anything at all is much worse.  A simple "I'm sorry for your loss" suffices and is much better than avoiding me or the topic.  Your lesson for today.

My funny moment today happened this morning.  CVS called, as they frequently do, regarding Ed's prescriptions (when they think they need refilling, they will call us).  The gentleman on the line was leaving a message for Ed to call him back so I picked up the call.  "Is Ed there?" he asked.  To which I simply replied "No, he passed away."  And I said it so matter-of-fact...it just came out and when the poor guy on the other end of the line stammered and was like "oh, uh, oh", I just laughed to myself (I laughed out loud only after hanging up the phone).  I know, it really wasn't funny, but that poor guy from CVS did not know what to do or say.  At least he said he's update Ed's profile so they will stop calling!

Although we had a busy day, it was not without thoughts of Ed and missing him terribly.  Again, it was small things that crept up on me--seeing candy I had given him that went unfinished, his sneakers in the hallway.  I still can't grasp the idea that he is gone.  How do people every day just pass away and life continues on for everyone else?  And this is where faith helps me.  That there is something bigger and greater than our lives on this Earth and that death is not the end but the beginning of something so wonderful and that we will meet again.  And if I am wrong, I will never know and so to live with this faith gives me the comfort I need.

I am so thankful for Dan and our love for each other because without him I fear the darkness I could easily slip into.  But I won't allow myself to because Dan is a reflection of mine and Ed's love and my love for Dan and his love for me sustains me and helps me go on.  And even though the pain and grief I feel today is so great, I would not trade the love and joy Ed and I shared.  And as I told Dan, love is worth the grief.

So before I get too weepy, I'll end my note for today and pour myself another glass from that bottomless box of Sangria! Cheers!

A picture from Christmas of our Box O Sangria!

Doing "Stuff"

I dreamt about Ed last night and I remembered the dream when I awoke.  It was not some movie-type dream where we were running through wheat fields or on the beach hand-in-hand.  But instead we were together in a hospital laying together in each other arms.  Ed was awake and talking to me and not in pain or struggling as he was in his last weeks.  And our talk was not about romantic things...I remember talking about Foley bags!  (Yes, I have bizarre dreams!) 

My sleep pattern continues and it puzzles me.  Within the first hour of going to bed, I awake.  It feels as though I have been sleeping for a while, but no matter what time I go to bed, it is always within that first hour that I wake up.  I guess the good thing is that I am falling asleep shortly after my head hits the pillow.  And then I always wake up in the middle of the night.  I adjust my eyes to read the time on the clock and it's always 2:00 am (okay sometimes it's 1:59).  I know the call from the hospital to tell me Ed had passed was at 2:00 am.  However, this sleep pattern began while Ed was in the hospital before he passed.  It was always my greatest fear that I would get a call it the middle of the night so I always kept my cell phone on the night stand.  And until 4/22, that call never came.  But I always awoke around this same time every night.  Not that I could tell you any deep significance of this, but rather, it is just an observation.

Yesterday I was motivated to do some things.  There was a recycling fundraiser at Hopkins and a bottle drive for the 6th graders.  So we loaded into my car two bags of cans/bottles and then some old computer components and brought them over.  It felt good to get rid of some "stuff".  We also stopped and dropped Dan's suit off at the dry cleaners on the way.  Doing things is a good distraction and I'm proud of myself when people are nice and say "have a good day" and I don't bite their head off or "how are you today?" and I smile and lie and say "good".

Dan and I decided that we would plant the bush that was given to us by Missy, Dennis, Billy, and Courtney.  It took us a bit to decide where we wanted to plant it.  Ed was always good at this--he just had an eye for it.  But we agreed on a spot near the driveway where Ed, just last year, created a small gardening area and had planted some flowers.  As we planted the bush (thank God Dan is smart...he knew instinctively what to do) I recalled when Ed created this area--digging and planting and creating a beautiful space.

The day was beautiful so I putzed around in the yard pulling my little wagon that Ed bought me for Mother's Day a few years back (how I wanted my own fancy little garden wagon) and I picked up small branches and pine cones in the yard.

I raked the side yard and several times I thought how odd it was that only a day ago we laid him to rest and now here I am working in the yard as if nothing happened.  That felt so wrong to me.  How could we be doing "normal" things as if nothing happened and it made me sad and angry all at once.

Thankfully Dan was here to talk me back to being reasonable.  That is what Ed did too.  Whenever I put too much pressure on myself or I was being unreasonable, he always said the right things to make me feel better.  And I knew that.  I could voice my crazy thoughts that I knew didn't really make sense, but I also knew he would tell me what I needed to hear to make me feel better.  And what will I do when Dan is not here to pick me up at these moments?  When Ed told Dan that I was strong but that this would be hard on me and so he needed to be there to take care of me, I was a bit annoyed--how could he think I needed someone to take care of me?  But now I know Ed knew this best.  For it wasn't in big, loud ways that he picked me back up.  But in small, quiet supporting ways that he helped me when I needed it.  To keep my chin up, to put his arm around me, to say the right things at the right time.  I could always count on that.  And poor Dan will now carry that burden.  But I guess it's not really considered a burden when you do it for someone you love.

The bush after we planted it.  We did pretty good and I think Ed would be pleased.

Daffodil blooming in that same area.

Hyacinths too.  Ed always bought me these for Easter.  I love their smell.


The stepping stone.

Saturday, April 27, 2013

Smiles and Sadness Combined

I know today I should write about yesterday and Ed's funeral.  Since he passed, every day this week our focus has been on preparations for his funeral.  There were things to do and that is what defined our day.  Last night, as we sat alone in the house after visitors left, Dan and I were at a loss in terms of what to do.  There was nothing "to do" and so the loneliness and sadness filled our void.

Ed's funeral Mass and burial was easier than I thought it would be. Now don't misinterpret this, there was really nothing easy about it.  But I thought for sure I would be in a ball of tears all morning.  But instead, the tears came only at certain moments, some poignant, some totally unexplained.
  • When his pallbearers stood at his casket to say goodbye.  There they were--the men who were his friends and his family, who so graciously said "yes" when I asked.  Here they were, together, to bring Ed to his final resting place.
  • When they incensed his casket and the choir sang the "Celtic Song of Farewell"
  • When Fr. Vern, Cathy, and Mike spoke about Ed.  Each one of them said things that made me laugh but also that made me cry.
  • Seeing the plaque on our pew in church--it had all our names "Ed, Jeanne, and Dan Brzycki" and it was in memory of "Brzycki and Jasmin families".  It has always been "Ed, Jeanne, and Dan".
I'm sure I cried more than that but I was amazed at how peaceful I felt both at the church and at the cemetery.  I know part of this is because my church has always been a place of loving support and peace with many friends and so this peace enveloped me as we walked in.  There were many moments of smiles and there should be because we were remembering Ed and he lived a good life and had many friends.  But I never thought I would smile through the service itself but I did and today I am comforted by these moments.
  • Seeing Fr. Vern and Fr. Charles both there.  Fr. Vern has been a friend to both me and Ed for so long and although Ed would never go back to Mass, he had a unique and comfortable relationship with Fr. Vern.  And Fr. Charles being there was so special.  He not only is close to my mother (my mother was best friends with his sister who recently passed) but he also was close to Mary and her family as well.  A connection between our two families.
  • Seeing my choir family and that they took time from their work and day to be there for me.  And they sang beautifully and I thought for sure I would cry with each song they sang, but instead I found loving peace instead.
  • Seeing Mary and my nieces and nephews bring up the gifts.  Special people in my life.
  • When Fr. Vern, Cathy, and Mike spoke...  I am most amazed and touched by Cathy and Mike and that they both found the strength to honor Ed this way.  I know it was not easy for either of them, but they both spoke from the heart and it was beautiful.
  • At the cemetery, the sun shone down and it was a beautiful day.  And I closed my eyes and felt the warmth on my face and then a small breeze would come and I knew Ed was in that small breeze letting me know he was there.  And it was very peaceful and comforting.
  • The many friends and family and the moments and memories we shared.
I think Ed would be pleased with our tribute to him and I do smile when I recall the day.

But his funeral also marked an end point.  We have laid him to rest and now we're supposed to move on, right?  We've got the weekend, but then we get back to "normal", right?  But I still struggle with the basic fact that he is not here.  How can he be here one day and gone the next?  I am a logical person and I know this happens to human life.  It ends and it happens to many, many people every day.  But how can that be?  How can someone be here one moment and gone the next and it's expected that life goes on?  This is what hurts the most.  I have felt the emptiness in the house for four weeks now.  And my grieving began weeks ago, those lonely nights when he was not here.  It's that emptiness that I feel now.  An emptiness that I can't grasp or hold onto.  And the reality that I am not going to the hospital to see him or hold him.  And it hurts so...

But that damn sun rose again today and it is supposed to be another beautiful spring day.  And Dan and I will plant the bush we received from his cousins and we will smile and cry throughout the day for I am blessed and so very lucky to have Dan by my side.

Celtic Song of Farewell

Friday, April 26, 2013

Love and Support

My mind is going in a million different directions this morning.  That might explain why I woke up at 5 am and couldn't get back to sleep.  Did you know that I used to get up at 5:30 am routinely back when life was "normal".  But there has been nothing "normal" about the 4 weeks Ed was in the hospital.  And although sleep was restless early in the evening, I was thankful that I did usually sleep from about 2 am until about 6:30 each morning.  That became my new "normal".

I am trying to find the right words to describe yesterday.  Dan and I had our short list of "to do's" that included mundane things like ironing and laundry.  Mid-day we actually sat and watched a movie.  Nothing worth mentioning, just some comedy to distract us from the world around us.  It was then time for the wake.

The viewing was private.  Ed had very few specific requests but this was one of them.  And as I kneeled next to him and touched him, it was as natural as all those days I sat next to his hospital bed and touched him and held his hand.  But now he was at peace and I was comforted by that because looking at him last night, I truly understood how much he struggled these last couple weeks.  And I will always cherish the last days and weeks we spent together for I know how truly blessed both of us were to have this time.

The wake itself was mind numbing.  I was totally unprepared and amazed at the number of people that showed up.  There was a fleeting moment at the beginning when I thought "what if no one shows up?"  So I was totally unprepared for the continuous line of people.  People who knew me, Dan, Mary, Larry, my family; but mostly people who knew Ed--from work, from Pine Grove, neighbors, players and parents from his coaching days, friends that he knew from everyday living.  Ed would be so amazed and touched by the outpouring of love and support.  They all had such nice things to say about Ed and what a good guy or friend he was and I am touched.

And I am amazed at the number of people who mentioned how much Ed talked about me and Dan.  I always knew, without any doubt, that he loved us.  But I never knew he talked to others so much about us.  And so I find peace and comfort knowing that, not only in dying, but in living every day life, that he knew our love for him and that this brought him such pride and joy.

I know today will be most difficult and I will cry with sadness at what is lost.  But I also know we will laugh as we recall great memories or those small moments that Ed would so enjoy.  And he will be there with us wanting to comfort me and put his arm around me when I am weak.  But I also know he will be smiling and smirking at the funny moments as well.

We will get through this day because we have no other choice.  It is the days that follow that scare me the most...

Thursday, April 25, 2013

It's the Little Things

Once again the sun has risen and another day has dawned.  Life goes on and how can this be when there is a large hole where Ed used to be?  I have always believed the words I told others when they lost a loved one--"they will live on in your memories", "they are always with you."  And I do believe this, but there is this emptiness where Ed once was...a hole in the universe for the space and time that he occupied.  I know that birth is a miracle and now I have learned that death is a mystery.  And the only comfort I can find is that Ed is certainly at peace and with our loving God and we will meet again.

For the most part, Dan and I are doing okay or at least the best we can.  Preparing for the wake and funeral keeps us occupied.  And yesterday we went to the store to pickup some basic essentials and although it felt "normal", the moment would always come to remind me that there is nothing "normal" right now and how could we be going about "normal" things when Ed is not here.  Ed would be proud of us though for taking care of things that he usually did for us.

It was good to be outside yesterday and also to open the doors and windows to let in some of the warmth.  Ed loved the spring.  It meant working in the yard and his flowers around the house were beginning to bloom.  And I have to admit that I found comfort that the days were still cold while Ed was in the hospital and so he wasn't missing anything by not being outside.

What we are realizing is that it's the little things that catch us by surprise--getting the mail and seeing both envelopes with Ed's name and those where his name would normally be included; seeing "record Red Sox opener" or "fix Ed's gmail" on my to do list and knowing that the completion of these tasks were fruitless; noticing that Dan sleeps with his bedroom door open now...  These moments of sadness sneak up on us and hit us when least expected.  But I am soooo thankful that Dan and I are together so that when these moments hit, we can hug each other.  And then I am reminded that we are blessed to have each other and to have these stupid moments because it means that Ed lived and that we loved.

I am so sure that the wake and funeral will be exhausting.  Dan and I both commented last night how tired we were after really doing nothing all day.  The emotional toll is amazing and it has been a very long month.  But life marches on and we'll continue to take it one day at a time.  For what other choice do we really have?



 

Wednesday, April 24, 2013

Edward J. Brzycki Obituary, Belchertown, MA | Beers & Story Funeral Home: Obituaries
Read Edward Brzycki's obituary/death notice, funeral and memorial service information. View images and share memories/condolences for Edward Brzycki from Belchertown, MA.

Cheeese

I'm sitting here staring at a blank screen...what do I write this morning?  I'm trying to think back to yesterday.  What did Dan and I do?  Went through pictures...that's what we did.

Now anyone who knows Ed knows he is not one to smile and pose for pictures.  In fact, he always made fun of me and my sisters on how we could just turn on the smile for the camera.  Tell him to smile for a picture and he'd grit his teeth, turn his head slightly, and say a dragged out "cheeeese" (with a hint of sarcasm).  So as Dan and I went through pictures, we saw plenty of these!  But there were also many candid shots with wide smiles that extended to his eyes reflecting the moment he was enjoying.  There were also the silly poses--if he wasn't going to give you a cheesy-smile, then you'd get a silly face or pose.  But they all were Ed and they all reflected his love for life and for those in his life.

So Dan and I went through many photos and then had to weed them down to select the ones for the video tribute.  We will continue going through these today and assemble a couple photo boards as well.  And it is true, going through photos allows you to remember moments and laugh and smile.  And Dan and I did this.  And there were also tears for what will not be.  But when our thoughts went in that direction, we reminded each other instead to remember and find joy and comfort in what we had.

In particular, Dan and I cherish the memories and photos from over the past three years since Ed's diagnosis.  Since we know and acknowledge that if he was not diagnosed back in December 2009, he would have been taken from us much, much sooner.  So we see the last three years as a gift that we cherish.

The days continue to be long and I don't know how I would do this without Dan.  His father would be so proud of him...

CHEEEESE!






Tuesday, April 23, 2013

Emptiness

I debated whether to post this morning.  But this blog not only kept you all updated on Ed's progress but it provided me an outlet to share my thoughts and feelings.  Yes, it was about Ed.  But it also is about me and Dan and those family and friends who enrich our lives.  So I will continue to post for now.  Because as much as I hate it (oops, there's that 4-letter word again), life does go on.  And I know the pain will lessen with each day and that I will feel the love of Ed in the quiet moments and the gentleness of the breeze.  Right now, though, all I feel is emptiness.

Dan and I were busy yesterday tending to all the necessary arrangements.  At the end of the day, we were exhausted having been up since 2 am, but also the emotional toll the day had on us.  We spent two hours at Beers & Story making arrangements (Wendy Story is absolutely amazing).  Although I didn't tell Ed this, last week I did reach out to Wendy to begin planning and so I was prepared for some of the logistical decisions we needed to make.  But together Dan and I made the decisions from prayer cards to a guest book to the ultimate decision of picking Ed's casket (which Dan was instrumental in doing since he is so attuned to details).  We then went to the florist to order a casket spray where we both acknowledged that this is something Ed was much better suited to.  He knew how to arrange flowers and put the right combination together.  We laughed about how I just tend to stick them in a vase (and it looks that way) while Ed would trim and arrange and combine flowers to make a beautiful arrangement.  We laughed that he was surely rolling his eyes at us at that moment.

When we got home, we needed to finish Ed's obituary.  I had written an initial draft last week since I had plenty of time to think about the things I wanted to include and say.  Dan then took this draft and edited it and refined it.  As Dan pointed out, it has always been me editing his drafts whether it was a paper for school or his resume or a cover letter and now here the roles were reversed.  And he did an amazing job and his ability to pull the information together in a beautiful way warmed my heart.  His Dad would be so proud.

I know I used to post how difficult the evenings were and last night was no different.  But what was different was that this morning was difficult as well.  For, even as recently as yesterday, I would wake and head to the hospital where I would see Ed and hold his hand.  But today, when I woke, there is no seeing Ed and that emptiness is there...in my heart and in my life.

Dan and I have our "to do" list and so we will once again keep ourselves occupied with the busyness of these things.  First off is ordering some edible arrangements for nurses/staff at Cooley.  As Dan noted, this was one of Ed's dying wishes.  And this makes me smile.  For anyone who saw me in the hospital knew I had a small, white notebook which I kept with me always.  This is where I kept notes each day--times things where happening, meds being administered, etc. (those I work with who are reading this are not surprised by this at all).  In this notebook, I also had a section in the back where I kept my "to do" list which Ed knew about.  On Saturday, he asked me where my notebook was (I thought maybe he wanted to write me something--ha!) and then gave me specific instructions to add to my to-do list to order these edible arrangements.  Then he laughed and smiled and rubbed my head and said to me "like you don't have enough to do already".  It is recalling these special moments and sharing them with you, that will help us fill the emptiness.


Monday, April 22, 2013

He is at peace

I am sorry to post that Ed passed last night Monday, April 22, at around 1:25 AM.  My heart breaks but Dan is here doing exactly what his father told him to do which is to take care of me.

Rest in peace my love.  You fought the good fight and now may you rest in God's loving care.  I love you always and forever.

Sunday, April 21, 2013

1,230 Days

1,230 Days...the number of days since Ed was diagnosed with stage iv colon cancer.  1,230 days that Dan and I will cherish.  1,230 days that we never hoped to have 1,230 days ago.

1,230 days later was a very difficult day.  Ed was experiencing severe pain when we arrived in the morning.  He refused his oral medications and did not want to be bathed or repositioned and instead asked for the doctor.  This was all certainly a first for Ed.  Dr. Berkenwald came in and offered Ed various options for pain relief.  We settled on upping his PCA pump and administering an additional dose.

Ed was pretty restless for the rest of the morning and early afternoon I called our hospice team and his hospice nurse stopped by shortly thereafter.  She confirmed the signs that I was already beginning to recognize which included that his kidneys have stopped functioning and he had more congestion and his breathing was labored.  After asking Dan if he wanted to be here when Ed passed, she recommended that he not go back to his apt/work since we were looking at 1-2 days tops.

She asked Ed about some adjustments to help with his comfort--one for his congestion and one for his restlessness.  It was decided to hold off on the medication for the congestion but they did give him Ativan (anti-anxiety) and that quieted him and he slept peacefully for the rest of the afternoon.

Late afternoon there was a change in Ed's nurse and Tara treated him for the rest of the day.  Ed had her earlier in the week and she was terrific.  She did come in and talk to me and Dan.  She has previous experience as a hospice nurse and so was very helpful in explaining what we were seeing/experiencing.  Not only did she treat Ed kindly, but also me and Dan.

Dan and I spent a lot of time holding Ed's hands and talking to him even though he could not respond.  It was a tough decision regarding whether to stay with him for the night or to go home.  Since Ed has been pretty insistent on us going home every night since he was first admitted, we decided to come home.

My greatest fear is that Ed will pass this evening after we left.  But we realize that this may also be what Ed wants.  So we left and we exchanged direct phone numbers with Ed's evening nurse Tim.  Tim was also terrific in terms of helping us assess where Ed was and helping us to decide whether to stay or leave.  Both Tara and Tim helped us understand that this was a personal decision, no right or wrong, but something that we just needed to do together.

Ed is not talking and is quite out of it (and Tara warned us that he may remain this way).  I was able to let him know Dan was staying home (not going back to work right now) and of course Ed's final words had to do with making sure Dan called his boss.

I am hoping that Ed makes it through the night, but if he doesn't, I am comforted that Dan and I said what we needed/wanted to say over the past two days and we have no regrets.  I also know if he passes this evening, it is because that is what Ed wants.

Thank you all for your continued support and prayers.  May Ed rest in peace.

Poignant Moments

Ed had more pain Saturday mostly in his stomach.  He used his PCA pump more than he had in the past which, although it meant he had more pain he was managing, it relieved the pain.  I also know it took a lot for Ed to administer the pain med that frequently because he has always tried to hold off as long as possible even though we all keep telling him it's more important to stay ahead of it.

Of course, with more pain meds, the sleepier he is and I know he wanted to be awake and alert when Dan was there (since he was coming home for the weekend).  This means so much to Ed and I know Monday he will be over exhausted.

Ed didn't eat anything Saturday--just didn't feel like it and he only sipped water occasionally throughout the day.  When I left, he asked for some Powerade to sip but eating and food have no interest to him.  I understand this is natural and so I don't push this on him.  It is about what provides comfort to Ed.  I also know he is worried about the stomach pain and another possible blockage.  I know he hated that NG tube and I asked if it came to it, does he want it again (since it is considered a comfort measure).  He didn't respond and I told him we'd cross that bridge if/when we got there.  It will be his choice.

There was time Saturday early afternoon when Ed, Dan, and I had alone time and Ed was able to tell Dan many things he wanted to say.  It was poignant and special....the opportunity to say all those things you want or need to say.  We held hands, we cried, we smiled...tender, loving moments together.  A couple days ago I worried whether Ed understood the situation and yesterday Ed worried whether Dan understood it.  Ed so worries about me and Dan.  He gave Dan fatherly advise and when I left in the evening, Ed had Dan stay with him so he could give him more.

Ed slept most of the rest of the afternoon and Dan and I just stayed with him.  I love both these guys so much...

Saturday, April 20, 2013

"Hate" is a four-letter word

Friday morning started with me calling our case manager to let her know our decision to transition Ed to inpatient hospice.  I felt bad making this move, like it was raising the white, surrender flag.  I had talked to Ed Wednesday and he agreed this was our next step.  But it doesn't make it any easier.  At 3 PM the hospice social worker came to visit us and I signed the necessary paperwork.  It reminded me of that first day when we went to see Dr. Bowers and stepped over the threshold into the Hampshire Hemotology Oncology--into the world of cancer.  And now here I am signing my name on a piece of paper and stepping into the world of hospice.  I hate it!  But I know where this path is leading and I know my priority is Ed's care and comfort.  But I still hate it!

Of course Friday morning also started with Boston and the surrounding communities in lockdown and so my thoughts turned immediately to Dan.  Thankfully he heard the news on the radio when he woke up, so he knew to stay put and not go anywhere.  At least I know he was at his apartment and safe.  Unfortunately, because the lockdown was all day, Dan did not come home Friday night as planned.  But again, he was safe and that was what mattered most.

Friday also marked what would have been my brother's 52nd birthday.  My sister counted that it has been 40 days since he passed.  Is this number significant?  Like 40 days of Lent where you suffer?  I have no idea.  My sister-in-law also reminded me that today would have been her 39th anniversary but her husband passed away 5 years ago.  I do not like April 19th anymore.

So as my day was starting on such a negative note, when I get to the hospital they had given Ed some solid food for breakfast.  He ate some of the scrambled eggs, a few bites of toast, orange juice, Ensure, milk, and pudding.  I'm happy that he felt like eating.  At lunchtime, he had some tortellini soup (ate mostly the broth) and some mashed potatoes and sipped the Ensure.  Dinner he wasn't interested in at all.

We changed his colostomy bag today and they also drained 1 liter of fluid from his abdomen.  We decided not to drain whatever they can, but instead limit it to 1 liter since this gives Ed some comfort versus draining more that causes more discomfort.

As I mentioned, at 3 PM the Hospice social worker visited and explained things to us and I signed the necessary paperwork.  Ed mostly listened since he doesn't have his voice.  Soon thereafter, the hospice nurse came in to see us.  Both very nice woman.  The nurse, Jill, checked Ed's vitals and I left the room so that she could talk to him.  I didn't really know what Ed understood at this time.  We hadn't talked about it in days and I wasn't sure he understood how much time he had left.  Although I don't know all they talked about, she did let him know we were talking days/weeks and that his body is preparing itself.  I know it makes him sad.  And I hate (there's that word again...a word I don't usually ever use) that he has difficulty talking because I want him to share his feelings with me or with others.  Which I laugh about as I write because Ed is a typical man who doesn't talk much about "feelings".  So I don't know why I would expect him to change now.

So I'll cherish these last "days/weeks" and be by his side and be sure he knows how much I love him.  And although there are times I don't want to go on without him, I know he worries about me and Dan and so I will let him know I will be alright because that's what I need to do for him.  And that's love which is much stronger than "hate"...

Friday, April 19, 2013

Unsettled Days

Thursday was a better day for Ed.  My mother went to be with him in the morning so I could get things done around the house.  If he was awake, she would call me...but she didn't call and he slept for the first few hours of the morning.  Of course when I arrive, he's sitting up in bed, looking through the newspaper and had just finished a Gatorade (thanks, Mike L.).

He continued to rest throughout the day and the nurse asked him about getting up into a chair which Ed had no energy for (or interest).

He sipped more clear liquids, definitely more than Wednesday when he barely had anything.  And he tried a little bit of applesauce.  He had some abdominal discomfort but took some more pain meds which helped.  They have Ed on a PCA pump with a low-volume of continuous pain med being administered and then Ed can push the button to get an additional dose.  He hesitates to push the button but when he does it does relieve any pain or discomfort he has.  Of course, last night he had a dull headache and so they gave him some Tylenol for that.  As Ed said, he's on all this pain med how in the world can he have a headache--but I guess the pain meds can cause that.

They drained some fluid from his abdomen since he was experiencing discomfort.  Instead of draining all they could, we limited it to just 1 liter.  If they need to drain another liter today, we can do that.  (Sometimes draining too much can cause discomfort as well.)

When I left Ed last night, he was comfortable and had just turned on the TV to watch some Red Sox.  I don't think he really watches it, but it's noise which hopefully calms his mind.

As I write this, my thoughts are going in many different directions as well.  Of course, my every thought is with Ed and his care and comfort.  Today my thoughts are also with my brother Michael whose birthday is April 19th.  He would have been 52 today.  My sister Cathy shared with me shocking news about a friend of hers who was suddenly air flighted to Hartford due to an aneurysm.  She has two young children and so I pray for her and her family.  As terrible as I feel my situation is, it reminds me that others have it worse and this is a younger woman with two young children.  So I pray for her recovering as well.  And then this morning I wake up to see they are hunting down the second bomb suspect in Watertown, right next to where Dan lives in Waltham.  As my own life is unsettled, this week has been like hell for so many.  I cannot wait for it to end.  Hoping the weekend brings peace for many.

Thursday, April 18, 2013

Sleep is a comfort

Sleep is a comfort both for Ed and for me.  Ed slept most of yesterday and was only awake for very short periods of time--when they bathed him, turned him in the bed, or to take a few sips of something to drink.

His longest waking moment was in the morning yesterday when he decided he wanted to shave himself.  He definitely needed one (it's been over a week) but had no interest in doing so until now.  It's just another sign at how proud he is of his appearance. He also let me trim his fingernails Tuesday.

But the rest of the day he slept.  Doctors, case managers, visitors came and he slept through all of it.  He still wants me with him though and so that is where I will be.  Dr. Mackey ordered Ensure for him to sip on and he took a couple sips mid-day, but that is it.

In the meantime, I continue to work with doctors and case managers to determine his "discharge" options while at the same time I pray that God will take him soon to end his suffering and so he can be at peace.

Sleep is a comfort for me as well.  The day is full of "tasks"--caring for Ed, dealing with the doctors, nurses, case managers, etc.  The plethora of people coming in and out of his room.  And when I get home at night, I miss Ed terribly and it's only after sleep comes that I get any rest even though I wake often during the night.  And I'm so sad and angry and then try to focus on how lucky and blessed we've been and that there are many others who suffer this or worse.  And that we're not unique in our situation and that there are many people who have lost loved ones and life goes on.  And I don't understand God's plan but I also cherish this time Ed and I have together and that Ed will pass knowing that I was there by his side providing love and comfort to him.

"It is better to have loved and lost than to never have loved at all..."

Wednesday, April 17, 2013

Three Weeks Later

Really?  It's been three weeks since we called 911 and Ed had emergency surgery?  I'm not sure if I feel like three weeks is a short period of time or a long period of time--it just is a marker of time.

Yesterday morning, Dr. Tassoni (from the GI team) came in to see Ed.  He reviewed the xray and listened to Ed's stomach and believes the bowel is moving and there is no blockage.  He recommended that we take the NG tube out.  Ed and I were comfortable with this since they had clamped the tube on Monday and Ed continued clear liquids without any issues.  So mid-day Tuesday, the NG tube came out.  We are now monitoring his progress on clear liquids and then we may try soft foods (such as applesauce).

Ed slept quite a bit yesterday.  He said he didn't sleep well Monday night so that I'm sure contributed to his drowsiness.  He also just has no energy which is understandable.

We continue to work with social workers and case workers in terms of preparing a discharge plan.  Although we need to review our options and plan accordingly, our first priority is to stabilize Ed medically.  Dr. Mackey came in later in the day to review Ed and said that we just need to see how he does without the NG tube.  Not having it does change discharge options (some facilities are not equipped to handle it).

So we'll see how he does without the NG tube and continue to get his stabilized.  In the meantime, I'll continue to work with our case managers to review our options for discharge if/when he's ready for that step.

Tuesday, April 16, 2013

What goes up must come down

I was semi-prepared for Monday.  Since Sunday could be considered a "good" day I was semi-prepared that Monday would not be as good and that turned out to be true.  When I arrived Ed was quite tired and there was no thought of getting out of bed.

I asked to talk to the doctor (Dr Mackey for this week) since I came to the realization that Ed is getting no nutrients and hasn't been for several days.  I also wanted to understand what we were doing with the NG tube since this was really irritating Ed's nose and throat (it's the biggest source of discomfort right now).  Dr. Mackey ordered an x-ray to see if there is still a blockage and also put Ed back on an iv drip.  Dr. Z came by to see us late in the day to report that the x-ray showed signs that the bowel is still not working.  However, to confirm that, we agreed to stop all liquids for 12 hrs (overnight) and then they would drain his stomach through the NG tube in the morning.  A GI team will also be consulted in terms of whether we should consider administering any nutrients via an IV or inserting (another) tube in his stomach (to replace the NG tube).  I have to admit that I'm having a hard time keeping everything straight such that I can repeat it here.  However, I'm glad they are at least doing something to at least stabilize Ed and/or provide answers to outstanding questions.

We also had another frustrating day in terms of discharge and insurance.  I have decided to let the case manager deal with all this because I have no energy to jump through these hoops.  But as she was going through options, there supposedly was not a single one that would be totally covered by our insurance which just baffles me since I've been told we have good insurance.  And as she's explaining it, because of wanting hospice, some things are no longer covered.  I am just totally perplexed because I hear people talk about such wonderful things about hospice and now I'm being told with hospice things that were previously covered are not any longer.  And the case manager comes in with an answer to one option and expects me to jump all over it without information about the other three options we discussed.  Of course I talked to Dr. Z and Dr. Mackey about this.  It's just crazy and I can't believe I even need to be dealing with this.

Now don't get me wrong, the nurses have been great and they take good care of Ed.  It's the business side of this that is ridiculous and I wonder why I even need to deal with this.  But this is where I can apply my "business" skills and attempt to manage this aspect of Ed's care.  My goal and priority is quite clear and that is to provide Ed with the best care and comfort at this time.

Ed's body is failing though and I pray that God does not drag this out too long.  It has now been 3 weeks and for 2 weeks we had a different goal.  I know the end is near and I'm sad and heartbroken.  I just want Ed to stop suffering.  He is such a proud man and to know his body is failing him and that he is weak breaks my heart.  But I will continue to fight for him and what he needs at this time to be comfortable and know I love him.

Nights are the most difficult for me.  Days are full of things to do--caring for Ed, dealing with doctors and case managers--but nights are lonely and the house is empty without Ed.  For those of you who have had to go through this yourself, I know you came through it and I know I will as well although there are times I have doubts.  But we grieve and we hurt because we love and if I focus on that love that Ed and I shared for 30+ years, then I can smile and be thankful for that.

Monday, April 15, 2013

"It's like Thanksgiving in an 8x12 box"

Today's title and quote makes me laugh because that was Ed's comment yesterday when we had several of us coming in at once to visit him (me, Dan, my mother, my sister Marion and my sister Cathy) and a couple nurses/aides trying to get him settled in a chair.  It was a bit chaotic with us all milling around, finding chairs, getting settled and then Ed comes out with this.  It certainly made us all laugh and nice to know that he still has his sense of humor.  In fact, he was doing quite well giving his nurse Laurie a hard time (only in fun) and she was giving it right back!  It was good to see the joking and laughter.

And, yes, they did get Ed out of bed into a chair which was great to see.  He did really well without any blood pressure drop and sat in the chair for about 4 hours.  The only reason he had to go back to bed was that sitting up causes the fluid to begin to drain from his stoma area.  Since it had been several days, I was hoping that it would no longer "leak" from here, but it did and it got to the point where they had to drain the bag every 30 mins.  So it was back to bed to slow the flow and to drain his abdomen.  Total fluid from the colostomy bag and from the PleurX was about 4 liters.  Damn...I was hoping the amount would go down!

Of course, I will need to talk to the doctor today because I'm not quite sure what all this means other than he's outputting more fluid than he's taking in.  He still has the NG tube in and whether that comes out or not, we're not sure.  That is our goal, but we're taking it one day at a time.

Sunday was also quiet in terms of possible discharge and where Ed would go since most folks were not working.  I'm sure today will become crazy again, but we have been advised and will follow this advise to not feel pushed or rushed into any specific direction.

Dan did return to work/Waltham late yesterday.  As much as I know he wants to be here, he needs to keep working.  He's only been at his job for 4 months and doesn't have any accrued time.  Plus Ed also feels strongly that he do this.  But thankfully he is only a 1.5-2 hr drive away.  I do sleep much better when he's in the house though.

Thank you all for your advise and prayers and support.  I know many of you offer to help in whatever way we might need and I appreciate that.  Right now it's prayers for comfort for Ed and strength for me and my family.  I am saving up all your offers knowing that if I need to, I can collect on them in the coming days, weeks, or even months.  For although this journey right now is difficult, Ed is still with me and so there is a level of comfort and support I am getting from him.  But I know this time is limited and when his time here on earth ends, I'm sure that is when both me and my family will need you all the most and I will call upon you then if that's the case.  So although I'm not taking you up on your offers today, I know you're there and will call upon you if and when the time comes.

For now, though, it is just your thoughts and prayers that we need.

Sunday, April 14, 2013

Questions, concerns, frustrations...

As I look back on the last week, I question how we ended up so swiftly where we are now.  I know Ed was tired and struggling last week, but he was working to get up and walk and sit in the chair.  And he was eating solid food.  I look back and see that it was only Tuesday morning that we were so excited that he walked into the hallway.  And then we made the swift move to Elaine and there were anxieties and frustrations and then the blockage and off to the ER.  Would the blockage still have happened if we just stayed put for another day as originally planned?  I don't know...probably, but I know I have an open question about that.  I know regardless it was not going to change Ed's prognosis, but here we are with Ed not even able to get out of bed, with an NG tube and only eating clear liquids.  I know I will forever question whether if I had put my foot down and said we were not moving to Elaine until Wednesday as originally planned whether it would make any difference in terms of where we are today.

Yesterday morning Dan and I did go visit Fisher House and they took our information and will check on insurance coverage.  We know the insurance will cover the hospice care, but it most likely will not cover the room/board which runs about $350/day.  Ed if very concerned about not doing something that will hurt us financially.  Our ideal would be for Ed to receive hospice at home; however, with what he needs due to the ascites and not being mobile, he needs more nursing care than I can give him.  Any additional nursing care we would need to pay for, so again, there's that out-of-pocket expense that Ed does not want.  We are also seeing if going back to Elaine is an option.  Ed would want a private room and we could receive hospice there.  Another option we discussed with our case manager was the possibility of staying in the hospital and receiving hospice care there.  Again, if Ed can't be home, then he wants the option that is least expensive for us.

Of course our frustrations ran high yesterday as well.  Soon after Dan and I arrived, a nurse bops in and annouces that Ed may be discharged today (she's so happy!).  Needless to say, we were all very perplexed since we haven't settled on where he was going.  Thankfully I had just left Fisher House where I knew they were not able to check insurance until Monday.  So this time, I clearly said "I don't think so".  Needless to say, this got Ed all worked up--here he goes again, feeling shipped off somewhere.  Thankfully our case manager was on the floor and she came in to talk to us.  With Ed's permission, my mother and I went outside the room to talk to her.

Chris (our case manager) shared where she thought we stood and what she understood our priorities and options were and the good news is that she was aligned with us.  She was clear that no bed was secured anywhere and there was more follow-up still needed and for someone to come in and tell Ed he was being discharged was not right.  We definitely where aligned in terms of what needed to be done next and she also came up with the additional option to pursue of Ed remaining at Cooley and receiving hospice care here.  I communicated to her and to Ed's doctor my unhappiness with the fact that "they" were causing this additional angst for Ed.  He doesn't need this.

There were other things throughout the day such as miscommunication about a PCA pump.  On Friday, we agreed with the doctor that we would try this.  On Saturday when I was there, the nurses were saying Ed "decided he didn't want it" which was totally untrue.  Of course, while talking to Ed's doctor (Dr. McCracken), she experienced this miscommunication first hand when the nurses came in and were contradicting when she just told us.  And it happened again later in the day regarding draining his abdomen.  When Ed was sleeping the nurse talked to me and thought Ed was confused about the situation and I explained to her that they were confusing all of us, including me!

I am just thankful that I am there and can be there to keep track of all this.  I just can't imagine if Ed was alone and had to advocate for himself in his condition.  And I know we have lots of cooks in the kitchen--Dr. Z, Dr. Bowers, Dr. McCracken, and our case manager and then many nurses.  Also, since Ed is in a "regular" unit now, the nurses change shifts every 8 hours (versus 12 hours as they did in critical care) so there is less continuity as well.

So I'm hoping today settles down a bit.  We'll see.

Saturday, April 13, 2013

Looking at Hospice Options

I am sorry I haven't written.  However, until Dan came home last night and I could talk to him in person, I was limiting my posting on the blog.

Thursday, Ed stayed in the cardiac telemathy room where the NG tube remained in and they gave him medication to ease his pain.  He is very lucid and is very aware of everything that is going on.  The level of pain meds is just enough to keep him alert while also keeping pain at a manageable level.  Dr. Bowers approved Ed receiving pain meds every 15 mins if he wanted them.  Ed told the nurse this and she didn't believe him.  Then she read the report and saw that Ed wasn't joking.  Ed is working with his nurse though to identify the time frame that is right for him though.

On Wednesday while Ed was in the ER, we discussed with the doctors doing a CT scan which would show if there was a need for another surgery.  Ed decided, and I agreed, that he was not going to have any surgery--that his body would not tolerate it and he would not survive it.  The doctors agreed and so we decided against any CT scan.

Thursday Ed and I had some quiet time together and discussed talking more to Dr. Z about hospice options and decided we would do this on Friday.

Thursday night they moved Ed from the cardiac ward to the regular medical/surgical ward (3 North, Room 309).  This was a good thing but it concerned me when I showed up at his room in cardiac on Friday and he wasn't there!

Friday morning I made some phone calls to gather some basic information about hospice and insurance coverage.  I also called work and let them know that I will be "out" and not working for now.  I had been trying to juggle both and at least attempting to put some hours in even working remotely.  But after Wednesday I knew my priority was Ed and that work was not getting the attention I told them I was hoping to give.  Ed was very concerned about this--he worries about me keeping my job--but I reassured him and it wasn't false reassurance.  The folks at work have been great and supportive and I am not really surprised but it is reassuring that I do not need to worry about that right now and can focus on Ed.

Ed and I did meet with Dr. Z.  Of course Ed would like to come home, but his biggest concern is being a burden to others and being sure insurance covers things so I'm not left with some financial burden.  So we discussed home hospice but this would require a fairly regular home aid.  We also discussed Fisher House (who I have to call back this morning) where hospice services will be covered but the room/board may not.

We also met with Ed's attending physician, Dr. McCracken and I told them both that we need them to be straight.  Ed's liver is failing and he is becoming jaundice.  His time is soon (days/weeks).

Please pray for Ed's comfort and that we make the right decisions and that things fall into place so Ed does not need to worry about the logistics or being a burden.





Thursday, April 11, 2013

That darn roller coaster again

Well I was hoping to tell you all about Ed's move to Elaine, but unfortunately that was short lived as he had to be transferred to the ER Wed afternoon.  He began to experience severe abdominal pain even with being on pain meds.

After about 9 hours in the ER (although most of that time was waiting to be transferred upstairs), he was admitted. They believe it is a blockage in his intestine. In addition his fluid levels are low and his potassium is high. As a result, they have inserted a NG tube and they have him in cardiac telemetry.  I left the hospital around 1:30 am once they had him settled and was back at 7:45 so I could be here when the docs made their rounds. So today we're watching and waiting and then we'll determine our next steps.  Ed and I have already adjusted his next goal which is simply to avoid the pain he experienced yesterday.

I will continue to keep you posted...

Wednesday, April 10, 2013

Going for a ride...

Priscilla and Brown Bear
Priscilla and Brown Bear, who have been with Ed in Cooley Dickinson Hospital, took a ride today to Elaine of Hadley!  And, yes, Ed joined them and is there tonight and he was going to sleep for the night when I left.  Hallelujah!  Goal #1 achieved!

Yes, the last two days have been tough and the move to Elaine was swift and a bit rocky, but it was Ed's goal and he achieved it (and we got into the rehab facility we wanted).  So I'm sure over the next few days I'll tell you all the things I don't like or are a problem, but for this moment, I'll enjoy this momentous occasion.

This morning was a fairly good morning for Ed (except that they forgot his breakfast which is never a good way to start your day).  But he woke with energy and even more exciting is that he did great with physical therapy.  He did the leg lifts while in bed, got himself into a sitting position, and then walked beyond the red tape, through the door, and into the hallway!  Unbelieveable.  Of course, he was a bit tired after that, but all-in-all it was great!  I know...in total contrast to yesterday.

I left for work mid-day and so I fully expected the "bad" part of our day to then begin.  While I was away, they did drain 3L of fluid, so that is not slowing down but Ed felt less "full".

The crazy part of our day was at 3:30 when Matt came in to tell Ed he was being transferred to Elaine.  I was at work still but my mother and sister were with Ed and my sister called me right away and so I returned to the hospital right away.

We were quite surprised by this because as you may recall, a few days ago we were told 3 more days in the hospital, so we had Wednesday in our minds.  But now they were saying he's ready to go.  Now there were really no major reasons why we had to wait until Wednesday (except this felt sprung on us this afternoon) and we definitely didn't want to wait and risk losing the bed at Elaine.  So we decided to do it.  Of course there was still the question about the staples on Ed's incision.  Dr. Marvelli did not remove them this morning because he was told Ed was not being transferred until Wed so he was just going to wait until Wed.  Matt ended up taking them out (28 of them).

And we were also told the ambulance would be there at 6:15 to transfer Ed.  Well, I think it was more like 7:15 before they arrived (hospital time is so different than real time).  However, we were forgiving of the delay because Christina (Ed's nurse the first day) was on duty tonite and she came down to give hugs and say goodbye before we left.  So that made sitting around and waiting worth it.
 
Once we arrived at Elaine, though, there were some issues which I'll bore you with tomorrow (hopefully they all will be resolved by tomorrow so my perspective will change).

So today can be categorized as a "good" day overall.   Thank you for your thoughts and prayers.

Next goal:  For Ed to walk (at least more easily and further than 10 ft).

Tuesday, April 9, 2013

Tiredness

Monday was not a good day for Ed.  He is tired and has no energy.  He forced himself out of bed for dinner but only walked enough to get to the chair.  He is trying to eat although nothing appeals to him.  They drained another 3L of fluid from his abdomen late morning.  Of course, the more fluid that is removed, the more proteins are as well.

It was an emotional day as well as we talked to Dr. Bowers, Matt (NP), and Dr Zesiger (palliative doctor) at various times throughout the day.  Everyone there seems to really like Dr. Z...I can see why and the same level of comfort we found with Dr. Bowers, we recognize in Dr. Z.

The swelling continues to go down...really just in his ankles and feet now.  But Ed is discouraged by the loss of muscle tone.  Like I care...

We did not talk about moving to Elaine on Monday.  The fluid is still infected and the infectious disease specialist was consulted in terms of antiobiotics.  His liver continues to work hard but is failing.  So we continue to take it day by day.

Ed did try to watch the Red Sox opener but with the parade of doctors and nurses, he really didn't see much of it.  I think they won...

I have to say, though, the nurses have been tremendous.  And you know you've been there too long when you get to know all of them.  And for them, they typically see patients move in and out in a few days, so Ed has been a great source of education for the wonderful student nurses who work there as well.  And since they usually only work one day a week, it is rare to see the same patient again.

Today is another day.  May your prayers today be for comfort for Ed...



Sunday, April 7, 2013

"One Step Forward Two Steps Back"

That's how Ed saw today...although I corrected him that it was more like 1 step forward, 1/2 step back.

Today started as a good day.  Ed worked to get out of bed twice again today.  This morning he lifted himself to a sitting position, stood, and then walked further than he has before--across the red tape on the floor and towards the door.  This was a major accomplishment!  We were so excited to see him lifting his body and walking this distance.  He spent a couple hours in the chair and had his lunch there.

While sitting in the chair, his colostomy filled pretty quickly with fluid--it was abdominal fluid leaking from around the stoma.  Earlier in the week, this was leaking from his incision and the stoma area.  Thankfully there didn't appear to be any leakage from the incision today.  We hope that means there has been enough healing in that area so it doesn't happen.  They then got Ed back to bed to drain fluid to relieve the pressure.  Total for today was 4 liters.

Just before dinner, Ed decided to try to get back up, walk a bit, and get into the chair for dinner.  He did a great job getting himself into a sitting position.  Unfortunately, when he got up his blood pressure plummeted.  He did make it to the chair, but it took a good 45 mins for him to feel better.  They administered Albumin and a bag of saline to help replenish fluids he lost.  This was a very down time and Ed was very discouraged.  He also lost his appetite and didn't feel like eating.  But, even though discouraged, he forced himself to eat some of his dinner since he knew how important that was.

A couple hours later he returned to bed and they drained his colostomy bag which was beginning to fill with fluid again.

This just sucks...no other word for it.  When his blood pressure plummeted and he felt awful for about an hour, it was a low point for him...very discouraging after a good morning.  And we're concerned that the fluid is still accumulating quite a bit such that it begins to leak from his stoma area.

Ed and I will have a meeting tomorrow with a doctor from the palliative care team.  Matt, the ICU nurse practioner, talked to me about this today and I asked him to set this up.  I mentioned it to Ed and I think he understood it at some level.  This is a difficult step to take and just reinforces the inevitable.  But I'll keep my chin up and we'll learn more tomorrow.  As I understand it, this support will be critical as we continue our journey.

At this point, they're saying three more days in the hospital and then hopefully to the rehab facility.  An infectious disease specialist is supposed to be consulted.  Plus we need to consider the volume of fluid he is producing.  Elaine of Hadley does have a hold on a bed for Ed.  Let's hope they'll hold it a few more days.

I'm trying hard to keep my spirits up the best I can for Ed.  But the sudden unexpected down points are reasons I spend my day next to his side.  We're trying to find a balance and I'll try to continue to work some hours each day.  Ed is hoping once he's at Elaine, that will be more convenient for me and we can work out a better schedule.  Right now, though, that is hard to plan for and Ed is my first priority.  But leave it to Ed to worry about what is most convenient and best for me.

We have agreed that our ultimate goal is for him to be home.  We cannot predict when that would be and what his condition will be when he returns home, but there is no disagreement that this is what we want.

First step though is getting to rehab.  I just hope we can slow down the amount of fluid that is accumulating.  We can fully handle a liter a day, but 4 liters and leaking from his stoma area is of concern.

And the beat goes on...  Please keep praying for improvements...



Saturday, April 6, 2013

Count it as a good day...

Although I'm cautiously optimistic, I would rate today as a "good" day.

When I arrived, Ed was having some pain in his right side where they had inserted the catheter.  Early afternoon they checked that out and the area was a bit inflamed.  They gave him Ketorolac to relieve the pain and it seemed to do the trick and Ed was much more comfortable the rest of the day.

Ed's big accomplishment today was that he got up and out of bed twice today.  Both times he walked a little bit (pushed himself further each time) before getting into the chair.  He was able to eat both lunch and dinner while in the chair (how much nicer that is).  And with each move to/from the bed/chair he did so with a bit more strength and energy.  I know he pushed himself to do this and I'm so proud of him since I know it wasn't easy.

They did drain his abdomen again today (this will be a daily event for now) and removed 3 liters of fluid.  The swelling in his legs is going down as well and this is helping Ed psychologically as well as physically with trying to move.

Dr. Marvelli stopped in again this morning and said that Ed wouldn't be going anywhere this weekend.  Ed's Nurse Practitioner for this weekend, Matt, also talked to us this afternoon and explained that they need to monitor the fluid and keep an eye on infections and adjust antibiotics accordingly.  He mentioned that they may get an infectious disease specialist involved.  He also mentioned that Ed's white blood cell counts were down (almost normal in fact) which doesn't make sense since this is usually high when there's an infection.  Regardless, until they feel Ed is stable in this area and they know exactly what antibiotics they should be administering (and being sure they know how Ed reacts to any change), Ed would not be going to rehab.  Matt was thinking it would be a few days.

Ed and Dan watched the Red Sox this afternoon and then they watched one of the NCAA final four games this evening.   Ed's spirits were better. I would attribute this to the fact that the swelling is going down and he is able to walk more...and the fact that Dan is home.

So overall a good day.  Good vitals, good progress...  Just being cautiously optimistic since I know tomorrow can easily not be as good.  But we'll take today and be thankful.

We are hoping Ed gets into Elaine in Hadley for rehab, so please keep your prayers coming with our next goals being for Ed to stabilize and also for Elaine to hold a bed for him.

Onward...

Friday, April 5, 2013

What Day Is It?

I wish I could come up with fancy titles for these entries.  We are beyond the point of counting days from surgery (I gave that up last week).  Sometimes titles come to me...other times they don't.  Hence, some posts are simply titled with the day/date.

As I write today's summary, I'm sitting with Ed in his hospital room. He's watching the Red Sox again (which is a good sign since he loves to watch them) and I'm on my laptop...pretty much what an evening at home might be like.  I would normally leave around now since Ed is settling in for the night  (really, "normally"...how sad that this is now a "norm").  However, Dan is on his way so he can be home for the weekend.  He's driving straight to the hospital so he can see Ed tonight.  Now there's certainly a bright spot in our day!

Speaking of which...  When I got here this morning, the PTs had gotten Ed up and he was sitting in the chair.  The first thing I noticed was that the swelling in his legs had gone down considerably!  Yeah!!  Yes, there is still some pretty good swelling, but certainly much better.  And Ed said he had taken several steps with the walker to get to the chair.  It was slow, but he did it.  So more progress there as well.  Dr. Marvelli also said the wound looked good and is beginning to heal so the wound vac was removed.  Our day certainly started out brightly.

However, brightness can only last so long.  At lunch time, Rob (our PA) came in and stopped Ed from eating anything.  There was still concern about the fluid that was continuing to accumulate in his abdomen and so they wanted to insert the PleurX drain.  This could be done with local anesthesia but he couldn't eat anything.

If you recall, two days ago I said that they couldn't insert the drain if there was an infection and they confirmed the fluid was infected.  That is still true--that is not ideal.  However, Ed basically needs to be drained daily otherwise his wound will not be able to heal.  With the regular draining and antibiotics the hope is that eventually the fluid that is drained will no longer be infected and once that happens and his wound is healed, the infected drain can then be removed.

Did you get all that?  Yes, it is confusing.  But it was consensus that we needed to get the fluid out and keep it out and this was the only option.  Solve the predominant problem first.  So at 4 PM we headed back down to Interventional Radiology in the basement at Cooley to see Dr. Gates.  I was able to wait down there (where there is no cell service, but good wifi) while Ed went in for the procedure.  They had told me it would be about 30 mins (10 mins of prep, 20 mins for the procedure) and 40 mins later they came out to tell me he was doing fine but they were still draining fluid.  At about 5:15, they finally were done.  Dr. Gates had guestimated before they started that they would probably drain about 2 liters of fluid (since they drained about 3 liters two days ago).  Well the magic number?  6 liters of fluid!

And, Dr. Gates could not insert the drain horizontally where she wanted so after about an hour, she wanted Ed to stand up and walk some (yes, I know...he's not walking) so that the tube would move lower in his abdomen.  After dinner, Ed was able to sit up--which was very difficult and he felt very light headed, but continued to push himself to at least stand (walking was definitely not going to happen).  After laying him back down in bed, they then drained an additional 1+ liter of fluid.

Now if you'll recall, a liter of fluid is about 2.2 pounds--so that was about 15 lbs of fluid!

While all of this was going on, our case manager was working hard to now find a bed for Ed where the wound vac was no longer needed but they now needed to handle the PleurX.  She was working with facilities in Amherst and Hadley (which are most convenient) as well as one in Northampton, Leeds, Greenfield, and West Brookfield.  If the Amherst and Hadley ones don't work out, next choice would be Northampton or Leeds.  What a job though--some don't have a bed for a male patient, some don't accept our insurance (hard to believe since it's good insurance), some don't support PleurX, etc., etc., etc.  Originally they thought he might be ready today, but with the procedure for the PleurX, that certainly was no longer feasible.  So it could be sometime over the weekend.  We'll see.  We're both excited about making this step in the right direction, but we're also nervous.  The doctors, nurses, and specialists here at Cooley have been great and Ed has gotten tremendous medical care.

We'll see what tomorrow brings.  We're hoping this drain helps keep him "dry" and that we can battle any infection that sticks to the drain.  We also hope the swelling continues to go down so he can work on walking and moving around more.

So please keep the prayers coming and have a good weekend.


Thursday, April 4, 2013

Thursday, 4/4

As promised, I went over to be with Ed in the morning.  Although today was less stressful (at least for me), it was busy.  It's amazing to me how hard it is to keep track of time and I can look up and several hours have passed.  Throughout the day I am making notes to keep track of things.

Our case manager, Chris, stopped by this morning.  She is still looking for a bed in rehab for Ed.  She's hoping to secure one at two of the in-service facilities in Hadley/Amherst.

Carol, one of the wound ostomy nurse, was in next and spent some time checking Ed's wounds and tending to those.  She identified a couple pressure ulcers on his buttocks so tended to those and implemented a strict schedule for rotating Ed and keeping him on his side.  She also identified a small leak on his right side which we could not figure out from what.  But a small amount of liquid was leaking out.  The leak seemed to be less later in the evening.

Ed did a good job eating his breakfast and then his lunch.  After lunch, the physical therapists came to get him out of bed and into a chair.  This took a little bit, but Ed did a good job of getting into a standing position and then getting into the chair with the help of a walker.  They had him sit up straight, feet on the floor, for 30 mins and then he could recline for 30 mins.  But no more than an hour in the chair (per Carol).  As difficult as it was for Ed to move, it was very good for him to stand for a bit and use his legs and feet.

Ed did experience a great deal of pain when they put him back into bed.  Looking back at my notes, I could see that his pain medication was wearing off at that time.  Rolling him to the opposite side two hours later was thankfully less painful but still sapped a lot of energy.

Rob, our PA, came by to see us to report on Ed's condition.  Said that the fluid from the abdomen was infected.  No cultures had developed yet but they would wait another 24 hrs.  In the meantime, antibiotics are being given.  If there are other specific infections they will changeup the antibiotics accordingly.  They are also continuing diuretics to help reduce the swelling (while not stressing the kidneys).  As Rob said, it's a slow process because he's pushing the kidney to work hard, but doesn't want to push it too hard and cause damage.  Once Ed is off all IVs and both the antiobiotics and diuretic can be administered with oral meds, he can be released to rehab.  Rob thinks this might be in about 48 hrs!  So now it's just a matter of our case manager finding a bed for him!

Ed then had some dinner which is good since it's so important for him to eat and get some protein into him.  Another roll to the opposite side and when I left he was resting comfortably watching the Red Sox game.

We'll see what tomorrow brings but please keep sending the prayers.  

Wednesday, April 3, 2013

I Never Liked Roller Coasters...

Last week, I tried to define each day as either a "good" day or a "bad" day.  That was going to be my gauge on this journey.  But unfortunately, what I realized today was that I cannot define this at the "day" level.  Instead, the day, like today, just "is"...and throughout today there were some "good" moments and then there were some "bad" moments.  Some describe this as a roller coaster and I would agree, my day--hour-by-hour--is a roller coaster of good and bad.  I try to be strong for Ed.  I try to keep a clear head and take many notes and apply my logical thinking and problem solving skills to help us make informed decisions.  But then I get smacked up side the head when I look at Ed laying in that hospital bed trying to battle all that is happening to his body.  I will be strong for him and I will find comfort and support from the many friends and family who are there to help and there to pray.  And I will ride this roller coaster as long as there is still some good mixed in with the bad, since I don't particularly care for the alternative.

So now that the emotional part of me is done writing today's intro, let's get down to facts about our day.

I attempted to go into the office today and, in fact, it was good to focus on work for a period of time.  That was, of course, until I got to the hospital and they were sharing "bad" (there's that word again) news with Ed and really needed me there.

Okay, sure, the doctors wouldn't call it "bad" news.  Rather, they are still concerned about the fluid in his abdomen which could be infected and is also preventing the wounds from healing.  So they wanted to put in a drain.  Dr. Gates came up and explained all about the drain (PleurX) to us--how it's inserted, how to drain it, etc.  After an ultrasound and the fact that you can't put in a drain if there's an infection, we agreed to have them draw fluid for analysis and while they were at it, also drain about a liter of fluid to help provide some relief.

Of course, I won't get on my soapbox about who knows what would have been done if I didn't press them to move in one or the other direction.  The fact was that Ed wasn't allowed to eat or drink anything after breakfast in case they did the procedure and now here we were at 3:30 PM and still no definitive answer.

So once we got things moving, they brought Ed down to Interventional Radiology where Dr. Gates and her staff ended up draining about 3 liters of fluid (which equalled about 6.8 lbs).  The liquid was "thick and icky" so it likely infected, but we will know more after testing.

We were then back up to Ed's room around 5 PM.  It was quite a busy and emotional day.  Needing to determine if he would have another surgery to put the drain in, then needing to move him to/from his bed to a stretcher for the procedure.  Then on top of that he hadn't eaten or drank anything since breakfast.  So it was a very draining day.

Good news is that the swelling in his legs is going down very slightly, but it went down.  Also, he didn't have any pain meds all days--went from 8 AM to 8 PM--which is quite amazing when he was getting them every 4 hours just yesterday.

Still concern about the liver and will watch the fluid accumulation in his abdomen.  He's already on antibiotics so by draining the fluid we're hoping it will be more effective.  Analysis of the fluid will also help to pinpoint appropriate antibiotics.

And the craziest thing is that on top of all this, we have a case manager coming in asking us which rehab facility we prefer and she's trying to secure a bed for Ed at one.  Like I even have a clue when he'll be able to get out of the hospital.  Whatever...I guess everyone has their job to do.

I will be back with Ed in the morning...too many curves in the roller coaster right now not to be together.

One day at a time...please keep up the continued prayers...

My Story

Lately I find myself moving through the days, being with others, laughing, and living life. Days pass quickly and grief, sadness, and feelin...