First year of grief - don't think year two will be much better!

Many people refer to the date of their loved one’s death as an anniversary. I can’t bring myself to do it. It actually makes me cringe every time I try to say it or explain what September 26th means to me. The word “anniversary” has an intended association with joy, celebration, and happiness, so why would I want to acknowledge the loss of Tom with this word?
None of us ever imagined having to say good-bye so soon, so suddenly, so tragically to the ones we love, which leads me to believe that none of us are feeling particularly celebratory as the date draws near. We all have that one day. A day filled with dread and loaded with dismal realizations; our own person D-Day. No, I can’t bring myself to call it an anniversary so “death-versary” it is. Sounds a bit morbid, I know. But how else can I honestly begin to approach this day?
Sept. 26 marks the one year death-versary of Tom. It is unimaginable that he has been gone that long. I have alternated so many times over the last year between feeling like he was just here a minute ago and feeling like he has already been gone for four lifetimes that I think I have given myself whiplash. Life has continued to go on while I feel frozen in place. Days have come and gone, and yet I feel like nothing has changed. My crowning accomplishment is that I woke up every day. I got out of bed. Seriously? That is my accomplishment!
Whether I like it or not, the first year has passed. One whole year without the person who gave my life meaning and filled my heart with unimaginable amount of love. So how am I supposed to acknowledge this day? How are any of us, the unwilling members of “Club Grief,” supposed to recognize this day for what it stands for? For most of us this day signifies one of the absolute worst days of our entire lives, filled with loss and devastation, questions that can never truly be answered. So how should this day be spent? I wish I had the answer, any answer, but I think every single one of us must slowly live our way into our own answers.
Throughout grief we are forced to constantly make decisions like: what to do with their belongings, how to celebrate the holidays, what traditions to continue on with. The death-versary is just another one of those decisions and one I am currently faced with.
Should I ignore the day and just go to work like normal and hope it will be distracting? Should I take the day off and spend it hiding under the covers? Should I go spend the day with family and rely on each other for support? Should we have some kind of organized service? Should this day be no different than any other day?
I think it comes down to this; whatever ends up being the final decision it will never be enough or give me any sense of comfort. He is still gone and the pain will still be there.

A tornado of the heart has hit - how do you go on

No matter how much time you had to prepare, you may still have that gone-just-like-that feeling. When your spouse took her/his last breath, your life changed forever. The shock waves hit every part of your life.

You’ve suffered a devastating tornado of the heart.

Half your heart is gone. Your home has been swept away.

How do you go on? How are you going to rebuild?

As you grieve, the answers will come in their proper time.

Here’s a grief affirmation for today:

“It’s okay if I feel devastated at times. You were my home.”

Tornadoes of the heart can be devastating. You are not alone, though it may feel that way at times.

Breathe deeply. Take your time. Be nice to yourself. Recovery is hard.

You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered.”
― Elisabeth Kübler-Ross

My walk through grief - along

The Walk -

As some of you know I write about my “walk” with grief - sometimes I share - but most of the time I choose to simply write. I am not an expert - even thou I feel I now hold a PH.D.
that I did not study for.

The WALK is something that everyone does differently - I have one friend that is traveling the world marking off the Bucket List that she and husband had put together, one choose to move in with her daughter and son in law, one is putting together activities in her husbands memory, another is stuck so far in her WALK that even when I stretch out my hand I can not touch her. 

It is a personal journey.

In my WALK I am much of a loner - yes I know what you are thinking, I do like to laugh and love, and I can't say I have ever met a stranger - but as for my grief I share the hurt from my broken heart and bruised soul on the lines in my journal and shared with my dog Bo - neither offer up solutions or judge. 

I am blessed with family, friends a wonderful church family, a pastor that knows when I simply need him to squeeze my hand, and the best hugger this side of heaven. I live in a home filled with love, laughter, true compassion and of course my dogs. God saw fit to send me Rose Campbell - how blessed I am. (I was left with a 5BR 3 story home with a 2br apartment d/s that my parents lived in) on several acres of land and I rattled around in it's emptiness.

With a moment notice I can reach out to any of these people, a simple call. I do not call - I am a loner. 

Why? 

Several reasons - first and foremost this is my WALK, it is personal and raw. I want to feel every emotion - the valleys and the hilltops. I want to ugly cry and laugh all within a few minutes. 

Often when we share our WALK people pull away - Why - because in facing our grief they are forced to realize someday they will face their own. So, I don't call - I would never want anyone to face the WALK any sooner than they have to. 

You have the right to your own definition of grief. For someone else it may be a journey, a blessing, a teachable moment, a test, a process, a choice. It doesn't have to be any of those things for you. It can simply be where you are at the time. Or it can simply and profoundly suck.

Things I know for sure -
I will hang in there. I am braver than I ever thought I was. I are not alone although this journey is deeply lonely. I am loved. I will not always feel this way. 

Thanks to those that have said to me - We honor the pain and memory and life-altering experience you are having. We are here to help you. We are not mind readers so we need to communicate if you need something. Nobody is judging you. We are heartbroken for you. No matter what, we will walk beside you. 

Grief is the price we pay for deep love. Mourning means we had someone worth missing - and I would not trade any amount of pain I have to endure for one day of the love Tom and I shared.

One of the ways I choose to grieve - tattoos are not for everyone

This is the tattoo I got shortly after Tom died - below is the explanation as to why I choose this one.

He was my strength - my soft place to land - the roots of my life that kept me anchored.  He is the one that I always knew would be there - no matter what - his love was the closest thing to unconditional love I will experience this side of heaven.  He held the strings of my heart in his hands and played them every so gracefully - just enough tension in the strings to keep me grounded and enough slack to let me adventure out.  One of  my joys in life is traveling down back roads that I have no idea where they will lead - but I never went too far that my roots did not draw me back to him.  

The strings have been cut and roots dug up and left exposed to the weather - where the waves of grief wash over the roots and the wind of sadness play over the strings.  Those roots once held me so tightly that I felt I could not take my next breath if they were ever loosened.  I have learned to breath without them but I continue to stretch out my hand in search of the strings and roots that were my life.  He still reaches back - but I cannot feel his touch.  

And now I grieve him -

When my husband died, I was so grateful for the love and support that I received from friends, family, coworkers… Everyone. I have never felt anything but love and gratitude, and even a little bit of peace, from all of it. So many people came to the funeral, and it was beautiful. We laughed and cried, it was perfect.

And then everyone went home. Everyone except me.

I never felt as though I went home from that funeral. He was my home, I felt homeless. I was a wife without a husband, a left without a right. I will never forget how strange my house suddenly felt without him. It went from a home to a house. My life was upside down and backwards, and it felt oddly like a prosthetic life. It was mine, I knew it was mine because when I opened my eyes there it was. But it didn’t feel like mine, it didn’t look like mine, it didn’t move when I told it to move. It wasn’t mine, but it is what I was left with after mine was ripped away.

I never went home from my husband’s funeral. Not to the home that I once knew. Instead I had to learn how to build a whole new home from the scraps of the old. I’m still building, I’m still scraping.

The life I had started with him ended. I miss what was, but more than that I miss what could have been. I miss the life that I was supposed to have. I miss the anniversaries that I will never have with him. I miss hearing about his day at work. I miss texting him all day long about every little thing in my day. I miss his jokes. I miss his laugh. I miss the sound of his voice when he’d tell me he loves me. I miss him.

So to everyone who came to his funeral and then went home, I am glad you came. I am glad you were there for me. I am glad you were there for him. I am grateful for all of it. I struggle to find the words to tell you how much you have done for me by being there for him, and then me. And I hope that you never stand in my shoes. What I want is for you to be grateful for what you have. Honor what I have lost by being grateful for what you have. Love completely, fight less often, find more opportunities to show compassion and love to someone who needs it. Look at your families and know that there is someone out there who is missing theirs. You went to a funeral and then you went home. Don’t take that for granted.

Finding a new normal

This maybe more information than you need and from now on updates will be more along the line of – Chemo today – doing really good not sick or had a good day today went out to lunch.

As you know in 2007 Tom was diagnosed with myelofibrosis (MF)– quiet a shock 6 months to a year to live.  This changed very quickly once we found the right doctor to take charge of his treatment.  After this dx we had to find our new “normal” and we settled back into a fairly normal life.  Adjustments were made for the days that Tom just did not have the energy to really do anything – we learned to enjoy the good days and sit with each other during the not so perfect ones.  Doctor appointments every few days became a part of our routine

In June of last year Tom kept having one urinary tract infection after the next, the doctor could not get it to clear up.  Dr. Nicholson decided to go in and take a look at inside of the bladder – a tumor was found and 6 treatments of BCG followed (a type of chemo put directly into the bladder).  Then Dr. N went back in and the tumor was back – removed tumor and 6 more rounds of BCG with interferon – back in to take a look – tumors are back.  It is now late Feb – Dr. N sent us to Dr. Shelfo – CAT scan was ordered – Dr. S went in to look at bladder this time  3 tumors were found and removed – then the results of the CAT scan came back and showed a lesion on the liver – it was not there last June - back for biopsy of liver  - this came back as bladder cancer that had spread to the liver. Keep in mind that each time Dr. N or Dr. S went in to the bladder all biopsy’s outside the bladder were negative – it was not in the muscle of the bladder of the lymph nodes around the bladder.  How did it get outside the liver – no one really knows – cancer does not follow any hard and fast rules.

Keep in mind if you are going on line and and doing any reading – this is NOT liver cancer – It is STAGE 4 bladder cancer that has spread to the liver.

We reached out to Dr. Winton who is the doctor at Emory that has been treating the MF and head of the oncology dept at Emory.  It took him a few days to find the guy he want to take care of Tom.  Dr. Crawford – he is in the same department as Dr. Winton and they can communicate directly on what the best approach for treatment is. MF adds a whole new diminution to the treatment Tom can and cannot receive.  To date there are no studies on how patients with MF and on Jakafi react to chemo.  They will be working very closely.

Our visit with Dr. C on Wednesday was not what either of us were expecting to hear – yes we knew the lesion in the liver was cancer but it was small – 3cmm – our thoughts were they could go in and remove that section of the liver then surgery to remove the bladder – some chemo and then good another 5 to 10 years.  No one had led us to believe any different.

Dr. C was very nice and very informative but he gave us very little hope that there would be a cure.  Of course there are miracles and God has worked many – but reality for now is 6 months with no treatment and hopefully a year or so with treatment.

We are all trying to process this information right now and that ain’t easy.  So far Tom has shared these thoughts with me –
1. He is not afraid of death – the process of dying is a bit of another issue.  He vows to fight for as long as it is feasible.  Exact words – millions of people have been through chemo and so can I.
2. Right now he says he is a bit numb but knows that feeling will change – change to what not sure.
3. He will not shut us out but ask that we respect his right to make the decision as to when he wants us “in”.  He wants to go through the first round of chemo – starting June 4 – and see what it looks like on the other side.
4. He wants to die at home in his own bed not a hospital bed.
5. He wants to be cremated – I will keep his ashes – when I die I will be cremated – our ashes put together and buried
6. He will make all the arrangements for his funeral
7. He does not want me to be alone when he dies
8. As long as he can he gets to make the decisions about HIM

So, now we come to today – I did not work and have informed them at work Tom comes first and when needed I will be at home and if that does not fit into their plans to let me know, so far they say they will support me 100% but we all know how quickly that can change and if it does I will simply stop working draw my SSI and unemployment but Tom will come first – period.  We went to lunch at RuSuns, then to Whole Foods and picked up some stakes for this weekend.  Tom can tolerate about 4 hours of moderate activity – dinning, shopping.  His appetite is still good – down a bit since we picked up some bug from one of the snotty nose  peaty  dish kids at the hospital   - but hoping it will pick back up.  He has only lost 3 pounds.

Please, understand that I love each of you and I do not ever want to leave you out or hurt your feelings BUT – Tom comes first and I will do whatever necessary to make sure that his wishes are respected.  I also know that I cannot do this alone and will depend on you guys to help me navigate the unknown waters ahead

My prayer is that none of you ever have to experience this roller coaster ride from Hell we have been thrown on to

Grandma's Hands

Grandma, some ninety plus years, sat feebly on the patio bench. She didn't move, just sat with her head down staring at her hands. When I sat down beside her, she didn't acknowledge my presence and the longer I sat, I wondered if she was okay.

Finally, not really wanting to disturb her but wanting to check on her at the same time, I asked her if she was okay. She raised her head and looked at me and smiled. 'Yes, I'm fine, thank you for asking,' she sa id in a clear voice strong.

'I didn't mean to disturb you, Grandma, but you were just sitting here staring at your hands, and I wanted to make sure you were okay,' I explained to her.

'Have you ever looked at your hands?' she asked. 'I mean, really looked at your hands?'

I slowly opened my hands and stared down at them. I turned them over, palms up and then palms down. No, I guess I had never really looked at my hands as I tried to figure out the point she was making.

Grandma smiled and related this story:

'Stop and think for a moment about the hands you have, how they have served you well throughout your years. These hands, though wrinkled, shriveled, and weak have been the tools I have used all my life to reach out and grab and embrace life. They braced and caught my fall when as a toddler I crashed upon the floor.

'They put food in my mou th and clothes on my back. As a child, my mother taught me to fold them in prayer. They tied my shoes and pulled on my boots. They held my husband and wiped my tears when he went off to war.

'They have been dirty, scraped and raw, swollen and bent. They were uneasy and clumsy when I tried to hold my newborn son. Decorated with my wedding band, they showed the world that I was married and loved someone special. They wrote my letters to him and trembled and shook when I buried my parents and spouse.

'They have held my children and grandchildren, consoled neighbors, and shook in fists of anger when I didn't understand.

'They have covered my face, combed my hair, and washed and cleansed the rest of my body. They have been sticky and wet, bent and broken, dried and raw. And to this day when not much of anything else of me works real well, these hands hold me up, lay me down, and again continue to fold in prayer.

'These hands are the mark of where I've been and the ruggedness of life. But more importantly, it will be these hands that God will reach out and take when He leads me home. And with my hands, He will lift me to His side, and there I will use these hands to touch the face of Christ.'

I will never look at my hands the same again. But I remember God reached out and took my grandma's hands and led her home.

When my hands are hurt or sore or when I stroke the face of my children and husband, I think of Grandma. I know she has been stroked and caressed and held by the hands of God. I, too, want to touch the face of God and feel His hands upon my face.

When you receive this, say a prayer for the person who sent it to you, and watch God's answer to prayer work in your life. Let's continue praying for one another.

Passing this on to anyone you consider a friend will bless you both. Passing this on to one not yet considered a friend is something Christ would do.

-Author Unknown