So I did a little beginning of the new year organizing: cleaning out old files, sending things to Goodwill. I opened a box I apparently hadn't opened since it had been packed in 2007. The box contained some of Daniel's books, all of the condolence cards I received after the funeral, and his LiveStrong notebook. The books were mostly financial in nature, although there were a couple of "health and healing" books. The cards were sad to read, and I felt alternately decades away from that time, and suddenly right back in it. That in itself wasn't too bad, although my heart did sink when I realized what the cards were.
What caught me by surprise was the LiveStrong notebook. He hadn't had it for very long when he died, and I didn't remember if he had even used it. The notebook was a tool for tracking your treatments and doctor's visits. I saw it in the box and thought to myself - "should I keep this? I don't think he even got the chance to use it. I should flip through it to make sure before I get rid of it....."
I sat on my bed and casually flipped through the notebook, noticing the tabs for different subjects. I saw a few notes in his distinctive handwriting, and I began to pay closer attention to the content. One of the tabs was for recording diagnosis information and treatment plans. He had updated it for each diagnosis, including his last one, and the treatment plan for each - including his last. He only had three days at home between the time he was told the treatment protocol for his last treatment, and the time he went to the hospital and never returned. In that three days - while totally drugged up on morphine, Daniel wrote the treatment protocol in his notebook and left a space for his reactions to the treatment and his results. He never got to fill those in. He died the next week - his carotid artery suddenly burst by the cancerous growth in his neck.
The renewed realization that even in his last moments he was planning his recovery was a kick in the gut to me, and I sat there on my bed in shock. At the time I knew he was fighting to live, but to be reminded of it five years later was hurtful in a way that surprised me. It took me a few days to realize what bothered me so much. Even after his third and completely bleak diagnosis, he wasn't planning to die. He wanted so desperately to live. He didn't get the chance to really come to terms with his illness or its apparent shitty ending - it all happened too fast. I have always wanted to tell him how sorry I am that he died. I have always wanted to say how sorry I am that he tried so hard in vain. I've wanted to tell him it just wasn't f-ing fair to him.
We said a lot of things in those last few weeks, and I don't have any regrets or feel like I didn't say something I should have. But I think the notebook made me realize in a different way that I felt like there was something very important still unsaid. I shared so many things with him, and one of the most important events in his life - his death, I also shared with him. I was there with him, watching it happen. It was horrific for me, and I always wondered what it was like for him. We didn't get to talk about it. Clearly, you never get to talk to the dead about their death - at least not in this lifetime. Who better than the readers of this blog to understand that? It's true for all of us, but even 5 years later, that just sucks.
I like to imagine sitting in a pub with him and having a pint and a nice long chat about it all. Maybe some day we will.
I'm sorry Michelle.... These comments sound so familiar. We were so concerned with saving my husband's life, I never seriously considered the possibility of his death (even with a terminal illness). These words ring true even over ten years later. My heart goes out to you and all those facing this...
ReplyDeleteI can totally relate to what you're saying. My husband did not plan to die either, although it was apparent to all around him that it was imminent. I had to see him when his pulmonary artery burst because of the cancer he had been fighting 6 years. He wanted to live, and that's exactly what he did for 6 years of treatment. He never stopped. He kept a Livestrong notebook too. I'm wearing the bracelet he wore for 6 years. He was such a wonderful man, the love of my life. He shouldn't have had to go that way.
ReplyDeleteSo true so often.
ReplyDeleteBut always remember you loved him and he loved you; that is what counts and nothing can change that.
Virtual hugs come your way.
Michelle, I found my husband's planner with all the work appointments he had planned out. I had the exact same thought as you, that he thought he would beat the cancer too. Yesterday I found the book he was reading when he died. Folded up inside was a paper with his blood pressure that he took every morning and night and wrote down so he could tell the doc at chemo. Somehow I couldn't get rid of either one. I do hope there are two open seats next to you at that pub, because I'd love for Chuck and I to join you and Daniel.
ReplyDeleteempathy...
ReplyDeleteThat hope keeps us going, doesn't it?
ReplyDeleteThough my husband's death transpired in a very different way, I can completely relate to the burning desire to have this conversation. I have so many questions and in the end, I suppose, I want to know it is a peaceful assent no matter how the experience was from my point of view. I am only almost 8 weeks away from the event, but clearly this is a very common desire for all of us.
ReplyDeleteMichelle,
ReplyDeleteI understand the land mine. I often come across items that have not yet been put away, packed or thrown out.
Just the other day, I stumbled across hospice admission information. Tucked inside was some of my husbands attempts to write. He lost his ability to communicate due to brain cancer. He too, never gave in to it. For six months before his death, he had swift and debilitating progression....he thought he was going to beat it. He had tormenting frusration as his illness took everything from him. I often wonder if it would have been easier on my family had he accepted he was dying? It's not even been a year since he passed and I dread coming across things that might have something from those last months.
This hits so close to home. My husband planned on living too. He fought so hard to make it happen but we all knew that there was no hope. A glioblastoma stage 4 doesn't give up until it completely consumes a person.
ReplyDeleteMy husband was walking every day, trying to get stronger but it was not to be. I heard from another patient's wife who shared his room that he would stand up on the side of the bed and do leg lifts to strengthen himself.That broke my heart. the determination of this man was no match for the good 'ole glio' though. Eventually his heart stopped beating and gave in five months after the diagnosis. This day comes back to me often even though it has been over 2 and a half years now.
Someday maybe we'll talk again and I can tell him how much his courage and determination have stayed with me and inspired me to go on.
Michelle,
ReplyDeleteI am with you. It feels wrong for Chris and I to have gone through one of the biggest events of our lives and not be able to talk about it. I tell him over and over that I expect to hear his story someday.
I also wish I could tell him how sorry I am that he died this way. That he died at 30, that there was nothing to be done. I hate it. Sorry doesn't even cover it. I need a more intense word.
I hope we all get to have the conversations we want some day, so that we can lighten the load on our hearts.
My husband died of an anoxic brain injury following surgery. He was in a coma for 8 days and his eyes were open, blinking, but not seeing. I wanted so badly to hear his voice one more time or to hear his "rattle the beer mugs off the table" laugh. Just once more...it wasn't meant to be. I do fully expect to have that conversation some day though. The conversation where he tells me that he was aware of the love that surrounded him and that he wasn't afraid. I hope that's the way the conversation goes...
ReplyDeleteLynee
Landmines is a good description of what it feels like to happen upon stuff. Over the years I've gone through what's left of Bradley's and have gotten rid of it when it felt right to do so. This year is my 10th anniversary without him, and there are still things I find that can catch me off guard like that. He was fierce about his recovery even though his diagnosis of Lung Cancer was made in Stage 4. He fought sooooo hard. I hope I have half his courage when if my time comes to fight like that.
ReplyDeleteI am surviving ... 10 days out ... however, it's not my husband, but my ex. We parted years ago but he was the love of my life and father to my children.
ReplyDeleteWe, too, had shared many moments together: the birth of our children, walking through treatment for alcoholism, etc. Something that didn't dawn on me until I read this post was because of choices made, we were forced to set boundaries. With regret...he died homeless and alone.
I am ridden with conflicting thoughts. I find solice as I read stories written herein, as grief, as final and ugly as it is, is no respector of persons. I read I am not alone and my feelings are much like others, although my story may not be.
Thank you for allowing me a place...
Mick-
ReplyDeleteI don't know if we ever get over what is lost. But what you must know is for every lost, there is a found!
Much love to you this day!
Thank you for writing. My beloved husband died November 2, 2010 of a stage four glioblastoma, he was 56. He lived a year and a half, a "miracle" or so I have been told. I so recognize the strength of the stories of loved ones trying desperately to survive and the pain of being the person to walk with them, seeing and knowing the end of life is coming. Even though my husband had terminal cancer from the diagnosis, I was surprised that I still held hope because he was so determined to live, so desperate to stay alive for his family. Everyday I wake without him is a desperate grief but I carry on, we all carry on because to do so denies the very thing they desperately desired ~ life.
ReplyDeletePeace to each of you.
I made the mistake of reading this at work earlier today. Couldn't finish it because of the tears.
ReplyDeleteAll so familiar. Fighting a terminal cancer diagnosis and believing to the very end that Dave, my hero, could beat it. Of going into the hospital for what we thought would be a day, but not returning. Of being drugged up on morphine and still trying to remain in control. Trying to keep us laughing. Never giving in. Believing in life 'til the very end.
All in vain. All so unfair. All so very unreal, even 7 months later.
All so overwhelmingly sad.
How does one get over watching your husband, your partner, your lover, your life, your future, take his last breath?
I so wish we had the chance to talk about everything that has happened since my love's death. He was diagnosed with pancreatic cancer and was never really given a chance for survival. he lived for six months after being diagnosed. he fought to live up until the final days. we were lucky to have the time to talk...but in the end, he barely spoke...i have memories mostly of my voice and his silence. i miss having him to share my life with so much.
ReplyDeletethose unexpected landmines that come when something great happens and all i want is him to share it with...still lonely, still painful.
Valerie ~ I don't think we do get over it. . . I think we learn to live with the knowledge they are gone. My husband was as you describe yours - he died at home, with our children and me at his bedside. When he took his last breathe . . . the finality of that moment will remain with me until the end of my own life. How could it be? How could our life together, his beautiful life be over? I find comfort in knowing how deeply we loved each other until the very end. Once my husband said "I am sorry, for all of this" I was so saddened by his feelings of helplessness - that day I said "we planned on being together until the end of our lives, it would have been one of us ~ I am just so sorry it is happening now and to you".
ReplyDeleteEveryday I look at his pictures, I read his notes, I remind myself ~ he lived . . .he lived . . .he lived.
I too can so relate. My husband was in remission for 16 yrs from a stage IV diagnosis of a rare form of Nasal Cancer,he fought hard and we were blessed. He had a minor surgery (3 years before he passed) where he caught a "Superbug Infection" in the hospital. I was told 3 times he wouldn't make it thru the night, but he fought so hard, he'd not only make it thru the night but get released from the hospital only to return over and over and the last three years of his life he lived in & out of the hospitals to slowly deteriate in front of my eyes, loose a leg from blood clots, a bladder, part of his intestines, etc. all from a superbug infection. He never woke up after his last surgery and spent the last 5 weeks in ICU medically induced sleep. He was always a fighter, and I didn't want to think he couldn't do it again, but part of me knew till the roller coaster finally stopped . I wanted to tell him so much and still to this day still want to tell him so much. It's 15 months now. Its part of this pain & grief not being able to hear his voice and communicate with each other. I too came across his daily journal & several months after decided to look at it and to read one day entry that he could live with what ever God dealt him, but "Please don't let me die, I don't want to die"....How do you get ever recover from these "land mines" and as mentioned above & "how do you get over watching your husband, lover,partner, best friend, past, present & future take his last breath?" Those devastating moments are scars on my heart forever.
ReplyDeleteSomeday Michelle......I pray to God that we will see them again someday..........
ReplyDeleteMichelle, As I read your post I thought WOW- that is me- I too was fighting and trying to remain so positive about my husband's illness even though we knew the outcome was not changing. In his last days in ICU, he was unable to speak- they had put in a tube for his breathing and but him under to "rest and heal". I had so many more things to say to him, if I had thought the end was then, in fact I wanted him to tell me things as well. I do know that he loved me and he left this world knowing I loved him. I guess in the end, that is all we really needed to know. I like you hope one day we can meet in a pub, on the beach or anywhere, share the sunset and discuss our time apart.
ReplyDeleteThank you for your post-