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Jttalways

My husband died of leukemia

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Jttalways

My husband just passed away 30 hours ago. I am numb, broken-hearted, & unable to sleep. I found my way to this forum searching for any semblance of comfort. I am hoping that writing this will be a therapeutic relief for me. My husband was diagnosed with the rare & aggressive mixed phenotype acute leukemia at 34yrs old on February 20, 2018. You think you can prepare yourself for the worst, but you can’t. I am a broken mess of devastation, anger, regret, & sorrow. His only hope was a bone marrow transplant. Everything was ready to go, donor & doctor, but due to many health obstacles, i.e waiting for a fistula to clear up, intestine biopsy & bronchoscopy (both tests results yielded nothing!), & a breakout of shingles, prolonged and prevented my husband from getting the transplant. By the time he was finally cleared to proceed with transplant, he had fallen out of remission. First time, it was a month before transplant. 2nd time, 5 days before. Last time, we found out 1 DAY BEFORE transplant. My poor husband spent most of his diagnosed life in the hospital. Endless rounds of intravenous chemo, his body weakening with each round. Multiple bone marrow biopsy results yielding positive for leukemic cells, resulting in another round of chemo being ordered. Several spontaneous trips to the ICU due to low blood pressure & infection. My husband developed a fistula sometime in the middle of his battle. This fistula flared up and raged every time my husband’s WBCs hit zero. He was in excruciating pain every time it was inflamed. The only brief relief from this pain was intravenous dilaudid, which was usually administered 1mg every 2 hours. After several trips to the ICU due to his blood pressure bottoming out, my husband realized the trigger. The trigger was when he took dilaudid in pill form in between his IV doses, his blood pressure would plummet, code blue would be called, resulting in separate trips to the ICU. So, he swore he would not mix dilaudid pills and IV dilaudid together. Fast forward to this past Sunday. My husband just finished his 15th or 20th round of chemo. His WBCs are nonexistent. His fistula is alive and throbbing. He’s paging the nurse for pain medication. She walks in announcing “the doctor swapped your morphine pills for dilaudid pills.” He had been getting IV dilaudid with time release morphine pills in between. My husband “I don’t want to take dilaudid pills.” Nurse “No, it’s ok, it’s for your pain.” My husband “No.” I jump in since he’s in pain and it’s hard for him to speak, “He doesn’t want to take it because he believes that when he takes the pills and IV together, it causes his blood pressure to drop. This is why he went to the ICU the last 2 times.” She looks at us like we don’t know what we’re talking about & insists he takes the pill. He refuses and I ask her to send the doctor a message to remove the dilaudid pill and reinstate the morphine pill. The nurse says she’s noting in the computer that my husband is refusing the medication and she leaves the room. In an hour she returns and gives my husband his usual IV dilaudid dose. My husband’s pain is relieved and he falls asleep. A few hours later I leave to go home for the night. The next morning while I am at work my husband calls me in a panic. “My blood pressure dropped! They are moving me to the ICU!” I reply “What happened?! Did you take the dilaudid pills?” He cries “Yes!” I cry “Why?” He proceeds to tell me that his night nurse did not offer him any other alternative medication for his pain. So, due to my husband’s anguish, he took the dilaudid pills. He said he took a dilaudid pill at 5:30am, then received his IV dose at 8:30am. By 9am his blood pressure dropped and he had to be resuscitated. When he came to, thats when he called me. Since this has happened a few times before, I reassured my husband that he would be alright and that I loved him. I told him I would get off work and see him soon. Once I got to the hospital they were in the process of transporting him to ICU. As they wheeled him out of the room he was clearly distressed but still coherent and managed to get out a “hi love” to me as they wheeled him to the elevators. Never in a million years would I think that would be the last time I would hear my husband speak. While getting situated in ICU my husband stopped breathing and was revived with Narcan. Once revived he exclaimed to the nurses that he couldn’t breathe, so they intubated him. My husband’s body went in septic shock. My husband spent the last 30 hours of his life in sedated intubation while his organs shut down. I held his hand and spoke to him. I got several responses like eyes rolling towards me, hands moving, arms lifting. But I will never know for sure if my husband heard me tell him over and over that I loved him. While all his organs shut down, his heart was the last one fighting until, rather abruptly, it finally gave out. My husband fought hard. During the last year and 7 months of his life, he dealt with the horrible effects of chemo, including seizures, arthritis, lost of vision in 1 eye, when flared up excruciating fistula pain, excruciating nerve pain from shingles, etc. I am angry, broken, and full of regret. The typical regret of “I should have spent more time with him,” even though I saw him every day. More specific “I should have stayed with him that night to make sure he didn’t take those pills” & “I should have pressed the issue and made sure the nurse relayed the message to the doctor about changing the dilaudid back to morphine.” But the 2 bigs ones “If my husband didn’t take those goddamn dilaudid pills, he would still be alive.” And “He never got the bone marrow transplant.” My husband spent 10 weeks out of the hospital this year. I am grateful for that time he got to be home with me and our son. My husband will never age for me. When and if I live to be old and gray, he will be forever young. I pray and hope that he knew how much my son and I loved him.

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KayC

Oh Hon, this is heartbreaking to read, you guys are younger than my kids.  To think of you both going through so much, it's so unfair.  My daughter's husband left her, then after 8 months inserted himself back without doing the work that needed done on the marriage, now two years later wants a divorce, wants HER to leave!  I look at everything you guys went through, you had a strong marriage and went through everything together, yet my daughter, who has been with him for 19 years, is left alone through no fault of her own.  I guess there's more than one way for death to occur.  At least in our case our love is intact, that is something.  Forever young.  That's how I feel about my husband, he died over 14 years ago, he'd just turned 51, we didn't meet until our mid-40s.  What you say is what I went through that last day too, as he fought for his life in excruciating pain, I wonder, was he aware that they threw me out and locked the door as they worked on him?  Did he know I didn't willingly abandon him, that I love him more than life itself?!  I pray and hope the same as you do.

I don't know why some people have lives that seem peachy while some suffer.  I used to ask why but finally quit asking, there seemed no answers in return.

I am so sorry for your loss.  I'm sure your husband knows your love for him and your son's too.  I hope you have good support nearby.  And I hope you get audience with his doctor about what transpired, he needs to know that the nurse didn't fully convey your message and this caused his death.  The nurse should be fired.  Medical personnel need to learn to listen.  Sometimes we know something!  They are not gods.  This should not have happened, I'm so sorry.

You've found a good place here with supportive caring people that get it.  Our experiences may be unique, but what we go through has its similarities.  We want to be here for you as you go through this journey.

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Heart&Soul

I'm so sorry that you both had to go through this and your husband suffered dearly - it's tragic. My heart goes out to you and your family.

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Jttalways

Thank you both for responding. KayC, thank you for your kind words. It brought me comfort and tears to my eyes. Thank you.

9 hours ago, KayC said:

Oh Hon, this is heartbreaking to read, you guys are younger than my kids.  To think of you both going through so much, it's so unfair.  My daughter's husband left her, then after 8 months inserted himself back without doing the work that needed done on the marriage, now two years later wants a divorce, wants HER to leave!  I look at everything you guys went through, you had a strong marriage and went through everything together, yet my daughter, who has been with him for 19 years, is left alone through no fault of her own.  I guess there's more than one way for death to occur.  At least in our case our love is intact, that is something.  Forever young.  That's how I feel about my husband, he died over 14 years ago, he'd just turned 51, we didn't meet until our mid-40s.  What you say is what I went through that last day too, as he fought for his life in excruciating pain, I wonder, was he aware that they threw me out and locked the door as they worked on him?  Did he know I didn't willingly abandon him, that I love him more than life itself?!  I pray and hope the same as you do.

I don't know why some people have lives that seem peachy while some suffer.  I used to ask why but finally quit asking, there seemed no answers in return.

I am so sorry for your loss.  I'm sure your husband knows your love for him and your son's too.  I hope you have good support nearby.  And I hope you get audience with his doctor about what transpired, he needs to know that the nurse didn't fully convey your message and this caused his death.  The nurse should be fired.  Medical personnel need to learn to listen.  Sometimes we know something!  They are not gods.  This should not have happened, I'm so sorry.

You've found a good place here with supportive caring people that get it.  Our experiences may be unique, but what we go through has its similarities.  We want to be here for you as you go through this journey.

This brought me comfort and tears to my eyes. Thank you for your kind words. 

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Gail 8588

 Jttalways, 

I am so sorry for your loss.  Your loss is so new, of course you feel numb.  All the feelings you are having are totally appropriate.  It is not fair, any of it. 

Allow yourself to feel heartbroken, lost , angry, numb. Just keep breathing and put one foot in front of the other and you will find your way.

Peace, 

Gail

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Rhonda R

I know you think you will always feel like this and that there is no light at the end of this tunnel.  That new raw grief is the absolute worst.  It's so consuming, it's hard to tell one day from the next.  Your journey has been horrible.  Your husband was far too young to suffer any of this.  I too have to ask myself why, even though I know there is no answer.  Just know that we understand your feelings.  We understand your pain.  There is no way you can prepare yourself for the devastation the follows the loss of your love.  You were trying to be so many things to so many people.  Please don't blame yourself, you tried, you both told the nurse.  I do understand your anger at the medical people as we had a similar incident with a spot on Randy's lung that they biopsied and told us it was nothing.  Guess what?  It was something alright.  

15 months later I still love and miss my husband, I always will.  But it's not that horrible raw grief that you are experiencing now.  My heart goes out to you.  I'm so sorry that you and your son are suffering.  Don't ever doubt that he knew how much you loved him.  Praying for strength for you in the coming days.   

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Jttalways

Thank you all for sharing. There has been so much love and support pouring in that I wish I could tell my husband all about it. Wish I could tell him how much he is loved by all our friends and family. All these people to talk to, except the one person I want to talk to. My husband is still in the hospital morgue and I’ve been wanting to go there to see him. I don’t think the hospital would allow me to and my aunt that works at a hospital said I shouldn’t go there because hospital morgues are a cold and unfeeling place. I just want to see and talk to my husband. I reach for my phone everyday to text and call him before realizing, once again, he is gone. We’ve been together since we were teenagers, almost 17 years. It’s hard to adjust when you’ve spent almost half of your life with someone. Like the one lyric in landslide, “I’ve been scared of changing, cause I’ve built my life around you.” My cousins were visiting and when they were leaving I glanced at the clock and thought “ok I’ll head over to the hospital right now” to spend time with my husband, before realizing again that he is gone. Because for the last year and 8 months, that was routine. Due to my husband’s type of cancer, he had to be hospitalized months at a time for his treatment. Work, hospital, pick my son up from school, hospital, take my son to practice, hospital, rinse and repeat. Many comments in here say it will get better in time. I just miss him so much, I will always be missing him. 

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KayC

Ronda is right, the intensity of the pain will lessen.  We never like what happened but gradually we get more used to the changes it means for our lives.  It is such a huge shock to us it takes much time to adjust.

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Rhonda R

I too remember constantly reaching for my phone to call or text him.  He would call me every morning on my break at work and I would still expect him to call, that's so normal.  It takes time to break those routines and accept that our loved one is no longer with us physically.  Forgetting that they are gone gives us a momentary break from the grief.  I think that's your brain protecting you from what has happened and giving you time to accept the loss over time. 

I know what it's like to be in a room full of people and still feel lonely.  Going to the morgue is brave on your part and I would want to do it too, but I wouldn't want to remember him that way.  I talk to my husband often.  I have his ashes in my bedroom.  I don't believe that's where the spirit of my husband lives, in those ashes.  That's what's left of the beautiful package that God wrapped him in. 

I am glad you are receiving so much support from family and friends.  Take care. 

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Valerie Lockhart

I am so sorry for your loss. May the God of all comfort take hold of your hand and walk beside you during this difficult time. And, may you be strenghthened by God's promise to resurrect our loves ones to a paradise earth free of sickness and death. - Revelation 21: 3, 4

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KayC
17 hours ago, Rhonda R said:

He would call me every morning on my break at work and I would still expect him to call

I went through that too, George worked at night and I worked days, he'd call me at noon, when I was getting off work, when he was getting ready to punch in, his first break, and lunchbreak...it was so hard in those early times following his death because those times would arise to a silent phone...

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Jttalways

Yes, all these people I can speak to or text, except the 1 person I want to the most. I want to speak to my confidant and best friend. I want the person who loved me the most. I think about that, that no 1 is ever going to love me like he loved me. I don’t want anyone to love me if it’s not him. No one is going to want to hear about the little minute details of my day like he did. Today is 1 week since he passed. I wasn’t there the last time he was conscious, when he was sedated and intubated. I had left while they set him up in ICU. I wish I had been there. I wish my face was the last face he saw. I wish he knew I was with him. 

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foreverhis
On 9/28/2019 at 8:08 AM, Jttalways said:

There has been so much love and support pouring in that I wish I could tell my husband all about it. Wish I could tell him how much he is loved by all our friends and family. All these people to talk to, except the one person I want to talk to. ---  I just want to see and talk to my husband.

Oh, my dear, I know that feeling so well.  After more than a year, that's still what I want.  The one person I could go to for comfort and care is the person who has been taken from us.  Even when I'm surrounded by people who love us both, I still feel alone most of the time.  You and your husband are so young to have gone through so much.  My heart hurts for you.

I talk to my husband every day--yes, every day.  I say good morning to him; I open the shades and look out at the water a little bit in the distance and say, "Look, honey, it's a beautiful day today.  I hope you can see it where you are."  I talk to him about our girls, ask him for help (even though it's my own mind rumbling things around to try to find the right solutions and decisions), and just vent sometimes.  None of what happened was his fault, so I am not angry with him.  But I am angry with the doctors and hospital.  They didn't take his change in symptoms seriously enough or soon enough.  There were small delays along the way that I should have pushed harder.  I take the blame and guilt on myself because I am here and he is not.  So I ask him to forgive me and tell him how much I love and miss him.

Talk to your husband.  Vent and cry when you need to.  If you're a person of faith, it's even okay to yell at God, to ask why a good man was allowed to suffer, to say exactly what you feel.  No God that I could possibly believe in would fault you for it.  Any God worth believing in is strong enough to take our pain and anger along with our happiness and love.

Do keep following up with the doctors and hospital.  They had a duty of care.  Yes, it was your responsibility to be your husband's advocate and you very clearly gave all of yourself to his care and support.  But is was not your responsibility to be a medical professional.  You could not possibly be everywhere and everything at all times.  Please, I urge you to try to be easier on yourself.  Your feelings of guilt and regret are not just normal, but expected.  My husband had bladder cancer and complications from procedures.  Even though the doctors let us down in many ways, I still take all the blame on myself.  The "what if" and "why did/didn't" and "should/shouldn't have" and on and on circle around in my head every day.  I am working on shifting the guilt into regret.  I am working on not blaming myself for everything.  It's a long and painful process, but I think it's something we must try to do.  You gave your whole heart and life to your husband.  I think we must ask ourselves if we'd be so hard on others in the same situation.

It's good that you've found this forum.  We are all here for the same reason.  Though our stories are individual, the unwelcome journey we are on is much the same.  Over time, my overwhelming, raw grief is beginning to soften a little bit.  I don't find myself down in the dark abyss as often, though it is always there.  And I have small bits of hope and light in my life that wasn't sure I'd ever see again.  I grieve.  I will always grieve, but I am learning to live with it as a part of the life I must live now.  We should try not to ask more of ourselves than we would ask of the soul mates we have lost.  It's a long, painful journey that we have no choice but to make.  But when you are here, you will never be alone on that journey.

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KayC

I ditto everything foreverhis said.  One week...I remember that time, we never forget it.  I was still in shock, in a fog.  It's been over 14 years now...and I hadn't thought I could survive a week.  No one asked what we wanted, our lives were just hurled into upheaval.  I, too, still talk to my George, and now I find myself talking to my dog Arlie, who I just lost 8/16. I feel very alone and thank God for this site.  We want to be here for you as you go through this.

I wrote this article at about ten years out, of what i've found helpful...I don't expect you to process much of this right now, maybe print it out and save it for a couple months down the road, and look at it every now and then as things hit you at different times on the journey.  I hope something in it helps you, probably the most helpful thing to me was taking a day at a time, and later on learning to look for something good in the day...that takes effort as it doesn't FEEL very good much of the time, but doing this practice can really aid us in our journey.

TIPS TO MAKE YOUR WAY THROUGH GRIEF

There's no way to sum up how to go on in a simple easy answer, but I encourage you to read the other threads here, little by little you will learn how to make your way through this.  I do want to give you some pointers though, of some things I've learned on my journey.

  • Take one day at a time.  The Bible says each day has enough trouble of it's own, I've found that to be true, so don't bite off more than you can chew.  It can be challenging enough just to tackle today.  I tell myself, I only have to get through today.  Then I get up tomorrow and do it all over again.  To think about the "rest of my life" invites anxiety.
  • Don't be afraid, grief may not end but it evolves.  The intensity lessens eventually.
  • Visit your doctor.  Tell them about your loss, any troubles sleeping, suicidal thoughts, anxiety attacks.  They need to know these things in order to help you through it...this is all part of grief.
  • Suicidal thoughts are common in early grief.  If they're reoccurring, call a suicide hotline.  I felt that way early on, but then realized it wasn't that I wanted to die so much as I didn't want to go through what I'd have to face if I lived.  Back to taking a day at a time.  Suicide Hotline - Call 1-800-273-8255
  • Give yourself permission to smile.  It is not our grief that binds us to them, but our love, and that continues still.
  • Try not to isolate too much.  
  • There's a balance to reach between taking time to process our grief, and avoiding it...it's good to find that balance for yourself.  We can't keep so busy as to avoid our grief, it has a way of haunting us, finding us, and demanding we pay attention to it!  Some people set aside time every day to grieve.  I didn't have to, it searched and found me!
  • Self-care is extremely important, more so than ever.  That person that would have cared for you is gone, now you're it...learn to be your own best friend, your own advocate, practice self-care.  You'll need it more than ever.
  • Recognize that your doctor isn't trained in grief, find a professional grief counselor that is.  We need help finding ourselves through this maze of grief, knowing where to start, etc.  They have not only the knowledge, but the resources.
  • In time, consider a grief support group.  If your friends have not been through it themselves, they may not understand what you're going through, it helps to find someone somewhere who DOES "get it". 
  • Be patient, give yourself time.  There's no hurry or timetable about cleaning out belongings, etc.  They can wait, you can take a year, ten years, or never deal with it.  It's okay, it's what YOU are comfortable with that matters.  
  • Know that what we are comfortable with may change from time to time.  That first couple of years I put his pictures up, took them down, up, down, depending on whether it made me feel better or worse.  Finally, they were up to stay.
  • Consider a pet.  Not everyone is a pet fan, but I've found that my dog helps immensely.  It's someone to love, someone to come home to, someone happy to see me, someone that gives me a purpose...I have to come home and feed him.  Besides, they're known to relieve stress.  Well maybe not in the puppy stage when they're chewing up everything, but there's older ones to adopt if you don't relish that stage.
  • Make yourself get out now and then.  You may not feel interest in anything, things that interested you before seem to feel flat now.  That's normal.  Push yourself out of your comfort zone just a wee bit now and then.  Eating out alone, going to a movie alone or church alone, all of these things are hard to do at first.  You may feel you flunked at it, cried throughout, that's okay, you did it, you tried, and eventually you get a little better at it.  If I waited until I had someone to do things with I'd be stuck at home a lot.
  • Keep coming here.  We've been through it and we're all going through this together.
  • Look for joy in every day.  It will be hard to find at first, but in practicing this, it will change your focus so you can embrace what IS rather than merely focusing on what ISN'T.  It teaches you to live in the present and appreciate fully.  You have lost your big joy in life, and all other small joys may seem insignificant in comparison, but rather than compare what used to be to what is, learn the ability to appreciate each and every small thing that comes your way...a rainbow, a phone call from a friend, unexpected money, a stranger smiling at you, whatever the small joy, embrace it.  It's an art that takes practice and is life changing if you continue it.
  • Eventually consider volunteering.  It helps us when we're outward focused, it's a win/win.

(((hugs))) Praying for you today.

 

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Jttalways

Thank you Kay C. Your post is very helpful and I will use your advice. I visited the hospital yesterday. I took 2 fruit baskets and thank you cards with my husband’s picture and memorial service details. One went to his oncologist’s office/department. The other to the chemo floor where my husband spent most of the remainder of his life. It was extremely hard. 1 part of me hated and loathed the place, the other ached and missed my husband so much. Walking down the hall to the nurses station, I wished I was walking to my husband’s room, like I had a thousand times before. I wanted to walk into a room and see him sitting up in his bed, waiting for me. When the chemo nurses saw me, they hugged and cried with me. Even though I am still very angry with the last 2 nurses who cared for my husband, I know the other nurses really did care about my husband a lot. 

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foreverhis
6 hours ago, Jttalways said:

. I visited the hospital yesterday.

You are brave.  Braver than I am.  I have not been back to the hospital where my love died.  I have driven by it a few times and only when I had no choice.  There's an outpatient surgery that I've been needing for a few years.  We put it off because it is not at all a life threatening issue and took a distant back seat to my husband's needs.  I don't know if I'll ever have it at this point.  Not only do I not know who would take care of me for the week or so after when I won't be able to do many things, but because I'd have to go to that hospital.  Even though it wouldn't be overnight, I cannot, simply cannot, bring myself to imagine walking in the same door or walking those same halls.

I would not be emotionally able to see all the nurses and CNAs who adored my husband.  The parade of women asking to come in that last day to see us and to say goodbye to him was stunning.  I considered it a testament to the man he was even in the extremes of his cancer and everything that went with it.

You did a really good thing.  I hope in some small way it gave you comfort and strength.

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Jttalways
8 hours ago, foreverhis said:

The parade of women asking to come in that last day to see us and to say goodbye to him was stunning.  I considered it a testament to the man he was even in the extremes of his cancer and everything that went with it.

While my husband was in the ICU fighting for his life, many nurses came to see him. It also amazed me how many of them were so close to my husband. He did spend most of the 1 year and 8 months at the hospital being treated. So it’s natural to develop close relationships with the staff. It was extremely hard for me to go to the hospital. But it’s Kaiser, so unfortunately it’s where my doctor and my son’s doctor is at. Plus, my son’s knee is injured and he’ll be needing surgery soon. So going to the hospital is inevitable since the ortho is in the same building. I see it as somewhere I have to go so I have to suck it up. But there are other places, movies, songs that I am avoiding that are just too painful right now.

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KayC

You ARE brave, it took me a year to go back to the hospital, and when my friend went there years later, the kind nurse (not the one I dubbed the ice queen) asked how I was.  I was blown away that she remembered me/us.

Keep coming here, it really does help.  I listened to all George's CDs and eventually gave some of them away, it's weird how we all handle this differently, but do what brings us comfort at the time.

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foreverhis
4 hours ago, Jttalways said:

But there are other places, movies, songs that I am avoiding that are just too painful right now.

Yes, I completely understand that.  My husband and I are musicians (by avocation, not profession), so there are numerous shows, symphonies, songs, and performance halls/theaters that are too painful to even consider.  We also loved to travel and had special places we visited several times.  People have started to ask me when I might consider traveling again.  My answer is "Not going to happen.  If he's not with me, I have no interest."  Besides, losing his income has meant re-orienting my budget, even though he had life insurance that allowed me to pay off our small mortgage, do some home repairs, and maybe buy a car newer than our beloved 1986 Acura.

Anyway, I still say you are brave to be able to suck it up and do what must be done.  But I guess no matter what, we parents always do that for our children, don't we?  Our girls are two of the things that help me keep going.

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Jttalways

Thank you foreverhis. I was so sad today, missing my husband so much. Staring at a picture of him sitting in his hospital bed, smiling. Yes, our children do keep us going. My son said I was doing a good job with handling all the funeral arrangements. He said “can you imagine if it was the other way around, how dad would be handling it?” Then I thought about that, how would my husband be handling it if roles were reversed?  While my husband was sick, he once did say, that he didn’t have to worry too much if he were to leave us, because he knew I would handle everything since I’ve always been good that way. I find myself looking at other people, random people on the street and I think “It’s not fair. Why my husband? Out of everyone, why him?” I know I shouldn’t feel that way because that’s the way it is, life isn’t fair. Cancer does not discriminate.

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KayC

I just lost my dog (cancer) and you're right, cancer doesn't discriminate, it comes unbidden and is a destroyer.  My sweet beautiful dog that never hurt a flea, why should he have to go through this horrible suffering?  I felt kind of like, "I couldn't keep my husband and now I can't even keep my dog?!"  Life is unfair.  I don't understand why some still have their husband and dog and I'm singled out...but I know life isn't fair and it is what it is.  We can't change it.

I am glad my husband didn't have to experience me dying and leaving him alone.  Lord knows it has been hard enough for me to go through, I wouldn't want him to go through it.  The one left takes the pain on themselves.

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Jttalways

Tomorrow is my husband's funeral and I am dreading it. Did anyone else feel that way? I think i'm dreading the finalization, that its actually real, that this hasnt just been a nightmare i cant wake up from.

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Gail 8588

My husband's funeral was a blur to me.  I was totally in a zombie state, going through the motions of being there but not feeling like I was even in my body. 

I just wanted to get the funeral over with, as our son was getting married 11 days later.  I so much wanted the wedding to be happy. 

I was a zombie at the wedding too. 

Sending you strength to get through the funeral. 

Peace, 

Gail

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Jttalways

If it was just my son and I going to see my husband for the last time, piece of cake. I would like nothing else than to be alone with my husband. It’s the thought of everybody else being there that’s stressing me out. When it comes down to it, it was just my husband and I 99% of the time when he was battling leukemia. I’m anticipating around 200 people at the funeral tomorrow. 

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foreverhis
6 hours ago, Jttalways said:

Tomorrow is my husband's funeral and I am dreading it. Did anyone else feel that way? I think i'm dreading the finalization, that its actually real, that this hasnt just been a nightmare i cant wake up from.

Yes, I believe I would not have handled it well at all.  I have never been good at crying in public, so I probably would have sat there like a zombie.  I actually shocked myself that I cried so often and so openly at the hospital when he was in and out of there over a few months.  But some things simply cannot be contained, I suppose, and fear overrode reticence.  I tried to leave the room, but didn't always succeed.  Several times I just stood or sat there sobbing, "Please don't leave me, love.  Don't leave me."  I'm certain it didn't help him, but I couldn't stop myself.

This is so new and your grief so raw that you must not ask more from yourself than to simply keep breathing right now.

Some unasked for advice, if I may.  If it gets to be too much for you and you feel yourself panicking, make sure you have told someone you trust that you may need them to help you take a break.  Have a signal or something that let's that person know you need him or her to come to you right now.  If you have to go sit by yourself away from others, please do so.  What others expect from you does not matter at all.  Please do not let someone else's expectations make the day harder for you.  Do what will help you simply survive what is bound to be one of the worst days of your life.  And know that we here will be thinking of you and sending you all the love and comfort in the world from people who truly get it in a way most others cannot or do not.

As for me and my love.  My husband asked to not have a standard funeral or memorial, but to have a big party down the road when I'm able to handle it.  I honored that and had a very short obituary published shortly after he died.

But bringing him home from the memorial park/crematorium just about killed me.  It's only 3 miles from our house and a good thing too because I sobbed loud and hard the entire way.  Having them hand me my beloved with instructions on the proper way to scatter his ashes if we chose to do so was surreal, to say the least.  There was a finality in that that couldn't be denied.

Now he sits in his handsome leather cylinder on top of the entertainment center with a casual picture of him and our granddaughter taken in the months before he was diagnosed in front of him.  It's a kind of crappy snapshot type thing taken by me while we were all on a walk by the water.  They are so happy in it that you might think it would be too hard to see, but it gives me comfort.  I tell people, only half jokingly, that he's up there to keep an eye on me.

I do remember my mother at my father's memorial services (two locations; where they were from and where they lived when he died).  She was still in shock, but was clearly going through the motions of "must do A, then B, then C."  My siblings, our spouses, and I took care of many things because my never-phased-by-much-of-anything mother was absolutely unable.  She told us what she wanted and everyone helped make it happen.  It took her 6 months to fully come to grips with losing my father.  And as much as I hate to put it this way, while they were best friends and married for nearly 50 years, I'm don't believe they had the same cell deep connection my sweetheart and I have/had.

After more than a year, it still doesn't seem real sometimes.  Almost every time I come home from the market or running errands, I try to open the door without using the key.  It's as if I can't wrap my brain around the idea that he won't be in the house, yard, or his shop.  Silly, I suppose, but I've learned to accept that grief has no road map and we cannot anticipate what this dark journey will be like.

I'm sending you big warm comforting hugs from the beautiful central coast.

 

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