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The Grieving Room:  Everything looks perfect from far away

Mon Mar 24, 2008 at 06:52:30 PM PDT

"they will see us waving from such great heights, "come down now,"
they'll say but everything looks perfect from far away,
"come down now," but we'll stay..."

Hi – this is actually exme.

Please bear with me through tonight's diary – I've actually cheated a bit and revisited a post that I made almost two years ago. I will warn you that my content may be too graphic – if grief is too close at hand, or Death stands too near,  you may want to avoid my repost tonight.

I went back through some old diaries to see if any of my internal, inner workings had changed and I stumbled across this. Thought it might be an appropriate revisit for the Grieving Room series, though I've reworked it some, and edited bits and pieces to fit. Let me know what you think, and jump right in with anything you want to share.

We welcome anyone who is new to The Grieving Room, as well as our old familiar friends.  We meet every Monday evening.  Whether your loss is recent or many years ago, whether you have lost a person or a pet, or even if the person you are "mourning" is still alive ("pre-grief" can be a very lonely and confusing time) you can come to this diary and process your grieving in whatever way works for you.  Share whatever you need to share.  We can't solve each other's problems, but we can be a sounding board and a place of connection.

Unless you deal with death in your job or live in an urban area with street violence, or live with a loved one dying at home, death is not always familiar and present.

......

I have an admittedly layman's experience of death. Family members, some friends, pets; I've seen death in several stages - sometimes as it enters a room, a body, the life of a family group, and also at the moment it closes the door on a soul.

I've seen death hover in the room, quiet and present and waiting.

Years ago, I went under hypnosis to stop a nasty habit and in the final session, a very physical dark presence leaned over my right shoulder. I couldn't rise to consciousness enough to acknowledge it, and it pressed me heavily into the chair with a massless weight. As I was counted out of my mesmerized state by the hypnotist, the figure disappeared.  I knew it was Death.

I saw my father in an open casket at his funeral when I was eleven. At fourteen, I stood next to death in the bedroom where my oldest sister lay dying after an unsuccessful cancer surgery. Death came to visit nine years later, but decided not to stay, that time, as my mother became a successful lung cancer survivor, living another twenty years after surgery.

I became the instrument of death the day I ran over my new dog. Unaware that day that my new dog had escaped from the backyard, I backed out of my driveway with one of my daughters in a car seat, intent on dashing to the store for more diapers.  As I moved down the drive, I could hear my neighbors yelling across the street, not an uncommon sound, and I had no idea they were yelling at me.

There was something terrible in me, sometimes at night I could see it grinning at me, I could see it through them grinning at me through their faces, it's gone now and I'm sick.
William Faulkner

I heard a thud and realized I had rolled over something. Thinking it was a toy, I pulled forward, shut off the car and set the parking brake. There, behind the left rear wheel of my Ford Taurus station wagon, was Winston - just three months old, a miniature pinscher/beagle mix. He was on the ground and he was twisted, his head canted at a horrible angle and the front of his little, robust body broken and bleeding.

I can't fully tell of the way my heart hurt, and still hurts as I write this. I picked him up and realized that he was still alive and in such pain and that there was no way that rushing to the emergency vet was going to make a difference. I've had some tough decisions in life over the years, but I still tag the decision I made at that moment as the most difficult - in some ways more difficult than a later in life decision involving death.

I wrapped my hand, the hand that put the car in reverse, the careful hand that strapped my children into a car seat, the nurturing hand that lovingly fed those kids, and at that time in my life, the wifely hand that stroked my husband's face in love - I took that hand and placed it around Winston's neck and squeezed the breath from his body. It was mercy, to relieve his pain. Death again and I had summoned Him to hurry. It was over twenty years ago and I can still feel my gut as it roils up to clench my broken heart.

Clocks slay time. Time is dead as long as it is being clicked off by little wheels; only when the clock stops does time come to life.
William Faulkner

It's been five years now, that I welcomed Death again. My mother was a fighter of immense strength and if she was terrified of anything, it was Death. She feared Death the most, as only a superstitious Welsh woman can. I don't know why; she met and lived with Death far more than I have, or anyone else I've known.  She buried two children, a grandchild, and a beloved husband well before it should have been Death's time.  She fought off death before, as I mentioned, one of the few good statistics of lung cancer patients in the early 80's, when the lung cancer mortality rate was around 95%.  I, and my kids, arrived at the hospital in Oregon City where she was in CCU, driving from Seattle in a record time two hours and ten minutes. Death rode in the backseat on the way south, but kindly ignored my reckless speeding.

My brother and I spent the afternoon, the night, and into the early morning of the next day together with my mother as she lay in a coma, induced by congestive heart failure and pulmonary edema. My deeply responsible and caring brother is an eye doctor and his way of dealing with his intense grief, the previous months and years of stress and frustration and fatigue of responsibility for a failing parent, was to periodically check her vitals and the state of her eyes. An eye doctor knows when the patient's eyes have no functioning brain behind them. The son had a harder time with the loss of the mother.

If you are familiar with final stage congestive heart failure and pulmonary edema, you know that a patient inevitably dies from drowning and progressive organ failure. The heart muscle flops inside the chest with each sloppy, ponderous beat; now like weakening gelatin and not the strong muscle that once was there.  The breathing is not breathing, but hard labor that draws the strength out of a body with each breath, until there is no structure to support the in and out of air. The rattle, the gurgle, the deathly white color of the skin that has no oxygen in the blood, the gaping and wounded mouth that is so dry and cracked as it tries to pull in air.

Memory believes before knowing remembers. Believes longer than recollects, longer than knowing even wonders.
William Faulkner

The sounds are the worst of all, so much worse when set against the hum of machines that are attached to the body of the one woman to whom such indignity and struggle should never have been rendered.

We requested the removal of the saline, morphine and the oxygen tubes. The blood pressure was 60/40, then 50/32, then 48/30 and then it stalled and Mother struggled on. No brain function, but the will to survive can be stronger than death's impatience, can't it? I saw my brother's torn heart and hollow eyes and thought, "do I look the same?"  Everyone always calls me a younger, female version of my brother who is Clark Gable handsome. Which leaves me as a woman...well, I'm not certain where that leaves me.  I took my hand (that hand) and held my mother's face and started whispering to her. Go ahead, mother. It's time to go. Daddy is waiting. Go ahead. Let go. You don't have to work this hard. We love you, Mom. It's time to go.

It's a phenomenon of Death that a white room will fade dimly to gray, even when the lights are still on. I sat with my mother for quite awhile. There is no other texture or feel like the cold of the skin on a body in which there is no beating heart.

Other family and other people over the years. I hope my reminiscences have not been too hard to read. You'll note the way in which I write appears somewhat detached, perhaps a bit dry. It is much the same way that I verbally discuss my family members who have passed, and some find my demeanor off-putting, rather removed.

Make no mistake, this is a shield. We do what we do and how we do it, in the ways that we can. I like to think that even with death and grief, the best defense is a good offense – and meeting Death directly gives a body and a soul power, even a small power, to cope and feel. And breathe.

And grieve when it becomes necessary again.

(This diary has been modified from the original:Who could do such evil things to being save a being?)

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Here is a link to all the previous Grieving Room diaries.

Tags: The Grieving Room, death, loss, grief, series (all tags) :: Previous Tag Versions

Permalink | 72 comments

  •  oops! Tip jar... (21+ / 0-)

    Yup - this is me. Dem in the Heart of Texas has posted my Grieving Room submission tonight, as I posted my yesterday diary too late in the day per the time zone thing to post again today (Monday).

    thanks so much, Dem! (Looks like I sent you a typo, too, in that first line - "as" instead of "is". Spellchecker is my friend (though it wouldn't have caught that, perhaps).

    -exme

    "When Bigbad Shit come, no run scream hide. Try paint picture of it on wall. Drum to it. Sing to it. Dance to it. This give you handle on it." Kesey

    by exmearden on Mon Mar 24, 2008 at 06:57:13 PM PDT

  •  my mother's last day (14+ / 0-)

    was much like your mother's.   The Hospice nurse came on Wednesday and said death would come that day.   She came back Thursday (when she hadn't heard from us) - and was amazed that someone with a virtually unmeasurable blood pressure was still hanging on.  

    Mom's death came at 4 A.M. Good Friday morning, 4/6/07.   I would have wished it had come earlier for her, but her fight was hers, and not designed to make US feel better.   I always thought she'd go quietly and quickly, as soon as she knew I was there.  It's amazing that a human riddled with cancer and infection can survive for five days with no food or water - only pain medication in a patch.

    Thank you, exme - this was a wonderful read (and I loved it the first time, too).  {{{HUGS}}} to you.

    Join us in the Grieving Room on Monday evenings to discuss mourning and loss.

    by Dem in the heart of Texas on Mon Mar 24, 2008 at 07:03:44 PM PDT

  •  Sorry, didn't mean to post comment above (14+ / 0-)

    like that.  Trying to think of a way to ask if anyone else has been surprised to learn that a pet's death can be just as painful and wrenching as the death of a person.
    Normal day, nothing special going on.  I had let the kitties out for the afternoon.  Looked outside the sliding door to the deck, and there was my sweet girl Betty, stretched out taking a nap on the door mat.
    Opened the door, smiling at her.  She's so pretty, I thought.  She's sleeping so soundly, I thought.  Then I realized she wasn't breathing.  She was dead.  Not a mark on her, no clue to what disaster had come to her.  
    Betty was a rescue kitty, and when I brought her home she was very ill.  I told her I would make a bargain with her..I would care for her the best I knew how, if she would be my friend.  It was a deal.  She got better, and she was indeed my friend.  
    Hard to get over the feeling I let her down some how.  What happened, and why didn't I know about it?  She came to the door, wanting to come in..she needed me, and I didn't know it.  So she stretched out and died.
    Betty Girl, I'm sorry.  

  •   (13+ / 0-)

    I am watching the PBS documentary on Bush's War, and missing my proud patriotic military Dad so very much tonight.  He would be so sick at heart at what has happened to the country he loved and served so proudly.  Dad, I am so very sorry.

    Photobucket

    Photobucket

    1-20-09 The Darkness Ends "Where cruelty exists, law does not." ~ Alberto Mora

    by noweasels on Mon Mar 24, 2008 at 07:15:40 PM PDT

  •  A gifted and wonderful colleague died overnight (11+ / 0-)

    after a lengthy battle with cancer.

    Eric was the loving father of 3 young children, a devoted husband, remarkable friend, tireless in his service to the poor and disadvantaged, and a champion of peace.

    A beautiful human being has left us. Peace and blessings on those who will carry forward his memory.

    Let's get some Democracy for America

    by murphy on Mon Mar 24, 2008 at 07:16:45 PM PDT

  •  I would just like to virtually (11+ / 0-)

    hold everyone's hand here in sympathy.  Touching is such an important thing.  

    We do touch here with our hearts and for that I am very greatful.

    Thank you ladies and {{{{{{HUGS}}}}}} to all who stop by whether you speak or just sit with us for a few moments.

    I had a couple of good memories just spring up, today...one of my dad and I discussing the wintergreen berries that only grew in one place under one tree on his twenty acres.  He was happy that day that I still remembered where it grew and had fond memories of it.  

    That led to remembering the time when I was about twelve...a preteen who was not always nice.  But one day my mom sat down with me in a patch of wild strawberries that were specially big for wild ones and we ate them, together, and she did not get up and hurry away.  She did not say that we must share them...we just sat, alone without the other kids, in such peace and it makes such a good memory remembering that one time-out from her busy, harried life.

    May you all be visited by some good memories.

    Join us at Bookflurries: Bookchat on Wednesday nights 8:00 PM EST

    by cfk on Mon Mar 24, 2008 at 07:26:48 PM PDT

  •  I can never bring myself (16+ / 0-)

    to share what's in my heart when these threads post.  I read, rec, and tip in respectful silence.

    One day I will - when I can form the right words.  I just wanted to stop by to say thank you, exme and Dem in the Heart of Texas.

    exme, you're writing still leaves me in awe.  Again, thank you.

    "Ancora Imparo." ("I am still learning.") - Michelangelo, Age 87

    by Dreaming of Better Days on Mon Mar 24, 2008 at 07:28:36 PM PDT

  •  Heartbreaking (12+ / 0-)

    This is my first visit to the grieving room, and I can sure use it today!

    exme, your story is heartbreaking.  

    My grandmother died of pancreatic cancer 2 years ago.  She fought the disease for a year and a half.  I was one of her two caregivers--the other was my aunt.

    My grandma meant the world to me.  My mother (her daughter) has Borderline Personality Disorder, and made any relationship I could have possibly had with my grandma as a child intensely difficult. When I was old enough to leave home, the first thing I did was "create" a relationship with my grandma.  

    My mother was with grandma the day she left for the hospital for the last time.  Ironic, as the whole time she was ill my mother wasn't there at all.  I tried calling grandma for three days with no answer.  That wasn't completely surprising, as she would often stay with my aunt when she was getting lonely.  I finally called my aunt to talk to grandma, and was told she was in the hospital.  Under normal circumstances, I was the first to be told.

    At that point, my mother and I had not had any contact for two years.  I was in therapy trying to relieve myself of guilt I shouldn't have been harboring...I felt guilty for ending my relationship with her, though any sane person would have done it years before I did.

    And thats why I didn't get the phone call.  It wasn't about grandma, it was about my mother.  I went to the hospital to see grandma the next day, assured by my aunt that she would pull through "like she always did."  

    The woman in the bed was not my grandma.  She was a shell.  She was hooked up to machines I'd never seen her hooked up to before.  Her eyes were closed, her mouth was wide open, and she didn't make a sound when I held her hand.  I left the room already knowing she was gone.

    Three days later I got a call from my aunt.  "We had to let grandma go last night."  Last night?  Where was my phone call?  "Everyone was there, and we surrounded her bed, and when they took her off the machine, she held on.  We didn't want to, but we had to let her go."

    I was the only one they didn't call.  Cousins were there that hadn't seen grandma in years.  Aside from my aunt, I was the only one who took her to chemo treatments, doctor appointments, got her groceries, cleaned her apartment, and they didn't call me.  When I asked why I didn't get a call, "Well your mom...."

    So for two years, I've not only grieved losing one of the most important people in my life, I've also had to try, unsuccessfully, to get over the anger toward my mother for being so selfish as to deny me and her own mother the chance to say goodbye.  

    And I imagine, if I had been there for my grandma as you were for your mother, my experience may have been quite similar.  But I'll never get the chance to say goodbye.

    •  I am so sorry (8+ / 0-)

      {{{{{{HUGS}}}}}}

      Join us at Bookflurries: Bookchat on Wednesday nights 8:00 PM EST

      by cfk on Mon Mar 24, 2008 at 07:32:50 PM PDT

      [ Parent ]

    •  asherrem - your story (9+ / 0-)

      is heartbreaking - in two ways.  

      First is the loss of your grandmother to pancreatic cancer, which is what my mom died of.   We're coming up on two years since the day of her diagnosis (3/30/06) and one year since her death (4/6/07).  Losing her sucks more than I can say, and I can tell it is the same with you.

      The other heartbreak is the way your mother took this awful event and made it worse.  I think it is probably better to have had a great mom and lost her to having a mother who basically twisted the knife, but is with you still.  

      I'm so very sorry for your loss, and the manner in which you had to deal with it.  I hope you've found some comfort.   Remember - your grandmother (and your relationship with her) is NOT defined by how her life ended (and your presence there or not).

      You don't have to get over the anger - it will mellow when it's good and ready.  Just try to let that come and go as it must, and focus on honoring your grandmother with gratitude for being such a wonderful surrogate parent to you while she was here.

      Join us in the Grieving Room on Monday evenings to discuss mourning and loss.

      by Dem in the heart of Texas on Mon Mar 24, 2008 at 07:40:57 PM PDT

      [ Parent ]

      •  Thanks Dem (8+ / 0-)

        Never thought a political blog would make me bawl :)

        Pancreatic cancer is just...I can never come up with words to describe it.  Grammy (as I called her) was definitely in the minority as far as surviving so long after the disgnosis.  I am so sorry to hear you lost your mother to this ugly disease as well.

        I have great memories of grammy, and those are usually what get me through.  But every year, right around grammy's birthday, the memories are pushed aside by what my mother did and the people around me have to deal with a grumpy butt for a while :)

        Thank you so much for your very kind words.

        •  my mom was "Grammy," too... (5+ / 0-)

          I still refer to her that way - I knew her more as Grammy in the last ten years than I did as Mom.  It was just her name, once I had kids (she picked it).

          Sounds like your Grammy was just as marvelous as mine was. I'm glad you have such great memories - I do, too.  That helps a lot.

          Pancreatic cancer is the worst thing I've ever come across in my life.  I had no inkling until my mom told me she had a tumor on her pancreas, and I did my first google search.  Talk about a pit in the bottom of your gut.

          Join us in the Grieving Room on Monday evenings to discuss mourning and loss.

          by Dem in the heart of Texas on Mon Mar 24, 2008 at 08:41:18 PM PDT

          [ Parent ]

    •  Oh, sweetheart. She knows very well (10+ / 0-)

      how much you love her.  We have a great deal in common, asherrem, when it comes to moms and grandmothers.
      When I met my grandmother for the first time, I was smitten.  Small, slender woman, soft dark hair with silver at her temples.  She was so elegant, so lovely, and so very very kind.  The kindest person I have ever known.
      To a kid frantic to remain invisible, not to attract attention (with excellent reason) she was like rain to a thirsty weed.  
      She loved me for no reason, without expecting or needing anything at all from me, and I loved her with everything in me.
      She made me strong enough to endure what must be endured, and to escape it when escape became possible.  
      I believe one of the rewards given a good person is that they know all about the love stored in sore hearts for them.  Your grandmother knows perfectly how much she was treasured.  She changed your world, and her reward will be to see her love for you passed on by you to someone who needs it as badly as you did.  

      •  You are so kind (8+ / 0-)

        Honestly, I don't know if I can take this.

        I'm sure you can imagine that words as beautiful as these have been few and far between in my life.

        •  I'm going to make a wild guess here.. (8+ / 0-)

          sometimes you wish your mom had been thoroughly evil.  The very fact that she could be, upon occasion and without warning, like a normal person toward you, and even (rarely) NICE to you, just confused the heck out of you, and made you feel guilty for being mad at her, right?
          Tried very hard to find reasons for her, excuses for her cruelty.  She must be desperately unhappy, she must have had a hard childhood, etc.  But then you'd catch her with that hard little smile..the one that told you it was fun to hurt you.  She was cruel because she liked it.
          The goal here has to be indifference, asherrem.  Right now it's unreasonable to ask yourself to forgive her everything.  You'll get there eventually, but for now, just work on being impervious to those arrows she still sends.  Why she does these things is irrelevant, at least for now.  

          •  So you've met her? (7+ / 0-)

            I'm not sure how much you know about BPD (a lot from the sounds of it), but I was the "black" child.  Of her three children, I was the one who took the brunt of her cruelty.  

            You are so right about indifference.  I'd love to hate her, and in fact have tried really hard to.  I just don't have it in me.  I wish she could say the same.

            •  You've already pulled her fangs, dear. (8+ / 0-)

              By cutting off contact, you refused to allow it to continue.  You removed yourself as a target.  That's why she did what she did about your grandmother.  She wants you to know she can still hurt you, that you're still under her power.
              But she can't take away from you the love that flowed between you and your grandmother.  She wants to destroy it because she can't touch it, she can't have it, and she knows it.
              She's an old wolf, toothless and at bay.  And you're not the helpless little girl you used to be, either.  You can't help loving her anyway, darling.  Despite everything, you love her.  Just don't let her use it as a weapon.  Love her with full knowledge that she doesn't deserve it.  Love her knowing full well she will never change, never say she's sorry, never BE sorry for the pain she's caused.  Love her anyway, and reach for pity.  And the last power she holds over you will just..slip..away.  Hold your head up high, asherrem.  You've been strong and true.  

    •  asherrem...I'm sorry and I can relate. (8+ / 0-)

      even if I can't completely understand why people do the things they do. I don't even know much of the time what motivates me.

      It's possible that I made a bad decision that day at my mother's CCU room.

      I gave my oldest the choice to go in and see grandma and also my two youngest daughters. Their ages were, at the time, 16, 14, 12.

      I was quite persuasive though, that they really consider not going in to see her. I had gone in first.

      She was, as you describe, a shell. There was no recognizable "Mayme" there; she already looked like a corpse. No color, no sound other than a horrible gasping, rattling struggle. Her mouth was gaping open and I swear I will always associate that sight with Edvard Munch's "The Scream", I'm sad to say. They'd taken out her false teeth, you see, and there was only one other time I had seen my mother voluntarily take out her teeth in public - during her cancer surgery twenty years before. She was wholly and completely vain about her mouth and she had a fine set of teeth and a spectacular smile - always. Her high school yearbook had the personal motto "Smilin' Thru" underneath her photo, and, indeed, that smile lasted 86 and half years.

      So to see her like that, and know that her distress at her grandkids seeing her like that would be overwhelming, I did my horrible best to convince the kids not to go into to see her. I stressed that we had just visited with her two weeks prior and that picture was the one that they should hold in their heart and mind...not this one, this last haunting scene.

      Subsequently, my girls agreed. I privately waffled at the time between whether I should bring them in or not, anyway, for closure.  But we were going through so much at the time. I was in the midst of a divorce (my soon-to-be ex called me up that night to inform me that we would have to move from the house the next weekend, because he had just signed the closing papers with a buyer), the girls were struggling in school and we had no idea where we were going to live or what schools they would attend - even at the end of August, which this was.

      But I couldn't bear that they should carry that last awful, uncharacteristic picture of Mayme in their heads as the last one vision of her.

      To this day, we all still discuss that decision. One daughter feels anger still, one is troubled, the youngest is not certain how she feels.

      I don't think I made the right decision then. But it's something I can't rectify now.

      We all carry a lot with us as we go along, don't we?

      Find peace, asherrem. It's there somewhere, I know.

      "When Bigbad Shit come, no run scream hide. Try paint picture of it on wall. Drum to it. Sing to it. Dance to it. This give you handle on it." Kesey

      by exmearden on Mon Mar 24, 2008 at 08:08:27 PM PDT

      [ Parent ]

      •  exme (7+ / 0-)

        You did what you did to protect your children.  Whatever they feel now...you gave them a choice.  Being a parent is hard.  I don't know, I kind of think a mistake made out of love really isn't a mistake at all.

      •  exme, if it helps - (5+ / 0-)

        Recommended by:
        x, churchylafemme, cfk, exmearden, asherrem

        I was the only child of my mom to see her like that - almost exactly as you describe your mom (though my mom had her teeth - albeit horribly unbrushed).  I remember contemplating the dried up lump that was her tongue, sitting in that slack jaw.  Her skin was grayish, and the wispy hair that had survived the last round of chemo was sort of plastered on there, haphazardly.  She really looked like some kind of zombie, and she already looked dead... and it was like that for four days - eyes staring, unfocused - seemingly with no cognitive activity at all.

        I am glad my brothers were spared that, and there is NO WAY IN HELL I would have allowed my kids to see her like that.  It would have frightened them, and they'd have had nightmares (I know I did).  It took me a good six months to replace that image of her with the "real" mom image that I much prefer.

        You were right, and you should let your kids read this post.  They were kids, and they NEEDED your protection (as hard as it was).  You made the best call you could have made.

        Remind your daughter (the one who is angry about this) that her relationship with her grandmother was not defined by whether or not she got to see her in her final state.  That is but one day in all the days they shared together.   She might think now that she would have wanted to see her, but you gave her the gift of never having to see something so much worse than she could have imagined it.

        I am glad I was there with my mom - it was what we both wanted... but it was HARD to take, and I don't think she would have wanted anyone else to see her that way.

        Join us in the Grieving Room on Monday evenings to discuss mourning and loss.

        by Dem in the heart of Texas on Mon Mar 24, 2008 at 08:50:38 PM PDT

        [ Parent ]

    •  I got a call a few years back (8+ / 0-)

      Nine to be exact, from my sister. All she said was "She didn't make it."

      I had no idea- a cake perhaps?

      I asked "Who didn't make what?"

      She said. "Mother. Mother died today."

      I screamed, cried, made some REALLY freaky sounds, scared my children. I had driven the hour to visit her the day before, she seemed fine.

      Another sister visited her the morning she was sick, and took her to a doctor, who yelled "What hospital do you want her to go to?"

      Apparently she had a stroke during the night, with some heart failure. She was sent to ICU- a heart doctor never made it in to see her.

      Chaos ensued. Me, my oldest son, the sheriff (a friend) and another person went to the hospital where she was- they gave us the runaround. The sheriff made a phone call- found that mother was already at the morgue. I did get to see her that night.

      What a day.

    •  {{{asherrem}}} (5+ / 0-)

      Your Grandma knew you loved her.  Let that sustain you.

  •  Part of this is reposted from a blog of mine... (12+ / 0-)

    ...which I set up to allow people to get updates on my husband Richie's progress during and after his stem cell transplant, so I'll blockquote. However, I have further comments after the blog post.

    3/20/2008:

    Apparently the relapse hit Richie way harder than we thought it would...the blow was lethal. The fight is now over and Richie went as a warrior.

    This morning, Richie and I said "see you later" as he went out to City of Hope to get his chemo. He drove there, he drove back, and I got to talk to him when he got home as I was on my way to an important meeting with a specialty employment agency. If it weren't for cellular phones we probably wouldn't have talked then. I was glad he made it home safely...Richie's weakened condition always made me nervous. That was 1pm. At roughly 1:30 he called me to remind me that I needed to pick up some nutritional drinks for him on the way back...I think he called because he wanted to hear my voice one last time, and it was good to hear his voice too. I was totally unaware that he really was hearing my voice for the last time.

    After the meeting, which was highly promising, I called to let Richie know how well it went. I got the answering machine. I called back a few minutes later, thinking that perhaps he was just answering nature's call. Answering machine. I called a few minutes later, hoping that maybe I just caught him sleeping deeply. Answering machine again. Oh SHIT.

    I told the answering machine that I was going straight home to check on him, that I'd go right back out to get the "boosts" (we had fallen into the habit of calling nutritional supplement drinks "boosts" generically after the particular name brand "Boost.") after I had made sure he was OK.

    Got home. Not OK. Not there anymore. I got on the horn to 911 immediately, and within a few minutes (911 is not a joke in Panorama City, thank you Fire Station 7, thank you Mission Division LAPD) the paramedics were there. They confirmed what I already knew, and what I was trying to tell the 911 operator who was trying to lead me through CPR. That ship had sailed.

    However, it is very important to note that Richie went HIS WAY. He didn't want me to see him die. We had watched together as my mother passed painfully and fearfully from end-stage colon cancer. He didn't want to inflict that on me. He didn't want to die in a hospital, not even one as inviting and hotel-like as Helford Clinical Research Hospital at the City of Hope.

    I don't believe in an afterlife anymore, no matter how inviting the concept is, but I think there was a little of his essence hanging around as I made it abundantly clear to all family members who I talked to that no, Richie didn't want to have a Jewish funeral, he didn't want people to sit shivah for him, he didn't want to be buried at Mount Sinai with the rest of the Good and Klein clans, he just wanted to be cremated, and have half his ashes scattered in the Pacific Ocean and half scattered on the Hudson River, within view of the coastline of the New Jersey of his youth. He felt like half of him was East Coast and half of him was West Coast and that somehow he would be present on both coasts in his passage. Amazingly, nobody objected. They objected mightily when I told my family that I didn't think that my mother wanted an open casket to see her emaciated body after her year of battling colon cancer, and they had an open casket over my objections. This time they acceded to my wishes, and most importantly to Richie's wishes.

    So he has passed out of existence his way. Unfortunately it was way too early and way too young but at least he did it on his own terms. There is a hole rent in my heart now that will never heal. It's like why gangbangers tattoo tears on their faces...they have tears that will never dry and so will I from here on out. However, to make this death not be in vain, I pledge the rest of my life to work towards supporting research to find cures to all blood cancers. All of them. Myeloma sucks and so does acute myelogenious leukemia. So do the other varieties of leukemia and lymphoma. They all must be terminated with extreme prejudice. Richie is gone but there are thousands and thousands fighting this battle too. Saddle up, lock and load. Blood cancer is the enemy, and the war isn't over.

    Back to current comments -- I also think that if we did not have a dysfunctional health care system maybe Richie's myeloma could have been caught before it got symptomatic. When people have actual comprehensive health care they occasionally get screened for silent cancers like myeloma. When myeloma can get caught before it becomes symptomatic there is far better control than when it presents with symptoms.

    When you start seeing stuff like unexplained anemia and fatigue, or when there are breaks in brittle bones, the myeloma has already gotten to stage 3. And as you can well imagine, it's harder to treat at that point. I think it is safe to say that Richie was a victim of our lack of universal health care. There is no excuse for it. It's another cause I will be pursuing for the rest of my life.

    Anyway, I'll probably be processing this loss for years. I cry...a lot. But most of the time I've been keeping it together enough to get stuff done. I've even had a few laughs.

    The idea is to celebrate my musician hubby's life with a concert. His musician buddies put together a benefit gig last year, but I'm not sure if I will be able to organize something that big and that impressive this time.

    Anyway, if you go here, you will be able to see a tribute a local musician made to Richie on LAist.Com. You'll also be able to see how little Pris from LA resembles Daryl Hannah and more resembles an aging Russian Jewish tante.

    Thanks for listening.

    McCain = Death.
    "I'm tired of being afraid." -- Michelle Obama

    by Pris from LA on Mon Mar 24, 2008 at 07:40:01 PM PDT

    •  {{{Pris}}} (8+ / 0-)

      I dont kow how long you and Richie were fighting this fight, but I am guessing that (along with your grief), you're dealing with a huge change in the routine of your life as it has been.

      Writing is a wonderful outlet, and I'm happy to see that you're well aware of that.  I am sure you're correct that Richie went as he had hoped - sparing you from watching him draw his last.

      Myeloma (and cancer in general) sucks.  The only comfort I could take in my mom's death is that it took her tumors with it - they died with her, so that particular cancer is gone for good.

      I will go check out your links.  Thanks for sharing all of this with us.  Clearly, there's a place for you here.

      Join us in the Grieving Room on Monday evenings to discuss mourning and loss.

      by Dem in the heart of Texas on Mon Mar 24, 2008 at 07:45:24 PM PDT

      [ Parent ]

      •  Richie... (6+ / 0-)

        ...was diagnosed on December 26th, 2006. He went into treatment at the City of Hope in late January 2007. The treatment, a monoclonal antibody with the brand name Velcade, plus the chemo agent Doxil and the steroid Dextamethasone, put his cancer into complete molecular remission in June of 2007. The remission lasted until late February/early March of this year. Everything just went down the rabbit hole from there.

        Richie got an autologous (his bone marrow stem cells) stem cell transplant on September 10th, 2007. He died ten days after the 6 months post-transplant mark.

        Was the stem cell transplant worth it? I'm not sure. SCTs are supposed to give people remissions that last years, not mere months. However, you never know if a given patient is going to be one of those patients who gets a complication and dies during the transplant, who never gets engraftment of the new stem cells after the bone marrow is burned away with heavy chemo; or if they are going to be one of those patients who lives for decades afterward; or if they will just get a few months before the myeloma roars back with new mutant vigor. You never know before the SCT is a done deal, and you are stuck with whatever the SCT does.

        Was it worth it? I asked Richie about that as we were driven home after his stay at Helford Clinical Research Hospital. He said "You have to give it a chance. Everything is a gamble, however. But what's worse is not taking the chance at all."

        Gary Gygax, the guy who popularized the Fantasy Role Playing Game, was asked about death before his demise, in a very typically FRP kind of way. I think it may bear repeating here.

        GM: "You've come to a wall. The wall is the end. It's death. What do you do?"
        Gygax: "I jump over it. When you come to the end and you can't go any farther, you've got to go over the wall. Gotta see what's there."

        McCain = Death.
        "I'm tired of being afraid." -- Michelle Obama

        by Pris from LA on Mon Mar 24, 2008 at 08:02:41 PM PDT

        [ Parent ]

  •  My dear exme (2+ / 0-)

    As usual, your honesty is a purifying fire, burning away the emotional padding and the euphemisms we use to separate us from our feelings.  It's a thing of terrible beauty, this way you have with words.  It bores straight to the Souls of those of us who read it -- and we respond in kind.  As well as we are able.  

    I'm late to the "party" and I don't know if you'll read this, but I thank you.  Your diary, and the comments it has inspired, have -- I think --reached a place in me I've been avoiding.  I think I'm ready to examine that place.  A little.

    Again, thank you.

    The chips are down. Find your outrage.

    by sj on Tue Mar 25, 2008 at 10:15:00 PM PDT

    •  thanks, sj. I appreciate the comments. (1+ / 0-)

      Recommended by:
      sj

      I find I'm winding down on being able to create a decent diary for this series. Not sure what this means. Maybe that it's time for me to step back, let things settle awhile. I've been in that mode a bit for this entire site, as the air here lately has been a bit occlusive, if you will.

      But I've recently decided that I need to return to posting again, if only to provide a different glimpse beyond just the usual candidate diary so prevalent. We'll see.

      I'll be posting one more GR diary in April, around the year anniversary of Sharon's (my sister) death, and then I think I'll just be a commenter. Unless there is a day where a fill-in is needed.

      thanks so much for reading, sj. Take it easy on yourself.

      "When Bigbad Shit come, no run scream hide. Try paint picture of it on wall. Drum to it. Sing to it. Dance to it. This give you handle on it." Kesey

      by exmearden on T