Nothing special just musing

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Comment by Cristina on June 28, 2012 at 9:04pm

gcortez, I was so staggered by what you wrote I couldn't even respond to tell you how sorry I am for what you went through, until now.  My heart is with you, and I so hope for your peace of mind and for the healing they say will come to us with time.  What you went through, what your husband went through, is just unthinkable.  Sending you love and compassion and understanding.  Somehow, someday, these memories will ease some.  I know I read a novel not too long after I watched my mother suffer horribly into death, cancer as well.  Nothing about the book mattered except this line: "She would want you to remember how she lived, not how she died."  Obviously, we have to deal with these horrific images and memories, but this seems like a signpost, a guide, to keep reminding ourselves.  The dying for them, though long and full of hardship and unimaginable suffering, is over, it was over when they passed.  We are the ones still reliving and reliving it.  I think my Billie would be reminding me gently, it's over for him, to somehow remember that and try not to carry it any longer than we absolutely have to.  Remember how they lived, not how they died.  At least it's a good goal.  I ain't anywhere near that, but it gives me some guidance.  We have to process what we saw, there's no skipping that.  And there is some value, I think, to having a witness.  Having someone at least hear, at least once, what it was.  My counselor says I/we have a similar thing to what happens to combat veterans.  We see these heart-wrenching atrocities, and we have to work out a way to live with them in our psyches.  Part of that is letting it out to those who can handle it, often only others who've been through something similar.  The way vets will often only reveal to other vets, what they saw and went through.  Bless us all, on this terrible journey.  May we find Light along our way.  May we sometimes be each others' Light.

Comment by Eileen on June 27, 2012 at 11:19pm

That is hard for me to say because my husband died 6 weeks after diagnosis and any implication that he would die was met with extreme resistance by me (we thought transplant would be curative).  He also died on Aug 7 but nearly 6 years ago.  There was some suffering at the end that could have been alleviated by hospice I am sure but again it happened so fast I did not have time to enter a different phase.

Comment by gcortez55 on June 24, 2012 at 10:00pm

omg, (((christina)))...

The subject of palliative care and hospice care in my late husbands dying experience really still burns a fire in me. Close to 2 years later and I still have rage inside that could move mountains. I wont go through it all but the last day is the hardest. When i finally got him home (had to lie that he was discharged to bring him back before the pain was too intense for him) the hospice nurse came to intake. It was in the afternoon, she said that the dr, and his nurse, care aids, social workers would be here in two days. I told her that i knew him well as his caregiver and that he did not have that long, i wanted the dr. to come make sure he has enough pain meds now. she laughed at me and said, "oh honey, i've seen this before. i'd say he has 2 more weeks without food and lots of water". i said to her, "look, the palliative care team said he had 7 more years yesterday and i told them no he doesn't. He has a rare disease that has had a constant progression within the last 7 months. I NEED the FUCKING DOCTOR TODAY!" Then she said something, but i couldn't understand anymore or respond. i had a mental breakdown 3 weeks before, my mind and speech (would be gibberish) went out at that moment. long story short, he died 13 hours later, i called for them to come that it was time. They said that it would happen before they got there and that any pain meds they gave him would not be absorbed by his body in an oral form, to call back after he passed. An hour and a half later he died after a huge struggle, my hands were bruised from him holding on. the whole time he was flaring his arms and legs, turning purple and blue, grunting, shaking back and forth as if someone were holding a pillow over his face and he was trying to get air. my little kids were thankfully asleep and didnt hear what was going on. but hospice wasn't here. 

okay, cant talk about it anymore. anyhow, no i'm not from NY but i was just in the city. felt right at home :)

Comment by Mark99 on June 24, 2012 at 7:18pm

Cristina I am so sorry to hear this story and what you faced and went through. It again speaks to the need for the medical professionals to speak to one another. And if I may add for us as caregivers to be as educated as possible so we know when to put the brakes on shit like this. But that is easier said than done. I will hold on to your story as an example of what we have to fix. 

My thoughts and prayers are with you tonight. 

Comment by Cristina on June 24, 2012 at 5:31pm

Mark, this one is so loaded for me I am not sure I can even tackle answering it, but I'm going to try.  When my Billie was in the hospital for the last time, with a tracheostomy and pneumonia, we didn't know he was dying.  We only found out about the cancer being back a few days before he died.  But this is how it happened: his care team were not all talking with each other.  The oncologist came in and saw him, the day it came out about the cancer (I was told about the cancer by a nurse who let it slip....no one had bothered to tell us, although they did apologize profusely when they realized their error) being back.  He told us it was in Billie's lungs and his spine.  And that they would do a biopsy of the spinal lesions.  The next morning, suddenly there were the strong guys there to move Billie downstairs for a biopsy...a lung biopsy.  He had tried to have a lung biopsy a year earlier, in 2010, and had been prepped and was waiting to be wheeled in and the doctor came in and said, I'm sorry, but with your COPD I cannot safely do a biopsy on your lung.  There is a 100% chance I will collapse your lung if I do.  Your lungs are in too bad of shape for this.  So, when the guys were there outside our door in 2011 saying they were taking him downstairs for a lung biopsy, I freaked.  Billie, bless his strong heart, had wanted to do some kind of biopsy, because depending on what type of cancer it was, (he'd survived esophageal cancer for 6 years at that point) he was willing to fight it if he had any kind of chance.  This from a man with a feeding tube and tracheostomy.  He loved our life, he loved me, he loved life.  We'd only just fallen in love 2 years before.  But when I balked at the lung biopsy, they took him/us downstairs and the doc there said, ask questions, take your time, we don't have to do this now if you don't want...but he said, oh, no, it's only about a 30% chance we'll collapse your lung, and if we do, no problem, we just insert a chest tube and reinflate it!  Couple days later, we'll take that tube out.  So, Billie agreed, he was too damn courageous, he was.  Plus he was a man who always wanted all the facts, before he would make up his mind about important stuff.  So, I went to the waiting room, absolutely hysterical.  The nurses behind the desk were kind, took me back with them and let me call Billie's sister....I was shaking so hard and going into shock myself at that point, they wrapped me in a blanket and called clergy to come in and be with me.  Well, what happened was this: they collapsed the lung.  They inserted a chest tube.  Several hours later, the tube failed, and Billie went into massive subcutaneous emphysema.  Mark, you are in the medical field, you know what this means.  I suggest anyone else reading this NOT look it up - it is absolutely the most horrifying thing I have ever seen in my life.  I was completely unprepared for the twilight zone of hell we entered.  My heart is pounding even now as I write this.  My point to you, Mark is this: when our hospitalist, our main doctor found out, she was furious with the oncologist for even attempting a biopsy, I mean, she was like, all the other docs on the team, pulmonologist, pain specialists, etc, were all for putting Billie in hospice.  They didn't want any more procedures done to him...he'd just had the feeding tube replaced the day before...it was just nonstop, all the procedures....and he was so weak....she actually cried at the side of his bed, seeing him like that, after the subcu. emphysemsa.  I mean, who wouldn't?  He was blind, now, on top of everything else, including not being able to talk even with the electrolarynx anymore, he could barely move his fingers to use sign language with me, also he was essentially paralyzed, in agony over every inch of his body....it was insane, like I've never seen insane - it was pure hell.  Our hospitalist was so angry that the oncologist hadn't talked it over with the other docs who had been treating Billie for over a week and a half....anyway, finally, finally I was able to convince my beloved man that it was time to go palliative.  And yes, it was too damn late, he should have been in already, and then that horrible, stupid biopsy would never have happened, and he wouldn't have suffered so extensively, oh, my god, it was so bad...he was dead three days later.  I hope that gives you some kind of useful information, Mark, that you can convey back to the medical community.  I have to go cry now.  thanks for what you are doing.  I wish you peace. 

Comment by Mark99 on June 24, 2012 at 4:15pm

Gcortez55. Thanks for the wonderful insight. Okay that was weird to say wonderful at the horrific shit you went through. Wonderful because I used your quote without your name in a post on palliation. If it is not okay I will remove the quote. 

PS Love the use of fucking... so cool on here... you a new yorker? LOL

http://tiny.cc/jubfgw

Comment by gcortez55 on June 24, 2012 at 11:47am

Mark, dude. HELL YES! I tried so fuckIng hard to get these services sooner. 3 hospices denied him within 1 month before his death. Pallative care was offered 3 days before he died, this made me laugh at them. His suffering could have been brought down to a bearable level for him and us if they had only put him on hospice or pallative care.