what are you waiting for?

January 26, 2014 at 6:37 pm (death, end stage congestive heart failure, gratitude, heart failure and exhaustion, how does it feel to die, living with dying, testing for kidney failure, the dr. says)

As you may know we have done some traveling in the past few months.  There are stories to share and some pics to post.  So why haven’t I done this?  I have been waiting to feel better.  The problem with that is I am not going to feel better.  This is the new norm for me.  Don’t get the tissues out just yet.  Though my latest lab results confirm my decline they also inspire me.  Isn’t life just a little bit dearer when we are in a moment like this?

There is no doubt I love and appreciate my family and friends.  If I were healthy would I have such acute awareness of my blessings? I hope I would but know that life can get in the way sometimes and we aren’t always as thoughtful/mindful as we could be.

The lab results for my creatinine, bun and potassium were high so according to webmd-

A BUN test is done to see how well your kidneys are working. If your kidneys are not able to remove urea from the blood normally, your BUN level rises. Heart failure, dehydration, or a diet high in protein can also make your BUN level higher. Liver disease or damage can lower your BUN level. A low BUN level can occur normally in the second or third trimester of pregnancy.

Tests that give insight as to how your liver is working show that mine is in a down ward motion.  I could likely use a blood transfusion at some point.

So those are the technical results that confirm what my body is telling me.  It asks the question, what are you waiting for? This is the new norm. be grateful and do the things that are important to you.

What are you waiting for? Is it time to stop waiting and start acting? I don’t want to miss out on anything.  No more waiting for me.  I hope no more waiting for you; life is too precious to spend it waiting.

p.s. the caps are because I did this on word and just copied it here.  It means nothing that I don’t usually cap and have on this one:)

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what i see

December 5, 2012 at 12:45 am (ask the doctor, being remembered, dying, hope, how does it feel to die, living with dying, road trips, the dr. says) (, , , )

what we see, really see, is up to us.  as we were driving home, less than a mile from our home, i looked over and saw what i have seen for the 5 yrs. we have lived here.  there are 3 buildings not far from the side of the road. one is a small shotgun style home, the second looks like a one room shack, the third is a metal  storage shed that has been converted to a home.  they are all very close together and through the seasons i have watched the people who live there coming and going.  i have wondered how they live, how do they do it?  these are not homes with central air, the converted storage shed concerns me.  i have seen the person who lives there and i wonder how they manage. they can’t have running water, heat in winter and air in the summer.

as we drive by i observe that it is remarkable our home, our world is less than a mile from the world the blue house people live in.  do you think about them and wonder what their dreams were?  the reply comes, no, can’t say that i have.  we both look at those little homes everyday we drive down that road.  i see what he sees.  yet there is something amiss here.  he is kind and generous, he is loving and socially aware of what goes on in the world. he does not see what i see.

you may ask, and well you should, what has this got to do with death or being terminally ill?  i have been asking myself that very thing for over an hour. i have sat here poised to write one thing and yet this thing keeps coming into view.  let me see if i can make the connection, bear with me please, i am not a great writer.  i am not a great speaker either so that would leave mime but you wouldn’t be able to see that would you? no, you would not see me.

we are to the universe what a grain of sand is to us.  the very thought of the entire universe is too grand to see in my mind. it is limitless and so it makes sense we would not see the edges.  the world is more visible to me, in my mind.  the world is such a vast destination.  so many people, cultures and countries. some i am sure i have never heard of even though i am considered a world traveler.  i drove across the united states, nearly three thousand miles.  even then i knew i was only seeing a small part of our country.  georgia is a beautiful state.  i was stationed here when i was in the army.  my oldest step-daughter lives in atlanta, the youngest in charleston s.c. so off from sacramento california we go to be with our family.

local people speak of this county or that ( i think there are a million or so here) and i still, after 8 yrs don’t know where they are talking about.  if we get down to it there are places here in this small town that i have not been to. some of these places we have driven by or maybe even been to and i did not really see where we were.  for some reason i see people not geography.  it was a joke in my platoon to never give me the compass.  most times i could find my way but not by the most trusted tool we had.  i saw a tree with a scar on it or the rock that looked a bit like my dads nose.

so as we sit at the local eatery and the man across from me cries, i see it.  from the moment it began i saw the familiar signs of what was coming. at first i have to confess i was a bit confused and not sure i was seeing what was right there for all of us to see.  afterward i asked, did you see him crying?  he answers he saw something but wasn’t sure what it was.  we are so used to seeing a woman cry that we are found wanting when it is a man.  whenever we go to dinner the questions are the same, what do you see?  what do you hear?  i wonder how can a room full of people not see this man’s pain?

i see the stars and know they are part of the universe.

i see other countries and know we are a part of a whole world.

i see the city limit and know that i am part of a country, a state and a town.

i see you and i see a future. a life with many years to live. a life with hope and dreams.

i know what i see, in the world, the country, my home and in your eyes.

the question is what do you see and do you really see me?  i will one day be as intangible as the universe, the stars and even the people down the road.

i want, no i need to know that i was really and truly seen. i need to know that i will be remembered.  i don’t want to be the people down the road who are never really seen.

i wonder if the blue house people want to be seen or are they happy with just seeing their own world?

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however many you have

December 2, 2012 at 2:51 am (how does it feel to die, living with dying, pain, pain medication, the dr. says) (, , , , )

last week was difficult at best.  tuesday i went to see the dr. and he recommended i go in the  hospital. no, i don’t think i can do that i say.  moving on, he tells me we can do all the tests and go from there. i think i can do that.  turns out i passed a kidney stone.  have to say when he offered me pain relief i thought it best to take it even though i thought i could make it without them.  i could not walk without his strong arm to hold me, and as much as i love being on his arm, the next day i think i can manage on my own.  there is something about my creatinine level creeping higher so …… and the liver is becoming cirrhotic. i think i can say that my disease has progressed yet not at the speed expected.

sitting in one of our favorite restaurants, talking about our impending cruise, is say -i think i can do five more years.  seriously, don’t you think i might do it?

he reaches across the table, looks so lovingly and says- i believe you can. maybe you can do 20.

my heart aches when he says things like this, so i respond- i will give you all i have left. however long that is.

he smiles and says- however many you have he will take them. then he says “i don’t know if i have 20 left to give you”

however many you have… i will take them.

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no words of wisdom here either

November 30, 2012 at 12:10 am (bravery, death with dignity, dying, how does it feel to die, living with dying, the comeback, the dr. says, words of wisdom) (, , , , , )

today i had the opportunity to read a blog written by the brother of the comeback.  i was not surprised to see that craig is as talented as his brother shane.  what did jump out at me was his declaration that he had no words of wisdom.  some of us do feel as though the healthy community looks at us to have answers to questions we all have, in addition many of us feel as though we have to be strong for others. it is up to us to make sure that the healthy friends and family are not made to feel guilty when they are not being the kind support we need.  we are taxed with supporting them through their angst over our imminent death.

this is not like most of my blogs and i am not sure why.  reading craig’s blog made me start thinking about the reversal of support.  should someone make the sacrifice of coming by to see us? they have things to do and places to be don’t they?  our healthy friends and family can’t be expected to actually go through that uncomfortable visit when they could be doing something fun should they?  i know that we the dying make the choice to smile and be supportive or acknowledge just how selfish we can be.

no we are not selfish and neither are the ones who love us.  another friend wrote about the burden of love, the weight of it.  there are times when i wonder how my love stops himself from walking out the door and never looking back.  i do love him so it comes easy to support his need to be away from time to time.  actually he would, he says, be fine with staying here with me just in case.

tuesday i was experiencing so much pain that i went to the dr.  my dr says this would be a good time to go in the hospital. he felt this was an appropriate action.  he also knows me and said, after seeing the look on my face, we could do all the tests that day and get the results in a day or two. if i were in the hospital he felt things would move faster.  in the end we decided to go outpatient.  wednesday i was feeling a little better so we went out.  sitting across from each other, chris shares he is concerned we are not being prudent to go on a cruise.  after a moment of thought i responded…. i am going to die somewhere so why not on a cruise?  the blank look on his face is not a new one with me.  he says ok. guess i will figure it out if it happens.  my point is i don’t want to sit at home waiting for death to come.

turns out i probably passed a kidney stone and my liver is getting worse.  the good news is we are leaving next sunday for a 7 day cruise.  i will not have to be strong and wise. he will not have to be strong and wise.  we can be two sweethearts sharing an unforgettable experience.  i am feeling wiser already!

 

 

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five regrets of the dying by bronnie ware

November 25, 2012 at 9:52 pm (being remembered, bronnie ware, death with dignity, five regrets of dying, living with dying, the dr. says) (, , , , , , , )

Bronnie Ware is an Australian nurse who spent several years working in palliative care, caring for patients in the last 12 weeks of their lives. She recorded their dying epiphanies in a blog called Inspiration and Chai, which gathered so much attention that she put her observations into a book called The Top Five Regrets of the Dying.

There was no mention of more sex or bungee jumps. A palliative nurse who has counselled the dying in their last days has revealed the most common regrets we have at the end of our lives. And among the top, from men in particular, is ‘I wish I hadn’t worked so hard’.

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.

This was the most common regret of all. When people realise that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even a half of their dreams and had to die knowing that it was due to choices they had made, or not made.

It is very important to try to honour at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realise, until they no longer have it.

2. I wish I didn’t work so hard.

This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.

By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

3. I wish I’d had the courage to express my feelings.

Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.

We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.

4. I wish I had stayed in touch with my friends.

Often they would not truly realise the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying.

It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

5. I wish that I had let myself be happier.

This is a surprisingly common one. Many did not realise until the end that happiness is a choice.  They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again.

When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying.

Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.

What’s your greatest regret so far, and what will you set out to achieve or change before you die?

 

 

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final exit network, william peace i think i get it now

November 20, 2012 at 4:21 am (assisted suicide, death with dignity, frontline- the suicide plan, how does it feel to die, how to die in oregon, the dr. says) (, , , , , , , , )

william peace is a well-known activist and we have had some discussion over our difference of opinions.  after watching dr. oz i wrote about my feelings regarding the right to die with dignity movement.  i received a well thought out and informative message from william.  at the end we both felt it was important for reasonable people to sit down and have, as we had, a reasonable discussion.  what i could not agree with in the end were two main points.  first i will never agree that just because one person believes a certain way they have the right to thrust that belief on me.  for example, some believe it is a sin to take your own life. i have heard it said that only god has the right to decide who lives or dies. my question is what about those of us who do not believe in god? we do not share that certainty and i do not believe those that do believe,have the right to tell me some entity i don’t believe in is going to make this decision for me.

the second was i did not believe as william does about a slippery slope.  my understanding is if we have the right to die with dignity then somehow (i am not sure of the details) people with disabilities are at risk for being euthanized.  until seeing  Frontline-show this seemed a bit murky to me.  the show outlined once again how some states are allowing assisted suicide and others are prosecuting these cases.  the first person followed is an 80-something woman with advanced lung cancer.  she has made the decision to end her life.  the group Compassionate Choices were all set to help her.  she had purchased the medication needed and knew what she was going to take and in what combination.  her husband said he was catholic and would not do this himself but felt she had the right to die the way she wanted to.  this all was in line with my belief in the right to die with dignity.  next was the story of a woman named jana.

jana was a 50 something year old woman.  she believed she was terminally ill. in fact she was not.  she had gallbladder surgery years ago, she thought she had breast cancer, she thought she had high-blood pressure.  there were a couple of other ailments on her list.  this list was submitted to the Final Exit Network.  ostensibly the list was reviewed by a physician who approved her for assistance with her suicide.  someone from the network went over how she would make a hood, connect it to a tank of helium, slip it over her head and turn on the gas.  they would then remove the hood and the tank so people would think she had died of natural causes.  her relatives were suspicious and called the police.  from there it was discovered just how she had died.  here is the thing that shocked me, as i see this list i realize she is not terminally ill, although she had claimed to be in horrendous pain.  some say this pain whether real or not caused her life to be not worth living.  her sister testified that jana was mentally ill and did believe she was dying, she had believed this for many years.  my mind is still trying to make some sense of a dr. approving her for assisted suicide.

of course another way of looking at this is to understand how important regulations are.  if this were legal as it is in oregon and washington this kind of thing would not happen. any dr. that prescribed the fatal cocktail would be under constant scrutiny. only patients who are terminally ill would be eligible.  as long as it is illegal it will remain like back alley abortions.  when abortion is legal it is safe.  whether we agree with that choice or not is not important. a woman has the right to decide what happens to her body. too many women lost their lives and their ability to have children in the future just because one group of people wanted to tell others how to live their life.  as with the right to die, abortions are personal choices that do not infringe on the lives of others.  i understand the argument and yet i do not agree. i am concerned here about jana and how many  like her are being “helped by these groups who claim to aid/assist only those who are terminally ill.  how many jana’s have there been?

the following are taken from the websites for the afore-mentioned groups.

this is from the Final Exit Network:

Our Guiding Principles

We hold that mentally competent adults have a basic human right to end their lives under the following conditions:

  • they suffer from a fatal or irreversible illness or intractable pain,
  • they judge that their quality of life is unacceptable to them,
  • they judge that their future is hopeless.

compassionate choices is another organization developed for the same cause.

Compassion & Choices is the leading nonprofit organization committed to helping everyone have the best death possible. We offer free counseling, planning resources, referrals and guidance, and across the nation we work to protect and expand options at the end of life.

For over thirty years we have reduced people’s suffering and given them some control in their final days – even when injury or illness takes their voice. We are experts in what it takes to die well.

William Peace, i understand your concerns now.  i now ask how many people like jana has this organization assisted to leave this life too early?  any dr. could have easily evaluated her request and understood she was not a candidate for their final exit plan.  mr. peace i hope that you will continue to find the strength to fight for the jana’s of the world.

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friendships and lisa welchel

November 6, 2012 at 1:56 am (end stage congestive heart failure, how does it feel to die, the dr. says) (, , )

lisa welchel was a child star.  as an adult she shares how difficult her personal life has been as a result of this.  she seemed not just sad but determined to spare her own children the same fate.  well before her star days lisa was a shy girl. in her own words she has never been good at “chit-chat.”  this really struck a chord with me.  growing up my grandmother had many wonderful traits, her chit-chat was not one of them.  in the early years of my life i rarely had anything to say and mama would explain that i would talk when i had something to say.  over the years i would hear similar remarks, while working on my graduate degree one of my professors said she respected me as i didn’t just ramble, in her opinion when i spoke it was worth listening to.

even as i read the words i feel the same unease as when it was said the first time.  it certainly sounds like a compliment doesn’t it?  then why do i feel this way? the truth was i never really knew how to do the whole small talk thing. when lisa shared her inability to chit-chat i knew exactly what she meant.  being a therapist was perfect for me, listen to people and they will imagine you are whoever they need you to be.  as a nurse, working air-evac trauma was  perfect in its own way.  a couple of times it was unavoidable that i ended up on a unit in a hospital.  patients would say my presence gave them comfort, although at times i knew they wanted me to say something. this is where i learned to say things that i felt and under the circumstances it didn’t seem too weird.  re-assuring those who were suffering as well as those who would get well and leave.

my ys is great at chit-chat. she can go in any room and fit right in.  she is everything i am not when it comes to social situations.  i do not envy her so much as admire her.  to know that kind of ease with other people appears to be one of those natural abilities.  to be very  honest here and a bit ironic, when working with youth this is something i actually helped them with.  those who can not do… teach?  fortunately they never knew what a fraud i was.

what has always been genuine is my love of others.  i am grateful to have this love.  maybe i am not good at chit-chat, that is fine with me.  i can admire in others what i am not able to do and be satisfied with the gift i do have.  maybe some of us are not meant to have numerous friends, maybe some of us are meant to have this love of our fellow man and have the blessing of family and a small group of friends.

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thoughts and words

November 4, 2012 at 6:56 pm (being remembered, end stage congestive heart failure, feelings and thoughts, heart failure and exhaustion, how does it feel to die, living with dying, pain, road trips, the dr. says) (, , , , )

last night is not the first time this has happened and it is so frustrating.  when all was quiet i knew i wanted to share some thoughts and feelings here. the problem was the thoughts could not find their way to the fingers.  fingers were at the ready, just come on brain, give them the words.  at one time i had a fairly good range of vocabulary, not now.  sometimes words are right there just waiting to jump out yet when i sit in front of the screen?  nada, nothing forms. at times i would swear that the words have a feel and taste to them, they are as real in my mind as they are when typed.  after this disappointment, more often than not, all the words and more come bouncing forward.  thoughts and phrases lost earlier are now rollicking through my ready for sleep mind.

it isn’t surprising with the lack of oxygen to all my vital organs of course my brain is affected. driving vacations are probably not the best anymore.  after only a couple of hours in the car my fluid retention is a hazard.  once we stopped i was too exhausted to take the medication that would have helped.  since i do not want to disappoint h or myself i push to get up and moving long before i have had enough rest.  we did take a nap every day except the days we were driving from point a to point b.  our room was separated from the marina by a small street. it seemed a shame to be so close and not walk over and see the boats.  when planning this vacation we had planned on spending time with ferry rides to the island for some sightseeing and hopefully an encounter with the wild horses.  the hurricane made it impossible for anyone to travel to the islands.  the state ferry was shut down to all except those who lived on the island.

walking a block to the coffee shop took 45 min. to an hour.  with much encouragement h did go out once without me.  his resistance to spending time on his own makes it tough.  i am no longer able to push through and wish we weren’t at this point but here we are.  in a short time we will drive to charleston and already have reservations for our bed and breakfast along the way.  we are both looking forward to thanksgiving with our family.

our next trip is in december, we are going on a cruise.  this should work out well since i can retreat to our room and put my feet up whenever needed.  of course that will be followed by our christmas in charleston.  this was most likely our last extended driving vacation. it had to happen sometime and i certainly have no complaints.  we have had some amazing trips in our years together and have our memories.  when i am experiencing extreme pain we go through those memories together.  it is my hope that although i am at times robbed of words that i will not be robbed of my memories.  if i think about it though, i have to say i probably won’t know that i am without those memories and i have family and friends to help me remember.

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while away

November 4, 2012 at 2:14 am (end stage congestive heart failure, heart failure and exhaustion, hurricane sandy, road trips, shackelford ponies, the dr. says) (, , , , )

though i did not post any updates on my own blog i was able to continue to check in on some of my friends here.  this is truly a miracle, a small one but quite handy.  through facebook, email and smart phones we are able to stay in touch and reach out to those we love.

hurricane sandy devastated so many it is hard to wrap my mind around it. while in the army we practiced  mass casualty situations. under certain circumstances we were fully prepared to take action and do the most good.  as we all know it is one thing to practice and another to be in the thick of it.

we left here on sunday for the “crystal coast” and stayed at a beautiful hotel a few hours away. the next morning we called the inn we were going to stay at and they said come one everything is fine.  when we got there it was extremely windy and i hate to say it but i was grateful.  i was able to rest and just hang out in our room.  the trip was so much more exhausting than i had expected.  the fluid retention was also more than i was expecting.  there never seemed to be a good time to take the pills that would ease the fluid retention.  not to blame, it just seemed everyday that maybe tomorrow i would take care of it.

here are a couple of pictures taken from the balcony of our room.

i am too tired to fix this tonight but for some reason the last paragraph did not post:(  ah there is tomorrow to work this…

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a different kind of night

October 26, 2012 at 3:03 am (dying, holidays, how does it feel to die, leaving, living, living with dying, peace of heart, shackelford ponies, the dr. says, waiting) (, , , , , , , )

tonight is very different from just a few nights ago.  my sister is stretched out on the couch and is leaving tomorrow.  yesterday we went to see Argo with ben affleck and it was gripping.   as we walked up to the counter to pay she turned to us and said “i can pay for myself.”  of course she can, she has a great job, travels, lives in san francisco on her own.  she has a ton of friends and an on-off boyfriend.  i don’t have any reason to worry about her, well …. except she is my baby sister and  lives on her own in san francisco!

 this evening we spent together took me from the moment, to the past and the future.  in that moment i realized she is going to be fine.  a few years ago she came to stay with us, at the time she was going through an awful lot of emotional turmoil.  we were sort of a resting place, a place for her to make some decisions about what she wanted to do without the stress.  since i was 14 when she was born and the mother  really turned her over to me, i have a very protective love for her.  hearing her say she could pay for herself brought me back to the moment and i was so proud of her. 

the down side is it feels like letting go of that baby girl i first held, the girl who called me in germany to tell me about the boys she liked, the time she had a fight with her boyfriend and through her tears came to my lap to sit and cry.  the upside is i can go and know that she will be okay.

knowing that everyone is going to be okay is important.  my sister has said and it is so true, we are good, we have said  everything we need to say.  our calls end with i love you so when i go there is no doubt that we have a good relationship.  my husband will be sad but he is going to be okay.  my step-friends will be sad and they will stand by their dad and help him if they need to.  my friends know that i care about them and that if something needed to be said i would have said it.

so now, more than ever, we are just waiting.  while i am waiting i think i will go to the ocean and see the wild ponies. then we will have a big family thanksgiving, after that a cruise to the islands, and round out the year with the traditional Christmas in charleston!  this very well may be my last one and if it is i am going out with a bang:)  life is good, yeah life is real good!

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