October 7, 2015 at 11:17 am (Uncategorized) (congestive heart failure, death with dignity, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, the dr. says, waiting for the end)
a couple of nights ago i was sitting here asking myself just how bad does it have to get before i get off this ride? for a couple of weeks my ability to breathe has gotten worse. that sounds so minor when i read it. try to imagine that you can’t say more than one word without gasping for breath. walking from one room to another is the same as running 10 miles, having a conversation becomes more effort than it is worth. eating is difficult ,even if you have not eaten for over 24 hours, so much so that you gasp in between bites until you give in and just give up. i say this not to complain, rather to explain how a person can reach the end of their hope for a better day tomorrow or even soon.
while i am thinking about this angie and i decide to watch a dr. phil that i had recorded one day. i try to record a wide variety of shows that i can watch either on my own, with chris or with angie. some times it is tough to find something that isn’t a program i enjoy just with either one of them. not this one because he and i always watch this or not this one because angie and i enjoy watching it together. they both love funny and they both love the british mysteries and comedies.
back to dr. phil, this show was about a young man who has stage 4 liver cancer. three years ago he was given 6 mos. to live. the show was about his parents being upset that his wife is emotionally abusive to him. of course there is always so much more to the story. the young man’s name is nick and his her name is star. the parents say that star hits their son, refuses to take him for treatment, has had multiple affairs and on and on. she says they both get physical and he is much larger than her, he is skeletal and weak looking. she is at least two feet shorter than him. most of the time was just accusations flying back and forth. nick even complained that his parents get in the middle. finally the good dr says they (parents and wife) need to just shut-up. very professional:) and my thoughts exactly.
bottom line the wife is told she doesn’t have the right to waste one minute of this man’s time. the parents get a dressing down as well. why isn’t anyone asking how to make his life better phil asks. his parents seem to think if he came home where he was living before he was diagnosed he could live longer. they also seem to think star wants the life insurance.
one thing lost in all the noise, as far as i was concerned, is just how difficult life can be when one partner has a terminal illness. star brought this up, she went in to how she is the only one working (he is a veteran but got ill after discharge), they have two children to care for and it is a nine hour trip one way to go for his treatment which is once per month. she asked if she had a right to some happiness in her life and while i was thinking of course she does, no one else seemed to hear her.
living with someone who has a chronic or terminal illness is not for the faint of heart. one of the reasons i am so grateful to my sister for moving here is so my honey can have a life. he doesn’t want to go anywhere without me due to his concern for my having an emergency while he is not here. however, i try to remind him that he cannot just sit here next to me all the time. he will go to play bridge on thursday afternoons but not to eat with his friends afterward unless i go too. he plays poker once a month but there have been times he has not wanted to go because he was worried about me. we have gotten past these times but i have to say things are much easier now that she is here. of course i worried about her in the beginning. it seemed like she was taking things to seriously. now that she has been here for a few months she goes out every day with a friend or to yoga classes. she still drives me to almost all appts. monday she starts a new job and so her life will go back to more normal.
putting all this in to prospective helps. yes i am getting worse and there are times i wonder when is it ok to say enough is enough? as much as i love my family and want to spend however long i can with them i also know that they would not want me to suffer past a certain point. finding that point seems more difficult at times like these. what i know for sure is i would not want to be in nick’s shoes. i am grateful for the family and friends i have been blessed with for sure. it would be better to be alone going through this than to be with the kind of people he is dealing with. actually i don’t think you have to be terminally ill to know that you want to be treated with love and kindness by those in your life.
September 24, 2015 at 5:02 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, loving your sibling, the dr. says, waiting for the end)
at the end of my day yesterday i sat in our double recliner, feet up and a cozy throw on my legs. i couldn’t help but smile. it was a particularly tough day physically. i had some errands to run, angie and i wanted to spend some time together so off we go.
as of late my physical symptoms have escalated. this comes as no surprise and yet we are somehow, briefly surprised and even confused. walking 15-20 feet can leave me breathless and with chest pain. during the day we accommodated my failing heart the best we could. our last stop i could feel my heart struggling to keep up with my mind. we laughed and made bad jokes that might meet with disapproval from others. this time has been so precious for us both.
me: i am so lucky.
her: why do you say that you’re lucky?
me: just think about it, i am here with you, i have a loving husband and friends. i have lived my life the way i wanted, having adventures others might only dream of.
at this point i talked about even the most mundane pleasures, having a washer and dryer, i hated going to the laundrymat! to have air conditioning during these hot summer days, central heat during the winter are gifts i never take for granted. to have the last job be the job of my dreams. surrounded by family, friends and cats that i adore make me one of the luckiest women alive.
each day when i wake i take a moment to think about the many wonderful days i have had. there may not be so many ahead of me but that matters little to me now. if i shed a tear now it is for my loved ones who will hurt when i leave. until that last breathe and perhaps beyond i will know that i am one lucky woman. i think of that little boy washing up on the beach and i cry for him and his loved ones. his mother and brother also died at that time. to think of their suffering and the young lives not lived to their fullest. too many take this offering called life for granted. they don’t fully appreciate what they have been given. i do not judge them, i just feel so sorry for them. we all deserve to love our life and to feel as though we are lucky to have this life.
September 7, 2015 at 9:49 pm (Uncategorized)
our new house sits out in an area that, although it is only blocks from our other house, had been left to go wild. when we bought the other house the economy was just months from a big down turn in the economy. as a result, the land where this house sits, this property was allowed to go back to nature.
my man is a nature lover. my sister and i love nature. we love the earth and do what we can to honor her. however, my sister and i draw a line when it comes to bugs and spiders that look like they could attack us. we do not believe these critters belong inside or on the door which we feel suggests their intent to enter the house. he uses a glass inverted to pick up intruders only to set them free outside the door. we use magazines (not to be read), newspapers and on rare occasions a shoe.
this is relevant, trust me, to this story. as i said in the last post ang and i were discussing which frog would cross the finish line first. out of the blue she says it’s going to be a spider bite! i said it would be a brown recluse. so that is how it all ends my friends, i get bitten by a brown recluse spider,
September 7, 2015 at 2:56 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, frog jumping, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, lupus, the dr. says, waiting for the end)
Hello Sandra, It looks like Tanya has already scheduled your appointment with Dr. Hanley? The ANA is the preliminary blood test that we use to check for a autoimmune disease such as Lupus. This is the reason that we referred you to Rheumatology. We will be more than happy to go over this in more detail when you come for your appointment with Dr. Hanley if you have any additional questions. THANKS and have a great day!
so now i could have lupus?? it might just be the rheumatoid arthritis. well not likely but i like to think that may be it. angie looked it up and really there is nothing new that i am not already experiencing. that is the good news for me i think.
he has gone to bed and now we have our girl time. we have certain shows we watch that he wouldn’t enjoy. it is our time to just hang and talk smack frankly. we also just have this time when we are together and no words are needed. one of the best things is we have a similar sense of humor. we know that we would never say these things to others as they might not understand that we could laugh at some of the things that make us cry laughing so hard.
angie asked me about my pain and what happens when i am unable to wake enough to get up. she wants to understand, she came to our room more than once trying to stir me. one time she read me an article about washing blue jeans. her ex boyfriend would tell her he didn’t need to wash his jeans. my own man has baffled me with this argument for not washing his jeans as often as i would think necessary. he is otherwise a clean man and dresses very well when leaving the house. i can remember basic facts of this article, i can remember her voice. i love her voice! it is so expressive and usually has this hint of laughter just waiting to break out.
i tell her briefly what it is like to lay there and drift off when there is a part of me that screams at this body to respond. get up….. get moving…. the day is passing and you are not participating.
me- you know what i really think about this new problem? it is much like the frog jumping contest they have in california each year. you know they line these frogs up and one may start jumping straight ahead while the others may go off in other directions or just sit still and make no move. well those frogs are my diseases or disorders. one is congestive heart failure, another is kidney failure and so on with the liver failure, internal bleeding and now we add in lupus. one of them is going to cross the line and kill me. we were laughing and imitating those frogs! then i said – you know i am so relieved to have you here and be able to laugh about this stuff. as we are laughing she says “yeah, us and our demented sense of humor.”
well i would rather have a demented sense of humor than to be crying over this journey. now we just have to decide which frog we are going to bet on. anyone want to place a bet?
as the office worker said in her message, Thanks and have a great day!
September 3, 2015 at 10:11 pm (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, the dr. says, waiting for the end)
we (younger sister and i) are talking about long-term relationships.
me- can you believe we have been married 20 years??? well together for 23
her- it doesn’t seem that long. can you believe i stayed with …. (he who will be unnamed) for so long?
me- i stayed married to the first one for 10 yrs and got divorced right around that 10 year mark. the second one he died just before our 10 mark. it never occurred to me that i would be with anyone for that long. wowow, it really has been over 20 years. i kind of worried if someone was married for too long they would run out of things to say to each other.
she- oh i know, i’ve seen those couples! can you imagine?
me- that would be me, one day just say “that’s it, that’s all i got.” can you imagine saying that to someone?? what would he say if i just looked at him and said “i got nothing for you.”
at this point we are laughing and moving on to other topics as we often do. we all laugh more since she has arrived. the cats adore her, well ling tolerates her but then she barely tolerates me:) she is part of the family and fits well with all concerned. our friends love her and she is making new friends each day. all though we are all here together it works great for her to have the rooms upstairs and we are downstairs. we share the downstairs actually, of course the living room, dining and kitchen.
she comes in to wake me up and much like when she was a baby she can make me smile the moment i know she is there. unlike my sweetie, she is more persistent when she knows i really want to be up and going. this morning she brought the time magazine i bought with the article on donald trump. after a good laugh at his expense, i was ready and able to get in the shower and she was off doing whatever it is she does:)
she has taken me to hair appointments, nails, shopping and of course the ever-present doctor appointments. we have had some conversations about my feelings of no hospital. actually she was completely supportive of me not going in last week. at first she had questions and thought if it would make me better then i should go in. when we got down to it and how going in will not make me better, it will just make the doctors feel better. by the way it is now in my permanent record that i “refused to go to the e.r.” ask me if i care! i find it funny but understand they are trying to cover themselves and avoid a lawsuit. now she is supportive and understands that i will not die in a hospital if it is at all avoidable.
not that she let’s me slide on blood work! actually she is a little nag about those things. at my last appointment with the nephrologist he gave me lots of numbers and most of them i remember what they mean. just before leaving his office i asked for the bottom line, what is my kidney function percentage? he is slow to look up and when he does he clearly says 36%. it takes me a moment before i ask, so i know some organs don’t function at 100% as we age so to put this in perspective what percentage should i be at? again he takes a moment before saying “they should be high 90’s to 100”
even at 36% i am not in need of dialysis yet. they did test and know i have rheumatoid arthritis, so another doctor. for so many months i went without a doctor. we have all experienced that bubble when we first go in and suddenly we can’t get off this ride. i am getting ready to say “i got nothing for ya.” the last few times i have gone in the well was dry. i am tempted to say, i already told you everything so …… unless you have something new? oh wait i did that and they are sending me to a rhuematologist. all i know is i am over this getting caught up with the new doctor.
my computer battery is almost dead so i guess this is all for now. life is good regardless of what percentage my kidneys work at, life is good and maybe in part because my kidneys work at 36%. each day i know that i am blessed to be breathing, laughing and loving.
August 18, 2015 at 4:02 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, the dr. says, waiting for the end)
after being out of the room for a few minutes i am greeted with –
him: your doctor just called.
him: he said your lab work is back. your potassium is high and he wants you to go to the emergency room.
me: ok, well what else did he say?
him: just that you need to go to the emergency room.
me: well that’s not happening.
he is concerned and wants to know why not. i laugh and say all the right things. it is a waste of time and resources. i have an appointment with the nephrologist on friday after all. high levels of potassium are related to kidney failure and heart failure. going to the e.r. won’t change anything, this cannot be fixed. if going to the hospital would put my health back to normal then i would be on the road to the closest e.r.
my sister has been out and comes in with lots of information from a camping/hiking class she has attended. earlier on the phone she told me she had some exciting news. once in the door she asks and i tell her we want to hear her news first. she tells us about some news that she is indeed very excited about and asks about our excitement. i laugh and say it wasn’t really exciting, after hearing what the dr said she asks what we are going to do. i give her a quick run down and she looks to him while asking how he feels about my not going in. if i could love either of them more it would be at this moment. he says he trusts my decision, believing me to be an informed patient (i hate that word) he agrees with my logic.
later she asks me more about going in and all i can say is #1 – there is nothing being an inpatient would change. #2 we are way too busy for this, tomorrow is her birthday and i am not going to spend it in the hospital. wednesday we are getting our hair done, i am seeing way too much gray! thursday is bridge for chris and i enjoy going to dinner afterward with players who meet each thursday after their game. friday he has poker and she is going to a concert with h. saturday he leaves for charleston and i know he won’t go and do any of these things if i am either in the hospital or seem “ill” to him.
there is a saying, and i paraphrase here, it is regarding how we think we have all the time in the world and that is our problem in life. i understand this and feel blessed to know that my time is limited. it makes life all the sweeter. as i see it in some ways we have all the time in this world. no need to rush, enjoy life. stop and smell the roses as they say. for me time has gone all too fast, i will not waste it with visits to the hospital. i will eat cake (birthday), get this hair dyed, have dinner with our friends and best of all? i will spend each moment living, loving and laughing! what could be better than that?
August 11, 2015 at 11:20 pm (Uncategorized) (angina, arthritis, congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, making memories, sisters, stage 4 kidney disease, the dr. says, waiting for the end)
last thursday we celebrated our 20th anniversary. we have actually been together for about 23 years but our culture doesn’t celebrate those years, only the ones that have been “legal.” the thing that surprised me the most is when asked what i wanted to do to celebrate i didn’t want to do anything big. what we did was have dinner with our friend julia. she is that friend who regardless of how often we see each other we know how we feel. the time was spent eating at our favorite local restaurant and catching up on her recent trip. this feisty woman drove herself to virginia and not sure but may have driven all the way to washington d.c. for a family reunion. julia is on oxygen and not the youngest friend i have. she is so kind to me, and i know in my heart i could always call her and talk. i can be honest with her in a way i can only be with a few people. of course that doesn’t include my friends here:)
twenty years ago i married the man of my dreams. tonight as we were watching George Gently on acorn and it was about a baby being kidnapped. it took place in 1968 and quite unexpectedly i hear ” i should have kidnapped you. you would have been 14 but that’s legal in arkansas isn’t it?” after a little laugh i gave this some thought. my life would have so different if he had been my first love. the best thing is he is my last love. when you think about it very few people are still with their first love. as a teenager we may think this or that guy is our dream, as we get older that can change drastically. not to say that it can’t happen, being with your first love would be amazing but it just doesn’t happen for most of us. i can’t regret all that went before, i wouldn’t have the experiences and memories i do now.
over the past 23 years we have created some amazing memories. i don’t think i could have appreciated who he was when i was 14. actually that is the age i moved to california to take care of my baby sister. those were 2 of the best years of my life. as it turned out i had my son at age 17 and had surgery at the age of 22 and would never have more children. then at the old age of 37 i met him. as if that wasn’t enough i gained 2 step-daughters and 1 step-son. i know have grandchildren and even a great-granddaughter. all of these blessings have come to me since meeting and marrying my forever love.
seven years ago i was given 5 years to live. that was and still is the statistic used for people with congestive heart failure. what i am discovering is the congestive heart failure is not always what gets you in the end. due to the poor circulation other organs start to break down. my kidneys are on the edge of stage 4 failure. there is not much to do and that is frustrating at times. today i had an appointment with my new family practice doctor. it is apparent we are going to have a very different relationship than i had with my last doctor. this doctor is very caring and kind much like my last doctor. the difference is i find myself more willing to have some testing done. i am severely anemic again and he wants me to see a gastrointerologist. he seems sure that i have internal bleeding. the truth is i have known this for the last few years. i just refused to have any more testing done before. now i find myself agreeing to go and see a new doctor who will most likely want to do a scope and find this bleed. last year i had the iron infusion and it worked for the last year. before that i had a blood transfusion. the blood transfusion would be too risky so the iron infusion would be an option. for some reason this doctor wants to find the problem and fix it if possible. i am still on the fence. so the rest of the news is my liver has not gotten any worse. my kidneys are getting worse though. he is sending me to a ruematologist, i have had arthritis for several years and it is has gotten much worse in the last few months.
two months ago my sister gave up her life in san francisco and moved to georgia in order to be with us. the move was only a few blocks from where we were living however i have learned no matter how short or long the distance a move is a move! if not for her and a couple of other friends we couldn’t have done this. the moving company was great but if not for angie and our friend rita it wouldn’t have happened.
time is what we too often think we have plenty of and it is the thing that can end without a moments notice. i have few regrets and live my life the best i can. thanks to my family and friends my time (however long or short) is the best it can be. my sister comes in to wake me now and again. seeing her smiling beautiful face gives such joy! other times my love comes to wake me. his sweet face and loving manner still make me smile. my heart still beats a little faster when i anticipate seeing him and then there he is. yes after 23 years my heart still beats faster for him. maybe i will have this test so i can continue to see their loving faces. maybe i will have this test so i continue to see the faces of my step-friends, grandchildren and friends. maybe i will have this test to see just how many years beyond the statistics i can live. there are more up sides than down sides? i have time to decide, i think, i hope.
July 24, 2015 at 2:20 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, living with dying, making memories, sisters, the dr. says, waiting for the end)
it has been much too long since i have been here. i miss having the outlet to share how i am feeling. once you say things out loud (or write them) it is a relief and it makes you feel heard. being heard is something we all want. not being heard can lead to people behaving like ted kazinski (the unibomber).
last friday i felt things were finally going a bit better. to my delight i was able to go out for a few errands with angie. the last ones she went in on her own and i waited in the car. it was still great to just get out and we talked and laughed the whole time. it was freedom to be my old self. to reminisce about the days when she was a baby and the years she was growing up. we dished about men and learning the southern ways. in particular the “drop-in.”
when we arrived home i mentioned that the weeds were taller than the plants in our front flower bed. we decided to grab a few on our way in. it felt good to accomplish something even so small and insignificant. we were laughing when suddenly i felt so weak i fell to the ground. my sister yelled out my name and ran to my side. if she had been too kind i don’t know if i could have done what i did next. she knows me well and followed my lead. i said i just needed a minute and in the meantime we chatted. she asked if i needed help and we had discussed the possible need for what is called a “lift assist.” this way when you call 911 they know someone has fallen but will not need to be transported.
after a few moments i was able to get in to a crawling position. from there i was able to crawl into the house where we have stairs and i simply to one at a time until i was able to sit up. the whole time we are just laughing and though i know she was concerned having her cool and calm reaction is more valuable to me than any medication.
i started this with the intention of writing regarding a documentary titled The Last Chapter. for now i have discovered there are other stories i feel the need to share. stories that are about me and not others. it is too easy for me to slip in to that mode. how easy to discuss statistics and the story of others. it is not always so easy to tell how i see myself deteriorating. i am weak now. going outside of this house is not as easy as it once was. i sleep more hours in a day than i am awake. i treasure the time i am able to sit next to my love and just talk or watch one of our programs we love. now that angie is here i love the days she comes in to the bedroom and sits on the bed beside me and we chat.
this may very well be my last chapter. oh i won’t go in to the tedious details. it has been an amazing party and i may be close to leaving. there are a few more things i wish to do before my final good nights and thank you’s. one of the people in the documentary referred to his life as being lived in chapters. i relate to this strongly. this chapter has been a blessing and i will be grateful to the end for this last chapter. for now i am just enjoying the new house with my sister and husband. i was gifted by fate to have step-daughters whom i care so deeply for and grandchildren who hold a part of my heart and will until the end.
we have become good friends with people that i have come to care for deeply. to know that there are these few who will carry my story on after i am gone gives me great peace. peace of heart is something that i found many years ago and my fondest wish for those who suffer. to truly have peace no matter what is happening around you is a gift beyond words. it holds you deep inside and tells you no matter how things turn out it is ok. you can handle whatever comes your way.
i wish for you my love, my family and my friends that you find this peace of heart. i wish for you joy and light in your life. there will be difficult times yet with this peace you will find comfort within.
i have missed you. missed being able to say what is on my mind. missed sharing those thoughts that come now at the end. this has been a mystery for too long. just think when you have been to a party with so much joy, laughter and all your family and friends have been with you. you are getting ready to leave for the night but you want to stay a bit longer, have one more conversation, shake one more hand, kiss one more cheek. you are drunk with joy, i am drunk with joy and though i hesitate to leave i know i must. it is just waiting for the clock to strike midnight. i will have to leave or turn in to a pumpkin.
July 6, 2015 at 10:31 pm (Uncategorized)
Hi everyone, this is Angie, the younger sister, just wanting to let you know that Sandra is not feeling her best but she is strong, hanging in there with a big smile as she always does. This move has been a big project and exhausting, on top of that her left hand is swollen and is very painful so she cannot type. We’re almost finished, hopefully this week, Sandra will write when she is feeling up to it. In the meantime, if you want to send her messages you can respond to this post and I’ll check them for her. Sandra is thinking of you all, what each of you is going through in life and sends big warm hugs and kisses.
June 14, 2015 at 2:43 am (Uncategorized) (congestive heart failure, end stage congestive heart failure, heart failure and exhaustion, how does it feel to die, kidney failure, living with dying, the dr. says, waiting for the end)
the four elements of wisdom-
I am sorry
I was wrong
I need help
I don’t know
these seem like no brainers, but just in case, here they are:)
Othello- “i have no wife.”
this struck me in fact due to a man i have come to not only admire but also respect, lost his wife a few months ago. he had cared for her throughout her illness. he was with her when she left this journey. one of the things he said to me (no names as this is his story) that will stay with me til i leave this story, “i don’t have a wife.” to be a part of two that seldom is out of each other’s company to suddenly be ……. without that person. stunning to say the least and even more so to live through.
A couple of things from the movie THE FAULT IN OUR STARS
The young girl says ” that is the truth, we die in the middle of a sentence.”
of course not literally but i certainly hope to go in the middle of a sentence rather than just waiting for that last period at the end of the last sentence. have you ever wondered what that last sentence would be? what do you want it to be?
mine will not be “rosebud” that is for sure. i don’t want those i love spending years trying to understand what i was trying to say or what i meant. my greatest hope is that it will be 1) how much i loved 2) how grateful i am for the life i have had 3) how much i love to dance.
where there is hope there is life-Anne Frank. this doesn’t need much explaining. i will hold out hope until the very point where in order to leave my family with hope i will give up this life.
the last good day you don’t know is the last good day. well i certainly hope not! otherwise it would not be the last good day. although i believe or hope that i could know and still have a good day. i don’t think they are mutually exclusive. although to be fair i can’t say for sure. i know that i would hope to spend each moment with those i love laughing about the old days along with some of the new. listen to music, make prank calls, you know the sort of things.
the meaning of life can be found through these words:
love-( is an invitation)
i invite you to love with all your heart, hope with all you have, be generous whenever possible (this includes kindness and love). never lose your wonder at all the amazing bits in this thing we call life. believe in something, start with yourself and go from there. knowledge is power and it can never be taken from you. oh yes there are those who will say what about brain dis-eases? somewhere in the fibers of your being is everything you ever knew throughout your life. courage comes in many forms, you didn’t have to serve in the war or rescue people from a fire to have courage. gratitude is one of the easier ones. each day you wake up, you have the chance to live these words.