Caregiver: Pancreatic Cancer
I am a Caregiver
My Emilee, my wife, was diagnosed May 2015 with stage 4 pancreatic cancer with mets to both lungs and right adrenal gland. She was a strong, stubborn, independent woman who withstood more bodily insults than I would ever be able to. She passed away January 31, 2017 (age 61). My blogs tell our story, and what I have been going through after her death.
I was thinking of gathering people's stories, and putting them together in a way that might be helpful to others who are diagnosed with pancreatic cancer. Poignant, gut wrenching, or funny stories (not very common with this disease), whatever you would like to share. Patient, caregiver, family, or friend, it does not matter.
If you think you would like to share and be a part of this, or you would just like to talk me, a caregiver who has lost a loved one and is now working at finding meaning in the time I have left to live my life, please correspond. Thank you, and I sincerely hope you and your loved one(s) are doing well.......Neal
My Emilee, my wife, was diagnosed May 2015 with stage 4 pancreatic cancer with mets to both lungs and right adrenal gland. She was a strong, stubborn, independent woman who withstood more bodily insults than I would ever be able to. She passed away January 31, 2017 (age 61).... [Read More]
Stage of Treatment
Receiving hospice or palliative care
IHC Blog Posts (3)
Poem - Grieving SoulsNovember 7th, 2017
For those grieving for lost loved ones anywhere, but right now, especially for Sutherland Springs, Texas, Manhattan, New York, Las Vegas, Nevada, and countless others here, and everywhere...for you and the anguish you are feeling and for all of us who feel the enormity of your loss...our hearts reach out to yours...
Bless the souls of those who grieve
Grant them solace in their time of need
Give them strength as they fall to their knees
And comfort them as their cut hearts bleed
Share with them your light upon their aching souls
So they can find hope as each day unfolds
And let them not choose bitter over sweet
Help them lift their burden of anger and defeat
Assist them to change their pain into love
And surround them with angels and your healing gift from above
May God's love surround you at this giving season
Giving you Hope as your gift in struggling to make sense for what seems to have no reason
Simple But Profound, Seven Attitudes For Mindfulness (Jon Kabat-Zinn)October 20th, 2017
Seven Attitudes For Mindfulness (Full Catastrophe Living by Jon Kabat-Zinn)
I think this is very important, and key to effective mindfulness based meditation practice. It may sound simple. Maybe it is simple. But realize that simple does not mean easy. Most life lessons, after all is said and done, are simple. But, I am not sure that any are easy. Usually, far from it. And, most, are life long lessons that are on-going, and get repeated over and over, in other words, they have to be practiced. How many of us like to practice anything?
The basic meditation is simple. You keep returning to focusing on your breathing as your mind tries to attach to thoughts, the four hundred things you have to do today, what you did not do from yesterday or the day before, the event coming up in two days or tomorrow or next month, the holidays, your friends, family, and on and on and on and on. Keep returning to your breathing and don't judge how you are doing or how distracted you are just keep coming back to your breath. Simple. Right? Sounds simple. Is simple. NOT EASY.
Most of this information was provided by my instructor as part of the initial once a week for six weeks course that was held at The Graduate Institute in Bethany, Connecticut. I have added some comments of my own here and there.
Use this as a reference guide, even if you do not get a copy of the book. But, it may pique your interest into wanting to read the book, or at least learn the meditation from an instructor. There is something about meditating with a group, even after you have been doing it for some time, that feels powerful.
Maybe it is like group prayer. Strength in numbers, or something like that. But, I am finding it beneficial. Maybe it is comforting knowing that others are also seeking to...what? Find more peace in their lives? To manage their stress more effectively? To manage their emotions and their internal or external criticisms? To be more accepting and less judgemental? To just be more authentic as a person in this world? To just come together for individual and maybe common good?
For whatever reason, there is something that takes your journey out of isolation and makes you feel like a part of something. For me anyway. I am, or at least I have been till now, a loner most of my life. I could stay home the one night a week but I get something out of going, so I go even when I don't feel like it.
In standard notation, the reference would be at the bottom of the page, but I am listing it both here and at the bottom.
Kabat-Zinn, J. (2004 edition), Full Catastrophe Living: How to cope with stress, pain and illness using mindfulness meditation, London: Piatkus
Seven Attitudes for Mindfulness (Full Catastrophe Living by Jon Kabat-Zinn)
Our minds are conditioned to put internal experience and feelings into categories. Good/Bad, Right/Wrong, Like/Dislike, etc.. "These judgments of mind tend to dominate our minds and make it hard for us ever to find any peace" (p. 33). By becoming an impartial witness to our experience we become aware of our habitual judgments and reactions. Knowing what we do can allows space for a new response. The practice is to simply notice the mind is judging and bring attention back to present moment awareness (or object of attention, like the breath).
"Being with" whatever arises requires patience, gentleness and kindness.
We are often rushing from one thing to the next; impatiently awaiting a future event or ruminating the past. "To be patient is simply to be completely in each moment, accepting it in its fullness" (p. 35). Bringing the mind back again to the breath, or body sensations is the true magic of meditation. It builds a wisdom muscle that gives time and space to our lives and allows for a more quality experience. It also allows life to unfold naturally without forcing an outcome.
"Too often we let our thinking and our beliefs about what we 'know' prevent us from seeing things as they really are" (p. 35). Having "fresh eyes" means we see things openly and without expectations. We can remove the veil of past experience and thoughts to have a direct understanding of reality...allowing all of life and people (those we know and don't know) to surprise us with what is truly there instead of allowing our assumptions about a person or situation to deceive us. We can be scientists at every moment, experimenting with reality and our assumptions about it.
Learning to trust one's own experience, feelings and intuition -- loosening oneself from the tyranny of authority and inner harsh judgment allows for deep self-awareness and acceptance.
"Almost everything we do, we do for a purpose, to get something or somewhere. But in meditation, this attitude can be a real obstacle" (p. 37). We are taught to be doers. There should always be a goal and a "driven-ness" to get there. While this may bring temporary relief and security, it can also result in stress and dissatisfaction. Nothing is ever done (totally completed) or good enough. With the attitude of "non-striving" we don't need to force a result. We can learn to see and accept things as they are right now from moment to moment.
"You have to accept yourself as you are, before you can really change" (p. 38). This attitude is about seeing one's experience with clarity and kindness, letting go of denial, suppression, rejection or resignation. We can learn to accept the present moment as if we had invited it.
Realize that in these several brief previous sentences (and each of these subheadings for that matter) I have mentioned concepts that often take years to fully work through in therapy. So, it is called a meditation "practice" for a reason. You don't just get it all in one big AHAH moment. You become more aware over time. But, as you come to accept yourself as you are at the moment, you welcome the process of being open to changing.
To me, in some ways, this is one of the paradoxes. You give up being impatient with "getting there", and say, okay, I will accept myself where I am right this moment. That release of all the pressure to do better and be better and get "there" already, somehow allows you to embrace a metamorphosis for changing what you have always done and always been frustrated with. I said I thought it to be paradoxical, and to me, it is. You give up trying, and this helps to move you to more understanding and ability to change. By saying, I am okay where I am right now, it is like it opens up space for you to grow into something more. I find this fascinating.
"Cultivating the attitude of letting go, or non-attachment, is fundamental to the practice of mindfulness" (p. 39). The tendency to want to hold on to what is pleasant in our experience and to reject what is unpleasant is a conditioned human response sometime known as being on autopilot. We practice just letting our experience be what it is and observe it carefully. When we find we can't just "let go", we can gently examine how it feels to "hold on". This brings us more deeply into relationship with ourselves and opens space for new responses.
Kabat-Zinn, J. (2004 edition), Full Catastrophe Living: How to cope with stress, pain and illness using mindfulness meditation, London: Piatkus
The book goes more into depth on all of these attitudes.
The scientific evidence accumulated on the benefits of mindfulness meditation I have not listed here for references. Suffice it to say, that if you do a little research, you will find an abundance of documented health benefits. Why don't we all do it then? I don't know. Why don't we all work out at the gym or get some kind of cardio exercise every day? Yes, but it is good for us. So? Since when does that get us motivated to do something???
My instructor had us meditate two minutes a day to start. Sort of hard to wiggle out of that huge, overwhelming task, right? The following week, it was three minutes. I am currently at five to ten minutes. I am finding that I want more, so that is a good thing.
I hope that in my sharing here, maybe I have caught your curiosity enough to have you investigate if you have not already. I think it can honestly be life-changing. And I don't mean that in some overly dramatic, sudden, WHAM, your life is different. I mean that it starts to have a subtle but significant effect in how you live day to day. In the moment to moment living. And, that, to me, IS life-changing.
And, as a person with cancer (pain, anxiety, depression), or a survivor, or a caretaker, or someone who has lost a loved one, there is a lot on your plate. This tool can help manage it a little better. That is priceless, is it not???
Life After Emilee, on the loss of my wife to pancreatic cancer. I’m not accepting comments right now but please feel free to get in touch via my Contact page (email@example.com)
2 More Songs Someone Shared with ME plus one I foundSeptember 28th, 2017
https://www.youtube.com/watch?v=7pl0HWxNWvg Don Conoscenti The Other Side
https://www.youtube.com/watch?v=YNoLJy68ZcE&list=RDYNoLJy68ZcE#t=0 Dani and Lizzy Dancing In The Sky ....pretty song....dedicated to those that have lost loved ones
https://youtu.be/giqXicuZuRw Matt Boyd, Mario Jose, Vincent Cannady Have You Ever ….sweet harmonies....not just sweet.... transcendently sweeeet..... have you ever loved somebody..... a love song.... have you ever loved somebody so much it makes you cry....
Some Musings as I Mostly Talk to MyselfSeptember 28th, 2017
Entries or posts to someone that infrequently checks on this site because for whatever reason the notifications that we have some sort of communication on this site is not coming thru on my emails nor hers. In any event, I put them together as they may have some music you would like to listen to, or if you want some amusement, you can go to my facebook page and listen to some of my songs...
There is also a poem, that may be a song, who knows....for now, it stands as a poem.
i am just seeing your message from sept 7 which was my birthday...btw.... i will listen to the songs....music has been a godsend..... verrrrrrrrrrrrrrrrrry helpful.....i have also started writing my own songs...... look me up on face book.. neal klein....look for the pic of me and my grandson...as there are several neal klein s ..... and again my email is
i wrote a song called beautiful person......for someone on a blog site that said they no longer felt beautiful after chemo and radiation....... so many feeel that way..... the treatments are brutal.... brutal....
September 27th, 2017 - 09:20pm
so...in listening to the songs you sent links for....i came across this...the link above... the harmonies are ....well....let me just say... transcending.... you can see what you think, feel......
also i have a cover of an Adele song to send to you..... have to go get the link.... I learned two Adele songs that I was supposed to sing at the hospital.... story for another time.... but I have become a music volunteer at the cancer hospital where Emilee was treated...
do you love to sing? you mention singing in your post above...... I do... love to sing, that is...... music has been such a wonderful gift of healing in many ways.... helping to cry it all out, to crawl, walk, through the storm of grief.... one of the early ones was Billy Joel's lullabye...... his version, and then I heard the group called "The idea of NORTH" do their version.... ohhhhh.....tissues needed.... and how many times i sang that song before i could sing it without crying...... soooo many
going to send this and then send a couple other links....
September 27th, 2017 - 10:31pm
did I send you the website..it has allllll my writings and poetry pretty much
i know you don't need all these song links but several are real gems..... and on some the harmonies are soooooo sweeet......
https://youtu.be/e6RyUfh86wA boyz II men medley just nice harmony
https://youtu.be/eFIE9GKNdH0 Cover Adele ...... All I Ask…….. by Aaron Encinas , Mia Pfirrman, Matt Boyd ...wow
https://youtu.be/DDWKuo3gXMQ Adele….When We Were Young ....this song is like a drama... such a ballad
https://youtu.be/M4T2WZL3b6k Ariana Grande with Nathan Sykes… Almost is Never Enough ...a love song
https://youtu.be/u8qtmWUmoLE Cover .... Lullabye (Goodnight My Angel) by Billy Joel, perf. By The Idea of North..wow on the harmonies
https://youtu.be/dcnd55tLCv8 Billy Joel…..Lullabye beautiful .... i listened to this before finding the above version
https://youtu.be/FHO6a2H-pqY Billy Joel.... And So It Goes a sad song his piano and singing..you just feel it
https://youtu.be/i-pwTP9rCSk Angel by Sarah Mclachlan perf by The Idea Of North nice but i like her own on this one
https://youtu.be/ozKsQnRHb-c Angel by Sarah Mclachlan
September 27th, 2017 - 10:59pm
listen..... my email is firstname.lastname@example.org (you think I repeat myself???????) if you are comfortable sharing yours, let us ditch this blog site since it is a pain in the butt really...
and while I am at it.... my facebook page (neal klein has quite a few of my songs.... but some are verrrrrry rough...lol.... I wrote "beautiful person" after someone told me how crappy they felt about themselves after chemo and radiation.... it is posted on sept 26 i think.... this post is better than an earlier one ...probably a couple of earlier ones...
facebook is a practice platform..... good for starters....but I found a better one.... there is a place in New Haven (I am in North Haven, CT) where if you volunteer, each hour gets you either a half hour of performance on stage, or recording with their equipment................. so last week, saturday afternoon.....I played about 9 songs...to non audience.... about 5 people were there.... which was fine with me.... it was good practice.... when I was 12 I used to love to perform... now I feel like I am sharing something that was meant to be shared, and to give this joy to others....
I sure do hope you eventually read these posts....lol..... I mean, I don't mind talking to the wind...but it sure is nice to listen to another voice coming back to me other than my own.... i like echoes, but i also like harmonies
If you sing, I would like to hear..... and this is my birthday month...so you have three days left to wish me a happy birthday month........ three days.... I have a feeling you are still dealing with your dad's difficulties.... hope he is okay...
and have a feeling it will be more than three days till I hear back from you.....is what it is
September 27th, 2017 - 11:12pm
so...i figure why not just bombard you....lol
this is my facebook post from yesterday.... you get a free poem with it....the melancholy I speak of comes from the fact that August was Emilee's birthday month, and mine is September..... I used to write her a few words each day of the month.... and got sad when the month was over....but then it was my birthday month....but then...I got sad when my month was over....as it is approaching its end.... but I am practicing new things.... like mindfulness based stress reduction meditation..... I am coming back to it I should say.... I did it many years ago...... I am finding it helpful on several levels... embracing the emotion, feel it, observe it, feel it in my body, embrace it, release it....and it is brain training...it is ongoing....and it is at once both so very simple, and yet has potential to be so very profound.
okay......Day 26....I am doing my best to Not get washed over with the same Melancholy that happens at the end of August and returns with the end of September....I am trying to stay in the present and not the future or the past.... but NOT SO EASY....especially if it is something I am accustomed to doing...old tapes do not erase so easily
someone told me their spouse, was diagnosed a month or so ago with very end stage pancreatic cancer, and after one round of chemo, decided he did not want to spend the little time he had left going through such indignities such as uncontrollable diarrhea, and all the rest, and I believe they are dealing with the end of life stage at the moment.
I know this poem has unrealistically compressed grief, but that is ok, and I realize that a person will tenaciously cling to that person's love until they find the space and the healing and the reluctant desire to honor them by "giving it away" (the love) to others who need love.
I wrote this and don’t know yet if it will fit the tune that was in my head yesterday. Maybe and maybe not…I wrote it with the intention of singing it…but don’t know yet…. It stands alone as a poem, not sure about a song…… tooo many words???? It is a ballad…..and I am coming to like the rhythm of it..
How Do You Know There Is Hope, When You Can't See Around The Bend .... OR... maybe just.... Love To Grief To Love.....I got it....
Love Grief Love
what do you say
when your spouse decides
chemo is, too rough a ride
and only buys too little time
you hope you shared
your last goodbyes
you already said
so many words
you never thought
you'd have to say
now it's time
for meds to dull
the pain you need
you need to lull
you both fear the end
since you don't really know
what that is like
but it's time to go
the time is near
you lie down with
and get so close
you want to be
within his skin
you're holding hands
the fear just fades
and there's this peace
from another place
that someone made
no space no time you breathe
you float in place
and feel peace
wash over his face
amidst the pain
that tears your heart
you sense his joy
as he departs
as he journeys with
and you're now alone
you feel full
full of his peace
and then a cyclone hits
and you feel wrenched
right off your feet
like your gut's
been cut out complete
and as the pain
that is your grief
overtakes your soul
there's no relief
it's your first step
toward the distant light
the journey of
from death to life
the phoenix will
take to flight
inside your soul
you have his love
he feeds to you
now yours to share
with all still here
that's how we honor
and how he now lives
inside our hearts
and how we must give
his love away
to all those
who need love
in any way
but that comes later
for now you will cling
to his love as
your life ring
to help you float
so you don’t drown
as the waves knock you down
you don’t want to, but you will
get up again and again and again
because he would want you to
and that is your strength
when you don’t have
Whole In Your HeartAugust 16th, 2017
This could also be Whole In MY Heart, but whatever, it is a part of my HOT AIR series, lol, my daily posting on my face book page which I also posted on my website (lifeafteremilee.com) for August, because August is Emilee's birthday month, and when she was alive, I would change the erase board in the house every day, even if I just changed the count of the days. This year, my first year without her, I am posting things on her and my face book page. This is one of the posts.
The Whole in Your Heart
I think this is a song… after singing Adele’s “When We Were Young”…and repeatedly crying my eyes out the first few times trying to sing it, I then looked at this poem…and… I think with a few tweaks, this is a song, a ballad, a story, and I like it. And the “HE” can be switched to a “SHE” but I wrote it with a grieving woman in mind, so hence the “HE” here. It also applies to myself.
I will be honest here and say this straight to you
I wrote this with someone in mind that grieves and not specifically for you
I wrote it for them and for me and for anyone else grieving so
I wrote for strangers I never met and that I do not even know
but I realize now that I think it may possibly be a song
that I can sing with all my soul once I find a melody that belongs
I think it is a song, that has spoken through my heart
and will speak to others too who’ve seen someone dear depart
I hope you will indulge me, and I insult you in no way
with words I have not so perfectly here and there, put together for you today…..
I hope it brings a deep breath and sigh I hope not too many tears please don’t scoff
and if you do not like it much, please do not find you need to chop my head right off
and it may or may not
speak unto your aching heart
and please stay open to the feelings
and try not to pick it all apart
and so, without any further ado
and it is my belief…..that the hole in your heart…. you say it will never heal….
and that is most likely true….
but you will find the hole gets a little smaller,
scars over and doesn’t bleed quite as profuse …….
and somehow if you stay open to it,
out of the ashes and the crumbling dust,
comes something you did not foresee and it emerges against this crust
this crust of scar and tissue and tears
you thought would go on and on and not end
because sometimes when you feel that way
you cannot see around the bend
and yes you can carry your pain
and even you may not want to give in to relief
and yes you can’t imagine
never carrying so much grief
and i won’t tell you not to grieve
oh you won’t hear that from me
but at some point you may transform some of that pain
into something you could not see
right now you still feel bitter,
and you hurt for what you lost
you will always carry that pain (some of that will always remain)
and it came at an uncountable cost
but some pain you will transform to love
for he would not want you to suffer so
and I would bet all I had (not much ’tis true) that if he could talk to you
he would say,
“one day you will be able to take that pain, and feel my love instead
and I want you to embrace the world and try to wrap this around your head”
“that I gave you a gift my love ….that was, my love you know,
and now you cannot hold on to that too tight (for that would not be right)
I just want you to start to think what good, if you do not share
don’t hold my love that tightly, there are others waiting there
who need that love which is meant to spread, and shine my light with your love and grace,
it is this way that you honor me and our love, by giving it away”
“you give to the child that is sick
you give it to your friend or family
you give it to a homeless hungry soul
that is how you honor me”
“and in this way as you give my love
you are giving your self a gift
for you may just find as you share my love
you give yourself a lift”
“you are sharing me with the world, and not so selfish be
for as you share love with the world you honor and remember me”
“a lift from pain to joy (joy? how is that, that I could feel say you)
yes joy again my darling one, for that is what is real
when you feel joy my wings do move and I so softly alight
and light here where I am, becomes just a little more, yes,
a little more intensely bright”