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)
Metaphor - Life, Loss, Rebirth, Cancer, MoreJuly 7th, 2017
Life Lessons and My Poor Hibiscus
My HIBISCUS ….. I did everything I could…. and it still died (or, someone said to cut it waaaaay back and it might show regrowth from the base…at this point…I question that, although it sounds verrrry metaphorical which I like)… there is something so sad about this…and then…there is yet another MF’g life lesson…about letting go…damn those life lessons…some of them hurt to the core…
You want to know what the hell I am talking about, right?
Okay…. I took care of it, I brought it in for the winter, I babied it, I gave it nourishment, light, water, feeding, and sprayed it for bugs…and when I brought it back outside, I thought at one point, as it was failing, that if I put it in the ground…… it would at least have ONE MORE SEASON TO LIVE…because next winter it would die.
That thought alone gave me ponder. No, I did not put it in the ground but I did put it in a bigger pot. It still died. But here is what I thought about ONE MORE SEASON TO LIVE.
If she had only one more season to live
and I was aware of that
how much would I enjoy her relish her
marvel at her beauty
gaze and ponder and meditate upon her
inhale her lovely leaves and her blooms of magical wonder
how many moments would I drink her colors and dream her scent
when you know your time is running out
and your clock is almost finished ticking
as opposed to most of us whose road trip entails more than one season
and we don’t know when our final moment will be
and we live moments without death in our consciousness
but what if you know you do not have MORE than one season
or you start to live your life that way
throwing caution and procrastination and all sorts of bullshit nonsense to the wind
makes me think of not getting FLUMBASTED (my creation for today)
that means to get bogged down with distracting stuff
getting disorganized and losing focus
allowing entropy or chaos to take over
which leads to confusion and loss of concentration,
which is what I am doing when I get too disorganized and too messy and I need to clean up my papers, my files, my everything
get it together and stop getting FLUMBASTED (nice ring to that word) and live,
like I have one more season
oh, the poor sad HIBISCUS, my life lesson for the moment
Sometimes, no matter what I do, the GREAT SPIRIT has determined, it is not so much that I didn’t give it my ALL because I did, it is just that it is not meant to be, my ALL just was not enough in this case, and, that in itself is a humbling lesson……..always metaphors
For reasons unknown to this infinitesimal being that is me that is part of this soooo much larger entity
This amorphous floating energy of the universe…
It is just not meant to be…and maybe….
Through the incredible tangle of intricate spider web silk that is woven throughout our world like some maze, some bizarre other wordly matrix that connects us all unknowingly and unseen to our singularly human capacity and capability…..some other connection will occur because of this life lesson that I could never have predicted or foreseen or even imagined….
Something good will come of this life lesson, something good will come of this tear in my shirt,
The rip that is made in the ribbon that is worn when a dear loved one dies…(the rabbi tears it on the day of the funeral, and you wear it for the first 30 days)
To show you have been torn, torn, yesssss, you now wear a tear in your heart, on your sleeve, a ripped article of clothing….you wear it so others can see, so they know you have suffered a loss….you wear it, as if you really need the reminder, that you are torn, shattered, cracked…
And it is okay for them to touch your hand, your arm, your sleeve, your tear, if they want to …
To let you know, they feel your pain, they sense your loss, your sadness, maybe your “beginning to feel the light again” …. and somehow…
Somehow…something good comes of this loss…something you could not have dreamed…something….out of the web of intricate connections in the universe… somehow you connect with something, someone, something AND someone…
And let me not forget the poor Hibiscus in all this stream of consciousness rambling… at one point I cried, for it seemed a metaphor to me, and it made me really really sad, but then, after feeling that sadness, I felt the openness that these things often lead to…
I will interact with someone in some way, shape or form because of this, and I will learn something or connect with someone that I wouldn’t have otherwise…
Emilee has died but so much is opening in my life it is difficult to take it all in… I am the same in some ways, and becoming so very different in other ways…so pain, life lessons, new growth…like someone cut me down to the ground, so I could start to grow again (yes….I tried it with the hibiscus, I trimmed it back, and no….lol…it did not work, not yet, and I must finally discard the barren tree that is cut back and has no leaves, as sad as it is, I cannot look at it any more)…
Okay, okay, I will give it a little more time to see if any growth starts to sprout after I cut it back more…but I can’t wait too long…it hurts to keep seeing it look like that…
I imagine many a cancer patient has felt that way during and after treatment, and even after the medical people have said you are cancer free…guess what?…there is no cancer free after you have had cancer…
I don’t like the word “never” but in this case…in your mind, you are always waiting for it to come back or rear it’s head that is dormant in your body…it is such a horrible feeling it is hard for words to describe what that feels like…
And…only those who have had cancer really understand that and “get it”, difficult for those close to the one with cancer to comprehend what their spouse or loved one feels…
So many who have had or have cancer can’t even share this feeling with their spouse or family…for a multitude of reasons…sometimes the spouse is too terrified to confront the thought of losing their loved one, and/or the one with cancer doesn’t want to scare them anymore or burden them…and on and on…and they feel terribly alone at times…terribly…
Yes thankfully, some can share with their spouse or someone else…sometimes with a friend who also has gone through this…
For, it is traumatic during the cancer, and it is PTSD (post traumatic stress disorder) “after” the cancer, so it is never gone even when they say it is…okay, major subject for another day…major…note taken, tears wiped.
It is time for new life and I will get another hibiscus if I need to, and it will make me smile thinking how much Emilee enjoyed that prolific flowering plant the last season of her life…It was amazing, it just kept flowering, it was as if the plant knew how much pleasure it was bringing to someone who had only one more season to live.
Maybe it too, knew it’s life was only a season of joy.. and yes…that still brings tears….and yes… I can still type my best stuff when I am crying….and no…. I don’t really know how to end this…
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.
AFFIRMATIONS (ECHOES)May 24th, 2017
Echoes are a wondrous thing.
And your voice rushes out into space
And instead of fading,
Dissipating into nothingness,
Dropping off into a vast void,
A bottomless canyon,
An infinite, endless expanding universe,
Your voice comes back to you.
Almost a surprise
Your mouth still open, your lips apart
A look of awe and wonder, a wisp of a smile, eyes wide
Questioning, “is that me?” , “Is that my voice?”
The sound slightly altered but
You hear it.
It reverberates and surrounds you like a hug.
Acknowledge, validate your existence,
Assert you are not in a vacuum,
Prove that you are solid matter,
More than a whispy cloud that vanishes from the heat of the sun.
They touch your skin
A hand on your shoulder, your cheek, your back, on top of YOUR hand.
Echoes are a wondrous thing
When they come back to you
And you don’t feel so alone.
A Drink And A Wish, From The WellMay 19th, 2017
A drink and a wish, from the well……..
DRINK FROM THE WELL
Only when you drink from the well of silence
will you surely you find your voice,
for to truly sing,
one must be able to listen,
especially to oneself
as well as filtering through this noise encumbered world,
and attention or quiet mind is needed to untangle the web of voices within.
Only then may the jumble of voices be deciphered and layered
to blend and ring out in harmonious luster,
shining light onto the self and others
wandering in dimly lit passageways
that beckon illumination.
Then may you sing,
allowing your voice to reverberate
love sweet love,
for, when you sing
in tune with the music inside,
you are in harmony with earth and spirit.
So, pause, breathe,
quench your thirst from the well of silence.
You need only to stop and listen,
and sing your song.
And... My Wish
May those who need strength and hope and light,
may angels sing you a symphony of love to surround and uplift you,
cloak you in a blanket of protection,
catch your tears with gentle hand,
and bring you something to smile about
These Are A Few Of My Favorite ThingsMay 9th, 2017
If you are feeling miserable you may resist this, and I understand. Just humor me for a few minutes, okay?
On the anniversary of Emilee's diagnosis two years ago..May 9, 2015...and those of you reading this that do not know, she died three months ago. Just tuck that in the back of your head somewhere.
Somehow I clicked on some silly thing here for my profile or something or it was on Facebook....and it said...what makes you happy...at least that's what I think I saw....and so...I think it erased what I wrote at one point, and when I recovered my composure, after ranting and raving and jumping up and down swearing........
I rewrote.....of course the original thing I saw....it may have been a hallucination...LOL...a GOOD one....
started this whole thing of what makes me happy..... and lo and behold....I could probably go on forever...who knew???
but forever is a long time....how long I do not know yet.... gotta be long though, don't you think?.....
so I started a "what makes me happy list" and I realize..... I want to start keeping these kind of things in mind.....before it is toooooo late.
I know....you may be saying to yourself....right now I am anything but happy. I know.
How many of us do that "what am I grateful for TODAY"? thing....not many of us.... so many times we are just plain grumped out...lol...takes some effort to go to the "what am I grateful for state of mind" when we are stressed, hurting, sick from chemo or radiation, sick from just getting diagnosed with what you don't want to hear, your world just fell apart...
You are angry, scared, in pain, struggling, dying, you know I could keep going...but you get the point........just do it anyway....even one thing.....one damn thing....you farted and you feel a little better, there is one tiny spot on the left side of my nose that DOESN'T HURT...one thing...you were able to catch your breath between bouts of vomiting.... one thing....something? I am happy my spouse (child, parent, friend, partner, you name them) just wiped the_______ off my _______ because God knows, I couldn't have.
I needed to start.......so I started.......and I am amazed at what brings me joy.....I want to put that first on my list....cultivating joy....it makes me happy. Is that redundant??
Here is what I came up with so far.... the list is endless in a way.... it really could go on forever....that in itself is sweet....sweeter than I would have thought possible.... but then... I am still learning..... always the student.... always... till I breathe my last breath...
So...go ahead.... make your own....if you can't do it now, do it later, do it tomorrow, dictate to someone who can write for you....write it or type it if you can.... share it with someone you love...maybe they will learn how to add to your joy....maybe it will be an ongoing venture. I am not done yet. I will add to it.
And, if I forget all this by tomorrow....would you please remind me?
What makes you happy? What makes you feel joy?
Cultivating joy in me, my family, friends, the earth, the world
Jazz, most kinds, especially smooth, funky, dance and movement inducing
Singing, especially with Al Jarreau, but almost any singing, scatting, improvising
Movement, always learning about how I move, learning how to move better
Planting plants and watching them sing in the sun
Butterflies in the garden
Breathing fresh air
Moving in the fresh air
Moving in and through the water
Jazz traditional to funky
Writing prose and poetry
Writing funny stories
Reading funny stories especially those written by people I know
but any funny story will do
Writing and reading stories of the heart
Learning what makes us tick
People who stand up for themselves and who stand up for others who cannot stand up for themselves
People who strive to make this a kinder, saner, more loving, caring , gentle world who
Want to keep this earth a kind and loving planet and like taking care of our mother
People who believe that a woman (NOT the government) chooses what to do with her body
Presidents who I can trust (you understand?)
Food that is healthy for your body and does not harm the planet
Exercise that is good for my body
Feldenkrais movement lessons
Tibetan overtone chanting, and teaching it to others, especially children
My grandchildren, hugs from them and from people I want to hug me
Loving parents and grandparents and foster parents and anyone that encourages a child
When a parent teaches a child that the world can be a loving place, but we also must be smart and careful
People who are able to help bullies find where they are hurting inside and help them heal
Playing with or walking a friendly dog or puppy (do not want my own anymore, not at the moment anyway)
Eating my favorite cereal and yogurt for breakfast
Singing, singing jazz, singing anything
A good spy novel by Vince Vaughn (rest in peace) or the Gabriel alons books …author?...Daniel Silva
Writing prose and poetry
Puns and tons of puns and plays on words
Rhymes in words
Rhymes in time
a good fire and good conversation
night sky someplace where i can really see the stars
the Perseid meteor showers
a good campfire
the song, and at this moment,"these are a few of my favorite things" is playing in my head (along with Ken Navarro in the background)
Roseanne Rosannadana (I loved Gilda Radner)
the original Saturday night live crew
good hallmark mysteries and good movies (meaningful themes, thought provoking, encourage us to do better, requiring tissues for tears) in general
a beautiful cello piece
music that moves my soul
brings me to tears
adults and children's
beautiful art and pottery that moves me
hand made things
beautiful places I dream of going to
human powered movement (bicycle, skates)
spring when the leaves are just starting to leaf out like a Monet painting
art and literature
Fall before the leaves drop
watching a rabbit hop
watching a baby learning to move and explore
sooooooo much more
feeling the wind
shades of color
shades of gray
tones in general
many shapes and sizes of people and things
instruments and their voices
people with heart
everyday music that surrounds us
the sounds the world makes around me
texture of the bark on the tree
the sounds the birds sing
so much more
these are just a few
of my favorite things
and I wasn't sure I knew what they were
the color of the sunrise and sunset
the shape of the clouds
the shape of the trees
the struggle to live
the simple things
warmth when I am cold
cold when I am too warm
words of encouragement
giving and receiving
a sweet song
a melody that stirs my heart
my grandchildren's smiles
staying in the present
compassion or did I say that already....it bears repeating
there is much more
long luscious hair or no hair at all
my wrinkles and discovering new warts and moles on my body
brown spots on my skin
my saggin' parts that make me laugh (go ahead, you laugh too, use your imagination)
I'll try some of that please
The Oak Tree, AMay 7th, 2017
This was a poem on a card to Emilee (from her mother), in which her mom wished her strength to endure. I thought it might be helpful and hopeful. I think of the roots in this poem, as your love...it is strong, deep rooted, and your love will be here as you survive after cancer, or live with cancer, or when cancer takes your body, or that of a loved one
The Oak Tree…. A Message Of Encouragement
A mighty wind blew night and day
It stole the oak tree’s leaves away,
Then snapped its boughs and pulled its bark
Until the oak was tired and stark,
But still the oak tree held its ground
While other trees fell all around.
The weary wind gave up and spoke,
“How can you still be standing, Oak?”
The oak tree said, “I know that you
Can break each branch of mine in two,
Carry every leaf away,
Shake my limbs, and make me sway.
But I have roots stretched in the earth,
Growing stronger since my birth.
You’ll never touch them, for you see,
They are the deepest part of me.
Until today, I wasn’t sure
Of just how much I could endure,
But now I’ve found, with thanks to you,
I’m stronger than I ever knew.”
I hope this gives someone strength to go on, to live, to love, or to let go...to have comfort in knowing that if a loved one has left their body, that they leave a legacy in you, in the earth, in the hearts they touched. Those not here still stand tall in our hearts, and those that ARE alive are worthy of our awe, our encouragement, our touch and our love.