Dear Physicians, Please Won't You Share?

Allow me to somewhat knowingly decipher this article below for you...

In a nutshell, not every physician is a good sharer.  Meaning that, unfortunately, some Moms slacked off and never taught the important "sharing virtue" to their children and some of those children grew up and became doctors.

Current awareness of "end of life care" including hospice, palliative care, supportive care, etc. should FOREMOST be the personal responsibility of EVERY PHYSICIAN to inform EVERY ONE of their patients of and with.  

Patients go to physicians that they trust with their VERY LIVES, thus if there is any information that may even somewhat be beneficial to any patient (regardless of the physicians own personal opinions and experiences) their physician OWES IT TO THEIR PATIENTS LIVES to clearly share these resources!

Countless people, organizations, political groups, advocates, etc. and so on STRUGGLE to come up with additional ways to get End of Life and Palliative Care information to each and every patient, exceedingly high amounts of money and resources are used and spent in order to do so.

Why are all of these efforts to spread End of Life and Palliative Care Awareness necessary to begin with?!!

It makes absolutely no sense whatsoever, relaying this information should not be difficult!  All each physician needs to do is personally and notedly hand one of those fliers/books/dvds/resources that they are constantly gifted with to their patients!  That's it!  

Do we really need to pass a law requiring physicians to "share"?

End-of-life care differs by race: study

January 30, 2009

NEW YORK (Reuters Health) - The way that older adults with advanced cancer live out their last days seems to vary based on race, a US study suggests.

But the reasons for the discrepancies remain unclear, according to the researchers, led by Dr. Alexander K. Smith of Beth Israel Deaconess Medical Center in Boston.

"Improved understanding," they write, "will hopefully lead to interventions that improve end-of-life care for all patients with advanced cancer."

SOURCE: Journal of the American Geriatrics Society, January 2009.

It's all worth it to have had him at all.

Reflecting upon the movie Shadowlands, the words of C.S. Lewis...

In a strange way, I see now how the suffering of all of us who mourn the loss of our PapAmore, Arend 'Odee' Lenderink, is a part of the blessing.

I imagine that not many are "blessed" enough to feel this kind of anguish...not everyone has been able to experience this great amount of love on earth.

The degree to which our hearts currently shatter is a direct result of the enormous amount of love they held for and were given by this sacred man we knew.  

I wouldn't give up all of my pain of today for even one yesterday without him.  

It's all worth it to have had him at all.

We can’t have the happiness of yesterday without the pain of today. That’s the deal.

The Price of Love

We can’t have the happiness of yesterday without the pain of today. That’s the deal.
- Shadowlands 1993

Shadowlands, the 1993 film portraying the love story between the English writer, CS Lewis, and the American poet Joy Davidman Gresham.Within our story, Shadowlands comes at the end of the beginning, and at the beginning of the end. But as one dark day is closing, so a different dawn awaits.

Why love, if losing hurts so much?

I have no answers any more: only the life I have lived.

I'm sorry that I'm feeling sorry for us...

How do I stop fighting for you when you're all I want back?  

How do I "let go" of our lifeline?  

How do I not search for the only one who always had the answers?  

I just want to climb in your lap.

I just want for it all to go away.

This morning your little Anna told me, not long after she had awoken...

"Mama, this is just so ridiculous!  I can't believe my Papa died!  I keep thinking it must be a dream...but, it's not...and sometimes, I don't like it when you wake me up now, Mama...'cause then I know it's real, that my Papa really did die."

I'm sorry, that we miss you so much, Papa...

I'm sorry that I don't actually feel God "carrying us" most all of the time now, like most likely I should...

I'm sorry I "fought" for you perhaps too long...

I'm sorry that I'm feeling sorry for us...

We miss you and you're gone...

It's so hard to believe that you're gone...

Please Pray for this newly diagnosed AML Grandmother and her Family

my so called life: Acute Myeloid Leukemia

If you could please send some positive thoughts or prayers her way, I would be immensely grateful.

Potential Good News for some AML Patients

Don’t let age bar you from having a blood stem cell transplant

by MARIJKE on December 9th, 2008

According to a press release issued by the University of Texas MD Anderson Cancer Center, Older Age Doesn’t Affect Survival after Bone Marrow Transplant, if you’re over 65 years old and you have acute myeloid leukemia (AML) or myelodysplastic syndrome (MDS), you could do just as well as younger patients who receive the transplant.

In a new study, researchers looked at 551 patients who had transplants for MDS and 565 for AML. They found that age had no statistically significant impact on transplant-related mortality, relapse, leukemia-free survival or overall survival.

Time From Diagnosis to Treatment Initiation Predicts Survival in Younger, but Not Older, Acute Myeloid Leukemia Patients

Blood. 2009 Jan 1;113(1):28-36, MA Sekeres , P Elson, ME Kalaycio, AS Advani, EA Copelan, S Faderl, HM Kantarjian, E Estey

An extract out of grape kernels can bring about leukemia cells to kill themselves.

Americans have chosen HOPE over fear

In light of America, our Freedom, Gratitude, Hope and a Cure for Cancer, HERE as of Today is a Bill we best Support.

It's Hard to Live without Hope

It was Tuesday evening, January 6th, 2009

My own little girls were on a scheduled visit with their father for a few hours and I was at my parents along with my sister eating tacos, all four of us together, at their "breakfast" table.

My Dad was feeling good, he was already on his second taco, I was filming him telling some of his favorite memories and his eyes were dancing in response to the joy he had for life, for us, for the memories he was sharing, for the time we were presently having...

The "C-word" was still looming, but the hope we had discovered that day had lifted enough for us to be able to breathe again a bit...it felt so good to have even just a glimmer of hope again...we could smile now, even laugh, really enjoy each other's presence.

Ironically hope actually had been found online, frantic googling for a glimmer of it was ultimately successful!   For just hours earlier I had stumbled upon this term we'd all never heard of before called Palliative Care.  

As it turned out, platelets were NOT THE ONLY thing that could be done for my Dad!  There were other options, clearer directions, definite comfort for his pain, even potential treatments available for the man who supposedly had none.  

Palliative Care had given us some hope back that day, the mere knowledge of it alone provided such an immeasurable gift of healing to our pain laden hopeless hearts.

My Dad died five days later, but those all too brief moments of hope, I will always cherish.  

I carry them in my heart today and even now, just over a week since he moved to Heaven, they are somewhat able to soothe the intense pain of losing him.  

If I could live forever in only one moment, it was that one...the moment we found hope again...it's so hard to live without hope...

Please contact your local elected officials today and urge them to increase Palliative Care Awareness via the most effective manner possible.

If You Don't Respect Life, How Are You Able To Save It?

God created life so that it would be cherished, respected and treated with divine care.

Would you feel comfortable going to a Physician who purposely withheld VITAL resources regarding your LIFE?

If you work in the Medical Field and have a patient lying in bed, shivering from cold temperatures, would you put a blanket over them?

If you saw a small child playing alone in the middle of the street, would you move them to the sidewalk before danger approached?

If you happened across a blind man dying of thirst, would you lead him to the nearby drinking fountain?

Do you send your child out to play in the snow with bare feet?

Do you put your Grandparent ailing from Alzheimer's in charge of keeping track of all of your family's weekly activities?

Stupid Questions...Common Sense

Would a Cancer Doctor at the very least, share a folder of Hospice and Palliative Care Resources (of which, btw...are not the same thing) with her Patient during their "Medically, you've run out of options, basically you'll be dead soon" Meeting?

Stupid Question...Common Sense

Right??!!

Astoundingly, it's not...as I am sadly discovering it is not COMMON SENSE for many Cancer Doctors...how could this be??!!!

The very ones whom others trust with their VERY LIVES...not respecting it??!!!

The reality of this is terrifying for us all, because one thing we ALL will have in common is dying...

PLEASE do your part to increase Awareness of Hospice and Palliative Care.

Do you Respect Life?  And if so, how could you not?

My Dad's Cancer Doctor never shared Palliative Care Resources with him at anytime...the only way we found out about it was through a lucky search on the Internet...so regarding this issue, in a sad, albeit strange way...Google was able to Respect my Father, while his Oncologist was not...

I love my Dad (Arend 'Odee' Lenderink)...and I am not okay with this having happened to him nor to anyone...

For PapAmore, Palliative Care Awareness in Honor of Odee Lenderink

In Honor of PapAmore, Arend 'Odee' Lenderink...we wish to dramatically increase the amount of quality information and valuable resources shared with and available to those potentially facing the final stage of cancer.

Although incomprehensible, some physicians do not share with their patients essential knowledge of greatly aiding end of life material.  Rather they seemingly feel it is their "God given right" to singularly destroy all hope while at the same time offering no "road map" for the horrific journey most likely ahead.

When I reflect upon the dark aimlessness my parent's were dealt by my Dad's one and only Oncologist, I am so overwhelmingly sickened.  To deal another human being a "medically no more options" hand without providing them with the necessary tools to face this nightmare is beyond cruel and inhumane.

I fervently pray that none other will have to endure this agonizing path.  I can't get my Dad back now, but I can (hopefully) work towards helping others in his name.

To simply hand a patient a folder Palliative Care Resources is such an easy yet vital act. 

 

There is NO EXCUSE for ANY Physician to omit doing so...

Please a leave a comment below for our Papa, regarding 

Odee Lenderink's Palliative Care Awareness and please do not hesitate to add any suggestions and/or questions as well...

Please Help Make A Positive Change...For Everyone...For PapAmore...

EVERYONE should be Privy to certain Information, regardless of Internet Access and Skills, Physician Communication Ability, Current Ability to Absorb and/or Hear the Information at that moment, etc.

Is it really okay for ANYONE to tell another human being that due to lack of Medical Options that their life is over and THEN to send them out the door without sharing with them VITAL RESOURCES regarding AVAILABLE?!

Without googling Palliative Care and contacting them on our own, my Dad would not even have had a pain relief prescription, he was dying from AML without even a prescription for relief from the intense pain.

Please Help Make A Positive Change...For PapAmore...

For PapAmore...Are You Familiar With Palliative Care?

For PapAmore...Are You Familiar With Palliative Care?

I want to make a difference for my Dad...

EVERYONE should be Privy to certain Information, regardless of Internet Access and Skills, Physician Communication Ability, Current Ability to Absorb and/or Hear the Information at that moment, etc.

Is it really okay for ANYONE to tell another human being that due to lack of Medical Options that their life is over and THEN to send them out the door without sharing with them VITAL RESOURCES regarding AVAILABLE?!

Without googling Palliative Care and contacting them on our own, my Dad would not even have had a pain relief prescription, he was dying from AML without even a prescription for relief from the intense pain.

I can't change the whole world, but when I have seen my Hero tragically inflicted by the cruel, senseless lack of what should be a required (seemingly, sharing hospice and palliative care resources is currently not mandatory, or so we have been led to believe) distribution of a simple brochure entailing information...that is something easily remedied, imo...

The goal of palliative care is to prevent and relieve suffering and to ensure the best quality of life for patients with serious illness. It is offered simultaneously with all other appropriate medical treatment.

Letter sent out, Please Copy/Paste, Thank-You!

All that my Dad, Arend 'Odee' Lenderink , was told by his Oncologist was that medically he had no more options, he was was then sent on his way with no resources and never informed of Palliative Care, not verbally, not via print materials, no information shared in any form nor matter... http://papamore.blogspot.com/2009/01/for-papamoreare-you-familiar-with.html  

The only way that we found out about Palliative Care was through my extensive (and desperate) googling...thus on the internet I discovered Palliative Care, I immediately called the closest Palliative Care facility (St. Mary's Lacks Cancer Center) and they were wonderful, we literally cried tears of relief and comfort as they even set up a house visit at my parent's home the very next morning. (I discovered Palliative Care online 5 days before my Dad died from AML)

They were also the ones to bravely share that contrary to my Father's oncologist (Dr. Amy C. Vanderwoude) 2nd opinions are a good thing, a thing called clinical trials exist, Palliative Care is available, pain medication can be prescribed, introduced us to Hydrea, informed us that my "no options" Father was the healthiest AML patient that they had ever seen, that Hospice is another option, etc.  

In an attempt to put a positive spin on this, I would like to (if it is already a policy, all the better, I would so appreciate knowing either way please) somehow help however I might be able towards requiring that oncologist's share Palliative Care information and resources in written form...  

Prior to contact with Palliative Care, my Father (my entire Family) was left without ANY options...it was such a dark, scary, horrific time anyway and then to not have any resources or information shared by his oncologist with us...I feel compelled to ensure that others need not go through the additional agony of enforced ignorance as we were instructed to abide by and endured.  

More on my Precious Dad, Odee Lenderink, who died from AML on 1/11/09 http://papamore.blogspot.com

Thank You so much for your time and for all that you do...

Please Help Make A Positive Change...For PapAmore...