Conquering Cancer

Goodbye My Friend

2013-04-14T19:24:00.000-07:00

Oh we never know where life will take us

I know it's just a ride on the wheel

And we never know when death will shake us

And we wonder how it will feel

So goodbye my friend

I know I'll never see you again

But the time together through all the years

Will take away these tears

It's okay now

Goodbye my friend

I've seen a lot things that make me crazy

And I guess I held on to you

We could've run away and left well maybe

But it wasn't time and we both knew

So goodbye my friend

I know I'll never see you again

But the love you gave me through all the years

Will take away these tears

I'm okay now

Goodbye my friend

Life's so fragile and love's so pure

We can't hold on but we try

We watch how quickly it disappears

And we never know why

But I'm okay now

Goodbye my friend

You can go now

Goodbye my friend

Lantern launch, March 22, 2013 at CUE Center for Missing Persons National Conference.

Release of ashes ceremony, April 13, 2013, Springmaid Pier, Myrtle Beach, SC.

Goodbye, Susan.......

L O V E

In Death Comes Everlasting Life: Happy Easter

2013-03-31T06:04:00.001-07:00

Old Friends, New Friends, Friends Forever

2013-03-26T06:18:00.002-07:00

The CUE Center for Missing Persons National Conference was always a highlight for Susan. This year was no exception. Although not there in person, her spirit soared all around each and every one who was there.

If she were there she would have made sure to hug all the old friends she met at previous conferences, dried a few tears, talked about the cases, and put things in motion as only she could do.

Susan would have met many new friends among the new faces this year, those who have heard of her, but didn't have the opportunity to meet her, as well as those she was close to by phone, but hadn't met in person. There weren't any strangers in her life, especially those who may have needed her help.

I know she was smiling as she observed the way people take care of people here, it's like no other experience, and among it all, it's creating closer bonds with those who are hurting, whatever the reason.

Susan and Monica....what can we say! Two powerhouses who come together to forge a friendship and take on whatever comes their way. Two forces of nature seeking the way to stop the hurt for the thousands they encounter.

There's nothing like friends, when all else fails us, whether it be family, or enemies made along the way, the love of a true friendship lasts forever.

It's YOUR Day!

2013-02-28T03:27:00.000-08:00

This picture was found on your computer and was titled "light." It seems appropriate that the light from your heavenly place is shining so bright today, your birthday.

Last year you wore the traditional plastic tiara, wand and robe (pink blanket!) to celebrate being the "princess of the day!" Thanks for setting up that tradition!

Today you're wearing a crown of gold and jewels waving your "pixie dust" all over the place!

It's your special day, the day of your birth that we celebrate, with heartfelt thanks that you touched the thousands of lives impacted by your presence on earth.

Now that you've been gone for exactly 4 months, we all feel the void in our lives left by your passing, but, on the other hand, the world as we know it is a better place because you were in it.

Birthdays are a celebration of life, and we celebrate your life today and reflect on all the happy memories you left for each of us, all our own.

Happy Birthday, our friend. As we pass each date and holiday without you, we miss you more.

D

25 Days: Grateful for Susan in Our Lives

2012-11-22T06:20:00.000-08:00

Thanksgiving Day brings us to day 25 without Susan's earthly presence. Her scent still lingers in her room which brings a certain sense of comfort as I try to sort through her personal belongings and make the hard decisions about what to do with them.

Susan taught us all so many lessons, some from her personal experiences and some from her depth of knowledge and spiritual connections. She made holidays sparkle, it was her favorite time to cook something special, even if just putting it together from whatever we had in the pantry. Like magic, a sumptuous meal appeared!

Gratefulness abounds this year amid the sorrow of not having her sitting at the table or making mashed potatoes. I share my personal gratitude for having her in my life for the season that she was intended to be with me.

I've always loved the meaning behind this poem and it helps me through this difficult time. I hope all who read here were blessed by Susan's presence in your life as well, for whatever reason she came into it.

......Delilah

People always come into your life for a reason, a season, or a lifetime.
When you figure out which it is, you know exactly what to do.

When someone is in your life for a REASON,
It is usually to meet a need you have expressed outwardly or inwardly.
They have come to assist you through a difficulty,
Or to provide you with guidance and support,
To aid you physically, emotionally, or even spiritually.

They may seem like a godsend to you, and they are.
They are there for the reason you need them to be.
Then, without any wrong doing on your part or at an inconvenient time,
This person will say or do something to bring the relationship to an end.

Sometimes they die. Sometimes they just walk away.
Sometimes they act up and force you to take a stand.
What we must realize is that our need has been met, our desire fulfilled; their work is done.
The prayer you sent up has been answered and it is now time to move on.

When people come into your life for a SEASON,
It is because your turn has come to share, grow, or learn.
They may bring you an experience of peace or make you laugh.
They may teach you something you have never done.

They usually give you an unbelievable amount of joy.
Believe it! It is real! But, only for a season.
And like Spring turns to Summer and Summer to Fall,
The season eventually ends.

LIFETIME relationships teach you lifetime lessons;
Those things you must build upon in order to have a solid emotional foundation.
Your job is to accept the lesson, love the person anyway;
And put what you have learned to use in all other relationships and areas in your life.

It is said that love is blind but friendship is clairvoyant.
Thank you for being part of my life,
Whether you were a reason, a season or a lifetime.

Author – Unknown

Susan Murphy Milano: Gone But NEVER Forgotten

2012-11-05T07:51:00.000-08:00

Photos by Monica Caison

FOR IMMEDIATE RELEASE

Susan Murphy Milano, National Advocate, Dies of Cancer

Nationally recognized for her work with victims of abuse

Myrtle Beach, SC………On Sunday morning, October 28, 2012, Susan Murphy Milano, one of the nation’s leading pioneer advocates for victims of intimate partner violence, lost her battle with the ultimate abuser, cancer, in Myrtle Beach, South Carolina. Susan left this earth from the home of her close friend, caretaker, and business partner of several years. She was 52.

Throughout her 20 year career Murphy Milano was well known as an outspoken, fiery activist who took on the role of protector of the abused, often using distinctive methods for insuring safety from their abusers.

Susan Murphy Milano began her one woman crusade in 1989 after the death of her beloved mother at the hands of her police detective father. Growing up in a household which held many secrets, she vowed that the world would look differently at battered women and provide necessary resources which weren’t available to help her mother.

Murphy Milano’s books, “Defending Our Lives”, “Moving Out, Moving On” and Time’s Up, are considered the “bibles” of how to make the move away from abuse and deal with the many confusing situations surrounding violence prevention, stalking, break-up or divorce.

Her latest book, based on the experiences of her life, “Holding My Hand Through Hell,” was released on October 4, 2012.

Susan received many awards and accolades through the years for her work with victims of abuse, and her quest for justice was instrumental in the passage of the Illinois Stalking Law and the Lauternberg Act. She has been prominently featured in newspapers, magazines, radio and television including: The Oprah Winfrey Show, Larry King Radio, ABC’S 20/20, Justice Files, E-True Hollywood, CNN, Sunday Today Show Profile, Women’s Day, Family Circle, US News and World Report to name only a few. She frequently participated in guest media commentary panels on major news programs and appeared in the 2010 A&E Biography of Drew Peterson.

In recent years Susan was involved in several radio shows, co-hosting Crime Wire, a regular guest spot on syndicated The Roth Show, and her own radio show, Time’s Up, which featured unsolved cases to which she was bringing attention, missing persons with Monica Caison of CUE Center for Missing Persons, and true crime author interviews.

Beginning in 2007 she covered the disappearance of Stacy Peterson extensively on her blog, Murphy Milano’s Journal, often making bold statements which later proved to become eerily true. On a visit with Stacy’s Pastor, Neil Schori, she became inspired to develop theEvidentiary Abuse Affidavit which, when properly used, helps successfully prosecute cases where the victim becomes incapacitated, missing or murdered, allowing it to be entered into evidence and being the victim’s testimony against the perpetrator, thus circumventing most hearsay laws.

Susan Murphy Milano’s legacy will continue through the efforts of her many colleagues who will attempt to fill her shoes providing expert training and presentations based on her work and the Evidentiary Abuse Affidavit. Through her affiliation with Sandra L. Brown of The Institute for Relational Harm Reduction, and Pastor Neil Schori, the site Document The Abuse was created to house information about the Evidentiary Abuse Affidavit and future development of Susan’s ideals.

Susan was preceded in death by her mother, Roberta Murphy, and her father, Philip Murphy, of Chicago. She is survived by a brother, a sister and her son, along with hundreds of colleagues and thousands of friends, survivors and followers across the country.

A memorial service to honor her life is being planned at Naperville Christian Church with Pastor Neil Schori officiating in Naperville, Illinois, and the scattering of her ashes in South Carolina at a later date.

In lieu of flowers, Susan requested that donations be made towards establishing a trust to help victims in crisis. Donations can be made through her site http://www.conqueringcancer.me

Susan is Soaring With the Angels

2012-10-28T21:51:00.000-07:00

On Sunday, October 28 when many across the country were praying for Susan to find peace and to let God bring her home, she passed through the doorway of the mansion in heaven that was prepared for her.

Is she gone from us? No way.

Susan's work lives on in each and every victim of violence that she figured out how to save, it goes on through each case she offered her expertise that got the attention it needed to make progress, she lives on through each friend who touched her life and to whom she gave so freely. Although her shoes can never be filled, her work will continue.

All of us have a favorite memory, picture and story about Susan. Please feel free to leave your words here in the comment section.

Memorial announcements will be made for a time in the future.

......Delilah

Holding Her Hand Towards Heaven

2012-10-11T05:05:00.000-07:00

On Monday, October 1, Susan made the decision to suspend her treatment and let nature take its course with the cancer.

I knew that once her decision was made there was no turning back this time, and although angry at first, I accept and honor her decision as I know her friends and followers will as well. Susan tried to write this post herself, but her energy levels are declining and I hope that I can honorably speak for her.

Anyone who has been around cancer knows the toll it takes on the body, mind, and spirit. Susan tried hard, often rallying and giving us all hope that she would stay in the fight, but the abusive cancer attacked her too strongly, and she felt that there was no more hope that she could diffuse the outcome.

She is quickly declining without the daily care of Dr. Akoury and the treatments she was getting and it's obvious now just how well the treatments were working, and how without them she is falling prey to the disease.

Susan has a wonderful team of Hospice caretakers who come in to help her, along with Dr. Akoury and myself, we've welcomed the visits of her closest friends. Through the tears and anguish we all realize that she has made peace within herself and accepted the outcome, but ask ourselves can we find that peace as well?

The only thing missing is Susan's family.

I have to speak to Susan's son and her sister: Although you've made very angry and ugly remarks to her publicly and privately, she always has a deep love for you. The same blood that runs through your body runs through hers and you can never change that fact. There comes a time when forgiveness must take place and for whatever wrongs you feel she has done to you, I assure you they are nothing in comparison to the pain she's experiencing knowing she will never be able to touch you, hug you, or hear your voices again.

I may not be able to change your hearts or your minds, but my wish is that you find a way to soften your bitterness and contact her before it's too late. If you would like to do that, please leave a comment here and I'll make it happen. I know you read the blogs often. Please reach out to her, no mother should have to die thinking her only child hates her.

She leaves you only a legacy of hope. Hope that you will grow into the man she envisioned, strong yet compassionate, not angry and bitter, with the capacity to love as she has loved you. Her new book, Holding My Hand Through Hell was written with you in mind, so that you would know the truth from her perspective, and that you would see what made your mother who she is and why she did the things she did.

I will hold her hand until she enters heaven because God placed that responsibility on me, at great cost to my own family and the families of her friends. This experience is one I never, ever thought I would have to do, not prepared for, nor do I want to, and I only hope I have the courage to carry through.

Susan wants everyone to know how much she appreciates the cards, letters, gifts and donations still very important in the maintaining the quality of medicine, services and supplies that will help defray the costs of both her medical bills already incurred and her end of life expenses, and especially the LOVE that has poured all over the country from each one you.

Her wish is that donations will continue so that those who helped her will be paid what they are owed. She also hopes that everyone will do all they can to make Holding My Hand Through Hell a huge success, so the world will know that although life can be hell, with the hand of God we can all make it a better place for somebody.

We don't know the day or the hour that Susan will be taken from us, but she's comfortably waiting in the arms of angels who I'm sure will hold her hand as she enters heaven.

Delilah

Funding Challenge

2012-09-19T04:16:00.001-07:00

Susan with Dr. Akoury at first chemo treatment

As quoted in a Chicago Tribune article over the weekend, Susan Murphy Milano says she doesn't know if she'll make through the end of the year with her cancer battle. That could very well be true.

Susan has had a total of 4 chemo treatments, has done very well with them, made progress, but has to commit to 9 more chemo treatments, as well as strictly follow a regimen to build up her body in order to prepare it for surgery in several weeks. She has a great team, all working together with her to make this happen and to continue with ongoing treatment.

The challenge to make this happen is funding. Although many have stepped up and generously given from their hearts and pocketbooks, we must, once again, appeal to the public for help.

In order to fulfill the commitment to the treatments we need to raise at least $1000-$1500 per week for the next 9 weeks. Yes, do the math, it's quite a sum!

We know that there are many of you who have donated that can not afford to do any more, we thank you and understand, but, do you know people, perhaps in your circle of friends, who may wish to participate?

The outpouring has been great, and we really hate to keep asking, but don't know what else to do.

We are working diligently to follow up on all of the resources many of you have sent our way. Sometimes it seems like we're buried under mountains of papers to fill out, swimming upstream with so little time to devote to it.

As we once again appeal to you, we'd also like to thank each and every one on the supporter's list on this site, with special thanks to CUE Center for Missing Persons volunteers. What a family you all are! You do so much as it is, on your own time and your own dime, to help families of the missing, it just amazes us that you've taken Susan under your wing and called her your own.

To Denise Brown and Danielle Pierre for stepping up and featuring many colleagues of Susan's on their tribute radio show, we thank you for the donations your show was able to bring in and we hope they will continue.

Also, to all of you who have consistently shared articles about Susan, the EAA, Document the Abuse, and the work that will continue, no matter what, we offer our gratitude. Especially to Document the Abuse colleagues Sandra Brown of The Institute for Relational Harm Reduction, Pastor Neil Schori and all others connected who have given their time and dollars. It can't be done without you all.

And...every day we are thankful to Dr. Dalal Akoury, MD at AwareMed for being the compassionate, knowledgeable and caring physician that she is. She's been so generous with her time and resources and is determined to do all she can to help Susan get the cancer under control.

We are running out of options, as well as time. Susan has a terrific team of doctor, oncologist, surgeon, and caretakers who are all working very hard to keep her going, but, with no health insurance, and no income to help with expenses, there's only so much that can be done.

The Budding Blogger

2012-09-12T05:54:00.000-07:00

Long ago in a far away land a blogger was born!

She honed her skills on a little brown typewriter and it made her smile. Reporting on all the neighborhood news and gossip, she surely couldn't wait to pass on her stories. Who was the latest kid to start a fight at school? What did they do to him...details, please! Crime reporting begins!

As most of you know if you've read Susan's blog over the last few years, she has consistently reported about the Drew Peterson case through her blog, MurphyMilanoJournal, and on any venue possible. After all is said and done, Peterson was found guilty of murdering his third wife, Kathleen Savio. For Susan it's a bittersweet victory. And as a reminder to everyone, Peterson's fourth wife, Stacy Peterson is still missing. Very close to Susan's heart, and inspiration for her latest work, none of us will give up the effort to find her.

Timing the release of her latest book, Holding My Hand Through Hell, knowing she would be making the rounds in the media, it seemed like a win/win situation, but God had a different plan for her. She had to turn down many wonderful media opportunities and defer to treatment for her cancer. Her energy levels prevented her from giving interviews and commentary throughout the trial.

Although disappointed, her thoughts weren't really on the trial until the day the jury deliberated. She was in the middle of a conversation and prayers with Pastor Neil Schori when he received a text that the jury was ready to read the verdict. Together they heard the guilty verdict both of them had been praying for. Divine intervention in real time! Neil's work with Susan creating the Evidentiary Abuse Affidavit has been beautifully thrust into a new light, and with new interest, the work to save victims of abuse continues through Neil, Sandra L. Brown, and everyone involved with Document the Abuse.Com

I know it's been too long between updates, I can tell by the amount of emails and messages we've both been getting. Again, sorry about that.. it's summertime at the beach and that means you will usually have guests who pop into town and want to share their vacation with you. All of that on top of Susan's schedule and trying to do the best job for my clients leaves little in the way of spare time.

Down to business! Susan is doing well, she's responding to the IPT treatments with Dr. Akoury and will continue for several more weeks.

A couple weeks ago we went to Charleston, SC to meet with a surgeon. They would like to "debulk" the cancer tumors and then continue afterwards with more treatments to get any of the cancer cells that may be left.

As most cancer patients, Susan's weight and energy levels are very low. We're continuing to build her body up, along with her immune system, so that the surgery and subsequent treatments will be successful.

In spite of it all, she still gets around and is doing things for herself as much as possible. She has had a couple procedures which have drained her fluids, but to do it too often can be risky, so she's still swollen. It's frustrating for her to walk around looking pregnant! The fluids tend to move around and if she's on her feet or sitting up for too long, it causes her legs and feet to swell. Keeping her comfortable with feet in the air isn't always easy!

Thank you to everyone who has sent donations to help offset Susan's treatment and medications, as well as those of you who are actively fundraising. Your efforts are very much appreciated and help Susan to continue the treatments which are paid entirely out of pocket. It's recommended that she have two per week, and that sum is adding up and depleting her funds quickly.

Cancer is like an abuser, and as Susan has taught us all over the years, we must stay "10 steps ahead of the abuser" and disarm them from doing their damage. With continued prayers, a wonderful medical team, and consistent donations, Susan is running the good race, staying about 9 1/2 steps ahead!

August 31, 2012 at AwareMed

Delilah

You'll NEVER Catch ME on One of Those!

2012-08-21T04:24:00.000-07:00

One of Susan's passions is good food!

Shopping to her is going to Trader Joe's, Whole Foods, or any of the grocery stores in the area that carry something more than the usual fare. Lately her energy level has been such that she hasn't been able to do more than hand me a list of what she might want to eat.

Since the cancer we've cleaned up the pantry and re-stocked with as much of the good stuff as we can. Beans of all kinds, organic vegetables, free range chicken, eggs, and fruits in season, two freezers full! Trying all kinds of new things, like flax seed oil, rice protein, coconut oil, and my favorite spice, tumeric, that are great for the prevention and fighting of cancer.

You see, when a loved one has cancer, they are not the only ones with the disease. The caretaker, family and friends are all involved with the cancer one way or another. From cooking healthier meals, to dispensing medications and finding comfort, it's a "family affair!"

Dr. Akoury gave us a food list and recipes to follow along with Susan's patient package. Some of them were already staples, but others, we had never tried. Another learning experience. By the way, I hate kale!

Susan loves to cook, not just the easy stuff, but meals that could compete with some of the best restaurants. Salmon and fish with sauces that perk up your taste buds, and creamed spinach that you just can't stop eating.

Sunday she was bound and determined she was going to market! To take her mind off of her body, the cancer, and the nausea, she makes up meals in her head. Like putting together a whole menu!

She forgot how much energy is used to wash her hair, take a shower and get dressed! By the time we got to the store, she had just about run out of gas. The only alternative.....the store scooter!

I dropped her off at the door and instructed her to just go inside and sit on it, wait for me, before she tried to drive off. There she was ready to go! Waiting for everyone to move out of the way she hit the handle button to back up, making the thing beep, beep, beep, turned it around and away she went!

Down through the wine aisle she goes!

It was a great trip, how we savor the little things!

Up early Monday morning and off to the hospital we went for another fluid draw and another 20 pounds! Happy to hear they are wanting to draw the fluid every week, it makes a big difference in her energy level and her appetite, as well as keeps the pain down for a few days.

So now that she's learned to drive the scooter, I'm sure there's no holding her back!

Delilah

A Blast From the Past!

2012-08-19T18:23:00.000-07:00

Susan to me..."Why do I have to go through this? Why did God shut me down with cancer right at the moment when all I've worked for seemed to be coming together?"

Me to Susan...."Why do you think God did this?"

Susan to Me..."Why did He hold my hand through all the hell....or is He still holding my hand through this hell? "What is it He wants me to learn, what's the lesson this time?"

Me to Susan...."I don't have the answer to your questions, but I believe that God doesn't allow cancer, we, with our own free will, allow cancer. Think about it, think about the lifestyle choices you made for yourself over the last 20 years."

Working with Susan over the last few years, I saw first hand how the candle burned at both ends. Hell, I even participated in the late nights with coffee and cigarettes, tapping away on our keyboards facing each other over the screens of our laptops, pulling together blog posts, editing books, Susan with the phone plastered to her ear working cases or making new connections, and the fun part, developing new ideas about the next "big thing!" So much came together in a relatively short period of time, but neither one of us has been on a "shut it all down" vacation in years!

I know one thing for sure, if Susan was the one in charge of this fundraising campaign, she would have raised a million dollars by now! She's a master at the art of pitching the deal, a God given talent that allowed her to raise the bar in many courtrooms over the years, to have the media eating out of her hand, and to keep thousands of women alive.

Re-reading an article from the Chicago Sun-Times written in 1993 (Life Saver by Bryan Miller) made me realize that she had been going at this pace for far too long, long before I knew her and was captivated by her energy as anyone who comes in contact with her is as well.

Many things in that article jumped off the page at me, even the title "Life Saver" was what we had chosen for the book cover of the Evidentiary Abuse Affidavit. Many things startled me from the following excerpts:

"Susan Murphy Milano is in a state of high indignation--a condition she experiences with exasperating frequency. Milano is an advocate for battered women. She's not a lawyer or a social worker but sort of a guardian angel: she listens to their stories, tells them what their legal options are, hooks them up with shelters and counseling services, coaches them through media interviews and press conferences. For all of her trouble she receives no pay."

"Later she confesses, "Friday I was on burnout--I can't catch up sometimes. I don't think I got five hours of sleep all last week. . . . I don't know how long I can keep going like this." Milano knows that she courts exhaustion by keeping this schedule. A vegetarian, she worries about "keeping my health and mind straight" but smokes a pack a day. "I don't relax well," she admits. "I'm a real nervous Nellie." But she shows no signs of slowing down."

"I never would have been where I am without the media. I hope they never go away--because without them, these women are going to die. And I tell them that every time."

"A lot of women come to me for help, but they don't want to go through with what it takes," says Milano. "They think I can run in and save the day, but I can't. I won't help them unless they're willing to fight the system.

"Before I will help them, they have to be ready to step forward. They can't be wishy-washy. I put myself on the line, just as they're out there. I'm not forcing them, I'm not telling them what to do, but they do have to be ready; they do have to make a decision.

"Some of them back out. A lot of them do. I tell them to go to programs; they don't want to go. I'll set things up, I'll arrange for them to go to [Domestic Violence Court] to get an order of protection, and they won't show up. I'll arrange to have them picked up so they can get there, and they won't go. They're afraid."

"If there is resentment, [the resenters] are in sad shape," adds Linas, who agrees that Milano's lone-gunslinger style is better suited to working outside the bounds of the conventional agencies. "Where's their focus? If the focus is to provide service to women and children, they have no business resenting her. . . . If they're jealous, there's no vision there."

"It seems that no one thinks about how Susan is supposed to live, either. Being a full-time, unpaid advocate has been hard financially. When we first met, in late February, she said rather wistfully, "I'm all on my own. I get paid by writing speeches, doing fund-raising, consulting, writing articles. It's pretty hand-to-mouth. . . . I keep waiting for someone to come and say, 'We'll hire you.'" But none of the agencies seemed interested."

If you want an in depth look at the work Susan has done, how it got done, and some of the cases she worked on in the past, take the time to read the entire article. (thanks, Donna, for finding it again!)

http://www.chicagoreader.com/chicago/life-saver/Content?oid=882558

So, a little bit of a history lesson from Susan, and to all of you who give so much of yourselves and don't hold back any reserves, you can't say that God gave you cancer, or wonder why He is allowing this to happen to you. He gave you life and the time to enjoy it, and you gave it all away, albeit unselfishly, but one thing you forgot to do.....take care of YOU!

Coming into the battle with cancer is like preparing a victim going to court, you can't be wishy-washy, everything is on the line, although it's fearful running down the path to recovery, the results will be worth it.

OK, Susan, you can knock my head off now.....

Delilah

It's Always Something....!

2012-08-17T04:43:00.000-07:00

Each day with cancer is a new challenge, one day all is well, then suddenly you're thrown back into uncertainty, frustration, and the reality of the disease. It's always something!

Just when you think you've laid out the best plan, another stumbling block blows up all the plans and you have to take yet another new direction, but one of the things that keeps us going is the memory of the "good" day and the hope of more. Short walks on the beach and doing the small things that most of us take for granted within our busy days, are what we look forward to.

Susan had a wonderful weekend, she cooked, she ate, she cleaned her room, we walked on the beach, she touched base with a few people, and she wrote a couple blog posts, all major achievements which she enjoyed!

By Monday, cancer reminded us that's it's still around!

Different type of pain, the abdomen began to take on fluid again, although not as much, and nausea that knocks her to her knees. Luckily, the fluid isn't returning nearly as quickly as expected, and can be drained again if she chooses. We've spent another week trying to figure out how to stay ahead of this, keep her comfortable, and experimenting with foods that will stay down, wondering what's causing this new bout of nausea.

We are also reminded of the frustration of trying to "work the system" to get much needed financial help for Susan's treatments. Surgery was recommended to de-bulk the cancer so that the treatments would be more effective, but until financial information is approved, there will be not even a consultation.

Medicaid was denied on the basis of no proof of a disability. Counting on Social Security Disability Insurance to help, Susan was denied based on the fact that she didn't pay enough into the system to qualify for that benefit and that her disability occurred after 2002. Hmm...go figure.....so confusing.

She may still qualify for a supplemental income program from Social Security, we are awaiting the decision, and we were told that would qualify her for Medicaid as well. We are hopeful for this much needed benefit so that Susan can continue her treatment plan.

Days gone by are now like weeks, time going by so quickly when we need it to slow down and let us catch up. It feels like running a marathon with no training and wondering if you'll make it to the next rest stop to take a drink, catch your breath and get back on the track. Endless time spent filling out forms, looking for new assistance programs, fielding emails and phone calls to the point that everything "normal" is put on the back burner.

This is not the way Susan planned to spend this year...2012....too much to do, too many wonderful projects finally coming together, it is supposed to be the year of her dreams coming true. Instead, together we are fighting through another fog of uncertainty wondering what the outcome will be. Obviously, some things we won't know until the time when God reveals them, but until that time, we take each moment, each day of feeling good, as an unexpected gift until the storm passes.

One of the things Susan taught me over the years of working with her, from blog posts to radio shows, is not to reveal everything you know....leave them wanting more!

Life always leaves us wanting more!....

Gilda said it best:

“I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity.” ......Gilda Radner

Delilah

Sunrise August 12, 2012

2012-08-12T13:18:00.000-07:00

I was so happy in my pain free day yesterday, we never made it to the beach, making sure I had a bit more strength so Delilah and I went this morning at sunrise.

The water rushing in between my toes up past my ankles, amazing feeling. The winds were picking up as it was just about to storm, so we didn't stay very long. Or I should say I couldn't stand for very long.

I had my burst of energy for the day and am pleased I spent it so wisely.

A friend of mine by the name of Denise gave me a very special gift, a 365 day devotional titled "Jesus Calling" Enjoying Peace In His Presence. A beautiful leather bound edition by Sarah Young. I've been reading it each day and doing personal lessons, if you will. This devotional has brought me peace and comfort. I would strongly recommend it.

Among gifts I've received people have prepared music, tapes, mp3 downloads of stories, this is great for the days when your eyes just will not open, but you need something to sooth and relax you. Or you are unable to read a book that day.

You are all so amazing as you keep me high on your prayer list!!

God Bless You,
Susan

Tug of War

2012-08-11T01:53:00.000-07:00

Today, is the first day in weeks, that I have the stamina to write on the blog. Right now the time is 3:51 AM in beautiful Myrtle Beach, SC. I am waiting for Delilah to wake-up in a few hours, have her morning Java then head to the beach for some fresh-air.

I can offer no other explanation of how I've been doing, other then to tell you my body wasn't cooperating with me. Foods taking a detour into parts unknown in the human body, I didn't think existed. The build-up when you have no resistance is devastating. Food that is suppose to nourish and fuel you when you have cancer can become your enemy. Now add in the daily drugs of morphine and fentanyl for the pain and your system is now officially backed-up and inoperable for at least 2 weeks. This is a constant tug of war. One day you feel good enough to make a brief phone call to someone other than a medical professional, read, listen to music or draw. The next day, you are unable to get out of bed without assistance. Sometime between when you actually dozed off to asleep and woke-up invaders came and snatched the brief joy of feeling half-way tolerable.

This past week was spent at all hours of the night with the porcelain Gods. My belly had extended itself with

fluids, making my days difficult to breathe, eat, walk and even get dressed. The fluids traveled to my thighs, legs and feet, making it virtually impossible to place a simple undergarment on without a struggle. Your legs become so filled, literally you cannot lift them because of the weight.

Yesterday I had a procedure called Paracentesis. It is a procedure to take out fluid that has collected in the belly (peritoneal fluid). This fluid buildup is called ascites . Ascites may be caused by infection, inflammation, an injury, or other conditions, such as cirrhosis or cancer. The fluid is taken out using a long, thin needle put through the belly. The fluid is sent to a lab and studied to find the cause of the fluid buildup. Paracentesis also may be done to take the fluid out to relieve belly pressure or pain in people with cancer or cirrhosis.

They removed, for someone of my size, and on the 1st go-around, 23.1 POUNDS of fluid. I felt like a new

person. Once they wheeled me back, nurses monitored me for about hour. I thought getting up and walking out would be a piece of cake. I was even considering dancing atop of the nurses station. Instead, I collapsed back into bed when they tried to get me up. The thought of being admitted for the weekend in the hospital was not an option. Finally, Delilah suggested they wrap up my stomach for support. It worked!!

Since most of the fluid is gone, you can really see how skinny (more like bony) I am. If anyone has recipes minus using meat or pork that build good protein, please consider emailing them to me. Or energy/protein drinks that you've seen have good results. I will highlight any recipes you send and tell you what I thought. Remember, taste is important, but not too spicy. I am open to a wide-variety of recipes from other countries.

God Bless You All,

Susan

So Close, and Yet, So Far Away

2012-08-10T04:28:00.000-07:00

Time keeps on ticking even when we are in the midst of an ongoing crisis. Where the heck does it go? After a while the daily routines take on a life of their own and our time has somehow slipped away!

No, we aren't ignoring you or this blog! There just hasn't been enough time in the day to put thought into writing updates, and we're sorry it's been so long!

Today, Friday, August 10 (where did July go?) Susan will be having the fluid removed from her abdomen. It's a relatively simple procedure and our hope is that it will give her more comfort and mobility, and at the same time remove the cancer cells.

She is continuing with the IPT treatments, last week she had her first treatment with low dose chemo in conjunction with the oncologist. However, because this treatment isn't in the first line of protocol, they have decided not to participate further. Another obstacle to overcome.

The IPT treatments have so far been very beneficial to Susan, but since the biopsy and it's interference with the cancer, it's necessary to have the low dose chemo to fight successfully. Our only option left is to purchase the chemo ourselves. Once again, without insurance, it's all about the money.

One advantage of no insurance is that you can choose your treatment options, if you have to pay for it all out of your own pocket, you might as well choose what you trust and believe in. Susan's choice has always been not to have full blown chemo, although that is still an option on the table, she would rather do all she can without it knowing the side effects are sometimes worse than the disease.

I know you all are wondering how she is doing and I apologize for being remiss on the updates here! Her spirits are excellent. Those of you who know her personally know that once Susan is in a fight, she's in it all the way. That's where she is at the moment, fighting hard through each day, going to treatments, taking the supplements and drugs, and everything she is told to do.

Anyone who has been close to this disease knows the roller coaster ride it takes on a body. Days of pain and vomit are common due to the drugs and the cancer itself. Just when you think you're having a great day you get zapped with a fit of vomiting. We are working hard to provide Susan with more good days than bad days, so far it's working, but the down days wreak havoc on the body and the mind.

She is still doing for herself, gets herself up, cooks for herself, does her own laundry and generally takes care of her personal needs. Of course, there are days when she needs more help than others, but she takes pride in what she can do for herself.

Interestingly, the Drew Peterson trial is taking place. Those of you who have followed Susan's work over the last 5 years know that she has been very close to this case and looked forward to the day when Peterson would finally be held accountable. Simply put, priorities have changed. Disappointed in having to turn down several good media opportunities, Susan realizes that her health and well being is more important than whatever happens to Peterson.

The best thing to come out of that tragedy is the creation of the Evidentiary Abuse Affidavit which was sparked by Stacy Peterson going missing. Still missing almost 5 years, it's a tribute and a testament to her, Kathleen Savio, and to all other victims of abuse who need to safely get out of a relationship. So if you're reading this blog and find yourself in a situation you know in your heart is dangerous, pay tribute to Susan, Stacy and all your loved ones and prepare the EAA before you open your mouth about leaving.

Purchase the book, Time's Up, or go to the Apple Store and purchase the new iEAA App, for a small fee you are possibly saving two lives, you own, and Susan's.

Yes, it's still all about the money! If we don't raise the money to buy the chemo, or to pay down some of the already accrued medical bills, we will have no more options.

Right now time is not our friend. I wish we could turn back the clock, or stop it momentarily to catch up, but we can't. We have to forge ahead and do all that we can at a very fast pace.

Every single dollar donated and prayer said is so greatly appreciated! We are grateful to each and every one who reads here, prays for Susan's recovery, and takes away important information to help yourselves. Also pray for the millions of other who are valiantly fighting the battle with cancer, it shouldn't have to be this way!

Important links:
Document the Abuse.Com
AwareMed.Com
IPTforCancer.Com

Delilah

Pain Management and the Will to Live

2012-07-29T04:30:00.000-07:00

Many have asked for an update on Susan as things have been kind of quiet the past couple weeks concerning her condition. While I've blogged about other things, Susan has been on a roller coaster ride trying to manage the severe pain associated with her cancer. Unless we've been in this place, it's hard for us to understand the nature of pain and how it's effects can cause so many other disorders, including losing the will to live.

Susan's pain level was so severe, even with medication, that she was barely able to think rationally, the only thing that mattered was making the pain stop at any cost. Losing patience with the process of trying to find the right medication and dosage for her, she felt there was nothing that was ever going to help, spiraling into deep depression.

"Pain makes a cancer patient’s life dreadful. It may result in loss of appetite, depression, bad temper and abandonment from social interaction, anger, insomnia (sleeplessness) and a failure to cope. It may destroy relationships and the will to live. "

After many tries, we've found the right medication, the right delivery system and the right dosage that has helped her cope with the pain. She's been lifted out of her funk by the prayers and healing thoughts of each and every one of you.

It's great to see her smile again, have her appetite return, and watch her get herself around doing things for herself again. It adds so much to a cancer patient's esteem to know they are not totally dependent on another for daily care. Susan's attitude has been transformed, though not at the finish line by any means, she at least sees there is hope at the end of the tunnel. No matter what the outcome of her condition, she knows at the least she is giving her all in true "Susan" style.

Susan realizes that there is so much of her life's work coming together all at once, the upcoming release of Holding My Hand Through Hell, the new iEAA Apple App for the Evidentiary Abuse Affidavit, Document the Abuse, the possibility of a fiction book series, the inception of the Intimate Partner Violence Institute, a TV series, and more. So much to live for and to receive the rewards for!

Each day brings new promises that life will get back on track for Susan, each day we are thankful for every small blessing.

"You can not take away one day of your life that God has planned for you!"

.....Dr. Dalal Akoury, AwareMed

Delilah

Let's Plant the Seed and Raise the Bucks!

2012-07-27T18:25:00.000-07:00

Cancer is an expensive disease that pulls every string it can, physically, mentally and financially. Insurance companies only pay for designated treatments, not necessarily the patient's choice, or in the patient's best interest. Not only is there the cost of doctor visits, treatments and prescriptions, but the unplanned for expenses of special foods, special clothing, and incidentals that you wouldn't even think of!

What do we do?

Once again, generous donations have been received and we are so grateful for every single one of them, however, here's where it gets tougher, to continue treatment, Susan will need approximately $100,000. Yes, you are seeing all those zeros correctly! If you have given a donation, it's appreciated and we do not expect you to give more, we know how tough times are and that every dollar, and every prayer, has been given with love.

Alternative suggestions:

Reach out to your connections. Who do you know?
Email lists. Could you send a request and a story to your email list directing recipients to donate? (I'll write it for you!)
Community organizations. Every community has a domestic violence agency that may not know about Susan's work, her books, or the Evidentiary Abuse Affidavit. (Document the Abuse.Com) Can you reach out to the directors to purchase books or have her speak for a fee sometime in the future when she's able? Or better yet, educate them! Remember the iEAA Apple App is now available!
Corporate donations. Do you know someone at a local corporation which has a philanthropy arm?
Philanthropists. Who do you know that donates to charity? Could you reach out, tell Susan's story, and perhaps reach their heart (and purse strings!)
Fundraisers. Do you have the time and expertise to organize a fundraiser in Susan's behalf? You don't need our permission or input, if you can do it, please do.
Media. Do you have connections in the media that would be willing to write a story, national blog, television interview, or radio? Exposure of Susan's work and health crisis is crucial.
If you know Oprah's, Warren Buffet's, Richard Branson's or Bill Gates' contact info (very guarded!) get it to me! LOL

Public figures have a hard time asking for help, let alone funds. It's embarrassing for the world to know that everything you have has been given away to those you felt needed it more than yourself. Living frugally with whatever it takes, someone who has put her life on the line for others doesn't have the resources the public thinks. Just because you are in the public eye, look like a million bucks, have authored books, appeared on Oprah, doesn't mean you are "Ms. Gotrocks!" Susan fits this bill. She gave it all away, and for whatever reason, she didn't keep much for herself, including her own energy.

Suzanne Whang, a well known celebrity and comedic host of several television shows, also conquering cancer with little funds, hit the fundraising trail to help with her medical expenses. The expense of cancer knows no boundaries and will leave a financial hit even to those who think they're well covered.

Truth be known, even with the best insurance, there are still gaps in coverage that come straight out of your pocket. Another patient Susan and I met is losing her home because of her fourth bout with cancer. Expecting her to be distraught, it was amazing to see her smile about it and blow it off as just one more thing she and her family wouldn't need to worry about, a mortgage payment.

Please don't do a lot, but please do a little.

Although our fund raising efforts are now concentrated towards Susan's immediate health crisis, when this crisis passes and she is fully back in the saddle, any excess funds will go towards a foundation that will assist future qualified patients without adequate healthcare to receive treatment.

Delilah

How are Angels Supposed to Act?

2012-07-22T05:28:00.001-07:00

Many people believe that angels are God’s messengers at work in the world today. That’s why we call them angels on earth.

Angels come in many forms, from helpful animals to mysterious strangers; from magnificent archangels to guardian angels, our personal angelic guides and protectors; and from glorious heavenly angels to earth angels, those human beings who selflessly assist others.

Angels can come to us in dreams, on a breeze or in a strain of music. But however and whenever they appear, they bring both comfort and life-affirming hope..... From Guideposts

When we think of the behavior of angels we often think they are passive, comforting and benevolent messengers from God. Some of them are, and we welcome their presence, but sometimes angels can appear to bring us truths in a way that we can better understand them, spoken in the language we understand, in the manner which makes the greatest difference in some one's thoughts and actions.

Susan has been surrounded by all types of angels, from those who are "enablers" and comforters, to those who just say it like it is, no nonsense, no sweet talk, no sorrowful tears, and the message is loud and clear!

These angels tend to be the ones who bring the rewards, the songs with deep meaning, and the awards one never suspects they earned. These angels descend with a swoop, stay a bit, but when they leave the message lingers longer. The message that we, as humans, have the innate ability to heal ourselves if we are willing to do the work with the assistance of God, the spirits, the angels, the Doctors, and the earthly friends who pray incessantly.

God has consistently put Susan exactly where she needs to be at just the right time, Holding Her Hand Through Hell. He is still listening, He is still on the throne, and He is working out the perfect order and perfect timing for all of our lives, not just Susan's.

Heart felt thanks go out to those angels and their visits, I think she got the message!

~The angels bring forth comfort and life-affirming HOPE~

"I Won't Let Go"

It's like a storm

That cuts a path

It breaks your will

It feels like that

You think you're lost

But you're not lost on your own

you're not alone

I will stand by you

I will help you through

When you've done all you can do

If you can't cope

I will dry your eyes

I will fight your fight

I will hold you tight

And I won't let go

It hurts my heart

To see you cry

I know it's dark

This part of life

Oh it finds us all

And we're too small

To stop the rain

Oh but when it rains

I will stand by you

I will help you through

When you've done all you can do

And you can't cope

I will dry your eyes

I will fight your fight

I will hold you tight

And I won't let you fall

Don't be afraid to fall

I'm right here to catch you

I won't let you down

It won't get you down

you're gonna make it

Yeah I know you can make it

Cause I will stand by you

I will help you through

When you've done all you can do

And you can't cope

And I will dry your eyes

I will fight your fight

I will hold you tight

And I won't let go

Oh I'm gonna hold you

And I won't let go

Won't let you go

No I won't

Thank you for this, Monica......

Chinese Fortune Cookies

2012-07-20T06:14:00.000-07:00

Yesterday Susan and I participated in one of the most exhilarating experiences. Janet Hosmer of Life in Balance Spiritual Wellness Center coordinated a healing and prayer session for Susan at Dr. Akoury's office at AwareMed. Dr. Akoury invited Father Anthony of the Coptic Orthodox Church for a blessing.

Never having met a lot of the people who showed up, Susan was quite surprised to think they all showed up for her and have committed to continue.

On the way home she had a taste for Chinese food, very specific order! After ordering and getting it all home to her I knew there was no way she was going to put a dent into it! However, we always, pull the fortunes from the cookies, Susan choosing first, kind of our own weird ceremony.

As you can see in the picture above, this is Susan's fortune!

No matter what we believe or don't believe, there is a force of nature larger that we can imagine working constantly, the ying and yang of life, the battle of good over evil, out of the darkness and into the light.

Colossians 3:12-14 Put on then, as God’s chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience, bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive. And above all these put on love, which binds everything together in perfect harmony.

Delilah

Susan Murphy-Milano: A Force of Nature

2012-07-19T05:15:00.000-07:00

Definition: in physics, one of the four fundamental forces that occur in nature and affect the structure of the universe, including gravitation,electromagnetism, strong force, and weak force

There are certain people who come into the world as a force of nature. I think of how storms roll in with no sense of the "rules" of nature, they just come in under their own volition, somehow knowing exactly where to strike. We don't understand why they choose one place over another, but nature dictates where they go and what they do.

Susan, and her work with abuse victims, is similar to the perfect storm, knowing no discrimination of race, religion or economic situation, she comes, she sees and she conquers. For 23 years she uses her talents, intuition and experience to look at an abusive relationship, lay out the road map, and send each one on her way to safety.

Since her health crisis, Susan has heard from so many of the women who are still alive today because of her courage to go against a system that refuses to help in an individualized way. Her words ring true, "No case of intimate partner violence is the same, they are as different as our DNA!" "You can't put an X in the box and send them on their way thinking they will be safe."

Susan has a way of instantly empowering victims of violence, as well as families of the missing, or unsolved homicides. I've seen her look at documents and within a short period of time, she somehow knows the landscape of the case, sets up the road map, and executes the plan with action as swift as a tornado sweeping down the plains of Oklahoma.

Just as with nature and the tides of the ocean, there is an ebb and a flow, sometimes the tides are high and filled with energy, other times low and calm. I see this happening in the behavior of cancer as well, the highs and lows of the disease corresponding to the forces of nature in God's control, not ours.

This all stuck out to me as Susan and I listened to the broadcast of D-Talks Radio with Denise Brown and Danielle Pierre. (If you haven't listened yet, you can always listen to the podcast: CLICK HERE) It was said so succinctly by several people, that Susan is a "force of nature" and a power to be reckoned with.

Right now Susan is in the ebb tide, the low tide of the disease where there is calm water and wide beaches. Each and every prayer and action in her behalf is being heard within a still mind and resting body, God hears them all, no matter where they come from, and He alone decides the timing of His answers.

Delilah

The Week from Hell

2012-07-15T17:04:00.000-07:00

July 13, 2012

The past seven weeks have been a living nightmare. The cancer has spread like a dam busted open in my body. I had a biopsy procedure two weeks ago which has changed the playing field. Now, because of the procedure which I was not in favor of, my stomach and organs have literally blown out as if I were with child. The amount of fluid is also wreaking havoc on me. Actually, carrying and having a baby was easier than what my body is doing to me now.

I am very weak and have little energy. I can't even make a simple call to friends. The swelling in my stomach and sides limits my breathing so I have to conserve my energy. I am unable to sit up as my belly is just too large. Doctors at this stage are unable to drain the belly, the fluid could return at a dangerous level if they do. We are trying to do everything we can to avoid it.

July 13, 2012

Most of the time I am nauseous or in so much pain food is not appealing so my weight continues to spiral downward.

I've become very dependent on others. Delilah, who drives me to all my doctor's appointments, runs errands and rubs my head at 2 am in the morning, is what keeps me moving. Her sister sees to my meals, special juices and anything else I might require.

Dr. Akoury keeps me on track seven days a week, even when I don't want to be, lately throwing tantrums like a child. The pain is getting to me and I want results, yesterday.

Patience is not one of my virtues, as you know.

July 15, 2012

Everyone's prayers, cards, emails really do help, I read and will one day answer them. So I ask in the weeks ahead that you continue with prayers, I need them more now than ever before.

Susan

A Day of Prayer

2012-07-14T07:55:00.000-07:00

Today we are asking for anyone and everyone to pray for Susan's healing. No matter what your religious preference, whomever your God may be, or even if you aren't a believer, positive thoughts create a positive vibration containing many healing elements. Pray for God to show Dr. Akoury the path she needs to follow, the correct procedures, medicines and diagnoses. Pray that He puts all the right people at her side to assist her.

Dr. Akoury is guided by the hand of God. She's very receptive to the gifts of wisdom he bestows upon her and uses those gifts. I've seen her hands, the hands of the healer, doing remarkable things for Susan. She's the one that instantly soothes her as soon as they are in the same room. It's always a miracle to see Susan completely transform before my eyes.

Pray for healing for Susan. Pray that she can feel the touch of God's healing breath upon her and the touch of all the angel wings surrounding her. Let her open up to all the wondrous possibilities that God has for her future, in His perfect order, and His perfect timing.

Ever since Susan's biopsy 2 weeks ago she has been in pain, sometimes less, sometimes more. What's causing this? As it was explained to me, whenever you do a core biopsy it wakes up the cancer, making it much more active. Our bodies start producing fluids to protect itself, and when no longer needed, it reabsorbs. Susan was making great progress until the biopsy was done, and now we must become more aggressive. We've received several miracles to make that happen, including drug assistance and treatment costs, and we are all in agreement with the doctors that she will respond well and the cancer will back down.

This is what Susan is experiencing right now. She's angry, and usually we would look at that as a good thing, and in some ways it is, however, she needs to be in a calm and peaceful state to lull the cancer back down. It's something that goes against her nature, not to fight, but she needs to back away and let the enemy wonder what's coming at it next!

There's a plan in place, guided divinely, and we hope you will be a part of it! On the right side of this blog there is a link to a candle lighting site that a good friend set up for Susan. Please keep the candles burning, let them burn so brightly that it illuminates the way for healing to begin.

By the way, we've been seeing turtles everywhere! Even in Dr. Akoury's parking lot. All with their heads out....could be the sign we need.

Delilah

Do oncologists have an incentive to prescribe expensive treatments?

2012-07-13T05:34:00.001-07:00

Interesting piece citing a Harvard study about the incentives. Doctors are not super humans, and their patients often don't have the knowledge, but put their faith and trust that the right decisions will be made. So, are the expensive therapies always best? Or shouldn't we have the option of looking at everything available in order to make an informed decision between doctor and patient? Shouldn't integrative medicine be one of those options covered by insurance?

As the cost of treatments escalates to numbers that will numb you, even those who have the best insurance, or the money to pay for treatment are being financially brought to their knees in this country. We don't know all the fine points of Obamacare or socialized or universal medicine, but what we do know is that our American system is broken and no one will agree on how to fix it. In the meantime, good people everywhere are dying because they can't afford even the most cost effective treatment for illness, and often the cost of wellness.

Thank you, Andrew of My Lymphoma Journey, for bringing this article to our attention. I hope our readers will also read your thoughts.

Do oncologists have an incentive to prescribe expensive treatments?

A recent economic analysis concluded that patients with metastatic cancer value their treatments significantly more than regulators recognize, with many expensive new therapies looking like veritable bargains to most patients. Yet the study ignored the values really driving oncology spending—the warped incentives oncologists have to promote their own bottom line by prescribing expensive treatments.

Let’s start with the economic analysis, another in a series of studies by a USC team of health economists funded by a large drug company. The USC team began its work with what seems like a reasonable assumption: “The amount someone is willing to pay for a good is the best measure of its social value.”

This assumption is the basis for much economic thinking, and in most market contexts, it is a reasonable take on the situation. When I refuse to buy a pair of bike shorts at $90, for example, but purchase them when the price drops to $70, my decision making says something about the value I place on those shorts. Based on this assumption, the USC team looked at what patients were willing to pay out of pocket for cancer treatments, and calculated what value they placed on these treatments. They concluded that most cancer therapies, by this measure, are a bargain.

But when trying to determine the value of expensive medications, this assumption—that “the amount someone is willing to pay for a good is the best measure of its social value”–is hard to swallow.

For starters, the price of most medical treatments is not transparent to patients. More importantly, patients’ decisions are often not made by patients themselves, but instead are made by their doctors. Patients don’t know enough about all their treatment options to be the savviest of consumers. In my book Critical Decisions coming out this fall (HarperOne, September 2012), I write about the challenge of getting patients to share in their healthcare choices. I’ll write more about this book in upcoming posts. But briefly, the challenge of shared decision making is made steep by the emotions that often surround healthcare decisions. A patient who has just learned that he has metastatic cancer is probably not going to be emotionally prepared to do comparison shopping!

Scared patients turn to their doctors for advice.

And that is where oncologic decision making gets really messy. Because in the United States, at least, many oncologists make a good deal of their income selling drugs to their patients. Here is how it works.

Oncologists purchase intravenous chemotherapy from pharmacies. Patients then receive these drugs in the oncologists’ offices, with outpatient chemotherapy being an increasingly common setting for cancer care. The oncologists then bill patients’ insurance companies for the treatments, including billing the payer for the cost of the chemotherapy PLUS a percentage based mark-up.

Medicare, for example, receives bills from oncologists that charge 106% of the cost of the chemotherapy. Many private insurers pay even larger mark-ups, especially from oncology practices that dominate their local markets and thus have pricing leverage.

This “buy and bill” practice creates an incentive for oncologists to prescribe expensive treatments. After all, a $6 mark-up on a $100 treatment doesn’t do much for the bottom line. But that $600 mark-up on a $10,000 treatment? Give that treatment to enough patients and we’ll soon be talking about real money.

Many oncologists vehemently deny being influenced by this financial conflict of interest. But such denials defy both logic and data. Oncologists would have to be superhuman not to be influenced, at least unconsciously, by such strong incentives. After all, there is often no single “best” way to treat any given tumor, and there’s often good reason to believe that expensive new therapies might be better than older, cheaper treatments. In the face of such uncertainty, how could oncologists avoid being influenced by the knowledge that those promising expensive new treatments also help generate so much income?

Indeed, a team of Harvard researchers examined lung cancer treatments both before and after changes in Medicare reimbursement procedures, changes that led to the 6 percent rule I discussed above. (Believe it or not, prior to 2003, oncologists made even more than 6 percent profit on most of the treatments they prescribed.) Based on the 2003 law, some chemotherapies became far less profitable for oncologists to prescribe. For instance, reimbursement for paclitaxel dropped tenfold, from a little over $2,000 to $225 per month whereas a close cousin of this drug, docataxel, remained much more expensive at around $2,500 per month.

The Harvard team discovered that the percent of lung cancer patients receiving outpatient treatment grew dramatically after 2003. In other words, patients were less likely to receive such treatments in the hospital, and more likely to receive them in the oncologist’s office where the oncologist could buy and bill. In effect, since oncologists were making less profit on each treatment they gave, they tried to make up for this loss in revenue by increasing their volume.

The Harvard team discovered a second thing too—that oncologists were more likely to prescribe docataxel than they were before the reimbursement changes, at the expense (literally) of cheaper drugs like paclitaxel. They shifted to the more expensive and more profitable drug.

The USC team I described above did not cite this Harvard analysis. Perhaps they were so enamored of the idea that patients know what chemotherapy they want (because, you know, patients are so well versed on the relative pros and cons of docataxel and paclitaxel), that they overlooked the likelihood that chemotherapy decisions are primarily made by oncologists.

If we want to get better value out of medical care, we should pay for value. Giving physicians an incentive to prescribe expensive drugs is bad medicine.

Peter Ubel is a physician and behavioral scientist who blogs at his self-titled site, Peter Ubel and can be reached on Twitter @PeterUbel. He is the author of Free Market Madness: Why Human Nature Is at Odds with Economics–and Why it Matters, You’re Stronger Than You Think: Tapping Into the Secrets of Emotionally Resilient People, and Pricing Life: Why It’s Time for Health Care Ra tioning.

D-Talks Radio Pays it Forward for Susan Murphy-Milano

2012-07-12T03:07:00.000-07:00

Tune in to D-Talks Radio, Monday, July 16 at 9pm ET, 6pm PT

To Listen to the Show: CLICK HERE

Thursday, July 12, Denise Brown and Danielle Pierre, the “D,s” in D-Talks Radio, have graciously offered to donate their weekly show, D-Talks Radio, for the benefit of colleague, Susan Murphy-Milano. Diagnosed with stage IV cancer in early June, Murphy-Milano has no health insurance benefits and has taken her crisis to the public through her writing on Conquering Cancer. Me requesting donations, as well as updating on her daily progress through blog posts and a picture gallery. Through her work with battered women, she has put her life on the line for the last 23 years assisting and saving those in lethaly dangerous relationships. In all those years, not one woman lost her life.

Many friends from around the nation are invited to participate in the show, to call in and offer their thoughts about Susan, talk about the work she’s done, and assist in procuring donations for her daily treatment.

Although fund raising efforts are now concentrated towards Susan’s immediate health crisis, when this crisis passes and she is fully back in the saddle, any excess funds will go towards a foundation that will assist future qualified patients without adequate healthcare to receive treatment.

Each day the future looks brighter for Susan, her newest book, Holding My Hand Through Hell will be released in October, 2012. Murphy-Milano is the co-host of Tuesday night radio show, Crime Wire, with Dennis Griffin, Wednesday nights, The Roth Show, with Dr. Laurie Roth, and Thursdays her own show, Time’s Up broadcast through Here Women Talk originating from Myrtle Beach, SC. She is in final talks with two South Carolina universities setting up anIntimate Partner Violence Institute, and has taped a pilot for an upcoming television show. For those who know and love Susan, cancer is a bump in the road.

Denise Brown is a nationally recognized advocate for education and awareness about intimate partner violence, thrust into the limelight after the murder of her sister, Nicole Brown Simpson. Denise lobbied for the Violence Against Women Act and has helped to pass various pieces of legislation. http://www.denisebrown.com/

Danielle Pierre is a published motivational author, life coach and speaker. She assists her clients in reaching the levels of life they are seeking. Learning to re-adapt due to tragic circumstances in her life, Danielle discovered a healthier and more positive path to her life’s journey. http://www.dpmotivation.com/

Together, Brown and Pierre are a dynamic force who have created a platform for the discussion of a number of topics and issues facing people, including their expertise in intimate partner violence, bullying and abuse to wellness topics that create a healthy balance to the problems we face.

Please refer to the following sites:

Denise Brown and Danielle Pierre, D-Talks Radio.Com

Susan Murphy-Milano.Com

ConqueringCancer.Me

Special appearance by Dr. Dalal Akoury

Delilah Jones (not pictured) - President of Imagine Publicity
Anne Bremner - Seattle Attorney, and one of the Nation's most recognized Legal Analysts
Burl Barer - True Crime Author and Radio Host
Denny Griffin - True Crime Author and Radio Host
Diane Dimond - Newsweek Investigative Reporter, Journalist and Author, Media Analyst
Diane Fanning - True Crime Author and Crime Novelist, Author of Mommy's Little Girl
Donna Pendergast - First Assistant Attorney General-Criminal Division, Michigan
Dr. Laurie Roth - Syndicated Radio Host, Author and Presidential Candidate
Gayle Crabtree - Founder of Hope For Healing, Org., Advocate and Trainer for Intimate Partner Violence in the Church
Robin Sax - Fox 11 Los Angeles Legal Analyst
Jillian Maas Backman - Intuitive Life Coach, Author of Beyond the Pews
Neil Schori - Pastor of Naperville Christian Church and Advocate for Victims of Abuse
Pamela Chapman - Advocate and Transitional Healer from Abusive Relationships
Holly Hughes - Attorney and Legal Commentator for HLN and CNN
Sandra Brown - CEO of The Institute for Relational Harm Reduction and Public
Pathology Education, Author of Women Who Love Psychopaths and How to Spot a Dangerous Man
Vito Colucci, Jr - Private Investigator, former Undercover Police Officer, Media Analyst, Radio Host