The Health Insurance Dance

October 31, 2009 by  
Filed under Blog

A few weeks ago I read an article in the LA Times http://www.latimes.com/business/la-fi-transplant7-2009oct07,0,6616912.story about a man, Epham Nehme, suing Blue Cross because the insurance company had denied his request for a liver transplant outside his network (Los Angeles) when advised by his UCLA doctor to leave LA for a center with a shorter waiting list as his health was declining too quickly.

I contacted the LA Times journalist and she gave me the email address for Epham’s attorney, Scott Glovsky.  I sent the attorney an email letting him know that I thought I could help. 

My husband Chris had gone through the same thing.  Chris was diagnosed with a very rare cancer of the vascular system, EHE (epithelioid hemangioendothelioma), in early May 2006.  By the time we found out, Chris’ liver was severally compromised and the only thing that could save him was a liver transplant.  That was the diagnosis of both Cedars Sinai and UCLA Medical Center.

By mid May, Chris’ health was declining so rapidly that his own doctor at Cedars – just like Epham – advised him to go to another center. That’s what we did.  My husband was dying and even though Blue Cross had denied to cover the transplant at Mayo Jacksonville, the highest number of transplants at the time – we left for Florida having to wire $300,000 in cash a week later as a deposit for the transplant. 

Six days before Chris was transplanted Blue Cross approved the out of network operation but I have a suspicion that had something to do with an LA Time article entitled “Death By Geography” which described that people waiting in urban centers for a transplant were most likely to die than the people that were aggressive and picked up and left for other centers.  My husband was transplant from the ICU with his lungs and kidneys shutting down.

Since contacting Epham’s attorney, Scott, I have signed away all of Chris’ records for their case, have given an interview to CBS nightly news (not aired yet) and will be a witness in the case.

The reason I’m so passionate about this is very simple: why is that an insurance company would approve a transplant – so recognizing the patient needs the operation to live – but impose restrictions in the coverage, i.e. the location of the center?  Is it because they are hoping that some of these patients will die waiting and therefore they will never have to pay?  Because it makes no sense that Blue Cross would approve a transplant in LA but not approve it in Jacksonville and/or Indiana, after all the entire country does business in American dollars and all centers are willing to accept whatever an insurance company agreement is with other centers.  Whatever the real reasons we need to know.

Why is it when you are faced with the possibility of losing your life or the life of a loved one, do you also have to fight with the insurance company which in theory is there to take care of your medical needs when they arise?

I remember once when my husband had a MRI of his liver and the head radiologist of Cedars said she needed a PET scan because the MRI wasn’t clear enough and Blue Cross denied it.  After many calls I got on the phone with the center in Arizona where the doctor who had issued the denial worked and was able to talk to the supervisor of that institution.  I told her she had two choices: either she would get on a plane and come to Cedars and tell the head radiologist that she was stupid and didn’t know how to read a scan and proceed to teach her how or she had to have the scan approved.  There was no third option available.  At the end I got her to agree to have her doctor have a peer to peer (that’s when two doctors discuss a case) with my doctor.  The scan was approved but I was exhausted having given Blue Cross energy I couldn’t spare.

Or what about when Chris needed Avastin ( an angiogenesis inhibitor meant to cut blood supply to cancer cells) and Blue Cross denied it?  Why? Because it had not been approved by the kind of cancer Chris had.  Excuse me EHE is a rare cancer. Statistics say 20 new cases a year in the US and 100 in the world.  Everything is off label when you are talking about treating EHE.  Avastin cost $5000 a dose and Chris needed two a week and so I reached out to the drug company, Genentech, and they graciously provided Chris with the Avastin he needed.

Chris’ fight lasted two and a half years and although those years were extremely hard they were also extremely beautiful; we loved to our fullest.

I think it is important for people to realize the health system is fine until you really need it.  Having your insurance company pay for antibiotics is one thing but just wait when you need them for something else, you might find out that it is not so great. 

So I’m doing my part and trying to help and bring change in any way I can because while taking care of Chris I wondered how a more shy person would fair in such a system. Probably not very well. 

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Living In Today

October 29, 2009 by  
Filed under Blog

Elisabeth Kubler-Ross suggested in her book Death, The Final State of Growth, “Learning to re-invent yourself in living when you have lost someone you love is very difficult but only through doing so can you give meaning to that person’s death.” Regardless of the situation, when we experience a loss that touches our soul, the planned map for our future life quickly disappears. There are so many questions that flood your thoughts and spin faster and faster. The two most overwhelming questions for me are “Who am I?” and “What do I want to do with my life?”

Until recently I never realized how much of my identity was based around family. I don’t remember a time when decisions were based solely on me and what I wanted. My days started and ended in conversation with a man who knew me better than I knew myself. We shared our hopes and dreams. We had plans and talked about our future… being grandparents, another vacation in San Francisco, going to Australia.

All of that ended when I became a widow. 

Living in today feels like I am living in another person’s life. I don’t really feel like “me” anymore. Some days are more difficult than others. It is a constant rollercoaster of emotions accepting that my world will never go back to normal. What I knew as normal won’t be again. Living in the past is both comforting and heartbreaking. Living in the future is a fog, and it’s incomprehensible.

I have found peace, knowing that my man would always be, from the wisdom of a woman who was married over 60 years to her childhood sweetheart. When asked how she was doing she replied, “Honey it just doesn’t get any easier, it only becomes more permanent.”

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I Should Have Said

October 28, 2009 by  
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I am declaring war against “should have, would have, and could have”.

Someone just called and in a conversation challenged me by indicating I was not sensitive to African-Americans because I didn’t think the use of the word “colored” in the original lyrics of the song “Ol’ Man River” written almost 100 years ago by Oscar Hammerstein for the wonderful musical Showboat, was a racist lyric.

I pointed out that during that period “colored” was the way polite southerners referred to African Americans. I further pointed out that Showboat had a book by Edna Ferber, taken from her previously written novel, and one of the central themes of the story described the pain that was caused by racial prejudice. I mentioned that Hammerstein was the same man who wrote the lyric in the classic musical South Pacific for the song “You’ve Got To Be Taught” which told how children went through indoctrination to learn “to hate and fear” people of different races. I described the original cast of Showboat which employed more African-American actors than any mainstream musical theater production prior to it’s opening on Broadway. I went on and on. Finally I ran out of steam, said “Goodbye” and hung up the phone.

As soon as I  had finished the conversation,  more and more thoughts popped into my head, I should have said such and such or what if I told him such and such, finally I calmed down enough to realize that these “should have” thoughts were useless. Then I started thinking about how wasted are the thoughts that consider what one should have said or should have done. So now, I’m clear, there is no turning back. There are no second chances to get back what has been done.

I am left with only two options. The first is when I talk to someone, when I interact with someone, when I am with someone, I have to try to remember I can’t turn back the clock.

So I realize I should tell the people I love that I love them. I should take the time to be careful that nothing I do hurts or upsets the people I come in contact with.  I should pay attention when I meet people with needs and help when I can.

The other option is that when I fail to live up to this, I should immediately correct it. I shouldn’t stew over what I should have done or could have done or would have done if I had thought of it then, I should try to find a way to cure the mistake instantly. I should try to go back and find out if there is something I can do for the person in need, if there is something I can do or say to soothe the hurt I have caused unthinkingly, if I can tell someone I love that I love them.

Let’s all look around and see where we have messed up and let’s try to cure it because feeling guilty isn’t a cure for anything.

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Two Very Different Stories

October 28, 2009 by  
Filed under Blog

Here are two very different stories.  In one a fifteen year old in California is gang raped while a crowd of over twenty teenagers watch.

http://www.cnn.com/2009/CRIME/10/28/california.gang.rape.bystander/index.html

The other a five year old boy fills up his red cart with his mom’s brownies and garden vegetables and goes around the neighborhood selling them to raise money for his five year old friend in the hospital. 

 

These are two of today’s news.  What are the reasons that make humans act in such distinct ways, one motivated by anger and objectification and the other by love? 

I’m not a psychologist or a criminalist but the stark contrast of these two stories is quite shocking.  I would like to venture out in saying that in the case of the rape the lack of love, respect and purpose in the rappers and witnesses lives must be huge.  No human, unless they are medically certifiably insane – in which case they march to the beat of their own drum – would perpetrate such crime unless they had seen and/or suffered the same rage and violence before.  No human would do that onto another unless they felt worthless.

In the story of the five year old boy it is evident that his family supports his efforts by giving him the garden vegetables and baking the brownies.  It is also obvious that this young boy knows and feels love from his family and therefore it becomes natural for him to share love with his little friend in need.

I remember being invited to screening years ago at the Sony lot of a number of short films made by incarcerated juveniles.  Each and every short film produced, written and acted by these young men, was about love; their need of it, their lack of it.  These were stories about their mothers and girlfriends.  The tough looking boys when given the chance to talk about anything chose to talk about love.

I’m not trying to over simplify these very important and layered stories but I do feel it is important for us to recognize that love is at the heart of them and with every action we take we help to support one story or the other.

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In Love With Being A Woman

October 26, 2009 by  
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It’s taken me a long time to say but here it goes: I like being a woman.  I actually love being a woman and it is a good thing because I am a woman.

Until my thirties I was always jealous of men.  I thought they were strong and in control.  I guess I didn’t think I was.  I even used to dream of being a man.  To me men were independent and didn’t have to worry about aging.  I’ve never been into shopping or make up or any girlie stuff and actually enjoyed playing the tough chick, like don’t mess with me kind of a motto. So I thought being a man would have been a better fit.

Somehow in my thirties I started to make peace with being a woman and lessen my need to be a tough chick. I still didn’t totally love being a woman , but I started kind of liking it.  I think one of the things that held me back in completely loving being a woman was how much more interested in a relationship we are than men – which puts them in the driver’s seat.  And in my thirties I was lonely and kept thinking if I only had a prince to save me, all would be well.

Recently though, I have found out that I absolutely love being a woman.  I think I have finally come into my own, which means my own sense of worth and power.  I don’t mean power to dominate but power to be who I am.  I have also realized how much posturing a man does when they are insecure.  They can become so macho like and if you think about it, it is actually quite charming.  So a lot of their strength can be sometimes just a way to cover up insecurities.  We girls don’t need to do that.

Anyway, when you know who you are and what you need you have amazing personal power and that is so attractive.  So as a woman you can actually step back and watch the dynamics that play out – the male/female.

I have not been with another man besides my husband for six and a half years but because I have been and have honored myself as a woman, I no longer have the despair I once had for a relationship.  I now know when I start dating again things will be different.  I now feel a commitment and respect to myself I have never had before.

My aim of today is to be as happy as I can and not think too much about the future and just let it be, like only a woman can.

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Are You Kidding Me?

October 26, 2009 by  
Filed under Uncategorized

Certainly not.

“You really have a very pleasant disposition and a wonderful way with children.” … “I never realized how much you pay attention to the needs of older people”. … “So who taught you how to fix seemingly anything that needs fixing?  Did you learn it in school or does it just come natural?”  … “You may not think so, but I think you have some of the prettiest feet I’ve ever seen.”

These are the kinds of comments/remarks/questions that someone is making to someone else every single second of every single day … around the world.  And there are lots of kind things being said about us all the time as well.  It’s unfortunate that many of us don’t hear as many of them as we should.  Yeah, there some creepy stuff that’s out there, as well.  But that’s not what we’re addressing at this juncture.

A good lot of us have been blessed with more than what we take time to consider.  A good part of the world is stepping up the pace of life and more times than not, we simply don’t take the time to stop and smell the proverbial roses.  Sure there are loads of stuff we can do without, but so much we can do better with.  I used to have this wonderful aunt who used to repeat often to me, “Don’t wait until somebody dies to tell them that they had pretty shoes”.  As a child, it never made sense to me.  As an adult “I get it“, loudly and clearly.

Many of us need to appreciate ourselves more and do the same for others.  Really, what does it take to thank someone for being courteous or let someone know that her choice of a certain fragrance is quite a breath of fresh air or how flattering a certain color shirt is? 

Lately, we’re hearing more and more about performing random acts of kindness; well, we should simply do more of them.  They’ll not only make the other person feel better, but ourselves, as well.  Offer from your heart and say what you feel in earnest.  Others can sense your sincerity or lack of it.    It’s so simple, we overlook the opportunities extended to us to give and receive everyday.  It’s so little to give … to get so much in return.  Try it, it works … for I kid you not.

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Roy Foster – Helping One Veteran At A Time

October 25, 2009 by  
Filed under Inspiring People

Once homeless himself Roy Foster’s mission is to help veterans join back society.


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The Emotions Of Touch

October 24, 2009 by  
Filed under Blog

One morning I woke up and didn’t feel alone. Instantly my thoughts raced, maybe if I turn over slowly I’ll see my husband laying beside me. What if this had all been just a dream?

For many years I went to sleep and then woke up wrapped in my husband’s arms. After my husband left for Eternal Life I slept in the living room in his chair. I couldn’t bring myself to return to our bed. To sleep curled up in his chair made me feel safe like I did when he put his arms around me and held me tight. 

On the second month anniversary of his passing, I sat on our bed, something I had not done since he left. I would just look at our bed when I walked past it on my way to the shower, especially at his USGA throw draped across the corner. When the men from the funeral home took him out of the house, the throw was draped over his legs. My daughter walked beside me as I followed them… This wasn’t going to be like the time the ambulance took him to the hospital. This time he would never be coming back home. 

It was then, two months since he left our home that my emotions won the tug-of-war. I had shoved them deep down inside for more than a year. During his my husband’s illness for me to acknowledge my feeling hadn’t been an option. My whole focus and purpose had been to care for him, physically, emotionally and spiritually. I needed to show him I was strong and that he didn’t need to worry about me. We needed to use all of our energy and concentrate in saving his life. We both did everything that was asked of us and more. We were focused to live and without regrets.

Recently a woman shared with me she gave everything of her husbands away that first week after he died. The only thing she kept was his pajamas which she sleeps in every night. I couldn’t tell her that we didn’t own pajamas.

All of my husband’s things are still in the closets. I used to question myself on why. Am I only making it harder on myself? What was the reason I couldn’t let them go? Joan Didion, the author of “The Year of Magical Thinking” wrote that she couldn’t give her husband’s shoes away because she thought he would need them when he returned. I have accepted that it’s OK if I’m not ready to give anything of his away. I don’t have to have a reason.

I have never been a “stuff” person which goes back to my mantra of quality over quantity always. Right now I know I need his stuff with me. I still keep his t-shirts organized by color just like he always did. I know that would make him smile since I always kidded him about doing that.

Now every night with his shirts wrapped around me I feel his touch as I lay down in the middle of our bed. I talk to him just as if he’s laying right there with me. Then I ask him to hold me, hold me tight.

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A New York Times Article

October 24, 2009 by  
Filed under Blog

A friend of mine recently sent me the below article printed in the New York Times a few months ago.  I’m posting this article here because I found the struggle of this young woman brave and touching.  We all have our demons, acknowledging and facing them is the first step to our own freedom.


July 26, 2009
Columbia

In Pursuit of Happiness

By CARONAE HOWELL

I’m the kind of woman who spends entire days thinking of nothing but birds: woodcocks, goldfinches, kingfishers. I look for loons everywhere I go. Sometimes I find herons in Central Park and they are mysteries. There is one thing in this world that I envy: the hollowness of bird bones. In the three milliseconds of liftoff, a bird separates itself from its problems. The sky is the freest part of the world.

I have always been depressed, and I have always wanted to fly — not to emulate Superman or to travel faster. I want to fly because of the elation. In my dreams I am a butterfly or a fairy or a honeybee. Depression, for me, is when you want to be a bird, but can’t.

There is a specific moment in which I became a woman. It was February — always the worst month with its aching light and its slip-induced bruises. I had been trying to fall asleep for at least four hours. At 3 a.m., I found myself sobbing and shaking and confused, sitting on my metal dorm bed in the bird-with-a-­broken-wing position. I dug my fingernails into my forearms, leaving shell-shaped trenches behind. I have the kind of skin that refuses to heal, just stays eternally raw and mottled.

It was five weeks into my fourth semester. In late January, a freshman hanged himself in my old dorm. I found myself asking, really, how hard is it to suddenly find yourself perched on a sink, rope around your beautiful neck, ready to fly? How hard?

My dad drove through four states to pick me up the next week. On the way home I had tea and ice cream. He asked me if I remembered the time he took too many of his antidepressants. I did not. Nor did I remember my uncle’s suicide (gun to the cerebrum) or my sister’s delicately sliced arms and hips. These were things I had only been told.

The space between my skull and my irises hurts sometimes — hurts like the shatter of a tiny bird that has fallen midflight. And so it was that sour February night that I took the delicate step into the adult world: realizing that I was too depressed to stay at college was realizing I had not only lost my flock; I had fallen from the air entirely.

Michigan has many birds. My favorite might be the wood duck, with its banded neck and flat little wings. When I watch birds take off, I hold my breath. They always make it to the sky.

Every Monday morning at 9 I see my therapist, mug of green tea and honey close at hand. I take new pills now. I have a routine: oatmeal in the morning, Wednesday nights with my father. I tell my therapist about Toni Morrison’s “Song of Solomon.” Who isn’t searching for their people?

I arrange my thoughts. (No, I have never been in love and I am, in fact, afraid of men; I panic in Times Square; I grow attached to almost everyone I meet.)

I have feathers and questions.

I moved to New York City for college in 2007. School did not grow me into an adult, nor did voting for the first time or doing my own banking. These things were not confrontations. How did I arrive at the place where I could look at my disease and say, “Yes, you are here, but I will not let you take the joy out of looking for birds”? I like to think it was New York, or my newfound discipline, but it was a more internal revolution. I acknowledged my traumas: I was not crazy, just damaged. I was molting.

Columbia gave me many new things: a copy of the “Iliad” with a note saying the first six books should be read before orientation, a job in the oral history office, a sense of time management. But without my sanity — without joy — these things had little value. I knew nothing until I knew I was hardly living. Hobbes and Locke and all the philosophers in the world could not matter when each day was insurmountable and burning. In my year and a half at Columbia, I began to learn how to love myself.

I tell my therapist about my earliest memories and the bizarre geography of my family. I’m anxious and I have no self-esteem. But I am mending. Fifteen lost credits is a small price to pay for happiness. Perhaps I am learning how to fly. My bones may not be hollow, and joy will never come easily, but the beauty is in the struggle. The birds are everywhere.

Caronae Howell, Columbia, class of 2011, history major

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It Is What It is

October 21, 2009 by  
Filed under Blog

All things for a reason… A quote I have said for more years than I can remember. A quote that I honestly always believed in. 

But now I don’t. Because if that was true then why? Why didn’t my trio of saints answer my prayers? Saint Rita, all things are possible, Saint Anthony, all things can be found, Saint Jude, all things will glorify God’s name. I prayed to them every morning, asking that through the intercession of their prayers and God’s perfect will, my prayers would be answered. But when I prayed the hardest I had ever prayed in my life, they weren’t answered. Or were they?

In March 2006 we thought my husband had a cold. The EKG showed several silent heart attacks. Stents were put in and life didn’t change; for him or for me. Or so we thought.

January 7, 2008. I left for work at 7AM. A few hours later I get a message to call my daughter. “Call her now. It’s important”. Somehow I knew, even before I ever heard her voice. “He’s been trying to reach you. He drove himself to the hospital. Not to worry though, he says he’s fine”. But I knew he wasn’t, or he wouldn’t have gone to the hospital and then life changed for both of us; an open heart surgery had taken place.

For the next 3 months our lives did not include an alarm clock. We went for daily walks and slowly he rebuilt his strength. Short walks became longer ones. He told me he wished I was retired too, so this could be our life. I did wish it too. We slept late and took naps. We spent 24 hours a day together. Our world had been rocked hard and we now realized just how fragile life was and how fragile his heart was.

September 2008. My husband listed for a heart transplant. It helped that he always took care of his health. Complete physicals, eyes, teeth, flu shots, each year and every year. We ate healthy; wheat not white, pepper not salt, grilled not fried. A window had been opened with the opportunity of a new heart. We had renewed hope. 

But is this really happening? What if I just pretended we were living in the Truman Show? If I unzip the sky, could we escape from this world spinning out of control?

I had never experienced such a deep paralyzing fear.  I thought to myself; can I kiss him goodbye and let them take him, knowing they are going to take out his heart and put in a new one from a donor? He always taught me quality over quantity, always. So asking for a new heart for him, were we really then asking for quantity of his life over quality?

But I never had to make that decision… In 2 months while waiting of a donor his heart had become too weak. There was only one decision left to make, return to the hospital or call Hospice. I didn’t have to ask my husband. I knew his answer. I told his doctor I was taking him home.

I am eternally thankful for the time we had and that he didn’t have pain and his dignity to the very end. Never showing sadness or fear, he humbled me with his strength. He never lived like he was dying. He held on to my knee as I sat beside him on the bed. I knew he didn’t want to leave me. December 19 at 4:00 AM while I held his hands he left. No longer would he walk beside me in this life.

So really, how can all things be for a reason? For what reason wasn’t a donor found in time? For what reason was our world torn apart? Why during the most devastating situation I have ever faced, was the person who loved me more than anyone not by my side? How could all that we went through be for a reason?

Gone are the days of playing make-believe. Situations will enter our world that we have no control over. No matter how much we try, we can never run fast enough to avoid them. We will have questions yet never receive answers. Maybe the reality is that all things are not for a reason. Maybe the real truth is simply, it is what it is.

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