Staying Healthy

July 31, 2012 by  
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I used to be one of those people who boasted about not having a doctor because I was never sick.  But then my husband Chris needed a liver transplant, cancer treatments and a burial.  In the end of two and a half years of pain and fighting my nervous system took a beating.  But, I didn’t realize that was the case until years later.

Other things have happened since then to compound stress to my nervous system and today almost four years after Chris’ passing I know I must deal with life in a different way.

Our bodies are remarkable in their resilience.  I know that from experience.  When my husband was extremely frail and in need of a liver transplant, I couldn’t imagine how he would ever make the journey back to being a “normal” person.  I remember talking on the phone with a woman whose husband had a transplant a year before and heard her saying: “I know you’re wondering how he is going to survive this or go back to a good level of health based on where his mind and body are at now, but he will.  The body is amazing.”  And that was exactly what happened.  Chris had been in his last hours of life when he received his liver transplant.  Two months later we were getting married and walking 3 miles a day.  His body was back and so was his mind.

I didn’t realize my nervous system was damaged until I started getting skin rashes from nerve endings infections a couple of years later.     The rashes were the way my body was telling me; you need to live life differently.  If you don’t you’re going to get sick.  My unbalanced body was putting me on notice.

When I was younger, my dad used to say to me that health was the greatest gift we had.  I must confess I didn’t pay much attention or agreed with his statement – then I could think of many other things that were more pleasurable and fun than just being healthy.  I was healthy so I didn’t value it.  Years of life have now taught me differently.

Being healthy means a good balance between body and mind.  Being healthy means having freedom in life and a smooth aging process.

But being healthy cannot be confused with working out obsessively just for the sake of appearance.   Or eating poorly again just for the sake of appearance.  Or stressing oneself out to show how much we can get accomplished in a day, hour or in a minute.

Being healthy is about balance between the inside and the outside.

I’ve heard the message and I’m working on a new way of dealing with life’s obstacles.  The key is always to put things in prospective, being your own advocate while treating yourself with love and kindness.

Please read on…

The Real Secret to Staying Healthy for Life (Part 1)

by Deepak Chopra

If you want to stay healthy for life, you need to take care of yourself. That’s the conventional wisdom. It’s a frequent guilty reminder when we look in the mirror and realize that we aren’t in the best shape. “I’ve got to start taking better care of myself.” …Continued

 

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Delicious Ambiguity

June 23, 2012 by  
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Photo by Angie Rubin

“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

The above came from Gilda Radner, who died of ovarian cancer at age 43.

Tomorrow, June 24th, would have marked 9 years since I had met my late husband.  June 26th, 6 years since his liver transplant.  August 15th, four years since he passed away and August 26th would have been our 6th year wedding anniversary. Life is indeed not perfect.

When I met Chris I knew for a fact we would be a couple till old age.  When we giggled together at night at how happy we were, we thought it would last forever.  But, life has its own mind, and all we can do is show up at every moment with our full presence.

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Scars Tell Where We Have Been, But Not Where We Are Going

December 5, 2010 by  
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Candles

I watched Rabbit Hole a couple of nights ago.  The film tells the story of a couple (Nicole Kidman and Aaron Eckhart) who lose their 4 year-old son when he runs after his dog and onto the street.  The movie starts eight months into the parent’s recovery process.

There was a line in the film spoken by Nicole Kidman that hit me in the stomach.  She said something like: After someone dies the pain from the loss becomes what we have of them.

It is now 2 years and 4 months since my husband passed away.  I’ve done much and have met many people during this time.  I have also gone through many changes as a person.  But the sadness of Chris’ loss is a constant companion. That is not to say, I don’t laugh or love – I promise you I do and quite often – but I’m always aware of the hurt within.

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What Love Is

October 4, 2010 by  
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I had a dream about my late husband last night.  Although it’s been over 2 years, it wasn’t until last night that I did get to “see” him again.

In my dream, Chris was wearing a green short sleeved shirt and a sombrero with a tag hanging from the edge.  Physically he looked like the way he did a few months after his liver transplant; healthy and slim. Chris really liked that new trim body although he didn’t care for the way his body got there.

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We Can Always Start Again

July 25, 2010 by  
Filed under Blog, Popular Posts

Please indulge me while I tell you a coffee story.

My late husband was really into coffee.  As a journalist, one of his favorite topics was coffee; the different beans and the ways they are ground.

When Chris first got sick with cancer – before his liver transplant – and the ammonia started to build in his system (liver processes ammonia) his mind started to get foggy.

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When A House Is A Home

June 13, 2010 by  
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Yard pictures 012I’m sitting outside in my yard drinking a cup of coffee.  I look at the trees and see them dancing to the tune of a Sunday breeze. The sun, not wanting to impose, caresses the pink flowers standing guard behind my Buddha water fountain which offers the humming birds a place to quench their thirst.

I always refer to my house as my “Tara”.  In the classic film “Gone With The Wind” Scarlett O’Hara drew her strength from her plantation, Tara.  I’m sure, as it is with me, it wasn’t the structure of the house or its riches that made Scarlett endure anything and everything to save her house.  It was, as it is with me, because her house was her home.

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A Special Chance Meeting

January 30, 2010 by  
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Early this morning I was picked up by a friend to go on a hike.  I love hiking. Its great exercise plus I get to be outdoors and enjoy the natural beauty of Los Angeles.  For people that don’t know LA, this is a city with many mountains and hiking trails.  Sometimes, you can actually find yourself in spots where there are no people or buildings and the only sound you hear is the wind.

Forty five minutes into our hike I saw a woman running with her dog.  She was wearing a sports bra and pants which showed her Mercedes Benz scar (an inverted Y).  I know that scar.  It is the same my husband had after his liver transplant and it is the one when he was delirious from ammonia and steroids, he thought was the mark of a special type of warrior.

I felt an immediate kinship with the woman and asked if her scar was from her liver.  She said no.  It was from bowels and pancreas. I let my friend walk ahead of me and I kept pace with this woman who now was also walking.

I told her my husband had a liver transplant in 2006 and she asked how he was doing.  I told her he had passed away in August 2008 but not from the transplant but for the cancer which had returned with a vengeance in 2007.  She said she was sorry and I know she was.  I find there is a depth and honesty in people that have come near death or who are struggling to stay alive that leaves no room for superficiality.  I thanked her for her compassion.

She went on to tell me she had been in a coma for 5 days three weeks ago and out of the hospital only a week.  I tell her what my husband used to say about the Mercedes Benz scar; the mark of a warrior, of special people.  She smiles and tells me she feels she is one of those toys on springs inside a box, the harder she is pushed down the harder she springs back up.

At that moment she realized her dog was nowhere in sight and I realized I too had lost my friend.

We said goodbye and she went looking for her dog while I went looking for my friend who I find a few yards ahead of me.

Fifteen minutes later the woman runs with her dog past my friend and I and says to my friend, that I was a special person.  I thought for a second why she would feel that way before I realized for a short time I had shared with this woman compassion and understanding and I didn’t pity her, I just listened to her.  I had stopped her to say I understood and I honored her bravery.

The woman reminded me how lucky I am to be alive, healthy and to still have the possibility of experiencing many things.  She also reminded me of my husband’s strength of will and spirit.  He was having a nice meal with my nieces the day before he passed away from cancer complications.  She reminded me of all the people who every day struggle to stay alive and come to realize what is really important simply because life is precious.

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Sit Back And Enjoy The Ride

December 16, 2009 by  
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The world is a huge place; believe me, you will never know what’s coming your way.  That is life’s beauty and life’s fear.  But regardless, you are at the driver’s seat and sometimes you get to steer and sometimes you don’t.  That reminds me what flight attendants say before a flight: sit back and relax.

That’s what life is about.  Truthfully you just never know.  I’m at a cross road and I’m excited but I’m also a non-believer.   I mean, I don’t believe in fate or destiny.  And how can I believe that no matter what happens, I’m ready for it?  But deep down I know the truth: I am.  I’m going with the flow.

Today I got a call from someone who needs a liver transplant.   Many years ago he was an enlisted man and a needle went from man to man standing in line as soldiers and now he has Hep C.  The man behind him is dead and my man needs a liver, and who knows what goes on with the man in front of him.  He is still struggling with the whys.  The truth is there is no why, there is only what it is.  Get ready.

I told him to get busy.  I told him to move to another city where liver transplants happen faster.  I told him if he didn’t, eventually he would get really sick.  He said he didn’t want to be a burden to anyone while he got ill from liver failure.  I told him point blank not to worry about it; if he went into liver failure he would die fast with no time for anyone to waste their lives taking care of him.

I once knew a woman who was dying after getting new breasts.  She got one of the first ones and hers leaked.  Her cells stopped having the ability to expand and shrink.   Think about it.  Everything in our bodies contract and expand.  Her lips were frozen, her face was frozen and eventually her organs were frozen.  She died.  I wept.

We never know.

I once knew a woman doctor who was taking care of a dying old man who was the father of a Greek man.  After the old man died, the son wanted to thank the woman doctor for her care.  He sent her a note but she didn’t received.   Months later she finally got it and called him.  They went out – that was fifteen years ago – they are still together.

Twenty years ago a woman laying on a couch in Mexico City, and met a man from France.  He fell in love with her.  She took her time.  Twenty years later, they hate each other.

In Rio de Janeiro, I got a dog for my parents: it didn’t work out and I brought the dog to Los Angeles.  The Brazilian mutt became an American citizen and he doesn’t even know it.

I once met a man who changed my world and after he did he died. That is life; unpredictable, wonderful, and mysterious.   It is precious and as I have said before; ask anybody fighting for their lives, if life is worth living.  No bullshit.

Sit back, relax and hold on to the steering wheel.  You are buckling up for the ride of your life.

I wish you, and I wish myself much strength and wisdom to live life fully.  That’s what it’s all about, trust me.  Happy 2010.

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The Health Insurance Dance

October 31, 2009 by  
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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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Organ Donation, A Seriours Matter

August 19, 2009 by  
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I know organs and politics is a bit outside the scope of The Love Project but please indulge me today.

I just read about an article published in a Swedish newspaper saying that Israeli soldiers were removing organs from dead Palestinians.  I find this article outrageous.  It is based on the account of families whose loved ones died in battle with Israelis and I’m sorry for all the useless deaths.

But it seems that the Israeli army has a policy of conducting autopsies on Palestinians killed in battle.  I don’t really know the reason but it might be that the authorities want to make sure the killings are not executions.  But truthfully I don’t know.  But one thing I do know; autopsies result in scars. 

So this free lance journalist, Donald Bostrom, says in his piece (http://www.cnn.com/2009/WORLD/europe/08/19/israel.sweden.organ.harvesting/index.html) that the Palestinians families told him their loved ones bodies came back with stitches (yeah?) and that proves organs are being removed.

I think Donald’s piece is meant to create a scandal to simply promote him.  All of a sudden this journalist that no one has ever heard of is making his name known. 

Anyway, moving past that, I’m going to broach a sensitive subject, that of organ transplant.  My husband got an additional 2 ½ years of life because we were able to get him a liver transplant.  But for that we had to move to Jacksonville Florida and wait till almost death was embracing him.  Many in his situation were not as lucky.

Today, August 19, 2009 there are 103,133 people waiting for an organ donation in the United States alone and unfortunately a high percentage of them will die without the chance for a second chance. 

But how many people die every day?  Do they need their organs?  Couldn’t the deaths offset the need for organs?

Let me tell you what my husband and I did in the 2 ½ years he got from his donor: we got married, we built a wine cellar (we were both passionate about wine), we re-did our garden, he got to see me produce a film I had fought so hard to make and we loved each other fully and completely. 

I wish people would donate the organs of their loved ones when they no longer need them. 

I wished we as a people would be more loving towards others in need.  I am signed up with the California organ donation www.donatelifecalifornia.org and I also have it in my will, that every part of me that is still usable when I die should go to someone that could make good use of it.

I don’t think the Israeli army is contrabanding organs, but isn’t it time that we start thinking a little bit more about the people that are in need instead of the ones that are gone?  Let me know what you think.

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