We Can Always Start Again

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

I’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

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.

Sit Back And Enjoy The Ride

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.

The Health Insurance Dance

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. 

Organ Donation, A Seriours Matter

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.

My First Sip

Written by Chris Rubin

I walked down into my basement a couple of weeks ago and rummaged through the wine racks, the small wine refrigerator, even the haphazard, precarious piles on the floor. I write about wine for a living, so I have more than the average person – okay, probably more than 50 average people put together. I needed a really special wine, so I searched through the 1000 or so bottles I had amassed over the past decade.

I kept being tempted, though, to grab something less than extraordinary, something of which I had several vintages, or several bottles from the same year. I had to fight with myself to pull out a one of a kind, one of the few big guns in my collection. I soon unearthed a ’96 Penfolds Grange and knew that it was the right bottle to open for this occasion.

I brought the dusty bottle upstairs, where my wife, my sister and her girlfriend waited. I grabbed four Riedel syrah glasses (Grange, Australia’s best-known wine, always features syrah as the dominant grape, and this vintage was 96% syrah, with just a splash of cabernet) and a corkscrew and joined them in the living room.

It was Thursday, December 28, 2006, and I wanted to open a bottle that would be memorable. The Grange would qualify, I suppose, for any wine lover. But the first sip that evening would have special significance for me.

Nearly nine months earlier, on April 5, I first became aware that I was seriously ill, and that the problem was in my liver. I had experienced intense pain the day before on an overnight flight home from New Zealand. Even in the comfort of Business Class, with a fully reclining seat/bed, I was in agony. Nonetheless, I had gone to a family dinner the evening of the 4th, bringing along a precious bottle of Sea Smoke Ten pinot noir. Though the wine was delicious, I couldn’t drink much as I simply did not feel good. My family gladly took up the slack.

Most nights before this, I had opened a nice bottle of wine and shared it over dinner with my wife. But the Sea Smoke turned out to be the last wine I drank as a diagnosis of a vascular tumor in my liver soon followed. The malignancy was so rare my older brother labeled it a “boutique” cancer, a play on the small production wine we had so recently shared.

When it became obvious I was no longer able or allowed to drink, I wondered if it would be difficult to give up. Luckily, the answer was no. I happily opened and poured wine for my wife and often inhaled the aromas, but felt no urge to drink, or even taste.

I needed a new liver, and I needed one fast, and the doctors at Cedars Sinai had told me they did not expect to be able to find one in time. In early June, my wife and I relocated to Jacksonville, Florida, to be close to the Mayo Clinic, perhaps the top facility in the country for liver surgery. I was no longer really able to travel, so we got there by air ambulance, a fancy term for a not so fancy yet very expensive private jet complete with a stretcher and a team of nurses.

Ensconced in our condo and awaiting the call that an organ had been found, I spent the days at the hospital undergoing a series of tests and was in and out of the Emergency Room with a variety of related ailments. A glass of wine each night helped my wife maintain her sanity, but drinking was the furthest thing from my mind. I was too busy trying to survive.

Miraculously, I got my liver just three weeks after arriving in Jacksonville, on June 26, and was home a scant three weeks later. I had lost 70 pounds and, temporarily, my mind, but somehow made it through the ordeal, even if I looked more like a concentration camp survivor than the well-fed food and wine writer I had previously been. I slowly resumed my exercise routine – a daily three mile walk around the reservoir in my neighborhood – and returned to work and other facets of a normal life that once seemed hopelessly distant.

As Christmas approached, I realized I was nearing the six month anniversary of the surgery – a major watershed as I would be moving past the most dangerous phase for organ rejection and other complications from the transplant. I had switched to a diet of mostly organic foods and, of course, continued to eschew alcohol. I felt fantastic by almost any measure.

But wine was a significant part of my work and my life, and I hated to imagine a future without it. Thinking ahead to the day I would hit my main liver doctor the big question, I asked a couple of specialists along the way, and neither had any objections. In fact, the tumor specialist I visited in New York turned out to be a major wine geek, and he advised me to “spit the crap, and drink moderately of the good stuff.” Good advice for anyone, really, and close to how I had lived my life with my first liver.

Still, I knew I would abide by the decision of my liver specialist at Cedars, as he had been part of the team that diagnosed me and had been overseeing my post-transplant care since my return to Los Angeles. I had given him a bottle of Krug Champagne, taken from my cellar, before I left for Jacksonville. It was a genuine token of my appreciation – and it seemed likely I’d never be able to drink it, one way or another. And if it helped sway his decision, well that was just a bonus.

Finally, I gathered my courage and sent the question by email. I had worried for months that I would never be allowed to drink again, and that I would have to find a new field of work. Naturally, surviving was far more important than continuing in my previous job, but I needed to work, and I’d have to find another subject if I weren’t allowed to drink. So I was thrilled to find out my doctor had no problem with “moderate” consumption of wine for me. I didn’t even bother to ask him to define the term as I knew my wife’s interpretation would be far more strict than his – and the one I would most likely have to follow.

I sat down on December 28 with three people very close to me to celebrate one more step towards reclaiming my earlier, “normal” life. I wondered as I opened the bottle of Grange if I had been too ambitious, if maybe I should have started with a simpler wine, sort of like training wheels, to ease me back into it. But then the cork was out, and the decision was made. Luckily, I had not forgotten how to drink. It is, apparently, much like riding a bicycle: it all came back to me in a second.

I filled each of the glasses about one third full and passed them around. Fortunately, I had retained my wine swirling skills by muscle memory: there were no embarrassing missteps, spills or other accidents on this first outing. Finally, I raised the glass to my nose and inhaled, savoring the aroma – a total knockout in the case of this bottle.

I silently toasted the anonymous donor and his or her family; their thoughtfulness and generosity at what must have been the most difficult time in their lives had literally saved my life. And then I took that long-awaited first sip.

Wow – it was explosive. I was afraid something like wine might seem trivial in my personal new world order, but I was immediately blown away by this rich, complex wine. Sure, I could say it had strong cassis aromas and a subtle hint of licorice, but – far more important – the wine was life itself. Bottled nearly a decade ago, this Grange was vivacious and bursting with energy. I temporarily forgot my long, enforced abstinence and was caught up in the complex web of flavors. “Really nice,” said my sister. Yes, it was. We all sat in silence, assessing the scale of this massive wine.

Was I just caught up in the moment? Would a bottle of plonk have had the same effect? My emotions had been ramped up ever since the surgery, partly from the anti-rejection drugs, partly from the sheer thrill of being alive. So it was probably both the greatness of the wine and my general heightened emotional state that produced such a profound effect, much as I had wept at the sheer beauty of the music when listening, post surgery, to Joseph Arthur, Peter Gabriel and Ludwig van Beethoven on my iPod in the hospital bed.

Websites showed a price range from $250 to $450, perhaps even higher, for the ’96 Grange. Robert Parker awarded the wine a 93 on his 100 point scale, with the provision that the score might go up as it reached optimum age. For me, it was simply off the charts.

Now, having learned the hard way that life is truly too short to save just about anything for a “special” day that may or may not arrive, I will no longer hoard these big wines. Anyone who has been through a similar life-threatening and life-altering experience will almost certainly tell you that every day you are alive is special.

Most of all, it felt miraculous to be sitting there, back to 100% good health, surrounded by loved ones – with the added bonus of a glass of very fine wine in hand. I got woozy from just a few sips. Not drunk, really, but more an intoxication of the senses. I basked in the warm, mellow feeling that permeated my body as I remembered – and experienced again – the unique warm camaraderie of people sharing good conversation and a great bottle of wine.

Go to www.donatelife.net to find out how to become an organ donor.

Chris Rubin, an independent journalist wrote for Variety, Travel & Leisure, Robb Report, Rolling Stone Magazine, LA Times, LA Weekly and many other publications on music, restaurants, wines and spirits.

Chris Rubin died on August 15^th 2008 from complications of a rare vascular cancer. The above piece was written in 2007.