Category Archives: Dying

Read this.

This blog by my friend Arash Golbon may be the most true and important thing you’ve read yet regarding lung cancer. Arash gets right to the heart of what losing your beloved wife and the mother of your two young daughters is really like. In a word, devastating.

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Molly died last month…… I still have a hard time saying it, but the person who I spent my last 25 years with died last month. This means no more birthdays, no more Thanksgivings, No more Christmases…..means no more anything. I watched a part of me die that night; a part I will never get back.

Molly’s health declined rapidly four months before she passed. I left work and devoted my life to taking care of her. I was fortunate enough to have a very close friend name Elle who works for Mission Hospice. Elle arranged the best palliative care group possible for Molly. She arranged for doctors, nurses, caregivers, physical therapist, etc. My parents even moved in with us to help. Molly had the best care anybody can ask for.

But ultimately I took care of Molly. She was my responsibilty. Hollywood has made a terrible job portraying what a good marriage is. Marriage is not about romance and candlelight dinners, it’s about two people committing to take care of each other. That’s true love. I had a great marriage.

I loved taking care of Molly. It was very hard work as she was weak and could not walk far. The cancer in her lungs was so advanced that she would have painful shortness of breath throughout the night. It would sometimes take me half an hour to get her breathing comfortably just to have the entire process start again an hour later. Toward the end when Molly was so weak that she couldn’t talk, I knew what she needed just by looking in her eyes. Molly’s blue eyes had become even more radiant due to her sudden weight loss. Her eyes told so much.

During those last months, Molly and I talked about of a lot of things. Twenty five years is a long time to be with the same person. We had definitely made our share of mistakes, but those seem so unimportant compared to how much we had done right.  We talked about the love we had for each other, and all the adventures we had had.  Elle said I was the only person who could console Molly.  I loved when she smiled, I loved the sound of her breathing when she slept, her comfort brought me so much pleasure and peace. There are nights now when I look over to the empty side of the bed and imagine her still lying there sleeping and breathing. I miss her smile, I miss the sound of her breathing.

When Molly died on those early hours of morning, I sat with her alone despite repeated pleas from my aunt. I was her husband and I was going to be there until the end. I kissed her head and lips, and said good bye. I promised her that I would take care of her daughters and raise them to be kind, compassionate humans. I sat there and looked at her until they took her away. Then I felt the pain.  It was the sharpest pain I have ever experienced in my life. Part of me died there with her. A major chapter of my life was over.

The days immediately before and after Molly’s death brought an unprecedented showing of human kindness. Our story had touched so many people. Support in every form poured from friends, from family,  from complete strangers on the street who had heard about us. Some of the kindest notes we received were from children. For most of these children, this was the first time dealing with death. I applaud the parents who not only did not keep their children away, but actually invited mine into their homes. I wish CNN would have this as part of their news flash.

It’s just the three of us now. We miss her a lot, but we are trying to go on. We are lucky to have so many people who care about us. We are lucky to be living where we live. We are lucky to have loving family. Every day has it’s joys and tears. We know many more sad days are ahead of us, but we also know Molly would want us to be happy eventually.

 

You can read more of Arash’s posts at livingwiththreegirls.com

How many ways can cancer break your heart

Seemingly the possibilities are endless.

Upon first hearing ‘you have cancer’ we were forced to face the specter of mortality; in our face and way too close for comfort.

Next up was the impact our diagnosis had on friends and family and if we were parents, our children–now suddenly faced with challenges that had no rightful place in the happy childhood we’d imagined for them.

Loss was a word that soon figured largely in our everyday existence, with bodies that suddenly looked and felt very different as cancer became part of our identity on both the meta and purely physical level.

Stress and anxiety—our finances, interpersonal relationships, jobs. Everything was suddenly at risk.

However, that didn’t stop each of us from trying to put a brave face on. We sucked it up and made an honest effort to find the silver lining in cancer. Certainly there was opportunity for personal growth, but at a cost oh so dear.

And then we discovered that the one really good thing to come from our disease was each other.

Since my diagnosis, I have had the privilege of knowing, interacting with and often growing quite close to an incredible assortment of extraordinary individuals. Brave, gracious, generous, kind, caring, fun. Lovely, lovely people who have made my life so much richer.

However, there is an obvious downside to falling in love with others who are battling cancer and that is the potential for heartbreak.

Last week the lung cancer community lost someone who had touched the hearts of many. Maybe it was her youth, the fact that she was a young wife and mother, or perhaps it was Elizabeth Dessureault’s radiant smile and outgoing personality that made her so appealing and accessible.

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Her passing took us each by surprise and the ripple of grief soon became a big wave. Shock and sadness turned to anger and for some, fear.

The truth is, you can have the best oncologist in the world (Elizabeth, like me, saw Dr. Shaw) and although your odds may be improved, the course of this disease remains ridiculously unpredictable.

It is all so very disheartening.

And yet. There is only one way to go and that is forward. You and me. Live and love some more. Because every moment is precious and no one is assured a tomorrow.

A very personal legacy

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My journey with lung cancer has involved a lot of ups and downs and sometimes the downs have been a slippery slope indeed. In the summer of 2008 I was told I had only three to five months left to live and death quickly became my familiar. Fortunately, crizotinib intervened just in the nick of time. However, because I am so far out on the medical frontier, whenever I have started an experimental therapy it was with the knowledge that there was not yet a plan B. Each time my cancer has crept back, so has the specter of dying.

Several years ago my health had taken a serious turn for the worse again and I started thinking about the way in which I would die. The most likely scenario was that I would be in a hospital bed, hooked up to a lot of tubes. And I decided this was not what I wanted.

Alice and I had already spoken about my desire to donate my lungs after I died. At my next appointment I had a question for her. If my tissue was frozen, would it still be viable? I then explained to her that in order to take back some control, I had come up with an exit plan. Simply, that I would walk out into the woods (it was winter) and lie down in the snow until I had frozen to death. I went on to say that I had given this a lot of thought. As the daughter of someone who had committed suicide (my first stepfather flew his plane into a cliff on his sixty-fifth birthday) I knew how devastating it was to have to deal not just with a suicide, but with one in which your loved one’s body is disfigured. That I felt my family would understand suicide under these circumstances (as a way to avoid suffering and a loss of control). That I had done some research and although I would be blue (and crystalized, kind of cool), it would not be like dealing with a gunshot wound or some other violent form of death. But I needed to know if frozen lungs would be ok.

I told you Alice can just roll with things. Her response? ‘I’ll have to look into it’.

Months ago I was interviewed for an article in STAT about the ups and downs of life (and death) when you are dependent upon targeted therapies. Bob Tedeschi was the reporter for the piece and the first time he interviewed me I told him my story about walking out into the woods. Bob, like Alice, is someone who just rolls with it. I am happy to say that I did not frighten him and that we have, in fact, become friends.

Bob is a tremendous writer and he is tackling all sorts of issues pertinent to end of life. His latest article is about rapid autopsies; hence my rather weird (but not if you know me) share.

It’s not easy thinking about our personal demise and harder still to discuss it. However, my own experience has been that the things we fear the most are those which we don’t understand. Talking about death–making it my familiar–has eased much of my personal anxiety. And as for those biopsies? I don’t want my personal contribution to medical research to end with my passing. I urge each of you to take the awkwardness out of this dialogue (for both family and your oncologist) by bringing it up yourself. Consider it part of your personal legacy.