Tag Archives: Dying

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.

It ain’t over ’til it’s over

Several weeks ago I got a call from a friend who is also battling stage IV lung cancer. He’d gotten bad news; very bad news. His cancer had spread in such a way that his oncologist felt he had only three months to live with treatment but half that long without.

My friend was devastated, as was I. We talking openly about dying—something he couldn’t do easily with his family. I told him that our connection would remain no matter what happened next. He said he loved me. I had the feeling that this might be the last time we spoke.

But I also reminded him that there was really no way to know if this was it—that I too had once been told I had come to the end of options and yet here I was. That he should hold onto hope, because his situation could still change.

Yesterday I got a text message from him. His latest MRI and CT scan had showed reduction of tumor throughout his body.

We spoke again last night–this time the mood far less somber. He was still in a tough spot, but could once more see the horizon. A return to chemotherapy had reduced his tumor burden but he was already looking for the next potential therapy. He sounded like a man with a future.

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.