Tag Archives: Dying

The can and the can’t

Posted on October 18, 2020 | 6 comments

Living with a terminal illness is a lifestyle. Certainly not by choice, without a doubt an imposition, but also not a passing phase.

If you want to survive, you have to adapt.

And I have. Uncertainty, discomfort, so fucking much wasted time (waiting rooms–so aptly named), a negative balance in my bank account. I got it.

However, there is one thing I simply cannot get accustomed to. The dying.

Not my own mortality, which I have made a certain peace with. Nope. The fact that I lose so many I care deeply about.

There is no getting comfortable with the constant cycle of loving and losing. Yesterday I learned that someone I feel an intense connection with has entered home hospice. And I am on edge, bracing for the inevitable.

It never gets easier. This, above all else, is the reason I have adapted the war metaphors. Fifteen plus years into this journey I have lost hundreds of friends to lung cancer. It is almost unfathomable. However, in the context of battle, there is the small solace of a common enemy. And I, as someone still standing, must continue to fight.

Not just for my own survival, but in honor of all those who have been taken.

I know how dearly each of them wanted to stay, and what an incredibly random thing continuing survival is. Never a foregone conclusion. Struggle is the only given.

It would be oh so lovely if there was another way. However, in love and war, one must always be alert. That, and grateful for the small mercies.

And I am. Ever vigilant. But also always thankful.

xo

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Death

Posted on February 3, 2020 | 19 comments

I think it is important to put this out there. I am not afraid.

Nope. When I say death is my familiar it is not merely a throwaway statement. Seriously. Death has been my persistent companion for so very long now that it has lost the ability to intimidate.

I have thought about death a lot. Not because I’m morbid but rather because I am terminal. And I have come to the conclusion that it is nothing to be feared.

Not long ago I spent several hours with a close friend who was on their deathbed. And she was afraid, very afraid. This had to do in part with the fact that she was way too fucking young to be confronting the end of it all, and there is no way she could have been prepared.

However, I did my best to comfort her. Dying is not easy, I said, but death is. And then I told my friend that in my work on death I had come to the conclusion that it is a big giant release—and—contrary to what we are often led to believe—an ecstatic experience. The French refer to orgasm as ‘la petit mort’ or the little death. This is not, I think, a coincidence.

Death is a kindness. A place beyond pain and suffering. It is a letting go into that beautiful scrum of all that has lived before.

Dying is difficult because it is a separation from all we have known. In this respect, I am no different than most. Given a choice, I am not ready to die. In fact, a consummate late bloomer, I feel like I’m just getting the hang of this particular lifetime and I would prefer to have some more time to hone my craft.

I still have a lot of work to do when it comes to getting my physical affairs in order. I’d like to spend more time with friends and family, see more of the world, make more art and more love too 🙂

However, spiritually, I am ready. I have done the hard work around my own mortality. And because my love for life is truly unconditional, I am not married to outcomes. It’s all good, no matter how this ends.

Because it will end. For all of us. This, our life on earth. After that? Who knows. As an atheist, I like to think my energy will just get stirred back into the whole of the universe. You may have another vision–equally comforting.

But know this. I don’t think we need to be afraid. Our death is harder for those left behind–the people who grieve. And even then, I have learned that when someone I love dies, they continue to live on in my heart and my head. I just can’t call them up to go to lunch. But I sure as hell can go on loving them.

That’s the thing. Our flesh is not eternal, but love, as an intangible, can be.

Live now. But leave with love.

xo

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If

Posted on January 19, 2020 | 17 comments

When I was a wee child I would recite a prayer before bed each night:

Now I lay me down to sleep and I pray the Lord my soul to keep. If I die before I wake, I pray the Lord my soul to take.

And then my parents would turn off the light and shut the door to my bedroom, leaving me alone with that happy thought. A stupid little prayer that scared the shit out of me and was undoubtedly at least partially at the root of a life long case of acute anxiety. I mean, WTF? No wonder I suffered from nightmares.

I thought of this prayer today as I have begun to preface so very many of my thoughts with ‘and if I live.’ Irony free.

Only someone who has been in my position where death is not just a possibility but rather a probability can understand.

It is rather like being in an out of control vehicle, hurtling headlong to a bluff overlooking the ocean. There is a remote chance that you will be able to steer the car to safety at the last moment. However, as you don’t want to waste a moment of what might be your last time on earth, you are also doing your utmost to enjoy the scenery.

It is that flipping surreal.

I have a CT scan on Tuesday which will give a clinical assessment of where we are at. From the objective of the person who is in this body, I can only tell you that it’s getting harder and harder to breathe in here. Hardly encouraging.

And yet the view out the window? Still extraordinary.

xo

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Funk-ness

Posted on November 10, 2019 | 4 comments

I have been feeling rather blue. Deep blue. Indigo. A fatigue that is physical, emotional, spiritual.

Not surprising, I suppose. In sixteen days I will turn sixty. Remarkable, really. I never thought I’d have the opportunity to grow old. It is a milestone, in so very many ways.

It also means that I can now say, with complete accuracy, that I have been living with lung cancer for one quarter of my life.

That’s a long time. And obviously primarily a positive–surviving has always been my objective. But it’s also really sad.

If my life is a pie, then cancer represents an enormous slice.

Choosing to become an advocate has lent my diagnosis purpose. It has been an opportunity to make some good out of what can only be characterized as a personal tragedy.

But there is much that cancer has taken that I simply cannot reclaim/override.

Innocence–mine and my children’s–financial security, the bloom of youth.

And then the loving and losing. It is both the best and the worst part of advocacy. Relationships which transcend the ordinary. Incredibly special connections, each of which has enriched life to an almost unimaginable degree. Precious. Precarious. Often fleeting.

This–and my own mortality. Each new day exhilarating but also exhausting. Life so full of possibility but also portent.

Overwhelming. Odd, glorious, awful. But also all I’ve got. This is it. This is mine. My life.

Until it’s not.

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How many ways can cancer break your heart

Posted on March 7, 2017 | 19 comments

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.

elizabeth-dessureault-and-18-month-old-son-jack-for-story-by

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.

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Posted in Connections, Dying, In memorium, Matters of the heart, Uncategorized

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It ain’t over ’til it’s over

Posted on June 27, 2016 | 14 comments

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.

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Posted in Death and dying, Uncategorized

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A very personal legacy

Posted on March 23, 2016 | 21 comments

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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.

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