Category Archives: Death and dying

Terminal, incurable, alive.

It’s a heady mix. You have advanced cancer which is, by definition, both incurable and terminal. And yet, thanks to ‘the wonders of modern medicine’, you’re alive–aka–not dead yet.

Because you prescribe to not just a glass half full but rather a ‘my cup runneth over’ mindset, you always try to stay focused on the bright spots. First, waking up in the morning. Never, ever, taken for granted. The chance to see your children even a few minutes longer–mind blowingly awesome. Meeting fellow travelers on this friggin ‘journey’–others who’ve been smacked upside the head with cancer–your life has been made oh so much richer by each and every one of them. And then there is the fact that you get to hang with your oncologist (a goddess) and a bunch of swell nurses—perk and more perks.

So yeah, you’ve been fortunate. And at the moment, you are on a targeted therapy that is keeping your cancer in check. You don’t even look as if you’re sick, let alone terminal.

Which, by the way, makes it very easy for those around you to forget that you have cancer at all.

But you, you’re always aware. Friedrich Nietzsche once said “That which does not kill us, makes us stronger.” Bullshit. Sometimes it just keeps on trying.

Each day you continue surviving is an achievement. It is also a tremendous struggle–physically, mentally, emotionally, financially. An endless struggle too, as there is no top of the mountain, no victory lap, no cure in sight.

The heady mix becomes a mind fuck. If you are lucky, you have adequate support. Enough resources so that you don’t live in a constant state of anxiety; friends and family with sufficiently long attention spans who don’t drop away when terminal becomes chronic.

Because the truth is, nobody wants to think about cancer all the time. My marriage ended, in large part, because my partner found our lives too ‘cancer-centric’. I’d break up with cancer this very moment if I were able to, but it seems we are one and the same. Cancer doesn’t just inhabit my body, on a cellular level, it is me. My own selfish, nihilistic and wildly dis-obediant cells.

Sigh. Living well may be the best revenge and most of us do whatever we can with what we have to work with. I’m certainly not interested in becoming a schadenfreude. However, when living itself (liv·ing: a : having life) is a big fat uncertainty, then living well often requires more psychic energy than a person can muster.

Short of curing cancer there’s not much you can do other than to be understanding. And supportive. It’s not easy living with the knowledge that you are terminal; harder still to remain happy while doing so. Honor that.

It’s a jungle out here

Pretend for a moment that one hundred people are standing in front of you. The only thing you know about them is that they all have lung cancer. One at a time, each person approaches you and then shares some intimate detail about their lives. Sometimes you sense that you have much in common with the speaker, sometimes little. In each case you get an overwhelming sense of their humanity.

You are thinking about how you would like to get to know some of them better when I drop a bombshell: only eighteen of these people will be alive in five years.

It shocks you but I assure you I have not told you this merely for dramatic effect; statistically speaking, this is an actual scenario. The five year overall survival statistics for all stages of lung cancer cancer are only 18%. At stage IV, that number drops to 2%, or just two individuals out of one hundred.

Statistics only tell part of the story because numbers are not nearly as compelling as living, breathing human beings.

Now imagine what it’s like to be one of those hundred; that you too have been diagnosed with lung cancer; that you too will fall somewhere along this statistical curve.

It is a terrifying feeling, and isolating as well–as many of us feel that friends and family can’t really comprehend the sometimes debilitating anxiety that is part and parcel of our diagnosis.

We often combat that feeling of isolation by connecting with others people living with lung cancer–through support groups, social media, summits, or advocacy work. However, this network can become a double edged sword, as we are now invested in each other’s outcomes. When one of us passes away, a collective shiver runs through the entire community. We grieve, we rage, but we also rightly wonder if we might be next.

Over time, it becomes a trauma–this mix of fear and sadness. And for those whose cancer is considered incurable–and in the case of lung cancer, that would be most of us–there is no post to our traumatic stress. It is ongoing, or OTSD.

We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.

Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?

As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.

I’ve now been living with the idea of dying for over twelve years–more than 20% of my time on earth. How do I do it? One day, one moment, one person at a time.

 

xo dedicated to all we’ve loved and lost–far too young, far too many

 

 

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.

When Breath Becomes air

If you haven’t yet read When Breath Becomes air, Dr. Paul Kalanithi’s extraordinary book about his all-too-brief experience with non small cell lung cancer, you should. Once I picked it up I found it difficult to put down.

Part of what makes this book so special is that Paul was a physician–a neurosurgeon–and so perhaps had a leg up on most of us in that he was able to immediately distance himself from the disease with a dispassion that is difficult for a layman. I had to work very hard to not take my own lung cancer personally, but Paul was able to come to a place of acceptance/grace with remarkable speed, and this lends his telling a particular elegant universality.

When Breath Becomes Air was preceded by an essay by Paul in the NYT that garnered a huge response from readers, ultimately leading to a book deal. There was a lot of buzz in the lung cancer community prior to publication of When Breath Becomes Air, in part because some of my friends and peers were personally acquainted with the Kalanithis. Aside from the pre-publication chatter my own introduction to Paul’s book was this touching essay by his wife Lucy, which also appeared in the NYT. I kind of fell in love with Dr. Lucy Kalanithi after reading it and have been hoping for some time that I would have the opportunity to meet her.

Linnea, Lucy and Diane

Linnea, Lucy and Diane

Well a couple of weeks ago I got my chance, as the Harvard Book Store sponsored a conversation between Lucy and Neel Shah, an assistant medical professor at Harvard Medical School. The venue was the Cambridge Public Library and my friend Diane and I (in true fangirl fashion) got there super early with seats front and center. Better yet, before the event started I had returned to the lobby in order to refresh my parking ticket just as Lucy was arriving. She recognized me from social media and came right up to say hello and gave me a great big hug. Now I was smitten.

Once the event got under way, Lucy read some passages from the book, conversed with Neel for a bit and then took questions from the audience—many of whom were medical students. Some of the questions were of a truly diffuclt nature, yet Lucy was unfailingly warm, patient and kind. Afterward a long line formed for autographed copies of the book, and Lucy took her time with each and every person. A physician herself, I can only imagine that she brings the same care to her practice.

Read the book, and better yet, if Lucy Kalanithi comes to your town, go!

This part’s really hard

When I was diagnosed with lung cancer I immediately understood that loss was going to play a big part in my life. What I didn’t understand was that it wouldn’t all be personal. You see, I never anticipated becoming close to so many others with cancer—it just wasn’t part of my initial game plan.

However, once I was restaged to IV I knew I couldn’t go it alone anymore and I began to seek out others with lung cancer. Not long after I also took my first steps into advocacy and before I knew it, I had a lot of friends who shared my diagnosis.

The upside to these relationships is obvious–no one knows better what it is like to have this disease than someone who is living with it. The downside is that cancer is a brutal and relentless foe and a lot of my friends haven’t made it.

Each time it’s a real punch in the heart.

Yesterday I learned that my dear friend Ginger Wyler Saunders had passed away. I met Ginger some years ago in the Whole Foods down the street from MGH. We were sitting across from each other at a crowded table during the busy lunch hour and all was chaos around us. She looked at me and said ‘We are the two quietest people here.’ With that we began to chat and I learned that she had also been diagnosed with lung cancer–twenty six years earlier. I think I asked her if I could touch her–I was so amazed to meet someone who had lived for such an extended period post diagnosis.

Anyway, we became pals. We emailed, met for lunch, and called occasionally as well. Sadly, Ginger was diagnosed with a second cancer; ovarian. She fought tenaciously but gained little ground. Yesterday her daughters let me know that she was gone. Today I sat at what I thought was perhaps the same table at Whole Foods. And I wept rather openly as I ate. I love you Ginger–cancer can’t take that.

Linnea and Ginger

Linnea and Ginger 3/11

Wish upon a star

The night before last I wakened in the wee, wee hours and couldn’t fall back to sleep. I lay there thinking about all the things I wanted to do and how long it might take to accomplish them all. I thought to myself “I need another thirty years”. As I was thinking this I turned my head to look out the tall windows adjacent to my bed and at that moment a shooting star streaked across the night sky.

Boom—as my kids might say. There and then I decided it was an affirmation. In the past decade I have sometimes measured my life span in months. At my most optimistic I plan perhaps two years out; in the absence of an effective therapy and at the rate my cancer seems to grow, that might be a reasonable projection.

Denial has never been my style. And yet…I am also a bit of a dreamer and I believe in the power of a positive attitude. To wit—when first diagnosed with lung cancer I understood only too well the odds that I faced with an overall five year survival statistic of 16%. When you are stage IV, as I am, that statistic drops to a dismal 4%. I have helped myself deal with this reality by picturing a bell curve—in my mind’s eye I am waaaaay out on the end.

In reality I have achieved outlier status; living well beyond my ‘expiration date’. However, due to the pernicious nature of my disease I am unable to relax. As I once said to a friend whose cancer had taken a turn for the worse, sometimes the thing that’s trying to kill you just keeps on trying.

Two nights ago a shooting star gave me the courage (abandon?) to allow myself to believe that I could live another thirty years. I mean, what’s the harm? Suddenly my future stretched before me like a Texas highway—almost endless.

It’s a view that I could look at, well…forever.

Losing our first love

Two of my favorite photos of Evalynn

Two of my favorite photos of Evalynn

Early Monday morning—early enough that it couldn’t be good news, I received a phone call from our stepfather Jim. My mother Evalynn had passed away unexpectedly.

Mom had been in poor health for a long, long time. Two cancers, chronic back  pain, and advanced macular degeneration that left her almost blind. She’d gained a lot of weight, had limited mobility, and was in the early stages of dementia. Jim, who is eighty one but has the mental faculties and constitution of one years younger, provided all of her care.

Given her poor health, we all knew Mom’s time was limited and yet I often joked that she would outlive me. Truth is, I thought she might.

Mom was tougher than nails, one of her pet expressions. Meaner than spit sometimes too, if you didn’t see things her way. I was her first born; she liked to say I was the one she made all her mistakes on. John and Bink might argue that she saved a few for them.

However, there was no mistaking the fact that she loved us all dearly. Our conversations usually ended with “Do you know how much I love you?” or “Do you know how proud I am of you?” And we did—those things we never questioned.

She was, undoubtedly, our first love. It was her face and voice we memorized; her arms that held us. One of my earliest memories is the smell of the sun on her skin.

The three of us are putting together her memorial service and my sister emailed a list of fond memories to my brother and me. I think it nicely captures Evalynn, although I couldn’t help but add a few comments of my own (in italics):

Driving a motorhome and a massive boat as well

Backing up a hitched trailer flawlessly

Teaching us to paddle a canoe (stealth like, like Native Americans)

Always being the first to spot wildlife

Hitting a pitched ball with a bat (far, far, far)

Saying, and meaning it, that we’d never be able to run as fast as she could

Painting, Drawing, Sculpting (making just about anything with her hands)

Designing and decorating homes

Riding Motorcycles, Shooting a pistol

Dancing to any style of music (fabulous dancer)

Singing (even harmonizing)

Swimming a mile (diving beautifully; used to be a lifeguard)

Playing a musical instrument (the saxophone)

Mastering multiple sports (tennis! swimming! baseball!)

Fundraising for organizations she believed in (charitable work)

Baking coffee cakes

Reading in the bathtub

Charming her way out of speeding tickets

Charming most people, for that matter (quite the practiced flirt)

And laughing so hard she’d fall down

Beautifully said Binky. I’d also add that Mom was absolutely devoted to two out of her three husbands (sorry Dad!), adored and doted on her parents Effie and Roy, and never stopped looking up to her older sister Claudine. She played an important role in the early lives of Jemesii and August and my brother John’s daughter Shannon, as we were both single parents at one time. Our mother Evalynn was smart, beautiful, talented, capable and one of the strongest and bravest people I’ve ever known.

I miss her terribly already.