Category Archives: Death and 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

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

*thinking of you, Kimberly.

 

 

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.