Category Archives: Surviving

Why I freaking love Facebook. And all of you.

Sometimes a girl just needs a hug.

For a laundry list of reasons, April is not my favorite month, even though my beloved youngest son was born on 4/20/97. His original due date was the 22nd, and I hoped against hope that he would choose another day to make his way into the world. The 22nd felt like a bad omen, as my stepfather had committed suicide on that date, also his 65th birthday, twelve years earlier.

And then, of course, I was diagnosed with lung cancer in April, further un-endearing me to the fourth month.

However, I can’t blame everything on April as the shit hit the fan in late March, when I got a text message from my oldest son asking if I was awake yet at 7 am in the morning, 5 am his time.

Never a good thing—an early morning text. I called him immediately and his first words were, ‘Mom, I’m in the hospital but I’m alright.’

Barely. The previous afternoon he’d been cleaning beakers out behind his lab (he works in the legal cannabis industry) and one of them had exploded. The resulting shrapnel had severed several arteries in his neck. His quick thinking coworker dialed 911 and the strippers next door who were sunning themselves (can’t make this stuff up) came running with towels to tourniquet his neck, which was gushing blood like the stuff of horror films.

He was rushed by ambulance to the ER and into emergency surgery. A salivary gland and a nerve had also been severed, he lost so much blood he required transfusions and they told him he missed his carotid artery by millimeters.

A mother’s worst nightmare.

I came down with the flu and then pneumonia shortly thereafter–the stress/illness link undeniable.

Then a week ago we experienced yet another family crisis. Like much of the tough stuff in my life, this one’s going to need to remain private, but I am currently in the midst of one of the most challenging times I’ve ever experienced. And that’s saying something.

About that hug.

Three days ago I posted this on my Facebook feed:

It’s been a hard week in a hard month. I am in need of a giant group hug.

No details, just the ask. And they started pouring in. The likes and the loves (137 of them to date) and an additional 135 personalized hugs–many of them from people who were probably in need of a hug themselves (and that’s the beauty of a group hug–it hugs back).

My virtual community was there for me; all I had to do was ask. And of course a handful of people contacted me privately to ask what was up as well.

I understand that some people feel social media is taking something away from the way we interact with each other but I absolutely disagree. Facebook is a tool, and if you use it with the understanding that it will never replace real interactions, it has the potential to enhance your emotional life. Sure, there are times where I log on while I’m sitting in the waiting room at MGH only to see someone’s photos from say, Paris, and I may feel a momentary twinge of envy. But that’s life. Whether I see the photos or not, you’re in Paris, and I’m still in my waiting room. Get over it.

Mostly I think of Facebook as a big giant bulletin board–a place for sharing interesting things. But other times it functions more like a greeting card–short, sweet, silly and genuinely sincere. The like button is a wonderful way for someone to let you know (without any more effort than signing a card) that they are paying attention and that they, in some small but not insignificant way, care. And sometimes, that’s all I’m looking for–a reminder that I’m not so alone after all.

So a big xoxoxo to everyone who answered my request for assistance. You helped me more than you can know.

MGH Conference: Let’s Talk

Jau Gupta, Basem Gawish, Linnea Duff

Jay Gupta, Basem Gawish, Linnea Duff

It was a great day, with a large room at the Simches Research Center packed to the brim with survivors and caregivers. We all enjoyed a light breakfast, accompanied by guitarist Michael Caruso (Jazz for a Cure) and then after opening comments from Liz Brunner of WCBV NewsCenter 5, thoracic oncologist Dr. Lecia Sequist gave us a primer on the genetic underpinnings of cancer formation (abnormal DNA makes abnormal protein…etc, etc…) and then an overview of targeted therapies. It was fascinating and underscored my conviction that personalized medicine will soon render chemotherapy a thing of the past.

Next up was a panel composed of four patients as well as three caregivers from the Mass General Cancer Center Staff. This part of the program is always a crowd pleaser, as there is something both moving and inspirational about hearing patients talk about their own journeys. They each made wonderful contributions; I loved the comment about the gratitude felt each day simply for ‘being verticle’. And then the hilarious yet also poignant description of the ‘flossing enigma’—that moment, where you look at your situation (terminal) and wonder if you even need to continue flossing. This explanation was made in response to a question from the audience about making plans. After we all stopped laughing, the panelist went on to explain that yes, you do need to keep planning for the future. After all, he had already lived quite a few years past his original prognosis.

One of the panelists was a very young man, Basem Gawish. He articulated extraordinarily well the need to ‘split your soul from your body’ when feeling physically diminished by your disease and attendant treatment. He described lying in a hospital bed and yet running and leaping in his mind—just beautiful.

Next up was my dear friend Jay Gupta, from Yogacaps, Inc. He gave a brief oral history of yoga and then led the crowd through a series of moves that can be done in one’s chair. His wife Terry (also my dear friend and Jay’s partner in Yogacaps) helped him demonstrate and when Jay asked if I would too, I didn’t say no. First time for everything—I am generally a back of the room girl. Anyway, it was fun to have that vantage point, particularly when Jay got to the part where he had everyone flap their hands above their heads as if we were preparing to take flight—all those moving arms in the air provided an indelible image.

We then broke for a boxed lunch, which gave us a nice chant to chat (and to listen to more pleasing music compliments of Michael Caruso). After lunch we returned to our seats for one more presentation, as Susan Pollak, who is the president of The Institute for Meditation and Psychotherapy, led us through some mindfulness exercises. It was a gentle way to end the day.

So thank you to all those who made this conference possible, including Susan Zuker and the Conquer Cancer Coalition of Massachusetts, who provided generous funding. Until next year!

*The conference was videotaped and will be made available online.

Resolve

As far as New Years Resolutions go, number one is a given: I will survive.

However, it’s a bit solemn and I feel the need to inject some whimsy and wild impracticality as well. So, here we go:

In 2013 I also resolve to:

1. Ride an elephant

2. Travel to Iceland

3. Stargaze on a clear night in the desert

4. Attend an opera

5. Swim in a warm ocean (hello equator!)

And you? What are your intentions and/or planned adventures for 2013?

Hello new year!

Although 2012 had its beautiful moments, I am not sad to see it go. Time for a new year with fresh possibilities.

I’ve got some major catching up to do and plan to embark on some serious blogging in the days to come; maybe even a few twofers. But not before I start the year on a positive and hopeful note.

I urge each of you to go see Ang Lee’s new film Life of Pi. A fable like adventure story, which hews very closely to the novel by Yann Martel (winner of the Man Booker Prize), it features a scrappy young survivor named Pi and his antagonist/co-protagonist, a bengal tiger. The movie is lush and gorgeous, packed with magic realism. And don’t miss the chance to see it on the big screen, as everything about this film is larger than life.

It was snowing when we left the theatre after seeing Life of Pi, the streets icy and deserted. We stopped in a tiny chinese restaurant. At the conclusion of our meal we cracked open the fortune cookies and mine read:  “The only way to catch tiger cubs is to to go into the tiger’s den.

I’ve never before encountered a fortune cookie that mentioned tigers, and given the movie we’d just seen, it seemed strangely apt. And it certainly seemed that I’d somehow wondered into the tiger’s den. However, I do question the motivation behind catching a tiger cub–sounds a little nefarious.

Anyway, I never tire of scrappy tales of adventure and survival and Life of Pi was one of three films I saw (and enjoyed) in 2012 that fit this sub genre. The first of the other two was The Hunger Games, which introduced a complicated character named Katniss Everdeen. Inspired by a trio of young adult novels by Suzanne Collins (I loved the books), The Hunger Games is dark, violent and dystopian. However, it is ultimately a story, however stark, about survival. I found inspiration there.

Finally, if you didn’t see Beasts of The Southern Wild, a small independent film, do. An enchanting tale full of whimsy but also pathos, the character of Hushpuppy will stay with you forever. At one point Hushpuppy declares “I am the man!” and you know that she too, is ultimately a survivor.

In 2013 I wish you all this: may we have the strength to deal with what lies ahead.

As you face your challenges, live fully and without hesitation. Embrace each day, not as if it is your last, but as if it were your first.

L1020715

A gentleman known as stageIVsurvivor

This particular guest post is actually the distillation of a telephone conversation that I had with my friend known by our online community as stageIVsurvivor, but more informally as G. When I became part of the INSPIRE community four and a half years ago, G was already a well established member, and practically a legend.

Diagnosed on November 30th, 1999, G’s lung cancer had metastasized to his brain. Nonetheless, his oncologist was confident that his cancer could be cured and remarkably, after a combination of surgery, chemo and gamma knife, G has been out of treatment and cancer free since November of 2000.

Prior to his diagnosis of lung cancer, G smoked. And he still does.

I will be the first to admit that I have had some trouble with this fact, as it flies in the face of all reason. Forget stigma for a moment; it just seems like a good idea to stop smoking if you have lung cancer. However, I am also adamant that one of the best ways to combat stigma is for smokers and former smokers to stand tall and refuse to be bullied or shamed into believing that they somehow deserve a diagnosis of lung cancer. No one deserves this or any other disease, and I was pleased when G agreed to share his story.

After our conversation, I came away with a much greater understanding of who this complicated individual is. Certainly, as a long term survivor of stage IV lung cancer, he provides incredible inspiration. In our forum, he often injects a dose of humor. Occasionally he can come across as a real curmudgeon, and G and I have had a dust-up or two. However, if you were to ask many of those he has helped behind the scenes, they would describe a generous and caring individual.

I was curious as to why someone who had not been in treatment for 12 years would be drawn to a support group for lung cancer survivors.  “I’m just one of the very, very lucky ones…it is my responsibility to do what I can for other people.” G emphasizes that his continued “participation on Inspire is only to help those still suffering and their families“.

Crediting an amazing medical team for his successful treatment, G is on a personal crusade to educate others about the importance of “proper treatment, proper direction and proper insight“. He abhors complacency, and often urges patients to seek a second opinion.

As for his own unconventional approach to survival, G is blunt. First, about the fact that he initially faced his diagnosis with anything but optimism. “I was angry and had a horrible attitude“. Unfortunately, G also ended up addicted to pain medication, and at one point just wanted to give up. However, he experienced a moment of clarity, realizing that he ‘wasn’t dead yet‘. Even while “lamenting the fact that I wouldn’t be around to raise my sons” G acknowledged that he “wasn’t doing a good job then“. He went into rehab and beat his addiction to the pain meds.

And so why does G still smoke? Certainly, there was a sense of “the horses are already out of the barn“–the damage done. But it would seem that the real reason is that having beaten both drugs and alcohol (G acknowledges that he has an addictive personality), he has found nicotine that much more difficult to kick. He’s giving e-cigarettes a try, and if they don’t do the trick, he may try something like chantix. Of course, given his personal stuggle with addiction, he is leary of any chemical intervention.

At any rate, on November 30th, G will mark his 13th year of surviving stage IV lung cancer. He’s a very lucky man, and he knows it.

Seven

Seven years ago today, on a Thursday morning, I became a person with lung cancer.

For some reason, it is the moments leading up to the diagnosis that I recall most clearly. I’d been in the hospital for three days already, and my doctor at the time was stopping by before her regular appointments to discuss the biopsy results. We were waiting for my husband David, who was expected to join us but was running late. My doctor filled the awkward silence by describing either a story her daughter had written or a play she’d had a role in; I no longer remember which. The doctor talked at some length about a field of sunflowers, which was in some way central to the story or the play. “Sunflowers signify hope” she said.

I had spent the past fews day convincing myself that the mass in my lungs couldn’t possibly be lung cancer. I was only forty five, fit and had never smoked. People like me didn’t get lung cancer. So it never occurred to me that she was telling this story, not just to occupy time, but for my benefit. A blazing field of sunflowers would be the final image in my mind before the shock, fear and grief hit; the last thing I would recall before the world turned upside down was a symbol of hope.

It is a strange thing to commemorate; the day of diagnosis. But of course, what we are actually noting is our continued survival. Seven and counting.

Sixth anniversary

Six years this week, y’all. It was on April 5th, 2005, that a chest CT scan hinted that my unresolved pneumonia might in fact be a neoplasm. I didn’t actually know what a neoplasm was, and I certainly didn’t think there was even a remote possibility that as a nonsmoker I was a candidate for lung cancer.

Several days later a needle biopsy provided confirmation and I heard the unthinkable words “you have cancer”.

The rest is not quite history.

As someone who has never been NED (No Evidence of Disease), I would once again like to propose another acronym: NDY, or Not Dead Yet. There is, in my opinion, far too much emphasis placed on cure, life after cancer, and being a survivor. Many of us will never be able to speak of our cancer in the past tense, as we are instead been there, doing that.

Just as  cancer has invaded our bloodstream, it is also integrated into our daily lives. We are living with cancer.

Another way of looking  at it:  every day we do something death defying simply by surviving.

Six surprising, at times difficult, but absolutely wondrous years. And counting.