The pass it on power of media

Those of us who are ALK+ (alkies) have a Facebook group (ALK-I.E.S. Worldwide–it is a closed group–limited to those who are ALK+, message the moderator for permission to join) started by Tom Carroll and his wife Merita (Merita is the patient/mutant). This group operates as both a forum and a source of support, and has a growing membership of ALK+ patients and their caregivers which is worldwide.

Earlier today one of the members asked for the link to a story I appeared in some eight years ago, on June 2, 2009. They were inquiring as they’d been introduced to Bill Schuette, another ALK+ patient, and he had referenced this particular news story while talking about his own cancer journey.

I found the link, which was kind of fun as I had not watched it in years. More fun still, in the ensuing online conversation we learned that Bill provided essential information to another alkie, Catherine, who in turn helped Jeff, also ALK+. Bill himself joined our conversation and provided a link to a video he made at MGH. Watched in conjunction, our two videos are such a splendid example of how media has the (exponential) potential to help someone else. And social media serves the same purpose–as we make connections and share information and resources.

Linnea and Bill. Connected 🙂

 

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

 

 

Friend and hero both

Tom Marsilje is an extraordinary human being. He also happens to be on the short list of those who have made it possible for me to extend my stay on earth. Tom codeveloped ceritinib, the first second generation ALK inhibitor, which became available in clinical trial in 2011.

Ceritinib (Zykadia) was my stepping stone after coming to the end of my three year run on crizotinib (Xalkori). Without it I would have had nowhere else to go, treatment wise. My gratitude to Tom is without bounds.

What I could not have predicted is that Tom and I would eventually become friends. This happened after his own diagnosis with stage IV colon cancer. Suddenly I had something to offer my savior, in the way of initial inspiration.

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Two miracles of science

However, Tom has forged his own amazing path as a patient and super advocate. The father of two young daughters, his will to live is fierce and he has deftly utilized his experience as a scientist to design his own treatment path in a way that few are able. However, he has not focused solely on his own survival, as he has shared both his experience and his knowledge in a blog, Adventures in Living Terminally Optimistically as well as a column written for the Philadelphia Enquirer. Tom’s primary passion has been to make clinical trial information available to colon cancer patients in a format that is expedient, accessible and easily understood, and with the support of Fight Colorectal Cancer and Flatiron Health he has developed an app to help late stage colorectal patients locate clinical trials.

All of this while moving from treatment to treatment, as well as devoting precious time to fatherhood. Honestly, I have no idea how he does it.

The San Diego Tribune just ran a lovely piece on my friend Tom Marsilje with an accompanying video. I was touched to see that our friendship got a mention–I am the ‘woman with stage IV cancer who has now participated in three life-extending trials.’ What is not said is that Tom made trial number two possible.

We have a pretty special bond, me and Mr. Marsilje. I am endlessly grateful, constantly in awe, but also quite mindful of the difficult path he is on as he battles his own disease. Keep him in your thoughts.

Not the usual suspect

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The view out my window

Since moving to Lowell I have been taken for an undercover cop (two occasions), a prostitute and now, perhaps, a suspect. Maybe I missed my calling and should have been an actor.

About those cases of mistaken identity. I spend a lot of time traipsing around, my chief form of local transportation and exercise as well. I walk alone–well, I did, prior to Kumo coming into my life. And I am a woman–a woman walking alone in my neighborhood is less common.

The first time I was mistaken for an undercover cop, I was moving fast but also stopping occasionally to take pictures with my cell phone–all for art. However, that’s likely not how it appeared to the group assembled on a front porch nearby. As I passed, one young man stood up and aggressively greeted me; ‘Hello Officer.’ I kept walking but was so caught off guard that I turned to him and said ‘Who do you think I am?’ At which point one of his companions, a woman, yelled back ‘You know you are!’

I was both confused and somewhat shaken–obviously being mistaken for a cop was not something that commanded either affection or respect. When I got home I googled ‘what does an undercover cop look like’ and was surprised to see that I fit the description perfectly. Tall, fit, hair cut short. Wearing jeans, t-shirt, athletic shoes. Yep, that was me.

The second time it was just a bunch of kids smoking weed and I think I simply glanced a little too long in their general direction.

And as for the prostitute–I was coming home from Boston one night on the train and got in well after dark. I wore a summer dress as I walked home from the station–alone. I was waiting for the light to change on Lord Overpass and an older guy in a car slowed way down, leaned out his window and said something that made it clear he thought I was soliciting. Well now.

But yesterday took the cake. Two days ago a woman was murdered several blocks from where I live and her suspected killer, who had previously served time for slitting another woman’s throat, has not been apprehended. A couple of helicopters had been hovering overhead for thirty-six hours, presumably part of the search. I took Kumo out for his afternoon walk and as we headed downtown, almost two dozen squad cars, marked and unmarked, went whizzing by–sirens wailing. I thought perhaps the manhunt was coming to a conclusion.

As we circled back to our neighborhood, I saw that there were now five helicopters. A block from home I took out my phone to video this crazy scene and had the distinct feeling that I was being watched. I looked up and one of the helicopters was hovering directly above me, where it stayed for some time. What the hell, I thought.

Finally it moved on and when I got home I opened an email from one of my neighbors with a description of the suspect. Male, with my coloring, neck tattoos, 5’10” tall and wearing jeans, a blue zippered hoody, and black and white tennis shoes. Wrong sex, same height, but damned if I wasn’t wearing exactly the same clothing.

I have to imagine that up there in those police helicopters, they have some sort of way of estimating height but probably also a facial recognition system, which would have quickly let me off the hook. However, sometimes it’s all just a little too close for comfort.

Each of these instances is also an interesting commentary on the assumptions we make about each other based strictly on appearances–how extraordinarily off base those assumptions can be. In my case, I am who I am. Someone who is both less healthy than she looks and more healthy than her diagnosis would suggest. Strong enough to be out and about and even mistaken for those in wildly different walks of life. So much more than just a lung cancer patient 🙂

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.

Twelve. And counting.

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Twelve years ago today I was forty five years old, my youngest child was seven and I was sitting in a hospital bed. I’d been admitted four days earlier after several weeks of antibiotics for a walking pneumonia that just wouldn’t clear up. A CT scan the previous Monday had revealed a large mass in the lower lobe of my left lung and the differential diagnosis was recalcitrant pneumonia, fungal infection or a neoplasm.

I didn’t know what a neoplasm was but my husband’s face had fallen when my general practitioner spoke that word. After she left the room he explained that it was another word for cancer. We’d then driven directly to the local hospital where I was placed on IV antibiotics.

Those first days were awful. I was in a room with three other woman, one of whom was dying and another who’d had a severe asthma attack. As I lay in bed I worked incessantly on my laptop researching everything I could about lung cancer. One thing stood out–the dismal five year survival statistics–15%.

The day of my biopsy the patient before me was a prisoner, handcuffed to his wheelchair and accompanied by two officers. When my turn came the surgeon performing the procedure told me that it was highly unlikely that I, a young never smoker, would have lung cancer and that what he was seeing on the CT scanner looked like a fungal infection.

After the biopsy I had to lay very still for several hours without speaking so as to minimize the chances of a pneumothorax. This was difficult as one of the attendants was someone I casually knew, and she kept asking me questions. My lung did partially collapse, as it now has every single time I’ve had a biopsy.

On Thursday morning my doctor came to my room first thing. My husband hadn’t arrived yet and she stalled, telling me a protracted story about her daughter and some dramatic production that featured a field of sunflowers. She said “You know, a sunflower represents hope.”

When my husband entered the room my doctor got right to the point. “I’m sorry but you have lung cancer.”

I really don’t remember anything she said after that as both my vision and my hearing seemed to have suddenly constricted. I had this sensation that I was in an airplane and it was going down. My husband would end up having to call my family members–I was simply too devastated to speak to anyone.

However something incredibly fortunate happened later that day, something that changed everything.

I was assigned an oncologist, who spoke to me only briefly. That evening my husband called him with a question and this oncologist was incredibly rude. We decided that he was not someone to whom I would like to trust my care. And so my husband immediately called one of my dearest friends, whose husband was a surgeon, asking for their opinion as to a good doctor.

Her husband had done his residency at Massachusetts General Hospital, and he gave us the name of the thoracic surgeon he had worked under. And that is how I ended up at a major research center rather than a local hospital. Because of one rude oncologist. To whom I actually now owe a thank you.

#twelve&counting

Losing it

Earlier this week I made my morning cup of coffee immediately upon rising, just as I always do. But then I couldn’t find it. Anywhere. And I live in a one room loft. I also left my eyeglasses at a local restaurant over the weekend and as their staff’s search turned up nothing, I’m going to have to buy a new pair. Yesterday I misplaced the bra I was planning on wearing. I later found it in a bowl of oranges. Don’t ask, as I couldn’t answer, because I simply do not know.

Sometimes it’s funny, other times it’s frustrating as hell.

All these years of clinical trials and continuous treatment are catching up to me. Add in menopause and advancing age as well as the fact that I live alone, in itself a rather extraordinary thing for a person dealing with a terminal illness.

Yet there is an upside. I am now convinced that children have incredibly short attention spans by design (so to speak). That if they were able to mull, ponder and plan the way adults do, they might well waste the precious time allotted to childhood. There is a magnificent advantage to a wandering perspective–so incredibly well suited to experiencing the world with eyes wide open and without bias.

With my limited ability to recall, I am rather like a child. Everything feels fresh and seemingly brand new. My focus is short, but also incredibly intense. At times it as if I am tripping, my senses tickled by any stimulus at all. As an artist, this is a boon. Emotionally, it can also be of enormous benefit, as I am no longer prone to extensive rumination; once upon a time, losing my (beautiful and expensive) blue eyeglasses would have undone me, at least for a time. I regret their loss, but in the same way a child mourns a broken toy–briefly.

It is only when I need to function as an adult; someone with responsibilities and hard deadlines, that this lack of linear concentration becomes a true liability. I would in fact consider it almost a disability, although one that is neither obvious nor fully understood by those around me. I believe that might be because my cognitive challenges don’t reflect diminished intellect but rather the increasing inability to retain, recollect and organize information.

I could use some help–some sort of cheery task master. Someone who would commit to a couple of hours each week to assist me with those chores I now find so daunting (paying bills, taxes, getting my vintage clothing business up and running, managing my finances).

I already devote well over a third of my income to health care and I think a personal assistant is likely a luxury above my means. However, I would like to propose that there should be some sort of federal agency (yes, I’m dreaming) akin to the U.S. Department of Veterans Affairs for clinical trial participants. That there be recognition (on the federal level) that in the war on cancer, clinical trial participants are serving on the front line. And that we, like veterans of other wars, deserve some sort of special consideration of both what has been given but also taken. Financially, emotionally, physically.

I’m committed to continuing to fight the good fight–and I do so gladly. With or without assistance. However, if anybody out there with mad organizational skills and a little spare time wants to come hang out, coffee’s included.

*if I can find it 🙂