It’s time.

On August 10th our acting president declared the opioid crisis a national emergency (I feel the need to qualify his title—I simply cannot bring myself to write those words: ‘President Trump’). While not denying that opioids are a pressing problem–Kumo and I regularly skirt discarded needles on our walkabouts–I also feel that there are more obvious emergencies. Like lung cancer, which takes the lives of almost 160,000 American citizens annually.
According to this eye opening page of lung cancer statistics provided by the Bonnie J. Addario Foundation, lung cancer kills an average of 433 people a day in the U.S. That’s one person every 3.3 minutes.
Not to mince words, but lung cancer is a fucking disaster. A crisis of immense proportions, a holocaust, a catastrophe, a cataclysm. If this many people died from any other cause, our nation would be in an uproar and the media would be all over it.
But instead, lung cancer is the big assed elephant in the room. A silent killer, easy to ignore and then readily dismiss. An unsexy disease of smokers and old people. Only, it’s not. I don’t know how many times we have to say it, but ANYONE can get lung cancer.

The single biggest risk factor for lung cancer is BREATHING. Approximately 15-20% of those newly diagnosed have never smoked, and that percentage is significantly higher in women. Young, vibrant women like Kimberly Statham Ringen, Molly Golbon and Elizabeth Dessureault; each taken far too soon by this dreadful disease.
In truth, there’s nothing quiet about lung cancer. Up close and personal, it roars like the beast it is. A flipping deadly beast. So where is the outrage? Why has our nation (and the world) not united together to stop this serial killer?

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Consider this. If lung cancer were declared a national emergency, all this would be possible (quoted directly from an NPR article regarding Trump’s designation of the opiod crisis as one):

 

1. FEMA money could be available to states.

The president could use authority under the Stafford Act to declare an emergency. That would open up resources that are usually reserved for natural disasters like hurricanes or floods, including FEMA’s disaster relief fund, which had about $1.5 billion available as of July.

2. Public health workers could be redeployed.

The president could ask HHS Secretary Price to declare an emergency under the Public Health Service Act. Unlike FEMA, HHS doesn’t have a standing emergency fund (although during last year’s Zika virus scare, many people urged that one be established), but money could be freed up. Right now, public health workers and researchers are working on projects defined by grants from HHS. If Price were to declare an emergency, those workers could be redeployed temporarily, from working on AIDS outreach for example, to work on substance abuse issues.

3. Access to medication-assisted treatment could get a boost.

In a public health emergency, the HHS secretary could make it easier to get medications to counter addiction. For example, Price could allow “standing orders” for the drug naloxone, used to reverse overdoses, which would allow certain populations to get the medication without a prescription. He could also waive the restrictions on doctors who want to administer methadone or buprenorphine to patients with opioid addictions. Those medications currently require a prescribing doctor to have special certification, and there are limits to the number of people doctors can treat.

4. Medicaid could pay for more treatment.

A public health emergency would also allow HHS to waive certain regulations. One major target could be a rule that restricts where Medicaid patients can get inpatient drug treatment. If HHS waived that rule, then Medicaid beneficiaries might find it easier to get treatment.

5. Congress could appropriate money.

Congress doesn’t need an emergency declaration to appropriate money for more drug treatment and intervention. But if the Trump administration were to issue such an order, it would put a lot of pressure on Congress to back it up with money. Last year, lawmakers passed a law to address addiction issues but refused to include $1.1 billion that President Barack Obama requested to expand treatment programs.

6. States could request aid.

Six states have already declared opioid emergencies. A federal emergency could open up paths for those states to request federal grants for specific purposes. Maryland, for example, has a tool that tracks overdoses in real time so emergency responders can identify where particularly potent synthetic opioids may be on the streets. Federal money could potentially allow other states to follow suit.

 

The reality is that lung cancer is unlikely to be declared a national emergency. However, by demanding that it be named one, we have the opportunity to put lung cancer in the national spotlight.

Me? I’m long on ideas but often short on carry-thru. Fortunately, some of my peers excel in those very areas in which I lack. While riding my initial wave of enthusiasm I reached out to Deana Hendrickson and Laura Greco, both of whom had already been making some noise about making some noise. We agreed to join our efforts into an actual nascent organization; an advocacy group designed by advocates for advocates. We’re calling it LAB, an acronym for Life and Breath.

Our lofty goal is to shake up the way advocacy for our disease is done. We’ll go after that declaration but we’re also working on some fresh ways to engage and possibly enrage as well. What we will not do is to go quietly into that good night.

So please join us at our first public event on November 2nd in Washington D.C. And stay tuned. We’re just getting started.

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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

Couldn’t

I just missed World Lung Cancer Day. Well, not quite. I did spit out this tweet:

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For those who were able to post something inspirational, I have nothing but respect. But I just found myself unable to embrace the concept of a day devoted to lung cancer.

That’s because for those of us living with this disease, every single day is lung cancer day. And every single one of those days, we wish it wasn’t.

If we’re not dying, our friends are. This disease is a holocaust, a catastrophe, a fucking disaster. And although there is nothing wrong with ‘raising awareness’, we absolutely cannot stop there.

As important as it is to inspire, it is also necessary to incite. Complacency equals complicity, folks. And if we are going to inspire anything, it should be a sense of urgency. And raising awareness? Let’s put the money where our mouths are and raise funds; moneys for lung cancer research. How about devoting November to one giant bake sale? Or a virtual bake sale, with a go-fund campaign devoted to lung cancer. Let’s make our goal a million dollars. I mean, why not?

A cookie for a cure. Let’s do it.

On Privilege

My morning ritual now is to roll out of bed, release Kumo from his crate for a brief hug and scuffle, pull on yesterday’s clothes, grab leash, keys and sunglasses before heading out the door for an hour-long walk with a little white dog at my side.

We have become a bit of a fixture in this neighborhood and it is no longer unusual to have people wave or offer a greeting. On this particular morning we saw a young woman jogging and I thought to myself that the U Mass students must be returning. Later, as we crossed a bridge, we moved over to let a young man on a bicycle pass. He too appeared to be a student–nice bike, preppy clothes, trim hair and eyeglasses, smelling freshly scrubbed as he rode by.

As pedestrians, we had the actual right of way on the sidewalk and yet it is my practice to move over for cyclists, a gesture which is almost always acknowledged with a smile or a thank you.

However, this young man, who looked the very epitome of privilege, did not appear to notice the woman and her dog (us), scrunched against a traffic barrier so that he could pass without dismounting. This irritated me–in a way that it would not have had he not possessed the air of privilege. I berated myself for feeling judgmental–perhaps the young man was simply shy and lacking in social graces.

However, it got me thinking.

One of the privileges of privilege is a special set of blinders; if you are privileged, you are also unaware of your privilege because it is something you take for granted.

Privilege is autonomic–like breathing, or the beating of your heart. If you are privileged, you don’t give it much thought–again, the privilege of privilege.

Of course, there are so many layers to privilege, something I was reminded of when we walked by a group of construction workers and one of them laughed in a lascivious way. It is a laugh I am all too familiar with–one that connotes a very different sort of privilege.

I gave this more thought. What a privilege it once was to lie on the beach rather than in a CT scanner. And what a privilege it is to lie in a CT scanner rather than on a table in a morgue.

It’s all relative, privilege.

 

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.

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

*thinking of you, Kimberly.