Category Archives: Advocacy

I don’t have to tell you how I feel about this…

Now this is compensation. Not mine, his.

But I will. Ludicrous and, frankly, almost criminal. First of all, no one needs an annual salary of $27.9 million. What on earth would you even spend that much money on? Purchase your own country?

Secondly, I take this over the top salary personally. I can’t help but feel that my individual contribution (over seven years of my life spent as an early participant in two phase one clinical trials for Pfizer) helped feather this fellow’s fine nest. 

It is as if I am the serf and this is my lord. Clinical trials as a feudal system? Not so far off the mark, yet oddly out of place and time in this modern day democracy in which we now (co)exist. 

However, I have an idea. Ian C. Read could decide to share some of that massive salary, just as I have so generously shared the fruits of my labor (not to mention a whole lot of plasma). 

And he could start by taking care of my parking fees.

Every breath we take

November is national lung cancer awareness month, thirty days devoted to increasing public perception of our shitty disease. And for those who are counting, breast cancer, in October, gets thirty-one.

But then, seriously, WTF with these days and these months? Does anybody really believe that white ribboned apparel is flying off the shelves? And even if it is, that it truly makes a difference to anybody but the t-shirt vendor?

I guess 160,000 people dying annually isn’t attention grabbing enough.

You know how many lung cancer months I have personally observed? 163, the number of Jan/Feb/Mar etc… since my own diagnosis with lung cancer. I, like most people, never gave lung cancer a thought until it smacked me hard upside the head.

Therein lies the problem. How do we entice others to care about something that seemingly has no impact on their own lives?

I understand that a day and a month devoted to lung cancer awareness is well intended. But to me, an increasingly cranky iconoclast, it actually trivializes my experience.

What I want (and no, I don’t believe it is too much to ask) is for people to be aware of lung cancer every single day and month. To understand that not only is it important to care about those who have already been diagnosed, it is also critical that we all start thinking about the air we breathe. Because that, my friends, is the one thing that all of us with lung cancer share. We inhaled–exposing the tissue in our lungs to harmful particulates and carcinogens in the atmosphere surrounding us. 960 times an hour, with the average person taking between 17,280 and 23,040 breaths daily.

So yes, awareness of lung cancer should be as secondary to daily living as breathing in and out. Because baby, that’s risky business. If you’ve got lungs, you can get lung cancer.

And that’s enough to make a person care.

Don’t call me partner

Warning: this may be the most contentious blog I’ve ever written.

That is because I am about to desecrate a sacred cow–the idea of patient as a partner in medical research. Lovely in notion, the reality is something quite different and nowhere has that been more clear to me than sitting in the audience at DPharm 2018.

Let’s start with the straightforward definition of partner:

And then let’s parse that definition, piece by piece. A person who takes part in an undertaking with another or others. I have no quibble with this. As a participant (I refuse to call myself a volunteer—I did not ‘volunteer’ for this shit) in a clinical trial, I am a member of a ‘team’ composed of researchers, other participants, clinicians, schedulers, nurses, sponsor, phlebotomists, techs, lead investigator, regulators; even payers.

Every member of this team has an important role to play and, as the term stakeholders implies, to a certain degree the outcome of our endeavor will impact each of us personally.

However, this is where the concept of partner starts to fall apart; shared risks and profits.

No one has more on the line than the participant. The skin in the game is not figurative for us, it’s our actual tissue. Best case scenario: we get to continue living. Worst case scenario: we die. Those are some pretty bloody high stakes and not in the same category as fourth quarter losses.

And now we get to the word profit. Don’t even get me started. I pay for the privilege of participation. Clinical trials are not gratis. The experimental agent/therapy is provided to me free of charge and sometimes certain labs or procedures; in the trial I am currently enrolled in echocardiograms are covered by the sponsor. However, everything else is billed to insurance, and I am responsible for deductibles and copays. Gas, parking, lunch—all paid for by me.

And then there is the physical toll. One hundred and one chest CT scans, 60 abdominal CT scans, 42 brain MRI’s.

So, let’s just get really real here and stop the pretense. I am not your partner and if I am, this is one heck of an abusive relationship. One in which I am bound to you by desperation, you call all the shots, and my only true power is to withhold. Where words like compliant and noncompliant are used to describe me. One in which your need for data is greater than my need for autonomy/personal safety. Sure, you keep me alive but you can also kick me to the curb if my cancer gets out of line again. And when and if you do, there will be nowhere else for me to turn.

We are codependent, you and I. That much is true. But we are not equals and certainly not partners. And we won’t be until you recognize that I am a human being. That I have hopes and dreams and family too. It is my bad luck that I also have cancer. I want to live and I will do almost anything to stay alive. You know that. But don’t exploit it. Do not continually ask me for more blood, more sweat, more tears, more money.

Instead, provide me with genuine support. Understand what I have sacrificed and compensate me for my time, just as you compensate healthy ‘volunteers’ in clinical trials. Being a subject in a trial does not mean that I am also subhuman so treat me with the respect that I deserve. Let’s ditch the condescension and start with transparency. Stop pretending that I am your partner. I know what a true partnership looks/feels like, and baby, we’re not there yet.

Word.

American Cancer Society, we need to talk.

You, with the snappy first-in-the-phone-book name, American Cancer Society. The organization that I first turned to when I was diagnosed with lung cancer in 2005, because, as far as I knew back then, you were it.

The only game in town.

However, you disappointed. Nada, in the way of advocacy/assurance/assistance. Unless, of course, I wanted to stop smoking. Which I didn’t, as I’d never smoked in the first place.

Eventually you got on board. Sorta. You just couldn’t let go of that smoking/lung cancer connection. Perhaps it was contrition–making up for your past sins, like this article that appeared in The Atlantic in January of 1956, in which Dr. Charles S. Cameron, then Medical and Scientific Director of the Society states: ‘It does not hold that smoking causes cancer of the lung. It does not propose to tell the public not to smoke.’

Now you just can’t seem to talk about anything but smoking and whether or not it is your intention, the American Cancer Society’s obsession with the tobacco/lung cancer connection–which ignores the fact that roughly 80% of those newly diagnosed with lung cancer are either former or never smokers–adds constant fuel to the perpetual stigma fire.

You just came out with a survey in which you ask people what they care most about when it comes to cancer and though you make references (twice–each) to both tobacco and smoking you never mention lung cancer. Even though it is the Number One Cancer Killer in the US, according to the Lung Cancer Foundation of America, killing more than breast, prostate and colorectal cancers, combined, every year’.

 

So what I’d like to know is why is it that you can talk until you are blue in the face (been there, done that–shortness of breath is a common side effect of LUNG CANCER) about TOBACCO and SMOKING and yet you can’t come clean about the fact that LUNG CANCER is something that can happen to ANYONE. That really, all you need are lungs. And that the NUMBER ONE CANCER KILLER IN THE USA AND THE WORLD should be declared a national priority as well as a FUCKING EMERGENCY.

Just saying.

This life of mine

I woke up in a hotel bed in Vegas this morning. Work, not play as I am here on behalf of Pfizer to speak on a panel. However, any morning I can sleep in feels a lot like vacation.

The highs and the lows. I rode to the airport yesterday via Uber and I actually wasn’t quite sure I’d make it. My driver was a recent immigrant and possibly yet unfamiliar with the rules of the road. At least, that’s what I said to myself as he cut across four lanes to take an exit after veering off course for the second time. Fortunately the flight was uneventful and I was picked up by a shiny black SUV at the airport.

Poser. I didn’t actually drink/eat all of that 😉

This is the third time I’ve travelled in the past month as a friend donated miles to get me to Louisville for the first annual ALKpositive summit. It was meaningful to meet many of my fellow mutants and their families and I had a blast. I flew from there to St. Louis—via Chicago, even though it would have been a two hour drive. Not my dime or my itinerary, but in the end, certainly my pleasure as I got to spend several days with members of my Fresh Chapter tribe in meetings at Eli Lilly (an important sponsor of A Fresh Chapter).

Hugging my man Scott after our interview.

We crammed a whole lot of connecting into a little less than three days but it felt as if we were just getting started. And as glad as we were to be together, each of us felt the absence of the other members of our tribe. By the time we reprised our group hug at the end, I was feeling mighty emotional. In the best of all possible ways. You just can’t go through an intense experience like volunteering in Peru without developing some extraordinary bonds.

All of this diversion has been a good thing as I’m having a moment.

Three months ago I took myself off of Prozac, the antidepressant I started taking not long after my diagnosis with lung cancer. Prozac is highly effective for me and I tolerate it well, although it is not without side effects, including reduced libido. On three occasions I have taken myself off of it and each time shit has hit the emotional fan. My experience this time was no different, as I was slammed with the double whammy of losing my insurance and a bad breakup.

My insurance was restored but my confidence, not so much. Although there is no question I am better off without the relationship, I am feeling wary–sort of a persistent, creeping anxiety. I am certain that shall soon pass and in the meantime I am healing my heart in the best way I know how; loving on my friends, my children, and my little white dog.

Oh yeah, and Prozac. As much as I like the idea of being off an antidepressant, I am better on. And better is definitely the look I’m going for 😉

O yeah

So I suppose I’d be remiss not to mention that Alice (Dr. Shaw) and Linnea (moi) are featured in an article in the March 2018 issue of O, The Oprah Magazine.

It’s a solid to have the subject of lung cancer receiving notice in a major publication such as O, so thank you Ms. Winfrey 🙂

And for those of you without access to the print magazine, O has put the article up online as well: Thanks to New Science, Lung Cancer Patients Are Living Longer Than Ever.

I’d also like to express my gratitude to the author of the article, Leslie Goldman.

Couldn’t

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

Screen Shot 2017-08-02 at 2.00.19 PM

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.