Category Archives: Advocacy

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:

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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.

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 🙂

Whoa

Has it really been more than a month since I’ve posted? It has indeed and what a month plus–lots of water roiling under that bridge.

So where to jump back in…perhaps with my last scan result, which I think I just sort of skipped over. Things look really, really good with the worrisome area in my right lung settling down; maybe even receding a little. I have scans again in five weeks and in the meantime I’m just going to keep busy with lots of positivity. To that end a friend of mine shared that he felt certain I was ‘healing’. It took me aback at first. I’m a truly optimistic person but the notion of healing just seemed over the top–that is, until I looked at that word in a holistic sense and then I realized he was absolutely right. Between mind, body and soul I am feeling extraordinarily healthy–maybe even the best ever (and I’m sure tomorrow will top today).

I’ve had a couple of truly meaningful adventures (all three thanks to LUNGevity) since I last posted. On October 21st I had the privilege of attending LUNGevity’s 2016 Science Meeting; an annual event where grantees (a big part of LUNGevity’s mission is funding medical research in lung cancer) in the areas of Career Development, Early Detection and Targeted Therapeutics gave five minute presentations in addition to a poster session about the progress they are making. It was sort of like a mini ASCO up close and personal but focusing exclusively on lung cancer.

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And then on November 9th I traveled to NYC for LUNGevity’s Celebration of Hope, their annual gala held at the beautiful Mandarin Oriental. It was an incredibly special night all the way around. Andrea Ferris, Linda Pressman Wegner, Dr. Upal Basu Roy and the rest of the LUNGevity staff feel like part of my extended family now and it is always fun and inspiring to spend time with them. My dear friend Melinda Lee was my date for the night and Rob Densen and his daughter Arielle, fabulous friends of mine that I see too seldom, joined us. And of course, some of my fellow survivor/advocates/friends were also in attendance–Alisa, Dolio, Amanda. Always good to hang with them.

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I suppose I would be remiss if I failed to mentioned that I was honored that evening with the Survivor Face of Hope Award. I should also add that this meant the world to me, coming from an organization that I have so much respect for. And although some in attendance hoped I’d give a speech without notes (think HOPE Summit 2016) I stuck to the script–I absolutely cannot be trusted to be spontaneous, for a whole variety of reasons.

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Photo by Alisa Kaye Brenes

Well, I’d barely gotten my bags unpacked when it was time to leave for Indianapolis and a tour of the Lilly Labs. My inner geek was thrilled–interacting with members of the Lilly team and a few cancer cells as well–viewed at a safe distance through the microscope. And of course, I also got to spend some quality time with my fellow advocates. Never a dull moment!

Matt, Katie, Linne, Melissa and Kelly.

Matt, Katie, Linnea, Melissa and Kelly.