Monthly Archives: March 2019

Throwing shade

Posted on March 29, 2019 | 3 comments

“Just go away, you sticky little bastards.“

I talk to my cancer, and that was this morning’s heartfelt greeting.

Yes. After years of hardcore warfare, my body the battle ground, I’m trying another approach.

Not a surrender, not a truce, but rather one in which I attempt to understand where the enemy (that would be cancer) is coming from. Not go high, go low.

It’s such a bizarre concept, my own cells run amuck. Unlike a virus, which can jump hosts, when I die, my cancer dies. Lose lose. Total annihilation.

Of course, it’s wrong to assume that this is not an end unto itself; The End. I mean, we all know this planet’s getting crowded. Of course, in this particular case, it sucks to be part of the solution.

I also think that part of the genius of DNA is the possibility for error. A consistent state of stasis is one big drag. Given the rate at which DNA replicates, errors of transcription offer fresh possibilities. Mutations allow life to evolve but they certainly can wreak havoc on an individual organism.

Which brings me back to my morning conversation. At this point I am at some sort of personal ground zero. Not emotionally (I am fine, really fine) but rather at a loss per how to address these errant cells of mine.

As captain of this ship, I can’t help but feel that a mutiny is under way. “If my body goes under, you go with it.” I tell these rogue cells. “Your ways are self serving and short sided. By gobbling up everything, you shall kill us all.”

Of course I see the parallels—what we humans are doing to the earth is not so very different than what my cancer is doing to me.

“What’s the point?” I say. “Why can’t we all live in harmony?”

These little bedside chats are my attempt to stay reasonable. But cancer is beyond reason. If I am to survive, I’m gonna have to fight–probably dirty.

“Hey cancer, nobody likes you.”

Cancer, well, cancer don’t care. And that’s the flipping problem.

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Out LIVING. Loudly so.

Posted on March 27, 2019 | 7 comments

Yes, I love that double entendre. And it is my intention to outLIVE as well.

But sometimes a girl just has to play. Therefore, my recent trip to Philadelphia started a few days prior to the conference. Four, to be exact.

My friend Rufiya picked me up at the airport on Thursday. We went straight to a farm to table restaurant followed by a trip to the Philadelphia Distillery (home of Bluecoat Gin) where the bartender regaled us (an effort I heartily supported) and then on to an evening with Michelle Wolf, the comedian who raised more than a few eyebrows at the 2018 White House Correspondent’s Dinner.

The next day Rufiya dropped me off at Princeton University and I perused their excellent art collection before spending a pleasurable hour in the amazing Labyrinth bookstore. After dinner Rufiya and I took a detour to Robbinsville New Jersey to visit a Hindu temple complex, the Swaminarayan Akshardham.

When you first drive up to this mammoth structure it looks almost as if you are at a high end mall or in Las Vegas (that’s from the parking lot). As you approach the entrance you begin to notice the intricate carvings in gorgeous Carrara marble. Once inside women and girls are ushered to the left, men and boys to the right. Shoes are removed and if a woman is dressed ‘immodestly’, a Sari is provided. The marble floor has radiant heat (cooled in the summer, we were told) which makes the entire experience more sensual.

It was our excellent fortune to arrive just before the ceremony where the gods are fed and we were graciously invited to participate. We were allowed to enter the heart of the temple where we took a seat on the floor facing the elaborately dressed gods. It is very traditional–with males in the front and females in the back. Chanting, incense, priests in orange robes. At the conclusion of the ceremony we were encouraged to join in another ritual, where you go to a special room, cleanse your hands and then are handed a shiny metal bowl filled with hot water. You take this bowl to a statue of a god, make a wish, and pour the water over the god. The entire experience was both highly spiritual and incredibly magical.

Rufiya, the consummate hostess, had something special planned for Saturday morning as well and we were up at the crack of dawn and headed north to the King Spa and Sauna in Palisades Park. Mind blown.

I will try to describe.

After entering you are handed a bracelet (for charging food and services) and your uniform. For women it was baggy pink shorts and a t-shirt, a washcloth and a little pink cotton cap. The spa is huge—IKEA sized with multiple levels. The dry section (hot saunas) is unisex and consists of various rooms, igloos from sort-of-hot to so-very-hot-you-need-to-wrap-yourself-in-a-tarp-hot before entering (the one room we passed on). You lie on the floor in the igloos on tatami mats with your neck supported by a wooden pillow. Each igloo is lined with various minerals and crystals or salt and has bags of herbs suspended from the beams. Aromatic, hot and fantastic!

Mixed in with the igloos are sleeping rooms with either tatami mats or recliners (the spa is open 24 hours a day)–and there are also spaces with laptops and televisions. Onsite manicure or pedicure is an option. And a restaurant with ornately carved chairs upholstered in pink leather. We started our day with ginger tea and brown eggs that had been cooked in the hottest igloo (!). Lunch was traditional Korean fare–phenomenal kimchee. After that we were ready for the wet room.

This is the moment that you leave your inhibitions behind. Although segregated by gender, everyone is nude. There are both hot and cold soaking pools, showers, and a steam sauna. The room is very noisy and lined with multiple tiled stations equipped with handheld sprayers. Each station has an overturned bucket and women sit on top of these to scrub and bathe. I’m not sure I’ve ever seen so much running water. Along the back wall is a row of tables covered in pink vinyl, and this is where the wet and dry massages take place.

Rufiya opted for a wet massage, which is basically an hour and a half long exfoliation. I, not quite so brave, went for the dry.

When it was my turn, a very short Korean woman dressed in black bra and panties came and took me by the hand and lead me to her table. Then she slathered my skin in oil, wrapped me in steaming hot towels, and applied a mask to my face made from freshly mashed cucumber. She spoke no English but sang softly in Korean as she worked. At one point she pounded (gently) her fists on my forehead; at another juncture she suddenly threw my arms off the table. After forty minutes she motioned for me to turn over onto my stomach. I opened my eyes to peer around and realized she had crawled on top of the table and was straddling my back (‘riding me like a horse’, is the way I described it to one friend ;). At the end of the massage she washed and conditioned my hair, sat me back up, slapped me on the back and said ‘You good.’ It was all so very odd and so wonderful as well.

But my friend Rufiya wasn’t finished with me yet. Nope. I did this. Billed innocuously as a mugwort bath, I had no idea what I was getting into. It was…really odd but, I guess, an experience. I’d advise passing on the mugwort and just getting more food in the restaurant. BTW, if you are interesting in giving King Spa and Sauna a try, check out Groupon for a steep discount.

I fell asleep in the car on the way home–turns out all that spa-ing is exhausting. But the next morning Rufiya dropped me off in Philadelphia in preparation for the conference and I hit both The Barnes Foundation and the Philadelphia Museum of Art. Four action packed days of plain old FUN.

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Clinical Trials Transformation Initiative

Posted on March 26, 2019 | 1 comment

Every once in a blue moon I have the opportunity to participate in a project that feels truly substantive. Transformational, even. Last week I was in Silver Springs, Maryland serving on a panel at a workshop that was a collaboration between CTTI (Clinical Trials Transformation Initiative) and the FDA (Food and Drug Administration).

The last supper? Hopefully one of many.

It was a full day of intelligent dialogue about the actual patient experience per clinical trials. Barriers, burdens, successes, failures. With a clear focus on ways of doing better.

Cary Medosch, Bray Patrick-Lake, Linnea Olson 🙂

I am grateful to Duke, CTTI and the FDA for the opportunity to have this conversation. I left feeling very hopeful. For those of you who are curious as to what transpired, the workshop was recorded and you can view the video by following this link. My session was the third; but all of them well worth watching.

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Posted in Advocacy

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Oh yeah

Posted on March 19, 2019 | 18 comments

I think my kids likely know me better than anyone else. And last night my youngest sent me this message:

It’s such an accurate and succinct summary of who I am. Complacency equals complicity is one of my guiding principles. Speaking up and out is integral to everything I believe in.

But I also like to keep a low profile; not make a fuss until it’s really necessary. Confrontation isn’t something I enjoy, but at times it is unavoidable.

To this end I am fearless. Not that it was always so–first I had to get to a place where I no longer felt constrained by what other’s thought of me. Now that’s a super power–not giving a fuck. But (and this is a big but) only if it is combined with integrity and a lack of ego/personal agenda. I mean, you don’t want to be obnoxious or oblivious to the comfort of others. Or, at least, I don’t.

I also (ahem) don’t have much respect for authority. Never did. Ask my parents or all the school administrators that I was on a first name basis with. In fact, I don’t really recognize authority. Expertise and wisdom, yes. But rules? Again, I have no desire to make life tougher than it needs to be, for me or for you. But I shall always question the status quo. Anything that is a human construct will be taken only so seriously. I’m pretty certain why was my first first word. And then not. As in, why not?

Truth. Equity. Veracity. Courage. These are my go-to words now. And if that means trouble, well, I can deal.

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On being heard

Posted on March 17, 2019 | 12 comments

In the comments following the previous blog my sweet friend Nancy expressed concern that perhaps the conference I just attended had been a waste of my precious time.

Nancy is correct about one thing–my time is very precious.

As for the conference, I was a panelist. However, my panel was the very last on the schedule. Those of you who attend conferences know that by the final slot, 30-50% of the attendees have slipped out the door, as most of them have flights to catch.

Somebody has to go last and I suppose it may as well be me. And there were patients scattered throughout other presentations. However, most of those patients had scant experience in clinical trials. You wouldn’t ask a podiatrist to serve on a panel specifically about cardiology, so why the more lax approach toward patient experts?

Sadly, I think this is because our position at these conferences is yet relatively token; that we are not actually recognized as experts.

I agreed to attend this conference as I viewed it as an opportunity to listen and learn. And I made absolutely sure that my (our) voice was heard, as there were ample opportunities to comment or ask questions.

Generally my viewpoint was rather contentious. The first time I went to the mic it was because a presenter was describing clinical trial participants as ‘heroes.’ I let him know how distasteful I found that word. Patronizing. Over the top in a ‘let’s just put ten gold stars at the top of the page’ sort of way. Trite, cheap, inaccurate. A wink, if you will. Even if it is well intended.

I didn’t choose this path, it chose me. And calling me a hero isn’t the sort of recognition I want. Give me something solid, like supportive services.

Another time a panel was addressing the issue of enrolling underrepresented populations in clinical trials. This is all good, I said. But make darn sure (see above) that you understand that clinical trials are time consuming, often require travel, and are more costly. That it’s important to make certain participation is sustainable. I was stopped by a gentleman later who asked if it was true that only drug was paid for in a clinical trial. In my case, yes.

And of course I expressed my frustration with the whole more is better data thing. I view the emphasis on returning data to patients as a bit of a smoke screen. ‘I am a data cow’ I said–my outlandish number of scans evidence.

I am undoubtedly the square peg at these meetings—but then again, I have been places that most will never go and I feel it is vitally important to share this experience. Gratifyingly, a number of people took me aside to thank me for speaking up and out. It felt good to have my viewpoint acknowledged.

Tomorrow I will be participating in another meeting, this one with the FDA. I think it could be interesting 😉

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Here we go again

Posted on March 16, 2019 | 6 comments

Last week I traveled to Philadelphia to participate in the Patients as Partners US 2019 conference.

It was an honor and a privilege to be invited. But also, at times, incredibly frustrating. And that is because I am highly skeptical when it comes to the rhetoric surrounding Patients as Partners.

Like most events of this ilk, there were lots of people from industry, regulators, a few clinicians and perhaps a researcher or two along with a tiny handful of patients. Self described as ‘the only conference in the US that demonstrates how to involve patients throughout the entire medicines development life cycle to drive greater efficiencies in clinical research‘, the sessions had titles like ‘What does a patient-focused clinical trial really look like?’ Patient centricity, patient engagement and the ‘democratization of patient data ownership’; all were topics of discussion.

Per usual, though patients were the purported focus, there was far more talking about us than speaking with us.

This confounds me. I mean, with three phase I clinical trials under my belt, I am a bit like an astronaut who’s made multiple moon shots. And, rather than asking me, the astronaut, what space is like, the non-astronauts are up there on stage describing my experience. Talk about out of body.

It reminds me of the time someone asked my (then) husband and I about how the labor for our son had gone. My husband, the person who hadn’t given birth, responded ‘easy.’ I, who had struggled mightily to birth a ten pound four ounce baby vaginally, demurred. I was the authority on my own experience, not a by-stander.

When it comes to clinical trials, I have an equally hard time listening to the non-experts opine.

The fact that I and other patients were even invited to this conference (and in some cases to take the mic) remains groundbreaking. However, patient engagement and patient centricity and patient involvement from the ground up would seem to imply that patients should play a far greater role. Put patients on your planning committee. Take us out of the audience and put more of us up on the stage. Involving us every step of the way–‘the entire life cycle’–might just result in ‘greater efficiencies.’ Because some of the most useful data is anecdotal–data you will only capture if you give patients an opportunity to speak and–you listen.

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LOVE

Posted on March 8, 2019 | 25 comments

I feel it. Coming in from all sides. Cradling me, like a nest around an egg. Buoying me, like the waves beneath a boat. Holding me tight, like one big group hug.

There’s something flipping wonderful about having a personal motto that is ‘all people are my people’. I love me some people. By FAR my favorite animal, and that’s saying something, as the animal kingdom is rife with coolness.

The thing is, when you love other people, they tend to love you back. Magic, that. I mean, really, truly, some special sauce. And the best thing is, you can spread that shit around.

So here goes.

I LOVE YOU I LOVE YOU I LOVE YOU.

xo

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Personal skinny

Posted on March 6, 2019 | 22 comments

I had my every six week oncology appointment yesterday. Echocardiogram, labs, and a consult with Dr. Shaw’s nurse practitioner Jen Logan followed by a visit to my social worker.

It was an opportunity to double back and clarify whether or not the way I perceive my current situation is accurate. And, it would seem, I hold no illusions.

In a nutshell. My cancer is yet ALK+, and therefore partially responsive to inhibition with lorlatinib. However, the two newly acquired secondary mutations are preventing the lorlatinib molecule from binding as completely as before. Hence, the resistance. And–unfortunately–these acquired mutations are not actionable; there is no effective inhibitor for either of them.

Fortunately, my cancer is not aggressive. Nor is it indolent–but after fourteen years, we have a pretty clear understanding of how fast it grows.

Simply put, barring any new developments, I figure two years.

That can feel like a little or a lot, depending on your perspective. And as I have already wrapped my head around a much shorter time frame (3-5 months) I can do this.

However, it is also important to remember that although I am talking about a probability, possibility is not out of the question.

To this end, Jen assured me that Dr. Shaw is reaching out to both chemists and researchers urging them to come up with a magic molecule. It could just happen.

If it doesn’t, we can try a combination therapy. However, unless there is some not yet identified synergistic effect, it is unlikely this approach would be successful for my increasingly resistant cancer.

Worse comes to worse, I could return to chemotherapy (this would be the third time) in an effort to abate symptoms and possibly stabilize the cancer.

As we finished talking about possible scenarios, Jen asked me if there was anything I was particularly scared of or worried about.

I told her that I was sad but not afraid. And still hopeful. As for worries, two things. I’m not crazy about the way I’m going to die. I’d like to remain calm and I understand that not being able to breathe is going to make me feel panicky no matter how much self control I exercise. But my biggest worry is my three kids. They are all grown-ups now (something I am so grateful I got to experience) and I know they’ll be fine but we’d all prefer to have their mom hang around.

It was hard but also good, to speak of the future and the potential lack thereof. Jen asked me how I keep my cool and I told her it was time and practice. This is not my first death rehearsal.

xo

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Posted in Death and dying

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Medicine should not be a luxury good

Posted on March 4, 2019 | 4 comments

First, for those of you who are starting to shift in your seats, I have not lost my mind. Rather, I have come to a place of clarity. Truly.

I have done my due diligence. Put in the hours. Decided that just being polite (ie: expressing gratitude and playing along nicely like a well mannered advocate) is not going to cut it.

Nope. People are dying out here and I am one of them. Raising awareness? I haven’t got time for that. And, frankly, I question the actual value. It’s simply not enough to make people aware, we need to make them care.

Care not just about lung cancer, but also about core values. I mean, how did we come to a place where the primary incentive for developing drugs is financial?

Think about it. A pill is not a diamond—it’s just some powder encased in gelatin. And yet, because this system is so incredibly screwed up, the pharmaceutical industry is able to justify charging thousands and thousands of dollars for a months supply. Why? It goes back to something referred to as intellectual property. Essentially, justification for recouping investment. And, of course, reaping profit.

Well, I have to tell you that as a working artist, I don’t base the prices of my artwork on a concept as nebulous as intellectual property. If I did, my paintings would be priceless.

The incentive for developing new drugs should be, simply put, to ease human suffering. In fact, let’s drop incentive and instead call it moral imperative. And once developed no drug should be so dear, so ridiculously expensive, that those who truly need it cannot afford it.

Illness should not be viewed as an opportunity; healthcare as an industry. Which is not to say that researchers, providers, insurers, or those in the pharmaceutical business should work for free.

Appropriate compensation is justified. Over the top salaries such as those paid to these pharmaceutical CEO’s are not.

The Great Dictator was a satire made by Charlie Chaplin In 1940 and I am going to close today’s diatribe with this. A political vehicle, it condemned both fascism and antisemitism. The movie concludes with a speech that remains transcendent, and which is pertinent to far more than politics. Please take a few minutes to watch. And then think. Really think. About reason.

“Let us fight for a world of reason. A world where science and progress will lead to all men’s happiness.“

Mr Chaplin

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No shit

Posted on March 3, 2019 | 3 comments

Read this article from the NYT’s about the booming industry behind fecal transplants and weep.

“At the heart of the controversy is a question of classification: Are the fecal microbiota that cure C. diff a drug, or are they more akin to organs, tissues and blood products that are transferred from the healthy to treat the sick? The answer will determine how the Food and Drug Administration regulates the procedure, how much it costs and who gets to profit.”

Well, I could answer that question rather quickly. But as someone who has lost exclusive ownership of my own organs, tissue and blood products, I understand it’s a lot more complicated. What’s mine is not really mine.

“An obscene amount of money is being thrown around by companies trying to profit off of what nature made,” said Dr. Khoruts. “I don’t think there are clear villains here, but I worry that the regulators are not caught up on the latest science and that the interests of investors may be exceeding those of patients.”

Ok, I know I’m becoming rather shrill but tell me this is not a refrain.

“Much like the fight over prescription drug prices, the “poop wars,” as one doctor described it, mirrors long-running tensions in American health care between pharmaceutical companies and patients.”

Yes yes yes yes yes yes yes.

What if the pharmaceutical industry had a different model? Charging as much as the market will bear–the old supply and demand of capitalism– views illness as an opportunity. That is an inherently ugly concept. Imagine that rather than striving to deliver obscene profits to investors, pharmaceutical companies sought to develop the highest number of therapies at the lowest cost to consumers?

Medicine should not be a luxury good, but rather something that is accessible to all who need it. Think public education. And although I am not a market analyst and so can’t specifically address the feasibility of my proposal, I have to think that it is doable. But it will require a seismic shift in values.

As someone with skin (and plasma) in the game, I want to tell you that it sickens me that my contribution to science has been sullied by what I view as greed. Disease is a hardship, not a business opportunity. I have volunteered my time (right? I’m referred to as a volunteer in those protocols I sign) and I expect those of you who have continuously profited off of the misfortune of myself and others to reevaluate your motives. Consider this. At the end of the day would you rather see more drugs developed and marketed at costs that are affordable, thereby helping many, many people, or a higher profit margin, benefitting a few?

The answer to that question should be easy as well.

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