Tag Archives: stage IV lung cancer

LOVE

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

Personal skinny

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

Medicine should not be a luxury good

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

No shit

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.

Truth

Alright, I’m on a roll. Critical, negative, a bit whiny. Generally not the way to get elected class president.

It’s a trait I’ve had since childhood. I am not complacent and I do not hesitate to speak up when I feel that a situation is unjust. A nice way of saying I am often the first to complain.

That’s why I identify as an activist, rather than an advocate (too squishy for me). And I have no interest in being a poster child—for lung cancer, or anything else. It’s absolutely important to me to keep it real, and as time has gone on, my courage in this arena has only grown.

Some years back I was given the stage at the annual LUNGevity HOPE Summit in DC. Foolishly, I tried to give it a go minus a script. My presentation went off the rails quickly, with me proclaiming to the crowd that I would ‘never be anybody’s bitch.’

As I left the platform I was thinking I’d never be invited back. I certainly offended some people (because, of course, that’s not all I said that day) but overall, the response was receptive. And my transition from grateful advocate (thank you thank you thank you) to crusading activist (gratitude with a dollop of angry on top) had begun.

For better or worse, I am nobody’s bitch. At least in spirit. In reality, I am under the thumb of quite a few entities. Trial sponsor, landlord, taxman. It is what it is and I am what I am. A squeaky wheel, square pegged, outspoken mutant. Generally easy to like. Definitely hard to kill. And certainly impossible to silence.

Where I am and where I’m not

Lunch at Slanted Door in San Francisco

I have been an advocate for lung cancer for a decade now, beginning with a story which appeared on ABC World News with Charles Gibson on June 2, 2009. Weeks later I began my blog and that fall I became one of the original peer reviewers for the CDMRP.

Ten years ago a blog about lung cancer was an unusual thing and lung cancer advocates were few and far between. Thankfully neither of these things is now true.

As I continued and broadened my advocacy efforts I have had the privilege of coming to know and care about so many extraordinary individuals. And I have watched with amazement as they have poured their passion and individual skillsets into advocacy in ways that were often beyond my own scope.

The past few weeks have been a time of soul searching. I am, without a next treatment available, once again between a rock and a hard place. It is what it is. However, this circumstance has meant that I must reassess my priorities. And what I have realized is this: I need to focus on living.

What does that mean? I shall continue writing my blog, my most consistent form of advocacy/activism all along. And I shall selectively participate in additional opportunities. However, I am on the short end of a long stick with much yet to do. As long as I am able, I want to write, paint, travel, love. Take it all in. Swallow life whole.

So there you have it. Two weeks ago I travelled to San Francisco for my friend Kate’s sixtieth birthday bash. Nos amis Melinda and Sally were there as well and we partied for three straight days. A fabulous time. And then I headed south to Palo Alto for some time with Wendy and Cristina, who I met, gee, a little over a quarter century ago when we all worked at the Redwood City Library. They generously paid for my flight and showed me a good time as well. So much fun. So much love.

And then this week my friend Lynn gifted me with a trip to Miami. I fell fast and hard for that city–lying by the pool with the sun on my face and a warm breeze blowing–a little slice of heaven. And Lynn was both a gracious host and a fabulous tour guide; we saw a little bit of everything.

So that, my friends, is where I’m at. In, out, about, around. Living it. Loving it.

While waking

I share my blogs on Facebook as well and that is generally where I get the most comments. Per my previous blog and the dream about the woodpecker, my friend (and fellow lung cancer patient) Dora Medina-Flagg had this to say: ‘Interesting dreams- especially about the woodpecker. It gave me chills, because as part of my Native American healing, I was given a woodpecker feather and told to hold it near known tumors and focus on the Creator removing my cancer in the same way a woodpecker gets rid of rotting wood while looking for bugs.’

Well, Dora’s comment gave me chills as well. I decided a bit back that I would begin practicing my own form of immunotherapy through visualization. I mean, why wait for Western medicine to come up with a way to ‘harness my immune system’? It’s mine, right? My mind, my body, my cancer, my immune system? Who better than me to initiate healing?

Of course, I’ve been talking to this body of mine all along. However, I’m not sure I could see the trees for the forest.

Cancer has the advantage for a multitude of reasons. And certainly foremost is its ability to spread on a microscopic level. Not only is it difficult to detect, you can never be sure if you’ve gotten all those little malignant cells out of there.

Previously my visualization was rather vague and it occurred to me that maybe I wasn’t paying enough attention to detail. Thinking of the whole tumor instead of those individual cancer cells.

Well, now I’m weeding the garden. Going after every little invasive seed and sprout. And it works like this:

I visualize a single cancer cell (this is going to be an ongoing project). And then I choose my mode of destruction.

Sometimes I pop them between my teeth, like a tapioca pearl. Scoop them out (hey, Woodpecker) like punky wood. Squash, smash, pry, burn. Stomp. Rip. Pinch, Pull. Pick. Tear, toss, turn inside out. Annihilate. One–at–a–time.

Think of it as a pseudo Buddhist (if also violent) form of practice. A meditation of sorts but with a let’s blow this place to pieces bent.

It might just work.

*News Flash! Dora just wrote me this: ‘Woodpeckers are significant to Native Americans because they signify purification of the object upon which they are feeding.’ 

Absolutely perfect. Cancer, be gone. I’m going to purify the shit out of you.

🙂