Tag Archives: stage IV lung cancer

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.

🙂

While sleeping

I just got back from a week in California, compliments of my friends Wendy and Cristina. More details and photos to follow. But first this.

On the fifth night I dreamt of a black and white woodpecker with wingtips burned to ash. The next morning I was having coffee with Wendy at the table when I looked out the window to where a bird was pulling suet from a feeder. It was a Hairy Woodpecker, just like the one in my dream.

On night six I had a dream that I was dancing. I felt like Shirley Temple in my full skirted dress; jumping and leaping and twirling about. Again and again people would stop to tell me what an amazing dancer I was.

In my waking state I am far from confident per my ability to dance; lack of coordination coupled with an inability to follow direction and a sense of rhythm that is best described as uniquely mine. I dance alone or in the company of alcohol or some other source of disinhibition.

To be able to dance like that in my dreams is almost as good as flying. Perhaps my wings have been singed (after all, I have been flying rather close to the sun) but who’s to say they are not yet airworthy.

Dream on.

xo

Oh Lorbrena

Like some fancy fantasy girlfriend, the drug formerly known as lorlatinib has been rebranded Lorbrena. And not a cheap date, Lorbrena. Check out these over the counter prices for a months supply:

However, even given her top shelf status, my Lorbrena is handed over in a brown paper bag to be carted home wino style. A brown paper bag that evidently blends into the surroundings so very well, I simply forgot it was there.

Yep. One whole week without taking my cancer meds. Blame it on stress; they sprayed my loft for bedbugs for the third time this week, on the same day I was getting surgery on four ingrown toenails that are an apparent side effect of hanging out with Lobrena all these years. And change; August and Lily moving out did a number on me. Then there’s memory; I just can’t. Remember. And it’s getting worse with time.

So there you have it. Gotta say, I enjoyed my little respite but starting up again resulted in a full on case of the runs and the shakes; just like our first date so very many years ago. And now, in order to keep this relationship on track, I need to begin (duh) setting an alarm to remind me to take my meds. That is, if I can remember to. Maybe I’ll even start filling out the daily diary (I usually do it in the office and when my nurse comes in, I sing a little song ‘making shit up, making shit up.’ Honestly. I am not non compliant for the sake of non compliance but those diaries are busy work. And, this being 2019, you might think we’d have a more sophisticated mechanism for capturing supposed data than a worksheet. I’m over it.

But the taking of the meds? I need to be on it.

Where your thoughts hang out

My daughter Jemesii was an amazingly precocious child. Highly verbal and given to preternatural wisdom. One day, at the ripe old age of maybe two, she said something that I shall never forget: ‘Dreams are where your thoughts go at night.’

Well yes, of course. Seemingly a simple observation but oh so much more.

Dreams are one of the reasons I love to sleep. When I am dreaming it is as if I have opened the door from one place to another. A magical place, strange and yet so familiar. From one self (waking) to another (sleeping).

Over the past two nights I’ve had a pair of dreams that seemed particularly powerful. In the first I am watching four elk graze when they turn and start moving toward me. Then I see the tiger. And then the tiger sees me. I begin to run and the only shelter is a screened in porch. I get there just before the tiger and quickly latch the door. To my surprise and great relief, the tiger simply regards me through the flimsy wood frame and wire mesh and then turns to go. I think to myself that sometimes a simple barrier is enough to protect oneself from danger. But there is more. Because this barrier is transparent, I can still see the tiger. Now he is far below and menacing a group of people gathered on the beach. They do the oddest thing (or perhaps it is the only thing to do, although I think I would have jumped into the water). They simply turn their backs to the tiger and of course this does nothing to stop him from attacking.

In the second dream I am standing in a series of lines, waiting to get into a cafeteria. At one point a number of us sit together on a wall and I share the fact that the previous night I had been very stoned while looking at the night sky. And that I had been able to hear the throb and hum of the universe. This is met with silence but an Indian man, who is also some sort of teacher, approaches me later and says ‘Absolutely. It is all moving, all the time, and that is what you heard. I too have felt it.’ The subtle (or not so subtle) wind of existence. Life. Energy. It. Us. Connected.

Where my thoughts go during the day: a captured moment.