Tag Archives: Science

Talking About Life While Facing Death

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One of my more popular contributions to the Quora.com web site deals briefly with how we approach loss and watching a loved one die from cancer. This is a subset of one of the most important topics of my blog, the need to redefine the narrative of cancer. Stories that we hear and those we tell ourselves are very important in terms of how we approach and understand the world. For most of history, the narrative of cancer has been relayed in a fairly dreadful manner — and often rightfully so, because the story of the times was perhaps simply accurate. But the time we are living in now requires a reboot of that narrative, one with more optimism and hope and, more importantly than even that, a good, solid dose of actual science. Another thing that needs to be adjusted, I believe, is more of a societal approach to the empathy of death and dying and how that can be embraced as a natural, even welcome, component of life.

I am clearly not above the occasional inspirational bracelet.
I am clearly not above the occasional inspirational bracelet.

While this is a more complex issue than I can adequately address in this post, I am going to include a short answer I wrote on Quora about a year after my own diagnosis with lung cancer — at which time I had just about reached my “statistical” expectation for life expectancy with a Stage 4 diagnosis. You see, according to the abstract numbers you get through pretty much any Internet search on survival rates, Stage 4 lung cancer does not fair very well. If you believe the numbers, you’re just supposed to die. Quickly. So I did some “soul searching,” and came to terms with what dying might mean to me. Then I moved along because, for one thing, I know a little bit about reading statistics and it was clear that they did not apply to me. (My demographic, for one thing, was not properly represented, nor was the collection of treatments that had been introduced in the previous five to ten years, which is about how out of date most survival rate statistics are when you get them.) Besides, even if cancer was going to negatively impact my longevity, I still had a lot of living to do. And the plan remains to live long enough to die of something else. After all, there is no shortage of ways to exit this existence. The real question, ultimately, becomes not how or why we go, but what we do with our time here that matters. Continue reading Talking About Life While Facing Death →

Death in Threes and the Power of Words

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The common saying is that “they come in threes.” We’re talking about celebrity deaths, of course, and although this is typically the sort of nonsense that can be justified simply by shifting the period of inclusion so it always appears to be accurate, there is something eerily unique about this past week. Within nine days, we have had three prominent people of the same age whose deaths are blamed on cancer.

First, we had Ellen Stovall, age 69 and president of the National Coalition for Cancer Survivorship. Technically, she died from complications related to cardiac disease, but the cause of her heart trouble is traced back to treatments she underwent 45 years ago for Hodgkin’s lymphoma. According to her obituary in the New York Times, she had a recurrence of the lymphoma in the 80s and then also discovered that she had breast cancer — about this time she also discovered a pamphlet from the organization she would later be president of, which introduced her to the term “survivor” as a replacement for the word that had been commonly used to describe cancer patients: victim. This subtle adjustment of language helped to give her drive and focus and to become a force in the next wave of cancer awareness. She died on January 5th.

Next came the news on January 10th that David Jones, better known as David Bowie, had died after an 18 month “battle” with an undisclosed cancer just two days after his 69th birthday. While his family declined to offer details, it was reported by the New York Times that the director of Lazarus, Bowie’s Broadway collaboration, mentioned liver cancer in an interview with Danish media. Whether this meant the cancer originated in the liver or had merely settled in that organ is not clear, keeping in tune with the varied enigmatic personas the performer was known for. However, not knowing the type of cancer adds not just to the mystique of David Bowie, but the general fear and uncertainty that the word “cancer” conjures on its own. Continue reading Death in Threes and the Power of Words →

The Risks of Critical Thinking

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I almost never reblog another writer’s work, but I think that this one is worth sharing with a wider audience (partly because I don’t have the time to write my own riff on the topic today). I have written many times about the importance of critical thinking, and I believe it is not being well taught in our schools much of the time. It seems to me that too many adults in these here United States are under-practiced in basic critical thinking skills, so it is difficult to merely fault the students or their teachers. This is a problem that should start and end at home, with school being a place to practice and develop an existing skill, rather than create one from scratch.

Anyway, for your reading pleasure, my friend Elena’s post on “The Risks of Critical Thinking…”

 

December 15, 2015 by writingtimes

I recently read an article in which the author, a professor of science, deplored the pitfalls of teaching students critical thinking skills: eventually, the students begin to doubt everything, even the teacher’s knowledge and experiences. When I read the title of the article, my thoughts snapped out of “Mom in her PJs Drinking Coffee” to my alter ego, “Defender of Teaching Our Students Conscious Choices and Critical Thinking.”

I’m working on the name. But this persona is really tall, she wears super cool boots and can run really fast. In her boots, even. Not that she needs to run. She spends a lot of time standing in front of schools and ranting about how we teach our students in this country. Or don’t, as the case may be. She wears sharp fitted business suits and her hair always looks fabulous. Plus, her children are standing beside her in support and awe of her, not telling her “the hamburgers taste funny” or “you forgot to put money on my lunch card” or “by the way, the dog peed on the carpet awhile ago but it’s not my turn to clean it up.”

You see the difference.

The Defender wanted to write a rant-y response to this article on Facebook RIGHT. THEN. She’s rather impetuous. Instead, I advised that we actually read the entire article first, because that would be really funny, if we went and ranted about another author criticizing teaching critical thinking skills when we never actually read what was written.  Get it?

Read the rest of the post on its original page…

Advocacy and Enlightenment on Lung Cancer

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Shine a Light on Lung Cancer — Event Recap

I just returned from seeing the folks in my lung cancer support group, where we were treated to a recap of the Shine a Light event from this past weekend. I got to see my speech all the way through for the first time, projected on a big screen in the conference room where we meet, and I’ll admit that I made myself tear up a bit there. It’s like I was speaking directly to me. And it made me realize how much I could have benefited from an actual stylist, but I suppose that is another story.

Shine a Light on Lung Cancer at Huntington Memorial Hospital
Let’s play “Who’s Doing Chemo?” among these three gentlemen… Here’s a hint, left to right we have: Robbin Cohen, MD, medical director for the thoracic oncology program, Jorge Nieva, MD (my esteemed oncologist), myself (the lung cancer patient)  and Christine Conti, RN, nurse navigator for the Huntington Hospital lung cancer program, who brought my medical team together. If you guessed “the guy with the hair,” you’d be winning big prizes right now. If there were prizes. Sorry, no prizes. But thank you for playing.

There were 147 people in attendance for this lovely event; next year I am hoping that we can inspire something new, like a walk organized through Downtown Los Angeles with 1,000 or more people participating. High hopes, perhaps, for an often stigmatized illness. But this is about changing perception and bringing the narrative into the 21st Century.

In the meantime, please consider supporting this petition for increasing research funding, and please share it with your friends and social networks. Nothing progresses without sharing — it is the only way to truly increase awareness. There needs to be a greater discussion around lung cancer, and around cancer in general, so that people can begin to understand what this condition truly is and how it can be safely and effectively lived with when treated early enough and with proper medical care.

Too many people are still living with a fear-based paradigm about cancer, rooted in outdated treatments and late detection. Hollywood is still making movies about what cancer was like decades ago and the scientific journals are too dense or obtuse for laypeople to easily digest. TV personalities like Dr. Oz are still offering false hopes and pseudoscientific claptrap for easy ratings by promoting dietary cures and other nonsense rather than speaking truth about the rise of medical science. In fact, Dr. Oz and his guest Dr. William Li play fairly fast and loose with the notion that the foods they recommend can actually prevent or treat cancer. The sheer volume of food that would have to be consumed to even come close to the results they imply would be difficult to tolerate at best. Continue reading Advocacy and Enlightenment on Lung Cancer →

Shine a Light on Lung Cancer November 8, 2015

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I was asked to speak at the Shine a Light event at Huntington Hospital in Pasadena, CA. Below the video is a transcript, for those of you who like to read. The event certainly was not about me, and I will link to more info on the ceremony when it is posted and available, but in the meantime here is a small portion for your viewing enjoyment.

One year ago yesterday, I wrote my first blog post about lung cancer. I had just been diagnosed with inoperable metastatic stage 4 adenocarcinoma. That was a pretty long name for an ominous sounding condition that I knew relatively little about. People all around me — and it seemed everywhere across the Internet — were ready to express what a dire situation I was in. But I’m here to tell you that I feel great. Today is a fabulous day. Tomorrow I am going in for another infusion, a little bit of what I like to consider my “me time.” Granted I’m on maintenance therapy now and I kind of miss the longer treatment that I used to have, because it allowed me to get some work done on the blog or do some quality reading or catch up on my email. These days, my infusion happens too quickly to get much accomplished. But… I really can’t complain about that. Continue reading Shine a Light on Lung Cancer November 8, 2015 →

Lung Cancer Answers and Awareness Support

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As a frequent contributor to Quora.com, a website for asking questions and getting answers from people who are knowledgable about the subject, I have naturally offered input on issues related to lung cancer. After all, one of the first rules for authors is to “write what you know.” Here, in honor of lung cancer awareness month, I am collecting links to some of the answers I have supplied on Quora.

  • Read on below the links for more on Lung Cancer Awareness

Some of these questions have many answers and mine might be somewhere down the list, but generally all of them make for interesting reading and good perspectives. Popular ones may have been “upvoted” quite extensively (this could also be the case for older answers while newer answers with more merit may have few upvotes simply because fewer people have viewed them). Also, a lot of the answers are quite brief. Occasionally I do get a bit long-winded, but my contribution to the discussion could be just a few sentences or paragraphs. Overall, however, I think that these questions and answers make for good reading in a format more like a town hall meeting than a typical blog. Continue reading Lung Cancer Answers and Awareness Support →

My Frenemy, Dexamethasone

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When initially discussing chemotherapy treatments, most people begin with the thought that it is the chemo drugs themselves, those infamously toxic concoctions, that the patient would complain about most, or fear, or suffer from. And chemo does suck, what with the potential for nausea and fatigue and that notorious chemo brain. But do you know what really sucks, dear Reader? Steroids.

I recognize the importance of the Dexamethasone pills I take for three days at the start of each infusion cycle. And I appreciate that I am not taking Prednisone, which some of my friends have been saddled with for lengthy periods of time and which I had seen turn my father’s final years into a much less pleasant time than they should have been. I owe a debt to Prednisone, without which I would not have gotten ill enough to eventually lead to my cancer diagnosis, but I will never take it again. Dexamethasone, on the other hand, I can deal with. I don’t like it, but I understand the need to make my peace with the sleepless nights and mild dizzy spells and increased irritability, the hoarseness and seemingly endless peeing. Continue reading My Frenemy, Dexamethasone →

The Give and Take of the Support Group

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I met some nice people today. People who I would not normally have crossed paths with in my daily life. They were a happy, optimistic bunch, or seemed so to me, in spite of the circumstances that brought us together for the 90 minutes allotted this morning. Most of the small group knew each other, but were largely strangers to me when I walked into the room. It was my first time attending a cancer support group.

I had no idea what to expect from the meeting. The truth is, I had not been in any particular rush to attend; my impression of such a gathering was based on flimsy Hollywood portrayals, and that fuelled more by onscreen AA meetings than anything else. The coordinating nurse who ran the meeting was also the person responsible for setting me up with my oncologist and taking care of most of the administrative functions revolving around my early care from the point where my tumor was identified until I had begun my chemo drips. And she has been a part of the process since, if not directly, keeping tabs on me and checking in now and again. She had asked me on several occasions if I would attend a support group meeting and I had always put it off, thinking that I was doing fine and so, really, it wasn’t something I really needed to do.

Then she sent me a flier, with a personal note at the top, and I went and put the date in my calendar. And then there I was. Continue reading The Give and Take of the Support Group →

The Cannabis Cancer Cure Explained

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Let’s put the Cannabis Cancer Cure into some perspective.

If we face the facts, anyone purveying hemp oil or cannabis as a cancer cure is either willfully ignorant of the facts or is delusional about its proven effects. While certain cannabinoids or other chemicals found in the cannabis certainly show promise for potential cancer treatments, thus far the only valid studies have occurred in Petri dishes or grafted animal tumors. And there is one insidious fact left out of the claims proliferating across the Inter Webs.

Cannabis can make some cancers worse.

That’s right, the same chemical components that appear to kill or slow the progression of some cancer cells have also been shown to speed the growth of other cancer cells. There is a matter of dosing, too: some doses help reduce tumors while other doses will actually cause progression. And this is still in a highly controlled lab dish setting. Getting those doses correct through the filter of individual human metabolism could be a disaster, if it even works at all. Continue reading The Cannabis Cancer Cure Explained →

The Chemo Diaries: 10 Months

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Let me just start by saying I feel great. I just had another CT scan about a week ago and it is showing clearer edges to the main tumor, some puckering in the middle and overall indicates good progress. Yesterday I had my infusion of Alimta and for a nice change of pace I have cut my steroid use in half — which so far is going quite well for me. I am not a fan of steroids and this was one of my top objectives. The result has been a clearer head so far, a bit more sleep and less swelling of my feet, which translates to a nice win in my playbook. All in all, I am quite pleased with my week.

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The only downsides are things that probably won’t be issues for a while, possibly a long while. One of the effects of infusions is that slowly but surely veins collapse. I always had marvelous veins for drawing blood but they have taken a heap of abuse over the past year and a half. The labs approved by my HMO tend to use the biggest needles possible for the fastest draw and while that never bothered me before, the chemo had made it so that I bruised easily and had to rotate veins every few weeks just to avoid issues with leaking. It wasn’t until about eight months in to my treatment that a nurse in the infusion clinic asked me why I didn’t just request butterfly needles… The veins are much less prone to bruising now. Who knew?

Still, the veins are a bit of an issue. I still have plenty to experiment with, but we had to move from the arm down to the hand for this last round. My hand veins, possibly due to my normally low blood pressure, stay fairly plump most of the time, making them good targets. But it got the nurse talking to me about putting in a port one day, just to make things easier. Such a port would be under the skin just over my heart, kind of a permanent plastic plug right into my largest vein. Supposedly that would be good for a few years of constant use. Still, it isn’t something I am in a rush to do.

But a few years or more is certainly what I am looking at right now. While no one will put a timeline on anything regarding treatment, my oncologist did say that he expected I would remain on this current regimen for a fairly long time. That is pretty good news in its own special way. Of course, the main reason for switching off it would be the commercial availability of PD1 therapies. We are eager to try those, but not so eager to qualify for clinical trials, which would require progression of the cancer after the failure of my current chemo. For now, that wait is a good one.