Tag Archives: communication

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Too many people are still living with a fear-based paradigm about cancer, rooted in outdated treatments and late detection.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 →

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 →

Perspective: One of the Greatest Gifts of a Cancer Diagnosis

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I was skulking around the house last week, ruminating on just how bad I smelled. My wife was getting annoyed with me, insisting that I did not smell any differently; it was a hot, stagnant summer day and I was sweating (I felt) profusely. My chemo treatment was beginning to purge from my system and it seemed to me that as I would walk around a corner or even just turn my head, I would get a wiff of something nasty, putrid, sour. And I couldn’t shake it — that smell was just plain bad.

But it couldn’t be identified, or even located. And I was the only one smelling it.

Then I started to take stock of all my symptoms, which I do now and then as both a way of monitoring my body and keeping a sense of humor about the process. Because it can be pretty gross. Let’s face it, no one likes to think of themselves covered in puss-filled sores, hobbling about on swollen feet and wafting fetid breezes from God knows where throughout the room. Continue reading Perspective: One of the Greatest Gifts of a Cancer Diagnosis →

The Myth of the Wellness Warrior

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Please note, this is Part One of a series. Click here to jump to Part Two or follow the link at the end of this post. Part Two contains some very important information that greatly expands upon some of what is raised here.

Somehow I managed to miss the name Candice-Marie Fox when I was going through earlier research on foods that are claimed to cure cancer, of which her pineapple diet ranks as one of the more ludicrous. Through the grapevine, I learned of this diet yesterday and immediately I wanted to find out if there was anything plausible about it. Certainly, pineapple is healthy to eat and it is often used for digestive issues due to its enzymatic activity, so I wanted to give it the benefit of the doubt. Of course, I did not expect that there would be an actual cure in there, but maybe I could ascertain some actual benefits to the diet that transcended my initial skepticism. I was excited about this possibility; less so about discovering one more person preparing to cash in on a faux cure.

Pineapple is good for you.

A quick Google search brought up hundreds of articles online about how this woman, Candice-Marie Fox, a former model (always in the lead of the story), beat “Stage 3” or “Stage 4” (depending on the article) thyroid cancer by “ditching her husband” and eating a diet dominated by pineapple and other fruits. As is often the case in this sort of story, even as it is translated into multiple languages, the text is almost identical from web site to web site. And most of those articles can be traced back to a source in that British rag called the Daily Mail — not exactly a solid, investigative news source.

A few other “news” outlets picked the story up. It makes great click bait, after all. But fascinatingly, these actual news stories manage to get a whole bunch of facts wrong. Which is not surprising, as the former model herself seems to trip over her own facts many times, even in interviews on other web sites after her celebrity began to grow.

Continue reading The Myth of the Wellness Warrior →

Clip Show: Cancer Edition 2

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Welcome to another Clip Show! Here are some things that were lingering in open tabs for a while that I intended to use or share, but haven’t found a proper post within which to do so. I encourage you to click the links and explore, watch the videos here and enjoy. Hopefully there is something for everyone.

I don’t normally reference Fox News as a source of reason, but here is a great interview with actress Maura Tierney discussing her experience with chemotherapy:

http://www.foxnews.com/health/2012/09/26/er-star-maura-tierney-debunks-chemo-myths-after-breast-cancer/

Continue reading Clip Show: Cancer Edition 2 →

Scanning the Options

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Today I had the pleasure of going in for a CT scan, which I mean literally, as in I enjoy the experience. It is a brief scan, takes less than fifteen minutes in the actual room, but for some reason I always find it quite relaxing. The parts leading up to the scan aren’t quite as comfortable. Like choking down the solution that will make me light up from the inside…

Drinking a barium solution
Getting Radioactive

Drinking barium sulfate has become somewhat less disgusting since they introduced the mochaccino flavor, it’s true. One of the ladies in reception noticed my second bottle of the morning during my check-in and mentioned that she heard it was “pretty good.” I told her that “more palatable” was a better description, but it is admitedly a huge leap over the nasty flavors offered just a few months ago. Just one additional way in which science is continuing to earn that motto, “better living through chemistry.”

And the fasting; I hate the fasting. Not that I can really complain about four hours between 6:30 and 10:30 in the morning — since these are my usual hours between breakfast and my late-morning snack, I got off easy today. My scans are usually a bit earlier and I can’t sneak a meal in, but today I got lucky.  That’s why, I suppose, I was in an especially good mood upon arrival. Continue reading Scanning the Options →

Why I Kept My Cancer Private

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In this age of social media, some people might question why I kept quiet about my cancer treatment for as long as I did. There were some very simple reasons for me — in spite of the fact that I was writing a blog about it the whole time. (If you are learning about my experience for the first time, that link is a good place to start reading after you are done here.) Essentially, however, I wanted to keep my personal life separate from what I felt might otherwise define me in the eyes of others. This was a short-term issue, I realized, because at some point the nature of living with an inoperable cancer is that it does define much of a patient’s life, regardless of how much one might prefer otherwise. So I decided to try the slow roll out of information and, to be quite honest, it has served me well (and I also think it has been good for many of the people in my life, too).

When I received my initial diagnosis, there were certain people, mainly family members, who already knew that I had some health issues that were being investigated. In addition to my immediate family, there were also my employers and maybe one or two other people who had to be in the loop, and I knew I would tell these people right away when I had all the information.

As part of my research, before I had any solid diagnosis, I had already gone through pretty much every possible scenario in my head and followed up online to gather information on what any potential diagnosis would mean. Along the way, I also discovered that
Continue reading Why I Kept My Cancer Private →

Integrative Medicine, Positive Care and Negative Ramifications

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If we, as a society, could allocate just an additional $120 million each year toward research and development of new cancer treatments, that would seem like a great idea. Because there is a lot of money out there already directed at existing therapies, running clinical trials of proven concepts and supporting the refinement of effective treatments already in existence, it also seems like a great idea to take this $120 million and direct it toward new concepts and approaches that are not yet mainstreamed into Western Medicine. This is the reason, I suspect, that over the past twenty years or so, Complementary and Alternative Medicine (CAM) has morphed into Integrative Medicine and has been granted enormous research subsidies and acceptance within many mainstream health institutions. Allocating even a mere $120 million is a huge responsibility, so it also seems like it would be a great idea to carefully vet the areas on which the funding will be spent.

Here is some amazing news: the actual amount of government funding for research on Complementary and Alternative Medicine in 2015 and 2016 has reached $369 and $378 million annually, according to the National Institute of Health. This should be a Golden Age of Medical Advancement! Sizable annual funding being made available outside of the mainstream of modern medicine must be the answer to why there has been no definitive Cancer Cure.

Only it isn’t. And the reason is Continue reading Integrative Medicine, Positive Care and Negative Ramifications →