Category Archives: Cancer

A Day of Chemotherapy

It’s late in the evening and the hiccups have begun just as I lay my head on the pillow. Aside from that nefarious turn of events, the predictions for the remainder of my day were fairly accurate in my video diary, as hastily assembled as it was this afternoon. Journey with me, if you are curious and have roughly 20 minutes to spare, to see just what it is like to go in for my tri-weekly chemotherapy infusion.

Infusion Time!

Yes, I look a little tired; I was. And yes, there may be some sound issues; I was using a new app on my phone and rushed the whole process, and per the last sentence, I was also tired. Still, the record stands, more or less, and you can see just the extent that chemo has worn me down and crushed my spirit over the past year and three months that it has dominated my social calendar. In the spirit of this blog, I have tried to remain honest and straightforward in my appraisal of how the chemotherapy process works. While the video is clearly edited for time, it still drags at times, just like my poor, poor feet… Maybe one day I will trim a few minutes off and spice it up with music and flashy cuts. For now, this is the story of my day, more or less like it really happened.

[Edit: the original video has been replaced by one that really ought to be better quality. Also, follow up videos for the week will be posted below, so this post really should be called “A Week of Chemotherapy.”]

Monday:

More videos follow.
Continue reading A Day of Chemotherapy

The Chemo Diaries: Year Two, Round Two

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Getting ready to fluff my pillow before the chemo drip begins.

The Chemo has been going pretty well since my first real extended break. By extended, I really only mean two weeks off from the usual cycle. The first infusion after the vacation may have left me a bit more tired than expected, but I wasn’t exactly super well-rested after a week of extra stairs and cross-country travel. It will be interesting to see how this round goes.

Chemo and Gratitude

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This isn’t about still having my hair, or not throwing up all the time. Maybe it’s a little about those things. But I have been quite fortunate with regard to all aspects of my treatment and to all the people involved with the process from initial decision making to treatment to support. Nowhere along the way was I met with an adversarial situation. (Huntington Memorial and my Nurse Navigator, the illustrious Christine, get special credit for that, having gone to bat with my HMO so that I would not have to. And the whole staff with my oncologist at Keck works diligently to ensure that I am shielded from most HMO related nonsense, as well.) Continue reading The Chemo Diaries: Year Two, Round Two

Death in Threes and the Power of Words

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

Change the C-Word, Change the Story

In the Nineteenth Century and the five thousand years preceding it, there were countless deaths attributed to the C-word. People from all walks of life, all ages, genders, races and religions succumbed to this mysterious illness. Just the mention of the C-word sent chills down the spine with a growing sense of desperation and defeat. Sly businessmen sprang out of the woodwork, pitching miracle cures in little bottles and raking in money hand over fist because sometimes the patient did get better and the oil in those bottles appeared to work. More often than not, the sick would get sicker in spite of the slick sales pitch, and a lack of access to proper medical care made the situation worse. Bodies, once healthy, wasted away with the onset of the disease. In the latter stages of the illness, doctors often would not even treat the disease, so sure they were that the patient had no hope.

Miliary tuberculosis (7471756830)

Gradually, people began to talk about the C-word differently, and a truly miraculous thing happened: people stopped dying from it. The reasons were simple. For one thing, medical science was catching up to the reality of a wider variety of illnesses. Early detection became possible, allowing for a proper diagnosis and quick treatment. More importantly, it became very clear that the C-word was not a real thing. That word, of course, was “consumption,” a blanket term for pulmonary tuberculosis and any similar diseases that the populace lacked the ability to distinguish between or treat, but that was not truly ever an actual disease of its own. In reality, the term “consumption” only referred to the symptomatic withering of the body, which seemed to be consumed by the illness itself. Once the name of this condition was replaced with more specific terms and better differentiated by medical professionals, it rapidly became known as a treatable bacterial infection rather than the feared disease of yore.

Cancer is rapidly becoming the consumption of our day.

Although President Obama has rightfully put cancer research back at the forefront of popular discussion and national priorities in his last State of the Union Address, he has propagated the myth that “Cancer” is an actual thing. There can be no “cure for cancer,” as our President has called for and as so many people have promised or devoted their lives to in the past. There can be no singular cure for the big-C label of Cancer because there is, in truth, no such thing. Much like the consumption of a previous century, cancer has been a term used as an umbrella for a wide range of conditions that have been little understood and poorly diagnosed. Over the past twenty years, it has become increasingly more obvious that the old views on cancer were often wrong, misdirected or simply incomplete. These recent decades have offered major new discoveries and — perhaps more importantly — new distinctions that prove there is no “Cancer,” but rather hundreds of cancers. More to the point, there are hundreds of distinctly different types of cellular mutations that may become cancerous, and each of these should be considered for what they are, discussed as what they are and treated in an appropriate fashion. Continue reading Change the C-Word, Change the Story

Other People’s Cancer Blogs

It’s true. I’m not the only person who writes about cancer in a blog. It turns out that these here InterWebs are full of conversations and observations and ramblings and rants and meditations and monologues galore, focused on all things cancer. And, while it may not be a shock that I enjoy reading some cancer blogs, the surprise is really how darn good many of them are. Now, because I have lung cancer, I tend to gravitate toward reading the experiences of others with the same condition. And I may be biased in thinking that lung cancer brings out the best writers. But I am going to throw it out there that, at the very least, what I am about to share is some very good work by some dedicated people with important stories worth reading. I’m not going to rank the best lung cancer blog or set up any sort of competition here. I just feel that these are other experiences from other people that I would like to share with you.

I’m targeting other writers with metastatic lung cancer, partly to show that I am not a complete outlier. While this disease is still killing an inordinately high number of people, the cancer blogs I’m linking here tell an uplifting, inspiring story, especially when taken as a collective whole.

The Cancer Blogs

Janet Freeman-Daily is an aerospace engineer turned lung cancer advocate who was diagnosed in 2011. She writes about Gratitude on her blog, Grey Connections, and her posts also appear on the useful website for Cure magazine. She also has a terrific list of other lung cancer blogs which is much more exhaustive and interesting than what I am including here, and it includes detail on each author’s age at the date of diagnosis along with the type of lung cancer. Continue reading Other People’s Cancer Blogs

How My First Year of Chemotherapy Changed My Christmas Wish for You

The holidays are upon us and I am sitting at my keyboard two days after my latest infusion, my brain awash in a heady mix of chemo drugs and residual steroids. I can feel the moisture in my nasal passages dissipating as it tends to do at this time, my eyes drying up along with them. Food doesn’t taste as profound and I gravitate toward sweeter options just to find them more palatable, or more bitter options because that bitterness is only intensified. But aside from a slight sleepiness that keeps threatening to overtake me, I’m actually feeling pretty good, very happy and more or less alert… And I’ve been thinking about this whole holiday thing since I was in the chair at the clinic, watching the drip come slowly down that long tube.

Snowman Believe
This snowman has some good advice at his fingertips.

I’m a big fan of Christmas. Always have been. Not the commercial side of it, so much, but that is because consumerism and gluttony always rub me the wrong way. And not the religious side of it, so much, because dogma rubs me the wrong way, too. But the spirit of Christmas, that I do love. The concepts of peace, unification, giving — and taking the time with family and friends to focus on the love, joy and small miracles of life — these are very good things, indeed.

Every year I try to look at these positive elements (that should be) exemplified by the holiday. I think it is important to contemplate the meaning of Christmas, even from a secular perspective. This time around, there is little doubt that my views and my wishes have been influenced by my treatment. Here is my Christmas wish for you. Continue reading How My First Year of Chemotherapy Changed My Christmas Wish for You

The Chemo Diaries: Year One Retrospective

It has been slightly over one year since my diagnosis, and I am in my twelfth month of chemotherapy infusions. I find it fitting that this timing coincides with Lung Cancer Awareness Month. To celebrate, or honor, or whatever you do for these types of anniversaries or milestones, I have decided to take a look at the previous year in pictures. This isn’t so much a vanity issue, though you will notice that the pictures are basically just of me, usually smiling and trying to look presentable; the greater point of the images is to watch the progression (or, occasionally, lack of it) in my appearance from infusion to infusion.

In November of 2014, I received my diagnosis after several months of feeling ill (for mostly unrelated issues) and having little or no energy or stamina. Ironically, when the testing and scanning began in earnest in September, I had begun to incrementally improve. Every time I was irradiated for a glance within, I left the imaging center feeling better. My breath had been quiet short in August and September, but by October I was noticing an improvement — a small improvement, but enough of one to give me the notion that I was “getting better” from whatever was ailing me. Still, I wasn’t in the best of shape, and I had been spending the previous months worrying progressively more about just what could be going on in my lungs. I had spent more time doing research on the Internet than I probably spent in the college library system during my entire four-year stretch. (Okay, not just probably; I did not take advantage of the old stacks the way I should have, and that remains one of my biggest regrets about those college years — funny the things we grow nostalgic for as we “mature.”)
Continue reading The Chemo Diaries: Year One Retrospective

Advocacy and Enlightenment on Lung Cancer

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

Worried That Your Sandwich Will Cause Cancer?

The World Health Organization recently released an important report about the cancer risks associated with eating processed meat in general and red meat in particular. The report itself, as I have commented, is quite valid and important when we discuss how overall health and dietary habits impact both the healthy population and cancer patients, alike. But does this mean our lunch is going to give us cancer? If we eat a meat sandwich to get us through the day, are we causing irreparable harm? As with most nutritional issues, we need to look at this from a less simplistic point of view and a focus on moderation.

To begin with, let us discuss the sandwich model by creating the model sandwich.

Image of a sandwhich layered with vegetables rather than a pile of meat.
One thin slice of processed lunchmeat tops a stack of arugula, avocado, tomato and hidden chili peppers. And one extra thin slice of cheese, folded to fit.

We get some insight from the WHO report about the populations that are most adversely affected by processed and red meat consumption. It has long been know that eating habits hold a lot of sway when it comes to healthy issues, cancer among them. And one of the most important places we see increases in disease is among the obese. There is a strong correlation between obesity and a high consumption of processed foods, including inexpensive meats such as hot dogs, lunch meat, salami, etc. What there is not a frequent correlation to, however, is an equal intake of vegetables and fruit, fresh or otherwise. Fiber plays a strong role in our digestive system, without which we are much more prone to a range of maladies. And fresh fruits and vegetables are nutritionally dense compared to processed foods, offering vitamins and minerals that are necessary for bodies to function properly, maintain good immune support and otherwise keep us in good health.  Continue reading Worried That Your Sandwich Will Cause Cancer?

Shine a Light on Lung Cancer November 8, 2015

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