Tag Archives: Health

Wrist wrapped for chemotherapy infusion

Infusions With Friends

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There is room for a great social media app here, so officially I’m announcing “Infusions With Friends” — everyone needs a game to play while they’re stuck in treatment and when you begin to realize how many people are not only going through chemotherapy at the same time as you, but often having their treatment on the same day, it just makes sense that we ought to be able to hook up and make a game out of it. And if for whatever reason, one or another of us cannot join in the treatment fun as scheduled, it still is nice to have a way to feel inclusive and play along from home.
Chemotherapy infusion tube taped to wrist
The free hand was holding a smartphone and could have been playing Infusions With Friends!

When I got up this morning, I anticipated that two of my friends were likely to be “joining” me in chemo today — one from a a state to the north, one well to the east. It felt good, like there was some camaraderie there, full of mutual encouragement and good times, opportunities to share the view on Facebook or comment on how the mornings were spent with family before going in. And I usually find room for a few jokes around a “cocktail” theme or to comment on the need for better spa services. Sure, my material is starting to wear a little thin, which is all the more reason to get an appropriate app to market quickly. And the play at home feature would have been especially useful for me today, as I discovered that neither of my friends would be joining in from their respective clinics. One was simply a scheduling difference — she goes in tomorrow. The other had some issues with his bloodwork; last week when the same issue prevented his treatment, I thought he had simply lucked out with a week-long vacation from treatment, and I was secretly excited to get him on my schedule because I’m selfish and bored sometimes. So here I was this morning, luxuriously relaxing in my heated, vibrating lounge chair, feeling vaguely lonely in spite of the cheerful nurses and their needles. Continue reading Infusions With Friends →

Myth of the Wellness Warrior, Part 2: Supplements, Denial and the Birthday Problem

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I’ve heard a lot lately about fears that a conspiracy is being perpetrated by the pharmaceutical industry and the government to keep natural cancer cures (and natural or holistic care in general) away from patients. It makes for a dramatic story with lots of Hollywood appeal, but examining the accusations leads down a more insidious path. To get there and understand the full extent of the problem, we need to step back and look at a range of sub-industries within the healthcare umbrella, what they provide and how they intertwine. We also need to understand some basics about statistics and probability that will clarify what some of the facts surrounding this conspiracy really mean. [And when you are done reading this, please continue on with the next chapter in this ongoing series.]

Supplementing the Truth

To begin with, let’s examine the hugely profitable supplements industry (mentioned in Forbes’ SportsMoney column as one of the fastest growing industries in the world). “Natural health” advocates and self-proclaimed gurus often have their own supplement brands which they sell as part of  treatment plans pushed on their web sites, or they have affiliate arrangements with a brand that they offer as being somehow superior to other brands. The supplement industry has grown from the notion that manufactured (or synthetic) vitamins could be used to supplement areas in the diet where a person was not able to consume adequate quantities to be healthy. In an indirect way, it can be traced back hundreds of years to the discovery that citrus fruit — particularly lemons — could prevent sailors from getting scurvy. It turned out that scurvy was a disease caused by a Vitamin C deficiency. By “supplementing” this vitamin, the disease could be avoided. Continue reading Myth of the Wellness Warrior, Part 2: Supplements, Denial and the Birthday Problem →

The Chemo Diaries: The Worst Day

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With chemotherapy, there is one thing that is certain from cycle to cycle: there is always a dance between the predictable and the unpredictable. Which is to say, much of what a patient goes through can be anticipated, but there is always the possibility of a subtle or surprising change. We plan out our schedule as best we can based on previous experience, but sometimes — perhaps every time — we need to roll with how our bodies react.
Breakfast at my desk
Breakfast at my desk

I had my infusion on Monday (as is my preference). For the past year, it has been safe to say that Thursday (today) would be my “worst” day. I should be feeling the effects in my head and my gut right now, full force; I should be tired, irritable, woozy, even slightly sick to my stomach. I should be curled up on the couch or wanting very much to be there. But I’m eating a bagel at my desk and typing this and ruminating on going out for a burger. And I’m doing the household laundry, a whole week’s worth, but that’s another story.

My last chemo cycle was pretty close to normal, but I started feeling crappy a day early and finished feeling crappy a day early, all more or less. It improved that weekend, because I was more active and felt better by Saturday. I like that as a trend and hope that this weekend is quickly cleared up — especially because the weekend after my next infusion has a camping trip clearly written on the calendar. This is a precedent I can get behind. Yesterday, however, rather than having me feeling crappy a day early, I barely felt crappy at all. It is certainly enough to give me pause. But there may be a very obvious reason for why I’m feeling better (or at least less ill) this time around. Continue reading The Chemo Diaries: The Worst Day →

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 →

A Day of Chemotherapy

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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

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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 →

Other People’s Cancer Blogs

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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 →

The Chemo Diaries: Year One Retrospective

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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

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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 →