All posts by Jeffrey Poehlmann

The Chemo Diaries: The Worst Day

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

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

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

Negative Comments, Positive Response

I’ll admit that I was a little perplexed this morning when I received a pair of (presumably) unrelated negative responses on one of my older blog posts, The Myth of the Wellness Warrior. Although I wrote that post about eight months ago, it continues to bring in a fair amount of traffic, including about 150 views today that appear to be mostly sourced off of Facebook and a few Google searches. While I expected that piece to illicit some reactions, I felt that the information I presented spoke for itself fairly well, and irrefutably so. I only criticized claims that are demonstrably false and I included links to vetted sources to support my statements. Still, I am no stranger to quasi-anonymous Internet attacks.

Follow this link to www.justbadforyou.com/blog
Cat pics simply bring people together, creating order out of chaos, joining everyone in blissful unity.

For a long time, I moderated a political forum that had civility as one of its prime directives. My job, in no small part, was to ensure that conversations stayed focused and did not degenerate into name calling or worse. One way that we ensured this possibility was to remove anonymity as much as we could through a registration process. The other way was through constant moderation and guidance. Because of that experience, I had initially required specific site registration here in order for anyone to comment. The system in place, however, was not entirely functional and several people let me know that they could not log in to leave comments. At the behest of a friend, I relaxed the comment restrictions and readied myself for an onslaught of SPAM and Internet Trolls. Continue reading Negative Comments, Positive Response

Living in the Moment

I have always had difficulty living in the moment. It’s something I have struggled with my entire life. It isn’t something with emotional roots so much as just being the way my brain is wired — there are both pluses and minuses to this — but there are certainly emotional ramifications. Ever since I was a child, I have taken in a lot of information from the peripheral, sometimes impacting the central focus of my attention. Often, I would simply drift away, trying to retain my connection to what was happening while being pulled somewhere else entirely. But I recognize the importance of the moment, of the experience of being there in life.

When I drift, it is not always a bad thing; in fact, I am often very invested in what is going on, but I begin extrapolating in my mind and that can take me somewhere totally disconnected from what is actually happening. The effect is an offshoot of the rich fantasy life I had from the beginning. In my earliest memories, I was already a storyteller and could lose myself for hours in imaginary worlds or alternate lives. While I remember slow days, it is hard to recall being bored in my youth. But it is easy to pull up memories of being distracted, antsy, eager to be somewhere else.

In grade school, I was not particularly academically challenged, but I was also not wholly invested in my lessons. In the middle of a math test, my mind would wander elsewhere; I would try to be attentive, but my note taking progressively betrayed me. By the time I was in college, my class notes were filled more with poetry and sketches than any transcriptions of my professors’ words. Those pages are a document of my tangential thinking, the intellectual wanderings typical of how I often experience the world, the slight disconnect to being directly in the “now.”

Continue reading Living in the Moment

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

Everyday Tragedy

I’ll admit that there are some days when I feel like stuff is pretty bad. As with most people, I imagine, it can be easy to focus on how stressed out I am over finances, health issues, car trouble,  marital concerns, whatever it is that is going on with my kid, deadlines on projects I don’t really want to be doing, deadlines on projects I really don’t want to be doing, some bullshit, that other thing, whatever… But before I go moping off into my self-aggrandized pit of misery, something usually stops me. More and more often in recent years, it has been essentially the same thing: the reminder, through everyday tragedies experienced by people I care about, that life is fragile, tenuous and entirely worth not wasting on feeling sorry for myself.

Tragedy teaches us

Drama-icon
As much as these are lessons I would rather not have learned, it is an inescapable fact that every tragic occurrence teaches something. The lesson might seem small, even devastatingly pointless, but that is part of the theme; the overarching message life gives us is that we are all relatively inconsequential, except to each other. Our value is created by our contribution, our loss felt more deeply for a future deprived.

More than that, however, life teaches us that we — any one of us, at any time — can simply be removed from the social equation. That includes everyone we love, everything we hold dear. Our closest friends. Our parents. Our children.

There are lots of practical causes for things that turn tragic. Some of these we can do something about. Better gun regulations, better mental health services, better education. Sometimes we just get lucky and hit the brakes while turning the wheel at precisely the right moment. Continue reading Everyday Tragedy

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

Truth, Peace and Holiday Values

The holiday season is upon us. Traditionally this is a time for reflection on our values, both our personal values and those shared by society at large. We are also in the midst of a heated political campaign season, made divisive largely through a fearful shift throughout our culture. Because these holidays, pretty universally across religious boundaries, are focused on peace, it seems like a good time to consider some of the foundational concepts that have created the divisiveness we are experiencing. By addressing some of these, perhaps the peace we aspire to will be easier to grasp for all of us.

The topics of gun control, national security and terrorism, taxes, healthcare and climate change are issues we all agree are important to our society. Ideological divides often prevent productive conversations on these issues, largely because we, as a society, are quite uninformed about the facts underlying each issue. And our politicians frequently do not help this situation, preferring to fan the fires of discontent rather than address issues in an open and honest fashion. We, however, as cognizant and inquisitive humans, have the ability to sidestep the easy rhetoric and parroting of sound bytes in order to debate issues in a civil manner not currently reflected by many high-profile politicians and certainly not reflected by most pundits in the media. Continue reading Truth, Peace and Holiday Values