Tag Archives: Positivity

Death, Life and Tissue Paradise

Cancer, Fear, Health and Wellness, Reason, , , , , , , , , ,

Death, Life and Tissue Paradise

I reiterate the title intentionally.
Tissue lying on the floor
Shortly before reaching Paradise.

Death and dying have been on my mind lately. I recently interviewed a friend about the experience of losing her mother to cancer. I am planning an interview with a death doula, whose job it is to help people through the process of dying. And one recent morning, I spent a good deal of time mulling things over from a religious perspective, thanks to my daughter and her explanation as to how a particular used tissue ended up on the floor instead of in the wastebasket.

When I asked her how it got there, my daughter took the opportunity to concoct a whole creation story for her tissue. At the end of this story, sad as the tissues eventual demise was, it ended up going to a Tissue Paradise where it was reunited with all the other tissues with which it had once been packed. It was an interesting and inspirational twist, ultimately bringing much joy to the tissues (and to my daughter, who was convinced that her cleverness trumped my passive-aggressive attempt to get her to clean up after herself). Continue reading Death, Life and Tissue Paradise →

Clearing the Roof

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The past two weeks wore on me; at times, I felt like I could drown in the pool of stress I had been slowly sweating out of me, a thick quagmire created of my own internal angst that seemed to engulf me from all sides. I’ve drained that pool in the last couple of days after trying a little exercise I like to call Clearing the Roof. Because I realized that stress is a top-down issue, it was going to have to be dealt with right up there, on the roof, where all that clutter and debris had been sitting, decomposing into mucky, thick, unmanageable gunk. Some of it was fresh, identifiable, easily swept away. Some of it had been there for years and was entirely unrecognizable. A whole lot of it, it turned out, was just settled pollution, junk particles that had come to rest because nothing had ever washed them away. It had been a much longer time than I thought since I had done this kind of personal maintenance.

Good thing I had a tall ladder.

But first, some backstory: For years I have talked about the importance of letting go of stress. I have let it eat at me in the past while I absorbed it from other people like an emotional sponge and the effect is that it triggers very strange migraine effects that mess with the speech center in my brain, causes a blind spot that travels across my field of vision and has, on one particular occasion, caused a trans ischemic event that, for those unfamiliar with the term, is kind of like a small stroke during which I lost control of my body, hallucinated that the table full of Happy Hour beer and appetizers was bouncing around, tossing things at me, and then I could not make sentences that anyone (else) could understand for about twenty minutes while my left hand tried repeatedly to climb up my chest. Continue reading Clearing the Roof →

Wrist wrapped for chemotherapy infusion

Infusions With Friends

Cancer, Health and Wellness, , , , , , , , , , , ,

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 →

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 →

Negative Comments, Positive Response

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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

Health and Wellness, Reason, ,

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

Cancer, Health and Wellness, , , , , , , , ,
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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

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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

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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 →