Free Remedial Journalism Lesson Here!

OK, I HATE that I noticed this mere minutes after learning of Alan Rickman’s death. I even hated making a small note on Facebook about the language surrounding David Bowie’s death:

I didn’t want to gripe about language so soon after ‪#‎DavidBowie‘s death. But, damn, one UK headline I saw actually said Bowie “lost” his battle to cancer.

Now, it’s bad enough that the people behind the official Facebook announcement used regrettable language about his “courageous battle”, but at least they did not say lose. I cannot blame the media for using “courageous battle” when it was part of the official announcement. But putting “lose” in there–for fuck’s sake!

As I’ve said MANY times I just don’t even buy into this whole battle structure. But if I were to go with that flow for a moment, and concede that perhaps Bowie was framing the last months of his life with cancer as a battle…who in their right mind would say he lost? He released this album–kind of made it all like his art….seems to me he did his death on his own terms. Hardly a loss!

I mean, Bowie just seemed so alien, such an Artist with a capital “A”, that bringing up the old CancerLand semantics quibble seemed silly, petty, small.

But this morning I’m seeing that Rickman “suffered” from cancer, while Bowie “courageously battled” cancer. What the hell? Who is writing this? What idiot editor is approving this? Continue reading “Free Remedial Journalism Lesson Here!”

You Need To

I’ve been having a hard time writing lately; I’ve been mentally blocked. I’m even having a hard time reading some of my favorite blogs. I’m chalking it up to a temporary fatigue not just with cancer, but with the way damn near every issue is discussed. I hit a boiling point the other day that made me immediately start laughing. And I realized I am just sick of EVERYthing.

What caused this?

Well, I’ve griped here on this blog about some of my dislikes with certain words and phrases in CancerLand (see Some Word Problems). I know many others agree with my thoughts on some of these major language gripes—you know, “fight, battle, awareness…” all those. They are so overused! The word awareness is now meaningless to me. I’m sure I’ll delve into that subject (again) in some future post.

But I’ve found lately nearly all kinds of words are so overused that I’m reacting like I’m hearing nails on a chalkboard. I’ve been reluctant to complain about them because I know most everyone else uses these words, and are OK with them. But I’m gonna go out on a limb and say I’m sick of these words anyway. I’m not criticizing anyone for using them; this my fault for being too immersed in media. I’m not suggesting anyone amend how they speak or write, on the contrary, I’ve used these words myself, and only want to change my own habits. And I’m just trying to clear the cobwebs out of my mind with a few random rants.

Words/phrases that I’m not going to gripe about in this particular post—but will likely confront later—are common and simple, like “powerful/empowering”. So tired of those two being used to describe stuff. And “journey”—ugh, that one makes me nuts. The incident that made me laugh as I mentioned in the first paragraph? I ran across a blog about weight loss and the author said something like: why does my weight loss program have to be called a “journey”? And then I knew that “journey” was not just overused in CancerLand (stuff like “your cancer journey” has always made me retch). It seems society just uses words like “journey” or “struggle” for anything these days. And clearly I’m not the only one disliking it.

Like I said, I don’t want to concentrate on ALL the little words driving me crazy in this post—I’m sure more posts about one word/phrase at a time will pop up here and there in the future. What is driving me most crazy today is this one: “you need to….”

Whenever I’m told I need to do something, that pretty much guarantees I won’t do it. And yes, I’ve said the need to phrase myself on this blog (Somebody Needs to Buy These Media People a Dictionary—and I stand by the thoughts in that ancient post), so obviously I’m just as guilty of trying to modify others’ behavior to suit me.

What irks me about being told I need to do something—and yes, I’ve been told in my comments I need to rethink my points—is that I view it a shortsighted, and illogical as an argument. And even if the argument made is valid, the rudeness of the need to phrase undercuts the strength of the argument. When I was told I need to think or educate myself about an issue in an old comment, I was annoyed because it was such a poor argument. I had indeed reviewed/thought about the issues brought up by the angry comments. My mistake was poor writing, and not making myself clear to show that I’d considering many angles of the issue. That is a sticking point for me in fact—I try to see ALL sides of an issue, but sometimes that is a bad thing, it paralyzes me into not taking a stand or making a decision (that’s a post for another day).

I’ve seen the need to phrase used and the one using it is quite right, but the rudeness of the phrase, the smug superiority I perceive when I read or hear the phrase, undercuts the point. I remember a rant blog post making the rounds last Pinktober asking why other cancers are not sexualized like breast cancer. A VERY angry reaction by a patient with a rarer cancer included the directive “you need to think about…” It undercut her rant for me totally. I happened to agree—comparing illnesses, comparing how cancers are “sold” is a bad move. When discussing the sexualization of breast cancer, those of us criticizing should keep in mind the dirty benefits reaped from the campaigns (awareness begets funding—this is a post for another day, again), and bring the fact that breast cancer is the most “popular” (read: funded) cancer into the discussion. But being told we NEED TO do it just rankles.

I started writing this over 30 minutes ago and could not remember what set me off. I mean, the need to phrase is so damn overused! I researched and again it was a rant I agreed with—but the “you need to” command at the end ruined it for me. A woman had written about how racism, fat shaming, and income inequality were health issues. Someone had pointed out that fat leads to strokes in a comment to her. You know those types of comments—I see them in EVERY post written about weight. Turns out the woman had a hole in her heart that led to her weight gain, strokes and other illness. If she’d had money to be tested earlier, all those issues would’ve been prevented. It was a great lesson; I was on board with her 100%. But her directive that her commenter NEEDED to stop cosigning this crap just killed it for me.

Are there things we NEED to do? Of course. But this cultural habit of wanting to “school” someone in this manner is driving me crazy.

OK, just my stupid little random rant for today. I know it must seem odd—a curmudgeon who rants A LOT fussing about counter-rants. But, this is just my point of view today. Maybe I’ll change my mind. I’m just dealing with a great amount of cancer culture (or all health issues culture) fatigue at the moment.

Deserving Cancer

In those first overwhelming weeks of diagnosis, seemingly endless tests, and the infusions of The Red Devil, I wanted to throttle Keith Richards. Yes—that Keith Richards, from the Rolling Stones. Why? Because a couple of comedians have pointed out that when an apocalypse happens, only Richards and some cockroaches will still be left alive. He is the symbol of rock and roll excess (or one of them, I’m letting Led Zeppelin slide today) and survival. He survives while so many other misbehaving rock stars overdosed, suffered, died. There he is, still on my TV, cancer-free. I needed someone to be angry at, and he fit the bill.

I’ve never done any illegal drugs and I’ve trashed nary a hotel room, yet here I am “punished” (that concept is up for debate in this post) with all this cancer. Oh sure, I’ve done some things I regret—who hasn’t? And while I haven’t been super-exercise-y and health-nutty, compared to a few folks I know, I’ve done pretty well. Well, before cancer that is, I kind of don’t give a shit anymore. But these friends and others I know who thrive on fried junk food are fine; no cancer, and here I am, I had all that cancer. And before anyone gets into a tizzy, no, I’m NOT wishing cancer on these other folks. It’s just with the amount of headlines on magazines in the grocery check-out line—eat this to prevent cancer, excess that causes cancer—the fact that I got cancer when those who indulge in less healthy habits didn’t, well, it can just be confounding. That is all I mean.

I’m talking about the physical, cause and effect, environmental factors for the most part, but I’m kind of talking about the karma aspect too. (Note—I know karma does not work like that, you get punished in your next life—but like most idiot Americans, I am misappropriating the meaning to get my point across). I know of too many stories of other cancer patients who did life all “right” while their relatives and friends have, um, done some shady things, and those folks are enjoying fine health. I know, it is not up to individuals to judge others. But when you are dealing with cancer, sometimes the pettiness of “why me and not them?” oozes out. Some folks, myself included, have asked: “What have I done to deserve this?”

The “why me” issue was a bigger deal for me back when I was in, and freshly out of, treatment. It is a little less so these days. In fact, I began writing this post in my very early days of blogging, but pushed it aside because I don’t grapple with the issue of what caused my cancer as much. But every now and then, something, or a few somethings, pop up to make me confront it again.

What really set me off was the announcement about DDT causing breast cancer. I happened to learn about it in this article, which finished with these irritating final sentences:

While it’s impossible for women to know how much DDT they were exposed to years ago or to go back and change things, there are still steps women can take to reduce their risk of breast cancer, says Karen Kostroff, chief of breast surgery for the North Shore-LIJ Health System in Lake Success, New York.

If you smoke, quit smoking. If you are overweight, work to lose some pounds, she suggests. “Focus on the things you can control,” she says.

While I understand the “no use crying over spilled milk” message Kostroff is sending, the emphasis on individual responsibility and the illusion of control makes me nuts. No, I’m not suggesting humans should be allowed to indulge in any “bad” behavior and not expect consequences. It’s just that when I see statements like this, I immediately read it as a way to blame patients. I ranted about this issue ages ago on this blog in Did You? (read it to understand my point in this post).

I don’t know about other breast cancer patients, but I needed NO encouragement to fall into the bad pattern of trying to figure out what caused my cancer. I remember listening to “Breasts: A Natural and Unnatural History” by Florence Williams a while ago, specifically the part when she discussed exposure to plastics in young children. My mind immediately fled back to back to the summer of 1977; I was 5 going on 6, and I just witnessed the phenomenon of Star Wars. I began collecting the action figures. With great happiness I saved up allowance and chore earnings to add a new doll or spaceship toy to my little universe. Oh, the smell of freshly unpackaged Star Wars action figure—I would just inhale it and loved it the way adults love New Car Smell! (Yes, I still have my collection, unpackaged, so yes I understand they are “worthless”. But not to me.) I never played with Barbie or my life-like baby doll ever again. Growing up in the 70s was GREAT! Uh-oh, did my childhood nerd joy cause my cancer? The thought just kills my spirit.

But, hey, no use crying over the proverbial milk I spilled, right? My point is, the general population loves statements like Kostroff’s, they must; so they can convince their own selves that they are “safe”. It is fear that drives the blame. (Seriously just repeating myself here, read Did You?, my post from early 2014) Cancer and death are scary things, and the idea of doing everything “right” gives people a false sense of control, of security. I no longer have a sense of those things.

But it isn’t just the physical, environmental causes that are part of the blame game. A few random comments on this blog and elsewhere remind me that too many people buy into just world theory. The classic “cancer makes you a better, enlightened person” nonsense is wrapped up in this. Too many people say to me and others that cancer is some kind of wake-up call from the universe—to enjoy life, to re-prioritize, to value people, choose happiness, whatever. I’ve always hated that expectation of cancer-induced self-improvement, mainly because I did not seem to be improved. What is becoming clearer to me each day is how insulting that expectation is—for everyone.

What? So I was some intolerable person before cancer and I needed a threat from the universe to shape up? I was such an asshat I deserved cancer to put me in line? Am I as big an asshat as Keith Richards (or insert some other infamously bad behaving person who has not had cancer)? Are the people asking this question, or saying the “the universe was sending you a message” to cancer patients—what, are they perfect, and not in need of any life lessons, and that is why they do not have cancer?

I get it, I do. Some folks need to embrace the “everything happens for a reason” concept, I suppose it is a coping mechanism. For me it was the opposite, I found it emotionally damaging. While the idea that cancer, and by extension life and the universe, is random is scary for many, I find it comforting.  The strict adherence to rules, to one cause and one effect, makes me blame myself. Of course I understand that there were likely many contributing factors that caused my cells to divide too much and form a tumor. Some factors may have been the result of things I did (or didn’t do), and some were likely out of my control. But I am no better, and certainly no worse, than all those not “punished” by cancer.

Clearly, I am still bothered by the concept of blaming patients—why else would I still be writing posts about it? But here is the trick: I can read that statement from Kostroff, I can read comments on my social media from others being told cancer is some message from the universe, and I can recognize these things as damaging. And I can roll my eyes, take a breath, and not let my mind spin out of control with worry and self-doubt now.

These days, I am not gripped with an urge to injure Keith Richards (well, MOST of the time). I will always stand up to idiotic statements that imply cancer patients got what they deserved—and to the people who make such statements. But it hurts a little less.

Mean Streak

As I’ve said many times, cancer did NOT make me a better person. Those treacly articles and captioned pictures present on so many internet feel-good stories are just not my story. I did not learn to re-prioritize my life, cancer did not teach me life is precious, blah, blah, blah. Cancer merely made me more myself, I often think. And cancer has uncovered a rather mean streak in me, I am sorry to admit.

I know, I know, one should never read comments on articles, but sometimes I still cannot help it. Every now and again, I see something really awful. This has happened a couple of times so far in 2015.

When Jolie hit the news again a few months ago with her surgeries, the usual chit chat started about surgery as prevention, BRCA issues and so on. I found one really disturbing comment from someone saying something like everyone dies, implying Jolie should not have done something so extreme to prevent cancer, to attempt to prolong her life. It really upset me. Then, just the other day I read another story about how the rising costs of life-saving cancer drugs are putting those very drugs out of reach for some patients. (Is it just me or does that make them um, NOT life-saving? Moving on….) Of course the first comment I ran across said that one or two more years are just not worth bankrupting oneself or one’s family just to feed the greed of big pharma because after all, death is inevitable.

When I see sentiments like this expressed, I am shocked and angry. How quick some folks are to throw away the lives of people with terminal cancer! It is so very easy for these people I suppose, to make statements like this when they do not face a cancer diagnosis. Or maybe they have faced, or are facing, a cancer diagnosis, but that still does not give them the right to determine what a year or two of more life is worth to another.

This is where my mean streak rises up, a meanness I did not know I possessed before cancer. Gee I guess I did learn something from cancer (eye roll). I would never wish actual cancer on another, but I cannot help but want others to feel what it is like to have cancer (without actually having it): all the uncertainty, the wondering if it will come back and take your life. So when I read a comment like “we all gotta die sometime”, my knee jerk reaction is “yes we do, but you first—I want to live as long as I can”. I know it is an awful thing to say, but I have felt this way for a while now.

Maybe that “life is short, live every moment” lesson that gets spouted in cancer stories is a little different for me. I always knew life to be short, precious, and that I should not be wasting time doing stuff I hate. What is clear to me now, or at least I think about it more these days, is how much I want to remain alive. It was easy, before cancer, to use “life is short” as a rationalization for silly things: life is short, go on that trip, buy the dream house, etc. My view has shifted slightly. This is a more nitty gritty, how far will I go to stay alive, and why, kind of view. I suppose some of the “everyone dies sometime” commenters would view my life as expendable: I do not have children, nor siblings so no nieces and nephews, I am not destined to do great things, I spend most of my blogging time curmudgeon-ing—what does my life matter?

But that is the thing—I don’t have to justify my existence to them. My life matters to me, and I’ll do what it takes to keep it.

Yes, we all gotta go sometime, excuse the hell out of me for wanting to delay that.

Reciprocity and Respect

Long ago I reposted or tweeted some official-medical journal type article about how the warrior language can be damaging for many cancer patients. This was a report about a study on the issue, NOT some random blogger opinion piece. I got some comment or push back from someone, protesting that many folks found it helpful to be warriors, and they were tired of getting criticized for it.

It was weird because 1) I did not write the article, much less conduct the study and 2) I was merely posting it, not criticizing, and I did not find the language of the article to criticize the folks who do use the warrior language. Even weirder, it seemed like the victor claiming to be the persecuted to me—the warrior language is pretty pervasive and accepted as the social norm. Sure lots of bloggers post about their discomfort with the term, but it has not resulted in some cultural shift in which the word is used less, and folks identifying as warriors are in the minority. Cancer warrior is a commonly used term in society, in the media, in the Livestrong culture that still persists today.

The exchange with the person ended with the person saying something along the lines of if I don’t like it, don’t use it, but don’t criticize those who do. This was the weirdest part of all. Why? Because I don’t use it (so I did not need to be advised to not use it), but that NEVER stops others from using it to describe me against my will.

I’d largely forgotten about the exchange (I cannot even remember when it happened, certainly within the past year, and really have no idea which social media platform it all occurred on). But perusing some Facebook posts tonight, on National Cancer Survivors Day, I saw a few posts by bloggers who are not fans of the day, particularly some metastatic bloggers. I was shocked to read some comments on one post in which commenters flat out told the blogger she was indeed a survivor—any day she gets up she is a survivor.

Wow.

After all this time since my cancer experience began, I am still shocked at how disrespectful people can be. How dare this person force an identity on another, when the blogger, a woman with metastatic cancer, does not self-identify as a survivor? The gall of one person infringing on the wishes of another never ceases to amaze me.

I wish to be clear here. It is true, I do not like terms such as warrior and survivor and do not use them to describe myself. I have very specific reasons why I dislike them. If others wish to use them, fine. Everyone’s preference should be honored.

But I expect reciprocity—stop calling me words I will not use about myself. Everyone deserves this simple act of respect.

Addendum: Please know that I am speaking about ANY time someone labels me (or others) survivor against our wishes. Even if it is done gently, not in an attacking manner, it still is dismissive and patronizing.

Perhaps the reason I am so edgy about this is that when someone calls me warrior or survivor against my express wishes, it makes me think that they think I do not know my own mind. I do. The best analogy I can give is this: I never wanted children. From my teen years until my mid-30s, people would tell me–a grown woman–that I’d probably change my mind. I never did, I’m very happy with my choice. What makes people think they know me better than I know myself? I put up with it for too long on the not having children issue. I’ll be damned if I put up with it in CancerLand.

Need Help Finding Deleted Post   

Early August 2013, I reblogged and/or linked to a post by my tumblr buddy lux-fiam called On Loving a Sick Body. (On WordPress, here.) She deactivated her tumblr account some time ago, and has no copy of the text of that post. She contacted me last night wondering if I have or know of anyone who might have the text of that post. We think we saw in some comments that someone was posting it on a thyroid cancer site or Facebook page.

Does this post sound familiar to anyone? Or better yet, does anyone have any advice on finding posts that have been deleted (nothing is ever really gone from the internet, right)?

Any help with this would be much appreciated. Thanks!

–Cancer Curmudgeon.

The Next Time Round

Sometimes I forget that there are actually people out there who do not understand that metastatic breast cancer is usually fatal. Laurie Becklund’s video, in which she mentions how someone gave her a “get well” card upon hearing of her metastatic recurrence, reminded me of an upsetting incident that happened last summer. (For anyone who does not know, Becklund died Feb. 8.)

I’ve written often about the ever present fear of cancer, that I’ll never be “over” cancer, and how that sometimes that fear is a bit more pronounced. Last summer, after a “suspicious” mammogram that led to an MRI, and various other symptoms, I was in a state of higher anxiety about recurrence than usual. When discussing the fear, someone said to me that it would not be as difficult the second time round, because after all, I knew what to expect.

I was unable to respond. In the back of my mind, I was afraid I would sound like my usual self, always determined to see the bad side of a situation. Now I could kick myself for that. I think everyone views me that way anyway, even when I choose not to express my “negative” thoughts. But more importantly, I regret not taking the opportunity to explain what causes me fear. And yes, this person, given their profession, should’ve known better than to dismiss any fear.

It is so odd that anyone would think a second round of cancer would be easier, simply because a patient has been through it before, and knows what to expect. I want to say “yes, I HAVE done it before, I know what to expect, and that is precisely why I am so anxious—because it was horrible!!!!” I remember reading an article while in treatment, written by a caregiver, who said that over time, all the memories of chemo and its awful side effects fade. True, I don’t really “remember” how awful I felt, only because I’ve never felt so bad/sick/tired before or since. But the knowledge that it was the worst over-a-year-long experience of my life has not faded at all.

At any rate, recurrence will probably not be much like the first time round. I expect there to be variables. If it is a simple, early stage recurrence of the same cancer in the same place, I’d have a mastectomy—very different than the lumpectomy I had last time. That’s just for starters. There would be no radiation. And what drugs would get used—and would they impact me differently, given my body is not as healthy as it was going into cancer that first time? Those are just the thoughts off the top of my head.

The biggest issue is that recurrence can be in a different place, because the cancer would have metastasized. That is a completely different scenario. Metastasis is real possibility, and it troubles me that 1) some folks refuse to acknowledge or are simply ignorant of that and 2) treatment and outcomes for metastatic cancer are NOT comparable to the first cancer experience. Sometimes I wonder, with all the positive survivor culture that saturates everything, if some people mistakenly took home the message that breast cancer at least, never causes death.

For me, the fear, obviously, is death. Right now, even though I’ve had cancer, I can hang on to the idea that maybe I won’t get it again, and that I will reach an old age and die of something else. Metastatic cancer would put limits on that idea. Would I have to abandon the idea of reaching age 80, 70, 60, even 50?

Yes I’m aware of the anecdotes, of the many women who have lived well beyond that five year from metastatic diagnosis mark. And I am aware that many would prefer not to be viewed as a dead woman walking—would prefer to concentrate on living. I’m not discussing that, merely stating that I know such a diagnosis would severely limit the likelihood of reaching old age. Because I think there are so many who do NOT know this.

I do not know how I would handle a metastatic recurrence. One of the socially UNacceptable lessons I learned from cancer is that it is useless for me to say I’d know what I’d do or how I’d feel if a situation were different. I do know that I do not want to know.

I think this knowledge of limited life span should be enough for anyone to understand why a recurrence is such a huge fear, such a cause of anxiety. It should also explain why I cannot count on previous experience. The idea of “you’ve done cancer before, so you know you can do it again” concept does not apply to a metastatic recurrence scenario—at least for me.

Of course there are many other differences that I am thankfully only aware of because I read other bloggers who describe them. Differences like, frequency of doctor visits and scans, being in treatment permanently, switching to a new drug every time the current one stops working, and I’m sure there are more. How can these things even compare to that first cancer experience? For me, they do not.

Even worse, the incident last summer reinforced for me the awareness that most people do not even understand that treatment for Stage 4 (when a cancer has already metastasized by initial diagnosis—see note below) is vastly different for those of us who “caught it early”. The experience is different for ALL the “metsters”, regardless of if metastasis was found the first, second, or third time round. Thankfully I am not in that group, so I do not have the right to try and describe it. I’m guessing anyone who reads my piddlin’ blog already reads blogs by those who can articulate the experience. (Anyone who has other blogs or sites communicating the metastatic experience, feel free to leave links in comments, if you are so inclined).

I wish I’d brought up all these points to the person who tried to assure me that since I’d done cancer before, I knew what to expect, and that should reduce my anxiety. It only heightened my anxiety. That person is no longer in my life (for other reasons). I’ll make sure all those who do remain in my life, or enter it in the future, understand that the next time round, would not be the same for me, at least. Metastatic cancer is a completely different animal in CancerLand, and I’ll try to do my part to make that clear to those who just do not “get it”, to the best of my curmudgeonly ability.

Note: See here for explanation of difference between Stage 4 and metastatic breast cancer. Also find in this article information about how statistics and data do not accurately reflect metastatic recurrence. Another note about deaths not always being attributed to MBC: “Another quarter-million Americans are estimated to be waiting in the wings. I say “estimated” because no one is required to report a metastatic diagnosis. Death certificates normally report symptoms such as “respiratory failure,” not the actual disease. We are literally uncounted.” from As I Lay Dying by Becklund.

Addendum: I rarely write about MBC because I can only speak for myself, and only write from my POV–so I never want to come off as someone worried & whining about what MIGHT happen, when those with MBC are worried about what HAS happened. So I hope everyone with MBC who reads this understands that is the spirit behind the post.

An Awful Anecdote

I like to think of myself as a skeptic about damn near everything in life, but I just experienced a bit of synchronicity. No, the Cancer Curmudgeon is not going all woo woo, but this is an interesting little story. Take it how you will.

There has been quite the ripple in CancerLand about the win/lose language, and how it seems to blame those who die of breast cancer. I have a couple of views on the subject that could be considered offensive, and I’m considering a side topic of how the dominant culture controls language and attitudes, so maybe I’ll weigh in about all that later. At any rate, these two blog posts (Nancy’s Point and Regrounding—I hope these writers do not mind my putting links to their blog in my cranky blog) and article from JAMA are providing some interesting food for thought, for me anyway.

So about how cancer patients seem to be blamed for 1) getting cancer (oooo, sore subject for me) and for 2) dying from it. I have indeed seen phrases like “battled heart disease” or “battled Alzheimer’s” but not nearly to the degree I see “battled cancer”. For the most part, phrasing, especially by the media, carefully avoids saying a person lost their battle with, oh, say, a car, for instance.

I live and work at the beach, in Mid-Atlantic states where hurricanes and Nor’easters are more frequent than snow. The alarming increase of snow storms and the massive amounts of snow that has landed here last winter and now this one are just not normal. And I hate it (as I’ve whined on Facebook). This area does not have the money, equipment, and human power to deal with snow. And the snow is always preceded by ice. People love to retire to this area and make fun of us locals, pointing out how a couple of inches cripple the area. It makes me crazy (a rant for another day, not here on a cancer blog—for now, I recommend reading Celia Rivenbark’s “The Southerner Versus Snow”). That’s right, we shut down because we simply are not used to driving in this mess. I see the evidence on the side of the roads whenever I venture out.

I was reading the local news this morning to ascertain the danger of the roads, to strategize how to deal with the day. I came across a news blurb about a fatal car accident. Using the clipped, informative language of news blurbs, the piece explained how a man’s car slid off the road into a slushy area, and spun out of control, ran into an oncoming truck used for snow removal. The man died, the occupants of the snow removal truck were slightly injured. The last sentence got me: the police noted that it was likely that the “excessive” speed of the car was a factor in causing the accident. The journalist writing the article oh so carefully did not imply the accident was the fault of the dead man. He may have been speeding, may have been unsafe in dangerous driving conditions. He may have engaged in behaviors that caused his accident. Therefore he may have caused the accident which led to his own death. But he will not be blamed for it.

I’m not saying this man’s death is not sad and tragic—it is. I’m not saying that accidents don’t happen—especially car accidents—they do. Do we all do dumb things that are unsafe? Yes, and sometimes everything is ok, others, well, we call those occurrences accidents. Because even if we are doing unsafe things, we are not trying cause our own death. So my question is: if I drive recklessly, I can cause my death and it would be an accident, yet, I can do or not do any number of things that might have caused my cancer, it is no accident, and folks can pat themselves on the back and think they are safe from getting cancer, because, you know, they’re so healthy?

I dislike engaging in that “no one says xyz about this disease or thing” argument (for example, “no one sexualizes whatever cancer”, I do not like that line of thinking—a rant for another day). But I cannot help but wonder here if anyone other than the police will ask about this man “was he speeding?”, in those hushed, slightly accusatory tones I heard when folks would quiz me about what I did or didn’t do that may or may not have caused my cancer. Will anyone read the article and think, “hmm he brought it on himself, I’m better than that, that won’t happen to me”?

The issue of blame in cancer is one I’ve ranted about, re-posted, too often (and here it is again: Did You?). I’ll tackle it again. Maybe I wouldn’t have had these thoughts about this man and this accident had the blame issue not reared its ugly head again this week. I don’t know. It just seemed so unfair to read that careful language in a news article today, and know that the next celebrity who dies from cancer will be labeled as losing their battle.

File this under things that make you go hmmmm.

Time Theft

time

One thing that I think healthy people don’t completely “get” about illness is that it takes soooo much of a person’s TIME.

I’ve often said I felt like the year (and few months) of treatment was a “lost” year. I was in the throes of cancer treatments for both my 39th and 40th birthdays. I take the big picture view of how cancer cost me a year.

Lately I’ve been thinking of it in the day-to-day sense of time. The hours spent getting infused. The many, MANY hours in the waiting rooms. The lost day that was my surgery. My lumpectomy was scheduled for 10 AM; there was an emergency surgery, I did not go under until after 3 PM. That is a long time for me to fast. To say I get hangry is an understatement. As if having a disfiguring surgery were not horrible enough…shudder. It is hard for me to remember, much less write about, that terrible day when my nipple was removed.

My point (and I do have one…) is that what does not often get discussed is the sheer loss of hours involved in cancer, or any illness really. We humans often mutter, “where does the time/day go?!” as we run to the grocery store, work, whatever. Now, compound that with the time it takes to get to the medical or treatment centers. Add in the wait times. Add in treatment time. Those first 4 rounds of chemo (ugh, the Red Devil) were lost days. Then for me, the third or so day after when nausea would put me in bed all day. Then, there was the first infusion of Taxol—at least 6 hours, because it has to go in sooo slowly while the nurses watch for the allergic reaction (none for me, thank goodness). Then, what, 11 more of those infusions, I think? Too lazy to look up how many I had. Plus I had Herceptin with those. Then the 2 or 3 hours every 3 weeks of Herceptin for the rest of the year, PLUS add in radiation (thankfully short 15 minute appointments, 6 weeks, 5 days a week). All that time, Time, TIME! It is just gone.

True, I slept through every single infusion; I did not feel like doing anything anyway, so is it really lost? Well, yes, because if I had not been sick with cancer, I would not have felt too sick to do anything. I could’ve been doing something, anything, else—something fun! Or maybe I would’ve just been torturing myself with work.

Sure, these days I “waste” time looking at cat videos and other nonsense on the interwebz (especially when maybe I could be writing posts). But I can CHOOSE to do that. I had no choice in cancer. Well, I guess I could’ve elected to not treat, and maybe died, and then this whole pondering post about time would not matter. So am I wasting time these days? Or is it OK because spend those minutes laughing my head off?

I spent quite a bit of time traveling, hanging around in waiting areas of medical facilities this week—not for myself, but for my business, which is much more than a job, more than a source of income. I have chosen to help my client/patient/friend undertake treatment this year, and it will take sooo much of our time. We talk about all the wonderful things we plan to use our time for after she begins to improve. So we wait, we bide our time. We will use the waiting and infusing times to plan how to use our future time in the service of making ourselves happy.

And if some of the medical wait times are used to watch stupid pet videos, and it makes us happy—that time is not wasted either.

I’ve often said I learned all the “wrong” or unacceptable lessons in cancer (will write a post about it one of these days, when I stop goofing around watching cat videos). So I will not say this post is a lesson, it is more of a warning. To anyone lucky enough to be healthy (no cancer, no other illness), you may think you don’t have enough time in a day. You may think the cost of illness is health. But the cost is time as well.

“Dost thou love life? Then do not squander time, for that is the stuff life is made of.” – Benjamin Franklin

5 AM

When people go on about “gifts” from cancer, I roll my eyes. More like curses, I think. One such curse is some occasional insomnia for me. You know, that wake up at 3 in the morning thing. Start worrying about stuff, mostly cancer, and cannot get back to sleep. This happened to me this morning. I did the one thing you’re not supposed to do–got out my phone and started goofing around, which pretty much guarantees I won’t get back to sleep.

So I got up at 5 AM, turned on the TV to see if I could find a nice boring infomercial that would lull me back to sleep. Instead I found delight: Foo Fighters on “Austin City Limits” on PBS!!

Let me back up a little bit. I knew the Foos were going to be on ACL, and knew that it was supposed to broadcast on PBS on Feb 7. PBS always gives a date and a time for programs with the note to check local listings. I LOVE living in Maryland, except for the state’s PBS station, MPT. MPT NEVER complies with the times/days PBS advertises. Well, of course, “Downton Abbey” is on at the same time as it is on other PBS stations, but I am sooooo over that show. When the Ken Burns cancer film shows in most areas of the US, I will likely not see it until a day or so after, and I will have to really look to see when it will screen on MPT. I’d checked my local listings last night, and ACL was not listed. It did not occur to me to check 5 frickin’ AM the next day for it. It was pure luck I had a sleepless night and got up to channel surf. Who the hell watches a show of raucous music at 5 AM? Well, me. With such recent artists featured on ACL—Nine Inch Nails, Beck, freakin’ Nick Cave—5 AM is NOT the time slot I thought to research.

All griping about my local PBS aside, what a wonderful morning. Yes, I am tired today—maybe I can grab a nap later. Yeah, waking up in the middle of the night sucks, worrying about cancer in such a way it prevents sleep sucks, but what a great outcome today! Today is great! (Cue Ice Cube’s “Today Was A Good Day” in the background.) I saw an awesome show, I was reminded of the power of live performances. Also, BTW, anyone who does not love Gary Clark, Jr. (the Foos special guest) is wrong!!!

So oh no, what??!!! I have to thank CANCER for the GIFT of insomnia??!!! Weeeeellll, I’m not gonna go THAT far. But I concede that the series of events led me to getting up early, and totally enjoying it.

Anyone who has read my older posts, the music related ones, knows that I 1) am a big rock and Grohl fan and 2) do not believe in having heroes. On the latter point—it isn’t fair to dehumanize someone with hero worship, they are merely fallible humans. That said, I will admit to being extremely grateful, indebted even, to Dave Grohl and his various music affiliations. Nirvana, Foo Fighters, wacky collaborations with Jack Black, any of those combinations have been a source of comfort in my post-cancer life. Of course I could’ve faced my post-treatment depression without him. But it’s been a hell of a lot easier with the existence of Dave Grohl.

In Grohl I trust.

FooFighters-foo-fighters-773772_1224_918