My Oncologist Can Beat Up Your Oncologist – The Disease Olympics Part 3

Conclusion, see Part 1, Part 2.

So this is what happened early 2013 or late 2012, can’t remember exactly. Point is, it was a long time ago, when I was still in my post-treatment, semi-depressed, white-hot angry about cancer culture phase, and was new to cancer social media. I’m admitting here I’ve held onto this negativity. Continue reading “My Oncologist Can Beat Up Your Oncologist – The Disease Olympics Part 3”

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Cancer Patient or Blender?

Lots of folks are up in arms about the Komen video featuring a woman with Stage IV breast cancer, with all the invoking of the fight and “beat” cancer language and message. I’ve been trying to figure out why I’m not as fussed about it.

When I first started blogging and finding others who expressed the same views I had about cancer (as I’ve said in older posts, I was reeaallly in a cave while in treatment, back in 2010-12), I saw a phrase often invoked that went something like: only the positive stories reach the podium. I think it referred to the fact that all the women asked to speak at those endless walks and races for breast cancer (and other cancers maybe?) were usually early stage, had beaten cancer, and were spreading the message of think positive, early detection, blah blah blah. Therefore, those with Stage 4 were not invited, because of the anticipated unhappy ending in store for the speaker.

I’m not in the position to say if more metastatic patients are being asked to podiums these days. I am vaguely aware of the Today show hoo ha last October. This patient with martial arts in the video, is she the first Stage 4 patient featured in Komen ads? I don’t know. If so, it seems only the stage is what makes this ad any different. It is still the same old message of fight and be positive, because that is the only acceptable way to be a cancer patient. I tend to hate that message regardless of who is saying it, their stage of cancer, and whichever Pink organization is putting it out. I respectfully point out I have the advantage of not being Stage 4, so maybe my view is skewed.

I can’t say I dislike Komen any more than some of the other organizations with their save the ta-tas, be positive to win, and cancer is a sexy party attitudes. I’ve mentioned in previous posts I tend to get blinded and unable to discern one organization that pisses me off from another. Komen is just selling a message as a product: positive patients who are fighting, not giving up, are worthy of your investment dollars. Only the strong survive, or at least get invited to the podium. This martial arts video just seems like more of the same. Therefore the fight/I’m a winner speech was no more and no less annoying to me than any other. I cringe at the fact that I’ve heard that stuff so much I don’t even think of it as original. In my opinion, this is not a new low for Komen—just business as usual.

Perhaps some will think I am being crass to reduce this ad, and by extension the woman in it, to a product worthy of donation dollars. But I remember reading some back and forth in some comments on one of those endless Pinktober articles last year. One woman used the usual “don’t be so ungrateful” line in her comments, and in her argument pointed out that it was the positive messages that put Komen on the map, and got all those dollars that benefit even the Komen critics. Komen needed and still needs positive representatives to get those donations because no one likes a grumpy survivor! I don’t know if this commenter realized how much she was turning patients into objects for sale. No, wait, she was not doing that—the organizations do it. And maybe we patients do it to ourselves?

This is not a new thought to me. I’ve often thought that if I should get a recurrence and need to use some crowdsourcing site to pay for my care, my Curmudgeon shtick would not rake in the donor dollars. I’m too pragmatic with my “hey, the treatment might work, but there is/was always the chance of metastasis, of death.” Like, “hey this blender might work, but it might totally fall apart.” The difference is the blender is cheaper and the buyer can get a warranty and replacement. There are no warranties with treatment, only odds of the treatment working, of survival. Of course, that is the very reason dollars are needed for research—to create those guarantees. (Is that irony? Paging Alanis Morissette!)  But that is a point too hard to sell in a catchy video with t-shirt.

I’ll stop there. I’ve thought about this topic often and have stopped myself every time. I’ve been too chicken to write about this treatment-as-investment concept, and maybe I’ll never address it again. It is repulsive to think of and discuss, although that does not mean it should not be discussed. I’m just not sure I am the person to do it; it requires people with backgrounds in marketing, economics, sociology, etc. I am just a cancer patient who feels like a defective product, since I cannot shill the message the organizations want to sell.

So, to me, the martial arts video is no different than the dancing mastectomy woman, or the celebrity recently throwing a goodbye boobs party. They are doing cancer their way, which is their right, of course. It also happens to be the way the rest of the world wants to see, and to impose on ALL patients. And again, I balk at this persistent, ubiquitous image (I link to my old post about that once again). Meanwhile, I wrestle with my anxiety that should I need crowdsourcing, how do I turn myself into an attractive blender to get those donor dollars?

Pitfalls of Residing in Cancerland

There have been a few pieces of bad news that have crossed my line of vision lately: recurrences and death. I wrote this a few months ago about the pains of remaining in Cancerland, where the likelihood of exposing oneself to such pain is much higher.

Hamster Wheel

Posted on August 17, 2013 by Cancer Curmudgeon

I think a lot about the risks and statistics regarding cancer. I think a lot about past post topics, like how folks in the kingdom of the well just want people who have/had cancer to move on already, just “get over” all the cancer. I don’t think about these things on purpose, they just pop up, unwanted. This post is about how these seemingly unrelated ideas mesh.

For those of us lucky enough to be former cancer patients, as in NOT Stage 4, our lives become about reducing risk of recurrence—diet, exercise, eliminating bad habits, taking up yoga/meditation/acupuncture (if you can afford the organic foods and things like acupuncture). Do all these right things and maybe cancer won’t come back. Then again, maybe it will.

What no one ever seems to mention (at least as far as I can tell) is another percentage or increased risk. The more former/current cancer patients in my social circle (in addition to or in place of those untouched by cancer? I don’t know) the more chances are I will hear bad news more often.  It is just the way the odds are.

Sometimes with the various blogs I read or the few folks I interact with on the interwebs, plus those IRL, it means I hear more bad news than average, meaning more sadness.

Make no mistake, my sadness is NOTHING compared to what is felt by those whose news I’m hearing.

All I’m referring to here is the fact that by hanging out in Cancerland even while I have no evidence of disease, I am still wallowing in cancer, quite the opposite of “getting over cancer” which so many of those untouched by cancer wish I would do: “get over cancer”—snort of derision.

Being in Cancerland is like getting on a hamster wheel I cannot seem to escape. Every time I turn around, someone else is getting bad news, because that is the increased risk that comes with knowing cancer patients. Maybe in 7 years I can exit the wheel—after I get through my next 2 years of bi-annual onco visits, after the following 5 of annual visits, and hopefully after that I never see him or another oncologist again. And after I stop interacting online with other cancer patients. But right now I run on that wheel like a furry critter, chased by cancer, Cancer, CANCER. Whereas before October 2010, cancer was hardly a blip in my consciousness.

I don’t know what to make of my increased risk of hearing bad news, either for myself or for others. In a conversation with Tumblr buddy Greg, he pointed out we have to celebrate the rare bits of good news, because they are indeed so rare in Cancerland. Most of the news for me has been good, but I find myself thinking often of those who keep getting hit with the bad news.

I’ve often pointed out on my blog that I am not sentimental, that I do sarcasm far better than true emotion. It is difficult for me to express words of encouragement or support or any of the other things those in pain need to hear. I think I never come off sincere, even when I am at my most sincere. So I tend not comment to others these messages, because I find words so inadequate at those most awful times. But I am heartbroken for all the sadness I hear about, I want the reason for the sadness to just STOP already. It really is that simple.

So to those reading who are Stage 4, and/or who’ve had recurrence, take this post as my message of support.

And I’m not stepping off the wheel today. I’ll keep my risk for increased chance of sadness high for now.

 

Complicated Relationship with Hope

My relationship with the word—and the concept—hope is complicated, like a love/hate thing. For the longest time, during cancer treatment, I hated the word hope. There. I’ve said it.

The reason for the hate is pretty simple: for me, it got tied up with all that Pink and Cancer-is-Positive goo that dripped from the walls of the treatment center. While the small (small-town) infusion room served patients with all cancers, most of the patient artwork on the hallways leading back to the infusion room must’ve been done by breast cancer patients. The framed poetry and artwork had all the familiar Pink signifiers, and “hope” figured prominently. Framed poems with pink squiggles surrounding the words, pink abstract paintings (with detectable words like “hope”, “strength”, and “courage”, of course), pink, pink, PINK. So, like a science experiment in which a subject gets a painful shock each time she encounters something normally considered “good”, I began to react to the word as if experiencing a painful shock. The word to me meant those beatific smiles, bald heads, feather boas and pinked out clothes. And I just did not fit into that oversold image, and never will.

I used to gripe about the word during support group meetings. The passivity of the word, in its verb form, just made me nuts—it still does. I don’t want to sit around “hoping” for scientists to come up with better treatment and a cure for my cancer. I want to push, scream in their faces, demand it—for all the good that would do (none, duh). I don’t want to hope people “get” how the reality of cancer is so different from that smiling Pink image, I want to tell the truth up front—again, for all the good that will do. My militant anti-Pinkness was beginning to form back then, out of my pre-cancer mild annoyance with Pink hype and selling. While I could not grasp and articulate what pissed me off exactly, I just knew something was off. “Hoping” was just not active enough. And I already knew that doing what actions I could do, was supposed to do—the eat right/exercise/don’t drink bundle of individual cancer patient responsibilities so we can later be blamed—were no absolute guarantee against cancer’s threat to me—just a way to make odds slightly better.

Having the noun version of hope is a little trickier. Everyone needs it, should have it. This rant is in no way criticizing or belittling folks who have it. It’s just that my hope has always been tempered with reality and a desire to avoid the delusion I think is harmful in the Pinkification of the cancer story. But here I have to question myself. I went for a mammogram at age 38 because my 48 year old aunt had just been diagnosed. “She’s too young,” I thought then. When my nipple inverted a month later, I told myself that despite the fact that family history meant a higher likelihood of my own cancer, it seemed ridiculous that I would get cancer at the same time, and at my younger age. “What are the odds”, I thought. Or was I hoping? I still don’t know what the odds are in my scenario. Doesn’t matter anyway, because I did have cancer, right then and there, 5 days shy of turning 39 years young. Back then, I did not know my chances were 1 in 233, rather than the ballyhooed 1 in 8. Still, as much as that 1 in 8 is used in fear-mongering marketing tactics, I would think, well, I’ll be 1 of the other 7. Or did I hope it? Does everyone think/hope they’ll be one of the other 7 (or 233)? I’d guess yes. Fear can drive us to mammograms of questionable usefulness, but the whole time we figure we’ll be one of the others, not a “1”, at least, not just yet.

So my reality-laced hope, or hope-laced reality, comes with thinking about odds and likelihoods, and yet I still seem to draw the short straw. Against hope and odds, I was a “1”, not one of the other 232. This fact was and is an effective destroyer of hope for me. To be fair, it is not just in matters of cancer I’ve drawn short straws. There’ve been many times of getting that short straw in other areas of my life that have taught me to hope that things will go the way of the bigger odds—but look out for that unlikelihood off to the side. It can happen, it did happen too many times to me, and I learned that hope is not so useful to me. Preparing for the worst, bracing myself, serve me better. 

mybrand

But I sit here today, waiting to get an MRI that will tell me if my cancer has returned, or if I’ve got a new one. I am utterly helpless, powerless, to do anything about it. The only activity I can engage in is to hope that I’m not joining the smaller number again, in this case the 30% of mets patients. Granted, my brand of hope is not the smiling Pink kind. My brand has a black rock group t-shirt, tattered jeans, black nail polish, greying hair, and a snarl. Because that is who I am—not an effen feather boa in sight.

What else can I do.

Chats with My Friend Greg

I learned of Ms. Keller’s essay via someone I follow on WordPress. I found Mr. Keller’s via my Tumblr buddy Greg, late Sunday night, while watching the Golden Globes (reading is a great way to tune out the more boring self-congratulatory speeches). Here is a link to Greg’s brief thoughts on a portion of this mess, via my added comments. I post this link because I value and treasure Greg’s thoughts and think them most worthy of reading, as I’ve done in the past. For those unfamiliar with past links I’ve posted, Greg is living with Stage 4 Prostate Cancer.

http://anotheronewiththecancer.tumblr.com/post/73239150634/further-thoughts-on-the-heroic-measures-article

My Reality and Your Fairy Tale

I’ve never really had that one post about the dumbass things people say to cancer patients. The one time I started to write such a post, I wound up focusing on a small slice of all those irritating phrases—I focused on the awful, blame-the-patient phrase of “lost the battle to cancer”, and how much I dislike the euphemisms for death.

Books and many essays have been written about the dumbass things said to cancer patients, and I couldn’t really add to the conversation, so I lost my motivation to do so. Now that I’m a couple of years past my final Herceptin infusion, these dumbass things are not said to me, so they are not on my mind as much. And really, I’ve finally accepted the idea that sometimes what is said to cancer patients is really meant to soothe the cancer fears of the person doing the talking, not just the fears of the actual patient.

But I had the bad luck to reflect on one particular dumbass thing today; the phrases that reassure the patient that “everything will be alright,” or “my friend/relative got cancer when she was 35 and lived to be (some big number), and she was fine…never had any more cancer!”

I’ve had a lousy month, or maybe a lousy past two months what with one problem after another. The latest involves finding new insurance, and in turn, I’ve just learned I will need to find a new oncologist because my current one does not participate in any of my new, limited choices. I’ve been scrambling to find out which of my current doctors do what plans (the internet is a failure on this, gotta call each of them to get the nitty gritty details). Long story short, I got into a conversation today with the surgeon who performed my lumpectomy two years ago and asked her for suggestions for other oncologists I might try.

I think she actually thought I was considering just abandoning oncology altogether, just not even bothering to see one anymore, since I’m about three years out from initial diagnosis. She became a bit grave on the phone.  She told me I had a “very aggressive, serious cancer” and, given my younger age and the type of cancer (aggressive, fast growing, HER2+), I need to be in the care of an oncologist “for a long, long time.” That last phrase she said slowly and with great emphasis.

Yeah, I know. I need to see an oncologist twice a year for 2014 & 2015, and then once a year for the five years after that. It is a long time, and I hope I can reach 2021 to see my first calendar year free of oncology appointments. Honestly I’m afraid to let myself look forward to that day, it seems so far away. And I know my cancer was serious. I do not take my cancer lightly, and I’m not going to blow off getting a new oncologist because I feel fine right now, which I don’t anyway. Rather, I tend to suspect every twinge of pain, every change in body shape or function, thinking it means cancer is back. The sense of threat is real and sometimes very near the surface.

I really like my surgeon, maybe a bit more than I like my other doctors, especially because she is frank, no non-sense, and always gives me all the odds, probabilities, and facts sans sugar coating. But today I thought, great, I do not need that reminder now, when I already have bajillion other things sending me into panic mode. I began to talk myself down, to remind myself that just because I read blogs reporting various tales of recurrence, that isn’t necessarily going to be my fate as well. Then I thought back to all the times I heard people with their dumbass things said to cancer patients telling me it will all be ok in the end, because there is always so-and-so who just had a little cancer that one time and lived another 50 years.

There are so many reasons to dislike this little anecdote about the person who lived oh so long after that one little cancer incident. It is so dismissive of the very real fear and very real—sometimes high—possibility that cancer will recur in the person to whom this is said. While I do welcome anecdotes, because the small percentages or small likelihood stats (some of which I fall into) are made up of people, I still tend to consider all the possibilities. And this will sound so snotty, but when I weigh the tale of some random person told by some other random person against the word of my doctor, I take the word of the medical professional—who I give money to, BTW—over the random feel good story.

The words of my surgeon are my stark reality and the reality of many cancer patients, one that sometimes is conveniently ignored by those who wish to believe in the tale of the person who lived 50 or so more years. It isn’t a total fairy tale, but it may as well be for some. For those with Stage 4, whether upon initial diagnosis or recurrence, cancer is the rest of life, and that may be a long, long time, but probably not. For me, with my likelihood of recurrence, cancer is the 10 years from October 2010 until sometime in 2019 or 2020, if I’m lucky, and then who knows how many more years if that likely recurrence happens. Cancer does not claim my every moment right now, although it occupies more moments lately as I grapple with an upcoming 6 month check-up, that is, if I can get my insurance organized and get a new oncologist.  Right now, it is taking up a lot of my long, long time.

So to those who insist on the idea cancer is no big deal, that it will be tiny a blip and I’ll get another 50 years without incident—if you continue to ignore my reality, I’ll continue to ignore your fairy tale.

Why This Smart Ass Does Not Kick Ass

Preface

People always tell me writing is therapeutic, and while I of course believe this, I never experienced it so viscerally until I began this post and the next.

I’ve mentioned many times in various posts that I loathe the battle language of cancer (the most pointed example is in The D-Word). I do not call myself a survivor because I have not died of something else yet, and some with Stage IV have animosity toward the word, rightly so. Battle, fight, warrior, kick cancer’s ass—all those words or phrases continue to rub me the wrong way, and I never questioned why. I guess I just assumed myself to be practical, pragmatic, and I’m just not the cheerleader type.

Then, I started a post about how the drop-off in activity and in amount of people in a beach resort town on Labor Day is similar to the weird quiet that happens when cancer treatment ends. It is nearly impossible to explain this kind of sudden absence of people, attention, and activity to those who’ve not experienced it. So I began writing and thought I should include some examples of beach life, what my experience has been living and working here all of my life. And that is where I veered off track. But as I wrote, I learned that this life I’ve led that is so entwined with the rhythms of beach life really influenced my way of thinking about cancer in ways I am still understanding. I learned something about myself…grrr, no, wait, I mean…good!

So this post is about how life-long residency at the beach shaped my views as a cancer patient. The next post, Labor Day, will be what started me thinking about it all.

eastcoast

Shopping Madness at the Beach

A couple of careers back, I worked in retail. Working in retail is a special kind of hell. At the beach, it takes a peculiar turn, especially on rainy summer days. All the “sister” stores under the management of the area supervisor are two hours away in the cities. The supervisor and staff members of those city stores never understood rainy beach days; at least while I still worked there (this was several years ago). Rain at the beach makes people shop and spend lots of money. So a GREAT business day would result, in which sales would be as much as ten times the normal day. Well, income-wise it would be great—but days like that are trying, customers are grumpy and angry at staff as if we caused the inconvenience in their vacation, the store would get destroyed, a lot of theft would occur, and it took a lot of work to restock and recover. In short, we earned our minimum wage and then some on those days.

When reviewing sales increases and decreases on a later conference call with other area stores, our beach store would get accolades on the “great day” and invariably would get asked, “what did you do?” Saying “it rained” was not an acceptable answer. “You and your staff should take credit for such an awesome day,” someone would chirp, probably a cheerleader type. I never would and here’s why: if I said “yeah, we sold the crap out of those t-shirts, we’re awesome, hurray for us,” that would mean I’d have to accept blame for the opposite. A store is always compared to the sales of the same day the previous year. I HATED days when it was sunny, and I could tell by the ginormous sales numbers from the year before that it had rained. “Why are your sales so much lower this year compared to last year?” the district supervisor would ask, sternly. And yes, again, “it rained on this day last year and this year it is a totally sunny day,” is not an acceptable answer. Someone had to be held accountable, for not leading, selling, motivating and what have you. But I refused to blame myself and the staff for something beyond our control. We could not sell t-shirts to people who opted to take advantage of a great beach day rather than go shopping.

I’ve been dealing with the influx and outflow of people to the beach, how that impacts things like traffic, how busy the grocery store will be, and just a bunch of other quirks I could never explain, for most of my life. But now I see how my resort business approach shaped my view of cancer.

I never took credit for a good thing that happened when I did not have anything to do with it, like rainy day sales, because I did not want to be blamed for not making it rain when sales tanked—because I cannot control the weather.

It is the same with cancer. I will NEVER blame anyone who dies of cancer as someone who failed to “think positive to overcome the disease” or who “just gave up, did not fight hard enough, a LOSER”. Those people died because cancer kills, and cancer causes death because medicine still cannot stop that. Cures still seem pretty far out of reach. The latest Pink Ribbon Blues essay reminds us that there is no link between positive attitude and surviving cancer. Treatment effectiveness was NOT a result of my adoption or rejection of “warrior” status.

Conversely, I am not going to label myself as some kind of cancer ass-kicker. I may be frustrated at the medical industry for not being as far into conquering cancer as I’d like, but I know that leaps have been made and I benefited directly from the current successes in medical knowledge, and from the decisions of my medical team. I did not kick cancer’s ass because I’m so positive—I am a curmudgeon when it comes to cancer, after all. And I’m lucky enough to not be Stage IV.

I’m glad the drugs and the medical team were effective, me and the insurance company (and the money I paid into my insurance plan) paid enough for those things, so I shouldn’t need to do any ass-kicking.

People throw around terms like optimist, pessimist. I just try to be a realist. A life of beach business brain got me here, apparently.

Hamster Wheel

I think a lot about the risks and statistics regarding cancer. I think a lot about past post topics, like how folks in the kingdom of the well just want people who have/had cancer to move on already, just “get over” all the cancer. I don’t think about these things on purpose, they just pop up, unwanted. This post is about how these seemingly unrelated ideas mesh.

For those of us lucky enough to be former cancer patients, as in NOT Stage 4, our lives become about reducing risk of recurrence—diet, exercise, eliminating bad habits, taking up yoga/meditation/acupuncture (if you can afford the organic foods and things like acupuncture). Do all these right things and maybe cancer won’t come back. Then again, maybe it will.

What no one ever seems to mention (at least as far as I can tell) is another percentage or increased risk. The more former/current cancer patients in my social circle (in addition to or in place of those untouched by cancer? I don’t know) the more chances are I will hear bad news more often.  It is just the way the odds are.

Sometimes with the various blogs I read or the few folks I interact with on the interwebs, plus those IRL, it means I hear more bad news than average, meaning more sadness.

Make no mistake, my sadness is NOTHING compared to what is felt by those whose news I’m hearing.

All I’m referring to here is the fact that by hanging out in Cancerland even while I have no evidence of disease, I am still wallowing in cancer, quite the opposite of “getting over cancer” which so many of those untouched by cancer wish I would do: “get over cancer”—snort of derision.

Being in Cancerland is like getting on a hamster wheel I cannot seem to escape. Every time I turn around, someone else is getting bad news, because that is the increased risk that comes with knowing cancer patients. Maybe in 7 years I can exit the wheel—after I get through my next 2 years of bi-annual onco visits, after the following 5 of annual visits, and hopefully after that I never see him or another oncologist again. And after I stop interacting online with other cancer patients. But right now I run on that wheel like a furry critter, chased by cancer, Cancer, CANCER. Whereas before October 2010, cancer was hardly a blip in my consciousness.

I don’t know what to make of my increased risk of hearing bad news, either for myself or for others. In a conversation with Tumblr buddy Greg, he pointed out we have to celebrate the rare bits of good news, because they are indeed so rare in Cancerland. Most of the news for me has been good, but I find myself thinking often of those who keep getting hit with the bad news.

I’ve often pointed out on my blog that I am not sentimental, that I do sarcasm far better than true emotion. It is difficult for me to express words of encouragement or support or any of the other things those in pain need to hear. I think I never come off sincere, even when I am at my most sincere. So I tend not comment to others these messages, because I find words so inadequate at those most awful times. But I am heartbroken for all the sadness I hear about, I want the reason for the sadness to just STOP already. It really is that simple.

So to those reading who are Stage 4, and/or who’ve had recurrence, take this post as my message of support.

And I’m not stepping off the wheel today. I’ll keep my risk for increased chance of sadness high for now.