Month: February 2015

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?

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

Spread the Dread

Many bloggers I read here in CancerLand speak of how their mother and/or other relatives had breast cancer–or how there was NO cancer history at all, cementing their shock at their own diagnosis. I always viewed my own story as a bit odd: my maternal grandmother, her sister, and her youngest daughter (my aunt), all had breast cancer. Then me, too.

One would think, that with a mother, a younger sister, and an only daughter getting breast cancer within months of each other, my own mother would rocket into the doctor’s office, demand screenings. Nope. My mother refused my numerous requests that she at least get a mammogram. I use “refuse” and “request” to be polite. I’ll just say the conversations were NOT polite, and I eventually stopped bringing up the issue in the interest of saving myself a lot of fussin’ and fightin’. I think sometimes my mother thinks not getting tests equals no bad news–ignorance is bliss. I can understand that trap a little. There’ve been times I’ve wanted to delay my doctor visits, until it becomes the battle of which is worse: not knowing at all, or potentially facing bad news. But my mother takes the cake: at least a decade since her last mammogram. She is almost 70. Isn’t 60-something the average age of a breast cancer patient? Basically, she refused to heed the once a year, 1 in 8 message Pink shoves down throats. And the irony? I still have to explain my anti-Pink views every now and again. Oh, she approves the Pink message—just, not for herself. Her frame of mind is that classic: “breast cancer is very real threat, but it won’t happen to me”. Ah that denial, I once knew it well.

Needless to say, this personal situation drives me nuts, which is one reason I rarely share it.

In the past year, her diagnosis of having a hereditary kidney condition (that no other relatives we know of have–go figure), has opened her eyes. She finally relented and had a colonoscopy—only 15+ years after the recommended age one should start having them. Yes there were polyps, removed and proven benign. Then finally her GP twists her arm enough to get a mammogram. And yes, there was an area of concern, and she was called to schedule a sonogram.

I pause here to say for all the stereotypical “I’m turning into my mother” things I notice about myself each day, how we approach medical issues is the one place we will always be vastly different. She is from the old school, revere the doctor’s word as near deity-like; I challenge everything. I prefer to attend doctor visits alone—cancer was awful in that necessity of always have an escort to help write down/ask questions/don’t drive after treatment. I’m a royal impatient bitch in waiting rooms, so I really don’t like company. Mom likes to have someone with her. Mom usually thinks all is well; I’m a typical post-cancer person—convinced each scratch is a sign of recurrence.

The other difference is I generally mean it when I say, “no don’t come with me”. Mom will say those things and really mean, “please escort me”! (Typical for her age and upbringing.)

Long story short, I took her for her word, did not go with her, and yes experienced the guilt only mothers can force on their daughters afterward. I am further frustrated because I know I would’ve advocated for her harder. The radiologist told her he didn’t think there is cause for concern at present—come back in 6 months. She is relieved and thinks all will be fine. And maybe it will be.

But, given my nature, I have doubts. Just to review if you missed the first paragraphs—imagine my mother as a dot in the center of a triangle. The 3 points of the triangle are occupied with her mother, her sister, and me, her daughter. We all had some serious breast cancer. If you were a gambling sort, what are the odds, hmmm?

Obviously, I’m not inclined to think all will be well even if two of those triangle points were removed. My own cancer was a story of falling into the smaller percentage: (false negative mammogram, E/P negative and HER2+, 1 in 233, NOT 1 in 8….). Of course I am pressing the panic button. Of course I expect bad news in the next 6 months.

But what can I do? The doctors, with more knowledge, think it is not time to panic. The media is full of stories of over-diagnosis, over-screening, false alarms. Who am I to disagree?

I do not know how to be a cancer mentor, as I mentioned in a previous post. I am not the one who will tell you or anyone: “hey it’ll be OK, just fight, be positive, and things will work out”. I will never join a local or online group as a breast cancer survivor that newly diagnosed women can turn to, to comfort and share knowledge. I’m an idiot that barely handled my cancer my own self. It is all I can do, when others around me begin to spiral, to not follow them down the drain (talking about even more folks I know than my own mother).

I’m sure most cancer patients have at least one or many people in their circle saying, “don’t worry, it will be fine”. For me, the problem was I ONLY had those types around me, to the point that every single time I expressed fear or other so-called negative feelings, I was shut down. The result of that for me was that I felt dismissed; it impacted me to the point it reverberates even today. That’s kind of what this entire blog is about: reassuring myself that those feelings are common, normal. And when the kind folks who comment on my blog posts comfort me or share their own feelings of “negativity”—well, that is another reason I keep this blog. This can be a safe place to vent, without the fear of being shut down and told to think positive, it will be OK. I do not know that it will be OK, so I will never say that. I will just try NOT to feed anyone’s panic.

I realize most people in my life need the “it will be OK” thing said to them. I do not know I can bring myself to do that every time. All I can do is try to keep myself from piling on. My stern message to myself: “don’t spread the dread”.

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