IT’S NOT A TRADE OFF

Before you read this:

This could be perceived as offensive to some cancer patients. On the other hand, if you have cancer, you may have had a similar experience, and had a similar reaction, so I write this to let you know you are not alone, nor are you some mean freak. Some of us just choose to deal with life by confronting realities, not reciting platitudes. To read it or not, is a risk you’ll have to take. Sorry.

When my aunt’s cancer came back shortly after she and I both finished our treatments, Mom was talking to her about the next steps her in treatment. During this conversation my aunt said, “Oh I’m just glad it was me, not (your daughter)”. A few weeks later I was in a conversation with some newly diagnosed women (not exclusively breast cancer patients), and one older woman said, “I’m glad it was me, rather than one of my children or grandchildren.”

Nice sentiments, but excuse me, WTF? Just because this fellow patient got cancer does not mean one of her offspring will not get it 20 years, or one year, or even one month from now. Although my aunt’s cancer was ER positive and mine was not, the fact hers returned does not bode well for me. Cancer is not a trade off. When one person gets it, it does not exempt their loved ones, ESPECIALLY their kin, from getting it. I’m not trying to be mean here, just pointing out an unpleasant reality.

(Yes, I realize how incredibly selfish I sound, worrying about how my aunt’s recurrence will predict my own future. This is why I am so glad for my support group, despite the fact I am not a “joiner”. We admit to each other our sadness when one of our members has a recurrence, and simultaneously acknowledge that we immediately think, “well, that could be me”.)

Sometimes I think the phrase “shit happens” was coined because of cancer—it suits so well, maybe it should be the cancer patient motto. Nothing else so accurately sums up the way cancer strikes at random, despite anyone’s best defensive efforts, or any stray desire to have it not happen to others. Those with cancer in their family need to be prepared that it will likely happen to them, but that does not mean those with no or little cancer incidence in their family get a free pass.

I am not necessarily against all platitudes; just the ones that don’t make any sense or have no basis in fact. Just because I am a realist does not mean I did not do everything in my power to eliminate my cancer, and it does not mean I expect any less of others while they “battle” their own cancer (yes I dislike the fight and battle metaphors, but I’ll go with the flow for now). If anyone wants me to cheer them on while they do it, I am 110% with you on that. I can and will restrain myself from pointing out the unpleasant facts in person if you wish—I’m not like The Big Bang Theory’s Sheldon Cooper, incapable of stopping himself from always pointing out the check engine light to Penny. (Yes, I held my tongue when my aunt and the other cancer patient made those comments that were just mind-boggling to me—my mother’s Southern Woman manners installation at work there). That is what this blog is for—to say yes there is some extreme horribleness in cancer, and maybe the only way to beat it is to confront it, expose it for what it is, then move forward.

Just don’t ask me to spew out any banalities either, ain’t gonna happen.

Thanks for reading another one of my dumbass rants.

 

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WHAT DO I CALL MYSELF?

Early on in my post diagnoses life, I began to refer to myself as a patient, and I still do despite being about a year out of my last infusion of Herceptin (my last cancer related treatment). I rejected the word survivor at first because it just seemed like another one of those words in the pink package, along with “hope” and “battle” and “lost her fight with cancer”. These little euphemisms make me cringe. As I became more educated in the ways of the world of cancer, I learned that “survivor” makes those with Stage IV annoyed, and rightfully so. Now I am even more determined to avoid the word in reference to myself.

I was re-reading Barbara Ehrenreich’s “Welcome to Cancerland” for fact checking today and about half way through I re-read her passage about the language of cancer, derived from AIDS movement, pointing out that “patient” and “victim” have an “aura of self-pity and passivity” (hmmm, passive is exactly how I view that word “hope” so popular in breast cancer culture, but that is another post).

OK I might have a bit of self-pity because cancer landed on me, but that did not stop me from taking my medicines, actively monitoring my treatment regime, and doing many other things to make sure the tumor went away. But the truth is, I don’t take credit for it; the drugs, the surgery, the radiation did the “fighting” for me. I was OK delegating that task to modern medicine, while I advocated for myself as a patient and battled the insurance company. I’m never going to say that having cancer did not totally suck, and I will never stop being angry that I got it, even as I move on with my life. For me, it has less to do with self-pity and more to do with being realistic, but hey that’s just me.

I would not classify myself as passive. There are indeed passive patients, and in the beginning I’m sure I was, just going to and from whatever tests and whatnot that seemed to be scheduled without my input. But I learned to take control, to be an active patient. I did simple things, like scheduling chemo infusions in the afternoon so I could at least have lunch before going to get poisoned (I could never eat after infusion). When I was done at  5 pm, great! I could just go to bed. But even while the good medical professionals at my cancer center use the “survivor” style language, they still treat all patients like “passive patients”, not “strong survivors”. Even now, a year out of treatment, I still define myself as a patient because of this. I still have to haul my ass in there every six months, and at the end of the meeting with the oncologist, I am handed a list of appointments to attend at the next six month mark. These appointments are made for me, without anyone bothering to ask me if any days or times are convenient. I am a patient and I am to show up at the appointed time, that’s that.

Well no, it isn’t. Since I am self-employed running a pet sitting business, I tend to need a bit of flexibility in my appointments. I cannot just drop a scheduled check-in with a pet, because that is a payment I would miss out on. So I tell this to the medical appointment makers as I once again change my appointment. “Hey, y’all wanna get paid? Then stop making appointments at times I need to work.” I know my medical team cares for me, but this is still a business, with a financial transaction, and, man, bring up the subject of money, especially the threat of non-payment, people get real accommodating! But I know that in six months it will be forgotten, that I will again be handed a list of new appointments, because, hey, I am still their patient, no matter what I call myself.

My occupational hazard is to describe my status in pet care terms. When I was at the treatment center every week or everyday during chemo and radiation, I compared it to being “crated”, like a puppy being trained not to chew the furniture while the humans are away. Once I graduated to my every-third-week Herceptin infusions, I considered myself on the “short leash” with a gentle lead, perhaps. Now that I only go in every six months, I see myself as on the extendable leash; able to explore more of the world outside of cancer, but they keep reeling me back in.*

So I shall continue to refer to myself as a patient until the cancer center lets me off their leash, or at least until I think of some better word. What I will do in the meantime, as a non-passive, non-self-pitying person who had cancer, is use the anger to become an advocate to push medical science to find out the causes of cancer, to develop better methods of detection and treatment, and to be the one in the dark corner in the pink world where I whisper to others with breast cancer, “If you don’t have anything cheery and pink to say, come sit next to me.”

*Note: No medical tools or infusion machines were chewed or harmed during my internment in cancer world (i.e. when they had me crated).

Fight(ing) With Food or, Do I Fight Cancer with Food, or Am I Fighting with Stuff On My Plate?

“Hey, wait, I’ve got a new complaint”

-Kurt Cobain/Nirvana, Heart-Shaped Box

Yes, I am going to complain about another one of those pieces of advice on how to reduce risk of cancer.

I recently stumbled over a couple of articles touting the positive impact of plant-based diets on cancer. One of the articles extolled the virtues of veganism, encouraging the reader to go one step beyond simple vegetarianism. But this article held a tad of controversy; as one clicks the various links to the studies sited within, one will see the vegan diet actually increases the chance of colorectal cancer. Another article simply focused on eating “colorfully”, as carotenoids may be directly anticarcinogenic. I was especially interested in this article, because it says this is especially helpful to breast cancer patients who are NOT ER positive, as in more helpful for those of us that are triple negative or HER2+. It seems most info/advice for breast cancer out there pertains to estrogen positives, rightly so, as it is the most common form.

These two articles sited various nutrition or oncology resources, and were written using language explaining how the properties of the vegetables work in the body to fight cancer. They are certainly more persuasive than the headlines on those stupid women’s magazines my mother read each week during my infusions, and that I would read after she finished, while waiting for the last drop of liquid poison to get into my port. Reading those quotes while sitting there, and while standing in line at the grocery store, and just about anywhere on anything about food and/or health, really began to irk me.

These proclamations are NOT news. I’ve noticed the pervasiveness of the “eat this for a better heart/to prevent cancer/to lower cholesterol” articles for ages. Enough already—we get it! (Yes, I know that the underserved populations do not always know this info, but they are not the target audience; preaching to the choir will never change that fact).

Hey, I like vegetables. I constantly ate carrots as a little girl, to emulate my hero/boyfriend, Bugs Bunny. And I never once went to Acme to buy an anvil to drop on anyone’s head, proving that it is possible for little kids to learn the good habits, and not the bad things, from cartoons and other violent forms of entertainment (don’t think old time cartoons are violent? Watch them again upon reaching parenting age).

No I have not eaten the perfect anti-cancer diet, but I daresay my diet is better than lots of people without cancer. I vacillate between blaming myself– “I got cancer because I hate tomatoes, if I’d just learned to eat them, I would not be in this mess” and—“this is ridiculous, I ate enough garlic/spinach/walnuts to prevent cancer, the study must be wrong”. But I know I am not the only one with this feeling, one of the comments on the vegan article says “well then I never should have gotten damn cancer”. This comment breaks my heart. Just another example of the way the body can betray a person—do everything right, and still get cancer. Just another person perhaps thinking “yeah, what about me, is this my fault”.  Makes me want to drop an anvil on someone’s head.

I know this is just another case of me allowing myself to be irritated by something that was not put out there specifically to irk me. I know this info is out there to encourage people to take better care of themselves, and that these studies and headlines never guarantee “eat this food and you won’t get cancer!” I know that much of this internal struggle has to do with my desire for control…my wish that there is something, anything, I can do to prevent going through cancer again. But there isn’t, and I’ve somehow twisted this in my mind, making myself believe that the headlines and news articles are lying to me, and to people without cancer…filling them/us with false hope, when the truth is that cancer just isn’t all that picky about what person it strikes.

All of this has made me develop a hateful relationship with food. I now force myself to eat tomatoes by cutting them up tiny as possible in my salad, which I eat more of now, even though I prefer my veggies lightly cooked. I no longer cook my food in plastic in the microwave, in fact I avoid using the microwave whenever possible. But then I get angry and am overcome with the desire to eat fried chicken smothered in cheesecake for dinner (not really, I am exaggerating for effect, I eat those things separately). I mean, screw it….I’ve had cancer, might as well eat what I please!

So, now I have food issues, where none existed before. I just…never know what to eat, so I don’t. So to end this post how I started, I present the song lyric from above, but the misheard version, which sums up my feelings some days as much as the real version!

“Hey, wait, I’ve got a naked plate”

Nirvana’s Heart-Shaped Box mondegreen (misheard lyric)

P. S. I LOVE misheard lyrics, check out books by Gavin Edwards, great titles like When A Man Loves a Walnut, and for the holidays Deck the Halls with Buddy Holly. The books have great illustrations of the misheard lyrics; my personal favorite drawing just has to be for “slow motion Walter, fire engine guy”, which really means “smoke on the water, fire in the sky”.

Could’ve Been Worse

A few days ago I re-blogged a post from The Sarcastic Boob called Just. The post made me reflective. In my early clumsy attempts to be a “good cancer patient”, I often thought about things that were not so bad for me.

  • I was Stage III, not IV.
  • My blood count never got so low I needed a transfusion, and it seemed all the other cancer patients I spoke to were getting transfusions.
  • I don’t think I ever actually threw up during chemo (waking up from surgery, another matter).
  • My hair started coming back almost as soon as I finished Adriamycin; the Taxol seemed to have little impact on it. So, my hair issues were not as bad as others’.
  • I did not really suffer any neuropathy. I think one time I had a little loss of sense in my fingertips; I dropped a mug I did not seem to feel (shattering into a million pieces of course). But this did not last long, and I still have feelings in my fingers and toes. In fact, it seems these extremities are more sensitive; I no longer tolerate extreme cold—always were gloves and socks…so much for wearing stylish flats once the temps dip below 55!
  • The few food aversions I developed I got over eventually, except for fast food French fries, and I’m better off having that particular aversion.
  • And finally, I was estrogen & progesterone negative, I was HER2+, meaning 1) I would not have to put up with taking Tamoxifen for 5 (now 10????) years with all its side effects and baggage and 2) I could have Herceptin every 3 weeks for a year, which is super effective in preventing recurrence (pay no attention to that pesky $8,000-a-pop price tag behind the curtain…). So, I could keep on taking birth control pills, I do not have to go through an early menopause.

I feel guilty about being so “lucky”, especially on that last count. See, the girls in my cancer support group either have kids or want them, and all of them can no longer have them, and the ones that do have them also face the reality of knowing they will not be able to watch them grow up—which I cannot imagine how to handle. And I know it is especially galling for them when the issue of “delaying childbirth/breastfeeding” as a risk factor comes up. It annoys me because I would never do something so idiotic as have a kid just to reduce cancer risk when I am so unsuited to be a mother—I cannot imagine the pain of my friends who really did not even “delay” childbirth (they are all a bit younger than I), and yet they still got nailed with cancer. This is the only situation in which I will feel guilty or apologetic for never wanting kids.

Maybe my “it could’ve been worse” attitude, or my making light of some of the more ridiculous aspects of the past two years, are my way of toning down my complaints, because I certainly have plenty of those. Or maybe it is just my “bah, humbug” curmudgeonly way of counting small pieces of good fortune.

Exactly what I’ve been trying to say….

The Sarcastic Boob

I have to tell you, every twist and turn of this cancer experience always reveals something new.  There is the physical stuff: physiology, biology, and chemistry.  There is the psychological stuff: fear, resolve, sadness. happiness, and uncertainty.  And then there are the intangibles.  You could argue these are part of the psychological, but I disagree.  By intangibles I mean support and empathy, both real and virtual.

Over the last three weeks or so I’ve had the distinct displeasure of witnessing individuals who, on discussion boards, rage and lash out at other people with insulting, judgmental, and patronizing comments.  Online rudeness doesn’t surprise me at all.  Indeed, it’s pretty standard in the virtual world.  When I first used email for a class in college, I was shocked when a classmate of mine, in addressing a woman with whom he disagreed, wrote “See ya!  Wouldn’t want to be ya!”  He was reprimanded…

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The Thing About the Hair

So I’m addicted to Top 10/20/100/500 lists. Every time Rolling Stone magazine lists top x amount hip hop songs or albums of the rock era or guitarists, I’m all over it. When VH-1 shows top one hit wonders of the 90s or whatever, I tune in, even if I’ve seen it before. So the other day I was watching for the umpteenth time top shocking moments in music—you know, like that time Ozzy bit the head off a dove, or when R. Kelly got arrested for sex with a minor, and all the horrible deaths of icons. Of course, high on this list is that time Britney Spears left rehab and went directly on to shave her head, and then a few days later, attack a photographer with something (an umbrella maybe?) looking especially crazy with that bald head.

I thought, man, when I shaved my head after my second chemo infusion, I wish I’d had the energy to reenact that scene, maybe record it, put it on Youtube. In fact, a friend of mine, in an effort to cheer me up when I called him to say “well, my head is shaved,” said, “good, come over and let’s reenact that time Sinead O’Connor tore up a picture of the Pope on SNL.” If I had not been so nauseous all the time, I totally would have done it. I LOVE to rip pieces of paper in half and yell dramatically (still do, but now I have hair). Lots of my lesbian acquaintances loved my G.I. Jane look, and the gay men loved it too. One man rubbed my head and said joyously, “you look like a little boy!”  Argh, flashback to kindergarten, my mother always kept my fine, thin hair short, and a little boy said to me one day, “you look like a little boy!” I cried and cried (give me a break, I was 4). The man’s words sent me spinning back to that awful moment for a split second, until it dawned on me “oh wait, this is a compliment, he likes my boyish new look.” Yeah, that was definitely one of my stranger cancer moments.

As I progressed from little kid to teen, my fine, thin hair became coarse, curly to the point of bushy-like so I kept it long to weigh down and eliminate some of the curl. It was half way down my back in college, and as I grew older, I kept it trimmed, but a strange thing happened. It seemed to get to my shoulders, and stop growing. No matter how long I went without a trim, it just refused to get any longer, to get back to my college era glorious length. I worried as my hair returned after cancer if my hair would do that reach-a-point-and-stop thing again. And I desperately need the length. When my hair finally reached the 2-4 inches length, I began to resemble Willy Wonka-era Gene Wilder. I’m a bit past that with the hair growth now, but it is not as long as it was when I shaved it, and it is still very curly. I look forward to that going away.

Hair is a big deal in cancer world. Some women fear the loss of their hair more than the loss of their breast(s). Not I, but that’s another post. I heard a lot of “it’s just hair, your health is more important, so you have to endure it to get the healing chemo” type of comments. For me, the issue wasn’t the actual hair, it was what it meant: my normal, pre-cancer, healthy life. Before cancer, the first thing I did each morning as I woke up was throw it into a ponytail to keep it out of my face as I made coffee, walked the dog, etc. After I shaved it, each morning I sleepily reached up to put my hair in a ponytail, and was immediately shocked into the reality of “I have cancer”. Without my hair, it was like I never had even a split second of respite from the knowledge of cancer and my mortality.

The unruliness of my freshly re-grown hair, along with numerous other marks and pains residing in and on my body, are constant reminders of what happened to me, and the fact that it might happen again, and if and when it does, that it might kill me. I did my best at the time to be lighthearted about it, to joke that I’d become Britney, Sinead, and Demi, but as I got further along in treatment and the “whole cancer thing”, my sense of humor about it diminished. Well, my sense of socially acceptable humor, anyway—I still like tumor humor, but some folks, especially those not directly involved with cancer, don’t like it. So thanks to all y’all who make “you look great” comments about the newly shaved cancer patient’s ‘do, but remember some patients don’t like the look, and I don’t think you’d be willing to shave your head unless you had to.

P.S. Attention Film Industry, Hollywood: When you make a movie including a character with cancer, it’s “nice” they shave their heads (ahem, being a tiny bit sarcastic here). But understand that chemo causes HAIR LOSS, not BALD HEAD. That means all hair. Yes all of it. Even the hair on your special place and your eyebrows. So at least have actors thin out the eyebrows for crying out loud. I’m looking at you Joseph Gordon-Levitt (50/50) and Emma Thompson (Wit). Both great actors (I love you Joe!), but grow a pair and really show us hair loss. And you should probably keep your pants on for the role.

Clarification on Earlier Post about Stress & Cancer

I post on a number of blog sites, and I recently posted—on all the sites I use—Art Therapy and Mindfulness Training Lower Stress in Breast Cancer Patients. Basically I posted a link to the article on HuffPost, along with the comments I left on HuffPost’s comment section. I’ve experienced some strange reactions, which I might discuss in a later post. I may have gone off on the article “half-cocked”, but I still stand by my comments.

I am not against lowering stress, using meditation, art, yoga, or anything anyone wants to do/indulge in, to feel better, cancer patient or not. I do some of these things and more, which works for me. But I must express what bothers me about the article and its presentation, (not the methods or the idea of de-stressing). Here are the first few words of the article: “Stress is especially dangerous for those with cancer — it’s even been tied to lower survival rates…”

I don’t doubt that this is true…hasn’t it been said for years that less stress is better for your heart, your immune system, your…everything? So less stress should also be beneficial to cancer patients….and some articles even note all the reasons we are stressed. Well, duh-huh. It’s like this report my friend told me about, which pointed out that women who want children and experience failed IFV attempts are often more depressed/stressed and consequently more likely to become ill and/or die than women who successfully had children. Captain Obvious strikes again. Who the hell awards grant money for this stupidity?

To get to the cancer-n-stress report I am babbling about, you have to click a few times to get to a page written in medical-ese, which is a little challenging for non-medical professionals to understand, and the casual reader is not going to jump through these hoops. They will only see the sound bites. And that is why I am worried. Those words—stress as dangerous to those with cancer—good grief. Guess what is really dangerous? Cancer!! Know what makes cancer patients stressed? Cancer! Know why cancer is so stressful? It kills!! How about I point a loaded gun, safety off, at your head and tell you to not be stressed?

My point is that it is natural to be stressed in a stressful situation, and in the beginning I felt an unreasonable pressure to be a “good cancer patient” as a result of interactions with people I know and exposure to various news articles constantly lecturing why stress is bad and how to get rid of it as if it were unnatural, and that all of human society must collectively strive to obliterate, not just alleviate it. I used to watch that show Charmed, about three good witches charged with protecting innocents with their magical powers. In one episode they upset some cosmic balance and every one had to be happy all of the time, and the merest hint of an expression of a slightly negative emotion could get a person arrested/killed…except the characters could not talk about death, because everyone was acting like it did not exist.

Sometimes I felt like that television episode in Cancer Land, especially the cancer swathed in the cheery pink ribbons. When assaulted with this don’t worry be happy attitude, I felt as though my legitimate emotions were being dismissed—that  I was being dismissed for not getting on the rah rah train. I no longer feel this pressure, because mainly it was self imposed because I thought I needed to fulfill everyone else’s expectations. Now I feel: fuck your expectations! I am ALLOWED to feel the bad along with the good, and so are you. I know I am not the only one who just gets more stressed when told not to be stressed. For a much better expression of this concept (because I think I am starting to suck here), please check out The Human Side of Cancer, Jimmie C. Holland, M.D., chapter 2, The Tyranny of Positive Thinking.

But worst of all, those words, stress is dangerous to cancer patients, once again suggest the notion that anyone can exert control over cancer, or life, even. One of the worst interactions non-cancer patients have with cancer patients is when “they” start asking those slightly accusatory questions…did you smoke to the lung cancer patient…did you get a pap smear to the ovarian cancer patient (which does not detect ovarian cancer, but that question was asked of my friend nonetheless)….did you drink too much in your youth/do you exercise/what is your diet like/are you stressed—to any type of cancer patient. Those without cancer wish to almost blame us, to put “us” on the other side of an imaginary line so “they” can remain safe, and therefore unlikely to get cancer. I know, I was once a “they” or an “I”. “I” thought quietly to myself, “I” do or don’t do xyz, “I” am safe, “I” won’t get cancer. WRONG! I’m sure everyone can think of that one anecdotal situation of someone so healthy, running miles every day, happy as I don’t know what, etc, and the person still got cancer. It happens, we are powerless, and the randomness and meaningless is still a struggle for me, as is the lack of control, but that is a whole other post!

The cause of cancer is unknown, which is why people still get it. And it’s nice some medical research is advocating for recognizing the health benefits of less stress—hell if it results in medical insurance coverage of yoga classes or whatever, wonderful. But what would really relieve my stress is the knowledge there will be better, easier-to-take treatments, should my cancer return. Less nausea = less stress. Less burnt skin = less stress. No more disfiguring surgery = less stress. Better yet, find a way to PREVENT cancer altogether. That is why I get so frustrated when I see a report like this, in which money and energy were spent studying something that seems so damn obvious.

Just

The Sarcastic Boob

We’re all so programmed to minimize our experiences.  I hear it a lot among women with breast cancer.  Whether it be in a discussion board or face-to-face conversation, it doesn’t take long for someone to say “I’m just dealing with hair loss” or “I’m only just stage two.”   I think there are two sides to this coin.  On one side, we know that someone else always has it worse.  And, on the other side, we’re relieved that we’re not that someone else.

Even at Stage IV I can preface a statement with “I’m just.”  I’m just taking Tamoxifen and haven’t had to deal with the horrors of chemical warfare; I have had no surgery and still have my breasts.  I just have metastasis to two spots in my spine, not every bone in my body.   I just have some spots on my lung, but not in my liver.  …

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