Month: December 2012

MRI Music

I remember when I was in my teens watching some cheesy made for TV movie in which the female lead—I guess she had cancer—had to get an MRI.  There is a scene in which her body was shown sliding into the machine with a close up on her face as the MRI noises begin and the actress looked appropriately stressed with each click as the test begins.

Fast forward to 2010, in which I am scheduled to get my first MRI. My aunt had her first one a few months prior, and was so nervous that she was given some anti-anxiety drug before the actual test. In addition, she had ear phones with some mellow music to listen to as she underwent her test. A few others besides my aunt offered me comfort in the days leading up to my first MRI. I was assured I would have music in earphones so I could block out the unpleasant sounds of the MRI.

I’ve had 3 MRIs by now, in a couple different medical facilities, and have not once been offered any kind of music to block out the noise, nor do I need any calming drugs. I think my medical team’s attitude is “don’t make a big deal about it, and the patient won’t notice.” Maybe that would be true if I did not have all these other influences around me.

But no matter. I do not need the audio distraction. You see, as a fan of punk rock, hip-hop, rap, electronic music, and who know what else, the MRI noises do not seem all that strange or threatening to me. I don’t think I realized this until my most recent MRI earlier in the year. I had spent a few weeks listening to nothing but Public Enemy, realizing they sound so wonderfully like the end of the world. The glorious cacophony of PE, and of abrasive industrial bands Ministry and Nine Inch Nails, and countless other bands, adequately prepared me for this particular aspect of the cancer horror show. Better yet, I saw lots of those bands live in the 90s, and it is safe to say that much of my hearing is shot (yes there are limits to how loud music bands can play their music, Ministry always exceeded those limits). So while I lie face down with my breasts in little wells in the table, like some damn cow about to be milked, I do not need to hear that Enya style shit or to imagine some green meadow. That ain’t my happy place. Rather, I get transported back to the summer of 1992, in western Pennsylvania, standing in a crowd of thousands with Ministry screaming “thieves….thieves and liars!” Ah, yes THAT is my happy place, a great memory.

Good to know my wasted youth finally paid off.

Mr. Darcy the Nurse

Mr. Darcy (the cat pictured in previous post) is a great example of the strange forms help can take when you have cancer. He is not my cat. He belongs to two guys for whom I have worked for about 12 years. They are clients who became friends over the years, to the point that they were also my caregivers secondary only to my mom while I was in treatment. I had to put my pet sitting job on hold while in treatment, except for these guys. During my chemo treatment weeks, I either lived in these guys’ house if they were away or the apartment above their store if they were in town (my treatment center was an hour away from my home, because the place I chose to be treated was close to the 9 to 5 I had at that time).

The night before I was to begin my Taxol infusions, I was given a bunch of drugs to prevent an allergic reaction to the Taxol. The nurses told me I’d probably be up all night, since the drugs cause insomnia.

Well, Mr. Darcy to the rescue!

When I went to bed that night, he put his overweight self (he is the quintessential fat cat, diabetic, with a problem in his back legs that makes him make a “thwamp” sound when he tries to get somewhere quickly) right on my chest. He is under 20 pounds, just barely, and he drools when he purrs. And his purrs are so loud it can actually wake a sleeping human! But, in spite of this terrify picture I am painting, he is also quite comforting. Hs purring synced up with my heartbeat, and I did not want to move, because I am the type of person who does not want to disturb a sleeping animal even if they are sleeping on me He NEVER slept on top of me before that night when I was on so many drugs and I needed his comforting presence. I slept like a baby that night…I think the chemo nurses were a little miffed…they like their advice/threats to be true, and here I strolled in, well rested as if nothing were out of order for me.

Darcy has only slept on me one time since, and that would be this past Thanksgiving, when I got some kind of 24 hour bug. He relished the chance to “defend” me against the threats in the house (two blind Bearded Collies, and two other overweight cats, including his own mother, who only wanted to snuggle with me, warm as I was). He bravely stalked the edges of the king size bed, making sure no other animal got close enough to disturb me. He begrudgingly let my mother enter the bedroom to give me ice chips, which he eyed with suspicion.

So, yeah, cancer for this curmudgeon was one giant suck, one shitty day after another. But, sometimes there were little moments of goodness, like Mr. Darcy’s idea of “care for the patient”, and the love his humans have for me, that prompted them to also take (better) care of me. Certainly, there are days and the behavior of some people I’d like to forget completely, and some memories I’ll treasure forever.

Addendum to It’s Not a Trade Off—Better Me Than You

See, what I withheld from the It’s Not a Trade Off post (a few days ago) is that my own mother, who was my primary caregiver during cancer, went for her annual with her general practitioner. And he found a lump near her stomach so she had to have a CAT scan and we are still waiting for the results…for the holiday. With a sister and a daughter having just gone through Stage III cancer each, and one with a recurrence, the odds are not in Mom’s favor. The fact that I’ve had cancer does not give her the free pass, it only seems to increase the likelihood that the news will be bad.

So you see, this is why I have no patience for the “glad I had it rather than my loved ones” It doesn’t work.

Yes, I realize I am jumping ahead and creating worry that may not be warranted. But life taught me to expect the worst, well before diagnoses. Cancer caught me off guard once. Never again.

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.

 

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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