Tag: cancer

Personal Change Or Corporate Cultural Change

I’ve gone off quite a bit on my blogs about my annoyance with the suggested measures for reducing the risk of cancer. There was always one point percolating in my mind about which I would not write, because I was not sure how I could make the point, or if I even had it correct in my mind.

Let me backtrack a moment to my high school days. I am a Gen Xer, taught almost exclusively by boomer ex-hippies in my public school. My teachers were the “get out in the street and protest” sort. I never, ever forgot one of these teachers criticizing the environmental movements of the time. This teacher pointed out that the politicians of the Earth Day era put the burden on the individual to recycle, reduce, and reuse, when it was, and still is, more effective if big industry would change their practices. I’ll never forget that, and while I do recycle, reduce, and reuse, it has always been in the back of my mind that my little pea-pickin’ actions were nothing compared to what is needed, and could be accomplished if various industries were monitored and properly motivated.

A couple of weeks ago, I came across an article called Forget Shorter Showers, which essentially said what this teacher said so long ago, but with a lot more facts and stats to prove the point. It gave me the inspiration to explain the story above, and to ask: how does this apply to cancer? Well, I suspect it may apply quite a bit.

It seems most articles I see that discuss causes of cancer, or ways to reduces risk of cancer, I read the same tired litany of suggestions: exercise, eat right, don’t smoke or drink (you know, the same suggestions thrown out in discussions about heart health, and nearly every other BIG AILMENT). It is much more difficult to find anything saying don’t use product X, it contains a massive amount of carcinogens, or move away from (some random area), because (X corporation) factory is pumping tons of carcinogens into the air/soil/water. No, the onus is always on the individual to do what he or she can to reduce their own risk. Granted, journalists cannot point a finger at a brand name and/or product and yell “cancer causing” unless there are proven facts supporting it—otherwise it’s just slander—but why is there no urgency to research suspected products and their cancer-causing ingredients in the first place? Why are the harmful chemicals in ANY food or product in the first place? How are these industries that can cause so much environmental damage allowed to continue to do so?

Sure, I can eat right and exercise like mad, and maybe forsake my beloved wine. But is it a guarantee that I will not get cancer again? Well no, because I have to breathe the air, use products with carcinogens, etc. So much is out of my control, and the corporations (corporations are people too, yuk, yuk) have nothing to keep them accountable. And keep in mind, “eating right” is not easy as it seems. So many food-as-cancer-prevention articles suggest eating organic; in other words, spending money many don’t have on products that are hard to find, perhaps unavailable. Hey, not all of us breast cancer survivors have the disposable income to spend on organic foods. And again, why is the onus on the individual to seek out the “better” food, yet there is no pressure to eliminate the harmful products in all food?

The article states that “we’ve been victims of a campaign of systematic misdirection. Consumer culture and the capitalist mindset have taught us to substitute acts of personal consumption (or enlightenment) for organized political resistance.” I think this misdirection extends to conversations about factors that cause and/or prevent cancer. The fact is we KNOW that industry has no problem putting harmful things in any and all products, or to wreck the environments in which they operate, don’t we?

Finally, the other day, it seems as if all the things I wondered about are about to get more attention. I got the email notification so many others did from Breast Cancer Fund about a report called “Breast Cancer and the Environment — Prioritizing Prevention”.  It seems a few influential folks are realizing that not enough breast cancer dollars are going to prevention and the study of environmental causes of the disease. According to a New York Times article, the environmental factors in the report include the “old standards” (eat healthy, no alcohol, etc.), but I’m glad it at least it acknowledges all the other factors, the ones that the individual cannot control. I hope this report continues to get more attention in the mainstream media, maybe even those silly women’s magazines I see at the check-out line at the grocery store, the ones that tout some random food as “preventing cancer” on each new cover. It would be refreshing to see headlines not dragging out the tired “eat this, don’t drink alcohol” headlines to sell magazines.

While I am ecstatic that there is “official” confirmation of issues I think need to be corrected in the conversation about breast cancer; as in that prevention is more important and that there just has to be more or bigger factors at play than love of wine and hatred of tomatoes causing my cancer, I know this is just a baby step. Getting industry to stop using cancer-causing toxins, holding corporations accountable, enforcing policy, all this will take time and energy.

The Breast Cancer Fund encourages the public to get involved and write to the U.S. Secretary of Health and Human Services regarding the action plan to be implemented based on this report. I, for one, will be doing this because I think there needs to be a large organized effort (involving groups of people, not just individuals) to pressure industries to stop putting cancer-causing toxins in the air/soil/water/damn near everything. I also think things like organic food should be the norm, not the expensive exception, available only to a few.

There are so many pieces of advice out there in print and on the web saying that people are more likely to survive cancer when they have a strong support system. I hope all those folks who support people in treatment can find the time to create a support community in favor of this shift in the conversation about cancer from treatment prevention; I’m tired of it being an individual responsibility.

It’s Only Weird If It Doesn’t Work

This is the rare post from the ol’ Cancer Curmudgeon in that it is not cranky and complaining. I daresay it will border on hopeful and magical, maybe a little silly. Blame it on local pride, I OD’d on it watching the Raven’s celebration parade yesterday.

Despite my post of the Ravens logo minutes after their Super Bowl victory, I am not much of a football—or any sports—fan. In past years, my primary interest was just the half time shows, and of course, who doesn’t love the commercials. But during cancer treatment 2010-2012, I was hungry for distractions; books, TV, or any kind of pop cultural entertainment (bless Charlie Sheen in winter of 2011, the ultimate distraction). And the Super Bowl, the way it is the defining national event, especially fit the bill.

I’m Maryland born and bred, so my obvious allegiance is to the Baltimore Ravens. And as a bonus, the team name is a reference to one of the greatest poems of all time, written by one of the greatest American writers. A macabre poem written by a drunk who married his underage cousin doesn’t seem a likely inspiration for the name of team in a sport like American football. Guess that is why they were underdogs, another thing I like about ‘em!

During cancer treatment I became aware that the Ravens seemed to have a knack for getting almost to the Super Bowl, and would lose that final game that could send them there. For the past two winters I grumbled if only they would just win that last play-off game and at least get to play in the Super Bowl, that would be cool, I could live with that. So, when the season started last autumn, I kept an eye on the scores, something I’ve never done in my entire life!

Before I continue, indulge me in a small detour into my twisted mind, so the rest of this post will make even less sense and get weirder.

Weird Thing #1:

Long ago I read “Animals as Teachers and Healers” by Susan Chernak McElroy (whose blog I just discovered, hurray!). In the book (or perhaps the one she wrote right after that, I read them over 10 years ago) an interesting concept is discussed that essentially boils down to this: a cultural belief that the rooster crows because the sun comes up and the sun comes up because the rooster crows. No, it does not make any scientific sense, but it is a fun and interesting concept anyway. I know how the earth revolves around the sun, giving the illusion that the sun “rises” each day, regardless of any earthling’s behavior. I also know absolutely that if the rooster did not crow, the sun would not rise. Odd thing to come out of the mind of the cranky pants, atheist mind of the Cancer Curmudgeon, yes, but it is true, I believe it.

Weird Thing #2

Apparently, a theme of this year’s NFL season was fans and how they support their teams: “It’s Only Weird If It Doesn’t Work”. I did not know that until I saw a news segment of the same name, previewing that Stevie Wonder Super Bowl commercial and showing clips from Silver Linings Playbook, in which Robert DeNiro has his son (Bradley Cooper) or his son’s friend (an amazing Chris Tucker) hold the TV remote in one hand and an Eagles scarf in the other, slowly rubbing the scarf. The point of all this is that fans have these little “habits” that they believe will help “their” team win. The behaviors aren’t quite symptoms of OCD, but they certainly look like it. Hey, I have OCD tendencies and I am proud! And yeah, I wore my 2012 Ravens t-shirt from early Sunday morning to Monday morning—never ONCE removing it. Stop laughing, they won didn’t they?

Because my interest in following football started while having cancer, the two things became entwined in my mind. As the Ravens recently approached the final play offs once again, I approached my 6 month cancer check- up. I’d been doing well since my July check-up, much like the Ravens were beating the 49ers until half time. On January 14, the mammogram and ultrasound showed an “area” to monitor. I worried I might be in danger, that cancer was sneaking up on me again. After the black-out, the 49ers began to creep up on the Ravens, like my cancer. January 21, after this close shave, my visit with the oncologist tells me I’m still doing ok, status still NED. The 49ers crept up on the Ravens, but ultimately the Ravens persevered, and were victorious, just like me.

My next words may be crazy, brace yourself. It is just like the rooster crowing to cause the sun to rise each day.

My all clear from the oncologist earlier this month caused the Ravens to win, and conversely, the Ravens’ win means I will remain NED this year. No, it isn’t weird, because it’s working. And it is why this Super Bowl meant so much to a non-sports, non-superstitious person.

And now, the next post will return you to your regularly scheduled snark and crankiness.

That Every Six Months Thing

Well it is that time again; my every-6-months-appointment with the oncologist to monitor my post-cancer body is over, and I can breathe for another 6 months. I kind of hate this 5 year time line in which I need to see the oncologist this frequently; it’s not like I will magically be off the hook after 5 years, although I recognize the statistical probability that it is more likely to come back within 5 years than after. Yadda, yadda, yadda.

My fellow IRL post-breast cancer patients get mammograms every 6 months, just prior to their visits with their oncologists, from what I understand. I only do it once a year; at the other 6 month point I get an MRI. I had to fight a little bit to set this up. When my doctor was explaining my schedule and telling me I’d have mammograms every 6 months, I had to push on the brakes, and ask if some other form of imaging could be mixed in, due to the fact that my first ever mammogram was a false negative. Immediately, he went into the canned speech of a mammogram every 6 months being the protocol or standard of care or standard operating procedure or whatever they call it. I was like, yeah, I fell outside of the norm in diagnoses with that false negative (only 20% get that), and we need to think outside the box for my care.

Sigh. I know the medical world, and most worlds, are constructed to come up with a plan for the majority—majority rules! But there are just some instances in which the plans need to be tailor made for an individual. I think cancer falls into that category. My doctor is wonderful; I know he cannot keep track of all the details of each of his many patients. I just wish he would put a little sticky note on the outside of my file that summarizes the big points of my case, like the false negative point, so he could remember that. It was certainly a big sticking point for me—to think all is well after that milestone of “my first ever mammogram” only to find out a few weeks later that all is extremely far from well was a real kick in the ass.

The first post treatment mammogram I had last January was not too harrowing; I’d just finished the Herceptin infusions, I’d been seeing someone in the cancer center every three weeks, so I was not worried. I was not even real concerned when I had the MRI in July; it was clear, and I was pretty sure it would be. I’ve been told one gets a little “antsy” when emerging from that cocoon of constant cancer care. Since my cocoon lasted much longer because of the year-long Herceptin treatments, I experienced less of that, I think. But I do get uptight now when the 6 month time bomb approaches.

Naturally, this time round the mammogram had to hit some bumps in the road. I went to the same facility to have this year’s mammogram as the previous year, and the building is literally across the parking lot from the cancer treatment center, I’m talking a few yards. Yet, I was asked by the technician my entire cancer history. I say to her “You know, I’ve been here before, post treatment, even! This medical group/hospital system/whatever has all of my records. I did not bring my own cancer notebook full of dates and details because common sense would imply that this facility would have all of this info.” I was annoyed because she was making assumptions that there was a long lapse in time between first mammogram and diagnoses. Finally, I just recited my general timeline, and I emphasized that 1) it was about a month between the “all clear” and the “you have Stage 3 cancer” messages I received and that 2) it was this facility that gave me that horribly incorrect “all clear”.

But getting these facts out in the open was a good thing. The technician was a fellow false negative breast cancer patient herself, which put us on the same side, she was truly sympathetic to my story. This was a great improvement over the technician last year, who kept opening my robe (I prefer to open it myself, I do not want them to touch or remove my clothing, or in this case, cheap-ass institutional covering), then stopping to yammer about breast health rather than putting my breast in the machine, letting me just stand there uncovered.

Now, I don’t know if it was the fact that I was clearly not a fan of mammograms or if the Interpreting Radiologist (the unseen person, who sends the technician in again and again to re-take the image, I guess they are the great and powerful Oz?) was truly having a difficult time getting a clear image, but images of my left breast—yes, the one that had the surgery, the scar, the one that hurts—kept having to be re-done. It was excruciating. Finally, it was decided an ultrasound was needed.

While I understand and respect the need to have a better look by getting different types of images, it was still frightening. My experience of breast cancer world is, if more images are needed, there is a problem, no matter how many times the technicians assure the patient that taking more images does not indicate a problem.

So I wait a nerve-wracking week after imaging to discuss this all with my kindly oncologist. The night before my appointment, I open my results from the Interpreting Radiologist, telling me there is an “area” that is “believed to be benign”, but I should follow up with another test in 6 months. It is a form letter, it does not take into account that I am a damn cancer patient, I have to be tested in 6 months anyway, regardless of what she saw. I know these letters are just the way radiologists are covering their asses these days, so they can go back and say, “hey we informed the patient of the findings, it’s now all on them”. I get it, but it still sucks to get that letter.

But all’s well that ends well. The visit with the oncologist reveals that blood test showed my cancer marker to be decreasing since the last test, and the offending “area” is scar tissue and/or a mole. So in other words, my status is still NED, and that “area” will probably always be a problem. So it was much worry for nothing. But I am glad it was nothing. I will always rather have the stress of extra testing with an end result of “all clear”, than skip the extra test, get bad news later, and forever wonder if finding out earlier would’ve been better. I grimace every time I see someone comment on a blog about how stressful it was for them to get an “unnecessary” biopsy, that the medical staff are over-testing (which insurance companies think is happening, even when it is not), the “agony” they went through to get the negative results. I always write back: “you want stress, try going through the week of waiting to get the classic ‘you have cancer’ answer, then we can talk about stress.” I even kind of had to say those words to myself this time round, after getting that extra test for “no apparent reason”. Better safe than sorry—wow an old cliché that is very true!

Prince William, Osama Bin Laden, & Me

I’m not especially good at remembering dates anymore. Some of my cancer dates I remember, some I don’t. I have no idea when I began chemo other than sometime in November 2010, but I know my last chemo infusion was April 8, 2011, and that my last Herceptin infusion was Jan 13, 2012 (a Friday the 13th, whoooo). I was elated to be finished with radiation, but I will never remember the date of my last one, although I know it was an incredibly hot Friday, the final week of July, so hot that I did not mind walking dogs in the pouring rain late at night because I was so hot and sweaty I just wanted to take a shower. An outside rain shower was totally ok.

This means any Friday the 13th  is lucky for me, not unlucky.  And any incredibly hot day, I will link it with a cancer memory. Curse you climate change…all these damn hotter days!

The weirdest memory however, will be related to my lumpectomy: April 29, 2011, the day Prince William married Kate. I am not fond of the Royals, and the wedding was not of interest to me, but I was forced to watch it, getting up so early for surgery—it was the ONLY thing on. That day was one of the worst of my life, and the laugh I got out of Princess Beatrice’s hat did not alleviate it all.

That day, my surgery was scheduled for 10:30 am, and I had not eaten for over 24 hours, and of course I was required to be at the hospital at 7 am—classic cancer hurry up and wait. A couple of emergency surgeries pushed my time back to 3:30 pm (apparently my surgeon is the only one who could do it? I cannot fuss, she is good and if I had an emergency I’d want her). I am not the most pleasant person when hungry. Not that it mattered much, because the surgical nursing staff pretty much ignored me. There were two magazines to read, nothing to do but worry, and all the fluids given to me via IV to keep me hydrated made me need to pee, which is quite a job when prepped for surgery with a million tubes attached to limbs. If that were not enough, it was discovered the person who did my ultra-sound-guided biopsy for my initial diagnoses failed to put a “marker” near the tumor. Since chemo worked so well, there was no definable tumor left, making it doubly difficult for the surgeon to figure out exactly where to operate. So I was stuck getting repeated mammograms to make sure there really was no marker in there. What fun. And then of course came the six needles in the nipple to put the dye in my system. It was the single most painful thing yet—physically, mentally, and emotionally.

It is now odd how much I am forced to remember the days of and following my surgery. For example, Princess Kate’s recent pregnancy that got all of the internet and news outlets in a tizzy for several days this summer sent me down memory lane. My first reaction was, they have only been married a few months…and then I realized it was over a year…same amount of time since I’d had surgery. Time flies when you’re having cancer.

But the single strangest reminder came a few days ago, watching Zero Dark Thirty with my mom. The film puts important dates on the screen, including the day the SEALS killed Bin Laden, May 1, 2011. Mom turns to me and says “do you remember all this happening?” *Note: Let me explain my mother is not interested at all in history or current events, or even pop culture current dramas.

Well, yeah I remember the news of Bin Laden’s death! It was an important enough event that even though I was drugged, in pain, and annoyed at the stupid drains under my arm, I was very aware of what happened. In fact, I kept trying to watch the news in the days that followed, but I do not do well with anesthetic, so the crawl on the bottom of the TV screen made me sea sick. I feel like I got cheated of this American moment because I was too sick to see it on TV. When I say all this to my mom to put the event in context for her, she gets huffy and says she does not remember because she was supposedly taking care of me (I actually needed little help at that point, whatever, ha ha).

I honestly don’t know if this way of remembering is good or bad. On one hand, something like a triumphant moment in history is linked with a very bad memory for me. But with chemo brain stealing my ability to remember things, maybe having these shortcuts to my memory is a good thing. Who knows.

Some Updates

In the past few weeks I posted pieces on why I blog, and why I’m doing it now rather than when I was going through treatment. I guess the last part should be an explanation of why I am a self-proclaimed cancer curmudgeon. I’ve updated my “About” section to shine a light on my current philosophical stance toward (breast) cancer and the American medical industry (the curmudgeon part). And what follows below is an expansion on that

Above all, I’d like everyone to know that I am grateful for staying alive during cancer, for the drugs (made possible by research dollars from the pink ribbon behemoth) and health care team that keep me that way, and all the support I got and still get. But I do not think being grateful means that I, or anyone, should stop asking for improvements in cancer care and prevention. I demand of science more concrete cancer prevention methods than the “eat right, exercise, don’t drink or smoke” mantra that also helps prevent practically every damn human disease. I think it is ridiculous that the recommended action for a woman with an increased likelihood (like a gene mutation) of getting a gynecological cancer is removal of woman parts. I mean, if I had a gene mutation making me likely to get brain cancer, should I remove my brain? An absurd extreme, yes, but see my point? I realize that cancer is a complex, difficult to understand illness, but after thousands of years of knowledge of a malady we now call “cancer”, science should be further along in the understanding of it all.

*Note: Dude, I’m not even going to follow a thought about how often prostate or testicle removal is performed in comparison to female reproductive organ removal FOR PREVENTATIVE REASONS, because I know it will involve a lot of figures about which cancer occurs more often, and numbers about why science researches one over the other, women’s vs. men’s health issues, blah, blah, blah, so I went with brain cancer in my example—cancer has got to stop dividing men from women, we already feel the healthy-from-the-sick division too much.

I know things like gene testing and radical surgery are the only tools in the box the medical industry has to use against cancer right now, and the industry, as well as patients, want to be proactive….testing and surgery give the illusion of “doing something.” So I understand why the test is sold as something that can provide more info for people like myself, who like to gather as many facts as possible before making decisions. But transparency is in order…like if an oncologist recommends Tamoxifen for 10 years, up from the current recommended 5, to a patient, the patient has a right to know that the study that recommends this was funded by AstraZeneca, makers of Tamoxifen (full disclosure, since I was EP negative, I have no self interest in the Tamoxifen debate, just a personal one, as I researched it on behalf of my IRL cancer buddies, because I want to fight to make sure my friends get the best breast/ovarian/female cancer care available). Women who plan to take the BRCA test need to know how rare gene mutations are, and need to know that the mutations only increase risk of getting cancer, the mutations are not the cause (only if they combine with a bunch of other stuff, like environmental factors, which hurt and cause cancer in everyone, not just those with gene mutations).

All I’m saying, is how can I help add tools to the cancer-fighting toolbox? Other than donating money, because cancer has all my money now.

The Age Divisions

When I was first diagnosed a few days before my 39th birthday, I concentrated on just the big picture of breast cancer, and I did not really pay attention to issues of age…at first. I was lucky to be treated at a facility that, despite its location in a small-town and rural area, was evolved enough to have a resource for young adults with cancer. A special support group was started for us by my friend, diagnosed a few years earlier with ovarian and uterine cancer. Joining support groups is so the opposite of my personality, but I am so glad I joined this one. It helped offset the annoyance I still felt going into the infusion room and seeing the looks of surprise given by my fellow patients as they watched me, not my mother, sit in that chair each time (even though I was the bald one, go figure).

As I progressed through treatment and began interacting with the others in our support group, I have researched a few resources outside of our little local circle for “young adults with cancer”. There are some cool things out there, like Huffington Post’s Generation Why blog, Stupid Cancer/I’m Too Young For This! Foundation, and First Descent.

But I wouldn’t be the Cancer Curmudgeon if I did not have a complaint. Generation Why is a play on “generation y”; naturally I am “generation x”. First Descent and events produced by Stupid Cancer are for anyone with cancer ages 13-39. Since I was going through treatment the entire time I was 39, and I worked while in treatment, I did not have much left-over energy or vacation time for anything like that. Hell, even the SCAR Project, which I admire greatly, had a limit of age 35 for participants. So does that mean, since I am 41, I am no longer allowed to be a sexual being, upset at the scar and lack of nipple that cancer left me? I do not think this, but it seems that “society”, or certain organizations, or who knows else, is putting these parameters in place, once again trying to fit cancer experiences into these little boxes.

Cancer sucks no matter what number of years you’ve walked this earth. Maybe people should not be reduced to age brackets when it comes to cancer. At 41 I should be at a certain place in a career, married with 2 kids? Nope, I don’t fit the “profile”. No kids…so the worries of informing my kids, raising kids, and worrying about their future without me does not apply. But I am single and would like to find a husband, and hell yeah, I am worried that my “damaged goods” are going to impact my chances of finding a one, a problem I see discussed in articles targeted to those in their 20s and 30s. In addition, I am certainly nowhere near retirement, in fact, am still searching for my “perfect” job. In short, I know what my particular challenges are, and there may be someone out there in the same or a similar boat, or maybe not. I’m sure lots of patients cannot imagine facing my set of circumstances, the same way I am baffled when I read other bloggers’ posts of trying to go through college while in chemo, some without family support.

Look, I am not poo-pooing these resources I’ve mentioned, I am grateful they exist. I sort it out as I research & read, and just try to take what applies to me and move on. I know that the medical community and these various organizations have to create these age brackets in order to do the testing, compile data, and create their target markets. I especially would like the medical testing industry to expand their vision to include testing and results for each and every age bracket, so treatment can be improved and prevention discovered. It’s all about the stats and the odds, I know.

I just want everyone, especially the number-crunchers, to remember that the one common thread in cancer patients no matter the age is that we all want to survive and live well, and that there is a person behind each number or stat.

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.

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.

 

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.

Me

tumblr_me3or4dk2x1rlpicfo1_500

when people would rub my shaved head, without asking