The Line

I, and many others, have often spoken of the fears that haunt cancer patients upon completion of treatment. Every little ache, twinge, hangnails even, can induce great fear in a cancer patient: “Is this a sign? Is this cancer coming back?”

For the most part, I’ve been capable of knowing when something is just a normal issue, not a signal that cancer has come back. The first time I had a little 24-hour flu after cancer, for example. It was weird, to have such a normal episode of nausea and vomiting not related to chemo. (Unluckily for me, this episode happened right after having a large Thanksgiving dinner—geez, of all the lousy times to get sick…) I know when I’m having allergy problems rather than a cold; I know that even though I’d never had a UTI prior to last fall, I knew it was a simple thing. I felt pretty secure that none of these minor illnesses signaled the return of cancer.

In short, I’ve remained on this side of my imaginary line that divides normal illness or signs of aging versus abnormal symptoms that indicate I need an oncologist. That is not to say I am or ever will be “over cancer”, I know the risks, the likelihood of recurrence and that I am not “all better”—unlike those folks who like to tell about their friend of a friend who had a little cancer that one time and now she’s “all better”.

But I have lost sight of the line lately. Or maybe I keep jumping back and forth over it, or I’m straddling it.

When I had my suspicious mammogram last March, I found myself back in that place of cancer terror, the place I occupied upon diagnosis. I had a brief reprieve after the MRI proved the suspicious area to be scar tissue and not a tumor. I breathed easy, thinking I’d dodged a bullet this time. But every health blip I’ve had since then has sent me over the edge—especially since it all seems ongoing and whack-a-mole; each time a symptom is quashed, a new one pops up.  All remains unresolved.

Given my history of medical professionals misdiagnosing me (my first mammo was all clear when really I had a giant cancerous tumor; I was told I had shingles when really I had a staph infection), it is hard for me to trust my GP when she tells me stress has made my muscles contract to simple muscle spasms causing my limb/finger/toe numbness. How do I know it is not something more sinister? If not cancer, perhaps something just as serious and catastrophic?

How do I know or trust that that my issues are not something more serious? I’ve lost sight of the line—the line that says trust the doctor that it this problem is not serious versus advocate, push, ask for tests that prove my worst fears.

I’ve been living in that dark hole of fear and terror lately. I’ve not been communicating or writing much, I just cannot focus when my mind is busy contemplating the horrible possibilities. I don’t like being in this place. I thought I had my post-treatment blues, my walking-with-fear-of-cancer’s-return in hand. But I do not.

So back to the drawing board. Back to counseling. I’m angry at myself that I took one step forward and have now taken several steps back.

Because Sunday

Because Sunday

Last year National Cancer Survivors Day was over before I even knew it existed. I kind of shrugged it off. This year I was alerted to its approach via social media. And this year I’m decidedly not enthused about it.

I see the website, with tidbits like: “On Sunday, June 1, 2014, cancer survivors across the globe will unite to show the world what life after cancer looks like.” (Aside: that confuses me—is it “national”, which nation, but the around the globe quote seems it should be called international day????) Or, the tidbit mentioned on other blogs that the day is show life after cancer can be better?

Admittedly, I’m in a very bad mental space lately. Since March, I’ve had one health issue after another, starting with a suspicious mammogram that led to a relieving MRI that showed no evidence of recurrence-at least in my breasts. But after that it’s been other health issues, drugs with bad side effects, or maybe not—still trying to figure out what is going on with me. Meanwhile, I feel crappy, and I am torturing myself that all this indicates cancer is back somewhere else. I felt kind of “blah” the summer before I was diagnosed. And yes, I had that clear mammogram a mere 5 weeks before I was diagnosed with a big ass tumor that first time. So sorry, but I don’t have much patience in this process of trying to figure out my health problems without considering what I fear most.

So I’m not up to showing the world what life after cancer looks like—for me, it has been just riddled with fear, anxiety, and panic. Even if what is happening to me now is not recurrence, the fact I’m having such a difficult time tolerating or resolving new, other health issues just shows how much cancer has damaged my body—made me weaker and not as able to shake off what someone my age who has not had cancer might be able to do so easily. No, I don’t think the folks behind this event want me as a poster child for what life after cancer looks like. I wish I did look and feel like those smiling people in the survivor pictures, swimming, being active, oddly resembling ads for feminine hygiene products. Oh yes I went there.  I may feel terrible, but I can’t stop my sarcasm.

As for that word survivor, once more for those in the back row—I do not consider myself a cancer survivor until I die of something else. I do not use it because my friends with Stage IV are not “losers”, and they are too often shut out of the rah-rah survivor discourse. I’ve written about this, and other cancer labels and language many, many times, so I’m putting links below to some of the ones I remember—I’m sure I’ve written about it in other posts that I’m just not remembering.

One final, parting shot thought: I’ve been merely re-posting old pieces lately. Yes, I’ve been too tired and feeling too crappy to write much. But that is not all. I find that I still feel mostly the same about all these issues. My mind has not changed too much. I used to think if I just kept writing and talking, the conversation about cancer could change. I no longer think that. I merely hope that at some point, the world will see there is not one single, happy story of cancer, there is not one “THE way” to do cancer (I’m thinking about that TV news person who introduced the clip of the dancing mastectomy woman by proclaiming her dance as “THE way to do cancer, folks”). At some point, I hope society will understand that there are thousands (millions?) of cancer stories out there, and no two are alike. And none of them are wrong. Taken together, they are the real, whole story of cancer.

What Do I Call Myself?

The Other Other Language of Cancer

Why This Smart Ass Does Not Kick Ass

The Curmudgeon Formerly Known as Cancer Patient

You. Are. Scaring. Me.

Attention all medical professionals–doctors, nurses, especially those working in imaging facilities: your questions frighten me.

I used to think MRIs the most serious and nerve wracking of all imaging tests, but now I think ultrasounds are just as bad. I’ve had a few of those–first to find my breast cancer back in 2010, then all throughout treatment in 2011-12, to monitor my heart’s reaction to damaging cancer treatment drugs. The ultrasounds for the heart weren’t so bad; maybe because it was so clear to the techs why I needed the test. But my first breast ultrasound was pretty upsetting. Lots of questions, bringing in other techs to view the images, and just a general atmosphere of “something is wrong”.

The same things happened today as I had to undergo an ultrasound to find out what my worse-than-a-UTI problem actually is. As she applied the gooey wand, the first tech asks have I had many UTIs? (No, my very first was last September, and the second wouldn’t go away it seemed, and that’s how I wound up here.) She brings in the second tech.

I understand the second person is needed, in fact, I think my first tech was an intern who needs her work checked, even if she performed her tasks correctly. But I’m sure “Seinfeld” or “Friends”, or both, covered that issue of having something so bizarre or serious that other medical personnel want to see it. It was funny on those shows, but not funny in real life.

So the second tech begins waving the gooey wand and watching whatever images the inside of me put on that screen. “So have you had kidney stones?” Great, another question.

NO!

“Your questions are alarming me,” I said as matter of factly as I could.

“Oh we just have to tell the radiologist what you say–he’s gonna ask about it,” she chirps.

“But you are not recording  my answers,” I pointed out. Please, I cannot remember whatever I want when I enter a room without making a list these days. I do not expect any medical professional, with a million patients running around, to remember one darn thing. So, please, jot down my answer when you ask me a question, especially if you claim the info needs to go to another person.

Dead silence. Did not even bother to answer me.

I admit, I’m a naturally anxious person and I tend to let even simple things ruin my day, my week, my month. And a health concern is not a simple thing. So I’ve walked out of the hospital today completely worried. I’ve no idea when I can expect to learn about my results. Yes I have a follow up with the urologist in 6 weeks–but that is if all went well with this test today–and I don’t think it did.

It is possible I am imaging problems where there are none. Maybe I don’t like ultrasounds because the person administering the test is so close and I’m trying to “read” them. I cannot help myself. So when I’m asked if I’ve had recurring stones or UTIs, all I can imagine is that they are thinking stuff like: “OMG, her kidneys/bladder are a mess. How could she go so long without problems? Why did she not get to a doctor sooner?” And of course, as a cancer patient, even though no one has said “cancer”, I cannot help but wonder if they are thinking, “look at that huge tumor.”

In short, the questions scare me.

In addition to my own self-made panic, another, more logistical concern grips me. I realize that the urologist (or whatever doctor) writes an order for a test, but why is the other, relevant information not communicated to the poor sap who has to look at the images, interpret them and report findings back? Shouldn’t the people making and analyzing the images know what is going on with me? As in why on earth are they looking at my bladder and kidneys? What are the symptoms or concerns that put me in that room with them? Is this some kind of freakin’ treasure hunt or detective game? It’s as if the doctors are saying, here, look at this person’s organs and see if you can find anything wrong–but we’re giving no hints.

I confess this is a rather irksome issue for me. I cannot help but think back to my very first mammogram, that resulted in a false negative. I know, I know, I should let that go–after all, the tumor was discovered just a few weeks later, and I lived, so I should shut up about it. But humor me. I went to get that mammogram not because I had any symptoms, but because I had a strong maternal history, because my aunt was just diagnosed at age 50–a below average age for breast cancer. I was 38, below the current recommended age for getting annual mammograms. I was being proactive. So did the radiologist see my age, know the family history, and just blow off that big white spot as density, when it was really a tumor anyway? Or did that information not reach him, and he just saw 38 year old white female with no symptoms, and maybe he thought–oh they always have dense breasts, no worries? And please know, the tumor was not hiding IN the white area, it WAS the white area. As mentioned if previous posts, I have trust issues when it comes to tests and such, and this is why.

I know it would not change anything to have been diagnosed a few weeks earlier. What happened, happened; and I am still here. Maybe I’d be a little less angry, who knows? I am curious to know if background history gets communicated to imaging personnel, and if it is factored in. If it isn’t, um, is there a petition I can sign to change that? Maybe some patients think all that information sharing between doctors and medical facilities is invasive. Not me–I think of the very thick file that followed me at the infusion center, I think of all my discs containing images from various facilities. All of that is me, my story, and I have no idea what parts are relevant for this moment, this particular problem. Is that not why my records exist…in recorded format?

So, again, to those doctors, nurses, imaging techs: asking questions–and worse, not answering them, and how you behave, even your face, I’m over analyzing all your actions. Maybe most patients do that, maybe not. As a cancer patient, well, these situations take on a higher terror level for me, and I’d guess many other cancer patients. It doesn’t matter if YOU don’t say cancer–I’m thinking it. And even if it isn’t cancer–well, I’m in a center, getting a test, I’m thinking the worst. Please understand that.

And I walked out of the hospital today frightened.

Superpowers

In the 1994 film “The Crow” the late Brandon Lee’s Eric Draven comes back from the dead with superpowers to exact revenge on the gang of men who killed him and his fiancée. There is a scene in which he places his hands on a villain to make the villain feel all the pain he and his fiancée felt, which ends up killing the villain if I remember correctly.

I don’t wish cancer upon anyone. But if I could have one superpower from the world of comic books (although “The Crow” is considered a graphic novel, but I’m not getting into that), this is the power I want to have. Not the power to fly, be invisible, shoot webs from my wrist, or do whatever the hell Aquaman does (“Aquaman sucks!” –Raj, on “The Big Bang Theory”). I wish I could somehow transfer all the fear I’ve felt since 2010 to those who criticize preventative mastectomy as being fear driven, so they would KNOW fear. Come here honey, let me tell you the story of fear and cancer. And while we’re at it, let me remind you I did not have a mastectomy, I was able to do lumpectomy, but I know damn well not to judge another’s medical decisions, just as everyone else damn well better not judge mine. It’s called empathy, look into it.

Oh, BTW, y’all already knew I’m The Hulk, right? Ha ha. Always angry, trying not to smash everything.

Image

FEAR

I’m sure anyone remotely interested in breast cancer has seen and read The New York Times Magazine. Heck, I reblogged it as a part of ihatebreastcancer’s blog and additional comments. It’s like a reader’s digest version of nearly every article or criticism of breast cancer awareness/marketing/issues I’ve read in the past two years, and I am sure anyone reading this blog is familiar with nearly everything in the article—before even reading it. But that is because we seek out info about breast cancer more than the average Jane. Perhaps the good news here is that this piece is in a non-cancer oriented magazine, so maybe more people will learn some truths about the pink machine. It is odd this is published in April not October. Not complaining mind you, for many of us breast cancer is an every-damn-day-of-the-year-not-just-in-October deal. I admit I am a little worried that a piece challenging the common perceptions of breast cancer is released nearly half a year away from the signature month when the media generally toes the proverbial line. I hope this magazine/article is remembered when October comes and we are drowning in pink, but I am sure pink events and products were in planning stages by November 1 of last year, and it is already too late to turn it around this year. Maybe next year.

I wasn’t going to write about it, figuring everyone else already has, and mostly I agreed with the article. But I had a hard time with the idea of “distorted fears of middle-aged women”.

To be fair, this article is the not the first time I’ve read someone comment that the pink marketing is selling fear to women, scaring them into getting mammograms, interpreting/presenting the stats to make it seems as if getting breast cancer is nearly inevitable if you’re a woman (1 in 8 was really picked on in one book I read), but it really bothered me this time around.

The author admits the fear is legitimate. And I agree that the fear is manipulated for profit. We’re taught to fear cancer so we get mammograms, but reassured that if does happen, it can be treated (thanks, awareness funding from drug companies! YES I’M BEING SARCASTIC)…so I guess fear marketing only goes so far. After all, pink never mentions metastatic cancer, and we should not fear death, cancer patients don’t die, we lose our battle (YES I’M BEING SARCASTIC, read my earlier post The D Word).

But here is the thing: I was not afraid before I got cancer. The pink awareness marketing may drive women to getting mammograms, may intimidate with the stats, but I thought when it happened to me, I’d be much older. I suspect that is the case with many young women with cancer, and I think some women of any age, without cancer, think it will not happen to them ever. They might recite the “1 in 8”, but assume they’ll be one of the other 7. So how real is the fear?

When my aunt was diagnosed in 2010 at age 50, I dutifully went for my annual, asked for a mammogram. The doctor did not detect anything in August. The mammogram performed in September was negative. By October 25, 2010 I had Stage 3 breast cancer. Color me shocked. When my nipple inverted, right after my “all clear”, that was when I had fear, and anger, of course, because the industry system—the pink message—failed me. Some would say that I should be grateful that I was not so full of fear prior to cancer, because detecting my cancer a bit earlier may not have changed treatment much—most likely I’d have still had my nipple removed—but I would like to have avoided the chemo or radiation if an earlier detection made it possible. I am not sure how I feel about all this.

So I ask myself what the hell am I so afraid of right now?

  • Recurrence, duh.
  • Another failed mammogram—misdiagnosis  
  • I’m afraid of wine, of all delicious foods, because I want them, and they allegedly cause cancer and every other health problem.
  • I’m afraid that as a dog walker who walks by pesticide treated lawns several times a day that I am causing a return of cancer, or a new cancer, in myself. I guess I could control that by quitting my job, but then how would I pay for cancer? Which leads to…
  • I’m afraid that if/when cancer comes back, I will not be able to afford treatment, so I will likely die, and there seems little I can do about that. You could say I should not have quit my job which had better insurance (co-pays are sometimes more than twice as much with my new government plan), but honestly, I am not sure I would have survived if I’d stayed in that job, it stressed me so much. 
  • I’m afraid my friends and family will get cancer. Hell, I’m afraid anyone else will—especially young women. Because there is so little REAL investigation into prevention, and the cause still seems to be mostly unknown.  And I blog and fuss and try to learn to be a health advocate because I actively do not want another young woman to go through what I went through, but I know I can’t prevent it. This is helplessness as fear.

Is shock at getting unexpected cancer worse than being afraid prior to getting it? I cannot ever know the answer to that question. I just don’t want ANYONE else to feel that shock, because it does not eliminate the fear that comes after. I mean, now I just have both fear and shock (and oh yeah, anger), and I’m not sure I like that. I don’t know if that is better or worse.

So what about all this alleged fear-mongering perpetrated by pink medical industry? Yes, I do think it is wrong when done just to drive profits. But from where I’m standing, the fear is reasonable….because I got cancer. And others under the age 40, with little to no risk factors will get it too. And no one knows which one of these young women will “get lucky”, because we have no prevention, no understanding of causes. These women should be afraid but they just don’t know it yet. I just don’t know how else to say it.