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

My Reality and Your Fairy Tale

I’ve never really had that one post about the dumbass things people say to cancer patients. The one time I started to write such a post, I wound up focusing on a small slice of all those irritating phrases—I focused on the awful, blame-the-patient phrase of “lost the battle to cancer”, and how much I dislike the euphemisms for death.

Books and many essays have been written about the dumbass things said to cancer patients, and I couldn’t really add to the conversation, so I lost my motivation to do so. Now that I’m a couple of years past my final Herceptin infusion, these dumbass things are not said to me, so they are not on my mind as much. And really, I’ve finally accepted the idea that sometimes what is said to cancer patients is really meant to soothe the cancer fears of the person doing the talking, not just the fears of the actual patient.

But I had the bad luck to reflect on one particular dumbass thing today; the phrases that reassure the patient that “everything will be alright,” or “my friend/relative got cancer when she was 35 and lived to be (some big number), and she was fine…never had any more cancer!”

I’ve had a lousy month, or maybe a lousy past two months what with one problem after another. The latest involves finding new insurance, and in turn, I’ve just learned I will need to find a new oncologist because my current one does not participate in any of my new, limited choices. I’ve been scrambling to find out which of my current doctors do what plans (the internet is a failure on this, gotta call each of them to get the nitty gritty details). Long story short, I got into a conversation today with the surgeon who performed my lumpectomy two years ago and asked her for suggestions for other oncologists I might try.

I think she actually thought I was considering just abandoning oncology altogether, just not even bothering to see one anymore, since I’m about three years out from initial diagnosis. She became a bit grave on the phone.  She told me I had a “very aggressive, serious cancer” and, given my younger age and the type of cancer (aggressive, fast growing, HER2+), I need to be in the care of an oncologist “for a long, long time.” That last phrase she said slowly and with great emphasis.

Yeah, I know. I need to see an oncologist twice a year for 2014 & 2015, and then once a year for the five years after that. It is a long time, and I hope I can reach 2021 to see my first calendar year free of oncology appointments. Honestly I’m afraid to let myself look forward to that day, it seems so far away. And I know my cancer was serious. I do not take my cancer lightly, and I’m not going to blow off getting a new oncologist because I feel fine right now, which I don’t anyway. Rather, I tend to suspect every twinge of pain, every change in body shape or function, thinking it means cancer is back. The sense of threat is real and sometimes very near the surface.

I really like my surgeon, maybe a bit more than I like my other doctors, especially because she is frank, no non-sense, and always gives me all the odds, probabilities, and facts sans sugar coating. But today I thought, great, I do not need that reminder now, when I already have bajillion other things sending me into panic mode. I began to talk myself down, to remind myself that just because I read blogs reporting various tales of recurrence, that isn’t necessarily going to be my fate as well. Then I thought back to all the times I heard people with their dumbass things said to cancer patients telling me it will all be ok in the end, because there is always so-and-so who just had a little cancer that one time and lived another 50 years.

There are so many reasons to dislike this little anecdote about the person who lived oh so long after that one little cancer incident. It is so dismissive of the very real fear and very real—sometimes high—possibility that cancer will recur in the person to whom this is said. While I do welcome anecdotes, because the small percentages or small likelihood stats (some of which I fall into) are made up of people, I still tend to consider all the possibilities. And this will sound so snotty, but when I weigh the tale of some random person told by some other random person against the word of my doctor, I take the word of the medical professional—who I give money to, BTW—over the random feel good story.

The words of my surgeon are my stark reality and the reality of many cancer patients, one that sometimes is conveniently ignored by those who wish to believe in the tale of the person who lived 50 or so more years. It isn’t a total fairy tale, but it may as well be for some. For those with Stage 4, whether upon initial diagnosis or recurrence, cancer is the rest of life, and that may be a long, long time, but probably not. For me, with my likelihood of recurrence, cancer is the 10 years from October 2010 until sometime in 2019 or 2020, if I’m lucky, and then who knows how many more years if that likely recurrence happens. Cancer does not claim my every moment right now, although it occupies more moments lately as I grapple with an upcoming 6 month check-up, that is, if I can get my insurance organized and get a new oncologist.  Right now, it is taking up a lot of my long, long time.

So to those who insist on the idea cancer is no big deal, that it will be tiny a blip and I’ll get another 50 years without incident—if you continue to ignore my reality, I’ll continue to ignore your fairy tale.

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