The Next Time Round

Sometimes I forget that there are actually people out there who do not understand that metastatic breast cancer is usually fatal. Laurie Becklund’s video, in which she mentions how someone gave her a “get well” card upon hearing of her metastatic recurrence, reminded me of an upsetting incident that happened last summer. (For anyone who does not know, Becklund died Feb. 8.)

I’ve written often about the ever present fear of cancer, that I’ll never be “over” cancer, and how that sometimes that fear is a bit more pronounced. Last summer, after a “suspicious” mammogram that led to an MRI, and various other symptoms, I was in a state of higher anxiety about recurrence than usual. When discussing the fear, someone said to me that it would not be as difficult the second time round, because after all, I knew what to expect.

I was unable to respond. In the back of my mind, I was afraid I would sound like my usual self, always determined to see the bad side of a situation. Now I could kick myself for that. I think everyone views me that way anyway, even when I choose not to express my “negative” thoughts. But more importantly, I regret not taking the opportunity to explain what causes me fear. And yes, this person, given their profession, should’ve known better than to dismiss any fear.

It is so odd that anyone would think a second round of cancer would be easier, simply because a patient has been through it before, and knows what to expect. I want to say “yes, I HAVE done it before, I know what to expect, and that is precisely why I am so anxious—because it was horrible!!!!” I remember reading an article while in treatment, written by a caregiver, who said that over time, all the memories of chemo and its awful side effects fade. True, I don’t really “remember” how awful I felt, only because I’ve never felt so bad/sick/tired before or since. But the knowledge that it was the worst over-a-year-long experience of my life has not faded at all.

At any rate, recurrence will probably not be much like the first time round. I expect there to be variables. If it is a simple, early stage recurrence of the same cancer in the same place, I’d have a mastectomy—very different than the lumpectomy I had last time. That’s just for starters. There would be no radiation. And what drugs would get used—and would they impact me differently, given my body is not as healthy as it was going into cancer that first time? Those are just the thoughts off the top of my head.

The biggest issue is that recurrence can be in a different place, because the cancer would have metastasized. That is a completely different scenario. Metastasis is real possibility, and it troubles me that 1) some folks refuse to acknowledge or are simply ignorant of that and 2) treatment and outcomes for metastatic cancer are NOT comparable to the first cancer experience. Sometimes I wonder, with all the positive survivor culture that saturates everything, if some people mistakenly took home the message that breast cancer at least, never causes death.

For me, the fear, obviously, is death. Right now, even though I’ve had cancer, I can hang on to the idea that maybe I won’t get it again, and that I will reach an old age and die of something else. Metastatic cancer would put limits on that idea. Would I have to abandon the idea of reaching age 80, 70, 60, even 50?

Yes I’m aware of the anecdotes, of the many women who have lived well beyond that five year from metastatic diagnosis mark. And I am aware that many would prefer not to be viewed as a dead woman walking—would prefer to concentrate on living. I’m not discussing that, merely stating that I know such a diagnosis would severely limit the likelihood of reaching old age. Because I think there are so many who do NOT know this.

I do not know how I would handle a metastatic recurrence. One of the socially UNacceptable lessons I learned from cancer is that it is useless for me to say I’d know what I’d do or how I’d feel if a situation were different. I do know that I do not want to know.

I think this knowledge of limited life span should be enough for anyone to understand why a recurrence is such a huge fear, such a cause of anxiety. It should also explain why I cannot count on previous experience. The idea of “you’ve done cancer before, so you know you can do it again” concept does not apply to a metastatic recurrence scenario—at least for me.

Of course there are many other differences that I am thankfully only aware of because I read other bloggers who describe them. Differences like, frequency of doctor visits and scans, being in treatment permanently, switching to a new drug every time the current one stops working, and I’m sure there are more. How can these things even compare to that first cancer experience? For me, they do not.

Even worse, the incident last summer reinforced for me the awareness that most people do not even understand that treatment for Stage 4 (when a cancer has already metastasized by initial diagnosis—see note below) is vastly different for those of us who “caught it early”. The experience is different for ALL the “metsters”, regardless of if metastasis was found the first, second, or third time round. Thankfully I am not in that group, so I do not have the right to try and describe it. I’m guessing anyone who reads my piddlin’ blog already reads blogs by those who can articulate the experience. (Anyone who has other blogs or sites communicating the metastatic experience, feel free to leave links in comments, if you are so inclined).

I wish I’d brought up all these points to the person who tried to assure me that since I’d done cancer before, I knew what to expect, and that should reduce my anxiety. It only heightened my anxiety. That person is no longer in my life (for other reasons). I’ll make sure all those who do remain in my life, or enter it in the future, understand that the next time round, would not be the same for me, at least. Metastatic cancer is a completely different animal in CancerLand, and I’ll try to do my part to make that clear to those who just do not “get it”, to the best of my curmudgeonly ability.

Note: See here for explanation of difference between Stage 4 and metastatic breast cancer. Also find in this article information about how statistics and data do not accurately reflect metastatic recurrence. Another note about deaths not always being attributed to MBC: “Another quarter-million Americans are estimated to be waiting in the wings. I say “estimated” because no one is required to report a metastatic diagnosis. Death certificates normally report symptoms such as “respiratory failure,” not the actual disease. We are literally uncounted.” from As I Lay Dying by Becklund.

Addendum: I rarely write about MBC because I can only speak for myself, and only write from my POV–so I never want to come off as someone worried & whining about what MIGHT happen, when those with MBC are worried about what HAS happened. So I hope everyone with MBC who reads this understands that is the spirit behind the post.

Want Attention? Just Say Breast Cancer

2/7/14 edit & author’s note: When I write, I assume readers are residents of cancer land and are aware of the latest, um, “dramas”, that are going on in cancer land. But that is unfair, and I’ve been made aware that I should include links to what I am ranting on about. I’m reluctant to do that most of the time because I don’t always want to give something that annoys me more access for more clicks–especially in this situation, because what I’m writing about here is the dubious methods employed for getting attention! But my desire to be clear about what has driven me to write about any topic wins out, so here is a link to the Salon article that made me aware of the Pancreatic Cancer Action PSA, and the PSA itself can be watched there as well. Happy viewing!

color pink

What is the best way to push your agenda? Just say breast cancer.

You can push your questionable prevention advice with this fear-mongering because everyone will listen. (I ranted about that a lot last summer, if you enjoy rants: 1, 2, & 3, all about how one report used fear of breast cancer in a title to talk about something else, and yes, I acknowledged even then that I was contributing to the attention.)

You can insist that your disease is more important because it kills more people than breast cancer—I’m looking at you, most heart disease-and-women campaigns. February is almost as annoying as October, since everyone honks about breast cancer to highlight how heart disease kills more women than breast cancer. As if everyone was not already tired of the phrase breast cancer. Because the only way to advocate one cause is to smack another down, apparently.

You can imply all your cancers are worse because of lack of funding and awareness because the Big Pink Ribbon Bully stole all the attention. As I’ve said before, breast cancer is a bully that is now being bullied—payback is a bitch. Everyone is tired of all the attention breast cancer gets, yet no one will shut up about it, myself included.

I’d like to say the best way to handle the pancreatic cancer PSA is to ignore it, because the backlash and buzz is drawing attention—no doubt that is exactly what is desired. It just proves my point: want attention? Just say breast cancer.

But ignoring it is wrong. Of course pancreatic cancer needs attention. And frankly, I have heard or seen people with other cancers comment that they wish they had breast cancer, instead. I don’t presume to know why, but I can guess. So the statement in the ad was no big surprise.

But I’ve also read one blogger’s thankfulness to have a gynecological cancer rather than breast cancer (sorry cannot remember who or where, cannot locate), because of all the silliness and sexualization around breast cancer, knowing she’d loathe the pink ribbon even more if she had breast cancer. She’s glad that at least her cancer is taken seriously. So there’s that too.

This is why I hate all the colored ribbons—it just creates a divided cancer gang land. Gotta be true to your colors. No thanks. People are sick and jealous of the attention breast cancer and Pink hogs (see What Do You Mean There Are OTHER Kinds of Cancer Besides Breast Cancer?!). Understand why Pink is doing more harm than good yet? Understand why Pink-coated-everything has got to stop? Understand why that ribbon does not represent this breast cancer patient?

When I was treated for breast cancer, I was not ushered into a separate room with pink champagne, cupcakes, feather  boas, and a party atmosphere. I slogged it out with patients with all kinds of other cancers. Just because so many people think they know all about breast cancer (NO) because they’ve seen a few Pink ads, breast cancer patients still have to get the same (slightly better than past years) slash, poison, and burn treatments many other cancer patients get. What non-breast cancer patients are NOT aware of is the fact that there is a good chance it will come back and kill me—I’ve heard that twice in the past several weeks from two different doctors who are involved in my cancer care. That is Pink’s dirty little secret: breast cancer still makes a person sick, the treatment is still horrible, and it still kills.

Dead is dead, regardless if it is from pancreatic, breast, prostate, or ANY cancer. Can the conversation, the message, the fall-out, from the PSA be an understanding of this simple notion?

No, because I’m sure there will be a segment of people thinking breast cancer patients, with our alleged advantages, should just stop whining, stop stealing pancreatic cancer’s thunder, stop insisting we have it just as bad, because in their eyes, we don’t have it as bad, no matter what we say. Because I know folks with mets breast cancer, or other cancers, have thought me lucky. I’ve thought it myself. I wrestle with it all the time. So should I shut up about this PSA? Is this what breast cancer patients should keep in mind before talking about this PSA?

At any rate, the PSA worked, because it invoked breast cancer. Attention, guaranteed.

Thank you Pancreatic Cancer Action, for reminding this breast cancer patient to not shut up about the horribleness of all and any cancer, equally. Thank you for reminding everyone just how much work there is to do, for highlighting just how badly Pink has failed in conveying the gravity of getting a breast cancer diagnosis, and for showing how un-classy it is to smack another down to lift your own self up.

So Let Me See If I Have This Right (In A Nutshell)

If you have breast cancer, and you dance around before your mastectomy for the willfully ignorant masses and post it online, you get to be hailed as an inspiration, and have mainstream media journalists proclaim your actions as THE way to do cancer.

But.

If you have breast cancer, Stage 4 no less, spend many years using social media to try to tell another side of cancer, the one the mainstream media will not show because it is ugly, involves the likelihood of death (“losing the battle”), the one that defies Pink, and you get not one, but two, insensitive op-eds written about you? You are called unethical? Judgment of you is called for and encouraged in regards to your behavior? And you are called a standard bearer for warrior culture when you’ve rejected the battle metaphors?

So, do I have this right?

Okay. Just checking.

Thanks, y’all. It’s been an eye-opener. Oh who am I kidding? No, it is not such a surprise as I step back and reflect (not reflexing, you know what I’m talking about). Same shit, different day, just more extreme.