Hanging on the side of a cliff

So, exciting news being NED, amiright? Exciting, but also terrifying. You see, everything in cancer land is ass backwards. For example, when your cancer gets worse, we call that “progression.” Progress would suggest improvement, right? Not with cancer. You’d also think that I’d breathe easier knowing the drug I’m on is working, right? Not so much. Let me use a metaphor to explain.

I’ve written in the past about how having metastatic breast cancer is like being shoved off a cliff. And I’ve also written about how hope is like a rope that kind people who just don’t get what metster life is is like will throw down to you and say “Here, climb this.” But the problem is, the higher you climb, the harder the fall. And you WILL fall. NED doesn’t mean cured. It means the cancer is too small to be seen on a scan. It’s still in there, trying to figure out how to overcome the drug I’m on and start growing again. 

So, basically what’s happened is, my oncologist gave me a rope, and I trust him more than I do the good hearted friends who say “be positive, have hope,” so I’ve climbed the rope. And now here I am hanging off the edge of the cliff on this rope, not fully at the top, but high enough that I can see the view from up here, and think “holy shit that’s a long way down.” 

At the top of the cliff are the researchers. And they say things like “be patient, help is coming.” But meanwhile I’m hanging here off this cliff, and frankly, my arms aren’t that strong. I don’t know how much longer I can wait. I hope those researchers realize I can’t just hang off the side of this cliff forever. Eventually I’ll fall. I don’t have 5 or 10 years to wait for a new treatment to be fully vetted. I need new things to be available when this rope snaps. Or better still, before it snaps.

So, I’m super happy I’m NED, but I’m also terrified. Because I know how slowly research is happening. It needs to move faster, not just for me, but for my friends whose ropes have already snapped. 

Scanxiety and Hope

I haven’t had bad scanxiety recently. Mainly because, I expected my scans to show the cancer is growing. When they did show it growing, I felt shitty–but not before the scan, just after, when I knew the results. 

This week is different. Because things have been going well so far on Xeloda. I never ask about my tumor markers, since I know they haven’t been an accurate reflection of what my cancer’s up to. But this weekend #bestdocever called to say that although he still doesn’t trust my tumor markers, they’re so far down now that he felt like he should tell me about it. This is good news, of course. Tumor markers down is better than tumor markers up, even if down may not mean anything, and way down is definitely a positive sign. We’ll know better when I have my brain MRI on Wednesday.

Problem is, I have a very complicated relationship with hope these days. I’m planning a big vacation for my family next summer–a visit to New York City, crossing on the Queen Mary 2, visiting London, taking the sleeper train to Inverness and exploring the highlands and Edinburgh before flying home–and thinking about it is both exciting and terrifying. I am so excited about the idea of this trip, and so terrified it won’t happen, because I’ll be too sick, or worse. I hope we’ll go. And hope is hard. Because hope acknowledges the possibility that what I hope for won’t happen.

I think that’s why, before most of my scans, I just expect the worst. Being let down by my body over and over again is hard. I don’t hope that the scan will show something good, because it’s just too hard to pick myself up when the scan shows more progression.

But this time is different. This time there’s a legitimate reason to hope: those plummeting tumor markers. I can’t help but hope in the face of hopeful data like that. And so I’m terrified of what those scans will show. I find myself distracted and weepy when I should be engaged with the kids. I start to worry, what if the scan shows something bad–instead of my usual acceptance that it WILL show something bad. What if there are too many brain metastases now for gamma knife to be an option? What if we run out of drugs that work on my brain?

I know this sounds completely fucked up, to be sad and anxious because of good news. But everything in the world of cancer is completely fucked up. Losing two friends and having two others enter hospice in the span of a month, when you’re not even 40, is completely fucked up. Having a 4 year old who knows what an oncologist is, is completely fucked up. So why wouldn’t my feelings about good news be completely fucked up? 

It would be nice if Wednesday could get here as quickly as possible.

Don’t you worry your pretty little head

I’m not gonna lie, I just drank some bourbon and I’m already wound up with the onslaught of pink when it isn’t even goddamn Labor Day (I am so sorry, childhood and gynecological cancer peeps, it sucks that Pinktober is eating your awareness month). So maybe this will be even more rangy than my usual feminist breast cancer rant, but I’m not even remotely sorry about that.

I am so fucking sick of the pink awareness machine convincing everyone, especially early stagers, that breast cancer is cured when treatment for early stage disease ends. We don’t know how many people who have early stage disease will later develop metastatic disease, but it may be as many as 36% within 12 years of ending treatment. However many it is, it’s TOO FUCKING MANY. And too many women who have early stage disease think they’re cured, when they are still at risk of developing metastatic disease. 

Why does this happen? I personally think it’s partly a gender issue, and partly a marketing issue. Let’s delve into the gender issue first.

It’s been a thing since time immemorial to treat women like they’re too fragile or stupid or incompetent or whatever to be handle the truth. We’re delicate flowers, you know, so if you tell us that something scary might happen, we’ll probably have some hysterical (did you know that word has the same root as hysterectomy? Because doctors thought our uteruses made us cray-cray) reaction and never recover. So the solution was, just don’t tell women what’s happening to them. 

What. The. Fuck. I mean, WHAT IN THE ACTUAL FUCK, amiright? Except we still do that now. We don’t tell early stagers that their cancer might metastasize because we don’t want to scare them. Why don’t we want to scare them? Is it because we worry their poor little female brains can’t handle it and they’ll start running through the streets screaming and pulling out our hair? For the love of pete, could you all please just stop infantalizing us for five minutes? Women have a right to know what can happen to their bodies. We are not pussies. We’re strong and powerful and we handle horrible shit all the fucking time.

Then there’s the’s the marketing thing. Take a look at practically any marketing for any cancer center, cancer charity, or cancer anything, and you’ll see it’s about selling hope. Hope for life, hope for a cure, hope for never having cancer come back. How can you convince people to hire a doctor or donate money if there’s no hope that they’ll be cured? I mean, if the marketing said “We’ll do our best but 1 in 4 of you will develop terminal breast cancer anyway” they’d never convince anybody to part with their hard-earned dollars, now would they? The truth can be mighty inconvenient, so it’s easier to just focus on hope.

The thing is, though, if women don’t know that their cancer could recur, they don’t know what signs to look out for. They don’t know that unexplained bone pain is something they should mention to their doctors, because it might be bone mets. They don’t know that that headache they just can’t shake should result in an MRI. They don’t know that the tamoxifen they’re on is really fucking important and if they stop taking it, they may be risking their lives. Because nobody told them the risks, because nobody wants them to worry their pretty little heads.

This shit is fucked up. Patients have a right to know that their cancer could come back, that it could become life-threatening. We should respect them enough to trust that they can manage their fears in the face of the facts. We should treat them as adults and tell them the truth. 

“Your hair looks great!”

When I was a senior in college, I went home for winter break and decided I wanted to cut off my long hair. It had been long for a few years, and I just wanted to do something different with it. So, I went to my mom’s salon and told the woman I wanted it cut short. The conversation went something like this:

 Me: I want to have it shorter.

Her: Super! You’d look great with a shoulder length style.

Me: No, I mean short.

Her: Like a chin length bob?

Me: No, short. Like, above my ears. You know, short.

Her: Did your boyfriend just dump you?

Me: …uh, no, I’ve been single for a while now.

Her: Are you flunking out of college?

Me: What?!?! No!

Her: Are you coming out or something?

Me: No, I’m straight, why do you keep asking me these questions?

Her: Because usually when people want to go from long to super short, it’s because they had something bad happen or they’re trying to make a big change in their lives.

Me: Wow. No, the only change I want to make is to the actual hair.

Her: Are you sure? Because, if I cut it that short, I mean, it’ll take a long time to grow back out.

Me: Yeah, I’m sure. Seriously, can I just have it cut now?

Honestly, I got asked less questions by the minister when I was getting married than when I got that haircut. People take their hair super seriously. There’s a lot of our identity tied up in it. Which is why it seems to be the thing that people focus on when cancer happens. I never really thought about it that much until my hair fell out during chemo last spring and suddenly my hair, or lack thereof, was a subject of conversation all the time.

I fucking hate my hair now. Because, it wasn’t my choice. I didn’t get asked 10,000 questions by my oncologist about whether I was sure I wanted to go bald. Instead, he just told me the cisplatin and etoposide would make it fall out. Cancer does that to you. A lot of the choices you used to get to make, you don’t anymore. Hair is just the most visible one of them.

I get zillions of compliments on my new do. Even when people know I hate it, and even when they know I don’t feel better when they talk about my hair, they seem to be unable to stop themselves from saying how awesome my hair looks. I get told I look great by practically everyone I know. I have been trying to understand why people seem to have such a need to comment on my appearance. Why do we tell the cancer patient “you look great”? Why do we celebrate when a cancer patient doesn’t look like Skellator?

I think it’s this: when you have cancer, or any other life-threatening or terminal illness, people want you to be well. They love you, and they don’t want you to die. So, they cling to every scrap of hope that you are going to beat your disease, and looking like you’re not dying gives them that hope.

But the truth is, you can’t tell that someone is going to be cured just by looking at them. Lots of us folks with metastatic cancer are living with our disease for now, and we look and feel OK for now, but the truth is that we’re going to die of this unless there is a miracle breakthrough in our now-shortened lifetimes. That our hair is growing back isn’t necessarily the sign of wellness people assume it is.

And for me, living with everyone else’s hope is hard. I’m living with my doctor’s hope that science will find a cure in time for me, when we don’t seem to be putting enough resources into research. I’m living with my husband’s hope that we’ll die together in a nursing home in our 90’s, when even the most optimistic estimates of my life span rule that out. I’m living with my former coworkers’ hope that I’ll get well and come back to work with them, when I am probably going to be too busy with doctor appointments the rest of my life to ever hold down a job. I’m watching everyone around me needing to hope I will be well and somehow beat this thing, but knowing I will let them down someday.

And so they say how great I look right now, and how cute my hair is, because they have hope. And inside I want to scream. I want to say, “Wake up! This is going to kill me. There is no silver lining to this. It’s not cute. Every bit of this is ugly. EVERY BIT OF THIS IS UGLY.” But I don’t say it, and instead, I make small talk about how lucky I am to have a nicely shaped head. And I hope it won’t be too hard for them when it turns out that looking good can’t cure your cancer.