Month: May 2015

Check Your Pity at the Door

Posted on by Beth Caldwell

Recently a friend of mine expressed that she’s seen a lot of “ugh, people say the dumbest things when you’re seriously ill” stuff, and it makes her afraid to say anything at all to someone who is seriously ill, for fear of sticking her foot in her mouth. But, she also doesn’t want to just not say anything, because that seems crappy too. So, she wondered what the solution is. I’m going to expound here a bit on what I told her.

The first thing I said is that I think the key is to look at a person with a serious illness as a person, not as an illness, and not as an object of pity. One of the quickest ways to make me feel like The Other, as someone less-than, is to do that broken neck sad face and say something in that voice that says “Oh poor you.” You know that face. It looks something like this:

 Here’s the thing. The able bodied world often looks at people with disabilities as less-than, and it’s incredibly isolating. At worst, in manifests in openly excluding people with disabilities from public life. You don’t invite that kid with disabilities to your son’s birthday party because you think your kid has nothing in common with them; you don’t hire the person in the wheelchair, because you don’t think they’re up to the job. But the same attitude of seeing people with disabilities as less-than is what drives well-meaning people celebrate us for just going about the business of of our lives, because the expectation of what it means to live with a disability is so low. 

Let me give you an example: I get told I’m brave a lot, as though people expect me to be sitting at home crying all day. What??? I mean, is my life harder now that I have a terminal illness? Of course it is. What I’m experiencing is fucking brutal. But I can tell you that if you had metastatic breast cancer, and I sincerely hope none of you ever will, you’d be doing just what I do. Putting me up on some pedestal for not crawling in a hole and dying is an example of how you see me as not like you. It’s buidling a wall between us.

I appreciate your support, and your empathy, and your asking me questions about how I’m doing or how you can help. But your pity is something I neither want nor need. If pity is actually what you feel for me, I beg you to set it aside when you’re interacting with me. If you have to, just don’t say anything about my illness, and talk only about yourself, or the weather, or that local sports team. Talk about anything other than the thing that makes you pity me.
Which brings me to the second point I made, and here’s the part where I may come off as an asshole, but I kinda don’t care.

I get that it’s hard for people to know what to say to someone with a serious illness. But you know what’s harder? Politely smiling while someone gives you the broken neck sad face. I’ve been doing it for over a year now–biting my tongue and saying to myself, “They mean well. It comes from a place of love. Of course they don’t know they’re pushing my buttons right now. Give them a pass, it’s hard for them too.” But every day it gets harder for me to stay quiet, and I find myself disengaging from social situations rather than have conversations that upset me.

And here’s the thing: between you, who’s worried about saying the wrong thing, and me, who is dealing with treatment, facing my untimely death, AND having my buttons pushed, who’s got it worse? Who should be the one to learn to set their own uncomfortable feelings aside–the person with the terminal illness, or her friends? I hate to play the cancer card here…oh wait, no I don’t.

The good news is, when I remind them that I’m just a regular person like they are, most people’s attitude towards me changes. There are a few folks who just can’t seem to let go of their seeing me as The Other–and I think that tends to come from the deep-down fear of ending up like me. But for most people, when I point out that I’m just doing what they’d do if they were faced with my circumstancces, they stop with the “You’re so brave” nonsense and go back to talking to me like a regular person. Which is really all I’m asking: to be treated just like anyone else, and not as an object of pity.

A White Dress and Your Sweatpants Are Both OK

Posted on by Beth Caldwell

I’ve been feeling really uncomfortable about how a lot of the moms in my world reacted so violently to Catherine, Duchess of Cambridge and her post-baby outfit. It feels like a pack of wild hyenas have descended on Kate and her white dress. And anytime I feel like a woman is under attack for her parenting choices, I get completely skeeved out, and I feel compelled to defend her.

You guys, Kate Middleton is fucking gorgeous. She just is. She was fucking gorgeous when she first met Prince William, and she is fucking gorgeous now. She wore gorgeous expensive clothes before she married Will, and she wears gorgeous expensive clothes now. That she came out of that hospital looking fucking gorgeous and wearing a gorgeous expensive dress was completely not shocking to me. It’s who Kate is. It’s how she rolls.

I almost never wear makeup. I also love to wear yoga pants. I left the hospital after both my deliveries wearing yoga pants and no makeup. Because that’s how I roll. 

Neither Kate’s nor my choice of how to dress ourselves is wrong. Neither of our choices has any impact on anyone else’s life. Just because we chose differently, doesn’t mean either of us is a traitor to the sisterhood of moms. It’s not like either of us went around talking smack about other women and putting them down for having different wardrobe preferences, now did we?

Now, some folks have expressed legitimate concern that Kate isn’t actually the one making her wardrobe choices, that this whole perfect-looking-royal thing she’s been rocking is being forced upon her by Will’s family. And if that’s what’s really going on, well that IS shitty. Feminism is about personal autonomy, and if she doesn’t have that, then yeah, I do feel sad for her, and we should come to her rescue, the way someone should have come to Princess Diana’s rescue. But I personally don’t buy it. Everything I’ve seen from Kate over the years suggests she is her own woman in a way Diana wasn’t able to be. And frankly, if you looked away from the outfit for a minute and saw her face, I mean, she looked pretty damn happy to me. Like most new moms.

Which brings me back to the haters. 

Look. I get that it’s easy to feel like a failure when you see a celebrity mom looking that good, when you’re struggling to find time for a shower. I really do get it. But I implore you to realize that that feeling of failure is because The Cult of Perfect Motherhood is trying to convince you that you live up to an idealized feminine beauty standard that 99.99% of us will never achieve, since we weren’t born looking like Kate and we don’t have a team of support personnel to help us look that good. The Cult has worked hard to convince us that we should look like Kate, because that’s how they get you to waste your money on beauty creams and shit. By making us feel like failures. 

The thing is, once you get deprogrammed from The Cult, you no longer feel like shit when you see Kate in that $3000 dress. You just see a woman who’s just had a baby with a big smile on her face and an adorable child in her arms, and feel joy. Even though she’s doing motherhood differently than you. Because, her choices are hers, and yours are yours, and neither of you is wrong. You’re just different, and that’s OK.

Juggling

Posted on by Beth Caldwell

A funny thing happens when your cancer brings you bad news. You share the news, and suddenly EVERYONE in your life wants to help. EVERYONE. People you haven’t seen or heard from in months, people you see all the time, people you’re very close to, people you only sort-of know. It’s wonderful to know how kind the people in  your world are when the chips are down. The problem is, it can be really overwhelming trying to juggle all that love. (That sounds dirty, doesn’t it?)

I don’t mean to sound like an ungrateful asshole, because although I am sometimes an asshole, I’m certainly grateful for all the support we receive from friends and family. Tonight my sister-in-law is bringing us dinner, the first of many that our loved ones will be bringing us during this new phase of treatment. Friends are signing up to take me to chemo sessions and watch The Kids on days I’m in treatment and daycare or school is closed. Our family simply couldn’t function without all this help, period. And we can’t say thank you enough.

And yet, here comes the but. But. I also find that when bad news comes, people don’t just want to help. They also want to spend time with you. It’s like suddenly everyone realized I wasn’t kidding about this whole “metastatic breast cancer is terminal” thing. As though they were all living with their hope that I’d somehow be the miracle, the outlier, the one who lives 20 years and then dies of something unrelated. And now they realize their hope was a delusion, and that I wasn’t just being a pessimist reminding them over and over that the average lifespan after a metastatic breast cancer diagnosis is 2-3 years, and I’m 1 year in already.

So now, everybody wants a piece of my time. They want to get together, they want to go out drinking, they want to make me laugh. They love me and they’re grieving, and they want to hold onto me, and spend time with me.

But the one thing I don’t have right now is time. Not just in the “I’m dying” sense, but also in the very immediate sense. I’m in treatment. That means that every Wednesday for the forseeable future, I’ll be at my oncologist’s office getting chemo. That’s a whole day a week that’s totally shot. On top of that, there’s the effects of chemo, which include, of course, fatigue. Fatigue is an asshole. It had me spend most of Mother’s Day weekend laying around watching The Love Boat, because that’s all I was up for. Fatigue doesn’t allow for nights out drinking with the girls, or playdates at a park. It eats up a lot of time that I’d rather be spending doing something, anything, ANYFUCKINGTHING other than what fatigue allows: laying around, waiting to feel OK again.

And here’s where I feel so incredibly frustrated that cancer is doing this to me, because I’m doing a lot of canceling of plans and saying “I’d love to see you, but I can’t.” So far, everyone’s been great about it, because they’re all lovely people, but it’s still just incredibly overwhelming, all this having to say no. I’m an extrovert, and I get my energy from spending time with people. Spending time alone sucks.

I’m trying to cope by funneling my fun into lazy activities. Like, having people over, so I can lounge in my recliner and just hang out and chat. And I’m also carefully planning my energy expenditures, budgeting my strength for a handful of big nights, like MamaCon this weekend. Living with mets is half a life in many ways, but it’s still a life. And I’m living it the best I can right now, even if it’s not the way I want to live it.

Adventures in Radiation: Gamma Knife Surgery

Posted on by Beth Caldwell

You guys, it’s Mets Monday again! I promised you a description of how my gamma knife surgery went, and today I will deliver on that promise, complete with pictures! If you’re squeamish about people having screws drilled into their skull, you should skip this post.

We arrived at the gamma knife clinic at 6:30AM, which is a brutally early hour of the morning, especially when one isn’t allowed to eat or drink before the procedure starts. And yet I managed to be perky, because that’s how I roll. I mean, being a grouchy jerk when you’re having horribly crazy tortuous things done to your body is perfectly understandable. But when you put on a smile and ask the nurses how their weekend was, I mean, that positive energy sent out into the world has to be a good thing, right? Besides, it’s not the staff’s fault that I’ve got cancer, so why take it out on them?

So. There I am, at the clinic, in the wee hours of the morning, being perky despite a drastic lack of caffeine. This is me hanging out waiting for the show to get started.

  
Yeah, that’s my t-shirt that says My Oncologist Is My Homeboy. Because he is. 

Next, it was vitals and IV time, and of course, my very favorite thing, Ativan. Ativan works for nausea AND anxiety. Good stuff. See how calm and mildly stoned I look? 

  
Then came the screwing in the skull part. So, the way gamma knife works is, it’s a very very targeted form of radiation. So, it’s super important that they’re zapping the right spot, so they hit the tumor and not someplace else. Which is why they screw a metal frame to your head, and lock your frame onto the machine. The screws only go in a couple of millimeters, but I mean, they’re drilling in your skull. So they dope you up with fentanyl, and also inject stuff where the screws will go to make it so you aren’t in pain from the screwing. 

 
So there I am, with screws in my head and this big ass frame on my face. You can see how where they injected the numbing stuff, I’ve got like giant blobby swelling? Yeah, that’s normal for this procedure.  I joked and laughed through this process, and the nurse said it’s the first time she’s seen anyone do that. She kept saying what an easy patient I am. See? Perky.

Next they wheeled me upstairs for an MRI of my brain, to see if anything new had popped up, and to get a very very precise picture of the lesions in there. And THEN I was finally allowed to eat. And drink coffee. The Hubs (who was there for the whole procedure and took these photos–thanks Hubs!) brought me what you all probably know is one of my favorite foods: bacon.

  
He also brought me a mocha. I was so happy. 

Then we hung out for a bit–a lot of cancer treatment involves hanging out and waiting–and then it was zapping time! The machine looked a lot like a CT machine, and once I was wheeled in there, and my metal frame locked in place, they put on whatever music I wanted. I have a playlist that sounds like a cocktail party in 1963, and that’s what I chose to listen to. Except, I think maybe 5 minutes into the procedure, I fell asleep in the machine, which is apparently very common. I mean, they’ve doped you up on Ativan and given you fentanyl and whatever. Of course you’re going to fall asleep.

My zapping took about 75 minutes, 15 minutes for each spot. So, there were 3 spots in my brain that they were fairly certain were cancer, and then there were 2 spots (one of which was new on the day-of MRI) that were so tiny, they weren’t sure if they were cancer or not. But to be on the safe side, they zapped all 5. 

Then came the unscrewing. They held gauze on each hole to stop the bleeding, and then I took this selfie.

  
About five minutes after this, I’m laying there waiting to get ready for discharge, when I realize that I have blood gushing out of one of the screw holes in the back of my head. There was a lot of it, and the doctor came in and did the gauze thing again to get it to stop. While she was holding the gauze to my head, we started chatting and realized that we went to the same middle school–she was in 6th grade when I was in 8th grade. Seattle is truly the smallest town in the world.

And then, with the bleeding stopped and my vitals good, off home I went. We were home by 2PM, and one of the first things I did when we got home was make The Hubs pull out my middle school yearbook, so I could look up the picture of the gamma knife doctor, take a picture of it, and send it to my oncologist, along with a picture of my picture from that yearbook. Because I’m an asshole. I won’t share the nice gamma knife doctor’s picture here, because I’m not THAT big of an asshole, but here’s me in 8th grade. Aren’t those earrings epic?

  
Everything was going fine with recovery–I was a bit more tired than  usual, but not too bad–until my face started swelling up. Which is also a normal thing, as the drugs they injected in your skull start to drain. I looked like this.

 
WTF. Was I in a bar fight? Was I attacked by bees? The most annoying part was that it was hard to see out of that eye that’s almost swollen shut. Luckily, within a couple days it was better and I was back to looking like me again. I feel like with radiation, it’s a relatively simple procedure, like, this was one day and you’re done, unlike chemo that goes on for months, and it’s not like you’re puking after. But then, your face swells up like a balloon, or with regular radiation, you’ve got a weird shaped suntan that never goes away. Which is why radiation isn’t my favorite thing. I feel like it’s psychologically harder than chemo.

So, that’s gamma knife. This is the reality of metastatic breast cancer. It’s bizarre treatments and blood gushing out of a hole in the back of your skull, and even with all of this crap, it’s still incurable. I’m doing all this to buy myself time, but I’m still going to die with or of this disease. Today 108 Americans will die of metastatic breast cancer, even after having endured treatments like this. We deserve better. We deserve research that will find us a cure.