Fucking Cancer

No, I don’t trust my body

Posted on by Beth Caldwell

The big fad nowadays in health–and trust me, when you have cancer, EVERYONE tells you about the latest health crazes–is to listen to your body because its signals will lead you to health. The idea is, your body knows what’s good for it and what’s bad for it, so if you just listen closely to it, your body will tell you what it’s supposed to be eating and doing and whatever.

Yeah, right. This is the body that tells me to eat the entire bag of chocolate and the entire bag of potato chips when I am menstruating. It knows what’s best for me? Chocolate and salt is what’s best for me? Really?

This is the body that decided to spit out my son 3 months early, because, who the fuck knows why. That’s what was best for me? To try to kill my baby?

This is the body that decided to start making cells that will literally kill me, and it, if left to its own devices. That’s what’s best for me? To kill me?

My body has betrayed me in ways that have caused me more emotional pain than I hope anyone ever has to bear. I see my body as a necessary evil that I must keep to survive, but it is not on my side, and it lies to me every day. It said “You don’t feel sick, that lump can’t be cancer.” It said “That chemo is killing you, don’t you see how sick it’s making you? You have to stop this!” My body is either an idiot or a cruel, sadistic bastard.

No, I don’t trust my body. I don’t trust it for one second.

Cancer is happening to everyone

Posted on by Beth Caldwell

Cancer doesn’t just happen to the person who has it. It happens to everyone around the person who has it. It’s happening to my kids, who keep asking if my cancer is gone yet, and why I have to quit my job, and why I can’t come play with them when I am chemo’d out or sore and tired after surgery. It’s happening to The Hubs, is now dealing with the overwhelming task of being a father, holding down a full time job, and being a patient advocate. And it’s happening to my friends and family, who are terrified of losing me and want me to be OK.

The reality of that, for me, is that I am finding myself alternating between propping up all the people in my life with my sunny disposition about all this, and collapsing at home in a pile of tears from the stress. I think it’s because I want my friends and family to be OK about as much as they want me to be OK. So, I am putting on a brave face as much as I can, not just because it’s getting me through the cancer, which it is, but because I know it helps everyone else get through the cancer. Because cancer is happening to them too.

Before cancer, when stuff happened and I needed to lean on someone, I would take off my brave face to my husband in particular, or to a few other family and close friends. But now, those are the people who are suffering from the cancer too. So I have to be careful about choosing who I lean on, and when, to make sure I don’t knock them over. Because, cancer is happening to them too.

I also learned in the NICU that you have to think carefully about who you take your mask off for, because some people you thought would hold you up, are actually going to step away when you try to lean on them, and you’ll fall even harder. Crisis can bring out both the best and worst in people, and if you choose someone in whom it brings out the worst, you will regret it. And it’s not because that person who stepped away is a bad person. Cancer is happening to them too.

But I also have to remind myself that in all my forgiving of people’s failures, and putting on of brave faces, that I have a terrible habit of taking care of the people around me, instead of taking care of myself, and I just can’t do that right now. So, I have been asserting my needs more plainly, and I have stopped trying to prop up the people around me as much. And that is really hard, and scary, but necessary. Because most of all, cancer is happening to me.

The Truth About Losing a Breast

Posted on by Beth Caldwell

One of the things that writing does for me, that I do for myself by writing, is find meaning in the things I am experiencing, in the feelings I have, in the world around me. I find if I write about things, it helps me gain a deeper understanding of them. In that way, writing is like therapy–it’s a way to process things so that they become clearer, because if they are clearer, they are easier to work with.

I know I’m dealing with something really complex when I can’t find the words to explain it. It doesn’t happen often, and when it does, I find it really disorienting, and frustrating. And that’s where I’m at since the mastectomy. Losing a breast has impacted me emotionally in a way I don’t have words to describe. It’s not just how it looks, but it is partly how it looks. Because, it looks awful.

And before you pull a John Legend and say “you don’t know you’re beautiful” please just stop. This is not me putting myself down here. MY BREAST IS GONE. Like, seriously, under no circumstances is that a good thing. It’s a shitty thing to lose your breast, an ugly thing. Was it a necessary thing? Absolutely. Would I do it again given the same circumstances? Fo sho. Is it still depressing and awful to look at the physical manifestation of my fight against cancer and what it has cost me? Of course it is.

From now on, when I look at myself in the mirror, I will have to be reminded of The Cancer. Hair grows back, gray in my case, but still there, and easily dyed if I really gave a shit about it. Breasts, on the other hand, do not grow back. Even after reconstruction, they bear a scar, and they have no feeling. The Cancer will always be with me now, even if I am lucky enough to get to a point of having no evidence if disease, which would be a big win for someone who is stage IV. Even if the doctors can’t see cancer anymore, I will always see it.

Before I had the surgery, this was my biggest fear, that I would only see The Cancer when I look at myself in the mirror. And now it has come true. I don’t see myself in the mirror anymore, I only see The Cancer.

When I try to talk to people about what that feels like….I don’t know, the words just aren’t there. I am usually the queen of the analogy, like, I can usually compare what I am feeling to something everyday, so folks can understand it. But I can’t even begin to say what this is like. I’ve never experienced something like this before, so I have nothing to compare it to.

I will say this, I hope this is temporary. A wise friend said to me that when you have a trauma, it takes time to incorporate it into your psyche and while that is happening, it’s hard to live with. And I think that’s probably true, that at some point I will carry cancer without being only cancer, just as the NICU has become part of me without dominating me. But man, it’s hard in the meantime.

What’s Treatment Like: Mastectomy

Posted on by Beth Caldwell

So, you’ve heard about chemo, and you’ve heard about radiation (so weird!), and now it’s time to learn about surgery. I’m gonna warn you upfront, this is way grosser than anything else I have described, so if you’re squeamish about bodily fluids, you’re gonna want to skip this post.

Alright, the rest of you non-squeamish types still with me? Right, here we go.

Before surgery, I was scared shitless, as I am about any kind of surgery–what if something goes wrong and I die on the operating table–and on top of that, I cried an awful lot about losing a breast. I was terrified that every time I looked at myself, and saw the scar where my breast used to be, I would have to be reminded of The Cancer. I was pretty much a mess.

Then a few days before surgery, I got sick with a sore throat. No fever or cough, just a sore throat, but man did it hurt like a motherfucker. So, I went to urgent care the Sunday before surgery, and they looked at it and said “Dude, your uvula is like 3 times the size it should be, let’s get you on antibiotics.” Then I really started to panic, because what if I had to postpone surgery? The only thing I could think of worse than having a mastectomy was postponing having a mastectomy. But luckily, the antibiotics helped immensely, and I was able to go forward with surgery after all. I think getting sick helped with my attitude toward surgery, or at least distracted me from my fears.

So, the big day came, and off we went to the hospital. My doc ended up having her morning surgery run long, so mine was delayed an hour, which was not fun. Lying in a hospital gown for that long, waiting for things to start, just was not helpful to my mood. But, then it was finally go time, and they gave me some kind of drug that they said would relax me…and that’s the last thing I remember, I don’t even remember them wheeling me down the hall to the operating room. The next thing I knew, I was in recovery and feeling really nauseous, but even that is kind of a dim blurry memory. And then they wheeled me to my room for the night.

At this point I want to give a shout out to the world of nurses. Because all of the nurses I met this stay were awesome. 9 weeks of The Boy in the NICU and we met maybe 2 nurses we didn’t like in that whole time. I mean seriously, how awesome are nurses, that practically every one you meet is kind and hard-working and just generally awesome? However much they pay you guys, you deserve more.

My mastectomy was a modified radical mastectomy with ancillary lymph gland removal. That means they took the whole breast, along with the lymph glands in my armpit area that are part of the breast system. Now, if you don’t take out the lymph glands, I hear pain after a mastectomy isn’t that bad because they take all the nerves out too. But if they take the lymph glands, there are still nerves in that area, so that’s the most painful part, and that’s what it was like for me. They gave me oxycodone and Tylenol to manage the pain, and the oxy definitely made me groggy and sleepy.

And now, here is the gross part. During the first part of the healing process, you have drains attached you. Like, they put a tube from the incision site from the boob, and the incision site from the lymph glands, and those tubes drain into bulb thingies that look like a grenade, only see-through and rubbery. And in that grenade, it starts out with red stuff, like, not thick like blood, it’s more watery than that, but it’s red like blood. Eventually it gets less red and more yellowish. And so, a few times a day, you have to empty the drains, and measure how much came out.

It takes like a week or two for most patients to drain before there’s a small enough amount of fluid coming out that you don’t need the drains anymore. And then you go to your doctor and they remove them. I got my first drain out at my post-op appointment 8 days after surgery, and when the drain came out, it was a very weird feeling, not painful but just weird, like, you can feel the tubing moving in there. Creepy. As of the writing of this, the other drain hasn’t come out yet, but it should be ready very soon.

Now, in addition to the drains, there was quite a bit of stuff wrapped around me when I came home from the hospital. Specifically, the outer layer was a giant ace bandage, then under there was gauzy stuff covered in tape, then under that were steristrips over the incision. And of course the drains, which had gauze around them. If I wanted a shower, I had to put some plastic stuff over the drains, so as not to let them get wet. The plastic stuff was basically like peel and stick Saran Wrap sheets. You can actually use regular Saran Wrap, they said, but I used the things they gave me. I didn’t feel like showering much since I wasn’t leaving the house and I was sore.

My doctor says I am recovering beautifully, and that the pathology report was good news–the chemo had done such a number on the tumors that only scattered cancer cells were left. Everything else from the tumor was just scar tissue. I still wear out pretty easily–a 20 minute trip to Target means a 3 hour nap later. And I’m still pretty sore, and my arm is pretty weak–I’ll be having PT for that later. But, all of this is normal, and I am on track to be screaming on a roller coaster with The Boy at Disneyland in a month…and after that, we do some more cancer-killing.

Losing the Privilege of Choice

Posted on by Beth Caldwell

All my life, I have valued education, and so my law degree, and being a lawyer, mean a lot to me. I am very proud of those things–when people ask me what I do for a living, I’m proud to say “I am a civil rights attorney.” Even though, most of what I do each day isn’t being an attorney, it’s being a bureaucrat. It’s shuffling papers and working in a system, not doing Clarence Darrow, Thurgood Marshall, Ruth Bader Ginsburg stuff. But that title, attorney, represents the hard work I did to get it. It represents my intellect and my knowledge too. And I am proud of those things.

And now I am losing that title, because I am leaving my job to become a full time cancer warrior. And I am having the predictable identity crisis about that.

I wrote a while ago about stay-at-home parenting not being a real choice for many women, that often it happens not because women hate their jobs and want to stay home with their kids, but because it’s financially better for them to stay home with the kids than to pay for daycare. The idea that it is a choice based in personal preference is really one for wealthy people, whose incomes are high enough that they can choose to work or not to work. It’s a privilege to have choice. I always had that privilege, and was grateful for it.

Until cancer took it away.

I’d been really burnt out at work before The Cancer happened. It hasn’t been the greatest place to work lately. Don’t get me wrong, it CAN be a great place to work, and I love my coworkers, but lately it’s been a really stressful job. I wasn’t happy at work–I came home frustrated a lot, and dreaded going there when I woke up in the morning. So I suppose leaving my job should be one of those “cancer is a gift” moments where I say “Cancer sucks but it gave me the gift of leaving that job I hated.”

Except, no, cancer is not a fucking gift. It’s a monster that eats the things that define you, even things you didn’t think about being defining until the cancer ate them. Like my eyebrows. And my breast. And my job. And this blog. And my privilege of choice.

I’m coping with this identity crisis by keeping up my law license. I will still be an attorney–just not one who is working. It’s a few hundred dollars a year to keep myself licensed, an unnecessary expense in a time when our family will have to be downsizing, but it’s my way of saying FUCK YOU to cancer–by holding onto one little bit of who I am, and not letting the cancer take it away from me.

Beth’s Classic Film Club: Rushmore

Posted on by Beth Caldwell

One of my all-time favorite movies, hands-down, is Rushmore. I can’t even put into words how much I love it. I feel like there is so much wisdom in that film. The secret to happiness is “you’ve just gotta find something you love to do and then do it for the rest of your life.” “Kids don’t like it when their parents get divorced.” “Too many extracurricular activities, Max. Not enough studying.” “Sic transit gloria. Glory fades.”

I’ve said in the past, before The Cancer, that I’m raising Max Fischer. The Boy hasn’t shown the leadership skills that Max has, but he’s shown all the distraction from studying. He’s also just as persistent when he sets his mind to something. I feel like, given the opportunity, he would attempt to procure some piranhas from a guy in South America. And the Boy feels deeply, and believes deeply in the importance of whatever his latest opus is, just like Max.

And then The Cancer happened, and of course, Max’s mom died of cancer.

The scene where we learn this is one where Max is talking to Rosemary, a teacher he is in love with, about her dead husband. He asks how the husband died, and she says he drowned. She asks how his mother died, and he says “Cancer.” Before I had The Cancer, this struck me as so romanticist, I mean, is there any way more perfectly tragic for someone to die than drowning or cancer? AIDS maybe. Rent has taken on new meaning for me lately too, especially because people with AIDS can get a very rare form of cancer.

The thing is, as fucked up as Max is, he’s actually a pretty great kid. Despite losing his mom. It gives me hope that if The Cancer takes me sooner instead of the later we all hope for, my kids are going to turn out just fine. Like Max, they have an awesome dad, and I’ve found them a good school. It won’t be easy for them, but they’ll get there.

If you haven’t seen Rushmore, seriously, go watch it. And then think about what your Rushmore is, and do it for the rest of your life.

An Ode to Lefty

Posted on by Beth Caldwell

I’m sorry, Lefty, but I am going to have to kill you, before you kill me.

When I was a teenager, I kept waiting and waiting for you and Righty to grow bigger. But there you sat, just being a sad little A cup, not impressing anyone. I mean, you were reasonably pert, but it took one hell of a bra to simulate anything remotely like cleavage. You did have that cool-looking mole, but since there was no cleavage there, it was hard to show that mole off. In short, you were kind of a disappointment.

And then came motherhood. And HOLY SHIT did you grow! I mean, overnight, from an A to a D, and it hurt like a motherfucker. It turned out you were so small because you were just waiting to get filled up with milk. A lot of milk. A shitload of milk. Insane amounts of milk. Enough milk to feed not just my kids, but other people’s kids too. During the two years of milk production, you usually produced about 25 ounces a day. That’s like 140 gallons of milk you made. Which is pretty fucking impressive.

And then when it was time to stop making milk, you deflated like a sad balloon, and just hung there, looking, well, sad. Who knew that A cups could be saggy? And I know I should have been like “I don’t mind, it just shows what a good job you did feeding my children” but instead I was like “seriously, you are just sad-looking.” And I put you in a push-up padded bra and then you looked OK.

And then you got cancer. A lot of cancer. A shitload of cancer. Insane amounts of cancer. Did you swell up and look good, at least? No, you just lay there looking the same as ever until I noticed you had a big ass lump. And now that the chemo has been eating the cancer, you are drooping even more. You look even more like a deflated balloon. And you STILL have cancer.

I am so fucking pissed off at you for getting sick, and I know you have to go and I have no qualms about this from a medical standpoint…and yet, I am still going to miss you. Because, you are a part of me. A deeply flawed part, but a part nonetheless.

So, I’m sorry, Lefty. We’ve had a good run, but now it’s time to go. Godspeed, and say hello to the pathology lab techs for me.

Hot Flashes

Posted on by Beth Caldwell

Holy fuck you guys, I hate hot flashes so much. I can’t remember the last time I slept more than 4 hours straight because I keep getting woken up by hot flashes. One of the many pleasant side effects of chemo, along with nausea and exhaustion, is that for young women who haven’t yet hit menopause, it fucks up your hormones and puts you into what we call chemopause. It’s just like menopause except it can sometimes go away after chemo is done.

And now I would like to apologize to any woman who has mentioned hot flashes to me and I didn’t express my deep and abiding sympathy to her.

For those of you who haven’t had a hot flash, it’s like this. You’re lying there in bed, or sitting on your couch, or doing whatever you’re doing, and suddenly you feel craaaaaaaaazy hot. Like, in-a-sauna hot, like, it’s-110-degrees-and-I-have-no-air-conditioning hot, like, what-the-fuck-kind-of-pepper-did-I-just-eat hot. And then after a couple of minutes, when you are all sweaty, it’s gone again. And you’re like, “THE FUCK JUST HAPPENED?!?!” And then if it’s the middle of the night, you try to go back to sleep…which doesn’t happen easily, at least not for me.

You know, women gotta go through a lot of shit in these bodies of ours. A lot of seriously fucked up shit. I have a hemorrhoid from birthing The Girl that comes back anytime I get constipated. (Did you know that Zofran, a key antinausea med for chemo patients, makes you constipated? Good times.) Don’t even get me started on periods themselves, especially after kids. And then we get menopause. So shitty.

Male readers: do you have shit like this you have to put up with? The Hubs never complains about his junk, unless someone accidentally knees it (The Girl usually, she loves to climb on people), but maybe you’re all just suffering in silence?

I dunno, I guess I shouldn’t complain because at least I’m going through this after kids. Did you know there are women who get breast cancer in their 20’s? Like, before they’ve had a chance to get married and make babies and all that? And sometimes, chemopause is permanent. At least I don’t have to worry about my fertility while I am sweating profusely at 1 AM. In fact, I sincerely hope that this will be permanent for me, because I really don’t want to go through menopause twice. Once is plenty.

Disability Benefits and Bureaucrazy

Posted on by Beth Caldwell

So, like a lunatic, I have been working, or, more like, trying to work, through my cancer treatment. Which basically means that when I am not at a doctor’s office or recovering from chemo, I go to my office and do what I call The Hug’N’Chat. The Hug’N’Chat means that lots of my coworkers come by and hug me and ask how I’m doing and want to know how treatment is going. Then they chat about work or their kids or whatever, and then they leave and the next Hug’N’Chatter comes in. I’ve been given a lot less work to do because, (a) I am so rarely at the office, and (b) when I am there, I don’t get that much done because I am so busy doing the Hug’N’Chat. I am handling a little work, but it’s fair to say I am not pulling my weight at the office these days.

At first, I thought this was going to be temporary–I’d have my chemo, they’d put me on hormone therapy, and I’d hopefully live a while longer, but there wasn’t much to do in the way of treatment because I was Stage IV, so I’d likely be back at work a lot more. But now that the docs are throwing around words like “cure” and “aggressive treatment” and “off the reservation,” it’s become clear that I don’t have time to go to work. Juggling 3 jobs–attorney, parent, and cancer patient–is just not feasible in the long term, no matter how kind and sympathetic my office has been. (And boy howdy have they been sympathetic! Honestly, people’s kindness floors me, again and again.)

So, luckily for me, I am eligible for disability retirement from my job, and for SocIal Security Disability Insurance. Most employers these days don’t offer disability retirement–I happen to work someplace that has a pension, and disability retirement is part of that. SSDI is something everyone who pays into Social Security is eligible for. Now, I am lucky–I have a spouse with a good job, and my disability retirement will make this whole thing not so painful of a transition. I get to keep my health and life insurance, too. But if i didn’t…

Let me paint a picture for you. You’re a single mom of two kids, ages 8 and 4. One day, you have a stroke. You’re gonna live, but work is not going to be part of your future anymore. So, you apply for SSDI. Somehow you navigate the online system, or maybe a friend helps wheel you down to the Social Security office in your neighborhood, and you fill out the paperwork. 5 MONTHS LATER, you finally become eligible for benefits. That’s not because of a backlog, folks, that’s written INTO THE LAW. You literally do not become eligible for benefits until you have been disabled for 5 months. So, how are you and your kids supposed to eat in the meantime? How are you supposed to pay your rent or your mortgage? What in the actual fuck?

Better still, now that you can’t work, you’re going to have to kiss your health insurance goodbye, huh? And guess what? You can qualify for Medicare once you qualify for SSDI…but only after two years. TWO YEARS ARE YOU FUCKING KIDDING ME?!?! So right when you are disabled the most, in need of the most medical care, you lose access to a system to pay for it? WHAT IN THE ACTUAL FUCK?!?!

Folks, these are stupid rules. And like all rules, they were made up by people and they can be un-made-up by people. All it takes is someone to care enough to write a letter to their member of Congress. Every day. For the next 3 years. Until it changes. Who’s with me?

A Cancer Update: Goodbye Booby!

Posted on by Beth Caldwell

One of the things that BLOWS about cancer care in this country is how shitty we do at treating people with metastatic disease, like me. The standard protocol for breast cancer that isn’t metastatic is surgery, then chemo, then radiation, then years of drugs to hopefully keep your cancer from ever coming back. It’s pretty effective–5-year survival rates for non-mets breast cancer are pretty high.

When you have metastatic disease, though, things are different. Doctors don’t talk about curing your cancer, they talk about extending your life. And that’s probably because there isn’t that much money spent on research on metastatic cancers. Shitloads of money get spent on early detection so people don’t end up Stage IV like me, which is good, prevention and early treatment kick ass…except, none of that research led to the detection of my cancer. I had to find that tumor myself. And now it would be pretty awesome if some of those research dollars that did me no good could be spent on saving my life instead. Hey Congress, you listening?

But I digress, and I didn’t mean for this post to be angry or ranting, because actually, I bring up the “we don’t talk about cure” stuff because a couple weeks back, I met with a surgeon who DID use the word “cure” to describe how she hopes my case will turn out. I nearly fell over when she said it. Hope, as Tim Robbins says in the Shawshank Redemption, is a good thing, maybe the best of things. The surgeon will be doing her part to make it happen by slicing off my asshole boob that’s been trying to kill me.

Here’s the plan: in a few weeks, the surgeon, who I now love almost as much as my medical oncologist, is going to do a mastectomy of my left super-tumorific breast, and also take out my lymph glands on that side, all of them. I’m not having reconstruction yet–it slows healing time. We’re still waiting on my genetic testing to come back, to find out if there is a genetic component to my cancer, because if there is, they’ll take the other breast too, since it’ll be likely to try to kill me later on down the line. And I’d do reconstruction at that point. If I don’t have a gene that’s causing this shit, they’ll let righty be.

After the surgery, they’ll probably do radiation on where-the-boob-was, which is another reason not to do reconstruction at the same time as the lopping-off. Now, the upside to more radiation is this: if they’ve done radiation on your chest, it makes everything more taught, so they can’t use implants. So instead, they give you A TUMMY TUCK and use that fat to fill up your boob. All my tiny boobed ladies: ever looked at your belly and thought “If only the fat would accumulate in my boobs and not on my belly.” I AM GOING TO LIVE THAT DREAM YOU GUYS!!! It won’t be for a while, but still, I am totally stoked.

And of course, they’re scheduling all this around our family trip to Disneyland in August. (Where my LA readers at? You should come stalk me, I’ll be there during Half Marathon Weekend.) The surgeon said I can absolutely go on roller coasters post-op. She said no swimming pools if I still have the drains in, but the white water raft ride is fine. And she specifically said to go on Tower of Terror.

The nurse who did my intake paperwork for the surgery team asked how I am feeling about surgery. I said “excited” and she was like “Oh! OK…” And I said “I bet you don’t get that reaction much, huh?” And she said, “Not frequently, no, but once in a while. Usually from people in your situation.” Yes, mets patients are really happy when the doctors haven’t given up on us. I want my cancer gone, and I am really glad my doctors want that too, and are willing to try to help me reach that goal.