Fucking Cancer

The Hunger Games

Posted on by Beth Caldwell

The other night I was watching The Hunger Games, and The Hubs came in the room. Now, the Hubs is usually one to have seen every sci-fi/fantasty/futuristic film there is, but for some reason, he’s never seen The Hunger Games, or read the books. So he says, “What are you watching?” And I’m like, “Duh, The Hunger Games.” And he’s like “Oh, I’ve never seen it.” And I’m like, “WHAT?!?! How can you not have seen this movie? Have you read any of the books?” And he was like, “No. I thought it was like Twilight or something.” And I was like, “WHAT?!?! No, it’s this crazy dystopian future thing. Dude, there’s no vampires.” I was seriously flabbergasted that he didn’t even know what The Hunger Games is about, but then I went back to watching the movie.

And then I got to thinking about cancer, as one does when one has it, I realized that those of us with terminal cancers have a lot in common with Katniss and the gang. I know this is totally geeky, but hang with me, this may be one of my most awesome metaphors yet.

Just like the tributes, we’re chosen practically at random, plucked from our regular lives, and plopped down in a strange world where we struggle to stay alive, all the while knowing that practically all of us aren’t going to make it. And despite our own trauma and the knowledge that we probably shouldn’t get attached to them, we make friends with the other people in this horrible place, because some of them turn out to be really awesome and we just can’t help ourselves. And we cry and put flowers around them when they die, and get more and more angry at the system that has put us in this place.

Yeah, that’s an obvious metaphor. Hang with me, I’m not done yet, this is going to get more interesting. And a wee bit political.

In The Hunger Games, the tributes compete with each other for resources, including the scarcest resource of all: getting to stay alive. It’s not surprising that in their desperation to live, they’ll do horrible things, including turning on each other. What’s the very scarce thing in cancer land than can keep us alive? That’d be research money, my friends.

In the breast cancer world, mets doesn’t get nearly the funding it deserves. I’m not saying that we don’t need better, less toxic treatments for early stage disease; we do. But while we spend 93% of breast cancer research funding on early stage disease, those of us with mets are dying. About 40,000 of us per year, in fact, every year, for 40 years. We don’t even know how mets happens. People who thought they caught their cancer early and thus wouldn’t have to worry anymore about it end up with metastatic disease. We don’t know what causes it, we don’t know how to prevent it, and we don’t know how to stop it from killing us once we do have it.

But that’s not the whole picture, either. Because, although breast cancer causes far too many deaths, other terminal cancers cause even more. According to this year’s estimates, there’ll be slightly less people diagnosed with lung cancer than with breast cancer, but more than three times as many deaths from lung cancer as from breast cancer. Lung cancer gets less than half the research funding that breast cancer does, and I think a lot of that is because people believe that everyone with lung cancer brought it upon themselves by smoking, which of course isn’t true, and even if it was, so what? People deserve to die because they made bad choices in their youth? Meanwhile, a lot of folks in the cancer world call breast cancer the bully disease, because we get so much more research funding than other, more deadly cancers, and we throw ourselves all these pink parades and get all this attention. And then, of course, we turn around and spend 93% our research money on those of us who aren’t dying.

See how easy it is to turn on each other, when we’re all so desperate to stay alive? How easy it is to be filled with hate and point fingers and say “You don’t deserve it, I do”? 

But who’s the real bad guy? Just like in The Hunger Games, those of us trapped in this cancer arena aren’t the enemy. The real enemy is the system that put us here–the cells that went bad, and the people who won’t spend the money we need to stay alive, and who spend it in ways that aren’t smart. Every time a drug manufacturer spends its research budget on another me-too drug that’s no better than similar drugs already on the market, every time Congress cuts research funding again, every time another study is done using animal analogs that don’t reflect human physiology, we’re left with less resources to keep us alive.

So, what if we blew up the arena instead, so to speak? What if instead of fighting each other, we came together and demanded more research funding, and that the money be spent where it will do the most good? Imagine how much better things would be for us. For all of us.

An Open Letter to Young Survival Coalition

Posted on by Beth Caldwell

UPDATE July 10 AM: YSC has taken down the Facebook post about this campaign, but Spencer Gifts is still listed as a sponsor on the YSC website. I haven’t received a response from them to this post yet.

UPDATE #2, July 10 PM: And now comes the official response from YSC CEO Jennifer Merschdorf. Per her request, below is what she said, followed by my thoughts.

Beth, I sincerely appreciate your thoughtful blog, and personally apologize to you and everyone who is upset that YSC has partnered with Spencer’s. We are all too aware that breast cancer is not pretty and pink. It is a serious disease that kills 40,000 women each year.

 Since 2008, Spencer’s has partnered with YSC on a bi-annual awareness bracelet campaign, donating 100% of proceeds from sales to YSC and other nonprofit cancer organizations. These donations have gone directly to providing scholarships for young survivors to attend our annual conference, along with funding our national support services.

 I TOTALLY GET IT … the name of Spencer’s Foundation “Boobies Make Me Smile” – is offensive and upsetting. As a young woman who also has lost both my breasts from breast cancer I have always been troubled with their name. 

 We are truly sorry that the partnership has offended breast cancer survivors. Please know that we hear you and are taking this feedback to heart. You can be assured that the offensiveness of the campaign’s name will be shared with Spencer’s.

 My email is below, and I am open to any other constructive comments.

 Jennifer Merschdorf

CEO, Young Survival Coalition

jmerschdorf@youngsurvival.org

OK. So, let me get this straight. The CEO of YSC acknowledges that the name of Spencer’s foundation is indeed offensive, and that she has “always been troubled by it,” and yet she let her organization continue to partner with them anyway? Are you kidding me? 

You’ll also notice that she doesn’t say that YSC would terminate this relationship with an organization whose very name she finds offensive. No, she’s just going to share our concerns with Spencer. I’m sure that will teach them a lesson. 

See, this is the problem with cause marketing in general. Charities desperately need funds to do the important work they do. And so they get in bed with corporate partners who have little interest in understanding what the charity is trying to accomplish, corporations whose actions even actively undercut the charity’s mission. YSC is certainly not the only charity to do this, but because they’re a group whose work I respected, I’m particularly disappointed that they have fallen into this trap.

A friend of mine pointed out that when faced with similarly dirty money that they desperately needed, Girl Scouts of Western Washington made the opposite choice: they gave back a donation of $100,000 to a donor because the string s/he attached to it conflicted with Girl Scouts’ values. They publicized their decision and ran an Indiegogo fundraiser that raised them the $100,000 in a single day and, to date, has raised them over $332,000. The moral of this story? Organizations like YSC don’t have to take money that undercuts their mission. In fact, when they do the right thing, they can make out better financially.

I continue to urge YSC to do that right thing: end their relationship with Spencer and its offensive foundation. If they do, I will support them with all of my energy and encourage my readers to do the same. If they don’t, well, I guess we know that Spencer’s money is worth more to them than their mission.

————————————–

Dear YSC:

I’m an under-40 woman living with metastatic breast cancer. I’m your demographic, the one your programs are designed to help. And you HAVE helped me–I even go to a support group for young metsters organized by a YSC volunteer. Which is why I think I’m the most disappointed in you, even more so than Stupid Cancer or F*ck Cancer, for being involved in this.

  
See what it says at the top of this? That’s right, it says “Boobies make me smile.” And of course it says it twice, because we all have two boobies. I see what you did there! Hahaha, how clever! 

Oh wait, no it’s not. It’s actually horribly offensive. 
I don’t have two boobies. I only have one. They cut off the other one because it had an enormous tumor in it. And the most horrible part of that is, I’m STILL going to die of metastatic breast cancer.

There have been plenty of studies done about how the sexualization of breast cancer hurts breast cancer patients. First off, supposedly funny and edgy slogans like “save the tatas” and “boobies make me smile” trivialize a disease that kills 522,000 women and men worldwide every single year. The death toll in the US has been 40,000 per year for decades. How is the thing that kills those women supposed to be funny? How are those of us who will die of this disease supposed to feel about this joke?

Secondly, focusing on our disease originating in our breasts, rather than seeing us as whole people, dehumanizes us. And it makes women feel that if they have a mastectomy, they’re no longer worthwhile, or feminine, or real women. When I lost my breast, it almost broke me emotionally. Almost. This sort of campaign brings me right back to that feeling, and it does the same for many other women who have had their breasts amputated in a desperate attempt to save our lives–because our lives are what matter, not our breasts. 

Campaigns like this do real damage to breast cancer patients. And I know that you know this, because right next to where this image appears on the YSC Facebook page, you’ve got a video about how breast cancer surgery impacts women’s feelings of self-worth. 

I expect this kind of insensitivity from a porn industry executive trying to get some cheap publicity. But not from you, YSC. I expect you not to make women who have had a body part amputated feel worse about themselves. I expect you to know that this type of campaign is absolutely the worst kind of cause marketing. And yet, there is your logo at the bottom of the poster, and there’s this image proudly displayed on your Facebook page.

Speaking of your Facebook page, several of us pointed all of this out to you in comments on that photo there. Let me quote your complete non-apology here:

“We apologize if this post was offensive. We would like to clarify that the “Boobies Make Me Smile” slogan is not a YSC slogan, it is the name of Spencer’s Foundation. Our bracelet is called “Survivor Strength.” We partner with Spencer’s to promote breast health education among their young consumers and over the last 8 years have reached countless young women to empower them to be their own best health advocate. It is always our goal to inform and empower young women with breast cancer, and we’re sincerely sorry if this post was insensitive.”

If?!?! If this post was insensitive? If this post was offensive? It’s your goal to empower young women with breast cancer, while you trivialize their disease and marginalize those of us who have lost a body part to it? Really? And how is the fact that Spencer’s foundation is called “Boobies Make Me Smile” a reason not to be offended? You’re telling me that you actually decided to partner with an organization called “Boobies Make Me Smile?” Are you kidding me? 

I know you need money to support the important programs you run. We all understand that. But you undercut the power of those programs and the support you give to young women with breast cancer when you turn around and partner with an organization whose very name is offensive. How can we take you seriously after this? How can we believe that you really have our backs, when you turn around and throw us under the bus to make a quick buck?

I beg you, before further damage is done, to withdraw from your partnership with Spencer Gifts and give them their dirty money back. If you don’t, I know an awful lot of young women who will no longer be able to support you in good conscience, myself included.

Sincerely,

Beth Caldwell

Crazy Cancer Cures: Alkaline

Posted on by Beth Caldwell

You guys! It’s time again for another in my series on Crazy Cancer Cures, where we discuss the many dumb ideas I’ve heard about alternative ways to cure my cancer. Today’s is one I actually first heard from my oncologist in the very early days after I was diagnosed. No, he didn’t suggest this, he told me about it because it’s so completely bonkers. When he told me about it, I thought he was making it up, because not only does it seem like something that wouldn’t work, it sounds dangerous and unhealthy too. And yet, it’s out there all over the internet and there are people who seem to believe it.

OK, here it is: drinking alkaline. No, seriously. There are people out there who believe that drinking alkaline will cure their cancer. The idea is that cancer thrives in an acidic environment, so if you can change the pH balance of your body to be more alkaline, your cancer can’t grow. A less insane-sounding version of this supposed cure is eating a lot of high-alkaline foods, instead of drinking alkaline, again with the idea of adjusting your pH balance.

The problem with this Crazy Cancer Cure, beyond the idea that drinking straight-up alkaline is no better for you than drinking acid, is that you can’t just adjust your pH balance this way. If you eat too many acidic foods or too many alkaline foods, your body just pees out the excess acid or alkaline. Unless something is seriously wrong with your kidneys, your body’s pH balance isn’t going to fluctuate more than a teeny bit. 

Now, it’s true that cancer cells can’t live in a highly alkaline environment. But you know what else can’t live in a highly alkaline environment? ALL THE REST OF YOUR CELLS. That’s why you pee out any excess alkaline. Don’t believe me? Perhaps you’ll listen to the nice folks from Cancer Research UK. 
You know, the thing with all these Crazy Cancer Cures is that they take a tiny grain of truth–cancer can’t live in a highly alkaline environment–and they make some crazy sweeping generalization from it that doesn’t make any goddamn sense. I just…look, I know some people aren’t all that educated, but if you really don’t know that much about the human body, how about you stop emailing your friends who have cancer with whatever lunatic theory you read on the internet? Just a suggestion.

The Cat’s Out of the Bag

Posted on by Beth Caldwell

You may remember that when I went to speak at a hearing at our state legislature last month, I asked The Boy what he thought I should tell them about why cancer research is important. As I told the House finance committee, “He said, ‘Tell them that without research, maybe even one of THEM might get sick, or even die.’ And my heart sank for a moment, and I asked him if he was scared that I would die, and he got very quiet and nodded. And the worst part of all this is that I couldn’t tell him that I’ll be OK, because that would be a lie.”

When I first thought about going to the legislature, I thought, “Maybe I should bring The Boy.” The Girl is still too young for such an outing, but at 8, The Boy is curious about my advocacy work and wants to participate. When I told him I might be going to some protests about cancer research funding, he said, “Can I come? Will you get arrested? I want to go to jail with you!” I laughed at him because A, I’m not getting arrested, and B, if I was, there is no way in fuck he’s getting arrested with me. Maybe if I live another 10 years and he’s an adult, but we all know the odds of that happening.

But a trip to a committee hearing seemed like it could be a good lesson for him. I want him to learn about speaking truth to power, and using our words and our ideas to convince people. These are important values for me, and I know it would be a memory that would stick with him, to watch his mom doing that.

On the other hand, I knew that for my testimony to be effective, I was going to have to speak about my prognosis. Up until now, we’ve carefully avoided that subject. I’ve told him things like “I’ll always have cancer, so I’ll be having treatments for it for the rest of my life” but we haven’t talked about the whole “rest of my life” part being a lot shorter than he expects. A sunny Thursday afternoon in a committee hearing didn’t sound like the best time for that conversation either. So, I gave up the idea of bringing him along, even though he really wanted to go.

Fast forward to after the hearing. He gets home from daycamp and he asks how it went, and I told him it was awesome, and The Hubs, without thinking it through, says “I recorded it so you can watch Mommy talking at the hearing.” Uhhhhhh…you mean the part where I repeatedly mention that I will die of my disease? But the cat was out of the bag, and I thought to myself, “He’s aware that death is a risk with cancer, we know that from what he told me to tell the legislators. Maybe it’s time.”

So I let him watch it. And when he heard me say “I will die” he turned to me, and said, “Mommy, are you going to die?” And I said, “Someday, sweetie, but not today!” in as cheerful a voice as I could muster. But being the child of a lawyer, he knows bullshit non-answers when he hears them, so he said, “But are you going to die of cancer?” And I said, “Probably…but, I have a very smart doctor, right? And he’s taking good care of me.” And he said, “OK” and his little ADHD brain moved onto other things.

But at bedtime that night, as I was tucking him in, he said, “Mom, I’m going to miss you when you die.” And I said, “Oh sweetie, I want to hug you right now.” And we hugged while I pulled myself together and I said, “We all miss people when they die. I miss my grandparents very much, and I know Nana and Papa miss their parents too. It’s normal to be sad when someone dies. But you know, we will always have our memories of them, so they’re not really gone.” And that seemed to bring him some comfort, and we hugged again. I walked out of the room, down the stairs, and halfway down the hallway before collapsing in a puddle of sobs on the floor.

But the thing is, I knew this day would come someday, when he was big enough that we couldn’t really hide it from him anymore. He figured out the Easter Bunny a couple years back, and when that happened, we got him excited about participating in hiding the Easter eggs for his little sister. And now that he knows Mom will probably die of cancer, he’s excited about the idea of coming to a die-in with me, and talking to elected representatives about funding cancer research to save his mom. He’s ready to be a participant in making the change . I didn’t know if I’d live long enough to see this happen, and even though it breaks my heart to see him scared and sad, it fills my heart with joy to get to see him reach this milestone.

Speaking of die-ins, a few of us in Seattle are planning one for here in town in the not too distant future. If you’d be interested in helping out with the planning (it’s not easy for terminally ill people getting chemo to organize an event, so we could use the help!) or attending it, drop me a note at cultofperfectmotherhood@gmail.com.

The Art of the Ask

Posted on by Beth Caldwell

I had a pretty awesome week last week. Not only did I get to do our first interview for the book my oncologist and I are writing about people with terminal cancers (do you have terminal cancer and want your story told? Send me an email at cultofperfectmotherhood@gmail.com!), but I also go to go down to Olympia, our state capitol, and testify before a committee hearing about a bill that would increase funding for cancer research.

How did this come about? This was the first time I’d testified before a legislative committee, and I’m not particularly politically connected these days. But I AM spending a lot of time on Twitter lately (don’t judge) chatting with other cancer people–researchers, metsters, people who survived early stage disease, that sort of thing. So I’m scrolling through my Twitter feed on Wednesday, and I see that Diane Mapes, who’s an awesome woman and cancer survivor who works for Fred Hutch, has tweeted that she’s looking for people to go with her to Olympia to testify before the legislature about cancer research funding the next day. And I was like “I’m free tomorrow, and I didn’t have chemo this week so I don’t feel like shit, I could go!” 

So I tweeted back at her that I was interested, and I also started messaging other local cancer friends to see if any of them were free. My friend Natasha Black was also available, and Diane was thrilled we could come. We got all the details about where and when and what the bill was about that evening, and I wrote my testimony. Having learned from my training through Living Beyond Breast Cancer’s Hear My Voice Program that it’s good to include the personal impact of your cancer in your advocacy, I wrote something pretty gut-wrenching about how this diagnosis has impacted me and my family. We also learned that you pair that story with an ask–in this case, research funding. 

The next day I met up with Natasha and we drove to Olympia. After a lovely lunch with a friend of Natasha’s who work there, we met up with the team from the Hutch, and found a spot to sit down and talk through our testimony. Now, the thing about committee hearings in our legislature is that there is very very limited time for public comment. Like, they usually give you only one or two minutes. My prepared remarks were more like 3 and a half, so I picked some stuff to trim, and then let the Hutch government relations guy (a really delightful man) read what I wrote to see if it fit the bill. He read it, and when he finished and looked up at me, he looked like he was going to cry. And I got a big grin on my face and said, “Right??? Nailed it!” And he was like “You totally did” and I said “Do you need a tissue?” Because I’m actually an asshole. LOL!

We also talked with a woman from American Cancer Society, and she gave us tips on testifying. She said to mention that we had cancer up front, because they were unlikely to cut us off if we went over time if the committee members knew we had cancer, but also said not to go too over because we didn’t want to annoy the committee members. 

Then we headed off to the committee room to sign up to testify before the hearing began. The hearing actually covered two bills–the first one had something to do with solar panel subsidies and was quite possibly the most boring thing I’ve ever sat through. Which is saying a lot, because I went to law school. The committee members seemed as bored as I was and there was plenty of fidgeting in their seats and whispering among the audience.

Finally it was time for the cancer research funding bill to be discussed. The first people who came to testify were all representatives of retailers of tobacco products, like 7-11 and a grocery store association, that sort of thing. All of them opposed the bill because it would put a bigger tax on cigarettes and other tobacco products, and that would cut into their bottom line. They all said that of course they support cancer research, just not through this tax. I couldn’t help but roll my eyes. 

Anyway, then it was my turn to talk. I was the first of the speakers in support of the bill, and we did that on purpose because I was the one with the terminal cancer, and the one who is currently bald. Here’s a link to the video–I’m at about the 55 minute mark. 

http://www.tvw.org/index.php?option=com_tvwplayer&eventID=2015060078#start=3356&stop=3519

As you can see, before I spoke, everyone was still fidgeting and there were plenty of people still whispering to each other. And then I started talking, and it was like the air had been sucked out of the room–everyone stopped. And I knew they were listening. It was SUCH a good feeling. When you have cancer, there is so much out of your control–how you feel, whether it progresses–so to have a moment where I felt that I was doing something, that I was speaking for my community and actually being heard, that was powerful. That meant a lot to me.

Natasha spoke after me, and her words were so moving too, it was really powerful. She has such horrible side effects from her treatment that are lingering months after the slash/poison/burn is over–as do so many cancer patients. And just as the ACS person had said, they didn’t cut us off when we went over time with our testimony. LOL!

After we finished speaking, that woman who spoke just before me, from the grocery industry, came up to me and Natasha and thanked us for coming and wished us all the best. You guys, if I hadn’t known that I was on TV right then, I would have told her to go fuck herself. I mean, I get that’s their job and whatever, but the assholery one must engage in to oppose cancer research funding because it’ll cut into the money you make selling cancer sticks, ooops, I mean cigarettes…like, honestly I wanted to say to her, “If you care so much, how about you take the profits you make from selling carcinogens and donate it to Hutch? Oh right, because you don’t.” But, because I knew I was on TV, I just smiled politely and shook her hand. 

  
Then the folks from Hutch spoke, including Diane and another Hutch person who survived Hodgkins, and also the Hutch government relations guy, and a brilliant Hutch researcher. I felt like we each laid out our case about why research was important, from several different angles. 
And then we headed out of the hearing room and high-fived each other. The committee chairman and another representative came up to us in the hallway and told us thank you for coming and sharing our stories and how much they appreciated hearing our voices. That was pretty cool. And the ACS person said she doesn’t get moved by cancer testimony after hearing so much of it over the years, but we really moved her. It was good to hear that we’d done everything we could.

Then we headed outside, and took this picture:

 
I think a lot of folks feel really nervous about speaking to legislators. But you know what? They’re people, just like us. It’s not like they have magical superpowers that make them better than anyone else, and like, if you piss them off or something, they’re not going to shoot lasers out of their eyeballs or whatever. There’s no reason to fear them, and we have everything to gain if we can convince them to use their power to help us.

The bad news is, the version of the bill that the committee was considering didn’t pass. The good news is, a different version of the bill is still alive in our state senate. So, if you live in Washington, I urge you to contact your state senators and ask them to support SSB 6096 and the proposed striker amendment. The Senate bill creates a new cancer authority, funded by new revenue generated by greater tobacco enforcement, rather than by a new tax on tobacco. Personally I don’t care where the money comes from, as long as it gets spent on research. Because, as I said in my testimony, it’s what will keep me alive.

I enjoyed the experience of testifying at this hearing so much, I’m really hopeful I’ll have an opportunity to do it again as soon as possible! 

UPDATE JUNE 30: The Senate version of the bill passed both houses of the legislature by overwhelming margins and is being signed by the governor today! VICTORY!!! Thank you to everyone who reached out to the legislators, and thank you to those legislators and Governor Inslee for supporting this bill!

Summer Loving

Posted on by Beth Caldwell

School’s out for summer! School’s out forever! OK, not forever, but it may feel like it this summer, because it’s my second summer of active treatment. Last summer, you’ll recall, was the end of my first set of chemo, followed by mastectomy recovery. This summer, it’ll be chemo all summer.

I’m noticing that since I started chemo, The Kids have been more clingy. It’s to be expected–they can tell I don’t feel well. I’ve had to have two blood transfusions now because my body’s been gutted out by the chemo. I just have a lot less energy than I did before going back into treatment. It’s impacting my mood a bit too. I’m sad more, which is what always happens to me when I don’t feel awesome. And The Kids sense that, and want to spend more time with me.

Fortunately, we’re finding ways to make that happen even when fatigue keeps me in bed most days. Recently they started coming to our bedroom to cuddle with us in the mornings when they wake up. Which isn’t awesome when they wake up before 6, but most mornings it’s at a reasonable hour. We’re doing a lot of reading with them–I’m reading the Harry Potter series to The Boy, and The Girl really loves a book that my cousin gave her called Rosie Revere the Engineer. (I love it too, definitely one to check out.) We’re also watching movies together more often.

I know it seems lame to spend so much time indoors when the weather is nice, but that’s part of treatment life. I get out and about when I can, but with chemo happening almost every week, there are at least a few days a week when all I do is lie around. But the upside to all this lying around is that I get a lot more cuddle time than I otherwise would, while reading all those books and watching all those movies. It’s actually pretty awesome feeling all that love from The Kids.

I’m hoping as treatment goes on and I start getting into a better routine, I’ll be able to plan some outings for us around my fatigue days. The Boy asked if we could go to Great Wolf Lodge (did you know there’s a bar inside the splash park? OH YEAH!) and I’ve ordered a mastectomy swimsuit.  I’ll probably spend my time just laying near the wave pool, and shouting encouragement to the kids.

This is parenting with continuous illness. It’s not parenting the way other people do it. My kids don’t do organized sports and I don’t spend my weekends at soccer matches or little league games, because I’m too tired, and The Hubs has too much on his hands without adding stuff like that to the mix. We watch a lot of TV and read a lot of books and other people take the kids for play dates. It’s just simpler and slower than most families, and that’s OK.

Now, the interesting part about this is that the latest parenting trend is the 1970’s Summer. Have you read about it? The idea is that when we were little in the 70’s and 80’s, our parents didn’t sign us up for 4,000 activities. They just said “Get a popsicle and go outside to play” while they watched their stories. Well, now all the cool moms are doing 1970’s summers with their kids. Helicopter parenting is soooooo five minutes ago. How convenient for me, who literally can’t helicopter parent even if I wanted to, that the hot new thing in parenting is exactly what cancer is forcing me to do! 

You know, even before cancer, I was the type of parent who sat around with a drink shouting to my kids to go play in the ditch with their friends. So it’s not like this parenting style is actually that huge of a departure from what I would have chosen. But knowing that others actually CAN choose, and I can’t…I don’t know, it’s just rough. It’s getting harder and harder to read parenting blogs for me, honestly, because I see other moms agonizing about and defending their parenting choices, and I literally can’t be bothered to worry about most of that stuff anymore.

I never knew when I started writing this blog about the Cult of Perfect Motherhood that I’d end up with this particular perspective–that I’d see exactly how ridiculous it is to obsess over the things that modern middle class American moms obsess over, because terminal cancer has put it into such stark relief. It’s pretty powerful deprogramming…but I definitely wouldn’t recommend going about it this way.

Totally Tubular

Posted on by Beth Caldwell

Since my cancer diagnosis, I’ve spent a lot of time in various kinds of tubes. MRI tubes, CT tubes, bone scan tubes. Before cancer, I’d never experienced any of these tubes, and I’ve recently realized that folks may not know what these scans entail, and the differences between them. Let’s discuss, shall we?

All of the tube scans require you to lay very, very still in an enclosed space. So, if you’re claustrophobic and you get diagnosed with cancer, well, you’re basically fucked. And if you wiggle too much during any of the scans I’m describing, the results are gonna be bad, bad enough that you may have to redo portions of the scan. Which means more time in a tube. Luckily for me, I’m not claustrophobic, and also, I’m very very good and laying still. Ask me to run a marathon and I’m hosed, but being lazy? Now THAT is my skill set. I get complimented each scan on how well I did at not moving.

My favorite thing about tube scans is the warmed blankets. Because they want you holding still, they don’t want you too cold, because then you’d be shivering, and that’s no good. So, they have blankets kept in a warmer, and they’ll give you as many of them as you want. I wish I had a blanket warmer in my house, because warmed blankets are truly one of the only perks of having all these damn scans.

Each of the tube scans is a little different, so let’s take them one at a time. 

First off, there’s the MRI. An MRI is a very very very loud machine that uses magnets to scan you. When I say loud, we’re talking ear plugs plus big earphones to protect your hearing. You can actually hear the machine running from the next room, despite heavy doors and thick walls around it. Because an MRI uses magnets, you can’t wear any metal at all, including your wedding rings, and in fact, some MRI places I’ve been use a metal detector on you (like a hand-held one) before you go in the room, to make sure you didn’t accidentally forget about some metal you’re wearing. MRIs take lots of pictures that are, like, slices of you, like, the pictures are layer upon layer, if that makes sense. 

I’ve had both breast MRIs and brain MRIs. The breast one invlovles laying on your stomach and dropping your boobs into holes in this, like, contraption thing so they can hang down and have clear pictures taken. The brain one involves having your head strapped into a contraption like you see in the picture below, so your head doesn’t move at all. My MRIs have all come with an IV, because they take some pictures, and then they give you a contrast that makes abnormal stuff turn up clearer on your scan.

  
Usually when I’m in an MRI machine, they offer to let me listen to music, and I always ask for Sinatra. Something about Old Blue Eyes just makes me feel happy. I think every MRI place in Seattle must use the same music service, because the first song they play is always Fly Me to the Moon. I always lay there thinking “I’d like to be in Acapulco right now.” Sometimes the machine is so loud, I really can’t hear the music, which bums me out.

Next up: the CT. A CT also takes pictures in slices like an MRI, and it’s better at seeing bone stuff than an MRI is. MRIs are great at seeing soft tissue, but they’re just not as versitile as a CT. From the patient standpoint, a CT has the benefit over an MRI of being a pretty quiet machine, but it comes with a major downside: you have to fast before it, which is why I always try to schedule mine first thing in the morning. Also, you have to drink this stuff.

  
I don’t really know what’s in there, but I’ve yet to find a flavor of it where I’m like “Yum, that was delicious!” I hear the mochachino flavor isn’t bad, but alas, I’m usually subjected to some “fruit” flavor. If you’ve had a diabetes test, like a gestational diabetes screening during pregnancy, and had to drink some fruity sugar crap for it, this tastes less horrible to me, but still not good. I tend to chug mine, so I don’t have to taste them for too long. CT scans also come with an IV, because they inject you with contrast stuff partway through, similar to the MRI experience. The machine looks pretty similar to an MRI machine.

Then there’s the PET CT. The CT part is the same as I just described, but the PET part makes it extra special. In a PET scan, you’re injected with some seriousy radioactive stuff that attaches to certain types of cells–sugar cells, cancer cells, and muscle cells that are all worked up. Because all we really want to see with a PET scan is the cancer cells, they have you not only fast before your scan, but also make sure your last meal is very low in carbs, so there isn’t much sugar in your system. In addition, before you have your exam, they give you Valium and leave you in a quiet room with some of those lovely heated blankets for an hour or so, so your muscles are super relaxed. No cell phones, no TV, no music, no nothing–just a soothing picture on the wall (the place I usualy go has one room with a sunrise, and one room with Mt. Rainier), a comfortable recliner, and your thoughts. I always, ALWAYS, fall asleep in that room, even though I’m a horrible napper. Valium is a hell of a drug.

Then, when you’re super calm, they put you in a tube, and the scan is pretty much the same experience as an ordinary CT scan, just a bit longer because they’re doing both a PET and a CT in the same session. Because of the long time you have to relax before the scan, and then how long the scan takes, and the fast you had to do before hand, I’m usually RAVENOUS when a PET CT is over. It’s become a tradition for me to have a giant Red Robin burger after a PET CT.

And finally, there’s the bone scan. Bone scans are used to see abnormalities in your bones, and in the cancer world, that means finding tumors in/on your bones. I had one when I was going through my initial diagnostic period. To me, the bone scan was the most bizarre of all the scans. They give you something radioactive, and then you hang out for a bit, and then they put you in the bone scan machine, which looks like this:

  
See that big flat piece sticking out? Well, in my bone scan, that thing was like 2 inches away from my face as the scan started, and it sloooooowwwwwllly moved down along my body. They did one scan straight on, and one scan sideways like you see in the picture. I have a friend that the thing almost smashed her feet when she got scanned one time. Thankfully, the techs who did mine were paying better attention. 

So, that’s what tube scans are like in cancerland. If you’ve got questions, feel free to ask them in comments!

Not a Survivor

Posted on by Beth Caldwell

I’m gonna rain on everyone’s parade today. I know I sound all super negative these days–maybe it’s having had so much disease progression, maybe it’s feeling like crap from chemo…or maybe it’s just that after over a year of living with metastatic breast cancer, I’ve stopped being polite and started getting real.

If you’ve been reading my blog for a while, y’all know that metastatic breast cancer is incurable. Sure sure, we all hope research will swoop in and save us, and exciting breakthroughs make headlines every day, yadda yadda yadda. Except, we’ve heard about exciting breakthroughs lots of times over the years, and yet, the average lifespan with MBC remains 2-3 years. So, let’s face the reality as it stands today: I will die of or with my disease. (And MBC isn’t the only cancer that falls into the incurable cancer category–many cancers have even worse average lifespans than MBC, and with even less research dollars than us breasties get.)

Which brings me to the topic of this post: the word “survivor.” People always ask me why I don’t like that word, and why I don’t call myself a survivor. Lots of folks don’t understand why it’s such a loaded word for many metsters, why it makes us feel so excluded from the broader cancer community that has a legitimate chance of living a full lifespan and dying of something other than cancer. I can’t speak for everyone, because we all come at these issues a little differently, but I can explain where I personally am coming from.

Let me use an analogy, because y’all know I love analogies. Say you’re in a plane crash, but you don’t die instantly–instead, you linger on in a coma for a day or two, and then you die. Would you say that you survived the plane crash? Of course not, because you died. That day or two of suffering from your injuries doesn’t change the fact that the plane crash was the cause of your death. You didn’t survive that plane crash, you died from it. It killed you.

Or how about another analogy: my grandfather served as a bombadier in the Korean War, but he died when his plane went down during a bombing mission. Would we say he survived the war? Of course not, he died in the war. That he flew quite a few missions before he died doesn’t make him a survivor of the Korean War. 

Well, that’s what metastatic breast cancer is like. We might not die right away–we might suffer through treatments for a while, but eventually, nearly all of us will die of our disease, and 100% of us will die with our disease, because it is incurable. So, how can I be a survivor of cancer? I can’t, of course. How can you survive something that will eventually kill you?

For me, hearing the word survivor is a constant reminder that I’m different from non-terminal folks. It’s a button that people push, a button that says “That will never be you. You’re going to die.” I don’t really enjoy thinking about my death if I don’t have to, so I wish people would stop reminding me of what will never be. I will never be cured. I will not survive my disease. And you’d be surprised how often you see the word “survivor” in cancerland. Yesterday was some sort of national survivor day, and I know of two cancer conferences that happened over the weekend with the word “survivor” in their name. I didn’t attend either of these conferences. Just hearing the title of them turns me off and makes me feel like they aren’t for me.

What word do I use instead? I usually call myself a metster in the breast cancer community, and a cancer patient outside that community. I think some folks don’t like being called a patient because sometimes being a patient feels more like being an object than a person. But for me, I mean, it’s not like I can get away from the reality of treatment. I’m a cancer patient, and I will be until I die. What I’m not, and never will be, is a cancer survivor.

What’s Treatment Like: Chemo Again

Posted on by Beth Caldwell

It’s #MetsMonday again, and I’ve just finished my first cycle of Chemo 2015. It’s been an interesting few weeks. Let me recap.

So, let’s go back to last year’s chemo for comparison. I was on two drugs, cisplatin and etoposide, on a three-week cycle. I got both drugs the first week, and then was free the rest of the 3 weeks. Cisplatin in particular is an extremely harsh drug, so I spent most of the first week of the cycle doped up on antinausea medications that made me sleepy. Then I’d stop taking those meds and kind of wake up and say “Where am I, what day is it, what did I miss?” And then I’d go back to work, because I was still working then, and feel relatively normal.

This time around, I’m on carboplatin and paclitaxel, on a four week cycle. Carboplatin is similar to cisplatin, but a bit less harsh, and paclitaxel is a relatively mild drug, but I mean, it’s still chemo. The first week, I get both drugs, and the second and third weeks I get just the paclitaxel, and then the fourth week I’m off. Paclitaxel can be given in a higher dose once per cycle, so I wouldn’t have to come in every week, but that would increase the risk of me getting peripheral neuropathy. So, weekly it is.

The first week of this first cycle, I had my infusion on a Wednesday, and Thursday I felt fine. Well, as fine as I usually do–I get tired every afternoon around 2PM and just need to lay down, but that’s just my current “new normal.” No nausea, no new fatigue. My oncologist emailed to ask how I was doing, and I told him I’d folded a bunch of laundry and done the dishes and asked if these were real chemo drugs. He wrote back and said I was not allowed to fold laundry or do anymore dishes–doctor’s orders, he said. Best. Doctor. Ever.

Of course, my hubris was punished, because on Friday around noon, I started to feel a wee bit queasy and took a Zofran, and by evening I had a horrific migraine. It was brutal–I was horribly nauseous and sensitive to light. I think what happened is this: the drugs they gave me on Wednesday for nausea are similar to Zofran, and last a few days. So, I think the migraine was because I’d OD’d on Zofran. The next morning the headache was gone along with the nausea, but by then, more serious fatigue had set in. I stayed in bed all day Saturday, and on Sunday–Mother’s Day–I managed a shower before deciding I needed another day in bed. Luckily the kids came and cuddled with me and we watched movies together, so it was a pretty nice day.

The fatigue was less bad the following two days, and then it was time for week 2 and more paclitaxel on Wednesday. Thursday at 4AM, I woke up with horrible chills, and at 7AM I took my temperature and it was 100.8. I emailed my oncologist and asked for instructions, and he emailed back and said “I’ll be in the office at 8AM and you should be there too.” So, off I went, feeling pretty weak. They hooked me up to some fluids and drew some blood, both to check my red and white blood levels and to do a culture to see if I had an infection.

When the blood work came back, it showed that my hematocrit had dropped from 27 on Tuesday, to 22 two days later. My oncologist said “This has to be a mistake, we’ll run the test again.” But sure enough, the second test came back with my hematocrit at 21. So, my oncologist sent me across the skybridge to the main hospital building for a blood transfusion. One of the nice nurses wheeled me there in a wheelchair, because I was still feeling so weak.

By this time, it was lunchtime, so The Hubs (who stayed with me the whole day, bless his heart) went off to get me some food, and the nurses in the main hospital typed my blood–twice, because that’s standard protocol for first-time transfusion people–and then they put in the request for some blood for me, which takes some time to get delivered from the blood bank. I got two bags of blood, and it took about 5 hours to do the transfusion. 5 hours. Luckily, the hospital fed me dinner. By the time we left the hospital, my hematocrit was 29 and it was 10PM. That’s right, I spent 14 hours at the hospital that day. (Thank goodness for friends and my parents, who helped out with the kids for us.)

The transfusion incident scared the shit out of everyone except me. Maybe I’m naive or in denial or something, but I trust my oncologist to be able to handle stuff like this, and he did. It was a long and unpleasant day, but it was just a day. And the next day, I woke up feeling AMAZING. Like, better than I had in months. Which was great, because that night I was signing books and doing a reading at MamaCon, which was a BLAST and you all should attend next year! The feeling good continued for several days, and when I had my blood draw before my third week of chemo, my hematocrit was at 34, which explained the sudden burst of energy. After that third infusion, I didn’t need any nausea meds and my fatigue level was at its usual 2PM exhaustion level through the rest of the cycle. 

My hair started to fall out the day of that third infusion, like, in clumps, so I had The Hubs shave it off that night, in the back yards, with the kids watching because it’s less shocking for them that way. Last year when we shaved it, I cried and cried and I hated looking at myself in the mirror, because I still wasn’t used to seeing Cancer Beth. But now I’ve been Cancer Beth for a long time, and I’m slowly getting used to seeing her in the mirror. 

So, this time around, losing my hair was much less emotional for me, and I’ve mostly been going around bald and not feeling self-conscious about it. I did wear a wig to The Boy’s birthday party at his request, because my head was still kind of stubbly and we both agreed the wig would look better in pictures. And sometimes I wear a hat, because you’d be surprised how cold your head gets without hair on it–and on sunny days, I don’t want to get sunburnt, so I wear my SPF hat. But otherwise, I’m just rocking the baldness.

This week the cycle starts all over again, with carboplatin and paclitaxel. My doctor is convinced it was the carboplatin that gutted me out and made me need the transfusion, and he suggested lowering the dose of carboplatin. My reaction was “THE FUCK YOU WILL.” (Literally, that’s what I wrote back to him.) Because I want to gut out as much of the cancer as I can, and I don’t mind feeling like shit and getting transfusions if it means I can get to having no evidence of disease. 

Is chemo fun? No. But, it’s a necessary evil. It’s what I hope will buy me enough time to see The Girl start kindergarten in 2017, which is the most important goal for me at this point. I’ve got just over 2 years until then, which would put me about 4 1/2 years from diagnosis–longer than the average livespan for someone with mets. That’s why I want to be aggressive with my treatments. I know it’s hard for the people around me to see me go through chemo, but I’ve told them they need to grow a thicker skin, because this is important to me. 

Someday I hope there will be better treatments for people with cancer. Someday I hope we’ll look back on the chemo era as positively medieval compared to the new treatments to come. Unfortunately, that day looks to be a long way off, because we aren’t spending enough on cancer research, especially research into metastasis. I encourage all of you who don’t want to see me and other cancer patients suffer through chemotherpy to donate to research-oriented chartities like Metavivor. 

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.