Crazy Cancer Cures: Black Salve

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. I’m gonna warn you not to google this one unless you want to see pictures of people with holes burned through their faces. No, I’m not kidding.

In the olden days when modern medicine meant leeches, people would sometimes use salves on skin conditions called “black salves,” so called because they left a big black scabs on your skin. What made those big black scabs? Well, black salves are made of stuff that will burn your skin, like zinc chloride and bloodroot. So, the idea behind using them to cure your cancer is, you rub it where your cancer is–usually skin cancer, but also other cancers including breast cancer lumps that you can feel–and BAM, the black salve will suck the cancer right out of you. Hooray!

I should note at this point that it’s illegal to market black salves as a cancer cure in the US. Because, no, they don’t suck the cancer out of your body. They just burn the fuck out of your skin. Which is really fucking painful. One “testimonial” from someone who claimed black salve sucked out her breast cancer said she wouldn’t recommend you try it at home unless you have morphine on hand. I’d also like to point out that bloodroot is strongly associated with oral premalignant lesions. 

Like, do people not realize the red flags here? Are people actually just that stupid that they’d put something on their skin that hurts so badly that you need morphine and think “Hooray, I’m cured”? WHAT IN THE ACTUAL FUCK. And for those of you in skin cancer land, why on earth would you choose this over having your skin cancer cut out? 

Please, I beg of you: do not try this shit on your cancer. And if you do, please, I beg of you, don’t send me a photo of the giant hole it burnt in your skin, because I’ve already been traumatized enough.

My Cancer is Rarer Than Your Cancer

This post probably won’t mean much to folks who aren’t cancer geeks, but if pathology is exciting to you, read on!

So, you may remember that when I was initially diagnosed, the pathologists who first looked at my biopsy, at the hospital where I get treatment, said that my cancer is neuroendocrine breast cancer. Neuroendocrine breast cancer is ridiculously rare, like 20 U.S. cases per year, out of about 240,000 total breast cancer cases. Neuroendocrine tumors in general aren’t that common–about 12,000 U.S. cases per year, and they typically grow in the intenstines, pancreas or lungs. 

When I had my second opinion, they sent that same biopsy sample off to a different lab, for a different pathologist to look at it. That pathologist said it was invasive ductal carcinoma with neuroendocrine features. Now, invasive ductal carcinoma is the most common form of breast cancer, but it having neuroendocrine features isn’t that common. My oncologist and I scratched our heads at that one, but moved on with a chemo regimen that would be effective on both breast cancer and neuroendocrine cancer. That way, all the bases were covered.

When I had the biopsy of my sternum tumor to confirm that it actually was cancer, the first pathology lab looked at it and said, “Yep, neuroendocrine breast cancer.” That same lab did the pathology on my liver biopsy this year, and sure enough, they found it to be neuroendocrine breast cancer.

At that point, I asked my oncologist if we could send my samples to a third lab, to act as a tie-breaker. So he did–he found a guy at the University of Pennsylvania who’s well respected, and had him look at it. And what he found in that initial sample from my breast was ductal carcinoma in situ, along with neuroendcrine breast cancer. Which completely blew my mind.

You see, ductal carcinoma in situ is also referred to as Stage 0 cancer. When you hear about the increase in diagnoses of cancer that comes from mammogram screenings, most of that is DCIS, and it’s also the center of the debate about overtreatment. Most DCIS won’t ever turn into real cancer–in situ means “in place”, because it hasn’t spread out of the duct it’s in, so it’s not dangerous. But the problem is, we don’t know which DCIS will turn into an invasive cancer, or will end up fostering a happy home for an invasive cancer. Which is why doctors treat it like it was an invasive cancer–nobody wants to look back a year later and say “Ooops, we should have cut that out of you, because now you have a more serious, harder-to-treat cancer.”

Hearing about this DCIS/neuroendocrine combo finding prompted my oncologist to talk to the second pathology lab and ask them more questions about what they found. Turns out, they’d also found DCIS and neuroendocrine breast cancer, but had classified it as invasive ductal carcinoma with neuroendocrine features, instead of calling it what it is. And the first pathology lab had missed the DCIS completely, which is why they just called it neuroendocrine breast cancer.

Does any of this really impact my treatment? No, but it does tell me a lot about how my cancer came to be, and psychologically, that’s somehow comforting to me. It appears that I was one of those very few people for whom mammogram screening at a very early age might have helped–except, there was no way to know that. I don’t have a strong family history of breast cancer, and I don’t have any genetic predisposition to breast cancer. My cells just went sideways on me, and as my doctor told me when I found out I was stage IV, there is nothing I could have done to prevent this. I did everything right based on the information I had. Cancer’s just a sneaky asshole.

At the same time, it’s kind of alarming to hear that three different labs came to three different diagnoses based on the exact same tissue sample. It’s a reminder that medicine isn’t a precise science–it’s extremely complex, and sometimes subjective. This is why it’s important to get second and third opinions.

So, now we know that my cancer is indeed rarer than your cancer, as one of my funny cancer t-shirts says. I’m totally gonna make an awesome research paper someday!

Crazy Cancer Cures: Drinking Breast Milk

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 that made my oncologist look like he was going to throw up when I told him about it, and that’s saying a lot because he’s a doctor, so he’s seen a lot of nasty shit in his career. Are you ready? Here we go…

Drink breast milk. Yep. Let that sink in for a minute.

Now, with both of my kids, I made a CRAPLOAD of breast milk. I mean, I could have easily fed twins with the amount of milk I was making. So, I had a lot of excess milk that we gave away to friends who were struggling to produce enough milk, or who had adopted a baby and wanted to feed it breast milk. But when I was producing milk for The Girl, The Hubs did some research into selling breast milk. Turns out it goes for a couple bucks an ounce on the internet if you’re giving it to someone with an actual baby, or if you don’t care what the buyer does with the milk, it can go for as much as $10 an ounce. I figured I was making about 350 ounces a week, of which The Girl needed about 250, leaving me 100 ounces a week to sell. That’s a shitload of money…but I just couldn’t get past the creepy factor of selling my bodily fluids to some weirdo with a milk fetish. Because EEEEWWWWWW.

I’ve read a lot of articles about people claiming that drinking breast milk either cured their cancer or put them into remission. Problem is, all of them were also getting chemo and other treatments. So, the idea that chemo, which science has shown to actually work on cancer, isn’t the thing that’s working, that it’s breast milk instead, is a pretty dubious proposition. Don’t get me wrong–there are lot of good things about breast milk, and there’s some recent studies showing that breast fed kids are less likely to get childhood cancers. But, my mom breast fed me, and I had a TON of breast milk in my boobs, and here I am with breast cancer. Anecdotal evidence cuts both ways, folks.

Then there’s the cost, which no insurance is going to cover. Even if you’re only paying $5 an ounce for it, and you drink what seems to be the most common “dose” of 8 ounces a day, that’s $40 a day, or $1200 a month. Unless you have a lactating family member who’s willing to donate that much milk to you, this is going to be an expensive proposition. Which is one of the main problems with a lot of these unproven therapies. You have to pay for them out of pocket, and for someone living off of SSDI because they can’t work anymore due to their cancer, the costs are simply out of reach. 

And then there’s the problem of germs. People on chemo and some other cancer treatments have depressed immune systems. Breast milk bought on the Internet is pretty much completely unregulated, so basically you have no idea how it’s been stored or whether the donor has some creepy infection or not. You can hope that it’s “not” but check out this paper and see how much of the breast milk bought online has bacteria in it. Let’s just say the odds are not in your favor.

Do I hope breast milk will someday be found to be a miracle cure for my cancer? Sure, I’m all about miracle cures. I’m also hoping to win the lottery and buy a bungalow in Tahiti, but I’m not holding my breath. 

Got a Crazy Cancer Cure idea you’d like me to write about? Leave it in a comment!

I love you Twitter but sometimes you confuse me.

I joined Twitter a few years back, when I used to write a blog about the horribly sketchy bus I used to ride to and from work. I figured with Twitter I could share interesting vignettes about what happened on the bus, like the time I learned that you shouldn’t get kicked out of rehab in the winter, because if you’re on the street, your heroin might freeze. Or the time a pimp passed out onto my lap. Good times. 

But to be honest, I never really “got” Twitter until maybe the last 9 months or so. Like most middle aged moms, I’d log onto it and be like “I have no idea what I’m doing and none of my friends are on here” and walk away from it. Then, suddenly, it just clicked for me, and I was finding more people whose content was interesting to me, and suddenly I came to love Twitter.

I now have awesome Twitter friends, most of whom are other cancer peeps, and we really have conversations there. I also use Twitter to keep up with information about cancer research and to connect with other folks working in the field of cancer. And of course, I follow a lot of very funny mom bloggers on Twitter too, because who doesn’t need a good laugh sometimes? I also participate in quite a few Twitter chats on healthcare topics, especially the weekly BCSM and BCCWW chats when I have time. It’s cool to virtually hang out, especially when fatigue keeps you in bed a lot.

I find my Twitter feed is waaaaaay better than my Facebook feed. The Facebook algorithm is horrible. It shows me a lot that I don’t care about. I love that Twitter is just a raw feed, and because everything is only 140 characters, scrolling past the unnecessary stuff is easier than it is on Facebook. If Twitter had all the bells and whistles of Facebook (the groups there are pretty sweet), and if all my friends were on Twitter, I’d probably abandon Facebook entirely.

Still, there are things I don’t get about Twitter. Sometimes I wonder how some of my Twitter followers find me. Like, a few months back, an Irish member of the European Parliament followed me on Twitter, and I was like “Dude, that’s so cool! Wait, how did she find me?” We didn’t appear to have any followers in common or to be following any of the same people; I didn’t see anything in her issue areas that had to do with cancer. I still don’t know how she found me, though I’m honored that she (or more likely one of her staffers) did.

Then there’s like the weird random users that find me seemingly just to try to get me to follow them back. Like, there’s a cancer zodiac sign one that keeps following me and then unfollowing me and then following me again, as though this time I might be like “Oh, yes, I do want to follow you” even though I’m a Libra. Like, fix your search, dude. Last week, a Florida-based law firm specializing in personal injury and criminal defense followed me, as did a Seattle area home building company. Both of those had me scratching my head, especially the law firm. Like, I’ve never been arrested and I don’t have cause to sue anyone–especially not in Florida. 

Recently someone whose user name was in a Cyrillic alphabet followed me. I looked at what they post and it was all click-baity articles, in English. I wonder how much money one can be paid to create random Twitter accounts and go around following random people hoping they’ll follow you back, and then posting stuff that needs page views? 

And of course, there’s my really big question: why hasn’t Taye Diggs followed me? He follows freaking EVERYONE, but not me. Like, he probably follows that cancer zodiac person, and not me. What did I ever do but love you, Taye Diggs?!?!? Do you know how many times I’ve listened to the Rent soundtrack?!?! 

Are you guys on Twitter? Do you get random people following you that you can’t imagine how they found you? Does Taye Diggs follow you?

Crazy Cancer Cures: Clay

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 Crazy Cancer Cure: clay. Apparently clay is excellent at detoxifying your body. I mean, that’s why people take mud baths at spas, right? Well, it turns out if you just detoxify yourself enough, your cancer will go away! Isn’t that great?

This one has been hard to research for me, not because there aren’t plenty of websites touting clay as a Crazy Cancer Cure, but because they’re so incredibly poorly written that they hurt my brain. An example:

“To cure cancer, tumors, ulcers of the stomach or intestines, to get rid of wounds and trophic ulcers, the affected area should be set not less than 4-5 clay widgets a day. In addition, it should be every hour to drink clay water to kill it in the body all diseased cells, microbes and bacteria.”

I mean, look, maybe I’m going to come off like some over-educated snob or whatever, but if you’re getting your medical advice from some website that can’t even put together a coherent sentence, instead of listening to an actual doctor, I mean, what the fuck? What in the actual fuck?

Then there’s the hippie-dippie explanation of clay’s seemingly magical properties, like this one: “Clay cannot be reproduced in a lab. Clay is the product of earth birthing itself in a new form.” Riiiiiigggghhhhhttttt. Also, did you know Jesus healed people with clay? And it’s what they put in the nuclear reactors after Chernobyl blew up?  

You know what’s interesting? Not one remotely legitimate medical website came up in my search on clay and cancer. Not anything written by an oncologist, a PhD, or a naturopathic doctor. Which brings me to an important point, which I will write in all caps because yes I am shouting at you clay-believing people:


Is the website where you’re getting your info from written by someone who has studied cancer? A scientist or a doctor of some sort? Or, is the website entitled “Starship Earth: The Big Picture”? Because, if it’s the latter, please, for all that is holy, do not share this ridiculous Crazy Cancer Cure with your loved ones who are actually dealing with cancer. Unless, like, you really want to drive them away, or you both have a very strong sense of irony. 

The Hunger Games

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

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

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.


Beth Caldwell

Crazy Cancer Cures: Alkaline

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

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

The Narwhal

The Boy’s school is all about project-based learning, and this year, they did a big project on whales. Each kid picked a whale (The Boy chose the sperm whale, which had me doing my best to hold in the giggles, because I am actually a 12 year old boy inside) and they wrote reports about them, and they went on a whale-watching field trip, and in art class, they made paper mache whales. Now, even though The Boy’s whale was the sperm whale (snort), somehow we ended up bringing home a 4-foot-long narwhal at the end of the year, the narwhal being perhaps the only whale that makes me snicker even more than the sperm whale.

This is what the narwhal’s fin looked like when it came to our house:  

I’m not sure how it was injured, but when The Hubs first told me about the narwhal, he said, “How would you feel about us bringing home a huge paper mache narwhal with a broken fin?” And I was like “A what?” And then there was our poor injured narwhal friend, riding around in the minivan. Luckily, my oncologist and his wife (also a doctor) came over to hang out, so we had two highly skilled medical professionals available to repair him with packing tape. The Boy served as the anasthesiologist and The Girl served as the nurse. She’s good with a blood pressure cuff. I’m pleased to say that the procedure was a complete success.

Isn’t it beautiful?

For several days after the end of school, the narwhal rode around in our minivan with The Hubs. Because, I guess the narwhal likes going on outings? I mean, who doesn’t, really? For example, when I went in for a blood transfusion, I took a selfie in the car, and you can actually see its golden horn in the background. YES, THE NARWHAL PHOTOBOMBED ME.

Still, it’s not awesome to have to live in a car, so I brought the narwhal into the house while cleaning out the minivan, and now we’re trying to figure out where to put it. I was worried that my friend Natasha, who’s been helping with decluttering my house (do you live in the Seattle area? You should hire her, she’s ridiculously good at this) will not be pleased to see that we’ve taken in a 4-foot narwhal…except, she’s awesome, so no, she thought it was fucking AMAZING that we have a narwhal living in our house now. In fact, I bet by the time you read this, she’ll have helped me hang it from the bathroom ceiling or mount it over the fireplace or wherever it ends up.

Although the narwhal is clearly happy in its new forever home, there is one more thing the narwhal needs: a name. And now I turn to you, dear readers. I’m too cheap and too lazy to run a genuine contest here on the blog (still haven’t monetized this bad boy, I’m clearly doing blogging all wrong), but whoever comments below with the best name for the narwhal will get a shout out from me all over Twitter and Facebook, and the knowledge that you’ve done a great service to a majestic sea mammal. 

In conclusion, I leave you with a classic of the internet to help inspire you as you ponder what the narwhal should be called.