Denial

My insurance company, the federal employee Blue Cross Blue Shielf plan aka FEP Blue, denied the drugs for my combination therapy. They’ll pay for doxil without even a preauthorization necessary, but they denied authorization for both of the immunotherapy drugs. We went with Avastin over the cabozatinib hoping they’d approve it, but they didn’t. 

So, now we appeal. It took a week for FEP Blue to send me the denial letter for the trametinib, and because it’s an oral drug, I have to be the one to file the appeal, so we couldn’t get started on that process until this week. The Avastin appeal has to be filed by #bestdocever and he didn’t get the denial until this week either. Because it’s not like it’s important to get this information quickly when the patient has terminal cancer.

I’m very grateful to have the team at Avera in my corner right now. Their patient advocate has written tons of these appeal letters, so she’s helping out with the appeal process. She’s also appling to Genentech (maker of Avastin) and Novartis (maker of trametinib) on my behalf to seek support via their patient assistance programs. I’m hopeful we’ll be able to get them to help without me going through the charade of legally divorcing my husband so I fit under their income caps.

Here’s the thing. When I look at the data on this treatment approach, and I see that the 30% of patients who couldn’t get combination therapy are all dead, and that 93% of the patients who got combination therapy are alive? Yeah, I don’t just see numbers. I see people. I see my friends. I see Michelle and Jill and Holley and Carolyn and Sarita and Adrian and Ishuan and Jean and Vickie and Jody and Maria and and and…and I think “What if they lived long enough for combination therapy? Would they be alive right now?”

I’m not gonna lie, I’m pretty depressed right now. I’m putting on a brave face most of the time, but it’s not fatigue keeping me in bed right now. It’s a sense that I’m fighting an uphill battle to stay alive. And I can’t help thinking, if it’s this hard for me, an attorney who knows how to navigate systems and has the ability to demand the best treatments, what hope is there for the broader cancer community to stay alive? What hope is there for my friends who are too sick to fight their insurance companies? 

When healthcare decisions are made based on costs and not on saving lives, this is the outcome. We see it happening all over the world, not just here in the US–talk to anyone in the UK about how NICE has made it impossible for them to get access to the cutting edge drugs that are standard of care in the US. But here the disparities between rich and poor, between savvy and unsavvy consumers, feel particularly cruel and despicable. It especially hurts when you realize that the annual cost of my drugs is about the same as one day of pay for an insurance company CEO. 

Does all this make you angry? Does it make you want to help? Good. It SHOULD make you angry. It SHOULD make you want to help. Here’s what I need from you. I want you to share this blog post around social media. Post it on the FEP Blue Facebook page. Tweet it at @fepblue on Twitter. And use the hashtag #SaveBeth. 

Tell them what you think of their decision to deny me the combination therapy that could keep me alive long enough to see The Boy start middle school. Tell them what you think of their business model that puts profits ahead of patient lives. Tell them that I’m not ready to die. Tell them that I deserve to live. Beg them for my life. 

Building a Mets Community Worldwide

This week, the great folks from Living Beyond Breast Cancer are running a campaign called #stage4lifer and they asked me to write a bit about taking action to combat metastatic breast cancer. I’m a proud graduate of LBBC’s Hear My Voice program and I urge anyone who wants to be an advocate for our community to apply to their 2017 program as soon as it opens! So I’m delighted to contribute to their campaign with this blog post–and I’d love to see all of you getting on social media to help share things with the #stage4lifer hashtag!

I’ve recently taken some time off from MET UP to deal with both the good (#EpicCaldwellVacay) and the bad (treatment). It’s not something I wanted to do, because for me, cancer activism is one of the few things that has made this experience, this life, make any kind of sense. I watch my friends dying, I watch my family suffering, and I just can’t sit idly by and NOT try to do something to change the landscape of metastatic cancer. But sometimes life and cancer get in the way of that work, and it’s frustrating for me to step away from it.

Which is why I was so excited to meet with the members of METUP UK when I was in London in August. That’s right, METUP has gone international! We met up (pun intended) at the lobby bar of my hotel and talked for hours like old friends–which I suppose we are, since we’ve been chatting on Twitter for a long time. 

The thing about metastatic cancer is that even though we live thousands of miles apart, our experiences of living with this disease are so similar. We’re struggling through treatments that make us bald or in pain or sick; we’re thinking about how to plan for our deaths that will come to soon; and we’re gutted every time one of our friends dies in this godawful plague we’re living through. No matter where I go, I see that metsters–that PEOPLE–have the same hearts inside. And we all desperately want to live.

Of course, there are some differences in other parts of the world. In Africa, the picture is much more dire. Patients in Nigeria, for example, often have to wait a year to get into treatment because of lack of cancer resources, and by then, many have developed metastatic disease. The primary treatment for them is mastectomy and radiation, which of course, isn’t effective for the systemic disease that is metastatic cancer. In addition, the cost of health care is too high for many people to afford, so they take out loans to pay for their radiation, then sleep on the side of the road by the hospital (because there’s only a couple of hospitals that do radiation in the entire country) because they don’t have any money for a hotel. Just imagine going through non-curative radiation treatment while sleeping by the side of the road.

I think it’s easy to think of people far away as The Other, as Not Like Us. But they ARE just like us. And they’re suffering. This is why building a metastatic community worldwide is so important–so we can lift each other up, and fight for each others’ lives. Once you meet another person with metastatic cancer, it changes you. Advocacy for metastatic cancer is no longer about you–it no longer feels selfish. It feels completely selfless and vitally important. We’re all going to have to be in this together, or we’ll die alone. 

An Open Letter to Vice President Biden

Dear Mr. Vice President,

I want to personally thank you for all you’re doing for cancer research right now. It’s so powerful how you’ve been able to take the indescribable grief of losing your son, and turn it into something that will hopefully spare other families from experiencing the loss your family has suffered. 

However, I have one major concern about how your Cancer Moonshot program is playing out: it doesn’t appear that you’re taking terminal patient voices into account in any formal way. I noticed when the Moonshot’s Blue Ribbon Panel was announced that there don’t appear to be any cancer patients on the panel who aren’t also researchers. I noticed one patient advocate listed–the only on the panel without an MD or PhD after their name–but no actual patients, and none of us who are dying from cancer. And, it’s playing out in a similar manner in the Moonshot Working Groups. Only a couple of the groups have anyone without a PhD or an MD after their name.

This is something that remains a serious problem in cancer land, despite recent advances in patient-researcher communication. We terminal cancer patients can be hard to coordinate with. We get sick, we have days where our fatigue overcomes us, and we can’t always travel to DC for high-level meetings with government and researchers because treatment gets in the way. And maybe that’s why advanced/metastatic patients aren’t usually involved in deciding what research questions get the bulk of the funding, and maybe that’s why funding for metastasis research is alarmingly low.

Many of us have horrifying stories about oncologists writing us off as soon as we’re diagnosed with an incurable cancer, sending us home to settle our affairs without even discussing the available treatment options. And a lot of times, cancer research feels like that. We’re out here dying, and we often feel that nobody is listening, because we rarely have a seat at the table. 

When the Moonshot was announced, I was so filled with hope. I sat crying with joy watching the State of the Union, knowing that someone who really gets what it’s like to lose a family member to terminal cancer was going to be spearheading the work. But seeing that no metastatic patients are part of deciding how to tackle the enormous challenge of saving lives made me cry in a different way. They were tears of anger and frustration and despair. 

I hope you’ll consider including metastatic patients as decision-makers in the Moonshot program. If you’d like, I’d be happy to send you a list of amazing patient-advocates with demonstrated track records of working collaboratively with researchers–people like Janet Freeman-Daily, who works on lung cancer issues, or CJ Cornelius,  who works on breast cancer issues. These patients can bring an important perspective to the Moonshot’s work, and their voices deserve to be heard. 

I look forward to your reply.

Sincerely,

Beth Caldwell

Co-Founder, MET UP

www.metup.org

Hate and Death

I don’t usually write about mass shooting incidents here on the blog. I cry every time one of them happens, and I wish desperately that they would stop happening, and I support Moms Demand Change. But writing about someone else’s pain is hard for me–I worry about further upsetting the families of the victims, because I’ve been known to seriously shove my foot in my mouth in these situations. 

But a dear friend of mine from the LGBTQ community reached out to me and some other cancer folks and asked us to stand up for her community, and she has stood up for the metastatic community. And she’s right–I shouldn’t sit quietly for fear of saying the wrong thing. We all need to say something, SAY SOMETHING, to show the LGBTQ community that we care about them, and that we have their back.

It’s not OK to hate people. It’s not OK to hate people because they don’t share your religious views. It’s not OK to hate people for who they love. It’s not OK to hate people because they’re Latino. It’s not OK to hate people. IT’S NOT OK TO HATE PEOPLE.

It’s not OK to shoot people. It’s not OK to shoot people because they don’t share your religious views. It’s not OK to shoot people for who they love. It’s not OK to shoot people because they’re Latino. It’s not OK to to shoot people. IT’S NOT OK TO SHOOT PEOPLE.

Nobody needs an assault weapon. Nobody needs extended clips for maximum murdering power. Nobody with a history of domestic violence should have access to any kind of gun. Nobody on a terrorist watch list should have access to any kind of gun. Nobody with a history of mental illness should be able to buy a gun. NOBODY NEEDS AN ASSAULT WEAPON.

I can only imagine the pain that the LGBTQ community is experiencing right now, but I want to wrap them all up and hold them close to my heart and tell them that I love them, that I’ll always stand by them, that their love is just as beautiful as mine. That no matter how many people try to shower them with hate and death, they have allies–we are their allies and we will stand with them to reject the ideology that says they’re less than us.

On this mets Monday, I hope that we in the metastatic cancer community will stand with our allies in the LGBTQ community who have supported us in our fight to stay alive. I hope that we’ll show our allies that we are also their allies, and ask how we can help them. I hope we’ll stand with them at Pride events this month, and call out homophobia and prejudice every time we see it. And I hope that the LGBTQ community will feel our love.

Combination Therapy, Motherfuckers!

So, here’s the thing about metastatic breast cancer treatment: you usually get one drug at a time. We call this single agent therapy. So, like, I’m on Xeloda right now, and that’s it. We get one drug at a time, and when that one stops working, we switch to another one, then another, until all the drugs are gone and then we die. This sort-of made sense when chemo was all we had, because being on multiple chemos at once makes you feel horrible. Wait, that’s not a strong enough descriptor of what it’s like, so picture this: vomiting every day, being to weak to get out of bed so you shit yourself, rashes, mouth sores, being able to die of a cold because you have no immune system to speak of…and that’s not even all of it. 

So, since you’re going to die anyway, I mean, why would a doctor put you through all that? The answer is, they wouldn’t. Instead, they try to buy you a few months here, a few months there, without ruining the average 33 month lifespan you have after your MBC diagnosis. 

This all made sense to me until I read The Death of Cancer, which blew my mind. Do you know why Hodgkins has a high cure rate nowadays? Because some doctors said “Fuck this, let’s just poison the shit out of this cancer until it’s GONE.” And they gave patients not one, not two, not three, but FOUR different chemotherapy drugs at once. It was called VAMP for short, and guess what? It worked. Because instead of just attacking cancer one way, they attacked it on multiple fronts at once. Instead of seeing the patients as terminal and trying to make them comfortable, these doctors saw the patients as people who should get to live normal lifespans, and they set about to make it happen.

After reading that book and talking to some smart cancer researchers, I’m now convinced that combination therapy is where it’s at. I see how the story ends for my friends who run out of drugs to try, or whose bodies become so fucked up by years of continuous single agent chemo that they can’t tolerate any further treatments. Fuck that. I don’t want to slowly decline for another year or two and then die. I want to send in all four branches of the military to fucking destroy the cancer.

I realize that this requires a dramatic shift in thinking for oncologists. Y’all have been trained that single agent therapy is the way to go because combination chemotherapy is brutal. And I bet it’s really hard for any of you with a conscience to watch your patients go through what combination chemotherapy can do to them. But, let’s talk about how little the outcomes have changed by just doing single agent therapy: in the last 40 years, the average lifespan after MBC diagnosis has gone up about a year and a half, most of which is spent feeling like shit anyway because even single agent chemo is pretty shitty. That’s it, 40 years of research, 18 months in improved survival. And, now we live in the era of substantially less toxic immunotherapy drugs. The time is ripe for a change of philosophy, from extending life a few months to turning our disease from a terminal one to a chronic one.

Apparently I’m not the only one who thinks this is a good idea, because I read today that Pfizer is planning to study a triple combination of immunotherapy drugs on patients with advanced cancer. IT’S ABOUT FUCKING TIME. I hope other Pharma companies and researchers will take this approach more often, so that it can start happening in the clinical setting ASAP. 

As always, my touchstone for cancer activism is how the AIDS movement made it possible for people with AIDS to live a normal lifespan. Know how they did it? Combination therapy. But it took them demanding better drug development and getting the people in power and the Pharma companies to listen for combination therapy to come about. I’m prepared to scale the walls of the FDA or the NIH if that would make the change happen–but I hope that it won’t be necessary, and that researchers will stop seeing us as dying, and start helping us live.

Being an Ally

This year during Black History Month, my son’s school, which is very white and very affluent, met with students from a high school in a poor neighborhood where people of color are the majority. They talked about what’s going on in their neighborhood, and how they needed help advocating for the school district to provide bus passes for all students at the school. They need the bus passes because it isn’t safe for kids to walk to school in their neighborhood, because there’s so much crime. Our school stood with the high school students at the school board meeting, to show that we were behind them and we care about their community.

Our students learned what being an ally is–it’s not about being part of the community that needs help, but about standing with them and using our privilege to help them. An ally is someone who not just cares about a community in need, but also does something to support them. And what that something is, is what the community says it needs, not what allies think that community needs. So, being an ally requires listening to the community and then asking “How can I help?” 

There’s been a division in the breast cancer world between early stage patients, and metastatic patients. Recently we had a #bccww chat where we talked openly about why this is happening. My theory is this: historically, metastatic patients have felt excluded from the larger breast cancer narrative about “beating” cancer and then celebrating with pink feather boas and “survivor” events. Metastatic patients don’t beat cancer, and we don’t survive cancer–we die of or with it, and mostly of it. 

For a long time, metastatic patients were mostly silent about it. It’s hard to speak out when you’re the only one in your community with metastatic breast cancer, and until the birth of social media, we often felt very isolated. But social media has been a game changer. We can now connect across geographic boundaries, and we don’t feel so alone–and so we’ve begun to speak out about how the early stage-focused narrative of breast cancer excludes us. And we’ve begun demanding that the breast cancer world include us and hear our voices. 

That’s triggered a backlash from some early stage patients who believe in the early stage narrative. Like Joan Lunden, they say we’re too bitter and angry and that we should follow the dominant narrative about staying positive–as if being honest about the reality of treatment only ending when we die is us just being “too negative.” And sometimes people in the mets community say things that belittle the experience of early stage patients, as though having early stage disease is no big deal. As if we’re not all experiencing something traumatic in having breast cancer, at any stage. Our traumas are just a little different–ours is ongoing trauma, and early stage patients’ is past trauma that has a continuing impact.

This division between early stage and metastatic breast cancer patients is a serious problem. We need to begin to build trust and understanding between us, because we in the metastatic need allies in the early stage cancer community. We need allies who see we’re in need and then do something to help us. 

I think it’s vital that early stage patients open their hearts and learn what life is like for metastatic patients. Too often our voices are still ignored, as are our pleas for help to the wider breast cancer community. Our needs aren’t part of the breast cancer advocacy that the National Breast Cancer Coalition pushes. While prevention is a noble goal, it ignores those of us who are already living with metastatic cancer and need help now, before we die. And when we bring it up, too often we’re silenced. Listening to us a necessary first step for early stage advocates to be an ally to our community. 

And that something is helping us advocate for research dollars to flow to better treatments for metastatic cancers. 90% of cancer deaths happen because of metastasis and yet very little of the research dollars flow to metastatis research. In breast cancer, it’s only 7%–and virtually all deaths from breast cancer are from metastatic breast cancer. I know some folks like Susan Love have questioned that figure, but if you look at how MBCA conducted its research–literally going through every grant to see what it area of research it was funding–you’ll see that this is a solid figure. And an alarming one. 

And, I hope people with early stage cancer will understand that we need allies because we’re dying. It’s not easy to be an activist when your ongoing chemotherapy leaves you too tired to get out of bed. It’s not easy to get the ear of people in power when you can’t afford to travel because you can’t work anymore. It’s not easy to demand change when you’re dead. The privilege of surviving cancer is something we in the metastatic community don’t have, and we really hope that early stage patients will use that privilege, their staying alive, to help us who cannot stay alive. We literally can’t do this alone–we need allies, who listen, and then ask “How can I help?” 

Hand and Foot: SO GROSS

Time for an update on how treatment is going: I’m dealing with some side effects of Xeloda. My fatigue is still real. That blood didn’t do much for my energy–I’m no longer anemic, but still fatigued. We went out to the coast and I was too tired to go for a walk with the family. I walked up the stairs of our beach house to get my coat, came back downstairs, and was like “Nope, that was all the energy I had.” I didn’t even get to see the beach while we were there, because I literally didn’t have the energy. Sigh.

Fatigue sucks, but it’s not my only side effect of Xeloda. I’ve also developed what is known as Hand-Foot Syndrome. Hand-Foot isn’t talked about much outside of cancer land, so a lot of folks who don’t have cancer aren’t familiar with it, so let me explain how it works. You take Xeloda, and after you’ve been on it a bit, you start developing changes in the skin on the palms of your hand and the soles of your feet. At first, I got weird brown spots on the palms of my hands, like really big freckles, and then the skin started to get really dry.

Then, when I went to Disneyland in January, I wore sensible shoes the whole time but still developed enormous blisters. They healed, but now the skin around my nails on my fingers and all along the bottom of my feet have become really peely. Like, every time I take a shower, my skin starts to slough off as soon as I get out of the shower. It’s alarmingly gross, like, seriously just disgusting amounts of dead skin just falling off.

And then a couple weekends back I started to get some neuropathy in both my hands and my feet. Neuropathy is like a numbing/pins and needs feeling, like your hands or feet fell asleep. Add that to the truly debilitating fatigue I’ve been having (it’s really hard to be an effective parent when you can’t get out of bed) and it was clear my Hand-Foot was getting worse.

#bestdocever had warned me of all this when I started on Xeloda, and recommended I use a cream with urea on my hands and feet, because there have been studies showing urea helps with the dry and peeling skin. So The Hubs bought me some Udderly Smooth (the container looks like a cow, and we call it “Mom’s Cow Lotion”), which I was using obsessively, and yet, the peeling continued. So I asked some friends who’ve been on Xeloda about what they used, and they recommended a cream called Revitaderm. It’s a whopping 40% urea. 

I put it on my hands and the dry dead skin started just sloughing off, like, immediately, like, the act of rubbing the lotion into my skin resulted in all this dead skin peeling off. Same with my feet. The skin underneath seems healthier and less peely, but holy hell, it’s really disgusting watching all that dead skin fall off. I keep joking about having leprosy. 

But the cream doesn’t help with the neuropathy, so I met with #bestdocever last week and we decided I should take an extra week off Xeloda (I am on a 2 weeks on, 1 week off schedule) and drop my dose. I had started on 8 pills a day, dropped to 7 in February, so now we’ll drop me to 6. That’s still a shitload of Xeloda, so I’m expecting my fatigue to continue, but I’m hopeful that the Hand-Foot will subside a bit. On this extra week off, the neuropathy has subsided, so that’s something. If it got worse and I couldn’t type, I’d lose my mind.

The thing with having terminal cancer is that nobody in their right mind would take a drug that keeps them in bed all day and makes their skin fall off–except that we know the alternative is, we die. This is why the experience of metastatic patients is so different than the experience of early stage patients. I don’t mean to minimize the experience of early stage patients because all cancer treatment is shitty and it leaves lifelong impacts, both physical and emotional. But for early stage patients, treatment ends. For us, treatment only ends when we die–and so we put up with pretty awful treatments, because the alternative is death. Xeloda is one of the gentlest chemotherapy available, and my side effects from here on out will only get worse. 

This is why I’m so passionate about research. I don’t want to live like this. I want to have energy, and I want my skin not to fall off, and I want my metster friends to not have diarrhea and need adult diapers. The only way to improve the quality of life of metastatic patients, and the only way for us to turn our disease from terminal to chronic, is to research new treatments for metastatic cancers. I know that scientists can help us live better, if only we’ll support their work.

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:

NOT EVERYTHING YOU READ ON THE INTERNET IS TRUE. USE YOUR FUCKING BRAINS, 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. 

Crazy Cancer Cures: Smelling Farts

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 by far, hands-down, my all-time favorite: that smelling farts cures cancer. Seriously, I can’t stop giggling about this one, it’s fantastic.

So here’s how this one got started: there was a study done at the University of Exeter having to do with using some kind of molecule to deliver hydrogen sulfide to cells to help preserve their mitochondria. This was done in a Petri dish in this study. Hydrogen sulfide is the stinky part of farts and rotten eggs. Ergo, smelling farts cures cancer. Wait, what?

Now, it’s funny, because duh, it’s about stinky farts. I mean, farts are just funny, always. I laughed pretty hard when the news articles about this study started floating around like hydrogen sulfide in our bathroom after The Hubs takes a dump. (He’s a good guy, though, he always turns on the bathroom fan when he poops.) 

But here’s the thing that’s kind of sad about this study: it actually points out a lot of what’s wrong in science journalism today. First, it’s really common for science journalism to make these same kinds of leaps in non-hilarious-fart-related articles. There’s a lot of articles about basic Petri dish science that end up with screaming headline about exiciting breakthroughs or cures right around the corner. As my oncologist likes to say, if you inject cancer cells in a Petri dish with just about anything, it’ll kill them. Cells in dishes just don’t like having things injected in them. But a lot of what we read about in the paper is just that: a Petri dish study. Too many science journalists, or whatever journalists write about these studies, don’t seem to get this.

Second, as in this case, the press releases about scientific studies often do their best to get press attention, as press releases are designed to do. So they sometimes/often/practically always oversell the research. Nobody’s going to cover your study on important but incremental and highly technical research that’s still ten years from bringing a new treatment to patients. How will that sell newspapers? No, instead you’ve got to talk about how that obscure research is exciting or promising or a breakthrough or some other buzzword that’s going to get your study covered in the media.

In this case, the study’s press release didn’t suggest a cure for cancer, but it did make sure to point out that hydrogen sulfide is found in farts, because farts are funny, and then talk about how the molecule they studied might have applications in cancer. Cancer’s a big one, that always gets headlines, and when combined with the fart thing, I mean seriously, that’s going to generate an awful lot of page views, isn’t it?

So, unfortunately for all of you who have told me that your dog or your loved one whose farts can clear a room, I’m sorry, those farts aren’t reducing your risk for cancer. Sorry, guys. But hey, at least we all got a good chuckle out of it, right?

At Least

It took me getting cancer to realize that America’s pastime isn’t baseball. It’s attempting to find silver linings no matter how dark the clouds are.

I can’t tell you how many people have tried to make…me? themselves? both? feel better about this whole cancer nonsense by pointing out things that aren’t horrible. They said “At least you have a nicely shaped head” when I went bald. Or “At least you have a good disability pension.” Or “At least you got to meet some new friends because of cancer.”

I did it too, to be honest. Until one day, when I was done with denial, I thought, “You know what? This situation sucks, why am I looking for the bright side in this as if that’s going to make it not suck? My nicely shaped head doesn’t change the fact that I have a terminal illness.”

Since then, “At least” has become my least favorite phrase. And it seems like Americans in particular use it ALL. THE. TIME. As in “At least more people weren’t killed in that 100 car pileup” or “At least 9/11 really brought Americans together in a spirit of community.”

Are you fucking kidding me? No. Just no.

Sometimes it worries me that we, as a culture, don’t seem to know what to do when people are struggling except to try to distract them from the thing that’s wrong. We tell people who experience racism that at least they aren’t living in the era of slavery. We tell people who are grieving the loss of a loved one in war that at least they died serving their country. We tell people who lost their job that at least they still have their health. It’s like we’re saying that if there’s anything in your life that isn’t shitty, that’s supposed to make it OK that something really bad happened.

I mean, look, I don’t think we should all just sit around moping and giving up all hope whenever something bad happens, and ignoring everything good that happens. But pretending like a shitty situation isn’t so bad because not every inch of it isn’t completely covered in manure? That’s dumb. And really dismissive to the person living with the poop.

Instead, how about we acknowledge that something is wrong and ask “How can I help?” How can I help the family of the police officer who was murdered? How can I help the person who is homeless? Why not take our American optimism and ingenuity and face the problem head-on and come up with solutions?

It seems like an umbrella is a lot more useful to someone caught in the rain than just pointing out that there’s a rainbow.