We’re Different

Posted on by Beth Caldwell

An idea has been buzzing around in my head lately that I’m struggling with, and so I’m writing it out here because I think it needs discussion. I really want to hear your thoughts on this.During the civil rights movement of the middle of last century, there were two competing approaches. There was the Martin Luther King approach of integration and working with people of all races to improve the lives of black folks. And there was the Malcolm X school of thought that said that African-Americans needed to take their power and lift themselves up, that integrating would always mean subjugation in a white system, and so black systems needed to be created.

I’ve always been an MLK kind of activist, and have continued to be so in my cancer activism. I am grateful for the support of people with early stage cancer or no cancer at all who see that metastatic patients are getting the shaft in a cancer system that celebrates survivors and ignores the dying. I continue to believe that in activism, allies are essential. This idea bouncing around my head isn’t about excluding anyone from the movement to save the lives of patients with metastatic cancer. 

But I’ve started to think that metastatic breast cancer can’t be incorporated into traditional breast cancer programs, that it needs its own system. Metastatic patients are just fundamentally different from early stage patients. We aren’t part of the pink party narrative, and we’re never going to be. Trying to integrate us into the existing work of groups like Komen or Warriors in Pink just doesn’t make sense, because that’s not who we are.

So maybe what we really need is a Malcolm X approach: we need the Komens of the world to create new programs for metastatic breast cancer, instead of trying to integrate us into their existing programs. Let the 3-Day be about pink feather boas and funny hats–let the early stagers celebrate their NED status–but ALSO put on major fundraising events that are appropriate to metastatic disease, where the funds go directly to metastatic research and metastatic support programs. Create a new system for us.

We’re starting to see this in other programs, like Pfizer’s Story Half Told, which isn’t pink at all, and in metastatic patient conferences like Living Beyond Breast Cancer’s Thriving Together Conference. I go to a mets-only support group, because my needs are fundamentally different than the needs of early stage patients. If LBBC can do it, why not Komen?

Imagine if Race for the Cure was transformed into something that is truly about cure. Take all the pink off of it–get rid of the dogs in bras and replace them with pictures of those we have lost, and those who we’ll lose too soon unless more research happens. Guarantee that every dollar raised by the race will go to metastatic research, not marketing or “awareness,” so participants know that what they’re doing is actually going to save lives. Imagine how much more money they’d raise.

And, imagine if we extended this paradigm to other areas of cancer. Imagine if NCI had a dedicated metastasis research program, with metastatic patient advocates and doctors specializing in metastatic cancer treatment and bench researchers focused on understanding metastasis. Instead of trying to incorporate metastatic cancers into the existing organ-of-origin structures of cancer research, give us our own programs.

Or, more radically, maybe what needs to happen is that we just ignore the existing breast cancer world entirely and start a new one. Maybe groups like MET UP and METAvivor and MBCN have the right idea: building new systems of research funding and lobbying, outside the pink world, across organs of origin. Maybe it’s just that I’m tired of trying to fit into legacy breast cancer organizations’ existing framework, because that framework doesn’t work for us, and it never will, and I’m not seeing those frameworks changing dramatically in my lifetime. Maybe Komen is a lost cause.

Anyway, that’s what’s been bouncing around my head. Let me know what you think of all this in the comments!

An Open Letter to Vice President Biden

Posted on by Beth Caldwell

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

Bad Dreams

Posted on by Beth Caldwell

Lately I’ve been having a lot of bad dreams. This isn’t normal for me–I often have weird dreams, or sex dreams, or dreams about nothing in general, but bad dreams are unusual for me. I’m guessing it’s because my brain metastases are back. Or rather, I have new ones.

I went in for my brain MRI recently knowing that something was probably growing in there. I haven’t had any symptoms of brain mets–no headaches, no dizzy spells, nothing neurological–but my tumor markers have been up, and if my cancer is growing in my liver and bones, which we saw on my last PET, I figured it was probably growing in my brain as well. So, I went in for the MRI expecting bad news, and that’s what I got.

So far, it’s two lesions. They’re both tiny, but frankly, when we’re talking about BRAAAAAAAAAIN tumors, I mean, any tumors are extremely bad news. The plan is to rescan in a couple of weeks and see if these are spots that grew before I switched to Afinitor/Aromasin, or if I’m gonna need to give up on those drugs and try something else.

And thus, it’s not surprising I’m having nightmares. I had one in which I was a terrorist and I shot up a building, then was on the run from the police. In another, there was blood everywhere. You don’t need to be Freud to interpret my dreams.

The other night before bed, I had a meltdown. Like, an epic one. I sobbed as I told The Hubs that sometimes I wish I’d never met him, because then I wouldn’t have him or the kids and I could just give up, cash out my 401K and go away and die. That sometimes I wish he would just take the kids and leave me. He said he already knew I felt that way sometimes, but he’s not going to leave me. Guy’s too much of a mensch for his own good.

I hate this life. I hate being afraid. I hate watching the people I care about suffering because my body keeps betraying me. I hate watching my friends die, and knowing my time will come soon. I hate knowing the kids will grow up without me. I hate the scans, the treatments, but mostly I hate the way I’m trapped in this life and I don’t even have the choice to give up. Because I’m a mom, and I can’t do that to the kids, or to The Hubs. I hate going on, knowing it’s all futile.

Here’s the part where someone comes in and says “Just stay strong, have hope, don’t give up.”  You know what? Fuck you. Fuck you to whoever says that. You have no idea how strong I have to be to live with the CERTAIN KNOWLEDGE OF MY DEATH and still get out of bed every day, still take care of my family, still do advocacy work, still take pills that might not even be working. Hope will not cure me. “Not giving up” won’t cure me. I will die of my cancer, and I keep on moving. I’m strong as a goddamn ox. SO WHAT?

And so, I have nightmares. And not just when I’m asleep. My whole life is one long bad dream now.

Hate and Death

Posted on by Beth Caldwell

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.

Sometimes there aren’t enough rocks

Posted on by Beth Caldwell

This morning I woke to the sound of my alarm that reminds me to take my morning Xeloda. I took my pills, picked up my phone, and saw that my friend Bethany had died. She went into hospice very recently, and I knew she was pretty sick, but it still comes as a shock, as a slap in the face, every time this happens. I called her best friend and left a message for her telling her that I love her, and we texted a bit. I said a lot of swear words.

Then I texted #bestdocever to find out how my tumor markers were from my blood draw on Friday. (The results didn’t come back right away like they normally do–we’d been texting over the weekend about it as he kept checking for them.) He called and said that my hematocrit is 26, so he’s happy to offer me a transfusion if I’d like one…and that my markers are up a bit since last month, so it’s time to abandon Xeloda. My cancer is a fast learner, just like me. We’re switching to Afinitor plus Exemestane, and we’re gonna see if we can add some other drugs to maybe get me some combination therapy, motherfuckers. 

I went for my Denosumab shot this afternoon, then went for the a type and cross blood draw. Now, I’ve had quite a few transfusions since Carboplatin fucked up my bone marrow last summer, and each time, they poke me once, fill two vials, and move on to the next patient. This time, it was apparently a new tech, because he said he had to poke me twice, once for each vial. I was literally too tired to argue with him, so I just let him poke me twice, once in my arm and once, more painfully, in my hand. I told The Hubs about it after and he was horrified.

This is how I feel right now. 

Combination Therapy, Motherfuckers!

Posted on by Beth Caldwell

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.

Why the Accelerating the End of Breast Cancer Act is stupid and pointless

Posted on by Beth Caldwell

I’ve about had enough of the National Breast Cancer Coalition. They ignored the requests of MET UP and Metavivor to include treatment for the already-metastasized patient in their Deadline 2020 plan–they say mets research is too hard, so their plan to end breast cancer is to just prevent future breast cancers and metastases, and I guess just let those of us with mets already to die off. Think I’m kidding? Read about how they treated the one metastatic patient in the room at their Artemis meeting. It was cruel, and bullying, and silencing of a patient who is actually dying of this disease.

So, this weekend, they’re having a summit and lobby day to promote their plan that excludes treatment for metastatic patients. It’s Senate bill 746, known as the Accelerating the End of Breast Cancer Act. Sounds exciting, right? What will this bill do to, you know, accelerate the end of breast cancer? It’ll create a commission. That’s it. That’s the whole bill. A commission. Because lord knows a presidential commission is all we need to end breast cancer, amiright? We just need a few handpicked people, like, say, the director of NBCC, and suddenly everything will be fine and breast cancer will disappear. Hooray!

Did I mention that the bill says that the primary duty of the commission is to “identify, recommend, and promote initiatives, partnerships, and research within the public and private sectors, basic and applied sciences, and epidemiology that can be turned into strategies to prevent breast cancer and breast cancer metastasis.” Notice the part where they, once again, left out people who already have mets? It’s one thing for a lobbying group to reject our please for help;  it’s another thing entirely to entrench that cruelty in federal law.

This is why I oppose the Accelerating the End of Breast Cancer Act. Because it’s stupid and pointless and will literally do nothing to save my life. I hope you’ll all write, email, tweet, and otherwise contact your legislators to ask them to oppose Senate bill 746.

Well, that was short-lived

Posted on by Beth Caldwell

My dance with NED is over already. Here’s what happened: I was on 4000 mg of Xeloda a day, and the side effects started to build up on me. My fatigue was bad, like, not getting out of bed most days. You can judge how bad my fatigue is by how messy the house is–The Hubs has his hands full working full time and keeping the kids alive, so cleaning is pretty low on the priority list these days–and let’s just say there were so many toys scattered around, there was nowhere to sit in our living room. In addition to the pretty extreme fatigue, I was starting to get neuropathy in my hands and feet, another known side effect of Xeloda. 

So, we reduced my dose to 3500 mg a day, and then 3000, with a one week break thrown in too. And then I felt much better. The neuropathy was gone, and I actually made dinner a couple of times. I picked up the living room, too, and helped The Hubs move furniture onto our new deck. It was indeed a golden age. 

Except, then I had my regularly scheduled PET last Monday. I got the results Friday, and one of the spots in my liver and the spot on my humerus lit up a little bit. Let me explain a bit about PET scans: they give you this radioactive stuff, and they look at your body in general and see how much it lights up on the scan, and then cancerous spots light up brighter, and they measuring the difference. My two spots aren’t THAT much brighter, but enough to say they’re growing.

So, #bestdocever (who you can now follow on Twitter at @drmarzbani!) gave me some options. Option 1: keep on with the lower dose I’m on and see how it goes. Neither of us thought that was a good idea–we both would expect more progression with that plan. Option 2: increase my Xeloda dose back to 4000 mg a day and live with the side effects, and scan again in 2 months instead of 3, to see how it’s working. Option 3: switch to Affinitor and keep Xeloda in our back pocket for later. I asked #bestdocever what he thought was the best plan, and he said Option 2 or 3, but he couldn’t really say which was better. He did promise that if the fatigue got bad, he’d give me a transfusion as soon as I felt crappy, and he’d definitely transfuse me before the ASCO conference the first weekend of June. (He also agreed to come to the conference, HOORAY! So, those of you stalking us will be able to find us in the sea of people at ASCO!)

I went with Option 2, because I feel like this: I want to stick with each drug as long as possible. I had such an amazing reaction to the high dose of Xeloda that I feel like it’s the right thing to do to go back on the high dose and see what happens. So far, the extreme fatigue hasn’t returned and neither has the neuropathy, but I’m only a couple of days into the higher dose, so we’ll see how it goes. I was very tempted by Affinitor because its side effect profile doesn’t include the level of fatigue that comes with Xeloda, which is, after all, chemotherapy. But if the high dose of Xeloda works to beat back those two tumors, or at least keep them in check, then I’m going to ride that train until it crashes. And if not, then I’ll switch to Affinitor.

NED is indeed a fickle one. He passes in and out of our lives, and this is a reminder that NED is not someone you can count on. I was shocked when he walked into my life, but I’m not shocked that he’s gone again. I’m also not freaked out at the moment. I know there are a lot more treatments I can try–there’s still a lot more IV chemos for me, and hopefully some new immunotherapy drugs will come along too. I told my Facebook friends not to panic, and I want to say the same to all of you. Keep calm and Xeloda on!

Hey Allies: Time to Help!

Posted on by Beth Caldwell

A lot of times, people who want to be allies to to the metastatic community ask “How can I help?” Beyond listening and being emotionally supportive, I don’t always have a specific thing I can ask them to do–but today I do! And it’s suuuuuper easy to do. You can do it in your pajamas. You can do it at work. You can do it sitting on the toilet while scrolling on your smart phone. (Don’t lie, everyone does it. This is why they invented Clorox wipes.)

Here’s what you do: Go to this webpage. Put in your info in the right hand sidebar. Click “Sign Now.” Then share it with your friends and family and ask them to do the same.

What is this thing I’m having you sign? It’s a White House petition. It works a lot like a change.org petition, except, if you hit 100,000 signatures, the White House promises to respond, unlike a change.org petition, which nobody is obligated to do anything with, no matter how many signatures you get.

Why did I start this petition? Here’s the situation: you may have been reading about the Cancer Moonshot that the President announced in his State of the Union speech this year. It’s an exciting time in cancer research–we now have the tools available to really make significant progress in preventing cancer deaths, and the Moonshot can help make that happen faster. Saving 5 years in research time could mean saving 200,000 lives in the US just in breast cancer alone, let alone across all cancer types, let alone across the world. 

I’m a big supporter of the Moonshot. A lot of its goals are really important and have the potential to be game changers for cancer patients, including metastatic patients. But there’s one key piece that I think is missing: there’s no specific goal on understanding metastasis. About 90% of all cancer deaths, across organs of origin, are caused by metastatic disease, and in breast cancer, that figure is almost 100%. Understanding the metastatic process–how cancer spreads, and how to stop it–is vital in ending cancer deaths. 

But currently, very little research money is being spent on understanding metastasis. In breast cancer, it’s only 7% of research dollars. This kind of underfunded research area, one key to preventing cancer deaths, is just the sort of thing the Moonshot should be working on. It should be bringing focus to areas that desperately need better research–and it’s doing that for childhood cancer, for epidemiology, and other important topics. I just firmly believe that metastasis research should be one of those topics.

So, my petition asks that metastasis research be added as a specific goal of the Moonshot. I’m not asking for money (although shifting funds from early stage cancers to those that cause most cancer deaths would also be delightful!), and I’m not asking to remove any of the other important goals the Moonshot has identified. I’m just asking for metastasis research to be added, because I believe adding it will save lives. 

If you tend to agree with me, please sign the petition, and share it as widely as possible and ask your family and friends to sign it too. Everyone has been touched by cancer in some way, and many of us have had family or friends pass away from a metastatic cancer–my grandmother died of metastatic melanoma–and so I hope we can all come together around the issue of metastasis research, so that less of us have to lose a loved one to cancer.

An Anniversary

Posted on by Beth Caldwell

I’m flying home from the Living Beyond Breast Cancer Thriving Together Conference as I write this, and I’m terrified to check in on social media. This time last year, I was crying because a truly beautiful person with metastatic breast cancer, Seporah Raizer, had just died of our disease, and I realized that she was one of the 113 Americans we had been honoring with our very first die-in. I certainly wasn’t the only one who sat in an airport bar that day crying my eyes out that such an incredible voice had been silenced forever, that someone who should have had so much life to live, had no more life in her body. 
It was hard enough leaving Philly and the new friends I had made that weekend–friends doesn’t feel like an adequate word to describe the relationships we’d developed, but I haven’t found the right word to express that feeling–and I sat in an airport bathroom and bawled my eyes out because I was terrified I might never see some of them again, that they might not live long enough to be with us in Philly the next year. We had all hugged each other tightly and said “I’ll see you next year” but it didn’t take away my terror wondering who would be gone when the following spring came.

Now, a year later, we know who we have lost. Maria, who I can’t think about without my heart breaking all over again. Ishuan, whose beautiful children will have to live without their mother. Holley, who inspired us to share our truth about our disease and gave us a voice.

We honored them this year, and the more than 40,000 other Americans, and the 522,000 people worldwide, who lives were stolen by this awful disease. We walked in a candlelight procession through the streets of Philadelphia to Independence Hall, and we stood near the Liberty Bell in the cold damp air, and rang our own chimes 113 times. It felt like an eternity, and with each peal, I wished that they would stop–that somehow that number would be smaller. Just one less ring, I thought. Imagine what that would mean to a family grieving the loss of that loved one. Just one less ring.

We spoke our truth, and raised our candles, and we held each other close, knowing exactly how we all felt at that moment. The profoundness of our loss, and the fear in these people we have grown to love so deeply, was written in tears on our faces and echoed in our voices.

And then, we packed our things and in ones and twos and small groups, we hugged again and again so tightly, just as we did last year, saying “I’ll see you next year” and hoped that we meant it. And we boarded our planes and climbed in our cars and cried, in grief and in fear, and tried to allow hope to keep us going, as we drifted away from the city of brotherly love.