I’m Old

It’s official, you guys: I’m old. Not because I’m 40–that’s solidly middle-aged, in my opinion. No, I’m old because I live like an old person. No, seriously, I do. Let’s go through the good and the bad of being old, shall we?

GOOD: All my life I’ve watched commercials for adjustable beds and thought “Damn, that looks amazeballs, I want one of those.” So last year we bought one, because I spend a TON of time in bed because of treatment-related fatigue. And guess what? IT IS SO MUCH MORE AWESOME THAN I EVEN DREAMED IT WOULD BE. Want to watch TV in bed with the kids? Adjust to Zero G. Want to eat lunch in bed? Adjust the head higher. Want to go to sleep? Adjust to flat. Husband snoring? Adjust to Partner Snore setting. Me snoring? He adjusts to Partner Snore setting. Why on earth didn’t I get one of these things sooner? Worth every penny, my friends.

BAD: Since I’m still on cisplatin/etoposide (we’re still waiting for approval–or not–of combination therapy), I’m spending about a week of every 3 weeks too tired to do much of anything but laying in bed. Like, we’re talking so tired that the Hubs has to run me a bath because a shower isn’t feasible and that’s after several days without bathing at all and I smell HORRIBLE. It sucks being reliant on other people to do things I used to do for myself.

GOOD: I’m retired. I’M RETIRED YOU GUYS. Y’all still going to work? Hahahahaha suckers! Best perk of my terminal cancer by far. I missed being a practicing lawyer at first, but now? So happy I decided to take that disability retirement. So grateful it was a possibility for me, too. I figure that working for the feds instead of at a private firm, I made about half what I would have, but now I’ve got a fatty life insurance policy, a fatty health insurance policy, and a livable disability retirement package, and I probably would have had none of that working at a law firm. 

BAD: No longer having much in common with my peers. Y’all bitching about your husbands not pulling their weight? It’s the opposite in our house–I’m the one not pulling my weight. Worried about your bodies not looking so hot anymore as you age? Yeah, I have no breast. Bags under my eyes are the least of my woes. Feeling nostalgic about your kids growing up too fast? I’d give anything for my kids to grow at twice their current rate, so I can be here for more milestones. This is why I avoid kid birthday parties, I just can’t do small talk anymore.

GOOD: I give no fucks. Old people? We give no fucks, man. We gave away all our fucks a looooooong time ago. We’re out of fucks. The fucks are all gone. There are no more fucks to spend. So when some jerk tries to tell me I’m pushing too hard for cancer research or I shouldn’t swear so much or whatever else, I don’t give a fuck. It’s very liberating to give no fucks. It reduces my stress level immensely.

BAD: I spend a lot of time thinking about death. When you’re old, and your friends are old, you have to watch a lot of them die. Which is made all the more traumatic knowing that I’m going to die the same way. I guess I lied, I do have a fuck to give about that. That’s my only fuck left, though.

GOOD: Let’s end on a good one. Being in a city, I am living in a golden age of delivery services. Too fatigued to go to Costco? No problem, there’s an app for that. Need lunch and you’re too tired to stand up long enough to make something? There’s an app for that. Did you run out of scotch? THERE IS AN APP FOR THAT. Just today I had an amazing bagel breakfast sandwich and a fresh orange juice delivered to my house from a local deli. I didn’t even have to get out of my pajamas for it.

You guys, I’m old now, so I’m going to give some advice because that’s what old people do. Old will come for almost all of you, even if it comes earlier than you thought it would. Be prepared for the bad that comes with it, but embrace the good too. And live as well as you can, no matter how old you are.

I’m 40! It’s Fabulous!

You guys, it’s my birthday! I MADE TO 40!!! I was hoping to have a big blow-out birthday like I did for 30 (rounded up my girlfriends and went to Mexico on a cruise–man, dual income no kids was a good time, amiright?) but of course I’m back in chemo world again, so that’s not possible. But I thought of something better anyway, because back in 2006 I didn’t have a blog, and I hadn’t founded a grassroots organization committed to changing the landscape of metastatic cancer through direct action. 

So here’s my big birthday wish, and I need all of your help to make it come true. I want you to go to metup.org, and click on the donate button. It’ll take you to a donation page for METUP’s fiscal sponsor, Social and Environmental Entrepreneurs. (We’re proud to be a project of SEE and very glad they’ll be filing all the tax paperwork for us next year instead of us having to file it!) And then I want you to donate, but not just any donation amount because it’s my 40th birthday. 

So, donate $4. Your latte costs more than that.

Or $40. That’s like 4 bottles of wine. I know it’s a sacrifice but I also know how much wine you drink.

Or $400, #bestdocever who just got back from a vacation to JAPAN.

Or $4000. Yeah I see you tech worker high roller driving a Tesla to work in my husband’s office. Don’t pretend like you don’t have the cash

Or $40,000. Hi Joan Lunden’s staffer who is so nice when we DM on Twitter! OK, at least retweet this one, will you? 

Or $400,000. Shut up, it could happen. No YOU’RE being delusional.

You get the idea. 4’s. Because 40 is FABULOUS. Or it will be, if you make my birthday wish come true!


The Dakotans

I went to Sioux Falls, South Dakota to meet with Dr. Brian Leyland-Jones of Avera Cancer Institute, who is a guru of combination therapy for cancer. The idea behind combination therapy, which is outlined in Dr. Vince DeVita’s outstanding book “The Death of Cancer” (people with cancer: READ THIS BOOK), is that cancer doesn’t just grow one way–it has LOTS of pathways it can take to grow, because cancer is smart as fuck. So if you block one pathway, it’s just going to use another pathway to grow. So, the idea behind combination therapy is to block multiple pathways, so the cancer can’t just get around the one drug you give it. Think of it as like you’ve got a serious bacterial infection and they give you a combination of antibiotics, like Augmentin, to make sure you really kill the bacteria and it’s not resistant to the one antibiotic you give it. Right now, the standard of care in metastatic cancer is to give one drug, then another, then another, then another, and eventually you run out of drugs and you die. This is why median survival is 33 months for metastatic breast cancer. Dr. Leyland-Jones and Dr. DeVita believe we can do better, and in fact, Dr. DeVita developed a protocol involving 4 different chemos all given at once to Hodkins patients. And guess what? Hodgkins went from a a death sentence to being frequently curable. Other doctors would say “Do your patients still speak to you after the hell you put them through?” And he says, “Yes, they send me pictures of their grandchildren 30 years later.”

So. I went to Sioux Falls for a consult, with the full blessing of #bestdocever to talk to Dr. Leyland-Jones about what combination therapy he’d recommend for me. As many of you know, I have a rare type of cancer: neuroendocrine breast cancer. Neuroendocrine tumors usually grow in the gut or the lungs–there’s only about 20 US cases of neuroendocrine breast cancer reported per year. The fascinating thing is, my cancer acts like neither a breast cancer nor a neuroendocrine cancer nor a neuroendocrine breast cancer. In fact, Dr. Leyland-Jones says my cancer is the most bizarre one he’s ever seen–there is literally no neuroendocrine breast cancer anywhere in the literature like mine. If you doubted that I’m a special snowflake, now there is scientific evidence that you’re wrong.

Before I went, I had both Foundation One and Guardant 360 testing. Foundation One tests a biopsy of an existing tumor (in my case, my liver) and Guardant tests your blood. Both of them showed that my cancer is heavily driven by a TP53 mutation–in fact, Dr. Leyland-Jones said he’d never seen such a high TP53 score before. (I am not just an oversharer, I’m an overachiever.) Currently there are drugs in trials for TP53, but nothing approved for any cancer type. In addition, I have a MEK amplification and an NF1 mutation.

The good news is, there are drugs for both MEK and for NF1. Those drugs are Cabozantinib and Trametinib. Cabo is approved for renal cell and medullary thyroid cancers. Tram is approved for melanoma. Neither is approved for breast or neuroendocrine cancers. They also recommended we pair those two drugs with Doxil (which is approved for breast cancer, it’s a chemo drug) and they think I will have good success on this cocktail.

Now here’s the problem. Since Cabo and Tram are not approved for my organ of origin, we’re going to have a hard time getting them approved by my insurance. We expect an initial denial and an appeal will have to happen. I have very good insurance but this is waaaaaaay outside the box so it’s entirely possible I won’t get approved for it. The next step after that would be to ask for the drug companies to offer it through their patient assistance programs. Those tend to have an income cap around $100,000, which means to qualify I’d likely have to legally divorce The Hubs, which comes with other consequences financially for us, not to mention WTF I love my husband and he loves me and we don’t want to get divorced WTF.

If we can’t get the drugs covered, the cost per month would be around $12,000. No I’m not making that up. In my 401K I have about $100,000, so that’d cover less than a year of treatment.

So. Now we start the process of trying to get access to the drugs. The patient advocate at Avera is a badass and when I told her I’m happy to do some social media shaming of whoever won’t pay for the drugs she said “I knew I was going to like you.” I’ll also be leveraging contacts at Novartis and anywhere else I have contacts. (Know anyone at Regence Blue Cross/Blue Shield here in WA? Because they’re the plan administrator for my insurance.) This will take several weeks at best. In the meantime, I’m staying on Cisplatin and Etoposide, the chemo cocktail that’s been fairly successful for me in the past and that I hope is doing some good work kicking butt for me right now.

I can’t say enough good things about the team at Avera. If you have MBC, GO SEE THEM. They have been running a trial for 2 1/2 years now in which they give as many patients as possible the full cocktail that their genomic testing suggests, and following patients who for whatever reason (health status, insurance fuckers) couldn’t get the full cocktail. These were heavily pretreated patients, on their 4th or 5th line of therapy. Of the patients that got the full cocktail, 2 1/2 years out, they’ve had a a 93% response rate (only 7% of patients progressed) and 30% are NED. Of the patients who didn’t get the full cocktail, all of them are dead. ALL OF THEM ARE DEAD. The other beauty of their approach is, you go see them for a consult, then your doc prescribes the cocktail, so you don’t have to go to Sioux Falls for treatment. You just need a doctor willing to think outside the box and prescribe something that isn’t remotely standard of care yet–knowing that, standard of care leads to 33 months median survival for us people with MBC.

Feel free to ask questions, I’m happy to answer them. And if you’d like me to hook you up with the Avera team, drop me a DM on Twitter and I’ll connect you.

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. 

Nurse Logs

There’s a trail at the Girl Scout camp where I went as a kid and worked as a counselor in college called the Roslyn Bay Trail, and it’s where I first learned about how a forest renews itself when trees die. What happens is, when a tree falls down, the nutrients in it feed new plants–first small plants like mosses, then bigger plants like ferns, and eventually new trees grow out of the remains of the tree that fell. We call these downed trees nurse logs, because they nurture new life even through their death.

Trees have been a metaphor for my experience with metastatic cancer almost from the beginning. The trees down here at the base of this cliff are the people I’ve met in the world of cancer–my metastatic sisters and brothers. I did a video for Living Beyond Breast Cancer during their 2015 mets conference, the one where I met Jennie Grimes and we held the first die-in, and in it I talked about how the women in the video with me are the lovely trees in this horrible swamp of disease we live in. And whenever the four of us would message each other or post on each others’ Facebook timelines, we’d use the tree and heart emojis, to send tree love to each other.

One of those four trees is gone now, our beautiful Adrian, and now only three of us are left. She’s not the only tree I’ve lost recently–of that original Hear My Voice training program in 2015, 6 of us have died, and another is in hospice. And it’s killing me. It’s slowly killing my spirit just as surely as cancer is slowly killing my body. When Jennie enters hospice, when Jennie dies, I don’t know how I’ll keep going on. And I know she feels the same way about me.

The only thing that brings me any sense of meaning to me these days is to think of these fallen trees as nurse logs. Their memories, their lives, their children, their passions, their faces, their senses of humor, their wisdom, their spirits, their beautiful beautiful beautiful spirits are nurturing us, feeding us, giving us strength to go on, to demand change, to bring research to our friends, to fight against death death death so much death. Their falling leaves a hole in the forest canopy, but their souls are bringing new life to our movement and nutrients to keep us growing. 

And someday this forest will cover the world.

New York New York, A Hell of a Town

One of my favorite Simpsons episodes is when the family goes to New York City because Barney has gotten drunk, stolen Homer’s car, and left it at the base of the Twin Towers. In order to retrieve the car, Homer has to wait by the car for a police officer to come by, which only happens once a day. Of course Homer drinks too much crab juice with his kavkalash and has to pee, and misses the police officer, sending him into an insane rage. Meanwhile, the rest of the family has a magical time in the city, but Homer drags them away, car destroyed from his decision to remove the boot on its tire by using a jackhammer. As they drive out of town, the kids ask if they can come back to New York sometime, and Homer, his face pelted with garbage because the windshield is gone, mutters “We’ll see, kids.” 

I was really worried that The Hubs would feel that way about New York City, because that’s how I felt about it the first times I visited in the pre-9/11 era. I just felt completely overwhelmed, like I was becoming more and more neurotic the longer I was there. But my last trip to New York, in January 2015, was completely magical and I realized that New York is actually pretty fantastic. And luckily, everyone in the family felt the same. Some highlights of our stay:

1. Our hotel, the Refinery NYC. Our room was enormous by New York City hotel standards, and it had an amazing rooftop bar with a view of the Empire State Building. The service was outstanding, from the front desk staff to the bellmen to the concierge who recommended her favorite bagel shop and arranged us a limo to take us to the pier in Red Hook.

2. Front row tickets to Wicked. The show was incredible, of course, and so was seeing it from the front row, where The Kids could peek into the orchestra pit and really see the expressions on the faces of the actors. Also, I had no idea that the dad from Girls was playing the Wizard, so that was a nice surprise. My favorite part of the experience was watching the kids watch the show, especially The Girl, who was completely enchanted the entire time. I was worried that she and The Boy would have trouble sitting through the whole show, but I mean, it’s such a great show, it wasn’t a problem at all. I think that’s a memory that will stay with them forever.

3. The Boy running a 5K across the Brooklyn Bridge with my college BFF. Poor kid was exhausted after, especially because it was so hot, but I’m very proud of him, and I think he’s proud of himself too. 

4. We bought The Girl her first American Girl doll from the store by Rockafeller Center. HOLY HELL THAT PLACE IS NUTS. The Girl chose the MaryEllen doll, and then we got her and the doll matching outfits, because of course we did. Dear Grandparents, Aunts, Uncles, and anyone else: American Girl crap is what she wants for her birthday and Christmas this year.

5. Eating in Little Italy. My mom’s stepdad was Italian and I like to joke that he was in the mafia, since he was a casino doctor in Reno in the 1950’s and how many Italian casino doctors were there in Reno and the 1950’s who weren’t at least connected? So, I have an obsessive love of Italian food, and it was really amazing to be in a place where immigrants like his parents came to start a new life in the new world.

6. The Statue of Liberty. No, we didn’t go all the way to the top, because dude, who the hell wants to walk up all that way, and also all the tickets for the crown were sold out. But we did have pedestal tickets, and that was pretty cool. Pro tip: be sure to put on sunscreen, because now I have a really funky tan from the shirt I was wearing. Speaking of imagining immigrants coming to the new world, wow, imagine seeing Lady Liberty as you fled from poverty, persecution, pogroms…a truly amazing experience.

7. Taking The Kids for their first subway rides. I am a firm believer in teaching kids how to use public transit. Partly this is because I don’t drive, and partly it’s because I remember being a teen and having so much more freedom because I was able to get around my city on public transit. It’s just a skill set that I think everyone should have, and it was fun teaching the kids to swipe their fare card and find the right platform for the right train. And also teaching them not to touch anything because eeeeeew germs.

8. Sailing out of New York harbor. WOW. I mean, WOW. I got all verklempt as we watched the city getting farther and farther away, wondering if I’ll ever get to see it again. And then sailing under the Verrazano bridge, juuuuuuuust barely making it without hitting the bridge deck–everyone up on deck cheered. 

But the rest of that story will have to wait for the next installment of this travelogue, because now it’s time for afternoon trivia in the Golden Lion Pub onboard the Queen Mary 2. 

Lulu and Jill

A break from #EpicCaldwellVacay for a moment (which HAS been epic so far, more on that later) to remind ourselves that cancer never takes a vacation. 

While in New York, I learned that my dear friend from Twitter, @LuluChange, had died from metastatic breast cancer. I first met Lulu on Twitter, but we also met in person twice: once at the Living Beyond Breast Cancer conference in April 2015, and once in Seattle in summer 2015. There are a lot of tough broads in the world of MBC, but Lulu was one of the toughest, maybe because she was so determined not to let cancer define her life. She was a professor at a college in Colorado, and she taught right up through spring semester this year because her career was important to her, as were her adult children. When I think of Lulu, I’ll always remember her as deeply committed to changing the world of MBC, and refusing to let people paint a rosy picture of breast cancer. Twitter seems an emptier world without her.

And just today, I learned that my dear friend Jill Cohen, a fellow Hear My Voice graduate and Seattleite, has entered hospice. Jill’s blog, Dancing with Cancer, was the first blog I found when I was diagnosed with MBC, and it gave me so much hope. She lived with MBC for 14 years–in fact, last summer she threw a bat mitzvah for her mets, because come on, that’s funny–and she had the most amazing attitude about her disease. She told me that not long after she was diagnosed, she had a dream that there was a party at her house and the guests were being too loud and keeping her awake. So she told them they could stay, but only if they’d keep it down. And that’s how she viewed her cancer: it could stay, but only if it kept quiet. Unfortunately, her cancer isn’t quiet anymore, so it looks like the party that has been Jill’s life is coming to an end. I’m going to miss her at our local support group meetings, and I’ll always remember her and her husband sitting on our deck enjoying some Seattle sunshine during our last visit together.

All the rest of you metsters: please, no more bad news while I’m away. Just hang on a couple more weeks, OK? And know that I wish I could hug all of you as our community suffers these loses. 

#EpicCaldwellVacay is finally here!!!

YOU GUYS! For a very long time, we’ve been planning a seriously epic vacation, and it’s FINALLY HERE!!! I’m writing this from 35,000 feet over somewhere in the Midwest, on my way to New York with The Hubs and The Kids. We’ll be spending a couple days in NYC, then boarding Cunard Line’s Queen Mary 2 to sail to England. We’re blowing a chunk of my 401K (because I’m technically retired now, so I might as well spend it, amiright? And if I end up being some miracle breakthrough of cancer science, well, I guess I’ll go back to work!) and sailing in a Queens Grill Suite. This comes with butler service. BUTLER SERVICE!!! Our butler will arrange cocktail parties for us, unpack for us, shine our shoes, serve us dinner course by course in our suite…basically, make sure we have everything we could possibly need.

The suite is called a Queen’s Grill Suite because this is a British ship, so we upper crusters don’t dine with the lesser people. No, we have our own special dining room, called the Queen’s Grill. (There is also a Princess Grill, for the not quite as fancy suites, but if you’re gonna blow part of your 401K, I mean, you might as well do it all the way.) We also have our own bar just for suite passengers, so we don’t have to drink with the hoi poloi. In addition, the suite itself has a bar, because of course it does.

The kids are looking forward to going swimming, seeing a show in the ship’s planetarium, and spending time at the kids’ club, which is staffed by child care workers who have been certified by the British government. I’m looking forward to going swimming, drinking Scotch, and dancing in the ballroom in my brand new gown on formal nights. The Hubs is looking forward to drinking Long Island Iced Teas and sleeping.

Our ship will land in Southampton on August 16, and then we’ll be taking a quick tour of Stonehenge before heading to London. Our former nanny, who’s just finished her master’s degree, asked if she could come with us (she’s paying her own way, you guys!!! Seriously, best nanny ever) and we were like “OMG SERIOUSLY YES!!!” So she’ll be meeting us at the ship in Southampton. We’ll spend a couple days in London, then take the Caledonian Sleeper to Inverness. We’ll be staying near Loch Ness for a few days, then our nanny heads home and we head to Oban for a few days (we’re staying near the whiskey distillery, because of course we are) and then finish our trip in Edinburgh, where their big festivals will be happening. And then we fly home.

I know y’all are like “OMG how can I follow along with this epic trip?” I’m glad you asked! I’ll be tweeting as much as possible, using the hashtag #EpicCaldwellVacay, and those tweets will also feed to my blog’s Facebook page. Expect lots of pictures of castles and whiskey, but I’ll also share any epic meltdowns, mine or The Kids’, because I’m keeping it real, y’all.  As time and Internet access allows, I’ll also blog about it.

YOU GUYS I AM SO STOKED!!! Oh it’s on. It’s on like Donkey Kong. #EpicCaldwellVacay has begun!

I will burn this village down to save it

Remember the movie Primary Colors? I’m sure a lot of folks have been thinking about it this election season, since it was based on Bill Clinton’s 1992 campaign–but don’t worry, this isn’t a political post. I’m thinking of the scene where Kathy Bates’ character tells the candidate and his wife that if they try to expose their opponent’s dirty secrets, she’ll expose theirs. And then she says, “Yes–I will burn this village down to save it.” Because that’s what I’m about to do to my cancer.

My latest brain MRI results are finally in, and I’m up to 7 teensy brain mets, from the 2 on the last scan. They’re still super tiny so #bestdocever is cool with us going on the vacation we’ve been planning forever, and rescanning when I get back. In other exciting news, my PET last week also showed progression–liver tumor growing, iliac tumor lighting up again, arm tumor lighting up brighter, and a lymph gland that briefly caused a scare that it might be a pulmonary embolism but thank goodness it’s just more cancer. 

So, goodbye Afinitor/Exemestane, and thank you for the giant mouth sores, the mood swings from hell, and the 5 lbs I gained in 7 weeks. At least you didn’t make my toenails fall off and give me extreme fatigue? Now it’s time to get serious. I’m going nuclear on this cancer shit. 

The plan is to biopsy a tumor, send it off for both genomic and proteomic testing, and then we go on our 3-week vacation, while taking something to tide me over until I get back (#bestdocever is still figuring out which drug that’ll be, but he promised it’ll be a gentle one so I can enjoy the vacation). Then I go see some doctors in Sioux Falls and they tell me what kind of craaaaaaazy ass combination therapy to take. They like to combine 3-4 different kinds of drugs, like a CDK 4/6 inhibitor and an immunotherapy drug and an mTOR inhibitor and chemo, like, all at once. The idea is that you have to target multiple pathways all at once, because if you just target one, it uses other pathways to just go right on growing. But if you target different pathways all at once, the cancer can’t figure out how to keep growing and it dies. This is how Hodgkins went from death sentence to usually cured–combination therapy, motherfuckers!

Then I fly home, and #bestdocever gives me the drugs and I feel like crap for several months, in the hopes that I’m one of the 93% of heavily-pretreated MBC patients who respond to this crazy badass insanity combination therapy in their ongoing study. Yes you read that right, only 7% of patients, all of whom were heavily pretreated, progressed while on the full combination therapy. Because I’m done with going from drug to drug to drug watching each one fail me in a matter of weeks or months. That leads to a 33 month median survival, which is some straight up bullshit. The standard of care isn’t working, so it’s time to abandon it and try something else.

I’m expecting this to be a pretty toxic regimen. The patients in those initial Hodgkins trials got horribly sick on the VAMP protocol. People asked Vince DeVita if his patients even spoke to him after he put them through that. But you know what he says now? “Yes, they do–and they send me pictures of their grandchildren.”

Oh yes, I will burn this village down to save it.

We’re Different

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!