URGENT ALL CAPS ACTION ALERT

You guys, we have work to do, TODAY. I need you all to call your Congressional Representative’s office, and tell the person who answers the phone this:

“I am calling to ask the Representative to sign onto the bipartisan Dear Colleague Letter to the National Cancer Institute regarding metastatic cancer research, sponsored by Rep. Peter King and Rep. Chris Van Hollen. It is imperative that we get more Congressional representatives to sign this letter immediately in order to save the lives of the 540,000 Americans who die each year of metastatic cancers.”

Don’t know who your representative is? No problem. Just call 202-224-3121 and they’ll put you through to the right office.

We need to get as many signatures as possible on that letter to ensure the letter has the maximum impact, and we need them in the next 36 hours. Don’t wait–CALL TODAY. 

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!

DONATE HERE!!!

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.

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.

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. 

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!

Bad Dreams

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.

Sometimes there aren’t enough rocks

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.