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!

An Open Letter to Vice President Biden

Dear Mr. Vice President,

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

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

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

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

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

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

I look forward to your reply.


Beth Caldwell

Co-Founder, MET UP

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.

Hate and Death

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

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

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

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

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

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

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

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.