Tree Love

You may have seen me post on Twitter or Facebook with some emojis like this, and wondered “Um, what’s that about?” 

🌲❤️🌳❤️🌴❤️

Good question! So, I sometimes talk about getting diagnosed with metastatic cancer as being like falling off a cliff and landing in a new land, and you lay there in pain for a bit, and then you get up and look around and say, as Wesley did in the fire swamp in The Princess Bride, “I mean I wouldn’t want to build a summer home here, but the trees are actually quite lovely.” And my metastatic friends? You’re the trees. You’re lovely, and you make being in this awful place bearable. 

And so, I send you tree love with my dorky tree emojis, because I am so grateful for all of you. I wish that none of you had to live at the base of this cliff with me, but since we have to be here, I’m glad we can be each other’s lovely trees, and make this place a little more beautiful.

Blocking and Unblocking the Sun

Since being diagnosed with terminal cancer, I have had one goal: to live long enough to see The Girl start kindergarten. She was 2 and a half when I got diagnosed back in March of 2014, and starting kindergarten in 2017 would fall past median survival for me. Thinking about her having to start school without her mother brought me to my knees every time I thought about it. It’s the thing that would bring me to tears, that would break my heart–it was my biggest fear, by far.

Today, The Girl went to her first day of our district’s Kindergarten Jumpstart. It’s a week-long program for kids entering kindergarten, a couple of weeks before the official start of school, where the kids get to meet the kindergarten teachers and some of the other school staff, and learn the layout of the building, and meet the other kids, and just start to get a sense of what elementary school is all about. No, today isn’t the official first day of kindergarten for The Girl, but it’s close enough.

And I’m here. I’m alive. My recent MRI testing showed no signs of leptomeningeal mets. I’m still dying slowly, but I’m no longer staring hospice in the face, and The Girl has started kindergarten. This is the day I have dreamed of for three and a half years, and it’s here. It’s here.

How did the first day of kindergarten go, you ask? Perfectly normally. The Girl was excited and nervous at the same time, and was scared when it was time for Mom and Dad and The Boy to say goodbye at drop-off, but she powered through with the promise of ice cream after school was done. I’m guessing millions of other families had a really similar first day of kindergarten experience today. Being normal when your life is anything BUT normal is pretty amazing.

I like to think of myself as a pretty good writer, but I have absolutely no idea how to describe this feeling. I mean, none. Maybe because it’s not just one feeling–it seems to be a collection of relief and pure joy and PTSD and reliving all the awfulness of the last 3 years and pride in my big little girl and holy hell, just everything, all at once. It seems fitting that today would be a day of a solar eclipse, a time where the sky makes us stop and take in the amazing wonders of our world, to experience darkness and lightness at the same time.
#BestDocEver says I need a new goal, and he’s right. I don’t know for sure what it’ll be–I would love to be the mom of a teenager, which is almost 3 years away. I’m not sure my heart can take 3 more years of the kind of hope and terror I’ve been living with…but I’m not sure I can muster the strength it takes to keep living the metastatic life without that combination of hope and terror. The time I spent believing that I had lepto mets and only had a few months to live, I lost all will to do anything. I didn’t even care about advocacy work. The depression of that hopelessness was pretty intense, and obviously wasn’t good for me. So, maybe looking towards parenting a teen isn’t a bad goal?

Progression

It’s been a hell of a few weeks here in cancer land. A hell of a few weeks. 

As you may remember, I had gamma knife to my brain metastases back in May, and I also had radiation to a spot in my lung and a bone met in my shoulder. Then I went on Keytruda and Yervoy, a pair of immunotherapy drugs, in hopes that they’d shrink my cancer. I did two cycles of the immunotherapy drugs, and then some not awesome shit happened.

I’ve been having a lot of coughing fits, despite the radiation we did to my lung to try to shrink the tumor there. Sometimes I cough so hard, I throw up. One night at bedtime, I had a particularly bad coughing fit, threw up, and then came back to bed to lay down. The next thing I remember, I was in an ambulance. Apparently, I had a pretty major seizure that went on for about 5 minutes. My husband was there for the whole thing and made sure I was OK, called 911, and had someone come over to watch the kids so he could come with me to the hospital.

I spent the next couple of nights in the hospital, and had some testing done. I had a brain MRI, and it showed what may be leptomeningeal metastasis. Lepto mets are in the fluid around the brain, and the prognosis for them is not good–we’re talking a couple of months. Two dear friends of mine died of lepto mets last spring. Standard treatment for lepto mets is to put in an ommaya, which is basically a port into your head so that chemo can be put directly into the cerebrospinal fluid to try to kill any cancer cells in there. And, wholebrain radiation is also often part of lepto treatment. These tend to buy a bit of time, but not much, and come with impacts to quality of life, including fatigue, nausea, cognitive impairments…so, yeah, treatment for lepto isn’t awesome.

I have no interest in an ommaya. If I only have a few months to live, I don’t want to spend them hooked up to IV chemo that makes me feel like shit. So, I had a talk with #bestdocever, and we talked about me probably entering hospice. There were lots of tears. On the way home, I told The Hubs that I want to take the kids to Disneyworld, and we started making plans.

The next day, I was laying in bed watching the news and I had the most intense deja vu of my life. It was as though I’d heard every word the people on TV were saying. I called for The Hubs and tried to explain what was going on, but wasn’t able to speak clearly. And then, the next thing I remember is being wheeled out of the ambulance at the hospital. Apparently I had another long seizure, this time about 4 minutes. I spent another night in the hospital and had a spinal tap to test my CNS fluid for lepto mets. I also had fluid drained from around my lung to help with the cough. 

Then there’s the part where things start to get weird: the spinal tap came back negative for lepto mets. Negative. Whut? I’m not within months of dying? WTF? We’re having a second lab take a look at it, but it’s possible that the seizures aren’t being caused by lepto mets, and are just from a regular brain met bleeding. I’m going to have a spinal MRI to look at the spinal fluid and see what we see, but if the second lab comes back with no lepto mets, and the spinal MRI doesn’t show any signs of lepto mets, then holy hell, I’m not going to do hospice after all. I’m going to do treatment.

What we’d be looking at is whole brain radiation, and xeloda with temozolomide. I’m expecting pretty serious fatigue and some nausea, but also for treatment to buy me a lot more time than it would with lepto mets. Whole brain radiation may also come with cognitive decline, and that’s something I doubt I’d choose if I didn’t have two young children who desperately need more time with their mother. 

The other thing that’s going on lately is bone met pain. I’ve got a bone met in my sacrum and one in my left hip, and they hurt. A lot. I wake up every morning in pain, and it takes time for my pain meds to kick in so I can be functional at all. The pain meds make me a bit loopy too, which isn’t awesome. I’m also on cough medicine to help keep me from having such horrible coughing fits, in case that’s contributing to the seizures. And, I’m also on anti-seizure medicine, and hoping that’ll keep me from having any more seizures.

As you can imagine, going from “you have only a brief time to live and you’re entering hospice” to “you’re going to have a bunch of treatment that will come with lots of side effects but buy you a decent amount of time” has been quite the mind fuck, not just for me but for everyone in my world. The Hubs is going from FMLA leave back to working full time, but also worrying about whether I’ll have a seizure while he’s at work. I’m giving up a lot of the advocacy work I had planned for the fall, including a trip to Lisbon for an advanced breast cancer conference. My time now is really going to have to be focused on the physical fight against my cancer, and making memories with the family. I’ll do advocacy work when I can, but it won’t be as much as I’d like to be doing. Cancer just isn’t going to let that happen.

And, it’s still entirely possible that there’s lepto mets going on in there, and the next round of testing will show that. If that’s the case, I’ll be back to thinking about hospice. Hopefully we’ll know more in a the next week or so.

Anyway, that’s what’s been going on in my fucked up world lately. I’ll do my best to keep you posted, but if you don’t hear from me as often as you’d like, I hope you’ll be patient. This is a really difficult time for me and my family, and I’m so grateful for all the love everyone has shown us over the last few weeks.

Immunotherapy!

Hi all! It’s been a bit since I last updated on my health, so I thought I’d share what’s going on. I’m currently sitting in a infusion chair at my oncologist’s office because today is my first day on my new treatment: Keytruda and Yervoy. If this post suddenly turns weird like I’ve lost neurological function, somebody buzz the nurse for me, will you?

As you may have seen on Twitter, I had gamma knife on my brain last month, because I’ve got a zillion tiny mets in there. OK, not a zillion, but like, 50? Now, most doctors would do whole brain radiation with that many brain mets, but I flat out refuse to do WBR unless it’s an absolute last resort. I don’t have any symptoms from my tiny mets, and WBR can cause cognitive issues. So fuck that, we’re saving that for when I really need it. Instead, we zapped 26 of those little fuckers in my brain, the ones that were growing and/or were likely to cause symptoms if they grew. It went fine, although now I have a couple bald spots from the mets that were close to the surface. Right now my hair is curly so it hides the bald spots.
Then I had 5 days of traditional radiation on my lung met (actually a cluster of lymph nodes in there rather than the lung tissue itself) that’s given me a chronic cough, as well as the met in my humerus. It’s at the very top of my humerus and it was causing a bunch of pain. 5 days was short enough that I didn’t have skin problems from the radiation, though fatigue has been a challenge. Then again, when isn’t fatigue a challenge for me?

And, now I start on Keytruda/Yervoy! Immunotherapy is supposed to work even better after you’ve had radiation, and Keytruda’s the drug that cleared Jimmy Carter’s brain mets, so I’m really hopeful it’ll work as well for me. Often immunotherapy drugs like Keytruda and Yervoy don’t work great on breast cancer because it tends to be less immunogenic. In fact, there was some pretty disappointing data out of ASCO this year on Keytruda in triple negative breast cancer. But we all know my cancer doesn’t work regular breast cancer, because it’s neuroendocrine breast cancer. And, cancers with big mutational burdens like mine tend to respond better to immunotherapy than those with low mutational burdens. I read a study recently about a woman with metastatic neuroendocrine ovarian cancer, and radiation plus Keytruda got her to NED in 4 months, and kept her NED even after she went off Keytruda due to side effects. I desperately want that to be me.

Getting the drugs was an administrative headache, of course. Since neither drug is approved for breast cancer, I had to go through the patient assistance process again. Merck’s process was super easy and fast and we had approval for Keytruda pretty quick. With Bristol Meyers Squibb, there were some paperwork headaches, plus a complication created by insurance. So, my insurance doesn’t require preauthorization for Yervoy, which means they’d pay for it–BUT. Because I’d be getting it off label, it’s entirely possible they’d come back later and try to get their money out of me. And I can think of a lot of things I’d rather spend $55,000 on than Yervoy. Like two years of my mortgage payments. But, the financial person at my oncologist’s office is tough and smart and she handled getting my insurance to realize they didn’t want to pay for off-label drugs, which got BMS to give me the drug for free.

So, that’s where I’m at. Everyone keep you fingers crossed that I’m one of the lucky ones who responds to immunotherapy. And, as always, I’m so grateful for all the support I get from all of you! Your words really mean a lot to me.

Murderers

Tomorrow Congress may vote on a change to our country’s health care system that will kill people with cancer. That’s not hyperbole, it’s the truth. The new healthcare bill is even worse than the one that’s being voted on tomorrow. It’ll allow our insurance companies to charge cancer patients like me hundreds of thousands of dollars more just to have health insurance. It’ll allow insurance companies to refuse to cover my son, who was born premature. The members of Congress who vote for this bill are aware of exactly what it will do. They know that if this bill passes, millions of Americans will die for lack of health care. 

In the law, a murderer is someone who knowingly, deliberately takes an action that takes someone’s life. Voting yes on this bill makes people murderers. They are attempting to kill me, to kill other people with cancer, to kill other people with disabilities, to kill other people with illnesses. Their motive is money–we cost too much to keep alive. We are not worth the money that insurance companies must spend on us. 

If your member of Congress is considering voting for this bill, I beg you to call them today and tell them what you think of it. Tell them they are murdering your friend Beth Caldwell with their vote and you will make them pay for that vote. Use your voices to rise up and destroy this bill that will slaughter millions of Americans. And if they won’t listen and they vote for it anyway, you must follow through on your promise and use your votes and your voices to ensure they lose their power. A murderer has no place running our government.

Click on this link for a list of key members of Congress you should be calling. Fill up their phone lines demanding that they refuse to vote for this murderous legislation, and reminding them that their constituents will not vote for a murder next year. Keep calling until you run out of breath in your body. My very life depends on it.

The One Not There Next Year, redux

For those who missed it, my last post was about how treatment would be keeping me from going to the Living Beyond Breast Cancer Thriving Together conference this year, and how we never know who will be too sick/too broke/too dead to attend next year’s conference, and how we’re scared it’ll be us. I wrote about how a friend of mine had cried at last year’s conference and said “I’m the one who won’t be here next year,” and how, in the end, it was me who wouldn’t be there, and her who would be–she had made plans to travel there with her mom as her caregiver.

The best laid plans.

That friend was Mandi Hudson, of Darn Good Lemonade, and she died this week. 

I don’t have words. I didn’t realize it was possible to feel this empty.

And ironically, my platelets were too low for chemo last week, so my schedule is bumped by a week, making LBBC weekend a real possibility for me instead of a pipe dream. So, I booked myself a ticket and a hotel room, both refundable in case my body refuses to cooperate, and I’m planning to be there. If there is anything Mandi has taught me over the years, it’s to not let this disease steal more from us than absolutely necessary–to figure out a way to do the things that are important to us, even if they seem difficult. And seeing my friends, some of whom I’ll never see in person again, is important to me.

Lately I’ve been listening to the Hamilton soundtrack nonstop (The Girl loves The Schuyler Sisters) and the song Wait For It keeps running through my head. “Death doesn’t discriminate between the sinners and the saints, it takes and it takes and it takes, and we keep living anyway, we rise and we fall and we break and we make our mistakes…and if there’s a reason I’m still alive when so many have died, I’m willing to wait for it. I’m willing to wait for it.”

I’m still waiting for it. But I’m writing like I’m running out of time.

If you’re anywhere near Philadelphia on April 29, even if you can’t come for the LBBC conference, please come meet up with me and METUP for the third annual Philly die-in. You can find event details here

The One Not There Next Year

The annual Living Beyond Breast Cancer Thriving Together Conference, for people with metastatic breast cancer, is happening next month. The 2015 conference is where I met so many of my favorite metsters, and where the very first MBC Die-In happened. I met even more of my favorite metsters at the 2016 conference last year. It’s a fantastic event, life-changing really, and I highly recommend it. If it’s at all feasible for you to go, don’t think, just go!

I really want to be there this year. I keep trying to come up with ways to make it happen given my health situation–The Hubs said he could maybe come along so I have someone to push the wheelchair and haul the luggage and take me back to the room when I’m too tired to participate anymore. But the further I get into chemo, the more I realize it’s probably not feasible for me to fly all the way across the country and expect to be able to do anything other than lay in bed for 3 days.

Yesterday I went to see The Girl’s first dance recital–she’s in a class for preschoolers called Creative Ballet, and the show was ADORABLE–and had to spend the rest of the day laying down. The other time I’ve gotten out of the house since chemo? Thursday I spoke at a press conference on Trump’s #deathbudget and how the cuts to NIH will literally kill me. Both outings required my wheelchair because I couldn’t have walked as far as I would have needed to in order to participate. After Thursday, I spent the next 48 hours entirely in bed other than to pee. Both outings were COMPLETELY WORTH IT. If we don’t keep advocating for us, we’ll all die. If I wasn’t at The Girl’s dance recital, knowing the next one isn’t until next year…well, I never would have forgiven myself.

I think sometimes people don’t realize just how physically limited I am right now. When I say I’m not capable of flying across the country, I’m not looking for suggestions for how I might be able to go–I’ve thought up every idea there is already, believe me. I actually mean I’m not physically able to make the trip. (Hey LBBC: I so so so wish the mets conference was more centrally located instead of in Philly. A 3 hour flight I might be able to do. And it’d cost less too!) LBBC’s conference is right up there with the dance recital and a press conference in terms of importance to me. If it were possible, I’d be there.

Every year, there’s someone who was at last year’s conference who’s not there the next year. There will be a lot of friends of mine who won’t be there this year because they’ve died. I cry whenever I think of any one of them–the thought of all of them not being there this year causes me physical pain. Every year I leave the conference, I go to the airport, sit in a bathroom stall, and bawl, wondering which one of my friends, old or new, will be the one who’s not there next year? Which one will I never see again, because they’re too sick to travel, or worse?

Last year at the conference, one of my friends had just gotten some news of progression, and she cried and said “I’m the one who’s not going to be here next year.” And I hugged her and told her that I will always love her, whether she’s here or not. Now it’s looking like she might be the one to be there this year, and I’ll be the one who isn’t. If I’m not there, which of my friends will I never get to see again? Which will never get to see me again?

Worst Wife Ever Moment: March Madness

Hello, my name is Beth, and I’m a college basketball addict. I get a little twitchy when the season is over as I go through withdrawal. And when the season starts back up again, I’m giddy, but not even remotely as giddy as I am when the tournaments begin. For those not in the know, we call tournament time March Madness. This is when I go on a college basketball bender.

I became an addict in college, when I was in the pep band. (I played the flute. Next question: do you still play? I mean in theory I still could, but I haven’t in a looooooooong time, so I’m guessing my skill level at this point would be somewhere around middle school band.) Being in the pep band means you’re part of a Band Family that spends a ton of time together and has all the drama and love that a real family has. It also means you go to a zillllllllllllion basketball games with your Band Family. So, a lot of my favorite memories from college involve watching basketball, both women’s and men’s games. Which means there’s all sorts of positive emotions that I associate with college basketball, which of course feeds my addiction.

Right now we’re really just at the start of my bender. It’s Championship Week, when each of the college sports conferences has their championships. Today The Hubs took The Kids to Emerald City Comicon, so I’ve spent most of the day watching women’s basketball games, including watching West Virginia upset Texas in the Big 12 semifinal. I’ve been a West Virginia fan since college, because lots of folks from our band were friends with folks from the WVU band. So, anytime West Virginia is playing against a team that isn’t from a school I attended, I root for them. It was rad watching those two teams battle it out right up to the end of that game. AND, I loved that their Mountaineer mascot at that game was a woman.

I’ll be honest: this is an addiction I have no intention of recovering from. I intend to spend every March for the rest of my life trying to convince my kids to get into college basketball, and if they don’t, well, I guess that means that The Hubs is going to have to do some serious single parenting on game days. And during March, almost every day is a game day.

A good example: last night was the Duke-UNC game, a huge rivalry game. I camped out on the couch with some cheese fries (that The Hubs made) and a glass of wine (that The Hubs poured me) and watched the game. When The Girl asked me to play princess play doh with her, I was like “I’m watching the game, want to watch it with me?” And of course she’s like “Uh, no, I want to play princess play doh” and I’m like “Then ask Daddy to play with you because I’m watching the game.” Which meant that Daddy got to play with a prince made out of play doh. Did I mention he also made dinner for everyone?

Poor guy. 

At least I’ve managed to get The Boy interested in basketball. He plays some, including in an afterschool club, so I’m excited to see if I can get him to switch from being obsessed with the NFL to being obsessed with college basketball. I like watching football, I guess, but I really need someone to dig on college basketball with me. The Girl says she’s really not into sports, which makes me so sad because she’s probably gonna be tall, so imagine what a great basketball player she could be! Le sigh. So, it’s all about The Boy right now. He’s agreed to watch the Selection Sunday show with me next weekend and to fill out a bracket.

Which gave me a great idea: why not encourage my fellow college basketball addicts to be come Worst Wives/Husbands Ever and obsess over the Big Dance with me? So, here’s that you’re gonna do: Download the ESPN Tournament Challenge App and sign up and create a bracket. (It’ll be blank for now because there we won’t know who’s in the tournament until Selection Sunday. If you sign up after Selection Sunday, you can work on your bracket right away.) Then, there’s a link that says “Create/Join Group”and you want to click on that, and then search for Brackets With Beth and join our group.

Is there a prize for whoever wins? No, because I’m cheap. But apparently if you do well compared to everyone else on the ESPN app, ESPN will give you some sort of prize? I have zero shot of winning that–I couldn’t even win my office pool, let alone a pool that includes the entire country–so I haven’t event looked at what the prize/s is/are.

Now go turn on your TV and watch some college basketball, and make your spouse take care of the kids! 

They Can’t Handle the Truth

So, you all know that I’m a co-founder of METUP, and I’m proud of the work they do. I’ve stepped away from active leadership in the group because of treatment, and the current leadership is a group that is incredibly capable and dedicated. But despite stepping away a bit, I remain deeply committed to METUP and its mission: changing the landscape of metastatic cancer through direct action.

What does that mean, direct action? Well, sometimes it’s having a die-in next to the Liberty Bell on Congress’s doorstep. Other times, it’s holding signs in front of a breast cancer symposium remind researchers that we’re not dead yet. And, it’s also going to social media to complain when someone who’s supposed to be helping cancer patients is doing the opposite, and demand that they start doing right by us.

That doesn’t always make us friends. When we point out that Komen spends a tiny portion of their budget on research and a huge portion of their budget on “public health education” that includes $40 million in marketing, does that make Komen happy? I doubt it. But it’s the truth, and it’s a reason why MBC continues to kill 40,000 Americans every year. When we point out that Novartis made $11 billion in profits last year and charges exorbitant prices for cancer drugs, does that make Novartis happy? My guess is no. But it’s the truth, and it’s a reason why people die of financial toxicity.

I don’t think any lives are saved when patient activists won’t talk about these issues. And literally the only goal of my advocacy is to save lives. And if it’s not another organization’s goal, well, then I think they’re part of the problem and not the solution. So METUP and I and other patients will continue to call out bullshit when we see it.

Which brings me to what’s been going on for the last year, and how it’s recently turned out. I want to take a moment to say that what I’m saying now, I’m not saying on behalf of METUP. I’m saying it in my own voice and I’m expressing my own opinion and it’ll come with a hell of a lot of swearing, because I’m mad as fuck. So, don’t read this blog post as commentary from METUP. It’s commentary from me.

Jennie Grimes and other METUP members and I decided it would be a good idea for METUP to apply for membership in the Metastatic Breast Cancer Alliance back in February 2015. We were encouraged to apply by the head of one of the member organizations, and we thought we could bring an important voice to the Alliance that we felt wasn’t strong enough: the voice of patients. There are very few patient members of the Alliance; Metastatic Breast Cancer Network is a member, and a few of the other members have metastatic patients as their representative to the Alliance. But at the Alliance meeting I attended in December 2015, the patient voice was noticeably absent from the room–especially patients whose health was unstable. In addition, we felt we could bring our strength in lobbying and policy work to the Alliance, which doesn’t have any member organizations with lobbying experience, beyond what Pharma does.

So, we filled out the application, and about a month later, Jennie and I had a conversation with two members of the executive board. They discussed our application and we discussed METUP’s mission and advocacy strategy, including our commitment to demanding change when we see a problem that’s harming people with cancer. We committed to never criticizing the work of the Alliance publicly, but we made it clear we would continue to criticize the actions of the member organizations when we felt we needed to do so. The two executive board members said they would discuss our application with the rest of the board, and let us know within a few weeks whether our application had been accepted.

The following month, April, was the Living Beyond Breast Cancer MBC patient conference (an event I always encourage patients to attend if they’re able!), and several of the Alliance’s member organizations were there. A representative of one of the organizations came up to me and begged me not to let METUP join the Alliance. Through tears, this person said “I’m afraid if you join, they’ll try to silence you, and we need your voice.” I said that if that happened, we’d just quit the Alliance, and the person said, “But that would destroy the Alliance’s image in the mets community. People look up to you and Jennie, you’re rock stars to the community, and if you leave, people will think the Alliance isn’t doing good work, and it is.” I told the person I’d think about it.

And I did, and I discussed it with the rest of the METUP leadership, and we decided not to withdraw our application. We still felt that the Alliance needed a stronger patient voice at its table, and we still wanted to see the Alliance begin to lobby and advocate for policy changes. So, we patiently waited for a response to our application. And we heard nothing.

June brought the ASCO Annual Meeting in Chicago, and with it the many patient advocates who attend. Jennie and I sat down with the person who initially encouraged us to join the Alliance to find out what the holdup was. This person said, “Oh, does METUP still want to join? We weren’t sure you did.” WHAT THE FUCK. Jennie assured the person that we did, and said “METUP has clearly done its due diligence. When are you going to give us an answer on our application?” The person assured us that we’d hear within a few weeks.

For the next several months, we repeatedly emailed this person asking when we could expect a response on our application, with no response. Finally I got fed up and contacted Marc Hurlburt, head of the Alliance, to find out when we would get a response on our application. He said he was on his way to to Europe for a major cancer conference, but would call me the following week after he’d had a chance to speak with some members of their executive board members and find out what was holding up our application. I thanked him. And never heard from him again.

Meanwhile, we watched quite a few other organizations gain membership in the Alliance. Tigerlily Foundation, Male Breast Cancer Coalition, The Cancer Couch Foundation…but nothing about METUP. 

Finally, our new president, April Knowles, took over the duty of trying to find out if we were ever going to receive a response to our application. She spoke with Alliance members at the San Antonio Breast Cancer Symposium, but still didn’t receive a final decision until this month: the answer was no. After dragging out a decision on our application for a year, after promising repeatedly to give us a response soon, after we met all the requirements of membership, they rejected the only metastatic patient advocacy group engaged in direct action. 

And, did they give us a letter explaining their decision? No. Did they apologize for the incredibly unprofessional way they’d treated us by failing to decide on our application for over a year? No. Did they promise to ensure patients in active treatment will be represented in the Alliance in other ways? No. Instead, they decided that saving their precious egos from criticism when they do shitty work is more important that actually listening to people with metastatic breast cancer. They decided that hoarding their own power is more important that collaborating with the people they claim they’re helping.

Why would they make this choice? Well, my belief is that it’s because their pharma overlords were uncomfortable listening to the truths about their industry. Since pharma pays for all the Alliance’s work, it’s unsurprising that the Alliance hasn’t done anything to increase research into metastasis, to reduce exorbitant drug prices, or to improve compassionate use access for the many patients who don’t qualify for clinical trials. 

Instead, since the landscape analysis that came out over 2 years ago, they’ve worked on a lame public awareness campaign–because awareness sure has done a lot to save breast cancer lives for the last 30 years–and a patient information brochure with information that was already available from dozens of breast cancer organizations, including several of the Alliance members. If we were in the room, there’s no way we would have said, “Sure, an awareness campaign is a great idea and I’m sure it’ll save a lot of lives. Also, redo all the work that already exists on patient information because that’s a great use of your time.”

When we applied, Jennie and I knew we had a LOT more to offer the Alliance than they had to offer us. We already work with and have good relationships with respected breast cancer organizations like Metavivor and The Cancer Couch Foundation and Living Beyond Breast Cancer and Tigerlily Foundation. We don’t need the Alliance for networking because we do that ourselves. We also don’t take pharma money, so we didn’t need a connection to them to ask for funding. No, what we had to offer was much more valuable than what we would have gotten from them. We would have brought them instant street cred with the metastatic community, been able to help them lobby government, and given them a solid understanding of the real needs of people with MBC.

The Alliance members rejected all that in exchange for making sure nobody hurts their feelings.

You know, the thing that pisses me off the most in the world of cancer is that too few people keep their eyes on the prize: saving lives. There is nothing more important than saving lives. No ego, no money, no fame, no power is more important than a single human life. And if you have money and power and you spend it making yourself look good instead of trying to save lives, you are immoral. Period. We don’t have time for infighting and keeping our mouths shut so no one’s feelings are hurt. PEOPLE ARE DYING. WE ARE DYING.

So, fuck you, Metastatic Breast Cancer Alliance. We see you for what you are now: an organization that refuses to listen to patients and only cares about its own self-aggrandizement. I sincerely hope your member organizations who AREN’T more concerned with their own power than they are about saving lives will speak out about the way the Alliance has treated METUP, and demand that the Alliance do better in the future. Because, METUP stands ready to work with any organization that genuinely wants to save lives. 

Combination Therapy update: Progression

Well, I really hoped this wouldn’t be the case, but the combo therapy failed me. Although my brain has remained stable (which is no mean feat), I’m having lots of progression in bone, and some in liver and lymph nodes. I’m pretty disappointed and so is #BestDocEver–we both had high hopes for this treatment, and given the long list of side effects I’ve had on it, it’s a blow to realize that I put up with all that with no benefit.

What’s come out of this for #BestDocEver and me is a belief that traditional breast cancer drugs will never work on my bizarre rare neuroendocrine breast cancer. Literally every breast cancer drug I’ve been on has failed me, and the only ones that have given me any benefit are ones used on neuroendocrine cancers. So, we’re done with treating my cancer with breast cancer drugs. From now on, I am a neuroendocrine cancer patient.

Since my genomic testing showed that crazy high TP53 mutational burden, we’re hoping to find me an experimental TP53 drug, either via a clinical trial or compassionate use. That’s going to take time, so in the meantime I’ll be starting on carboplatin with irinotecan, a neuroendocrine chemo combo. Whatever the side effects of it are, it can’t possibly be as bad as the combo therapy was. 

Of course, there’s always a monkey wrench in the works, and in my case, it’s the flu. Because of course that’s what I need right now, influenza, amiright? It’s kicking my butt. I’m tired as hell and I have horrible coughing fits. So, we’ve had to postpone the start of the new chemo until next week. Everyone keep your fingers crossed that it goes away quickly!

I also want to say this: even though this combo didn’t work for me, I still believe that genomically-driven combination therapy is the future of cancer treatment. I’m still encouraging patients to get genomic testing, and to reach out to the folks at Avera about trying a combination therapy. Don’t let one failed treatment scare you off–remember how bizarre my cancer is, and how difficult to treat it’s been all along.

So, that’s the news. The little bit of hair I’ve got is going to fall out again soon, and if carbo does what it did in 2015, I’ll probably need a few blood transfusions.  But hopefully it’ll keep things in check until I can get my hands on something better. That’s always the goal, right? Stay alive until you something better comes along.