What’s it gonna do, give me cancer?

Since my diagnosis, I’ve had a lot of people ask me things like “Are you allowed to eat that?” and “are you allowed to drink alcohol?” I usually tell them that my oncologist told me, and I quote, “Under no circumstances should you give up chocolate or bacon” and that after one of my appointments, he said, again a quote, “You should go have a margarita now.” He’s probably embarrassed that I’m sharing this, because I doubt that’s the advice he gives most of his patients. But those of us with terminal diagnoses live in a different world than the rest of you.

Here’s the thing: a lot of what you read about cancer is information that comes from studying people with early stage cancer, not metastatic disease. It’s aimed at “curing” early stage disease, and preventing recurrence. When you already have metastatic disease, you have an incurable illness. The goal isn’t to prevent recurrence; new tumors are going to happen.

Let me say that again: for us metsters, new tumors are going to happen. The only people they don’t happen to are dead people. The only people who don’t die of their metastatic breast cancer are the ones who die of something else before the cancer gets around to killing them. As others have said, we metsters all die of or with our disease.

So, since the goal isn’t to cure us, and we know we’re going to die, what is the goal? It’s to let us have a good quality of life for as long as possible. If eating bacon and chocolate and drinking a margarita makes me happy, my oncologist sure as shit isn’t going to tell me to stop doing it, especially given the dearth of research supporting the idea that eating bacon and chocolate and having the occasional margarita is going to shorten the lifespan of metsters like me. While I’m alive, I want to live. I can abstain when I’m dead, which will be soon enough.

It’s the same with treatment decisions. Early stage disease comes with the traditional slash-and-burn treatments designed to kill every last stupid cancer cell, in hopes that your cancer will never return. Metastatic disease comes with an understanding that even if you cut out every tumor, more will eventually pop up. That’s how metastatic disease works–it spreads, that’s its MO. So, why put you through treatments that make you feel horrible, if they’re not going to cure you? That’s why you don’t get 6 weeks of radiation after your mastectomy; you get 3. In fact, you might not even get a mastectomy. You don’t get 6 rounds of chemo; you get 4. Because, again, the goal is to give you a good quality of life for as long as possible, not to cure your cancer. So, treatment for metsters is a balance, between doing things that will buy you time, and making sure that time isn’t filled with pain and puke and otherwise feeling like shit.

That’s why I’m so glib with people when they ask about whether I’m allowed to eat this or that. If cure was on the table, of course I’d be doing everything imaginable to get to cure. But cure is NOT on the table. I hate to keep harping on that, because I know it hurts the people I love when they have to face that, but it’s the truth. There is no cure for metastatic breast cancer. So, while I’m alive, I’m going to live. And that includes eating bacon and chocolate, and drinking a margarita once in a while.

As my college BFF’s mother-in-law, who died of metastatic breast cancer, used to say, “What’s it gonna do, give me cancer?”

Passing

I’m part of several mom groups, because finding support from other moms is seriously helpful. Not all mom groups are a good fit for everyone, but when you find one where the other women share your values, it’s pretty empowering.

I hadn’t talked about my cancer in one of those groups until recently. I find that when I disclose that I have cancer, and that it’s terminal, people react in predictable ways. There is a lot of “oh, I’m so sorry, how can I help, I wish I could hug you” kind of stuff, because most people are incredibly kind. Just, seriously, amazingly, beautifully kind. I suppose if I was in a group and they didn’t react that way, I’d know I was in the wrong group and I should run away from them.

After the initial outpouring of kindness, the secondary reaction is usually “You put my silly problems in perspective, I feel bad complaining about my challenges because they seem so minor in comparison.” And that’s when I wish I had kept on passing as a regular mom, one who doesn’t have a terminal illness. Because, I don’t want them to feel like they can’t talk about their struggles in front of me.

Folks who are different in a way that makes them “the other” often pass in our society, especially if their difference is one that will lead to oppression. It’s why gay folks sometimes live in the closet, and light skinned black folks sometimes hid their African ancestry in the era of slavery and Jim Crow. If lynching is something that could happen to a group you’re a member of, hiding that identity from the world makes a hell of a lot of sense. But there is danger in passing, too. If one is found out, the lynching can be even swifter.

Obviously being someone with cancer is nothing like that. Nobody lynches people for having cancer, or for pretending they don’t have it. Instead, my cancer merely makes people look at me differently than they did before they knew I had it. I feel like once they know, they don’t see me anymore; they just see the cancer. It’s written all over their faces. It’s incredibly isolating, actually, and sometimes I just don’t want to be “that mom,” the one the other moms pity, the one who makes their problems seem petty in comparison. I just want to be part of the gang.

I used to feel the same about The Boy’s prematurity. When people would ask me how old he was, and I knew the actual answer would mean I’d have to explain that he was born 3 months early, I’d sometimes just tell them his corrected age (that’s how old he’d be if he’d been born on his due date) instead of his actual age. Sometimes I wasn’t up for having that conversation, telling that story; it was just easier to pass as a regular mom, and hide my preemie mom identity. It was a relief when he was caught up developmentally and growth-wise with his actual age peers and the “how old is he” question didn’t lead to uncomfortable questions anymore.

I wish we lived in a world where being different wasn’t so isolating, where our differences didn’t separate us. I also wish I could win the lottery and buy a bungalow in French Polynesia, but I’m not gonna hold my breath that either will happen. So, I’ve learned that coming out as someone with a terminal illness, rather than passing as a regular mom, means that I need to know how to re-establish the sense of community that my difference can destroy.

I do that by reminding the other moms of what we have in common: a mutual hatred of doing the laundry; children whose tantrums make us want to pull our hair out; sleep deprivation. And I also specifically say, every time, that it’s OK for them to bitch about what’s bothering them. Parenting is fucking hard, for everyone, and everyone should have a space to complain about it when they’re struggling, a space where they can ask for support, even if others in the group are struggling in different ways than I am. If my illness helps them feel like their lives aren’t so hard, I mean, that’s fine too. But I sure as shit don’t want to add “I feel guilty for complaining” to their list of stressors, and I don’t want to feel like The Other.

I still pass as non-disabled sometimes–at the grocery store, at parties with people I don’t know that well, that sort of thing. But where I am part of a community, I try to be as open about who I am as possible, and encourage the rest of the community to do the same. Coming together to celebrate our sameness, in spite of our differences, makes us all stronger, and makes all our lives richer.

How many women are living with mets today?

Today, the metastatic breast cancer community is lighting up social media with the hashtags #MetsMonday #BCKills and #dontignorestageiv because we want more funding to go to research that will save our lives. I encourage all of you to help us out by tweeting, particularly at the Cancer charities who are still spending too much on awareness and not enough on research, and by signing Ann Silberman’s petition asking Komen, the biggest breast cancer charity, to spend at least half its money on research.

How bad is the research situation? It’s pretty bad. 

Recently a heartbreaking article by Laurie Becklund, written as she literally lay dying from metastatic breast cancer, made the rounds on the internet. I think it’s fair to say that all of us with mets said “amen sister” when we read her words. I can imagine exactly the pain her family is feeling right now, and I wish I could hug them.

In her piece, Laurie wrote about how we don’t know how many women in America are living with metastatic breast cancer today. A lot of my friends were shocked to hear that. 

Let me explain what’s going on: the database that tracks everyone in America who has cancer is called the SEER database. For breast cancer, it tracks your stage at diagnosis, and it tracks when you die, but it doesn’t track when you progress from early stage to metastatic disease.

Someone like me who was mets from diagnosis is listed as stage 4 in the database, but most women who have metastatic disease weren’t mets from diagnosis. 

So, say, for example, you’re a 45 year old woman and you’re diagnosed with stage 1 breast cancer. You get a lumpectomy, you have some chemo, you have some radiation, and if your cancer is ER positive, you start on hormone therapy, like the Hormonal Sunset I’m on. And then 3 years later, you have a terrible headache that turns out to be a metastatic breast cancer tumor in your brain. Now you’re stage 4. But in the database, you’d still be listed as stage 1.

What this means is this: we literally don’t know how many women are living with metastatic breast cancer right now. We have an estimate based on how many women are mets from diagnosis and how many women die of their disease–the current estimate is about 150,000. The Metastatic Breast Cancer Alliance wrote about the problem in their big report that came out last October. 

Right now, the nice folks at the American Society of Clinical Oncology, or ASCO for short, are trying to rectify the problem. They want to create a database for all kinds of cancer, including breast cancer, that would include treatment information, disease progression–way more data than we’re collecting now. But that kind of database takes time and money to set up, so it’s still a few years away from being a reality. 

I feel like this is the poster child for what a craptacular job we’re doing working towards a cure. We know so little about metastatic disease–the mechanics of how metastasis happens, what cancer types are most likely to metastasize. And we literally do not even know how many people have metastatic breast cancer, let alone what treatments they’re getting and how effective they’ve been.

When women with metastatic breast cancer talk about the lack of research funding going to metastatic disease, this is one of things we’re talking about. And why it’s so incredibly frustrating to watch good money being thrown after bad ineffective awareness campaigns that are doing nothing to save our lives. 

We feel like we don’t count because we are not even being counted.

How The Hubs Feels

The Hubs wrote this last night. I haven’t edited at all–this is purely his heart. I’d love it if you guys shared it around the interwebs.

_______________________________________

Saturday, February 21, 2015

Susan G. Komen
5005 LBJ Freeway
Suite 250
Dallas, TX 75244

To whom it may concern,

I am writing to you asking that you change your focus of your organization and reallocate a large portion of those funds from that refocus to an under resourced area of research. The current Komen mission is focused on education and funding research. I would argue that the first part of the mission has been accomplished and that you need to focus more on the funding research. Everyone is aware of breast cancer. From the NFL wearing pink, the various products that you can buy that have pink ribbons on them to the flowing masses of people that participate in the Walk for the Cure. People are aware of it. They are so aware of it that it threatens to lose meaning or importance of it. My observations of it has that it has become a marketing and revenue generation business, but it feels like it is a business that has lost track of its mission. The statistics I’ve been able to find show that somewhere between 15%-20% of the funds generated by the Susan G. Komen for the Cure charity are spent on research. Using your organizations own statements in the past of “83 cents of every dollar…” that means that about 63% of your funding dollars are spend supporting the other missions then research. Your organization has won the education war. In my 38 years on this earth, I’ve seen a steady increase in awareness as well as society being engaged on the issue of breast cancer. People can talk about it. People are aware of it. They know it is a problem and they know people impacted by it. The mission has been accomplished. It is time to flip the numbers around. According to your own numbers, you spent 38% of the 2013 funds on education, and only 18% on research.
I implore you to switch your mission priorities around. The primary mission should be funding research now and not education. Research funding has been being cut left and right at all levels in science, and while the amount of money that Komen is providing in grants has been up, the percentages are not, or at least not that I have been able to find reference material on. You should instead refocus much of those education dollars on research for stage IV and prevention of cancer progression from the various stages. That we need more then treatments and that while are quick to point out 5 year survival rate for early-stage breast cancer are excellent, but that is not enough. What of those with stage three and stage four? What of the why’s and how’s of the sometimes rapid progression from the various stages? That is the hard work. That is where lives are lost and families destroyed. That is where the need is greatest, where research dollars could have significant impact and spur research in those areas of the greatest impact. Think of what things would be like if Komen came out and said “we are going to spend 45% of the money brought in on research…” You would be effectively tripling the amount Komen spends on research. Not only that, because Komen is one of many and it is in a leadership position, it would send a clear signal of what the priority should be.
My wife has stage four breast cancer. She found a lump in March of 2014, and within a week our families life was upended as the diagnosis went from stage two, to stage three and after MRI’s, brain scans and PET imaging settled on stage four. Since then she has had two different rounds of chemo, a single mastectomy and is getting additional hormone and bone therapy. She recently had another PET scan that showed what is likely cancer in the marrow of her bone of her arm and on T11/12 of her vertebrae where there was none before. She is 38, a wife and mother of a seven year old boy and a three year old girl. She is quite possibly the strongest person I’ve known in my life and I have been there through all of this with her. We both know the statistics and the numbers about the cancer details and the impact that her young age has on the 5 year survivorship rates. The hardest thing on her hasn’t been surgery, the treatments, giving up working to focus on treatment or the doctor appointments. It hasn’t been losing her hair, the exhaustion or the side effects of the treatments. It has been the likelihood that she might never get to see our son graduate elementary school, or high school or college. What makes the tears flow is that she will likely never see our daughter start school. That statistically, she will miss all those moments of their lives and never know her children as adults. That her and I will not grow old together. And so you see, this letter is not the ramblings of someone who does not understand the situation, but one of someone who is all too aware of the realities of what stage four cancer means. That there is no cure and that the only way out of stage four cancer is feet first. That at some day, and I pray this day never comes, that my lovely wife will join the statistics for a final time of being one of the 40,000 women in the US who die from breast cancer every year.
So again, I implore you. Change your mission. Change your focus. Change the math and the equation. Spend more, not just a little bit more, but a lot more on research. Do the hard work and lead. Empower science and medicine to find a way. Celebrate the win of education, but fight the fight that is killing people every day. Fight the fight to give people more time and not just early stage, but late stage as well. So that even if my wife dies from breast cancer that maybe out there in the world there will be someone who benefited from the change of focus. That even if she dies, that maybe someone else who got a new experimental treatment derived from research will live, and that her family/friends/husband/children will be able to hold her close and experience all the things in life that they are supposed to together.

Sincerely,

James Hawkins Caldwell III

Cocktails with the Cult: The Hormonal Sunset

The title of this post is misleading, because usually my Cocktails with the Cult posts are about actual drinks that you can have. But this edition is about the drug cocktail I’m on, and an explanation of why.

So, two weeks ago, I finally had that PET scan that my former insurance company refused to pay for last year. At this point, I’d like to give a shout-out to the federal employee Blue Cross/Blue Shield plan for being the expensive but very comprehensive plan that I need. I read their policy like 14 times to make sure that it actual said that diagnostic imaging didn’t require preauthorization, and that PET scans were a covered procedure, because a lot of insurance plans are refusing to cover PET scans these days, or only approving them after other scans are inconclusive. I will save my rant about that for another day. Suffice it to say, if you’re a federal employee and looking for the Cadillac of insurance plans, rather than a low-cost-I-don’t-expect-to-get-seriously-ill plan, go with Blue Cross/Blue Shield over GEHA.

Anyway, the PET gave us mixed news. The good news was that the hip and sternum tumors didn’t light up, which means at this point the PET found no cancer there anymore. Thank you, chemo and radiation from last spring! In addition, we saw nothing in the chest area where my breast used to be.

The bad news is, I have new tumors, one each on two of my vertebrae. And the bone marrow in my right humerus lit up as well. In addition, the lymph gland near my heart that lit up on the first PET lit up again, like it did on the first PET, and it’s gotten a bit bigger. This means my disease has progressed.

This is by no means cause for panic (I keep thinking of that Monty Python sketch–“Bring out your dead!” “I’m not dead!”), but it’s definitely not good news. My oncologist (who my readers will, by now, realize that I trust 100%) and I agree that sitting on our laurels would be a really dumb idea. He’s not ready to jump into chemo right away, and I saucily told him “Yeah, I’ve got a book launch to do, chemo now would be inconvenient.” Instead, we’re adding a new drug to my cocktail, which I am naming The Hormonal Sunset. Because the goal is to sunset all that pesky estrogen that my cancer likes to eat so much.

So, here’s the recipe for my cocktail that you can’t have. I bring you The Hormonal Sunset:
1 part anastrozole, taken in pill form every day
1 part leuprolide, taken as a shot every 3 months
1 part fulvestrant (the new addition), taken as a shot every month, but with a loading dose at the beginning requiring a shot every 2 weeks for the first month
1 part denosumab, taken as a shot every month to help strengthen the bones my cancer is trying to eat
1 part gabapentin, taken as a pill every night for hot flashes
2 parts calcium with vitamin D, one pill taken in the AM and one in the PM, to keep my bones strong in the face of menopause

We might be adding palbociclib, which is a drug that literally JUST got approved by the FDA this month, to my cocktail if Blue Cross/Blue Shield agrees to pay for it (see how I said such nice things about them earlier? I’m trying to be their new favorite patient so they’ll keep paying for everything I need) and/or if I end up in a trial for it. (I’ll be writing a post on clinical trials in the coming weeks–stay tuned.)

You’re probably wondering how I’m doing with this news. Am I freaking the fuck out? Not really. Because the other thing my oncologist and I talked about is where we’re going with this whole treatment thing. I asked him if getting to no evidence of disease (NED for short) is the goal, and if so, if that’s a realistic goal. And he was like “Yes and yes.” He feels like we can get there with the addition of fulvestrant, but even if that turns out not to work, we’ve still got chemo in our back pocket. It worked so well last spring–remember how the big ass tumor in my breast was just scattered cells in scar tissue when I had my mastectomy?–that we’re hopeful my cancer will respond as well if we need to try it again. That NED is on the table as a realistic possibility, and not just some pipe dream, means I’m not going anywhere anytime soon. And that’s very good news indeed.

Which again brings me back to my shameless sucking up to Blue Cross/Blue Shield, because I’m going to need another PET in 3 months to see how the cancer is responding to The Hormonal Sunset. That would put us in May. I promise to keep you all posted about how that goes.

I’d say cheers like I usually do in my Cocktail posts, but I really don’t want any of you to have to take this cocktail, ever. Seriously.

Where my boob used to be

There’s gonna be some medical stuff in this post. If you’re squeamish, you might want to move on.

Back in the spring when I decided to have my boob cut off, I figured 2015 would be the year I’d have it rebuilt. Because I’ve had radiation, the tissue on my chest wall is too tight to be able to use an implant. So, rebuilding it means getting a tummy tuck, and using that tissue to build the new boob. Or, if for some reason they couldn’t use by tummy, then they’d take the tissue from my butt instead.

The tummy-to-boob transfer procedure is called a DIEP flap, and it usually requires several hours of surgery and then 3-4 days in the hospital, followed by 4-6 weeks of recovery at home. It’s a similar amount of hospital and recovery time for the butt version of the procedure. And it’s a separate outpatient procedure to build a nipple for the rebuilt boob.

All this is to say, it’s be kind of a major procedure, having reconstruction. And unlike the mastectomy, it’s not, like, cutting cancer out or whatever, so it’s not something that’s going to potentially help extend my life like the mastectomy did.

I’m torn about whether I should put myself through all that. I feel like this: if I’m one of the lucky ones, the 1 in 4 who are still alive 5 years after diagnosis, then yeah, I’d like to not have to look at the place where my boob used to be for all that time, and it seems worth it to put myself through more surgery, even if it’s not going to extend my life. Looking at the scar in the mirror every time I get dressed is depressing, and having a breast again could mean a lot to my psyche.

On the other hand, if I only live the average life span from diagnosis, which is 2-3 years, that would mean I’ve only got a year or two to go. And I don’t want to spend an entire month of it recovering from surgery. I’d rather feel good for as much of that time as possible.

I’m also not excited by the idea of surgery in general, like, being in pain and having drain tubes hanging off my body and even more fatigue…ugh. Just ugh. In addition, reconstruction doesn’t always turn out perfect, and even if I do end up with nicely shaped boobs after all this is done, I’m still going to have scars to look at in the mirror.

What blows the most about all this is the whole “if” part. If I live past the average life span. If I don’t. I hope I have a long time left with my family, but I may not, and time feels a lot more precious than it used to. But it also feels like hope is something I should try to embrace, and reconstruction would certainly be embracing hope.

If you’re a metster and you’ve had reconstruction, I’d love to hear your thoughts on this. I feel like we face a more complicated choice than non-metsters–not to diminish the fear and the struggle that someone with “just” early stage breast cancer faces, but it’s different when you know cancer is going to kill you someday.

Fatigue

I need to bitch about a symptom. I don’t do that very often. I try to stay pretty sunny, because honestly, I don’t have a ton of symptoms, and I don’t like complaining. But I’m frustrated and I need to get this out.

Since The Cancer, I get really tired sometimes. On Friday, I had lots of energy, so I tackled folding the 34 loads of laundry that had piled up on top of my dryer, and I swept and mopped. The next day, I was spent. SPENT. I managed an outing with the family to a children’s museum, where I sat on a bench for as much of our time there as I could, and then I came home and just laid in bed the rest of the day.

Fatigue. I didn’t really understand what that word meant, until The Cancer. Oh sure, I got Mom-tired, I mean, it’s exhausting being a mom. EXHAUSTING. But it’s not like this. This is a whole other thing.

The Hubs has been worried that it’s caused by anemia or a low thyroid or something, but reading about what it’s like having mets, it seems to just be part of the game now. I’m still really terrible at pacing myself with this new level of energy I have, and I get fooled by good days where I feel good, and I overdo it. I leave for the east coast in a few days, and I’m worried I won’t be able to get out and have a good time as much as I’ll want to, because I get so damn tired.

What’s really upsetting about it is that it’s yet another way The Cancer is forcing me to change. Add a normal energy level to the list of things the lava has covered up. Add being able to spend a day on the go to the list of things The Cancer has taken away from me. And it’s only beginning. If I think I’m tired now, wait until the next round of chemo. Wait until lung mets happens.

I’d like to say thank you to everyone who’s been understanding about me being so damn tired all the time, and not been mad when I had to cancel plans. I know it’s frustrating for you but it’s even more so for me.

Living in the center of the circle

There’s a thing I read on the LA Times website that I’ve shared a zillion times, because it’s such good advice. SUCH good advice. In most situations. But I’m starting to feel like it isn’t such good advice in mine.

Go read it now. No, seriously, we need a common frame of reference to make the rest of this discussion make sense. Are you back? Good.

Here’s the thing about the circles. In the short term, they make absolute sense. The person in the center of the circle is the one having the crisis, and thus the one who needs the most support and has the least ability to take care of everyone else around them. The people in the next ring need the next most support, and thus are next least able to take care of everyone around them. Comfort in, dump out. It’s a great way to help a friend get through a crisis.

That said, I feel like this model isn’t sustainable in the long term. Eventually, the person in the center starts to feel isolated, a delicate flower that everyone tiptoes around and hides their feelings from because they’re trying not to be a burden. Which means, the person in the center doesn’t get to have full and meaningful relationships with the people around her. And frankly, I don’t want to live like that for the rest of my life.

I mean, I can’t prop everyone up. I just can’t. I don’t have it in me. But at the same time, when everyone is putting on their brave face and not telling me that they feel sad or angry or whatever it is they feel? Yeah, that doesn’t fool me. It just makes me feel pitied and less-than and so very, very alone, rather than supported and loved–which I know is everyone’s goal, because my friends and family are wonderful big-hearted people.

Let me put it another way: it’s hard for me to talk about how I feel to people who don’t ever talk to me about how THEY feel. If you’re bottling, I’m bottling. We’re not having a relationship–we’re both wearing masks.

What’s the answer, then, for those of us who have to live in the center of the circle for the rest of our lives? The fuck if I know. I’m starting to think that all I can do is kvetch about how people are making me feel shitty by trying not to make me feel shitty.

Or maybe it’s this: maybe it’s about remembering when the immediate crisis of treatments and feeling ill are over that the person with the cancer in the center of the circle is still a person, not an object of pity, not a delicate flower that can’t be exposed to anything negative. We’re people, and we want to have real, honest relationships with other people.

White Privilege and Metastatic Breast Cancer

Recently I was reading a great article about a young mom who was diagnosed with metastatic breast cancer, and there was a link in the article to the SEER data on breast cancer. (For those who don’t know, the SEER database tracks everyone who gets cancer.) I decided to geek out and surf the data, because statistics are fascinating to me. I found this chart that shows 5 year survival rates for different cancers, broken down by race and age, and it made me feel really uncomfortable.

One of my favorite former coworkers is a really nice woman named Z. I loved working with Z because she always communicated so well–and those of you who have ever held a job know exactly how awesome it is to find someone who communicates well. Z met her husband, M, in the elevator of our office building, and they are the sweetest couple. Z is African-American, and she’s retiring this year, so I can say without letting out any big secrets that she is over 50 (although she doesn’t look it!).

According to the statistics from the SEER database, the odds that a white woman under 50, like me, will be alive 5 years after a metastatic diagnosis is 36.2%. For an African American woman over 50, like Z, the odds are only 13.8%. That means I am almost 3 times as likely to survive 5 years with this disease than a woman like my friend Z. If she was under 50, like me, she’d be in better shape, but she’d still only have a 22.7% chance of being alive 5 years from diagnosis, significantly lower than my odds.

What. The. Fuck.

I’m trying to wrap my head around what’s going on with this data. There are probably genetic influences in cancer deaths–black and white women both have higher death rates than Asian, Pacific Islander, Native American, and Latina women. The data about Native American death rates was especially surprising to me because it’s pretty rare for white women to have higher death rates than Native American women from any illness–access to health care on reservations in particular is pretty shitty compared to what I can get as a middle class white woman with health insurance living in a major city. But given the higher incidence of BRCA genes in women of Ashkenazi Jewish descent, and given the higher incidence of triple negative breast cancer in the African American population than in other populations (triple negative breast cancer is particularly deadly), it appears that genetics are playing a roll.

That said, researchers studying this stuff say that genetics only accounts for part of the problem. The other part is access to treatments. Here’s where shit gets fucked up: in a cancer where there is very little science can do to treat it, like pancreatic cancer, the death rates for black and white folks are pretty similar. For breast cancer, where there actually is stuff they can do to treat it, oh look, black folks are dying at higher rates than white folks. You can also see this in the way that the racial disparity in breast cancer survival has grown over the years–as new treatments have come along that extend the lives of metastatic breast cancer patients, the 5-year survival rates for white women have gone up significantly more than they have for black women.

And now we see the real problem: it’s poverty in the black community and lack of access to adequate health care that’s killing people faster. And poverty in the black community doesn’t come out of nowhere; it comes from generations of racist policies, starting with slavery and continuing through segregation and redlining, that has led us to where we find ourselves now: with black women more likely to be living in poverty, and thus dying of metastatic breast cancer at close to the same timeframes they were in the 1970’s, while white women are living longer with their disease because they can afford health care.

Now, Z is solidly middle class, like me, and she has good health insurance, so if–god forbid–she ever got metastatic breast cancer, hopefully her odds would be better than if she was living in poverty. But the problem is this: that doesn’t make me feel any better about this disparity. Z’s life has just as much value as mine, and it’d have just as much value as mine if she was poor too.

Women leaving their children motherless because of lack of access to health care should not be happening in a country as well off as ours. It’s morally wrong. I’m going to say that again: it is morally wrong that access to life-saving, life-extending medical care is only available to people with money, and doubly so because of our country’s completely fucked up history of keeping black people poor.

We have to do better than this. We just have to. Women’s lives are at stake.

Let’s Write a Book Together

You guys, I’ve got an idea, and I need your help. I think it would kick ass to put together an anthology of essays by people living with metastatic breast cancer. I have absolutely no idea how to put an anthology together, like, none whatsoever, but isn’t it a great idea? If you agree, and you’d like to contribute a piece or edit the book or you have a book agent or you run a publishing company or whatever, I’d love to hear from you. Drop me a note at cultofperfectmotherhood@gmail.com.