This year during Black History Month, my son’s school, which is very white and very affluent, met with students from a high school in a poor neighborhood where people of color are the majority. They talked about what’s going on in their neighborhood, and how they needed help advocating for the school district to provide bus passes for all students at the school. They need the bus passes because it isn’t safe for kids to walk to school in their neighborhood, because there’s so much crime. Our school stood with the high school students at the school board meeting, to show that we were behind them and we care about their community.

Our students learned what being an ally is–it’s not about being part of the community that needs help, but about standing with them and using our privilege to help them. An ally is someone who not just cares about a community in need, but also does something to support them. And what that something is, is what the community says it needs, not what allies think that community needs. So, being an ally requires listening to the community and then asking “How can I help?” 

There’s been a division in the breast cancer world between early stage patients, and metastatic patients. Recently we had a #bccww chat where we talked openly about why this is happening. My theory is this: historically, metastatic patients have felt excluded from the larger breast cancer narrative about “beating” cancer and then celebrating with pink feather boas and “survivor” events. Metastatic patients don’t beat cancer, and we don’t survive cancer–we die of or with it, and mostly of it. 

For a long time, metastatic patients were mostly silent about it. It’s hard to speak out when you’re the only one in your community with metastatic breast cancer, and until the birth of social media, we often felt very isolated. But social media has been a game changer. We can now connect across geographic boundaries, and we don’t feel so alone–and so we’ve begun to speak out about how the early stage-focused narrative of breast cancer excludes us. And we’ve begun demanding that the breast cancer world include us and hear our voices. 

That’s triggered a backlash from some early stage patients who believe in the early stage narrative. Like Joan Lunden, they say we’re too bitter and angry and that we should follow the dominant narrative about staying positive–as if being honest about the reality of treatment only ending when we die is us just being “too negative.” And sometimes people in the mets community say things that belittle the experience of early stage patients, as though having early stage disease is no big deal. As if we’re not all experiencing something traumatic in having breast cancer, at any stage. Our traumas are just a little different–ours is ongoing trauma, and early stage patients’ is past trauma that has a continuing impact.

This division between early stage and metastatic breast cancer patients is a serious problem. We need to begin to build trust and understanding between us, because we in the metastatic need allies in the early stage cancer community. We need allies who see we’re in need and then do something to help us. 

I think it’s vital that early stage patients open their hearts and learn what life is like for metastatic patients. Too often our voices are still ignored, as are our pleas for help to the wider breast cancer community. Our needs aren’t part of the breast cancer advocacy that the National Breast Cancer Coalition pushes. While prevention is a noble goal, it ignores those of us who are already living with metastatic cancer and need help now, before we die. And when we bring it up, too often we’re silenced. Listening to us a necessary first step for early stage advocates to be an ally to our community. 

And that something is helping us advocate for research dollars to flow to better treatments for metastatic cancers. 90% of cancer deaths happen because of metastasis and yet very little of the research dollars flow to metastatis research. In breast cancer, it’s only 7%–and virtually all deaths from breast cancer are from metastatic breast cancer. I know some folks like Susan Love have questioned that figure, but if you look at how MBCA conducted its research–literally going through every grant to see what it area of research it was funding–you’ll see that this is a solid figure. And an alarming one. 

And, I hope people with early stage cancer will understand that we need allies because we’re dying. It’s not easy to be an activist when your ongoing chemotherapy leaves you too tired to get out of bed. It’s not easy to get the ear of people in power when you can’t afford to travel because you can’t work anymore. It’s not easy to demand change when you’re dead. The privilege of surviving cancer is something we in the metastatic community don’t have, and we really hope that early stage patients will use that privilege, their staying alive, to help us who cannot stay alive. We literally can’t do this alone–we need allies, who listen, and then ask “How can I help?” 

Time for an update on how treatment is going: I’m dealing with some side effects of Xeloda. My fatigue is still real. That blood didn’t do much for my energy–I’m no longer anemic, but still fatigued. We went out to the coast and I was too tired to go for a walk with the family. I walked up the stairs of our beach house to get my coat, came back downstairs, and was like “Nope, that was all the energy I had.” I didn’t even get to see the beach while we were there, because I literally didn’t have the energy. Sigh.

Fatigue sucks, but it’s not my only side effect of Xeloda. I’ve also developed what is known as Hand-Foot Syndrome. Hand-Foot isn’t talked about much outside of cancer land, so a lot of folks who don’t have cancer aren’t familiar with it, so let me explain how it works. You take Xeloda, and after you’ve been on it a bit, you start developing changes in the skin on the palms of your hand and the soles of your feet. At first, I got weird brown spots on the palms of my hands, like really big freckles, and then the skin started to get really dry.

Then, when I went to Disneyland in January, I wore sensible shoes the whole time but still developed enormous blisters. They healed, but now the skin around my nails on my fingers and all along the bottom of my feet have become really peely. Like, every time I take a shower, my skin starts to slough off as soon as I get out of the shower. It’s alarmingly gross, like, seriously just disgusting amounts of dead skin just falling off.

And then a couple weekends back I started to get some neuropathy in both my hands and my feet. Neuropathy is like a numbing/pins and needs feeling, like your hands or feet fell asleep. Add that to the truly debilitating fatigue I’ve been having (it’s really hard to be an effective parent when you can’t get out of bed) and it was clear my Hand-Foot was getting worse.

#bestdocever had warned me of all this when I started on Xeloda, and recommended I use a cream with urea on my hands and feet, because there have been studies showing urea helps with the dry and peeling skin. So The Hubs bought me some Udderly Smooth (the container looks like a cow, and we call it “Mom’s Cow Lotion”), which I was using obsessively, and yet, the peeling continued. So I asked some friends who’ve been on Xeloda about what they used, and they recommended a cream called Revitaderm. It’s a whopping 40% urea. 

I put it on my hands and the dry dead skin started just sloughing off, like, immediately, like, the act of rubbing the lotion into my skin resulted in all this dead skin peeling off. Same with my feet. The skin underneath seems healthier and less peely, but holy hell, it’s really disgusting watching all that dead skin fall off. I keep joking about having leprosy. 

But the cream doesn’t help with the neuropathy, so I met with #bestdocever last week and we decided I should take an extra week off Xeloda (I am on a 2 weeks on, 1 week off schedule) and drop my dose. I had started on 8 pills a day, dropped to 7 in February, so now we’ll drop me to 6. That’s still a shitload of Xeloda, so I’m expecting my fatigue to continue, but I’m hopeful that the Hand-Foot will subside a bit. On this extra week off, the neuropathy has subsided, so that’s something. If it got worse and I couldn’t type, I’d lose my mind.

The thing with having terminal cancer is that nobody in their right mind would take a drug that keeps them in bed all day and makes their skin fall off–except that we know the alternative is, we die. This is why the experience of metastatic patients is so different than the experience of early stage patients. I don’t mean to minimize the experience of early stage patients because all cancer treatment is shitty and it leaves lifelong impacts, both physical and emotional. But for early stage patients, treatment ends. For us, treatment only ends when we die–and so we put up with pretty awful treatments, because the alternative is death. Xeloda is one of the gentlest chemotherapy available, and my side effects from here on out will only get worse. 

This is why I’m so passionate about research. I don’t want to live like this. I want to have energy, and I want my skin not to fall off, and I want my metster friends to not have diarrhea and need adult diapers. The only way to improve the quality of life of metastatic patients, and the only way for us to turn our disease from terminal to chronic, is to research new treatments for metastatic cancers. I know that scientists can help us live better, if only we’ll support their work.