Monday, March 2, 2015

Day 1,633: #MetsMonday

I am writing this from my favorite room in the house. It is all sunlight and books and clothes strewn in a haphazard fashion on the guest bed here in my home office. The door is closed so that the sound of my typing doesn't become a distraction. I am not working today. There is a sick person in the house, someone who is tired and listless and vomiting.

That person isn't me.

My son, who is not quite 6, has some sort of stomach bug. He is fairly miserable and the house has been wrecked with the smell of vomit and diarrhea. My children never get sick and I had almost forgotten what to do. All of our children's medication had expired years ago, so we needed an emergency pharmacy run to bring his fever down. What do sick people eat, or drink? I mean, people who aren't grown, who can't just look at this as a temporary chemo famine, who don't have enough body there to support what's leaving their bodies? What do sick people do? What do I do for them?

And then I remembered. I just need to let him be sick, do what I can, and hope he feels better. I secretly hope that I won't catch this illness, though that is in the back of my mind. Right now, what matters is not that I could get sick, but that he already is, and I feel badly for him and wish it was over. There is a lesson there. Do you see it?

Today my son who is in kindergarten is home sick. Tomorrow, he will probably be running around and driving me crazy again.

Today is also #MetsMonday, a day dedicated to education and awareness of metastatic breast cancer, which is the only kind of breast cancer that kills, and it kills every single time.

As of now, metastatic breast cancer kills every single time. It is incurable.

I, and other women with early stage breast cancer, still have a 1 in 3 chance of developing mets in the future. Early detection saves not even 10% of the population from developing advanced disease that will lead to their deaths. For most with early stage disease, mets wasn't in the cards. It is not because we are ass-kickers that our disease does not progress. For those who never develop metastatic disease, it is because...their cancer was not that aggressive. Their solid tumor responded to treatment and no microscopic cells got away. It is not because of "smart" surgery decisions that some of us live and some of us die. Metastatic disease cares not one iota whether or not you had a mastectomy. Solid tumors in the breast do not kill women. Read that and repeat. Breasts are irrelevant to the possibility of surviving breast cancer. It is the errant cell that traveled the bloodstream and made it to the liver, the brain, the bones, the lungs, that will kill 50,000 women (as well as a few men) in this country this year, whether they have breasts or not. And no one knows who is who, or when it is coming, or if, or how it will feel to suffer like that if it happens to her.

While it is true that we will all die, and anyone reading this could die in a freak accident tomorrow, and I am much more likely to die before age 45 than any of my friends or acquaintances who have never had cancer, it is a fact that every single person with metastatic breast cancer has been given a sentence that does not end with "surviving." Average survival after a stage 4 breast cancer diagnosis is 28 months. For many women with TNBC, for which there is no targeted therapy, that timeframe is much shorter.

If I were to be diagnosed with stage 4 TNBC tomorrow, I would most likely not live to see my 42nd birthday.

And yet, I have not received that diagnosis. I live with the fear, at once palpable and seemingly impossible, of receiving that news. But the fact that I could get that phone call pales in comparison to the importance of the fact that so many people already have.

Breast cancer has become too commonplace. That is not to say that too many women have it--of course, that is true. Rather what I mean is that people shrug their shoulders at it, throw parties in its honor. People buy pink shoes and garden implements and play pointless Facebook games and talk about tits and hair and strength and hope. The emptiness of the message belies the truth of the disease. We've staged a boxing match but the game is rigged. We tell ourselves there will be a winner, and that winner will be the one with the most moxie, when in fact, we placed all our bets on the guy who was most likely to leave with a concussion that might kill him later anyway.

If you buy pink, if you tout awareness, if you tell your friends and relatives with breast cancer they will "beat it," know this. Almost no money from the plethora of pink merchandising goes to any breast cancer cause at all. Even less goes to programming. Even less than that goes to research. And only about 2% of all research dollars for breast cancer goes towards attempting to tackle stage 4 disease, which is the only breast cancer that kills people. And Stage 4 breast cancer kills people effectively, efficiently, and tragically. A breast cancer death is not a sudden heart attack. You have to suffer first.

Be aware of this: the culture of breast cancer has created a schism among women with the disease. There are those who have mets and those who do not, and way too often, those in the latter camp live in fear not just of the disease but of those human beings who occupy the former camp. Women with early stage disease are actively encouraged to tout all they have DONE to FIGHT and BEAT a disease that has nothing if not randomness on its side. If we give up ice cream and live to be old we are encouraged to pat ourselves on the back. If we give up ice cream and die next year, society does not want to know that. We are only supposed to be bald once, to go through treatment once. We are not supposed to bother the world with having cancer for the rest of our lives. The culture tells us this is TIRING. The culture encourages women with lazy or passive cancer to feel superior to women with brutal and aggressive cancer. But we are all living in bodies where something went wrong. Nobody wins.

Hell, it didn't even take a diagnosis of mets for me to see the fear in people's eyes when confronted with my recurrent cancer. YOU, Katy? But, wait, how could that happen to YOU?

I know, I know. I am no Melissa Etheridge. I have never gone on the record to say how I "beat" and "cured" my cancer with various methods within a year of finishing treatment. I hear women say such things and I just shake my head. Oh, honey. You have no idea if you are cured. You could have mets right now. It's hard to know that, it's hard to face. But it's true.

On this #MetsMonday, I encourage you to lean towards real breast cancer awareness. Do not shy away from people who are dying or will die from breast cancer. Do not pretend that those women do not exist--the research dollars are doing a good enough job of that. Do not treat breast cancer as a game that worthy people win. Do not allow yourself to believe that breast cancer is nothing more than a rite of passage that ends with a cute haircut and a new lease on life.

The truth is hard. But it is worth hearing. When I hammered my oncologist with questions about chemo options after my second diagnosis, he handed me some truth. He said that we are years away from knowing what works for someone in your specific situation. If in ten years, we know with evidence that someone like you would benefit from a certain chemo treatment and you did not take it, and you are still here, are doing well.

And his smile told me something that I already knew: I might be one of those people who still has ten years, and I might not be one of those people. There's no way for me to know. But for all too many women, they already know that those years are something that will happen to other people, not to them.

The sun and the books and the mess and the child hugging a stuffed robot in his bed and the husband who is working and the friends who are reading this and the promise of another day will exist, but not for them. Remember that. Be aware of it.