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Today is World Cancer Day and I feel like I should say something about it even though I would much rather be in the UK celebrating Harry Potter Book Night.

WorldCancerDayBut now I’m in the exclusive club of women (and some men) who have metastatic breast cancer. So what is Metastatic Breast Cancer? I think most people – myself included – don’t really understand what it means. I certainly didn’t know anything about. I won’t lie, when I first heard I had breast cancer I thought maybe that meant I would get new boobs. Truth: I will not be getting new boobs. Even if I did get my boobs removed, reconstructive surgery is a long and painful process. And honestly, I don’t feel like I have the time for that – no matter how much time I have left.

So here is what Metavivor.Org has to say about all this:

If you know someone who has died from breast cancer, they died from metastatic breast cancer. Metastatic breast cancer, or stage 4 breast cancer, is the spread of breast cancer to non-adjacent parts of the body — most commonly to the bones, liver, lungs and/or brain. Many effective breast cancer treatments exist, but if the cancer metastasizes and spreads outside of the breast, there is no cure.

100% of breast cancer deaths occur because of metastasis, and almost 100% of people whose breast cancer has metastasized will die from it. In the United States alone, this means that more than 40,000 vibrant lives are lost each year.

Despite these stark realities, the popular breast cancer fundraising movements give on average only 2% of their research funds to researching metastasis. Instead, their primary focus is on prevention, which does nothing to help those already diagnosed, and early detection, which does not impact those facing the ultimate death sentence of stage 4 breast cancer. And while only 6% – 10% of initial breast cancer diagnoses are metastatic, 30% of patients diagnosed with earlier stage breast cancer will eventually develop stage 4 breast cancer and die.

This does not need to happen.  Many metastasis researchers believe that metastatic breast cancer could become a chronic, rather than terminal, disease, if only there were more money to do the research necessary to develop effective treatments. As such, METAvivor has launched a nationwide effort to raise awareness about metastatic breast cancer, with a push to dedicate 30% of all breast cancer research funds toward the metastatic breast cancer that 30% of patients will ultimately face.

Do I think you should donate? Well, I wouldn’t say no but this isn’t me asking you to donate. Half of the women I know are spending their time cooking for my family and dropping food off at my house. I don’t want to ask for more than that. No, this isn’t me asking for money. This is me trying to spread awareness of what Metastatic Breast Cancer is, at least as far as I know. Tomorrow will be the two month date since my diagnosis. Two months. That isn’t a long time even though it feels like I have been sick FOREVER and barely remember what it was like to not be sick.

These are the facts as far as I know them: My girls will always have a chronically ill Mum – at least for as long as they get to keep me. Because of the metastases in my bones I will probably never be out running again. Oonagh keeps asking me if I’m better so I can pick her up or give her a piggy back. Will that ever happen? Don’t know. Although at this point I will be happy when I have the energy to walk around the block or pick my daughters up from school.

Today I went to acupuncture and Reiki because I would pretty much drink my kids pee-filled bathwater right now if I thought it would keep me around longer. But sometimes it is hard because all I want to do is take a break from cancer. I would like a couple days off of painful ribs and being careful and thinking about it and the worry and anxiety that comes with such a diagnosis. But I don’t get a break from cancer no matter how much I cry about it.

Another thing I have learned since getting cancer is that people are always curious as to why you got cancer – what did YOU do to GIVE yourself cancer. This is a way people make themselves feel better and to reassure themselves that they won’t get cancer. Well, I can tell you this. There is NOTHING I did to give myself cancer. Why do I have it? I don’t know. I was active, ate a whole-foods, plant-based diet for the last five years without stressing about it. Stopped eating red meat 20-years ago and was mostly vegetarian for years. Never drank coffee. I could count my yearly alcohol consumption on one hand with fingers left over. There is no history of breast cancer in my family.

As my big sister so eloquently put it, “If you have cancer, the rest of us are fucked!” But of course, that isn’t true either.

There is a big push right now putting the focus on prevention and early detection. I think both of these things are great but I do take issue with some of the prevention literature because it makes those of us who have breast cancer feel like we have failed in some respect. I didn’t fail. I didn’t do anything wrong. If you listen to the prevention literature I did everything right. I still have cancer and there will probably never be an answer as to why.

Our biggest hope is that because I was so healthy before, because of being active and our diet of choice that I can fight this disease for as long as possible. I know you aren’t supposed to think of a number when you get a diagnosis like this but an old Chinese fortune teller once told my sister and I that I was going to live to be 93 years old and that has always been my goal. Certainly not the 3-year median prognosis that women diagnosed with metastatic breast cancer get. I have too much shit I need to do so I’m ignoring that number and picking my own. I’ve been looking forward to being an old lady since I was little and I’m going to keep looking forward to it.

So that’s my little World Cancer Day rant. Please don’t buy me any pink ribbon crap.