After being in treatment for metastatic (stage 4) breast cancer for about a year and a half, in August, scans showed that my cancer had spread fairly significantly. Enough for my doctor to change my treatment and put me on an oral chemo (that costs $11,000 for 28 pills, thankyouverymuch). I was under the false impression that oral chemo would be easier to handle than IV chemo. While there are many differences, and it depends on each individual patient, well, oral chemo just sucks.
In the three months since I've been on it, I've had an upper respiratory infection, the shingles, had a toenail surgically removed, and landed in the ER for possible blood clot in my lung. This is all on top of the everyday side effects like mouth sores that got so bad I couldn't eat and had to take a break from the chemo to let them heal. Exhaustion/fatigue, where some days I can't get out of bed, and when I do, it can take me a half hour just to get dressed. Changes in appetite, where some days I consider it a win if I can eat saltines. Nose bleeds. Chronic cough. And the latest side effect, my membership in the diarrhea club of America.
I was supposed to have scans in December (every 3-4 months) but at my last follow up visit I had new pains and some of my lab numbers were a little off, so my scans were moved up. So, take the normal scanxiety and add in those issues and the rush to get the scans done, and, well, Ativan cookies and Xanax smoothies were on the menu.
But the next day my APRN called me with the results. "Overall good." No new spots, and a few spots actually shrunk. This is great news, right? Yes, it is. So why don't I feel like celebrating? Maybe it's because I know how this game is played, and that while things may be (overall) good today, tomorrow they could change. Maybe it's because I feel guilty, that while my treatment seems to be working, many of my friends' treatments aren't and they are getting sicker. Or maybe it's because, while the new treatment seems to be working, it's making me feel like shit.
It's shrinking the cancer, but it's also shrinking my sense of who I am and definitely who I used to be. I was very active before cancer, and now I need to rest after going to the grocery store. I was always a morning person, but have to hit the snooze button on my alarm clock more times than I care to think about. I like to go out and have fun but have turned down invite after invite because I'm just too damn tired.
Now, I'm not complaining. No really I'm not. Seriously, I'm a Jew from New York, I can show you some complaining. But, well, it just makes me mad. Those of us with cancer have to sacrifice so much from the get go, and now, even when a treatment works, we continue to sacrifice. Cancer has been around for like, ever, right? So why are we still guinea pigs? Is it too much to ask that after all these years, we can finally get a treatment that works without all these douchebag side effects? No, it's not too much to ask. Hell, it's not even too much to expect.
As someone with metastatic breast cancer I'm frustrated, pissed off, and downright sick of being written off. Everyone, which includes, you know, everyone, even you, is not only at risk for getting cancer, but after diagnosis (even at stage 1) is at risk for the cancer spreading. And for those of you sitting there shaking your heads, just remember, cancer is unpredictable. And while it's great to be optimistic, we need to be realistic as well.
Yes, things can change on a dime, but right now my cancer is shrinking, which means that today, I will not die. And probably not tomorrow either. I personally feel that my life, and the lives of all the other men and women living with metastatic breast cancer are worth the fight. The fight to get money to go where it's needed and where it belongs. To research. To finding out where this cancer came from, why it spread, and what we can do get rid of it, or even just make it stop spreading, and without causing debilitating side effects.
But there's no where near enough money and resources dedicated to metastatic cancer as is needed. There's not enough money going to organizations like metavivor.org and mbcn.org, who focus on research. And that needs to change. Like, yesterday.
It should be common sense. To find out why and how cancer is spreading, look at those of us whose cancer is spreading. Seems simple. And on one level it is, but it's also expensive. But, and this is just a personal opinion, I think our lives are worth it.