How I danced with the red devil and shot mustard gas through my veins.

Sounds kind of poetic, doesn't it?  Poetic and a little hardcore.  I like that.

Like many, many stage III breast cancer patients, I was given a chemotherapy regime of dose dense Adriamycin and Cytoxan for 4 doses over 8 weeks, followed by Taxol for 4 doses over 8 more weeks.
 

Marc Chagall's "The Dance"

Adriamycin is red and strong and, according to multiple sites on the internet, is sometimes called "The Red Devil"--not that anyone in the cancer center ever called it that in my hearing, of course, because that would be rude--but for each infusion of it I watched them hook the red bag to the IV in my port and watched the Kool Aid punch red liquid flow through the tubing and into my body.  Later that day, the same red had made its way around my body and remained red as it made its way through my kidneys and out of my system.

Cytoxan, on the other hand, doesn't need a hardcore nickname.  It isn't mustard gas exactly (a little poetic license on my part) but it's a nitrogen mustard akylating agent and a close cousin to the chemical warfare agent.

These, as I mentioned, are followed up by taxol, which for many people is the easier part of the ACT chemo with fewer harsh side effects.  For me, it actually seemed a bit harder--taxol is when I finally lost the last of my lashes and brows and dealt with the worst bone pain and neuropathy, expressed as both numbness and as a relentless, prickly pain.

Dose dense means that the doses are given closely together (without being deadly, of course) and this feat is accomplished with the help of a variety of anti-nausea agents and another drug called Neulasta which requires a second visit 24 hours after the chemo infusion but is required to increase production of white blood cells killed off by the chemo.  Not that the white blood cells ever got to normal-person numbers, but the Neulasta helps you get enough white blood cells together in your body to continue with the chemo.  The goal of dose dense scheduling is to keep hitting the cancer cells hard and deny them time to recover between infusions.  It's the chemo equivalent of a constant seige.


For me, the particular chemo I would have was discussed after my surgery, during a visit with my oncologist.  Before surgery, my cancer team had thought, based on the MRI (and possibly some of the other scans I'd had--I'm not really sure anymore) that I would probably be stage II, with a decent chance of avoiding chemo altogeter.  Immediately after surgery I knew they had found a lot of cancer in the lymph nodes, but I guess I didn't put 2 and 2 together because it wasn't until that appointment that I finally understood I was now stage IIIa.  I am proud that at that appointment I held back my tears and I was able to keep it all together enough to talk about the most important thing at the moment: where we were going to go from there.

I had, of course, learned enough about the different stages before that appointment to know the general trends in odds and stages, but it wasn't until after I'd finished with chemo that I finally asked my oncologist about how that related to me.  Weird, I know, but at the time I figured no matter what the odds were, for me it's just binary--either I'm alive or I'm dead and odds don't change that.  Now I care more about the odds, and at times I cling to them like a cross, but when it was all new and I was just trying to get from one day to another, I didn't see any reason to bother asking.  I knew stage III was not good news and when she said we really needed to hit the cancer very aggressively, and she recommended dose dense ACT chemo, even with it's side effects, I was all in.

As I understand it, until they develop something new, dose dense ACT chemo is the most aggressive chemo they give for breast cancer, equalled in aggression by some other 3rd generation regimens but, as the phrase goes, never surpassed.  It's also extremely common for stage III her2- breast cancer, so I have a lot of sisters in this.

Side effects can include heart damage and permanent neuropathy, so it isn't given without a good reason, but lots of cancer that's already spread through the lymphatic system counts as a good reason.

I remain grateful to have had this kind of chemo in our bag of tricks to throw at this.  My cancer was a nasty, aggressive kind, fast moving and mean, and I needed something heavy to throw at it, but it was hardly fun, because, well, because chemo.

But at the same time, now that it's over, in a lot of ways I enjoy being able to say I did that and made it through.  It makes me feel like a badass punk kid who you better not mess with because I eat barbed wire for breakfast and spit nails for lunch.  And, coming from a place where cancer seriously messed with my body and tried to take my life, I feel like I can probably give myself permission to indulge my inner "don't mess with me" from time to time.

I like to think my stage III sisters and I are a hardcore bunch, and, to me, that has a lot to do with having to learn to live with lots of fear and uncertainty, having to adjust to viewing victory as a moment on the road that may or may not be a lasting endpoint, having to understand about not enjoying the luxury of giving "quality of life" more weight than therapeutic benefit.  Maybe that's not the case for all of us at stage III, and I won't even try to speak for other stages, but from my experience and experience on my favorite cancer forum, I think it's something a lot of us do struggle with and feel pushes us just a step or two outside the usual circle of breast cancer patients.

I'm really not trying to diminish the battle of other women who were lucky enough to have been an earlier stage.  Heck, I thought I was one myself and it was still a fight.  I understand that even stage I and II can metastasize and, despite better odds, it's still scary.  Plus, I know I am very fortunate not to be working out stage IV issues right now.

The odd thing is, I've been rewriting this post a number of times trying desperately to say what I want to say without sounding like I'm not appreciating the struggles of other women at other stages and places.  But at the same time, I wonder why I can't say just say, "we took on something that was damn hard and we fought our way through.  Other people did other things, but we were here and we did this."  We've been through a lot to have this chance at life.  And right now I'm not in a mood to downplay that.

I've said before (and I meant it) that I'm not brave, just stubborn, but I'm also strong.  I mean that, too, I know I'm strong.  I danced with the red devil and shot mustard gas through my veins, and I'm still here to tell the tale.  You don't want to mess with me.