7 months (or the natural history of breast cancer)

Cancer, chemo, and chocolate chip cookies

I read something interesting this morning.  I was searching for a chart I had seen a while ago and came across an article that included data I hadn't seen before about the "natural history of untreated breast cancer," which, at least in this context, means what happens if you just leave the cancer to do what it does and don't try and stop it.  I guess I don't really need to tell you, but, as it turns out, things don't go well when you do that.

For very obvious reasons, the patients studied for this were diagnosed between 1805 and 1933.  It basically looks at women who had breast cancer before there were treatments for breast cancer.

(On a related note, be aware that the article itself is over 10 years old and a lot has changed in the treatment of metastatic breast cancer in the intervening decade, so I wouldn't actually recommend reading too much into the facts and figures quoted in the rest of the article any more than I would recommend going right now to Blockbusters so you can rent that great new movie Moulin Rouge! on VHS to keep you busy while waiting for book 5 of the Harry Potter series to come out.  Especially because the stats reported on in the article were from a time when Tupac was alive and Friends was a new show on TV.)

But anyway, I had read some time ago that untreated breast cancer patients had a median survival of about 2.5 years from the time the lump was discovered to eventual death.  Turns out it's actually 2.7 years and this article reports some more figures I didn't know before, including that women with untreated grade 3 breast cancer (the faster growing kind that mine is) lived a median of 22 months--that is, half of them died in less time and half of them survived past that point.  Also, not one of the untreated grade 3 patients was alive 5 years later.

So, I am very happy to report that 22 months from finding the lumps, for me, was last February and, I can assure you, I am still alive.  Go science.  Better living--and just plain being alive--through chemistry is at work in my life.

February, you know, was winter, spring, summer, and newly fall crisp days ago.  Also 41 blog posts of varying degrees of stress, hope, resignation, and silver-lining-searching ago (wouldn't you know it, exactly, to the very day, 22 months after my first biopsy that confirmed my stage III grade 3 cancer, I posted this stressed out little post about my impending stage IV diagnosis.  Which, quite frankly, while a difficult and unpleasant time, was still better than being the day I died.)  And, it was also lots of nice, normal, going about life days ago--which is kind of a miracle given what would have been going on (or not going on) had I been born roughly 80 years before I was.

I have more scans coming up next month that will give us a better idea of what's happening now, but at the moment I feel really good.  And happy.  And definitely not 7 months in the grave.  And for that, and every single anything I've done over the past 7 months (including the stupid things like mopping the floors and playing Plants vs. Zombies, and also the fun things like vacation days, birthday parties, and dying parts of my daughter's and her friend's hair blue, because it all works together to make up a life), I need to thank my surgeons, oncologists, and all the people who brought us some really spiffy advancements in chemotherapy, radiation therapy, and hormonal therapy.

What have you done in the past 7 months that you're glad you didn't miss?

Don't notice me

I tend to be kind of an introvert, so maybe it's not surprising, but the weird thing about being diagnosed with cancer was the hard to navigate line between wanting to be taken care of and wanting everything to be completely normal.

I read several bloggers who let their bald heads proudly proclaim that cancer wasn't keeping them down.  I can appreciate that, but I reject the converse idea that wearing my awesomely realistic wig and not talking about cancer made me it's victim.  

I believe every woman who goes through this needs to do what she needs to do and for me, not being "that cancer girl" when I didn't need to be was something I needed.

In a lot of ways I was very lucky.  My insurance covered the wig (my state mandates that, I feel like maybe that isn't true nationally, but I'm not 100% sure) and I found the most comforting and talented wig seller (Mary Aframe at The Women's Image Center--if you're anywhere near central Massachusetts, I highly recommend giving her a call!) who helped me select a style and color that were just perfect.  Feeling comfortable about looking "normal" was important to me.

I told my coworkers I was having surgery (hell, I was out 7 weeks) but I only told my boss it was cancer until after the nodes were discovered to be positive and chemo was required.  I know this may seem odd, I understand that, but I just wanted as much of my normal life to be normal as possible.

I did tell my church family, and their prayers and meals were something I clung to.  My family and closer friends, of course, knew and especially my inlaws were incredibly helpful.  I definitely benefited from letting telling some people about it.

Maybe I'm just a wimp.  I never know how to respond to sympathy like that--do I put on a brave front?  Comment and say something that may end up being TMI?  Grin and bear it?  Because really, when I was dealing so much with cancer, the last thing I wanted to talk to people who weren't a) medical professionals or b) people who know and love me, was cancer.

I understand putting a living and surviving face on cancer may have been a great public service and an encouragement to others, but I just didn't feel like doing it.

Even a year later when I did a cancer walk with my husband and daughter, the big pink "survivor" sash felt odd and I didn't really know how to respond to the cheering "encouragers" along the course. It probably says plenty about my social anxiety and lack of reasonable interaction skills, but if I try to avoid uncomfortable situations on a good day, I guess I'm not too surprised about how I chose to deal when you throw cancer into then equation along with it!

If I had my wish, the cancer would have gone away--poof!  Wasn't possible (obviously!) so maybe having it gone away from large swaths off my life seemed like the next best thing.

It is weird, because now that I'm done with everything, I do sort of want a little credit.  I want people to understand what I went through and respect that.  But I only want it to be part off my identity to a certain point.

I don't say any of this to judge people who feel differently.  And I understand that people who act differently aren't judging me (or if they are, too bad, because I'm not getting it).  But I guess I feel the need to put my feelings out there and say, hey, there are all kinds of ways to deal with this and you can do what feels comfortable.  Goodness know there's enough discomfort going with it without pressuring yourself with more.  

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.