The goal post keeps moving!

Well, we got some more fun news in cancer land this week. My oncologist called on Monday, and she informed me that between my first biopsy when I was diagnosed in May and when they took the tumor out of me in October, the composition of my tumor changed, at a cellular level. As a reminder, when I was first diagnosed, my tumor was estrogen receptor positive, progesterone receptor negative, and HER-2 negative.* Well, during chemo, turns out it morphed into an estrogen receptor positive AND a HER-2 positive tumor. This type of evolution is pretty rare. Generally speaking, rare in the world of cancer is not great, because there's not a lot of tried and true methods to follow. But more on that later. 

First, what does this actually mean in terms of my treatment and prognosis? HER-2 positive tumors tend to be more aggressive, i.e. faster growing, faster spreading, with a higher risk of recurrence (that's bad). But for the last 10-ish years, there has been an immunotherapy drug used called Herceptin/Perjeta used that is highly effective in targeting HER-2 cells and greatly reducing recurrence risk (that's good). However, this infusion is administered via IV once every three weeks for an entire year (that's bad). Most people don't have very bad side effects from it though** (that's good). However, most people also know their HER-2 status from the beginning of treatment and generally take it concurrently with their final few rounds of chemo, then continue it on its own for the remainder of the year, which leaves me in this gray area as to how I should take it (.... that's bad).  

So my oncologist asked three even more senior oncologists how they thought she should administer the immunotherapy (namely, with or without chemo, and if with chemo, what type of chemo?) and, well, she got three different answers. One said just take the Herceptin/Perjeta alone, one said take it starting with capecitabine, the oral chemo I mentioned in my last post, and one said take it with a third type of chemo that's on their menu that I haven't received yet. So she doesn't really know what to do, hence the whole why it's bad for this situation to be rare thing. 

But, the fact of the matter is that I need to start the immunotherapy right away, and I still have to do 25 sessions of radiation between mid-November and mid-December, during which they definitely do not ALSO want to pile on chemo. So she just called, and after clearing ye ol' ticker*** via an echocardiogram that I had today, the new plan is to start the Herceptin/Perjeta regimen first thing next week, do all my damn radiation treatments****, and then decide whether or not to throw some light chemo into the mix (and if so, which kind). She actually suggested we start the immunotherapy tomorrow, but it's sweet Grisha's birthday, so I asked her to delay through the weekend so I could enjoy the festivities and she said that was fine. 

I've got a lot of feelings that I'm frankly too exhausted to get into. Of course, the idea of being a cancer patient for another  year–18 months in total– is maddening. But I'm also strategizing ways to normalize this next phase. And for the time being, at least my hair is coming back in: 

I'm more excited than I look about that fact, I promise.

As for all this news, for now, we're just going to keep trying to take things a day at a time, starting with celebrating Grisha's 36th trip around the sun with some gatherings this weekend, including the annual carrot cake I make for him.  I'll close on this though- as breast cancer awareness month comes to an end, remember that cancer "journeys" are so seldom linear or sensical or surefire or triumphant. They are, instead, often wrought with caveats and detours and prolonged periods of uncertainty. I'm trying hard to learn to be more adaptable and to be better about being forced to dwell in these gray areas. In the words of Woods- ain't it hard to say, it ain't easy. But hey, the Nats won their first World Series, and that's just fucking awesome. 

*See the Breast Cancer Awareness Post for further info on what this all means. 

** "Not so bad" in cancer language = some people have TERRIBLE diarrhea from it. Fun fun fun!

***They have to monitor my heart because an apparent side effect of this immunotherapy is heart problems... fun! 

****We did the "mapping" for my radiation treatments today, which sounds cool, but actually involved a very uncomfortable half hour where I was forced to lay very still on a plastic table with my (still very not nimble) arms positioned above my head. OY!