I suppose I’m way overdue for this post. But whole brain radiation shakes your brain’s ability to think and process clearly, so I didn’t bother writing while the side effects were still looming large. I’m still a little fuzzy, so this may be a short and less than well written post. Bear with me.
That’s right! I got brain tumors, as most people who know me already know. First of all, this is breast cancer in my brain, not brain cancer. About a dozen small spots, the largest at 1cm. Nothing in places that are too serious. We found them because I was getting headaches that turned out not to be connected (sound familiar?) and they showed up on the subsequent MRI.
Brain tumors sound scary, but they’re not. (Okay, they are.) They don’t change my prognosis, largely because liver tumors are technically more deadly. However, brain tumors are harder to treat because of the blood brain barrier, which prevents large molecule chemos and neoadjuvants (like taxol, herceptin, and pertuzumab) from entering the brain. At the same time, once you have cancer in the brain, there’s a good chance that your BBB is disrupted enough that other things can start to cross too. And there’s been some indication that being on herceptin for a period of time before, or during, and after the discovery of brain tumors can help other kinds of treatment. So it’s a mixed bag.
HER-2+ breast cancer brain tumors also behave much differently than other brain tumors. When other kinds of breast cancer, or lung cancer, metastasizes to the brain, it’s usually fatal within 6 months because it doesn’t respond to most treatment. But once again, I’m lucky — HER-2+ brain tumors respond to treatment — like whole brain radiation, focal radiation (gamma knife surgery), and chemos that are smaller molecule and do cross the BBB — very, very well. Most women see stabilization after WBR for a year or more, for instance, and many live with brain tumors for more than 5 years.
But seriously — my brain??? I asked my oncologist, when I first saw her after the diagnosis, “So, is there anywhere else breast cancer tends to go I have to worry about now, or have we covered all the major bases?” She responded, “Well, it can go anywhere, but the only other closed circuit system that’s difficult to treat is the testicles, and you don’t have those, so I don’t’ think we have to worry about that.” So there is a silver lining.
In the first few days after finding my brain tumors, I felt like I was oscillating between absurdity and panic. I think Kate said it best the morning we first went into the hospital to meet with the radiation oncology team and begin WBR. “Well, it’s ten in the morning and I’ve already cried over a toilet and looked at a scan of the tumors on my best friend’s brain. TGIF!” The night before, Kate, Will, Kai, and I sat in her apartment and the four of us figured out laughing was better than crying and steered our night in that direction. Brain tumors. The persistent little fucker.
We won’t know how well the WBR worked until late January, as you have to wait almost 2 months after radiation for your brain swelling to go down and the scans to come back clear enough to read. We’re guessing they worked well. They should have worked well.
The other side of this coin is that my body scans in early December were totally clean — still no evidence of disease. This is excellent news for two reasons. First, it means the herceptin and pertuzumab are working without chemo, which gestures toward more time off heavy treatment; second, it means that, if we can get the brain tumors under control now, there will be very little chance of more cancer getting into my brain or new tumors developing because there will be no cancer in my body to move into my brain. So I’ve got that going for me.
Nonetheless, my brain is my control center and having it under attack is weird. For the first time since I was diagnosed, one night I found myself saying: “Why is my body trying to kill me?” It may not change my diagnosis but it feels different — feels like more of a crucial assault than the other organ metastasis. My brain is me — more than my lungs, or liver, or bones — and so it’s tempting to wonder how I, or this part of me, let this happen. What gate did my brain leave open for the cancer to come waltzing through? Where are my brain’s guardians who are supposed to make sure no intruders enter the battlefield? “Blood brain barrier,” I want to shout, “you have ONE JOB. Seriously??”
But that’s not how it works, and I know it. Just like cancer isn’t clever and isn’t looking for new places to go, laughing maniacally as it plants seeds of destruction across my body, my body isn’t clever either. They both act and react as the biological organisms they are, with the primary (and really, sole) aim of staying alive.
I guess it’s just a race to the finish then. Who can stay alive the longest. At least we’re helping the right side.