You can't win 'em all! (But I didn't lose either...)

Hello friends,

I'm here trying to be better about passing on news when I get it instead of needing to have a whole essay worked out about my response to it. I saw the oncologist at Penn today to hear about the results of my scans from Friday and they are not as bad as I feared, but not as good as I hoped. I'd had a bad feeling about this one, which you certainly can chalk up to my general tendency to hope for the best but prepare for the worst (a trait that has a lot of downsides but which does, in a funny way, give me a fundamental confidence in my ability to cope), but which may also have to do with my subconsciously knowing things about my own body. But that's getting ahead of myself.

The results were positive in that, in all but one location, there was no change. The cancer did not move to any new locations and, in the metastatic sites, it all remained unchanged The only change was in the initial tumor in the breast, which had grown by 1 cm. Guess which part of this news I'm focused on?? Especially since, for a few hours, it wasn't clear to me or my doctors that I would be able to stay in the trial.

Let me say first that my team at Penn is amazing and they have done everything possible to get me information about my results as quickly as they can, as well as to work around my schedule to make visits easier, help me with my travel plans, etc. They gave me hugs of joy, when I had my first great news, and of relief, today when I did learn that I could keep taking the PARP inhibitors for at least another 6 weeks. I do very much feel that we're all in this together and I trust them implicitly. That's another reason why I'd hate to leave the study (aside from how few choices I have if I do). 

So, the situation was that they had seen my results and wanted to go into a meeting with me, where we were going to discuss them, knowing whether or not I was staying on the study (especially so that if I wasn't they could make sure I knew I had options). But the right person wasn't calling them back. So I was there and waiting and, when my usually prompt team didn't show up for 1.5 hours after the meeting time, I knew something was wrong. I felt it. They came in and told me that they'd take me through the results, but that we all had to wait in real time for the study coordinators to call back and let me know if that much more cancer was too much more cancer to keep taking the drug.

I've had a lot of people ask why it is that I have to leave the study if I "progress" (again, remember that for cancer "progress" is bad...it's the disease that is progressing and succeeding in its purpose, not you, who are trying to thwart it). The answer, I think, is that experimental design for cancer clinical trials protects patients by requiring them seek and assess other options if the disease is getting worse on the trial. They don't want any patients sticking around on it without knowing definitively that there is no better option. (It's also self-protective against lawsuits, I assume.) So the fact that they "kick me off" isn't because they are cruel, but because they want to make sure I'm not only free to choose another option but actively made to look into it.

The question my doctors and I (and the wonderful friend who was there with me) were waiting for an answer to was whether 1cm of tumor growth constituted enough progress to mean I had to leave. They decided it did not. It was a 12% increase and so much else had not changed that they determined I still had a "partial response" (that's a good thing) to the drug. So I get to try again for another 6 weeks before another set of scans and another decision point at which, perhaps, nothing will have changed or, perhaps, too much will have changed and I'll leave the study.

It's emotionally exhausting. I'm totally drained. I doubt I'll get rid of the mounting anxiety of these next 6 weeks either, particularly with the canary in the coal mine of this tumor (which is huge and easily visible just to the naked eye) to watch and prod and assess. I had thought it was getting worse. I was right. Did I know because I was so familiar with its size? Did I know because of intuition? Or some set of signals that my body was sending that I wasn't even aware of receiving or processing but did? I don't know. 

What I do know is that I have so far been uncannily accurate about what news to expect, excepting that fact that I was blindsided by being Stage 4. I felt as a fact that my tumor was cancerous from the point at which I called my doctor on. Every new set of MRIs and tests I expected to bring bad news and they did. I was sure the chemo wasn't working and, mostly, it wasn't. And yes, you could say that I was just expecting all the worst and then it turned out to be true. But I also knew with almost total certainty that the PARP inhibitors worked the first and second times...and that they hadn't worked this time. That's less predictable and, I don't think, entirely dependent on my mood. I suspect there are signals I'm sending, receiving, assessing, and internalizing from my body without ever knowing in any conscious way, a fact which fascinates me.

I need to head to bed since it's been a tiring day. But I was sure you'd want to know. Right now I'm not feeling great about the news, but perhaps when I process it more I'll see more of the good. Thank you for reading.

Love,
Rebecca