We have been in a holding pattern. We still have three masses. They have been about the same size for the past few months. The most recent tension has been with one of the masses that had bucked the general trend and was hinting at getting larger. That spectre of recurrence has been on our minds a lot.
Today, Ursula has been in New York, getting her regular six week scan and dose of Anti-PD1, and got some great news. The masses are shrinking again. Or, more accurately, it is clear that the trend is that they are still shrinking. In fact, they are all still shrinking. Even the one that looked like it was growing got smaller. We don’t have all of the metrics, but the overall report is clear that the trend is for slow reduction in volume as the treatment has continued. It also sounds as though there was a small error in reading the scans that made it seem like one of the masses was growing.
It is a clear reminder of where we are and how much we scrutinize, ruminate about, and otherwise get caught up in the tea leaves that are the small details of reportage. And as we do, we are misled by some of the minutiae that is offered. The doctors seem to have perspective on this; they seem to know that small picture is too easy to get caught up in and that they are taken aback when we come with questions about the possible worst case scenarios that we dream up. In spite of the worry, we seem to be enjoying the best of responses still.
Lest you think that the masses trending smaller could be a mirage as well, there was more encouraging news. The reduction of volume has passed a threshold in the study where Ursula is now classified as a “strong responder” which means they are going to reduce the number of scans needed from every six weeks to every twelve. It means we will get more anxious in between scans, but the reason why is paradoxically reassuring.
On a completely different note, I had someone talk to me recently about the blog and the impact that it had on her. She shared a story that is humbling and hopeful about the loss of a parent when she was young, and how reading about our decisions with the kids and what we share with them was healing to read.
As I sit typing this, all of the boys know what is going on. Our youngest, who is 3 and a few months, can tell me that mommy is in New York right now. And that she is getting medicine because she is sick. And that she will come home tomorrow. Our oldest, is asking about the scan results and wants to know how good or bad it is. Our whole routine changes when mom is away, and yet we have done it so often over the year, that it is utterly normal. There isn’t anxiety from them, it is woven into what we do with our lives. I can’t tell you when we crossed the threshold into regular, everyday cancer travel and treatment, but we are clearly there. This is possible because the treatment is working and we aren’t grappling with end of life issues today, but it is also possible because we talk about it all time. I can’t tell you if we are doing it right, but it feels good not to be keeping secrets and talking around it.
We continue to enjoy warm thoughts and wishes from everyone, and we are continually showered by small gifts left at our door, colleagues giving warm thoughts through cards and books, and support from everyone in general. We will update as often as we have news to share, and will continue to enjoy this especially warm autumn.