As soon as the doctors came back into the room from looking at the just-completed CT images, I knew the news was not bad. I didn’t know exactly how not-bad it was, but I could tell just from the way they walked into the room that the worst had not come to pass. The expressions on their faces simply confirmed it.
And then their words: the primary tumor’s size is essentially unchanged since the MRI that was done three weeks ago. There are no obvious solid tumors arising from the flare sites.
This is huge. The rate of growth previous to starting the p28 study was frighteningly rapid. If unchecked, it should have been at least a third bigger, maybe half again as big, maybe even twice as big, by now. Instead, it’s basically the same size. The flare sites have not produced tumors of any notable size, and may have produced none at all.
I can’t say if the primary tumor is exactly the same size, or a little bigger, or what, because today’s image was a CT scan (done in the Pirate Island imaging room, by the way). As such, it can’t be directly compared to the last MRI. We won’t get a more precise estimate until another MRI is done, and even then it won’t be ultra-precise. Medical imaging can only get you so far, precision-wise.
The tumor isn’t being eliminated, because that’s not how this treatment works, but it is being held in check. The p28 is buying us time — enough time, we can hope, to find a way to shrink or possibly even eliminate the tumor. That’s where our energies will be directed in the next few weeks and months.
So after all my angst and worry about making a blind choice, there was no opportunity to make it. In a sense, we had no choice, though of course we always had the option to refuse. Given the situation, though, we ended up imaging earlier, and differently, than expected, for unexpected reasons.
The reasons were that, starting Friday afternoon, Rebecca became very tired, almost to the point of listlessness between daytime naps. She hasn’t napped in years, and suddenly she was sleeping twice a day, going to bed early, waking up late, and still having low energy. There were periods where she’d rally and be her usual self, but they got shorter and less frequent. Yesterday, there really wasn’t a time where she had her usual energy levels.
Our instincts basically got whipsawed into pulp. There were a few times over the weekend where I nearly tweeted that she was dying, because that’s how it felt to both me and Kat. Then she’d rally, and we’d think that maybe it was just a virus. And then she’d slide into a torpor that felt so much like the days before her seizure last August.
The thing was, it was only fatigue and lethargy. There wasn’t vomiting, as we would expect with intracranial pressure, nor complaints of headaches.
Then, last night, there was an incident that seemed like a very small seizure. We talked with the on-call nurses both here and in Pittsburgh, and both agreed that we should get her to Pittsburgh for her p28 infusion and further evaluation with the study doctors.
Kat and I were pretty well convinced that the CT would show a much larger tumor, not driving up pressure so much as disrupting the normal brain tissue and slowly killing her. We were braced for the news that the drug wasn’t working and that she was out of the study.
As we waited for the CT machine to spin up, Kat broke from our embrace to look me in the eye. She asked, “Are you ready for the results from this?”
“No, of course not,” I said. “But whatever they are, we’ll deal with them.”
Less than an hour later, we were asking the doctors to repeat their findings. No change. Our intertwined fingers contracted, squeezing as one, disbelief translated into white-knuckle pressure. We turned inward, fell into each other’s arms, and wept tears of relief and a kind of joy. For the first time in months, our tears came from something other than fear and sorrow and pain.
Tonight, Rebecca is in yet another hospital bed, this time at the Cleveland Clinic. She’s still deeply tired all the time, and if the tumor isn’t exerting pressure, then there has to be another cause. We might have waited it out to see if it’s viral, but there are enough other signs — the incident last night, some subtle physical changes, behaviors that might not be behavioral — to tell us that she’s probably having micro-seizures, and having them pretty often. The tumor would be the most likely culprit here, considering where it’s located.
So tonight a technician is gluing a couple dozen electrical leads to her scalp so the EEG monitor can tell us if we need to add an anti-seizure medication to her daily routine. In one way, I hope that it does, because that would be a known, fairly easily-addressed problem. We’ve done anti-seizure medication in the past, and have a good idea of what works for her.
Of course we don’t want her to be suffering seizures of any kind — she’s suffered enough as it is — but as Kat observed, we’ll take a seizure disorder over an unchecked brain tumor any day.
We’re not out of the woods yet. Even if the p28 is preventing the tumor from growing, which is all we can realistically expect it to do, the tumor is still there. We have to find a way to deal with it, because we can’t expect the p28 to be effective forever. But if this initial effect holds up, we might have several months, possibly even a year or two, in which to search for a stronger, more permanent treatment. We’re checking into a number of clinical trials, some you’ve heard about in the news and others that were unknown even to our neuro-oncology doctors. (That’s not a knock on the doctors; there are a lot of studies happening at any one time, and always more being launched.) We’ll use the time the p28 is giving us as best we can.
A long day, and a very emotional day, but a good day, one of the best in a long time. Any day you end with more hope than you started with is a day worth celebrating.