March 30, 2017: Infusion

It is an insane, Twilight-zone worthy thing to be put into a situation where you find yourself hoping that doctors detect a deadly and dangerous brain cancer in your head. But that is exactly where Matt and I found ourselves one year ago today: confused, upset, stressed, excited, hopeful, fearful. All of it.

The infusion of the polio virus into Matt’s tumor was supposed to start at 9 a.m. sharp. Then 9 a.m. turned into 10, which rolled into 11. No doctor. No infusion. No word from anyone who knew anything.

The trial protocol required that the presence of GBM be confirmed, via biopsy, before the virus could be infused. In one or two cases, the patient had reached the point of infusion and it turned out that the spot on the MRI was something called radiation necrosis, which is simply a side effect of radiation.

For us, if the spot on the MRI was not GBM, then the stress and the prep of the last two weeks had been for nothing; we’d be sent back home to continue waiting for that inevitable recurrence. But hooray, if we were sent home then that meant his cancer hadn’t returned so soon, and why wouldn’t that make us happy? What kind of crazy person is even a little disappointed that the doctors did not find GBM?

Of course we would have been happy to pack it up, go home to our kids, and return to praying for a recurrence-free life. But that’s happy with an asterisk. Because for the last month, we’d believed his cancer had come back. We’d worried that it would grow too fast. We’d scrambled to pick a treatment, get the initial lab work done, fill in paperwork, all while convincing ourselves that this was it. After this, Matt would be cured and we wouldn’t have to go through this exhausting process again. And there’s something in that: in the idea of knowing you are cured, that you are living your life without the shadow of cancer hanging over you that had captured us.

We wanted the doctors to find GBM now, so we’d be safe later. In retrospect, maybe we should have been more realistic and taken whatever time without a recurrence. Enjoyed the present, I guess.

By noon, 1, 2, we began emailing the lead neuro-oncologist asking for information. A short time later, she arrived in Matt’s room to tell us personally that GBM was confirmed. We all, the nurses and doctors included, breathed a sigh of relief. We were cleared to go.

Now, I have no medical degree. I know nothing about GBM except for what Google and experience have taught me. But at the time, I thought, and I said to Matt who agreed, that this was great news. If it took this long to confirm GBM, there must be only be a few GBM cells in there. Polio would make quick work of those few cells and we’d be on our way to happily ever after. Given how Matt’s story played out, I suspect my cute little theory was wrong.

The clinical trial nurse arrived with the polio virus and hooked it up to the catheter. Over 6.5 hours the virus dripped straight into the tumor.

We always aimed so high. Even months later, when Matt’s health devolved daily and the doctors told me we weren’t playing for a cure anymore and hope was replaced by delusion, we never set our sights lower than a cure.

All smiles while waiting for the infusion. The picture below is Matt’s text to his brother-in-law trying to explain how weird it is to hope for bad news.

 

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