August 17, 2017: Six Weeks Lost

A lot happened in yesterday’s post. Mistakes and disappointments and that anger ruled the story. But all the work, all the difficult decisions, still waited for us.

When we arrived home on August 16, 2017, Matt went upstairs to nap. I took out my computer and wrote what I described as a “sternly worded email” to Duke. I listed out Matt’s most obvious symptoms so there would be no confusion as to what exactly we were seeing at home. I reminded them that we didn’t have the luxury of time at this point—Matt was due for either his next Avastin and/or next CCNU within a week.

Duke responded within a few hours of confirming they’d received the MRI. Columbia also responded within a few hours of receiving the July MRI. On August 17, 2017, we were again confronted by two doctors, looking at the same images, and seeing two different truths. (At this point, we’d stopped conferring with Hackensack. We understood they did not agree with Matt’s treatment plan and did not want to be involved with our chosen path.)

Duke reviewed the MRI and told us that the tumor treated with poliovirus (in the left parietal lobe) was responding to the poliovirus and breaking apart, but the tumor in the right parietal lobe, had grown. Duke recommended gamma knife radiation* on that right parietal lobe tumor.

Columbia looked at the same images and told us both active tumors in the parietal lobes looked bigger. The doctor at Columbia suggested surgery to remove one of the tumors and then gamma knife radiation on the other.

Matt and I were again faced with a choice of who to believe and what to do.

Two things were certain. One, we’d lost six precious weeks of treatment time on CCNU, a drug Hackensack had warned likely wouldn’t work on Matt. (Remember, his tumor was unmethylated and hadn’t responded to the Temodar.) And, two, whatever we chose to do next would not be easy, on Matt or the kids or anyone.

August 17, 2017 was the last day of camp for G and H. I took them to the lake to play with their friends. As I watched them running around, carefree and full of potential, I fought back tears. Matt would be fine. The poliovirus would work. Of that I had to be sure. But I was also sure that the road ahead of us was not going to be smooth or straight. Whatever decision we made would mean more appointments, more tests, more recovery and more side effects (mental, physical, emotional) for Matt. I knew whatever road we chose meant somehow finding a balance between keeping things as normal as possible for G and H—letting them enjoy the end of their summer, prepare them for the school year—and doing whatever needed to be done to bring Matt back to himself. I felt my life cleaving into two separate halves—the life in which I was a stay-at-home mother with two kids who volunteered for the PTA and brought fun snacks to the soccer field and the life in which I was the wife of a brain cancer patient who was about to begin a fifth attempt to eradicate a brutal disease—and I hoped I’d be strong enough to live those two lives for all the people that counted on me.

We didn’t make a decision on August 17, 2017—there were a number of nuanced factors to consider and more specialists to confer with—, but I texted a friend and told her I knew we’d end up following through with Duke’s treatment plan. Duke believed poliovirus was working and we believed Duke knew something the other doctors didn’t. We believed Duke held the key to the cure.

Once again, that saying: At Duke, there is hope.

And that was always the deciding factor.

*Gamma knife radiation is targeted radiation therapy. I’ll go into more detail in the next few days.

IMG_1449

My sternly worded email. In hindsight, it’s not quite that stern.

5 thoughts on “August 17, 2017: Six Weeks Lost

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