January 11, 2018: Along The Edges

January 11, 2018 marked our fourth full day of waiting for a bed to become available at Columbia. However, instead of making contingency plans and preparing to rush into the city at a moment’s notice, we (I) had to consider whether we wanted that bed and that admission, which, by this point in the week, would surely mean a weekend hospitalization. Once again, the subtext of our (my) conversations became quality of life.

That weekend, Matt and I had plans with his parents and sisters to celebrate his mother’s birthday. We were planning to leave G and H in my mom’s care and spend the weekend in a fun New York City hotel, enjoying a show (Dear Evan Hansen), a dinner (at the Nomad), and a leisurely Sunday morning breakfast/brunch. We had plans for normal, for a weekend away from kids, but more importantly, a weekend away from doctors and hospitals.

If a bed became available and we took it, Matt would miss all of that.

But if we didn’t take the bed…I didn’t know what might happen, but I’d seen enough to fuel more than a dozen possible nightmare scenarios. That very morning, Matt had lost his balance and tipped over, slamming his shoulder into a wall. He didn’t go down, and he didn’t get hurt, but it was obvious evidence of his deteriorating physical and mental state.

Without ever using the words quality of life, which was a phrase that felt like an admission I simply couldn’t make, I asked the nurse her opinion. I wanted the nurse to weigh the pros and cons of delaying admission because I didn’t want to be the reason Matt missed his mom’s birthday, but I also couldn’t be the reason Matt’s treatment was delayed by even an hour. I wanted the nurse to make this decision for me. She didn’t. Because there was no right decision, nor was there a wrong decision. We were permanently in a gray area, a space where there were no absolutes and no guarantees, where nightmares lurked in shadows, and hope flickered with something like desperation along the edges.

Instead, the nurse told me the doctor would call me soon with the tumor board’s findings. At about 5:30, the doctor called. She confirmed that a bed was not yet available and would not be available overnight. When I asked her about delaying admission, while noting the changes I’d seen in Matt, she determined that Matt should not miss his mother’s birthday and delaying admission until Sunday or Monday would be inconsequential.

The doctor then discussed with me the tumor board’s conclusions. After reviewing Matt’s record and MRI, the tumor board decided that he was not a candidate for surgery—removing the tumor in the left parietal lobe was not a possibility—and neither was he a candidate for Avastin. The neurosurgeon instead added a new option to our rapidly dwindling list of options: laser ablation. Until January 11, 2018, I’d never heard the term laser ablation, and by then, I’d believed I knew all the relevant procedures and vocabulary words.

I don’t remember how we left the conversation. Maybe we (the doctor and I) decided to simply put the conversation on hold until after the weekend. Maybe she told us to try and enjoy ourselves. Maybe I sat beside Matt and held his hand and tried once again to reach for one of those glimmers of hope in the darkness.

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