The Endgame

Hi friends,
This is Emily’s husband, Christian, posting on her behalf. First, let me say that Emily really wanted to write this post herself. It’s possible she will get mad at me for taking the initiative to write it, and it brings me immense pain to do so, but at this point she unfortunately isn’t really capable of it. It has always been the spirit of her writing and her journey to give an accounting in real time, not a white-washed account after the fact, and so I hope to honor that by letting you all know what is going on, now, rather than later. So here it goes. (apologies for my far less beautiful writing style)

Last Monday, Emily was supposed to go in for her weekly blood work to see if she was going to be able to receive treatment that week (not likely, since she was coming off two consecutive weeks of carboplatin chemo, which has been harder on her than any previous treatment except maybe Taxol). We (her parents and I) had been noticing some balance issues and slurring of her speech, and had been worried about it all weekend. That morning, a friend from her support group called to say hi, and was sufficiently worried by how off she sounded that she called the social worker/group leader at the Cancer Center about it. Needless to say, the SW called her oncologist, and shortly after Emily got a call from her nurse practitioner, K. The call came when Emily and her mom were already en route to the local blood center, and the NP heard her speak and immediately told her to turn around and come downtown to the main hospital urgent care center. They came home, and I volunteered to take her, and did my fastest “oh shit you need to be on a flight to China in 4 hours” packing job to get her ready for a possible overnight stay in the hospital (but of course forgot to pack anything for myself except a phone charger and a toothbrush).

The drive into the city was tense. Her rapid decline in December had felt like an anomaly; abrupt and out of nowhere. This felt different. Like it had the inexorable weight of something that had been a long time coming.

We arrived at the hospital, in the relatively early days of COVID-19 lockdowns, to something out of a sci-fi movie. Doctors and nurses in full protective gear (oh, for those heady days of plentiful N95 masks!); multiple checkpoints where we were asked the same questions over and over again: “Have you traveled outside the country? Have you had a fever? Have you experienced any shortness of breath?” Of course, Emily, in her slightly compromised mental state, answered yes to the last one. Why, yes, she HAS been short of breath! I hurried to explain that it was only after exerting herself, after climbing the stairs, and that it had been going on for months…but the protocol had been triggered. We were shunted off to the side, to get yet MORE questionnaires asking the same questions, by at least 3 nurses, until finally we were interrogated by the doctors in full hazmat suits, to determine if she warranted COVID-19 testing (because this was two weeks ago, when our country did not yet HAVE test kits to spare).

She did not. We passed this test.

What followed was a whirlwind of tests, scans, and waiting around. Her bilirubin level was at 10, up from 3.5 a week earlier, when it should be below 1.5. This was the thing Dr. G had warned us of; that the bilirubin wouldn’t creep upward, it would suddenly spike, which marked the end game. Everything now hinged on the imaging of her liver, if they could find a blockage into which they could implant a stent, to drain the bilirubin.

They did not. We failed this test.

In the most gut wrenching moment of the hospital stay, we got a phone call from Dr. G, her primary oncologist from the very beginning. She was so sorry, but she couldn’t come in person to tell us (she was in the clinic, and we were in the hospital, and in the days of COVID-19, ne’er the twain shall meet), but there was nothing more they could do. There was no one or few blockages they could address surgically, more like a million tiny blockages. And with her liver function so low, any medical/chemical treatment they gave her would immediately poison her to death. Checkmate.

The last 2.5 years have often felt like a chess game. One played against an opponent who was smarter and faster than you, and could change the rules at will, but didn’t have to tell you of the rule changes until they had already taken several moves. Cancer cheats, and it isn’t fair. Some day, justice will come, as it does to all cheaters, and we will get the upper hand. We had thought, we had hoped, that Emily would live to see that day, that science would come through, that the breakthrough would come in time to save her.

It did not. Science failed her.

But it doesn’t have to fail the next person. We are on the cusp of so many great things, and if Emily has taught us anything, it is to push, to reach, to strive for more, for better. But it will take commitment, dedication, and resources. Emily spent the last 2.5 years of her life fighting not only for herself and her family, but for the thousands of others like her. She often said that she felt this was her life’s work; that everything in her life, since she was a little girl going to the library to look up medical textbook images of tumors, everything had been building to this time. I know the impact she has had in this community, from the hundreds of messages we have already received, from people just worried because her constant drumbeat of advocacy fell silent for only a week.

It will not stay silent. Her message and her mission will not fail.

In the coming months, I hope to introduce you to some of the initiatives and organizations for which Emily has planned and lain the groundwork. I can’t promise that they will all see the light of day; after all, we all know that she, the Leslie Knope of Mount Kisco, could accomplish more on her own than an entire battalion of workers could. But she has always been a firm believer in grassroots movements, and I hope to plant the seeds of her many visions in the months and years to come, and see what sprouts.

As I type this, she is resting fairly comfortably at home. I moved our big bed (with the mattress she picked out and adores) downstairs, so she doesn’t have to deal with the stairs. And I finally bought her the full body u-shaped pregnancy pillow that she has always wanted, which she is contentedly spooning. She is not really in any pain (and we have LOADS of drugs if she ever is), and both of our sets of parents and Felix are here to give her all the love and kisses she needs. This COVID-19 BS is pretty awful, because there are so many of you that I/we would want hugs and beers with right now, of all times, but alas, it is not to be. Soon. And until then, Zoom. But please know that we lack for little, material wise. Unfortunately, as I alluded to earlier, Emily is not in much position to read or respond to any messages (the ammonia buildup in her system due to her liver failure has made her pretty loopy and sleepy). But any comments you post here will certainly be read by me and transferred to her in love and kisses.

Love to you all,
Emily, Christian, and Felix