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The Knowing and the Coming to Terms With

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I’ve been sitting with some news for a few weeks, and I’m ready to share it with you.

Starting next Thursday, I will be undergoing IV chemotherapy at UPenn to try to shrink the tumor in my chest. Infusions will be once a month for anywhere from 6-13 months. This specific chemo is called Doxil, and its nickname is the Red Devil.

I think I knew somewhere, deep down in my heart, that I would end up here. When the medication I tried for nine months, hailed by those in the medical community as a Top Oncology Breakthrough of 2018, failed to shrink this thing or halt its growth, I had my suspicions that I’d need to treat this aggressive tumor aggressively.

The knowing doesn’t make it any easier. The knowing and the coming to terms with are two completely different things.

Over the past month, I’ve done my research and explored the shortlist of options I was left with after my last scan. I requested a consultation regarding cryoablation, a specialized surgery in which my tumor cells would be frozen and hypothetically, my tumor would begin to die. The specialist told me pretty immediately that I was not a candidate: given its size and location, there was a good chance they would paralyze my arm in the process of treating the tumor. I got a second opinion at Johns Hopkins, where the oncologist confirmed the course of treatment my doctor recommended. I considered HIFU, which is only done at Stanford University and would require consultation, massive travel expenses, and temporarily uprooting my life (not to mention a family member). I ultimately determined I did not want to go down that road unless I absolutely needed to do so.

My alternative to all of the above was to wait and watch. It’s the one I struggled with most. On one hand, I desperately long to go back to my normal life. I’ve been enjoying living treatment-free and all the seemingly mundane perks that go along with it: going to classes at the gym, being in a show, eating whatever I feel like without nausea, having enough energy to stay up until 10 PM. But behind all of these gifts, I would be living with a “somewhat stable” tumor with the potential to do irrevocable damage. My pain has already increased. The measurements have only gotten larger with each scan. I can’t watch this tumor continue its slow, destructive march.

In the end, I decided that it serves me far better to put in the time for more aggressive treatment now, as a young, healthy, single twenty-nine year old, rather than potentially face the same conclusion when I’m older and life is somehow, mind-blowingly enough, even more complicated.

There are lots of things I have to say about the last few weeks. I want to tell you why it’s sometimes hard to be called brave, how the show I performed in became my blissful escape from reality, and what it was like to share the news with my students. I share because it helps me process this experience and gain perspective on what this whole mess could mean. But there’s another reason, the one that led me to create this public blog rather than keep a personal journal. In the last few weeks, I’ve been blind-sided by things I wish I had known about earlier. I cobbled together advice from professionals and put one foot in front of the other, hoping for the best. I want to share because I found so few resources that I really needed. If putting these experiences out there into the world can help even just one person, it might, somehow, in some small way, be worth my own heartache. I could begin to alchemize this pain and these challenges into something concrete, meaningful, helpful, or even beautiful for someone else.

For now, I’m squeezing as much as possible in the space I have between myself and treatment. I’m seeing two Broadway shows this week, because why not? I have a list of errands to run and people to see. I will have plenty of time while I’m on disability to tell you more. (Trust me, I’m on day two of my regularly scheduled Spring Break, and I’m already a bit bored.)

Please know in the meantime that I’m okay. This has been unimaginably hard. But as I repeat to myself daily, and put on the letterboard in my kitchen a few weeks ago more with the intention of convincing than reminding: “You can do hard things.” It doesn’t always feel true. But I’m proving to myself with each step that it’s at least possible.