Being Left Behind

It’s been a crazy few weeks. I started an internship at Memorial Sloan-Kettering on June 5. I also took my finals in New York during the first two weeks of working (s/o to the quarter system) and flew back for a weekend for graduation and a family event. In the last couple of weeks I have finally been able to settle into New York and I really like it here.

There is something interesting about being in a new place after this diagnosis. While it’s not a secret that I had cancer, these people don’t know me in the context of going through treatment. It’s a relief to be treated more normally. For the first time in a long time, the people around me are not acting like I’m fragile. This has brought out a new set of challenges, because the reality is that I am still fragile. I have been having a really hard time managing my GVHD lately. While it is somewhat controlled, I have not had a complete response to steroids and my eyes, skin, and mouth are still very irritated. For context, here is a picture of my hand and feet:IMG_0923.JPG img_08031.jpg

The GVHD is the worst on my hands and feet, which is unfortunate because this makes functioning pretty difficult. My eyes are significantly improved since getting my tear ducts plugged, but they are still irritated and light sensitive.

While I am keeping my care primarily at CHO, I have seen some doctors at MSKCC while I’m in New York. We are going to try some new things, including light therapy for my skin and some topical steroids. We are talking about an additional systemic immune suppressant, but it’s so hard to weigh against increasing my risk of infection.

I watched my class graduate from Stanford on June 18. It was two years to the day from my AML diagnosis. I didn’t expect to be so emotional, but standing in the stadium watching my class receive their degrees was really painful.

It’s almost like I’m processing all of this for the first time. For a long time I really tried to block out the worst of my feelings about getting cancer (remember the Zen space?). I’m sad that this happened to me, and I’m angry that I’m still suffering so much. I also have a lot of good in my life – being able to spend a summer away just two years after diagnosis is shocking. I’m turning 22 in November. 22 is not a number I ever imagined for myself. Making it to 21 seemed far-fetched for a long time.

I’ll end with some pictures of me having fun this summer (it’s not all bad, I promise).

4 thoughts on “Being Left Behind

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  1. You are an amazing, vibrant soul. I too am angry and sorry you have to go through all this. But you are doing it with inimitable strength, grace, and dignity. I’m glad you are getting settled in New York. I pray for the optimum outcomes to optimum treatment decisions.


  2. Rooftop bars are truly one of life’s great delights.
    So happy that you’re in New York, so sorry that all of life cannot be as beautiful as rooftop bars.


  3. Wow girl! 22?! Remember when we joked about sneaking in alcohol for your 21st? I know this must be a very emotional time and I’m sure you’ve had to work through so many different feelings this time of year. I think about you often and am sending you love!


  4. Bay has GvHD of the mouth/finger nails/toe nails. While it’s not causing too much irritation or pain it’s just a reminder of what he wants to forget. Kids make him feel badly about how they look but he’s learned to turn the other cheek and think of them as jerks. I can only imagine how it must feel to be in a place that doesn’t know your story/journey – enjoy it! Enjoy your youth and all New York has to offer!!! xo


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