The Waiting Game

Welcome to what is developing into my most morbid blog series yet: The Lymphoma Journey.

And boy, it’s been a wild one.

Last week, my symptoms got progressively worse, i.e., the pain on the right side of my chest, shoulder, arm, and neck. Plus, my particularly swollen face freaked me out. (Interesting to note that my symptoms only got worse after learning that it was lymphoma—I’m convinced that the This American Life podcast about the life-saving benefits myth of Chinese people withholding diagnoses from their family to protect them has truth).

I am so thankful for my mom being so proactive in faxing my medical records to Johns Hopkins, because a doctor immediately called after receiving them to ask me to come in as an emergency admittance. Within hours, I was put on one of the steroid pills for chemotherapy, because, as I later found out, the symptoms left untreated from the tumor blocking my SVC (major vein) could have killed me. #casual

And so I stayed the night in the hospital, getting more blood work, another CT scan, and met many nurses and doctors. My uncle made a surprise visit, which made it very difficult to keep in the emotions. He had wanted me to cancel my trip to Taiwan and the Philippines over the break, having been so concerned from the beginning about my then-unexplained chest pain that even his concern had made me cry.

So my weekend was indeed a wild 24 hours, having to come to terms that I will need chemotherapy for about 18 weeks to treat what likely is stage two primary mediastinal b-cell lymphoma. But what has been most frustrating is the waiting game.

This past month has been non-stop doctor’s visits, tests, and more tests—in Columbia, Johns Hopkins, and Georgetown. I can’t count the number of times I’ve been poked for blood and IV, and definitely not how many times I’ve put my finger into the pulse oximeter. (Up until this weekend, I hadn’t experienced the sheer, sweaty agony of having an inexperienced nurse spend an hour trying to poke a needle into you. She failed and had to get a vein finder machine to try the nightmare again on me.) But that’s nothing compared to waiting for each and every test, because at this point, I just want the chemo ASAP.

In addition to the CT scan, EKG, and blood work I’ve gotten these past few days, I got an echocardiogram today and will be getting what I hope is my final test before starting chemo—the PET scan. This will determine whether the cancer has spread.

Georgetown has a chemotherapy class on Saturday afternoons, so I’ll try to go to my first this week, not even knowing when I will get my first of six treatments.

In the midst of driving to and from hospitals, I’ve had to make sure my medical leave is being processed, my apartment lease can be terminated with a deposit refund, my internship can still deal with my lack of a stable schedule, my now uncertain role as associate editor of the Georgetown Journal of Asian Affairs, my State Department security clearance interview for my summer internship in Taiwan, my Boren Fellowship application for the next academic year—needless to say, a lot has been on my plate, and I am at least glad for not having to worry about classes on top of trying to maintain some sense of normalcy and future preparations.

I am preparing mentally for the worst that I know of so far, including nausea, vomiting, and hair loss. One upside is that maybe I soon won’t have to wake up to a swollen face. Another beacon of light came when my parents and I were seated in the waiting room at the Georgetown cancer center, where we saw the coolest, thin middle-aged woman strut in wearing a black jacket and black pants—and with a completely bald head. She oozed strength, and that’s what I aspire to maintain.

By this time next week, I better have received my first chemotherapy, which is supposed to take six hours. I am just tired of waiting, especially when we all know what I need.

And that is for me to fight the shit out of this tumor.