Sunday, November 5, 2017

Sick and Tired of Being Sick and Tired

I must apologize for the brief break I needed to take from my blog. After receiving the news last month about my transplant being postponed indefinitely (or until I get back into remission), I had trouble accepting the setback and needed to rekindle my flame of strength going forward. The first round of chemo since I came back from Europe was rough seeing as I wasn't mentally prepared for it. Not only was it mentally draining, but physically it made me very weak and for my first off-chemo week I became very sick with a nasty cold.

By the time I started feeling somewhat better, I went in for my second round of chemo. This round wasn't too bad...mainly because I celebrated my 25th birthday (which I wasn't originally planning on doing at home) and had the perfect distraction of decorating the house for Halloween...even though we hardly got any trick-or-treaters. The much-needed distraction started to pick up my spirits, and so I decided to call my oncologist to set up the "Take Two" PET-scan. However, the response was not what I was anticipating at all.

My oncologist started asking me the usual questions..."How are you feeling?"...."Have you noticed any new lumps?"...etc. I told him that everything was the same as usual and that nothing new had shown up. Besides the little hiccup of a cold and the usual fatigue, I felt ready to take on the PET scan and get the show on the road. Then after a brief pause on the phone, he said, "I think it would be best if we proceed with one more round of chemotherapy."

I wanted to throw the cell phone across the room. He explained that right now he's very optimistic about how I'm responding to the chemotherapy but that Johns Hopkins is very uncertain about moving forward, in fear that I am becoming immune to the treatment. He thinks that if I were to proceed with the PET scan now, it wouldn't be convincing enough to sway them otherwise. So he suggested that I do one more round (another 2 treatments of chemotherapy) and then set the PET scan for the 28th of November. 

Knowing and trusting my oncologist 100%, I agreed to proceed this way even at the risk of weakening my resolve. So instead of preparing for a scan this week, I'm stuck at home once again recovering from the fatigue plus the additional side effects from the flu shot I got at the same time as chemo this past Friday.

I hate feeling bored and useless. I hate this constant lingering around and waiting for a finish line that's only pushed back further and further away. I have no regrets, but the circumstances are not ideal. I'm incredibly grateful for the support system I have between family and friends, but I feel like I'm missing something. Once again I feel like I'm trapped inside a glass box watching my friends move forward to bigger and greater things...jobs, weddings, families, etc...and I'm just stuck. With the lack of energy, I'm not exactly able to go back to work. Going back to school would be very risky...practically impossible if I somehow go into transplant at the end of the year. So all I can do is wait.

If there's one thing I've definitely learned these last few days...it's that I'm sick and tired of being sick and tired. So I've decided to focus on the little victories of every day. I've been studying and perfecting my French. I've even resorted to taking free (non-credit) online courses provided by Yale to prepare for the day I (hopefully) do go back to finish school. I try to maintain my strength by doing small exercise routines every day. I'm trying to read more, and I'm catching up on missed movies and shows. Whenever I have the strength, I try to go out and do something productive...whether it's going grocery shopping or hanging out with a friend. They are small goals but I'll do whatever I can to pass the time. It's the only way to feel close to normal.

"Life doesn't discriminate between the sinners and the saints; it takes and it takes. And we keep living anyway; we rise and we fall and we break and we make our mistakes. And if there's a reason I'm still alive when so many have died then I'm willing to wait for it." 
                                                ---"Wait For It" by Lin-Manuel Miranda

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