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

Frozen In Time

Most people know a lot of the ways cancer can interrupt someone's life. As a child, it makes going to school and making friends extremely difficult. As a parent, it makes raising children and working almost impossible depending on the severity of the cancer. As an elderly person, it can sometimes send your retirement savings out the door and survival rates decrease with age. But the one thing that people don't really seem to get is you feel like your life has completely stopped. Everything you planned to do is either on hold or forgotten. You miss out on the opportunities that healthy people take for granted. And for someone who is 23 years old, the time when everyone says is the prime of your life, it's very hard to cope with.

I find that every time I reconnect or hang out with someone I feel so happy to see them and get all excited with the things going on in their life. Whether it's because they are graduating college, getting married, starting on their dream careers...and then they ask me 'what's new?' and then this little seed of jealousy begins to form. I begin to remember that I'm not working, not finishing school, don't really have a social life let alone a dating life...I feel almost like a failure because I haven't truly accomplished what I wanted to do in my life. My head just screams IT'S NOT FAIR. 

All these things I was hoping to do, I can't because of this mutation in my body. I kind of wish cancer was a mutation where you get super awesome skills like the X-men movies make it out to be. Then I wouldn't be complaining and would probably sign up to work for some cool secret mission.

A friend of mine once sent me a post about this feeling of isolation. It said cancer is like a kidnapping. It takes you away from the comfort and joys of life. It forces you to do things no person should have to endure. It messes with you psychologically and sticks with you for the rest of your life. It's true! Cancer is a kidnapping! 

And during that kidnapping it feels like you are stuck in a glass room forced to watch everyone else move on with their lives. The people outside of that room don't really know how to react. Some of them will stay close by...some will ask "what can I do to get you out?" (when we all know there isn't anything to be done except treatment)....and then there are the many who will wave and walk on by.

The ones who stick around are the ones who will be there for you when the glass walls come down and remission begins. The ones who say "what can I do?" are the ones who will stay in touch and be that extra wave of support. And the ones who walk by....well I've learned, they are the ones who come and go in our lives. You can't truly blame them because they have their own lives to lead....but this is where that seed of jealousy begins. It's human error to have jealousy...I for one am truly guilty of it. I experience it all too often when I'm on social media and see the amazing experiences my friends have. I know it's wrong and I know people have their own demons and struggles. It's just something I will have to overcome.

So while my life is frozen in time...what can I do? Well, I decided to make a bucket list. Bucket lists don't have to be for the terminally ill. They are a great way of brainstorming the things you want to do with your life and also to think of goals you can achieve in the meantime. For example, the top of my list of things to do is to go visit Harry Potter World in Florida....I know...I'm such a dork. 

But the next thing on my list is to watch the AFI Top 100 movie list. Last year I managed to get through half, and I still have many more to look forward to enjoying. Then I follow that with a big dream like meet celebrity like Ellen Degeneres or travel to Scotland....followed by composing a piece of music or reading all of Jane Austen's novels. I alternate between the big dreams and the currently doable dreams. There are quite a few things on my list, but it's a motivation and it truly makes the days have purpose. It's the little things that truly make life worth living and it's the little things that get us through the rough spots.