By Mooni Khalifah
On January 30th, I was told that I am officially cancer free. The struggle and pain of the chemotherapy and its side effects: the constant drilling pains of a headache, the never ending waves of nausea that came at any time of day, the horrible feeling of a body pumped full of unsuccessful pain meds, laying there just waiting for something to kick in. all of that is finally over. I always imagined myself jumping in the air, excited or screaming out in joy, if I ever came across this news. In reality, none of that happened. As the doctors words spilled out from her mouth, I felt a sense of calm and relief fall all over me. It was like a thousand pounds had been lifted from my shoulders. But at the same time, the daunting gloom of the uncertain future was keeping me restrained from enjoying my victory too much.
Today is Wednesday, February 12. The day that I have been waiting for all my life. It's the day that I've always wished to have and the date I feared I would never live to. Today is the day to discuss transplants. Officially!
It is 9:40 AM right now and my appointment with the NIH is right around the corner, but still a few hours away. I'm feeling excited, yet nervous and kind of scared at the same time. I always described my transplant as this moving target that always slipped away from me every time i got close to it, since its been delayed a few times in the past and i'm afraid that it will happen again. I'm scared that I will go into this appointment and have them tell me that they decided to delay the transplant for whatever reason. I'm scared that if I go to this appointment with my hopes high, that I will be let down and crushed by not getting what i've always wished for. But just like any fear, I have to face it and see what comes from it.
The process of transplant is pretty simple, and at the same time,very sensitive. Essentially everyone has an immune system, but because of DOCK8 mine is “compromised” and not as strong as everyone else, so I'm prone to getting sick a lot.
The first thing the doctors want to do is give a heavy dose of chemotherapy and radiation. This period of wiping out the immune systems and its cells can last between 1-2 weeks.
After that, a donor bone marrow is filtered and given to the patient. The day that the patients get the new bone marrow infusion is called “DAY ZERO.” It marks the start of the new cell transplantation. The patient has to stay in a 30 day quarantine in the hospital as they wait for the new cells to start growing.The next 60 days are spent out of quarantine but under strong moniterization. Then the patient is free to leave the hospital but must follow up with your doctors frequently and regularly over a 2 year period to ensure that everything is going in the right direction.
It is 6:46 pm, February 12th. I have just come back from the NIH, with mixed emotions and with both good and bad news. Thankfully we have officially set up a “day zero” to be March 6, but I will be admitted a week before on the 28th of February. I have 2 weeks of work up tests and scans before I am admitted. For example: MRI/ CT scans, and I have to visit almost every type of doctor you can think of. The sad part is, the next two weeks will be the last of my junior year. Under doctors orders, I have to stay away from densely populated areas such as schools and crowded malls 6 months after transplant. After receiving wonderful news of my transplant, I am no longer scared by the fears of not getting a transplant date. Instead I am met with a new fear, a new scare. The fear of isolation.
I have never been an extremely social person nor have I been an introvert, I kind of just landed in the middle. However when first coming to B-CC, I made a promise to myself that this year i would try to become an extreme extrovert, to step out of my comfort zone and meet new people at all times. This decision might as well be one of the smartest things I ever done. I realized that so many good things because of it., such as joining the newspaper or making a bunch of close friends. The thought of having to go from being very social to being completely isolated frightens me, it feels intimidating and scary. However every victory requires sacrifice and I know my friends, peers, and family are always supporting me. So in a way, I am never really alone.