Holidays...did you mean Hospital?

Hello out there!!

Well it was time for the holidays. This would be a really exciting holiday for me because Thanksgiving would be the first time I would meet Dan's extended family (and get to eat two Thanksgiving dinners on the same day). We would go to Dan's house in the afternoon and then to my house in the evening. Thanksgiving also happened to be the day my hair was really falling out; from starting the rest of my chemo cycles. Dan shaved it again for me on Thanksgiving morning.

 

A couple weeks later my friend Shirley came back for scans. She had said that when she lost her hair she used duct tape to get the little nubs out. When you shave your head it is always a little prickly for a while; apparently duct tape just pulls them right out like waxing. AMAZING. My head was sooo soft. I really enjoyed being bald at this point (though it did get a little cold in the winter).

So it was Christmas time; really irrelevant in the world of cancer. I got really sick on Christmas and continued to have a cold for about 5 days. NIH decided to do a culture and discovered that I had a disease called RSV. This is typically something only babies get. The treatment for RSV involved being in this isolation room all day; then at night you get to sleep with an oxygen mask on your face. I had to stay in that room for 10 days. If we do our calculations that means that I was in the hospital on New Years; again a holiday that has no meaning in the cancer world. Luckily I have doctors who live in my world. I was able to get out of the hospital on New Years Eve for a couple hours. I felt like Cinderella; I had to be back at NIH by 1:00 am. This is one great thing about NIH, they really work around my schedule as much as possible and allow me to have a life. Once I finished my RSV treatment I was released from the hospital. However, when I got home I continually ran a fever. NIH kept doing cultures and nothing would grow. We were stumped and worried. Finally I got a bad headache one night and the doctors decided to do a sinus CT. The CT showed that I had a sinus infection. So once all my sicknesses were cured I felt great.

Dan's favorite Disney movie is Beauty and the Beast. I took him to Wolf Trap to see the broadway production of the movie. It was a great surprise on my part...I am really good at surprises. I wanted to make sure that the time Dan and me spent together was special; not that it wasn't anyways. It has been hard with Dan being at school and me being here getting treatment. We see each other as much as possible but sometimes it is not enough. Dan is my rock and when I am going through chemo and all this sickness I really rely on him to keep me strong.

It was the 25th of January, 2005. Day 0 of my new life, body, and blood. Transplant Day. My whole family and Dan came to the hospital to hang out with me for the day. I really have the ultimate support system!! The nurses always laugh at how large my entourage is. After Day 0 I had 2 DNA's. My skin and hair was mine while by blood was my sisters. So if I committed murder and only left blood on the scene; they could think that my sister did it. Silly, but I thought that was really interesting.

My mom stayed with me the entire time I was in the hospital getting the transplant. She is really the most amazing woman in my life. I haven't mentioned my parents very much in this blog but I will take the opportunity now. My parents have never let me come to the hospital by myself; even for something as simple as a blood draw. They are the most amazing support I could ask for. I know this has been a tough road for them, and they show it every once in a while; but we are each other's strength.

It was Day 12. 2 Days away from leaving the hospital. I had told NIH I would be out of the hospital in 2 weeks; this is the least amount of time a transplant patient has to be in the hospital.

I met a boy while I was in the hospital; his name was Michael. Michael was a couple rooms down from me. He would be getting his transplant in a couple days. Michael was an amazing guy who was trying to cope with having a recurrence. He had a beat box so I thought I would put some lyrics together and ask him to put a beat behind it. The rap would be about getting a transplant; hopefully this would help lift his spirits.

The Transplant Rap

I've got bags on my pole,

I don't know what they're for.

I want to break free,

But I'm behind a door.

They say 3 weeks,

And I'll get to leave here,

I'm gonna do it in 2

And without any fear.

I'll show 'em whats up,

Tell them I'm no joke.

I'll be done with cancer,

I just got my last poke.

I'll start a new life,

Take the lessons I've learned.

Because my cancer is gone.

And the world has turned.

I'm not looking back,

The transplant is done.

Cause with my family and friends,

I'm gonna have some fun.

I have always written poems. I won my 5th grade DARE writing contest and got to read my poem over the radio. 

So it was now Day 18 of my new life. Feeling great, tumor free. I still went to the hospital 3 times a week; but just for blood draws. I prayed everyday that this would be the end of my cancer. All I want to be able to do is return to school in the Fall to be with my roomies and Dan. I was on an emotional high; thoughts of a cancer free life were creeping in. I wrote in my journal..."it would really tear me up to hear bad news any time soon. We will just have to sit and wait."