Time for a Little Escape

Hello out there!

Well I was about a quarter done with my transplant; meaning I was on Day 26 of 100. I had to wear a mask in public for 100 days after my transplant. I actually got pretty used to it; not that the masks aren't extremely hot like a steam bath. It was Valentines Day and Dan came down to celebrate the holiday with me. He decided he wanted to cook for me; he made his famous chicken parm. It was delicious. I set up 2 candles and some romantic music and we had a delicious dinner. Another great page to add to our scrapbook; I will give it to him for our one year anniversary. Our relationship has gotten a little strained over the past months. It is really hard to have a long distance relationship; but our love is strong enough to get us through. He is a great support but I would not mind at all if we saw each other more than once a week. I know we are trying our best to see each other but sometimes it doesn't work out.

Since I had gotten some chemo before my transplant all my hair fell out again. This time even my eye lashes and eye brows fell out. Very strange looking, but very easy.

As the transplant continued I got the feeling that I was more and more done with cancer. This was the longest time I had gone without treatment. We would try to see what the transplant could to. It was Day 43 and my emotions were very split. Though I still had to take antirejection drugs, and wear a mask in public all I wanted to do was be normal. Normal meaning have hair, be in school with my friends, see Dan everyday.

I did however decide to go snowboarding again. My sister and I went with another friend. I had this feeling in the back of my head that if I fell, it would make my tumor grow again; really not the case but can you blame me. I had a blast. It was just like riding a bike. My sister however sprained her wrist. Maybe we should just avoid the snow for a little until our luck comes back.

It was now April. I decided to ask my parents if I could have a dog for my birthday (in June). I had seen a dog at NIH a couple times now and had fallen in love. The dog was a cavachon named Sophi. I knew this was the dog I wanted. I went to the same breeder that the dog owner had gotten Sophi from and found my little companion. He was extremenly playful and had an amazing potbelly. It was love at first sight. I decided I would name him Chemo. Some may think this is really sick but now whenever I think of chemo I will think of my dog instead of the nasty medicine. 

It is interesting this life of cancer. There are many ups and many downs. The ups have a duty to outweigh the downs or else who knows what will happen. I have been dealing with this disease for a year now and have made many close friends who know exactly what I am going through. It seems that people all around me are losing the battle. This only makes me think about my turn even more. This is a dark side of this disease that they don't tell you about when you are first diagnosed. To a certain extent it may be better to not meet anyone else. But then I wouldn't be me. I will continue to provide as much positive energy to my friends as possible and will support them to the last day. 

Like I said, time for an escape. I was granted a Make A Wish from an adult organization. I decided that my whole family would go to the Keys. It was one of the best vacations. We stayed at the northern most key; Key Largo. We spent a week in the keys and had many wonderful adventures.

- Rode on a glass bottom boat

- Went parasailing

- Saw amazing sunsets

- Went snorkling, I saw one fish that was turqoise with purple outlined scales, its tail was red and yellow...beautiful

- We went on an airboat tour of the everglades to see the alligators, I even held a baby alligator; cute right

- We swam with Dolphins...AMAZING. Apparently the woman said the Dolphins new I was sick because they have sonar and could see the tumors

- We drove all the way down to Key West; the water had about 6 different colors in it, so clear and beautiful

There was an artist in Key West who was making spray paint pictures. I asked him what he would draw for a cancer patient; he told me a cigarette. We laughed and then he said "something to cheer them up". He proceeded to smoke a cigarette and chug a beer and get to work on my painting. It was beautiful. My Make A Wish was perfect. Our family really needed the time together in a place away from the world of cancer. Though when you go on vacation you always have to come back. Back to the life you were trying to escape in the first place; and no matter what state you left that place in there is no telling what you will come home to.

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."

one of my favorite sayings....

Hello Radiation...Goodbye Tumors

Hello out there!

Well lots of things happened within the next few months. First, typical cancer and NIH style, I was in the hospital as soon as I got home from NIH with a fever from chemo. Though I was only in the hospital for 3 days....it is just case and point for the life I would be leading for the next 4 years.

School is now in session and I am not there. I know this is what is best as far as being able to dedicate myself completely to beating this disease. It is still hard to watch everyone else being able to go and live their lives and pursue their dreams. My life is on hold, forced to live a life of needles and rat poison. Granted it is not all bad; I have met some amazing people....and I get to spend a lot of time with my family. Also, while everyone else gets to worry about exams and papers I get to just hang out...typically a persons dream; to be able to get by and do nothing. I decided that I would go a little stir crazy if I did nothing all the time so I started to work full time at the doctors office I worked at before. This is another way to distract me from focusing on the situation that was consuming me.

I continued my treatment with 6 weeks of radiation. I was not scared or anything in the beginning, it was more a curiousity. Shirley went through radiation before I did and she had to wear a head basket it seemed like. Her cancer was in her mouth so they had to make sure her head didn't move. It was a very interesting piece of equipment. She didn't have many side effects so I was able to see a little of what I would be experiencing. I never got really tired, until the last week or so. Just like with chemo, I would go play volleyball Tuesday nights with a pick up league. This was my way of continuing to play. Radiation went great, I had a spot on my chest and back where the radiation went in but really those are just battle wounds. I really don't care what my body looks like at the end of this...scars are cool and they show that you are bad mama.
My hair is starting to come back because I have not had chemo for about 8 weeks. It is the most perfect fuzz. Soft as a puppy's fur.

At the end of radiation I got scanned...the results could not be better. The largest tumor in my lungs went from 5cm to 2cm and the tumor in my glute was gone. AMAZING. Could this be the start of a break? The next step is a stem cell transplant in January. My sister will be the donor...amazing that my mom had 2 kids and we are a complete match!!!! That is god working! About a month after the initial post radiation scans I got a pet scan.....my tumors were dead; nothing lit up!!! I just couldn't believe it. I knew better than to get to excited but it is really hard sometimes to not think about the excitement of the end. Especially when I have Shirley around. As usual though, with the good comes the bad; I had pnemonia.

I went up to Frostburg to see the volleyball girls. When I walked in I noticed that they all had the number 6 on their left sleeve. They had dedicated the season to me. I was so surprised. It is amazing to have the support that they give me. The game went great; though it was unbelievably hard to watch and not play. I stayed up for the weekend...because I don't have any responsibilities at home. Somewhat of a gypsie I was.

Dan and I were perfect He came down to Gaithersburg and we went to a drive in theatre (another thing to put in the scrapbook).

Meanwhile, while all this excitement is going on, I still had school to figure out. I received a medical leave of abscence and I still had one more class to finish; and don't you know I have about 0 motivation to finish.

I did however, in the end of October, get to speak in my friend Stacy B's class about my story. This is when I first realized what I wanted to do. I realized I would love to be able to share my story; why else would I be going through this?

It was now the end of November. I started the rest of my chemo cycles. This chemo gets followed up with a few doses of prednisone. I notice that by the 3rd day of taking the pill I am ready to break at the drop of a hat. The feeling would really come on like clock work, I would get sad over a particular situation that was really not a big deal and mom would ask me how long I had been on prednisone.

I also met a new girl Amy. She is almost 18 and such a bright light. I think we will be good friends. Shirley is done with her treatment. We had a "no more chemo" party for her. It is a great thing to be surrounded by a success story. I will make my own success story as time goes on.