Work-up Week (Take 2)

Dear Readers,

I took a little break from blogging this past week. Mostly because I needed a break and also because I haven't been getting very many comments so I felt a little discouraged. No worries, I'm back to blogging now.

This past week has been pretty crazy. After getting back from New York, I was having really

bad muscle pain in my legs and feet. I started having muscle spasms and I could barely walk. I think it's a side effect from one of the medicines I was on because the med is known to cause muscle pain. The walking I did in New York probably triggered the spasms and pain. After a few days of pain, nothing was working to ease the pain so my doctor suggested that I be admitted to the hospital so that I could get some stronger pain meds. I spent Thursday, Friday and Saturday in the hospital and left Saturday afternoon after my pain dulled a little bit.

Saturday night I had a few friends over for pizza to hang out before I left town. It was nice to see some people before leaving.

Sunday morning I went to breakfast with my dad, stepmom, brother (Jameson) and half brother (Ethan). After that, my mom and I left town. We drove straight to Minneapolis without making too many stops. We got to the Ronald McDonald House around 4 p.m. and checked in right away. We had a wheel chair delivered to the house for me to use until my leg pain goes away. We lucked out and got a really cool room! It's basically like a small apartment, with a kitchen, living area, bathroom and one bedroom. We also have a private, screened-in porch attached to our room. We're on the second floor so it's a nice balcony-type thing. There are two beds in the bedroom, which my mom and I will share. There's also a pull-out couch in the living room for friends to sleep on if they visit. We have one TV in the living room but my dad is going to bring up another TV for us to put in the bedroom so my mom and I don't fight over what to watch. On the right there is a picture I took of the front of the house.

Monday morning started my Work-up Week. Work-up Week is the week before transplant where you have to get a bunch of tests done to make sure that nothing is wrong before you start transplant. On Monday I had an Echocardiogram, EKG, Chest X-ray and Radiation consultation. We ate lunch at a local place on campus called Sally's Saloon. It's really nice that the hospital and Ronald McDonald House are both located on the University of Minnesota campus because we can walk to basically anywhere we want. For dinner we went out to the Mall of America and ate at Bubba Gump.

Tuesday morning I had a Pulmonary Function Test, History and Physical, and

CT scan. After that I had to get a Bone Marrow Biopsy. I've had several of these before but they never get any more pleasant. First they sedate me and then take some marrow and bone from the back of my hip. I'm usually pretty sore for a few days afterwards. This one didn't hurt too bad and the sedation meds put me to sleep really quickly. After that I headed back to the Ronald McDonald House to sleep for the rest of the day.

On Wednesday I had a line consultation in the morning. The line consultation is where we talked about me getting my hickman put in. The hickman is important because that's how I will be getting transfusions, chemo and other drugs. Thankfully I'll only have to have it for a few months and then they can remove it because I already have my port. Medical devices like hickmans and ports are really important for people who need to be accessed constantly because it's much safer than constantly trying to access random veins. After the line consultation I met with someone from Pharmacy to talk about all of the drugs that I will be on during transplant. Then we walked over and ate lunch at a place called Stub and Herbs. Next I met with my social worker named Janet to talk about what to expect during transplant. Janet is really nice and she helps make things easier for patients and families. Then I met with Dr. MacMillan. She's not my doctor but she will be the doctor who is in charge of the floor when I'm admitted to the

hospital. There are nine Bone Marrow Transplant (BMT) doctors who rotate their time on the unit in the hospital. They each take turns being in charge for 14 days at a time. While they are in charge, they go around to check on the patients daily and they make sure that everything runs smoothly. She will also coordinate with my actual doctor, who is Dr. Tolar.

Dr. MacMillan had looked at the results of all of my work-up tests and we talked about what her conclusion was. She basically said that everything looks great and I'm ready to start transplant. We were going to start chemo early next week but if we did that, some of my family members wouldn't be able to come up for the actual transplant day. So instead, we've decided to wait a few days. The plan is to admit me to the hospital next Friday, April 30th. I'll have the surgery to get my line placed on that day and then I'll start the chemo on Saturday, May 1st. That will put the actual transplant day on Tuesday, May 11th. My dad, stepmom, two stepsisters, brother and half brother will all be coming up so that they can be with me on the actual transplant day. It's really important to me that my whole family be there because this will definitely be the most important day of my life. It's the beginning of my new life.

Today, Thursday, I only had one test left which was an ultrasound of my abdomen. After that, we walked over to this really yummy place called Punch Neapolitan Pizza. I had a pizza with arugula, goat cheese, prosciutto and cracked red pepper. It was spicy and delicious and thin, just like I like it. These pizzas are cooked in 90 seconds! There's a picture of my pizza on the left. The rest of the afternoon was pretty relaxing. I finished my graduation announcements and mailed several 'thank you' cards for my recent trip to NYC.

Now that we're done with testing and have about a week off, we're probably going to explore some local restaurants and maybe do a few fun things while we wait. I'm still in a wheel chair so my goal is to be able to walk by the time I'm admitted to the hospital. I'll be sure to update before I go into the hospital next.

If you're not already following this blog on facebook, you can become a fan by clicking on the facebook link on the right side of this blog. Keep reading and leave comments so I know you're reading! Also feel free to tell me what YOUR reason to smile is for today.

**Reason of the Day: After dinner, while walking back to our room, my mom and I were stopped by a young dad in the hallway. He was grinning from ear to ear and couldn't help but chat us up even though we had never seen us before. At the first chance he got he pulled out several pictures from his pocket and asked if we wanted to see his baby. He explained that he finally got to hold his two-week-old baby for the first time today because he was finally healthy enough. Newborn babies are always a reason to smile (RTS).