Some Basic Info

I was first diagnosed with malignant brain tumors on 11-20-08 and I finished treatment for those on 4-13-09. I was recently diagnosed with a recurrence on 12-08-09. I set up this blog so people could follow along with my progress and keep up with what is going on in my treatment. I also wanted to put up information from my first go round so people could learn a little bit about what happened to me before.
The blog is set up with the newest posts first. Sometimes I will post stories from my first experience, in which casse it will be slightly out of order, but the titles will let you know. If you want to look at older posts, which may provide a better idea of the whole picture, use the "Blog Archive" tool on the right side of the page to browse them. The titles of the posts should be pretty self-explanatory. If you don't really know that much about me, or what happened, you should check out these two posts first: this one about what's happening now, and this one about my first experience.
Feel free to leave comments, it should be open to everyone now. Thanks for visiting, I hope this little blurb clears up some confusion, and I hope you like the blog.

Saturday, April 17, 2010

Just Another Update

Just checking in to let you all know I'm doing much better since leaving the hospital. I've been home almost  3 weeks now and have been enjoying it much more than being in the hospital. I'm still pretty immobile, my legs are really weak, but I have noticed them getting stronger as the time goes on. I have exercises that I have to do that the physical therapists at the hospital gave me to do, and they are definitely playing a big part in me getting my strength back. They also make me quite sore, but that's a good sign.
Now I'm able to walk around my house a little bit and I have only been using my walker when I need to go somewhere outside of the house: like the hospital for a checkup. I'm still incredibly tired, and I get exhausted pretty easily when I walk around, but it gets easier each day, and the independence it affords is nice.
Recently I've been able to return somewhat to normalcy in some regards. Because I can now walk on my own, I can get up and get myself some water or walk to the bathroom by myself. It's not much, but not having to call out and get someone to help me get up and walk to the kitchen or the bathroom is a huge convenience. When I was so dependent on others to get around it was really frustrating because if I tried to do anything by myself, my legs basically just wouldn't work. Now they do work! (somewhat) and it's great!
Another big step for me was that I was able to get up the stairs and go to my own room yesterday. Since coming home I have pretty much stayed in my living room. I sleep on the couch and someone else sleeps on a futon mattress we brought into the room, just in case I need something during the night. I still don't feel comfortable getting up and walking by myself at night. But I did make it upstairs to my room yesterday. I had to go up backwards on my butt up the stairs, and I only stayed a few hours because I still thought sleeping downstairs was a better idea, but being able to see my room and lay in my own bed was awesome. The last time I was in my room was March 5th, so as you can imagine, I missed it.
Medically everything is going really well too. Since leaving the hospital, my blood levels have been good, either rising or staying at the same place. This is a sign that the stem cell transplant was a success and that the stem cells have started producing blood cells again. I did have to have a transfusion of platelets on Wednesday the 14th, but that's the only transfusion I've had since leaving the hospital. Usually, stem cell patients have to receive many more, so I've been lucky in that regard.
The next step of my treatment is going to be radiation. With the last time I was treated, they radiated my full brain and spine, including the area where the more recent tumor was. However, that area did not receive the full dose of radiation that it can handle, because there was no tumor there at that point. So I'm going to get radiation just to the area where the tumor was this time to bump it up closer to the maximum of what it can handle.
I'm not sure exactly when radiation will start, it hasn't all been finalized yet, but it should be within the next few weeks. The process will be pretty much the same as last year: it's going to be downtown at Northwestern, it'll be everyday from Monday to Friday, the actual radiation process will only take about 10-15 minutes a day (somedays longer if they need to take x-rays), and the whole process will probably take about 3-5 weeks. As I know more and as radiation starts, I'll update the blog to let you all know what's going on.
Just so you all know, I will eventually document my hospital stay during the month of March in more detail, so if that seems a little lacking it should be better soon.

To sum up, I'm really happy to be home, and happy to be feeling stronger. The time I was in the hospital for the stem cell transplant was really a pretty bad time, so I'm really glad it worked and I'm out now. I have a few weeks to recover before anymore treatments, so I have some time to just relax. And hopefully radiation will go smoothly and I'll soon be on the road to recovery!

Wednesday, April 7, 2010

Back Home, Finally

I finally got home on March 30th after being in the hospital since the 5th. Needless to say I'm so happy to be home.
The last week and a half in the hospital was a little crazy. About 4 days after getting my cells back I got a fever and 3 bacterial infections and had to be transfered to the ICU. I don't remember too much about the first few days in the ICU, but apparently my blood pressure was dangerously low and I had fluid build up in my lungs. I had to wear a special pressurized oxygen mask to help me breath for a few days. After a few days I stabilized and just had to stay in the ICU until they had an isolation room ready for me back on the Oncology floor.

There's a lot of stuff to cover about the last month, which I'll do at some point soon in the future, but for now I just want to put up a post to let people know that I'm home, and have been home a little over a week now.
I don't feel great, I'm really tired and I've lost almost all my muscle mass, so I'm really weak. I got a walker and it is huge help, I'm able to make it around semi-independently. I'm doing physical therapy to regain strength in my legs, so soon i should be able to walk unnassisted.
But all in all, I'm doing alright, and I'll update soon about the rest of March.