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!


judyk said...

Hi Miles, I've been hearing about you from your Dad, and he steered me towards your blog. Thanks for sharing your experiences and thoughts, I hope it helps you as much as it inspires your readers. I'm a cancer survivor too (18 years ago!) and my best coping weapon was to blab to whoever would listen. You do find out who cares, and the best part is you emerge feeling like you can do Anything! And you never again sweat the small stuff.

doweiss said...

Yeah, Miles!!!!
I'm so glad to hear that you are home with your family. You are getting stronger every day, and that is wonderful news! You are definitely on the road to recovery. Terrific!!
Thanks again for keeping us all posted via your blog.
Mrs. Weiss

Anonymous said...

Hello... My name is Hea-Jung. I'm a friend/ vendor of LMNOP. I just heard from Adrienne about you. Wheneve she comes to NY show, she's been showing pictures of you and your little brother from her I phone with proud! Also, told me how handsome (actually HOT!) you are. I must say you even look great and handsome with hospital gown!! Hang in there and everyone is praying for you. Your good energy will heal and pretect you!

Anonymous said...

Hey Miles, Great to read about your progress. We think about you every day and hope for the best. You are very strong in your battle and your family and friends are right there with you. Hope to see you soon. Willy & Sheila

Terry MIles said...

Hey Miles,
Hope you doing better.. Just checking in. over the summer. I dont see Leland or your mom to get an update. I'm just thinkig about you