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.

Tuesday, February 2, 2010

Platelets and Waiting

It has been a while since I've updated the blog, mostly because there hasn't been too much going on recently from a medical stand point. This is most definitely a good thing. Since my last blog post I've had a few routine visits to the doctor and two platelet transfusions, nothing too out of the ordinary. Other than that I've been enjoying relaxing at home. I have been feeling much better and my energy level is significantly higher than it has been; overall I don't feel that bad.
Before I talk about what's coming up, I'll talk a little about what's happened since the last post. I had two platelet transfusions: one on the 21st of January, the other on the 26th. It is a pretty routine procedure after having chemotherapy. One side effect of chemotherapy is that it lowers your blood counts. It suppresses the body's ability to make blood cells such as red/white blood cells and platelets. Luckily, if the levels of red blood cells or platelets drop too low, the patient can receive a transfusion to boost them back up (white blood cells can't be transfused, thus the whole stem cell rescue thing).
My platelet levels came back pretty low from the blood tests I had done, so I had to come in Thursday the 21st for a platelet transfusion. The process isn't that bad: I had to have an IV hooked up to my PICC line and then just wait for about an hour and a half for all the platelets to go in. The fluid that goes in is pure platelets so it doesn't even look like blood, it looks kind of like beige orange juice. If I have another platelet transfusion I'll have the foresight to take a picture.
The first platelet transfusion went fine, but when my blood was tested a few days later, my platelet level was still low, so I had to come in on Tuesday the 26th for another transfusion. This one went much the same, until I was about 70% done, when I started having an allergic reaction to the platelets. All of a sudden, I noticed my asthma was acting up and I was starting to have a little trouble breathing. I told the nurse and used my inhaler, which helped with the breathing. A few minutes later, my eyes started to itch, and a few minutes after that my ears started to itch. Apparently having allergic reactions to blood products is fairly common, and the nurses were prepared to deal with it really quickly. Immediately after I told them I was having breathing problems they stopped the transfusion, and within minutes they were able to give me some Benadryl. Because the Benadryl was through IV, it started to take effect almost immediately, and I noticed the itching going away. The asthma problems that I was having didn't completely go away, so because I had already received most of the platelets, I was done with platelets for the day.

During the transfusion I was visited by my neurosurgeon, Dr. Alden, in regards to a squishy area on my head around the incision that I had noticed in the past few days. He inspected it and told us it was a small build-up of fluid that could be a side effect of the surgery. Sometimes the seal that they create is not perfect, or gets shifted around, so fluid can leak out and settle under the skin, like it did with me. It felt like a little squishy pillow on the back of my head. It didn't hurt and wasn't tender to touch, so he wasn't concerned about it being an infection, but just to make sure everything was good, he scheduled me for a quick MRI after my transfusion. On my MRI orders, they referred to the fluid build-up as a "boggy mass." To keep the "boggy mass" down, Dr. Alden suggested keeping pressure on it by wrapping an ace bandage around my head, or wearing a tight hat. Keeping pressure on it would speed up the reabsorption process. Wearing an ace bandage on my head made me look like the stereotypical head injury patient, like someone out of the three stooges.
After the transfusion was finished, I had to wait for the MRI, but because I had had the allergic reaction to the platelets, I had missed the initially appointed time. Because of this I had to wait about two hours for a spot to open up in the MRI schedule, so I could have a 5 minute long scan. I ended up being at the hospital for the better part of the day, which was pretty annoying.

So that's what has been going on since the last post: a little bit of adventure, but mostly I've just been recovering and relaxing at home, and overall not feeling too bad.

1 comment:

Rachel Milos said...

Hello from an old friend - Miss Milos, your 6th grade social studies teacher!
I'm back in Chicago and ran into a few teachers from Lincoln the other night. We got to talking about some of our old favorite students, and of course, your name came up, and they told me about you and your blog.
You were always a special, witty, and amazing kid, but now you're this grown-up young man, who has turned into a beautiful writer with a resilient spirit to match.
I'm impressed by your candor and grace and sincerely hope you are doing well and enjoying your senior year.
All my best wishes,
Rachel Milos