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.

Thursday, February 18, 2010

Update! (Updated)

I ended up not having surgery this last go round in the hospital. I got blood transfusions to hopefully raise my blood levels to a point where they would be comfortable with surgery, but even with the transfusions, my blood levels were too low.

What ended up happening is my neurosurgeon, Dr. Alden, drained the pseudomeningocele and wrapped a very tight pressure dressing on it, in the hope that it would either heal itself, or stay manageable until I could have surgery.

That's most of the fluid from the first time they drained it.

Thats all the fluid from the second time they drained it: about a week later.

Again, I know this isn't a ton of information, I wrote this post on my phone as well. I've just been having really bad headaches because of this whole thing, and it's much easier to just grab my phone while I'm laying down and post something small. Also, as soon as I feel better, I'll update this and the previous post with more information and more about my actual experience.

Sunday, February 14, 2010

Back In The Hospital (Update: Picture)

As I said in the last post, my second round of chemo was going pretty well. Everything went smoothly and I was able to go home on Wednesday.
I'm typing this on my phone right now, so I'm going to make a long story short (I'll update it soon). Right now I'm back in the hospital awaiting surgery. I'm going to have surgery to remove a fluid buildup on the back of my head. The technical name is pseudomeningocele.

Happy Valentine's Day!

Some more information: A pseudomeningocele is spinal fluid that has leaked from inside the brain and is  now stuck between the skull and the soft tissue outside the head (the skin plus some other stuff.)

Tuesday, February 9, 2010

Second Chemo in Progress!

I'm in the hospital for my second round of chemo right now. I am actually not feeling to horrible, and I feel a sudden small burst of energy, so I figured I'd use it to update my blog. So far I've had 4 days of the Cisplatin and Etoposide and today is my last day, and that will start in about an hour and a half. After that I have fluid replacement until about 3 in the afternoon tomorrow, then hopefully I can get out of here!

Here's to hoping day 5 goes as well as days 1-4!

Thursday, February 4, 2010

An Opportunity To Help Out

My aunt Sue has created a website for those who want to help me and my family out. The website is a sign up for people to make us dinner. It is and you have to create an account on the website to be able to sign up.
My grandmother suggested putting a link to it on my blog so more people would know about it, and I thought that was a good idea. Thanks to Sue and thanks to all of you who have/ will sign up!

Wednesday, February 3, 2010

What's Coming Up

I'm just going to do a quick post about what's happening in terms of my treatment in the next few days.

On Wednesday and Thursday, the 3rd and 4th of February, I have to do a second round of stem-cell harvesting. The doctors weren't able to get as many stem cells as they needed, so they have to get some more so they have enough to successfully complete the latter part of the treatment (see my earlier post). The doctors weren't concerned with the fact that they weren't able to get enough cells during the first harvest. Me having had chemotherapy and radiation from the first tumor means that my body already produces less stem cells than the average person, so the doctors weren't surprised that I needed to have a second harvest. In total, the doctors want to have at least 2 million stem cells, and they got 1.35 million from the first harvest, so they should have enough after this second harvest.

On Friday, the 5th of February, I start my second round of regular dose chemotherapy. As with my first round, I'm going to be in the hospital for the whole duration so that they can monitor me. Because I had a reaction to the Ifosfamide from the first round and they don't want to use it anymore, I am going to be getting a new combination of medicines. As opposed to the Ifosfamide, Carboplatin, and Etoposide I received last time, this time I'm getting Cisplatin and Etoposide. Cisplatin is a related drug to Carboplatin, it is just a little more aggressive, and thus a little more toxic. So the side effects of the Cisplatin will probably be similar to the side effects of Carboplatin, just a little worse. The nasty long term side effects that Cisplatin is infamous for (hearing loss, kidney problems) occur in patients who have multiple rounds of treatment with it, I'm just having one, so no one is too worried about that. Also, to prevent the chemo from sitting in my kidneys, I'm going to have to have a lot of fluid replacement, which conflicts with me taking my medication for my Diabetes Insipidus, so I'll probably be in a similar situation to the last round of chemo where I have to have a catheter just so I don't have to get up to pee every hour.
I'm going to be receiving the chemo over the course of 5 days, so I'll be in the hospital at least through Tuesday, but hopefully everything goes smoothly and I can leave soon after that. I'll try and post some kind of update as soon as I can afterwards. I'm prepared for it, and I'm going to make sure they keep me full of anti-nausea medicine, keep my fingers crossed and hope for the best. Wish me luck!

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.