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.

Monday, January 25, 2010

Hair Cut

On Friday I started noticing my hair was falling out. Nothing drastic, just if I ran my hands through it, I would get a noticeable amount of hair on my hands. Because I didn't want to have to go through the trauma of having huge chunks of hair falling out on my pillow or lining the insides of my hats, I decided to go ahead and shave it all off. I did wait until Saturday because it was late Friday and I knew it would take a while and I would have to shower afterwards.

Here are some before pictures:

I ended up having to get all my hair in several stages. First I used scissors and cut most of it off, then I used buzzers to get more of it off, and finally a razor to get it as short and consistent as possible.

Here are the results:

I decided to leave my facial hair because that hasn't started to fall out yet, so why shave it? It was weird to have to worry about keeping the facial hair even on each side because it was opposite from normal: instead of keeping the top, I was keeping the bottom.

I also have a picture of almost all of the leftover hair, at least the big chunks:

Monday, January 18, 2010

Some Pictures From The First Round of Chemo

Here's a picture of all my bags of fluids from where I was laying. There's some chemo, some saline, some pain medication, and a vasopressin drip (I'm not completely sure how to describe this yet, I'll put up a post later.)

Also, here is a link to a photo of my PICC line. It is a little strange to look at, so I didn't want to just put it on the site. If you're interested in seeing it just click here.

Friday, January 15, 2010

First Round of Recurrence Chemo, Pt.2

I went in for chemo on the morning of thursday the 7th of January, but because of the complications I didn't actually start chemo until around 3 in the afternoon on friday. The three chemotherapy medicines that I got this time were Carboplatin and Etoposide, both of which I had had for the previous treatment, and Ifosfamide, which was a new one.
Initially everything was going pretty well, I started out with the Ifosfamide and didn't really experience any nausea, even a few hours into it. What I did experience was a rare side effect that causes eyes-closed hallucinations. This is a result of the medicine creating too much toxicity in the brain. The hallucinatory effects lasted for about a day, but I would say they were much more preferable to the intense nausea I experienced last time. I would close my eyes and have incredibly vivid visions, usually of the same hospital room, but with people moving in and out and different things in the room changing. The visions were so vivid that I would open my eyes and it would take me a little while to realize that they had not been real. The doctors were concerned about this side effect and decided to reduce my dose for the second day and see if that made a difference. Other than my weird reaction to the Ifosfamide, the first day of chemo went pretty smoothly. Like I said, I didn't really experience any nausea with any of the medicines, I was still taking anti-nausea medication, but it seemed to keep it in check.
The second day of chemo was much like the first, I spent most of the morning sleeping and eating what I could and I started the Ifosfamide around 3 in the afternoon again. The hallucinations had subsided a little bit by the time I started the second day, but within a little bit of starting the Ifosfamide again they got much worse. The doctors decided to stop the Ifosfamide for good after that, because the fact that a lower dose didn't make a difference meant that to continue the medicine could cause much more serious damage. After getting the small dose of Ifosfamide, I got the remaining two chemotherapy medicines for the day: the Carboplatin and the Etoposide. Again, the second day I had almost no nausea, just the lingering effects of the Ifosfamide.
On the third day I only received the Etoposide. I had been scheduled for 3 days of Etoposide and Ifosfamide, and 2 days of Carboplatin. They stopped the Ifosfamide in the middle of the second day and I finished the the rest of the medicines as scheduled. The third day was dedicated mostly to keeping my headache pain and my fluids under control.
Due to the toxicity of the chemo, it isn't good to let it sit in your kidneys. Because of this, I was hooked up to IV fluids constantly, just to keep fluid moving through my body and flush out the chemo. One of my conditions from the first tumor, Diabetes Insipidus, makes this much more complicated. This condition means that my body doesn't retain water, I pass about a liter of liquid an hour, regardless to how much goes in. This would seem like a good thing for getting the chemo out of my system, and it is, as long as they keep putting liquid in to match the output, so I don't get dehydrated. The downside to this is that I have to pee out a liter an hour. Because they had to do constant hydration for 72 hours, I would have to pee at least every hour for 72 hours, which isn't very fun, and would not leave much time for sleep. They would not be able to give me the medication to make my body retain water because then I would become over hydrated, seeing as the medication would stop me from passing any of the liquid.
Just because I didn't want to have to deal with worrying about the fluids constantly and I wanted to be able to sleep, I opted to get a catheter put in, and it was 100% the right decision. It made everything much easier and I didn't have to worry about going to the bathroom, and I was able to actually sleep, which played a huge role in how I felt throughout the whole thing.
After I had finished all the chemo and the related hydration, which was sometime on saturday night, I was just recovering. I ended up staying in the hospital until tuesday afternoon just so the doctors could make sure my fluid levels were all normal, that there were no other rare side effects, and to keep my pain under control.
Tuesday was when they were able to switch all my medication to stuff I could take at home, and so I was able to leave the hospital round 4:30 in the afternoon. Going home was a huge relief, just because it's alway nice to sleep in your own bed, and the hospital is a pretty restless place.
I have been at home since then, recovering a little bit each day. I haven't really had any issues with nausea, which I am incredibly glad for, and the main thing is I just feel exhausted all the time. I've just been laying in bed most of the day, listening to my iPod or sometimes going on the internet. Everyday I feel a little bit better, which is all I can hope for.

Thursday, January 7, 2010

First Round of Recurrence Chemo, Pt.1

I did go to the hospital on thursday morning, but I ended up going to the ER instead of getting admitted. Early thursday morning I woke up and my headaches were significantly worse. My mom let me stay in bed as long as I could to see if they would get any better, but they didn't. We were scheduled to be at the hospital at 9:30 so I could get a Peripherally Inserted Central Catheter (PICC line for short) which is basically a more permanent IV that they put into your arm. The tube actually goes to the tip of the heart and this makes frequent blood draws and IV fluids much easier than with a standard IV or needles. Also, some of the chemo can't be given directly into the veins because it will burn them, so pumping it into the heart first dilutes it enough to where it won't cause problems.
So we were planning on leaving at around 8:45 in order to be there in time for the PICC line placement, but after I got up, I threw up. After this, my mom called the oncologist, Dr. Fangusaro, and he said we should just come straight to the Emergency Room, as they would be able to get something done much faster. We went to the ER and they were able to get me on stronger pain medication pretty quickly, so that helped with the headaches, they also gave me an MRI pretty quickly to make sure there was no pressure or other complications. Luckily nothing showed up on the MRI. At this point they took a sample of my spinal fluid from the ommaya reservoir on my head (I know the website says it's for administration of chemo, mine isn't, it's just for drawing fluid.) All the signs pointed to a complication called aseptic meningitis, which is a chemical infection. This could've been caused by my brain rejecting the little bit of blood that got in the spinal fluid or other chemicals used during surgery, and it would explain why my headaches were getting worse. The main treatment for aseptic meningitis is steroids, so the doctors put me on a much higher dose of steroids. They also took some fluid from my ommaya to test and make sure that I didn't have a bacterial or viral infection. These tests took 24 hours, and they didn't want to start chemo until they were sure there was no bacterial or viral infection, so I was admitted to the hospital to wait. In the waiting period, I was given antibiotics just in case there was a bacterial infection. Also, thankfully at this point my headache pain was a lot more under control, and I had gotten my PICC line put in.
So that was thursday up until about 4 in the afternoon. I pretty much just rested until friday, when I got my chemo at around 3 in the afternoon, after the results of the tests came back negative. The chemo is coming up in part 2...

I just wanted to give a quick update about now too. I want to talk about the whole chemo process in a mostly chronological order but I also want to let everyone know how I'm doing now. I'm at home now, and I got out of the hospital yesterday the 12th. Chemo was for the most part successful, (more on that soon in part 2.) and now I'm at home and feeling a little bit better than I did in the hospital.

Monday, January 4, 2010

Me and Tord

This is a picture of the neurosurgeon who operated on me, Dr. Tord Alden, and me on the morning of 12-21-09 before the resection surgery for the new tumor.

Me and Tord

First Day of Stem Cell Harvest

Today was the first day of the stem cell harvest. Basically I had to lay in one position for about 7 hours with an IV in each arm. My blood went out my left arm, into this machine:

Stem Cell Harvester

Here's a picture of the whole set-up:

Me Being Harvested

It wasn't that bad actually. It was mostly just boring, I couldn't move my arms, so I couldn't really do anything except listen to my iPod, which is what I ended up doing. The only other issues were that I was really exhausted afterwards, which is really common, and I had tingling in m fingers and nose. The tingling is because they add an anticoagulant to the blood to keep it from clotting in the machine, so it goes into my body after it has moved through the machine. While in the body it bonds with calcium in my bloodstream, reducing the amount of calcium in my body, which can cause a tingling sensation in the extremities. To combat this I was on an IV drip of calcium, but I still didn't have enough in my system to completely stop the tingling.

Other than a few issues and being really boring, the first day of the stem cell harvest went pretty well. They won't know how many cells they got until they're able to get them under a microscope, which will be tomorrow morning when I have to go back or day two. Hopefully they were able to get a lot of cells today and they'll have enough by tomorrow.

Sunday, January 3, 2010

Pictures of Tumors from The First And Second Times (Click for Larger Pictures)

The First Time:

The little tumor was on my pituitary gland, the big one was near the pineal gland.
Here's a picture from the top:

Here's some animations of a few images to give you an idea of depth.

This Time:

This time it was located in my left cerebellum.
Here's an image from the top:

Here are some animations of this tumor: