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.

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.


Aunt Margaret said...
This comment has been removed by the author.
Aunt Margaret said...


It takes a minute to catch one's breath after reading this, hence my delay in posting a comment.

First of all, I think we all agree that the MRIs and the animations you created are SO cool.

Next, to a longtime aficionado of compelling medical articles such as myself (tee hee), your unfolding story undoubtedly qualifies for The File. Incredibly organized, and exactly responding to your stated purpose, you have clearly described your complex medical journey using potentially incomprehensible medical jargon in a completely understandable manner that makes us all feel smarter. Your late grandmother Mary once told me that only the very smartest people can teach difficult concepts in a simple way. I now quote one of her favorite expressions: “Touche!”

We (in your family) adore you, are proud of you, and just want you well again. With this compelling blog you created, my friends can now see that I'm really not exaggerating when I brag about you.

I can't wait for the next update! You story is fascinating, as you are.

One of Your Many Fans,
Aunt Margaret

Anonymous said...

Hi Myles from Aunt Mary and Will. We will begin following you as soon as Will gets us set up. In the mean time, our very best, and we will be thinking about you.

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