In my daily googling on brain tumors, I ran across an article about new brain tumor treatments under development. It is good to know that someone is working on this rare disease, most of the funding goes to more popular diseases.
Read more here:
Brain tumor discovery could lead to new treatment
Friday, July 22, 2011
Friday, July 15, 2011
Another Migraine
Last month I had a severe headache that sent me to the doctor, today I had another severe headache but skipped the doctor part. It came on at work, and was so bad I had Holly come pick me up. There was no way I could drive.
I think that both of these episodes were a result of missing a dose of Keppra (Anti-Seizure medication). Both times I missed a dose the day before. It is pretty scary to think that I am that so dependent on Keppra that missing a single dose makes me have a migraine. I do not intend on testing this theory.
I think that both of these episodes were a result of missing a dose of Keppra (Anti-Seizure medication). Both times I missed a dose the day before. It is pretty scary to think that I am that so dependent on Keppra that missing a single dose makes me have a migraine. I do not intend on testing this theory.
Sunday, July 10, 2011
4 Chemo cycles complete
I tried to follow through with MAEB (Move Around and Eat Better) this cycle, and was pretty successful until Friday. I kept my meals small, healthy, and frequent as opposed to the normal starve and gorge. I took walks in the morning and did light chores around the house. This was making feel a little better, well worth the low cost...till early Friday when I was taken over by Chemo Daze. My energy and focus was replaced with exhaustion and confusion. This improved a little on Saturday, and today (Sunday) I actually have the presence of mind and endurance to blog about it.
I did the decadron steroid +/- 1 day with the chemo, and I can say this does help with the headaches, but also induces some anxiety and insomnia. I think I will stick with this recipe next time.
Hair Update:
I cut myself shaving the back of my skull last week giving me a dime-sized scab, making it difficult to continue to shave. Holly had the idea to let my hair grow out and see what it looks like. I post picks in a couple weeks.
Doctor Confusion Clearing Up:
I blogged a couple weeks ago that I was not content with the description of the successive MRI readings the oncologist was giving me. I continued nagging my oncologist about this and they responded by; sending me the surgery report, the pathology report resulting from the surgery, and the radiologist will be at my next oncologist appointment. One question did get cleared up so far, part of my tumor was removed during surgery. The surgeon, even in his official reports, says a only a 'biopsy' was taken - no mention of resection. But then I looked at the pathology report where the indicate 'how big' the biopsy sample was. The pathology report indicated the sample was about the size of a golf ball - that does show up on the MRI as a empty spot. Here I was thinking that a 'biopsy' is a smear on a microscope slide. I still need to grill the radiologist about what they were talking about when they said the tumor 'got smaller' from post-surgery to the start of 5/23 Chemo. Seems to me this was a result of the surgery, not the treatment. Hopefully all this will be cleared up at the end of the month Dr. appointment. One last note - that surgery report was hard to read. I contained commentary from the doctor about what he saw when he looked at my brain. His description contained some pretty disturbing adjectives.
Emoticons:
i colon left parenthesis lately. Before all this came about, I led a very active life. Summer concerts, camping, biking, hiking, fixing up the car, woodworking, computer projects...to name a few. Especially the summer concerts - there is nothing like bouncing up and down at a rock concert with a 6 pack under your belt in the hot sun. I am also an accomplished air-guitarist, the other fans surely miss me too. Now I lay in bed with my ipod, muffin headphones and some deep cuts from the bands like Yes. Not exactly lifetime memories producing activity.
I am in the middle of the Chemo forest now, and do not see the light - but I will keep marching.
I did the decadron steroid +/- 1 day with the chemo, and I can say this does help with the headaches, but also induces some anxiety and insomnia. I think I will stick with this recipe next time.
Hair Update:
I cut myself shaving the back of my skull last week giving me a dime-sized scab, making it difficult to continue to shave. Holly had the idea to let my hair grow out and see what it looks like. I post picks in a couple weeks.
Doctor Confusion Clearing Up:
I blogged a couple weeks ago that I was not content with the description of the successive MRI readings the oncologist was giving me. I continued nagging my oncologist about this and they responded by; sending me the surgery report, the pathology report resulting from the surgery, and the radiologist will be at my next oncologist appointment. One question did get cleared up so far, part of my tumor was removed during surgery. The surgeon, even in his official reports, says a only a 'biopsy' was taken - no mention of resection. But then I looked at the pathology report where the indicate 'how big' the biopsy sample was. The pathology report indicated the sample was about the size of a golf ball - that does show up on the MRI as a empty spot. Here I was thinking that a 'biopsy' is a smear on a microscope slide. I still need to grill the radiologist about what they were talking about when they said the tumor 'got smaller' from post-surgery to the start of 5/23 Chemo. Seems to me this was a result of the surgery, not the treatment. Hopefully all this will be cleared up at the end of the month Dr. appointment. One last note - that surgery report was hard to read. I contained commentary from the doctor about what he saw when he looked at my brain. His description contained some pretty disturbing adjectives.
Emoticons:
i colon left parenthesis lately. Before all this came about, I led a very active life. Summer concerts, camping, biking, hiking, fixing up the car, woodworking, computer projects...to name a few. Especially the summer concerts - there is nothing like bouncing up and down at a rock concert with a 6 pack under your belt in the hot sun. I am also an accomplished air-guitarist, the other fans surely miss me too. Now I lay in bed with my ipod, muffin headphones and some deep cuts from the bands like Yes. Not exactly lifetime memories producing activity.
I am in the middle of the Chemo forest now, and do not see the light - but I will keep marching.
Wednesday, July 6, 2011
Fourth Chemo Cycle
I'm in the fourth chemo cycle, 3 days down two to go. The last two days are the worst. In the first three cycles I was basically in bed for the last two days. I know laying around like this makes me feel worse. This cycle I promised myself to Move Around and Eat Better in these last coupe days. MAEB that will make me feel better.
Tuesday, June 28, 2011
3 Month MRI shows no growth
Today I had a 3 month MRI to check 'progress'. The doctor said there was 'no change since the previous MRI". In other words (mine)...good news, the tumor has not visibly grown and no new tumors have developed!
I asked the doctor to show me the MRI and point out what features he is looking at. No doctors have offered to do this to date, and I kinda wanted to see him explain what he was looking at. What I thought was the tumor he explained was a fluid-filled void left from the surgery. This left me very confused because I was told in no uncertain terms by the surgeon that he only took a biopsy and resection was not possible without compromising functionality. Then he showed another picture that he explained was the diffuse part of the tumor, and he explained this is where the look for new tumors to form. I could not see what he was talking about and he said that the resolution on the MRI is poor and to get better resolution the magnet on the machine would be too small to fit my head in. I have looked through ALL the images (several hundred) from every MRI I have gotten and there are much better pictures that seem to show where the problem is - but who am I to argue? If you have been following this blog, you know I went into this journey with a general disdain for the medical field. Its not getting any better. I have always felt that doctors will agree with anything you complain about, assign it as a condition, and treat you for it to keep the medical machine running. I wonder where I would be today if I never complained about my dizzy spells.....
I asked the doctor to show me the MRI and point out what features he is looking at. No doctors have offered to do this to date, and I kinda wanted to see him explain what he was looking at. What I thought was the tumor he explained was a fluid-filled void left from the surgery. This left me very confused because I was told in no uncertain terms by the surgeon that he only took a biopsy and resection was not possible without compromising functionality. Then he showed another picture that he explained was the diffuse part of the tumor, and he explained this is where the look for new tumors to form. I could not see what he was talking about and he said that the resolution on the MRI is poor and to get better resolution the magnet on the machine would be too small to fit my head in. I have looked through ALL the images (several hundred) from every MRI I have gotten and there are much better pictures that seem to show where the problem is - but who am I to argue? If you have been following this blog, you know I went into this journey with a general disdain for the medical field. Its not getting any better. I have always felt that doctors will agree with anything you complain about, assign it as a condition, and treat you for it to keep the medical machine running. I wonder where I would be today if I never complained about my dizzy spells.....
Friday, June 17, 2011
Still Feeling O.K. on Friday
I did start taking 2mg of the decadron EVERY MORNING. I was not quick to judge on the effect of the decadron on my well being at first, but I have continued to live headache free and have a lot more energy and focus. This is great for getting things done at work and around the house, but sleeping at night is a problem. I started taking 1/2 of an Ambian 12.5mg CR at night to help this. I think I found a balance I can live with.
I have learned to take the doctors' side-effect Rx's as 'guidance' and slowly tweak it, giving each change a couple of days to sink in. Be an engineer when experimenting - only change one thing at a time and check results before trying something else. I hope this post will help others going through a similar situation. Disclaimer - This blog is a description of my personal experience. I am not a doctor or offering any medical advise to others.
Have a nice weekend.
I have learned to take the doctors' side-effect Rx's as 'guidance' and slowly tweak it, giving each change a couple of days to sink in. Be an engineer when experimenting - only change one thing at a time and check results before trying something else. I hope this post will help others going through a similar situation. Disclaimer - This blog is a description of my personal experience. I am not a doctor or offering any medical advise to others.
Have a nice weekend.
Wednesday, June 15, 2011
Best day in Months!
What a contrast. I went from thinking I was having a brain aneurysm yesterday to a symptom-free day today. No headaches, good energy, and was able to focus all day. It was nice to feel normal. Even better it is great to know it is even possible during these times.
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