Went to Casa de Fruita this weekend all last minute like. My packing skills have returned - I had everything I needed even though the Faire didn't like my pirate costume. Oh well too bad for them it's all that fits me right now. I am still losing weight, but very slowly. At least that means it will stay off. Had a seizure on my way up the 5, but none the rest of the weekend. Got to dance, hang out with my friends, get some time in the sun, it was great. Found out a friend of mine has been on Provigil for 1/5 years. This is a drug that my neuro psych has mentioned putting me on to combat fatigue and depression and increase my cognitive skills. I see him tomorrow and am thinking about giving it a try. It certainly can't hurt. Hal says it works pretty well for him. He has MS and fatigue is a big issue with him.

It's nice to know that the dances are still in there along with the muscle memory. Felt good to move around and be of some use to someone. I feel like such a liability lately with no income and having to be driven around and all that. Phoey.

Had a seizure today, but my last one was 21 days ago. That's a new record for me! COOL!

No rash, very little nauea - the drug cocktail seems to have worked out well for me this time. I am more tired than before, but the nurse warned me that the anti-nausea drugs might have that affect. Not having to deal with nausea is a huge plus with this round. I don't think I could have stood another 30 days of that. Today is my last day of steroids. I have my compazine just in case the nausea decides to rear it's ugly head, but I am pretty confident that it won't at this late stage in the game. Woo hoo. Here's to more shrinkage of that damned tumor.

Today the neuro-oncologist put June's MRI up next to last week's MRI to show us that the tumor had indeed gotten smaller in a few places. So much for me deciding not to do chemo anymore since it's working. Armed with a new plan of attack for the nausea and the rash, we start cycle III of temodar Friday night. It was either that or try a different oral chemo or radiation, both of which have permanent side effects which just don't sound like a good idea. Since I already know what temodar does and now have new tools to combat the side effects, I am more willing to try that again than start anew with something else. Doing nothing was ruled out since the chemo is formulated to attack fast growing cells first and it had attacked part of the tumor which had not been biopsied. We really have no idea what that 40% of the remaining tumor is made up of so best to get rid of it now that we've found something that is working.

Also saw an alternate Neuro psych doctor. Interesting fellow, but he had some new insights and some good ideas. Wants to do some additional testing for some benchmarks that we can retest later to check my progress. Sounds good. Will see both docs in a month. He exhausted me today just by talking at me for 2 hours and 45 minutes so we couldn't do any testing today.

 

I lost 10 pounds - yay!

I have a nasty rash from the chemo from my thighs to my toes that itches uncontrollably - boo! The pharmacist says I won't be able to take this type of chemo again because the next reaction will be much worse and I could end up not breathing because of it. As far as I know, this is the only chemo for brain tumors, so...

So now my legs look like I tried to shave them when I had goose bumps. And the benadryl is not helping at all. Oh, and the other anti-nausea med isn't working either. So much for change.

Happy Summer...

Dr Cloughesy's office called this morning (neuro oncologist) and said I'm good to start cycle 2 of temodar chemo tonight. one liver test was lower, one was higher, but everthing else looks good. Here's hoping the alternate nausea med works - keep your fingers crossed.

I try not to write when I'm feeling so negative, but people keep asking me what's up so, here goes....  I weigh almost 200 lbs and in spite of going off the steroids, I have gained weight becuase the chemo has made my liver very unhappy and is causing me to retain water. I have hideous stretch marks on my hips from the steroids. I am growing my hair back, but more slowly than I'd prefer (what else is new?) Looking forward to Casa Faire where I can dress like a pirate and be ornry. ARRRRRRR. Just remember - I was dressing pirate long before all of these movies started being produced. I am in no way to be confused with being trendy.

Saw the neurologist today and had to fess up to decreasing the meds and going off the steroids. He actually seemed somewhat amused by it and said he was pleased that I was able to get off the steroids and still have less seizures. As we were talking about our next visit he said, "what would you like to do, because if we all agree, there is more likely to be compliance on your part.." dig, dig. hahahahaha. Anyway, he seemed genuinely just happy that I am not having seizures every 45 minutes and that I did well on the chemo and am generally feeling better except for the nausea. He gave me compazine to try to get rid of that and we're going to try a different anti-nausea med with the 2nd round of chemo (assuming the blood tests next week show that everything is a go) and see if that works. The Kytril certianly didn't do the trick and my insurance company was very stingy with it doling out only 2 pills at a time for $30 each time. So, I will talk to him next week about the blood test results and what dose of chemo round 2 will be (round 1 was 300mg per day for 5 days, round 2 will probably be 400mg). My last seizure was on 7/7, and the one before that on 6/29, so I am hopeful that the chemo is helping. We will find out for sure in aobu t6 weeks when I have my next MRI and return to the neurologist.

Took my last steroid yesterday. Just in time cuz the nausea from the chemo started kicking in yesterday. The summer heat isn't helping much. At least now I will be able to start dropping a few pounds a week so I won't a)look like such a cow and b) feel like I'm carrying around a cow. c) start fitting into my clothes comfortably again. d) get back on my regular healthy almost vegan diet and whip my cholesterol back into shape. e) start exercising more. Can't wait, can't wiat, can't wait.

Went to the eye doctor today. All good news - Lord knows I don't need any more chicken little's in my life right now. My dad and brother brought my desk back this morning, so my spare room is now complete and I can finish organizing it into something that makes sense. I have already moved my computer in. Just have to rearrange the rest of what's in there and get the printer moved in and I'm set.

My boss has asked me to do some work from home and actually hooked me back up to the network, so that's promising. I didn't have time to do anything this morning before going to the doctor and when I got home I coudln't get on the system ( of course), but I am documenting my hours and when the system is unavailable to prevent any problems or misunderstnandings. He did not give me a deadline for this particular project, but it is clear from his questionsing and him telling me that access is only available until 5pm that he wants it done asap. Monday I have no appts, so I should be able to make a big dent in the project assuming the access is working.

Go figure I would voluntarily take a drug that is so potent I had to study a couple of hours for in order to take, but it's time to start shrinking da tumor. Finally figured out that you take the anti-nausea drug 1 hour before the chemo drug (along with the steroid and anti-seizure meds after dinner has digested). My insurance only approves 2 anti-nausea pills at a time (isn't that convenient). So I have to re-order them in the middle of my 5 day chemo runs even though I have all of the 5 day doses of Temodar for the next 3 months.

Then Jim wanted me to stay up and about for another hour to make sure I was going to feel ok. So far, so good. No nausea. No dizziness. Nothing different so far. I am a little tired, but I have been working on the house a lot the past few days and I don't think that I slept very well last night. My teeth feel a bit loose. Must have been grinding them. Brain Tumor? Stressfull? No! Jim wants me to go to work with him today, but I have an appointment with Dr Cage (Naturopathic Doctor) at 2:30pm, so not sure how that will fly. If someone can drop me off there, I can walk home. It's not easy, but I can make it.