In The Pits Steroid Hell

• It has been 4 +years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• It has been 4 years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• I have completed 7 rounds of Temodar chemo and completed my third round of a new chemo avastin last  Wednesday.  I have been on the steroid decradon for going on four weeks now, it's not as high as they want the steroid but it's plenty high for my blood. I'm hoping to continue to wean off the steroid since i really feel mostly normal other than the steroid side effects.  Beyond  that, I just want to feel good again for awhile.  I am certain when i get off the steroid I can do this. I will have to see what my oncologist says next time.  i really just want a break from the steroid mentally and physically from the seroid.  mentally more than anything.

If it weren't for still being on the steroid, I thik i'd be doing really well today.  I just finished speech therapy and it was a good day for it.  Now if I can get off the steroid i think I would be feeling much better but I wILL NOT COMPLAIN ABOUT IT RIGHT NOW.  I would just love a few weeks break from it to feel strong once again.  Therapies have begun and so far so good.  WIll have better idea come Friday when my next therapy begins with PHysical.

medically - I would say that physically, I"m as strong as as I'm going to get while on the steroids.I've starrted seeing the decline in my physical  conidtion and less improvement.  I need to be sure to tell my oncologist I've leveled off and seem to be getting worse instead of better.  I would say that's a sign the steroid has done all it's going to and the rest is up to me and my body to deal with.  I know that many doctors, including my docs at Mayo, feel steroids are good, I would normally go with them but at this point I'm seeing less improvement and more decline so it's hard to honestly believe they are doing me any good.

Emotionally - A decrease in my steroid has assisted in decreasing my manic episodes by a hair.  I still seem to go to sleep begging God to take me.  I fully believe this is the steroid, it's exactly what happened before when I was on this steroid.  I would much rather not be here than deal with the mental state I'm in.  please don't think of me as selfish for feeling this way.  It really is the steroid that makes me have no hope.   Why my doctors can't see what is so obvious to me, I may never know.  Maybe they just reallydon't believe what I am telling them.  I just feel that no amount of improvement is worth whaT i m currently experiencing.  ANYONE that knows me, has to be seeing what it is doing because I AM NOT AMY, RIGHT NOW!!!!

Mentally - anyone that knows me, knows that I am the furthest thing from a quitter.  Therefore why is it so hard to not quit right now, mentally, if not for outside influences like the steroids?  I don't believe I've ever struggled as much asI am right now.

Family - season is finally slowing down for John so that should ease some of the burden from him until I can drive again.   Hopefully that time will come real soon although, I have t get off the steroid and through some more therapy before I'm ready for that.

Therapy - SPeaking of therapy, it seems to be going really well.  I have had three or four sessions of speech therapy at this point (working on memory mostly but very important work.  I've made huge improvements already.  I can actually remember things up to 20 minutes from now.  Should be interesting to see where that one ends. I may even end up in bettere position than before I got sick.  ANyone that knows me knows my memoy was never my strongest suit.

ai have not yet met with either the physical or occupational therapist but that will start this week.  I look forward to seeing what physical therapy does with me and hope that it can get me off this steroid before I lose everything I've still got.

I think the guys just pulled in so I'm going to wrap this up now.

huggles,
Amy

Update - One day At A Time

• It has been 4 +years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• It has been 4 years since I was diagnosed with what was believed to be a benign brain tumor.
• It has been more than three years since my first surgery confirmed it was a malignant tumor not benign
• I have completed 7 rounds of Temodar chemo and will have my third round of a new chemo avastin on Wednesday.

Medically - We will know more in a few weeks what improvements if any are taking place ( I will be getting another MRI at that time.  MY counts are very low at present thanks to the steroid, however, today at least,I am feeling fairly well other than fatigued.  Hoping the swelling in the next MRI Is was down so I can go off the steroid and just go on the chemo.  That would make m me feel 100 times better!!!!I am improving in some areas but it's hard to judge because of the total body weakness caused from the steroids. 

Emotionally - Being trapped at home due to not being able to drive on the steroids has got me the most emotionally down, I think ive been since diagnosis.  I'm trying hard to stay positive but there's not much ot look forward to at the present, especially when th steroids have you feeling so crappy you can' expend much energy to anything positive.  MY counts  were very low yesterday so that doesn't help and not driving is a bigger emptional toll than you realize.  Not that I would be safe or attempt being brhind the wheel right now.   I might be emotionallly down about it but I'm not stupid or suicidal either one!!!!

Family - Just conituing one day at a time.  My son is enjoying high shool, JOhn is finally wrapping up harvest, and with a little luck i'll keep improving.

physically - My leeft side weakness is getting better by the day, however the reason for improvement is still out in the open in my eyes.  The doctors and certain family members think it's the steroids, I think it's the chemo shrinking the blood vessels effectively reducing swelling and that the steroids are just a nuisance i'lI have to put up with a bit longer.  They have been lowered again and I am feeling better so I hope that's enough proof to go off of them next week during my nExt treatment.  Besides the steroids, not the chemo, are hurting my counts.  UGH!!!!We are hoping I am right in ths case. I'm having a good day today, but I refuse to believe it's the best I can hope for.  I'm not ready to be out of this game yet.  

Mentally - In a week when things were only so/so, I did get some positive news on the mind front.  according to some neuroogical testing I'm doing, despite what feels like a major loss in my mental abilities, I am still testing quite accurately compared to what   I was prior to everything happening to me and even high compared to normal.  ai have beeen reassured that, depsite current issuew is shouldn't give up on my my learning dreams.  There' no reason I shouldn't be be able to return to some capacity at some point.  It's going to take more work on my behalf but it's not out of the question.  This is a huge moral booster because I was seriously beginning to think that a lot of my future goals were shot at this point because of being unable to transfer from short term memory to long term.  I guess the iss isn'tbas bad as it appears to me, I'm just used to things coming easier to me is all. 

Ok, I'm going to go warm up in a bath, I will talk to you all again soon and hopefully not so far between this time.  I just haven't hd the energy until now to give a proper update, aslthough short updates can often be found on Facebook if you have me there. 

http://www.facebook.com/dreamcatcher79