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NEDenise Downer Alert!
Hello friends,
Well, it's a case of SSDD... Same SYMPTOMS Different Day... in my case.
I'm still suffering from being waaay off balance when I stand up or walk...
My hand and arm shake when I try to use them...
My speech is still "weird"... not slurred exactly, but not right either...
And the MRI shows no reason at all for any of this.
On a better note... the visual symptoms have receded...
but have been replaced by great fatigue, and a mild headache. (Since last weekend, I've averaged about 16 hours of sleep each day... WHILE on steroids!)
I know I should be grateful... and to some extent I am...
that the brain MRI shows nothing new or tragic...
but...
feeling lousy all the time is really starting to eat away at that positive outlook,
and getting on with life attitude,
that I've enjoyed throughout this mess.
And, the fact that none of the medicos can tell me why I feel this way is sorta disheartening too.
The current plan is to start weaning the steroids slowly... again...
but I'm not convinced that's going to help.
I'm willing to try, but I wish I felt better while I was doing it.
The thinking is that my adrenal glands are not functioning at all right now, and I'll feel better when they kick back in. We tested my thyroid function, and thank God that seems to be okay.
I felt reeeeaaally bad last Sunday... but have felt a little better each day since then. Maybe things are looking up after all.
Thanks for letting me "whine" and be weak for a while. All prayers and encouragement are welcome. Down to 7mg/day of dex... let the weaning (and whining?) begin!
Love to all of you... especially to those of you coping with way more than I am... and doing it much better than me right now!
Denise
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
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