Tuesday, June 2, 2009


this is an interesting day. with mixed emotions.

as of tomorrow, it will be one year since my last round of chemo. yep. a whole year. 12 months. 52 weeks. three hundred and sixty five days. i was told that i would never be able to go more than 2-3 months without the poison until these diseases prematurely take me outta here.

once i realized that chemotherapy, in some form of regularity, be it a round here and there, or during health crisis, weekly would be a part of my life, i set out determine for it not to be. i began setting little chemo goals in two month increments. and yes, i'd really push it. go as long as i could. yes, there were times when i should have hooked up to my port sooner. yes, i'm sure i probably made myself sicker just because i was trying to 'wait it out'. oh well. i belive the body can heal itself if you give it a chance.

anyway, i can't tell you how excited i am. it didn't occur to me actually til last week at one of my many, many regular doctors appointments - the rheumatologist, the cardiologist, the oncologist, the pulmonologist, the neurologist. hmmm ..... feel like i'm forgetting someone.... oh yeah, the good 'ole internist. at some point, at one of those visits, it dawned on me. the feeling that overcame me is one i don't have words for. i can't describe, but will try.

it feels like i've won something. yeah. that's it. just that .... i've won something. i always thought i'd want to celebrate. like in a big way. but i don't. and i've been chewing on the why of it. then sunday it occured to me that it's because i'm really not outta the woods. i could have some kind of episode, or labs could get really funky, and then off i go to get hooked up again. trepidation is keeping me from wanting to celebrate. and i want to celebrate. i should celebrate. but....

fast forward to today. i had an assessment today for a fancy new fangled form of physical rehab therapy that i was really hoping would be the answer for me. it's called bioness and involves electrical stimulation to various parts of the body to help your gait and get your mobility back. to recap again, the disease moved to my brain now and i have seizures, which effect me like strokes, which has somehow interrupted the communication between my brain and certain parts of my body. so the right side of my body is very difficult to move. i also have severe drop foot, among many, many other issues.

so what happened? sadly, i was turned down. i've got too much stuff happening. on the surface, it really seemed like i was an ideal candidate so my neuro, hubby and i were all geeked about it. but nope. not gonna happen. apparently the electric stimulation to my central nervous system is just too much for my poor little body to handle. i began reacting almost right away - i began tremoring, and eventhough the gadget was hooked up to my right leg, i was feeling it in other parts of my body because the signal goes from where the gadgets attached, to the brain, then back again. but i was insistant on pushing through and getting up to walk. i was gonna walk! ( i have several pairs of 3 to 4 inch heels that are depending on me!!)

i deteriorated quickly and began having issues with my heart, and then had what was probably one of my siezures, but different though. it was all very unusual, and i'm still feeling the effects. it was not to be and it was all i could do to not cry while waiting for the elevator with juan.

so maybe i will celebrate. yes. i will. just don't know how. suggestions? i want to, need to get this taste out of my mouth. taste of bittersweetness.


be well, because i am ;p