Sunday, February 28, 2010

health update

hey there,

ok, i'm starting to come out of my 'chemo funk'. yes, i'm back to it ... again. i've been having "disease activity and increased symptoms" in my brain so the doc's (my neuro and oncologist) want me to do this plasma and marrow transplant thing that i can't even pronounce - i swear i feel like they make stuff up just for me! i know part of it is something like 'pharesis'. my other doc's (pulmo, cardio, rheumie) wanted me to wait and have a few rounds of chemo first, mainly because they are concerned that the procedure will jeopardize the hard won stability of my heart and lungs. so the second gang of docs are of the 'wait and see' approach with chemo - additional drug to the cocktail and a larger dose - to see if these rounds will get my neuro stuff under control. if not, then that funky sounding plasma/marrow thing. i'd have to be in the hospital for about 6 weeks and the procedure would be sandwiched between chemo treatments.

this round wasn't as bad as the one two weeks ago. that one? OMG, i just wanted to flush myself down the toilet. i don't think it's ever been that bad in all the 4 years of chemo (off and on). but then this round i've been taking the anti nausea drug zofran and in a much higher dose. i've discovered that it makes me high, so i haven't been feeling the effects so much! am i sick? yep. can i keep food down? well, better than before. tired? yes, exhausted! but it's still waaay better than the last round. and i'm actually looking forward to eating!

so the fight continues. i continue to fight.

be well :p

Wednesday, February 24, 2010

i'm back. no, really...

hey there. yes, i'm back.

had to take a break and i have no real reason for it really, other than my issues with truly exposing myself in this type of platform. interesting. i have no problem sharing myself, but i am very particular about with whom i do. and i don't like sharing me in any way that leaves me feeling vulnerable.

that's a feeling i'm still trying to get comfy with. you see, i'm the go to person, and that doesn't require me to reveal myself in any meaningful way, unless it's of my choosing. so that puts me at an unfair advantage, get it? also, and this is key, because self disclosure is not required of me during these exchanges, i've gotten comfortable with not doing it.

don't get me wrong. i've got exceptional interpersonal communication skills (hence my thriving and fulfilling life coaching practice - site still under construction!), and can bare it all without hesitation. well no, there is hesitation. there's always hesitation. because there's the possibility of judgment. and who likes that?

i'm blessed with having a way of making people feel connected to me in a very personal and intimate way, so they tend to share everything with me. and sometimes it's more than i need to know. you know what i mean?? i hope that doesn't sound mean because that's now how it's meant. i continue to be honored by the fact that people feel able to confide to me in such a personal way. i treasure that and hold it sacred.

it's just that i'm struggling with this type of exposure, and it's taken me by surprise. so bare with me as i add this to my list of things i'm working through.

as for everything else....

my family is doing well. ladybug is growing like a weed... literally! to see her now you'd never believe that she was a preemie. she's still an amazing sweetheart - easy and easy going, helpful, gentle, caring, empathetic, with an incredible sens of humor and timing for it. now don't get me wrong... she's still an 8 year old kid and has now entered the phase of juan and i having to tell her things over and over and over and over again. basic stuff! "did you brush your teeth?"; "wash your face?"; "did you finish your homework?"; "do you have your clothes ready?". she wonders off into 'la-la land' and sometimes you can actually see her leaving, lol! i sure do hope this is just a phase!

juan is hanging in there. just got a new position at work and he's not too happy about it and neither am i. it seriously cuts into his flexibility and ties him down to the office which is not his thing. and when he's not happy at work, then we're not happy at home.

my extended family? on my daddy's side they're just as fantastic as ever. i just love them! now mommy dearests side, well, there's been alot of drama since november. i'm still shaking my head over it. and it all has to do with mommy dearest. well sort of. my beloved granny passed away (maternal grandmother) and we buried her just 2 days before thanksgiving. and all throughout, mommy dearest showed her ass. and really... that's a whole different post. and i have to post it because i've got to get it out of me. so stay tuned for that one, maybe tomorrow...

now on to my health. well, hmm, let's see... i'm still here!! i've had some ups and downs, and right now, i'm having some downs. actually i'm blogging to you from the hospital while getting day 2 of round 2 of my chemo treatments (cytoxan today...yum! - NOT!). but i'm just about done and hopefully this will do the trick!

so with all that said, what have i been up to? well, with all the drama with mommy dearest and my granny passing, juan decided that we three desperately needed to get away as a family, so we escaped to beautiful lake tahoe. just the three of us. and it was so fabulous! we had 4 days of giggles, good food, relaxing, more giggles and outright gut busting laughter, more good music, some snow (not very much thankfully for driving!) and great weather. and yes, that's me on that inner tube!! i drove juan crazy because he said no, and then i did it anyway!! he was pissed but it was sooo worth it!! enjoy the pics!

then juan surprised me for my christmas birthday with a trip for just the two of us to chicago!! i know, i know... chicago? in january? well yes! and it was FABULOUS!! i just LOVE chicago. the food, the people, the shopping, the people, the food! our hotel was just behind oprah's apartment building there by the drake hotel. i've been there before on many occasions, usually for work though, and have always liked it. i have an uncle and family there. but for some reason, on this trip... i fell in love. i mean deeply in love. new york has always been my luvah, france my divine and ultimate mistress - no one to come close! but now i feel like i'm cheating on them with chicago. and it was so hard to choose which pics to share with you, because i love every one!! sorry...well, enjoy! (ps... had trouble with sizing the pics, not sure if its user error or blogger, so here are some of my chicago picture comments: from top to bottom - that's us heading out for the day, and yes, it was cold!; we walked up and down the gold coast doing one of juans favorite things - shopping for me (i could care less really, give me some food and a good bottle of wine!) - and i guess i should be happy about that. he loves for me to wear nice things. now i did find a pair of killer purple anke boots at brooks brothers and i almost single handedly bought them out along with many boutiques, which i prefer, such as Ikram, Ultimo, and Calypso Christine Celle.then moved on brooks brothers, j.crew, kate spade, and saks where i could fine some of my faves like celine and carolina herrara. but honestly, i really don't like to shop. really. i just extremely admire nice things... thanks daddy and mommy dearest, and now juan :)
it started snowing so we than moved on to the famous giordanos pizza and honestly, we've had better (slanderous i know!), maybe it was the location? or could it have been the fact that i had my wheelchair and they acted like they really didn't want us there because if it. maybe if i had brought my own tricked out set of wheels? just sayin'....; speaking of wheelchairs, i was so ticked off that juan made me stop in the middle of our march to get out of chicago cold, windy snowy night while i was hungry, to take a daggone picture! but anyway, the food overall was just simply amazing!! that alone deserves it's own post!! i have only one regret - i didn't get to go to a cupcake restaurant (i can't think of the name this minute, it's late and everyone's upstairs sleep) because i had had a seizure and juan was not letting me outta that hotel, so he and my uncle went and got some delish outta this world goodies, but didn't tell the guy that i was a good friend of babz!! UHG!! he promised me a second trip back just so i can say hi to him (darius i think). the next day was filled with sightseeing around town and omg was it cold! the high was 26*. i know, that's nothing!; our last night there we spent having late snacks and nightcaps at the observatory in the john hancock building, and it was just magical! as cold as it was, i really didn't want it to end..... sigh

be well