STRUGGLING

The wife of an extremely good friend of mine, Corey - my brother really, passed away unexpectedly the other day, and I am just shell shocked.  

Dear, dear, sweet Allison Clark McDaniel.  

He is my Morehouse Brother. We’ve been through a lot together, grown together, for almost 25 years now. And she my Spelman Sister. They were perfect for each other. Both Class of ’91. Two young boys, the oldest barely a year younger than Ladybug.

She had a seizure in her sleep and just never woke up. Dear Corey found her when her when he went to wake her.

I’m heartbroken. 

Allison began having issues, mainly seizures I believe, a couple years ago and I’m not remembering all the details, but it seemed that they eased for a long while, then kicked back up again a few months ago. She and I talked several times about it over the last year. I don’t think the doctors knew just what was going on; she and I had talked about it several times over the last couple years… she had doctors’ appointments scheduled to begin to find out the day she passed.                     

Struggling here. Truly. Deeply.

I’d almost gotten used to the thoughts and ideas of how it would be for Juan and Ladybug if my diseases run their supposedly inevitable course. Of the news that yet another Lupus/Cancer Warrior whose lost their valiant fight. To the routine of living with the real, up close and personal threat of death…. Like background noise. I have found a way to get on with and lost in my life – the activities of living, managing the minutia, and all that that means, especially with a very active 14 year old, and finding ways to live the way I want to live in spite of.

Til the news of dear, sweet, Allison.

I am wrestling with, really struggling with the fact that I am quite sick. The rheumatologist, the cardiologist, the hematologist, the oncologist, the pulmonologist, and the neurologist seem to delight in reminding me of this on a very regular basis (especially lately). That I shouldn’t be here. That not only should I not be here, living, but should not be functioning as I am. Living as I am. There are so many people around me who supposedly aren’t as sick as I am, don’t have the same severity or level of disease and disease processes, aren’t officially labeled ‘terminal’, and many who clearly look sicker than me… yet die. As a very logical, 1+1=2 kind of person with a deep need for things to make sense and add up, I am unable to reconcile this.

Why? People say God has a plan for me and my life. That there’s work for me to do and people to touch through my testimony.

Honestly? This scares me. Between you and me, I don’t feel worthy. As much as I try to be – staying positive when all I want to do is burn some sh*t down because of the constant pain, my inability to do things like button/zip up my shirt, having to pick and choose what I will do because ANYTHING I do requires an inordinate amount of energy (that I just don’t have most of the time), struggling to remember basic things; by being as pleasant and sweet as I possibly can be to medical staff.

I feel guilty actually. Especially, particularly now.

I suffer from seizures also due to the trifecta of diseases that have descended and attack my brain and central nervous system. They’re definitely better now, but there were times when a good day was 6-10 seizures every day. But again, they’re better. We actually know why. We didn’t yet with dear, sweet, Allison.

She’s gone, I’m still here.

Why? And I just don’t how to reconcile all of this. I get that it may not actually be for me to get. That there’s clearly something bigger at play here than what my ridiculously inept mind is able to grasp. I really want to say something profound and deep, but I just can’t. I am fighting this urge, desire, need to figure it out. I feel I need to so that I can carry on with the fight on for Allison and all those who’ve lost their battle; that I’ll have purpose. But do I really need to understand why I’m left, why I’m still here, in order to continue fighting, living?

I’m struggling here. I really am.

Be well family ♥

MAY IS LUPUS AWARENESS MONTH

Greetings Family!

puffy face from all the medication

during my last visit in Jan.

Many of you who follow me/my blog know that I have been surviving and living in spite of lupus, among a few other things that may actually seem much more serious. But, had it not been for lupus, I wouldn't have all the other diseases and issues.

lupus is a bitch. Truly.
(yes lowercase, this bitch doesn’t deserve proper noun status) 

I’ve had a few good years with only a few minor hiccups, and absolutely no chemo – actually, November 2015 would have been 3 whole years!! But you can always count on that bitch to act up at the most inopportune times. And she did. Just as I was ready to celebrate 3 years chemo free and claim the oh so coveted tittle ‘REMISSION’. But nope. Not only did that bitch show up, but she decided, as usual, to put her own twist on things.

The new hiccup - my blood ‘disorder’ is now a full blown disease of its own where I bounce back and forth between not making enough platelets (meaning if I fall or get cut, I won’t stop bleeding because my blood can’t clot), and creating too many platelets which means my blood clots too much (and in all the wrong places, which can kill me). This has happened before with my lungs. My heart. My brain and central nervous system. My connective tissue (muscles). My bones… sigh.

Unfortunately this is an all too well of a traveled road for me. And dear Juan. And dear Ladybug.  

this is how much they're SUPPOSE to take every 2 weeks

You see, lupus is a disease where your body’s own defense mechanisms, the very things that exist to protect you, turn on you, and see you as the enemy. Well at least your major organs and systems that are usually essential to actually living. Breathing. Moving. Living. I’ve had a catheter port in my chest for years, and it has finally stopped working, thanks to that bitch lupus. Through both my blood disease and vascular disease (my veins, arteries, vessels, and capillaries), it attacked my beloved port and I now no longer have what’s called ‘central access’, which for me is a critical situation. Why? It’s the only means of access, meaning it’s how all lab work is drawn, how I received fluids and medications, including chemo (which I was supposed to have started back in November – yeah, my docs are quite anxious, and this time it’s not my fault.. at least directly). Without going into too much detail at this moment, let’s just say it’s a damned if I do/damned if I don’t scenario. 

So now it’s time, once again, to suit up, pray hard, and head back in to battle. Man. I’m outta practice actually. I’ve been livin’ large these last few years. I think I’ve turned into a bit of a punk. But, like me, there are so many out there living with lupus. And doing it WAY better than I am. So who am I to whine and complain? Right?  

For more information about this bitch, please go to the
Lupus Foundation of America.

May is lupus Awareness Month. Trust and believe that someone you know has lupus. 

I have lupus.

please know, that some one you know....

whew! and yes, again, it's been a while! but i have been busy and in a good way. my health you ask? well, as with everything - there have been ups and downs, but overall - I"M STILL HERE!

MAY IS LUPUS AWARENESS MONTH

LUPUS is an awful disease that has no cure and, in its worst form, is just as devastating as cancer. i know because i have both, along with a few other critical and life threatening auto-immune diseases. and this may sound crazy, especially because we think of cancer as this alpha/omega of diseases - that there's nothing worse. but i find that my LUPUS (and the LUPUS of many others i know in this fight), is worse than my cancer. although there's no definitive proof of this, we feel that the LUPUS opened the door to my other diseases.

my LUPUS causes so many problems for me, way more than the other diseases. it affects my heart, my lungs, my muscles, my brain. i have other issues with these same organs (cancer, pulmonary fibrosis, vasculitis, MS, mixed connective tissue disease), but the LUPUS is all encompassing, ever reaching. it keeps me from driving, working 'officially', making and keeping engagements - both personal and professional, from crafting and cooking, from doing things with my ladybug, my friends, my family, and myself. it keeps me from finding my words and understanding those spoken to me, from keeping up with and enjoying my favorite tv shows and books. it keeps me from rocking my favorite pair of 3 inch heels and hanging out in the sun for as long as i want. i never know how i'm going to feel, or be every day that i wake up, and from hour to hour. i'm in constant, constant pain... pain that you can never get use to. on a scale of 1-10, with 10 being the worst ever, 6 is a good and regular day for me. and the seizures..... they rob me of so much too.

it's unpredictable nature keeps me from counting on myself in a way that's just so basic to most people, and i can feel it slowly yet aggressively trying to take away from me my confidence and my audacity to truly LIVE in spite of it. and i hate it. i hate what it's done to me, my body, to those who love me, what it continually tries to do to my life.

this is a horrible and insidious disease that has no cure and can kill. it strikes (mostly) women from all backgrounds, races, and walks of life in the prime of their lives - as they're just finishing school, staring a business, a family, a new relationship, an exciting career or adventure! this disease turns lives upside down and havoc descends, yet there's little to nothing in the form of support, resources, and major awareness out there for those suffering from and living with LUPUS. especially in the medical community - so many go mis or undiagnosed.

because of this, and my own frustration with the lack of services and programs, i have started a charitable non profit specifically for women at risk, the newly diagnosed, and warriors living with LUPUS here in my area = THE BUTTERFLY PROJECT for LUPUS. my goal is for this to become a national organization. we are currently registered as an exempt non profit corporation here in california, and are awaiting our federal exemption status at a 501(c)3. we're working on our website now and it will be up soon (www.thebutterflyprojectfoundation.org), as well as the rest of the details, and i will keep you posted so stay tuned!

this is LUPUS AWARENESS MONTH, and someone you know has lupus. please donate and find out more about how you can help those of us with LUPUS by going to www.lupus.org

be well :)

yes, i've been away... and a happy turkiey day!

i'm so sorry everyone. i've been away, and it hasn't been too good. i've been struggling with my body, trying to get it to understand that it's needed, wanted, very much. doing my best to let it know just how respected, admired, and loved it is. 

i've been in the hospital for the last 5 weeks, with a previous 2 weeks before this spent in isolation. what's going on with me? it's been a long and drawn out journey, too complicated to even bother to explain at this very moment, but worth doing, and i will. however, just know for now that 'this time' it involves my central nervous system (brain), lungs, and the docs were having a tough time getting things under control. it was a step shy from 'touch and go'. 

poor juan, he was doing all he could to figure out what our options were, with both of us being highly suspicious of 2 medications that we felt the side effects were causing some of the issues they were wanting to 'treat'. and unfortunately, i could only participate so much because of the state i was in - incoherent, going into/coming out of seizures. i could feel his frustration, understood it, wanted to ease it. but couldn't. i had to let him work it out on his own. he wanted me off certain meds NOW, but that wasn't feasible;l he was indignant with the staff and docs, it was interesting for a while. but again, i had to understand that this was 'his' way of taking care of me, protecting me, in the only way he knew how.

neurologically things got really bad  really fast, so it was decided to move forward with bone marrow and plasmapharises 'exchanges' and filtration (??), i am now on the mend! where'd i get the blood and bone marrow? juan. yes, juan!!  he's my match, literally

i hope to have some pics up soon - juan keeps forgetting the camera (i think on purpose!), i may try to upload the pics from my fancy new camera!

i broke down and got a fancy shmancy new phone, or i should say juan made me do it - no, it's not the i-phone (no kool-aid drinking here!), i got the sprint 4g EVO and i LOVE it!!! i'm a fairly proficient techie, so should be up and running on this thing soon enough - i hope!  

well, please know that i'm doing much better now with a few more weeks to go. hopefully i can get some pics up i got using my new phone. 

be well!                                                                                                                           

we are always where we are supposed to be

hey y'all, 

** no, i'm not high anymore, just feeling crappy **

as you know, i wrapped up a round of chemo yesterday and am home. i have alot to tell about just that day, yesterday, but will continue with an amazingly divine encounter i had yesterday with another chemo patient. 

i bee-bopped in, as i always do, chatty and glad handing the nurses (my buddies) and any patients if there, since i usually get there early to get my favorite bed. we all know why we're there, some having their last battle, some are scared newbies, most like me - in a kind of purgatory/hell/limbo. life being held hostage by disease, with no time to mourn because we have to fight. 

so as i was bee-bopping in, i noticed a young lady, seemed young, and clearly uncomfortable, aggitated. she was on the phone at the time so i didn't get a chance to do my glad handing. as juan got ladybug and i settled in and unpacked (i'm there for 6 hours depending), i could feel that young lady's spirit. uneasy, frustrated, scared, tired. 

juan hung around and we chatted, flirted. the nursed goofed around with ladybug while she had her breakfast. then, once he left, the nurses got me re-hooked up, i got my laptop up, and ladybug was engrossed with her DSi, it was just us and it got quiet. and that young lady's spirit was raging. 

i couldn't help watching her, out of the corner of my eye mind you - didnt' want to seem like i was stalking her form across the room. i could just feel something about to happen. like vibrations. then the rage caught up and came out as the nurses were hooking her up. she broke down. 

everything in me ached for her, so i jumped out of my bed, practically ripped the i.v. pumps plugs from the wall, and some how, made it over to her bed and climbed in. the heavy petting my fantabulous chemo nurses do just wasn't enough at that moment. that young lady needed to be held. needed to be told it really would be ok, that she could let it out, be angry, tired, frustrated, scared, but that she still has plenty of fight left because she's made it this far, too far, to just give up and in now. so i did just that. then i wiped her tears, held her head as she vomited. 

in that moment, we connected on a level i can honestly say i never had before. we didn't even know each others names yet. after introducing myself, i gave her round two of my little 'stock' pep talk, let her know that she's a fierce warrior who deserves a 'break'. a 'pity party' even, but that she had to get up when done. and if she felt she just couldn't, then to call me, and that i will help her. 

interesting thing though... usually we have a full house - all four beds. but this day, it was just us two. we are always where we are supposed to be, at any given moment.

yesterday blessed me. wiping her face, letting her crawl up in my little lap, that somehow was able to hold her (i'm not called tinybutt for nothing!), those moments blessed me. filled me. and i'm so thankful. thank you april.

life is good. life is amazing. and i love it!


be well :)




and of course there's pictures!

guess who showed up, out of the blue, with treats! i love my daddy

 

look at that feast - double burger AND nuggets!

 

happy camper

nap time. isn't that MY bed?!

done with chemo .... for now

*** DISCLAIMER ** This post is a major gabfest due to my being under the influence of some, 'ah-em' heavy duty DEA Class II and a few CLASS 1 legally prescribed drugs, please forgive, lol*** 

hey y'all! i am soooo high and full of energy!! it's the drugs for sure. i always HATE day two because it's the drug from hell, (truly!), but i'm usually pumped up on steroids and some seriously hardcore pain medication so i'm feeling good (jealous?? DON'T BE), and am bouncing all over the place like an atom, and can't shut up to save my life. juan hates day 2 as well, lol! but today was particularly hard, and i had a couple of crisis, so they had to "pump me up!"

and i had my ladybug there with me all day. so i hate to have 'issues' while she's within ear or eye shot. however, she's so damn good! i was writhing in pain and trying very hard not to let on just how bad it was. she was busy multi tasking with her DSi and watching I-Carly, i thought i was faking the funk by pretending to be on my laptop. well this girl began rubbing my arm, they gently stroked my arm down to my hand and clutched it perfectly. she rubbed it while saying "hang on mommy it will be ok, just squeeze my hand if you have to, i can take it because can take it". MY GOD. then my nurse came in and she motioned to her. the nurse, Ms. Pat, new what to do and when into action. she normally asks me what i want to do, but i think she took one look at ladybug and what she was doing (and with a straight face like this for damn sure aint her first rodeo), and sprung into action. i dont' think i've ever gotten my drugs so fast, lol! i swear, i just dont' believe this kid sometimes - her grace, her gentleness and gentility, her pure and honest compassion and empathy. and it's not just for me, because i'm her mom - she's like this with almost everyone/everything that she cares about, but not willy nilly.. she's like her dad, she doesn't like everybody, but knows how to be polite - thank God, because her dad doesn't, lol!

so, i'm done with day 4, which completes one round. yep, just ONE round of chemo is a total of FOUR infusions over a two week period. fun. around the time i started this blog, i was undergoing treatment either weekly, or every other week (every two weeks), PLUS weekly labs, MRI's, scans, pulmonary function tests, lugging around oxygen tanks, blah, blah, blah.... for almost a year and a half. i was EXHAUSTED. no... EXHAUSTED. and i felt the treatment was killing me faster than the diseases! and all while trying to maintain my life as i knew it (past tense at the time). so i, yes, I made an executive decision to terminate regular and what seemed to be infinite chemotherapy treatments primarily for the caner and severe lupus (cns/multi system-sle). i told them that i needed to give my body a chance to heal itself. i had enough training to know that that's what the body is designed and programmed to do. so we would only do chemo "PRN", which means "On An AS NEEDED BASIS". we set up the parameters for me, and it required additional 'regular' testing for monitoring the diseases and their symptoms, and it's sort of worked...so far i guess, hell, i'm still here and i'm way more pain, and i may have given my opportunistic diseases a window of opportunity, i'm having a helluva a better time now than before, lol! can't beat that!

there's so much more i want to talk about, and lord knows i've got WAAAY too much energy (does it register in this post??), i'm gonna stop here and leave you with some pics of my day. don't give up, there's alot of them so i'll try to break them up over 2 or three days.

i will for sure post tomorrow because i had a most Godly and divine experience today with another chemo patient...and i'm still processing it because it was so profound and meaningful and just a compete and utter blessing. i'm still so full from it (and yes, it all happened BEFORE i got loaded, just who do you think i am?)

up and around - as always!

not a good shot of my tricked out ride. it's still not cute!

 not happy, no joy

happiness and joy

again, it was a busy day and there are more pics to come from it, so come back tomorrow ~ it will be worth it. have a good night, well a good morning - it's 2:33 am as i sign off.
be well my friends :)

not so hot

today's just ok. the yucky-ness is starting a bit sooner than i had anticipated, a lot sooner than normal. so i'm not so hot. what was i thinking, trying to blog everyday after chemo? NUTS!!!

it began with me having to rush to get up to get ladybug to day camp because hubby just couldn't make it back in time. honestly, i didn't think i could do it. but once i got behind the wheel of my beloved T5, feeling the engine hum, vibrate... it woke me up. got my brain and my spirit in the right place.

i love my car. she takes care of me. she took care of me today. got me, and my ladybug to and fro safely. before i knew it, i was back on my comfy blue sofa like nothing happened. but then the garden called me.... i couldn't help it, so i went.

and it felt good.


and now...right now? i feel like crap, to over simplify it. the nausea, the pain, the chemo fog. but it still was a great day! good night friends.


be well :)

i hate day 2...

i hate day 2. i really hate day 2. CYTOXAN is the drug of the devil. there just is no other way for me to put it. it steals my sense of smell, my taste, my hunger, my desire, my passion....it steals me. well, for about a month at least. pay no attention to that drug induced smile.

don't mind me, i'm just pissy because i can't enjoy this ice cream i so patiently waited til hubby went to bed to have... to sneak actually. i might as well be eating tin foil (mouth sores) and mud. now my once quiet stomach is beginning to churn, and the waves of nausea that are usually like background noise is getting louder. so i'm watching it melt. that's how bad it is. irony... sigh.... i hate day 2.

well, at least i'm still enjoying the little bit high left over from the great medications given as a parting gift - "thank you for playing chemo roulette, please come back soon". and thanks to one of my very, very nice chemo nurses who was so kind to slip me a several extra doses of (for me) the life saving Zofran for the overwhelming nausea and "green-ness" i experience soon after treatment. don't get me wrong, i'm still facing living hell in a few days, probably even more so because of the situation - my docs have significantly increased the doses of all the chemo drugs - so i'm scared - but the zofran is definitely going to make it at least a little bit bearable. now that i think about it... i bet ya that's why she gave them to me?! hmpf.

enough about all that depressing, boring, so not cute stuff. do you want to hear about how hubby just pissed me off?? nah.... you want to see some more pictures of my garden, don't ya?!? me too!!

these will bring you up to just two weeks ago, except for the pic of me in the hospital... that's from earlier today. lots of blooms this time... enjoy!

ps... thanks for the great feed back, i really appreciate it! and warning... i'm in love with zucchini blossoms:p LASTLY... i've got to figure this darn picture function - it can't be too darn hard, right??

chemo - round 2, day 1 & my garden

hey there,

i've gotten through day 1 of my second round of chemo this year. for me and my treatments, one round of chemo is actually 4 infusions lasting about 6 hours each, over a two week period. i go two days back to back with 2-3 drugs (depending), then wait two weeks, and do it exactly the same again. i have a 7-10 day quarantine after each infusions, so one round literally takes about a month out of my life.

the first drug they give me on day one really isn't so bad... as chemo's go, lol! they give me drugs to make me sleep - LOVE THAT! - and they monitor me every 15 minutes for the first 3 hours, then every 30 minutes for the rest. so really, no sleeping actually going on, just a drug induced stupor. but i always sleep really good when i get home...nice. i have a port in my chest so that they can literally 'plug' me up to all the I.V.'s, and they leave them attached over night. ladybug loves that. she loves everything that has to do with me going to and being in the hospital.... oh well, maybe i'll get a doctor or a nurse outta this?

no on to my garden.... (ala, the majority of my NaBloPoMo topic)

like a said, it's growing like gang busters so here's a few pics from the end of june - this is a month and a half growth! and i just had no idea how big the zucchini would get, lol! i had to chop it down, but don't worry, it's doing just fine. i hope you enjoy.

be well friends :)

SOMEONE YOU KNOW...

may (along with august) has always been my favorite named month of the year. yes, there are other months i love, but the word (or name) MAY... i love the most (again, with august).

and MAY is LUPUS AWARENESS MONTH, and this very day is WORLD LUPUS DAY.

LUPUS is an awful disease that has no cure and, in its worst form, is just as devastating as cancer. i know because i have both, along with a few other critical and life threatening auto-immune diseases. and this may sound crazy, especially because we think of cancer as this alpha/omega of diseases - that there's nothing worse. but i find that my LUPUS (and the LUPUS of many others i know in this fight), is worse than my cancer. although there's no definitive proof of this, we feel that the LUPUS opened the door to my other diseases.

my LUPUS causes so many problems for me, way more than the other diseases. it affects my heart, my lungs, my muscles, my brain. i have other issues with these same organs (cancer, pulmonary fibrosis, vasculitis, MS, mixed connective tissue disease), but the LUPUS is all encompassing, every reaching. it keeps me from driving, working 'officially', making and keeping engagements - both personal and professional, from crafting and cooking, from doing things with my ladybug, friends, family, and myself. it keeps me from finding my words and understanding those spoken to me, from keeping up with and enjoying my favorite tv shows and books. it keeps me from rocking my favorite pair of 3 inch heels and hanging out in the sun for as long as i want. i never know how i'm going to feel, or be every day that i wake up and from hour to hour. i'm in constant, constant pain... pain that you can never get use to. on a scale of 1-10, with 10 being the worst ever, 6 is a good and regular day for me. and the seizures.....

it's unpredictable nature keeps me from counting on myself in a way that's just so basic to most, and i can feel it slowly yet aggressively trying to take my confidence and my audacity to truly LIVE in spite of it, away from me. and i hate it. i hate what it's done to me, my body, to those who love me, what it continually tries to do to my life.

this is a horrible and insidious disease that has no cure and can kill. it strikes (mostly) women from all backgrounds, races, and walks of life in the prime of their lives - as they're just finishing school, staring a business, a family, a new relationship, an exciting career or adventure! this disease turns lives upside down and havoc descends, yet there's little to nothing in the form of support, resources, and major awareness out there for those suffering from and living with LUPUS. especially in the medical community - so many go mis or undiagnosed.

because of this, and my own frustration with the lack of services and programs, i have started a charitable non profit specifically for women at risk, the newly diagnosed, and warriors living with LUPUS here in my area = THE BUTTERFLY PROJECT for LUPUS. my goal is for this to become a national organization. we are currently registered as an exempt non profit corporation here in california, and are awaiting our federal exemption status at a 501(c)3. we're working on our website now and it will be up soon (www.thebutterflyprojectfoundation.org), as well as the rest of the details, and i will keep you posted so stay tuned!

this is LUPUS AWARENESS MONTH, and someone you know has lupus. please donate and find out more about how you can help those of us with LUPUS by going to www.lupus.org

be well!

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

the fight must go on

october is breast cancer awareness month and i'm glad, because we need to fight it. this is a disease that affects so many, not just women. and this is a disease that can be conquered. but only if we fight.

we must also be mindful that there are several other diseases that are in need of awareness too. that need to be fought just as fiercely as breast cancer.

let's also make the time to honor those still courageously fighting. lets uplift them and cheer them on, leting them know that we are here! i'm blessed to know some incredible people who are currently engaged in battle . they encourage me, inspire me, amaze me. and i'm thankful for them (holly, traci, laurie, miranda, catherine, and yvette).

yes, there's more, much more i'd like to say but i'm not feeling well today, and i'm not as eloquent as i would like to be. so i will leave you with a plea to be aware. be aware of your body, your health, your life. take control of them. make the time and do it now. and please take a moment to see what you can do to advace the fight against breast cancer, along with the many other cruel and vicious disease out there that snatch away the lives of those we love dearly. take a moment this month to remember them. honor them.

be well :)

bittersweetness

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.

bittersweetness.

be well, because i am ;p

here we go again...part 2?

well, here i am at 11:42pm curled up on my big blue sofa. it's the night before my surgery and i'm exhausted. emotionally. totally drained.

mainly because i am just so very tired of all this health rigamarole. shit really. it's so old now and i'm so over it. i am angry. frustrated. hurt. scared. there. i said it. yeah. that's it.

here i am again. almost exactly 6 months to the day. not as twisted really. just tired of it all. tired as in giving up? hell no. my life is too damn good. no, my life? great! yeah, i could use some work here and there. but i am just so damn tired of this all. this health rigamamarole. it's so very old now and i am so very over it.

and on top of this all, my mommy dearest is at her best. i get that she just doesn't love me like that. how a mommy should love her baby. she can't. and that's fine. tears. i want a mommy right now. tears. need comfort. tears. could really use one right now. tears. oh well.

which brings me to my baby. oh my love, so sweet yes she is. more tears. too many. so here's a portion of the post about ladybug i did the night before the first surgery back in september. every last bit of this is the absolute truth and pretty is much how tongiht went and for how i feel at this very moment.

"...so now, i'm sitting here. with nervous energy. still not packed for the hospital. blogging. thinking. about my ladybug really. my eyes are still burning. stinging from crying earlier. she's at my moms tonight because i have to go into the hospital so early, and will stay with her for a few days. so i packed her bags and took them up to my moms (she's just behind my house, practically across the street actually-don't you fuss about me driving babz!!).

i came in, chit chatted with mommy, then headed up to her room to kiss my baby. the love of my life. i found that i couldn't leave her. i sat there, staring at her. smelling her fresh bathed scent. memorizing her every feature. her fingers, the way they bend inward. how my thumb still fits perfectly in the palm of little her hand. and how she still curls her hand, fingers around it. i listened to her breath. her heart beat. i kissed her fingers. her hands. i layed my face in her hand. i touched her face. her nose. lips. eyebrows. i love how her top lip is slightly pointy and wide. and how her bottom lip is so smooth, an almost perfect long oval. how much she still looks like a baby. a baby. my baby.

oh, here come the tears. i found that i couldn't leave her. i cried. hard. i love her. and those 3 wonderful words don't come close, are not enough, to express how i feel about her... what i feel for her. i love her so much that i physically hurt to leave her. do you know what i mean? i prayed to god to move me.

i couldn't take it anymore. i stroked and caressed her face. yes. to wake her up. and she did. i needed to see her eyes and hear her voice. she looked up sweetly at me, not sure of what she was seeing, then realized it was me. she said softly "hi mommy". my heart lept, my breathing paused. i just told her "hi baby, mommy just wanted to kiss you goodnight". she asked me if i was still going to get my leg fixed tomorrow, there's something about the way she says "tomorrow". she said ok, then asked me to scratch her back. bingo! few more minutes. then, it really was time for me to go. so i said "ok baby, mommy's got to go now...mommy loves you". and she said "i love you too mommy", in that way that makes my heart just sing!!!! PAYDAY!!! so, i said "no baby, mommy loves you more", and kissed her again.

so with that, a hug from my own mommy, and with the tons of prayers and good wishes and support from the most wonderful, soulful spirits - friends, brothers, sisters, aunts, divas, and soulmates - i am armed and ready to go!!!!

let's do this....."


thank you everyone!

here we go again...

well, it is now confirmed. i have to have surgery....again. MARCH 5th. you know me, i've been trying to negotiate with the docs, but they were not having any of me and my bullshit this time. well, at least i got my way a little bit... no chemo...for now. i take my victories when, where, and how i can get them.

so what's going on now you ask? i'd like to know myself. my body just isn't able to cooperate with me. poor thing. and i love my body. always have. i like looking at it. oh, sorry... i digress.

like i was saying... i'd like to know what's going on too. yeah, the docs give me their mumbo jumbo about this cell and that platelet, this scan/mri, and that drug response. but frankly, i'm tired of all that crap. what is really going on here?

well, i'm sick. and ... i'm in denial, still. you see, i like to 'forget' that i've got some crazy, truly shitty (is that how you spell shitty? i've always wanted to cuss like a sailor) shit ravaging my body. totally fucking with my life. my life. **sigh** don't these diseases know that i'm busy trying to live my damn life? ok, didn't realize that i am just a bit angry. i had made plans for march!

i've got holes in my bones. they're disintegrating quicker than expected and now i'm leaking bone marrow. apparently that's not a good thing. at least it explains why my labs have been off a bit. it's a little tricky this one because the grafting is happening on my 'good' side, the side of my lower body that's not paralyzed. so the docs aren't sure exactly how they want to rehab me. which i don't understand one bit. don't they rehab one legged people all the time? its just that my bad leg is still attached. so what's the problem? well, at least i talked the surgeon into fixing my other hip while he's in there. looks like i'll be an inch or so taller..WHOOOO-HOOOO!!

but seriously. i'm not happy about this. not at all. and i'm scared. again. and i don't want to be. i'm sad. again. and that's not me. i'm angry. again. and that's not me either. i don't want to be 'this person'. who's sick. but i am. for now.

and this too will pass. because i said so.

be well :)

a small trip back

i've been really under the weather lately physically, and emotionally. so, since i've written about feeling this way before, and feeling the need to still write about it. i just thought i'd repost and earlier one. interesting how not that much has changed really.

i'm not on regular chemo treatments; i get them "PRN" (means as needed), only if i'm having a crisis, or the disease gets aggressive. actually, if i can go another 30 days my docs will declare me stable, but not in remission.

in the meantime, here's how i'm feeling:
~~~~~~~~~~~~~~~~~

shootin' blanks

"so i've probably filled you in on some of my health issues and health related what nots, and how i'm really trying to come to terms with just how sick i really am. it's hard. i don't want to believe that my body, and now (as of 10/06) my brain is failing me. one of the things that i'm dealing with is short term memory loss. at least that's the the doctors are calling it. short term memory loss(stml). short term. doesn't short term mean for a little while, temporary, will be over soon? well, i'm still waiting. this whole escalation of my diseases happened in october 2006. on my wedding anniversery no less. i keep hoping that i'll wake up tomorrow and it will be all over, at least the memory issue.

yes, it's gotten so much better since october. truly. BUT. i'm getting frustrated. for the most part, i can see that i've come a very long way, and am very thankful for the support and prayers i've recieved, and i know that it will take time. time. TIME.

right now i'm sick of that. sick and tired of hearing that, of telling myself that. of being patient. you see, i'm the one that's patient with everyone.... except with myself. i don't know how to be that for myself. how to give that to myself. i should know how to, right? i gave to everyone else. shouldn't it be easy? well, it's not. along with a whole list of other things i should be able to do for myself.

i 'm tired of not knowing if i've had this conversation already, asked that question before. i have to write everything down. more than twice most of the time. i was in the store the other day and i saw someone i think knew me, but didn't say anything to me, just sort of "acted" like we didn't know each other. but i really felt like we did. there was something in her eyes that gave it away. all i have is my gut feeling. i don't remember, but sometimes i just have a feeling. it's really difficult to do so many things now. things that everyone takes for granted. things that i use to just do. like multi tasking (impossible practically,lol!!), or remembering how to get somewhere that you go a thousand times. just watching a tv show is a major challenge. its hard to follow, especially trying to watch movies. its all i can do to keep up with my ladybugs childrens programming the sprout channel! (you know, barney...). like the other day dh and i were going to get lb registered in her summer gymnastic camp. i knew exactly where it was, could see it in my mind. but i could remember how to tell dh where to go, or if we were even heading the right way. hell, i knew where i was, but didn't really know where i was! do you understand? it's more than just having a brain fart. you see, i was always the go to person. i knew everything, and remembered even more. i had this close to photographic memory. reliable like the sun rising and setting. now?

i use to be very well spoken, articulate, and cogent. a pretty good, and very confident public speaker, if i must say so myself. now...?? well, let's just say that it's probably all you can do to understand me. yeah, i'm typing like all is well, but trust me! this is not how i really speak. my sentance structure and spelling is that of a kindergartener. when i talk it sounds as if i'm deaf, or from some exotic country, or speaking baby talk, depending on how i'm feeling. it's so hard now to get my point accross. to say what i really am meaning to say. in addition to stml i have a combination of broca's and wernicke's aphasia. broca's is when it takes great effort for one to talk and have problems with grammar and speak short telegraphic sentences, such as "get water". wernicke's is when it's easy to talk, but i use the wrong words, the wrong sounds, or make up words. Much of what some people say may sound like "nonsense". i go back and forth depending on what's going on - if i'm tired, in pain, having swelling in the language center of the brain (vasculitis), or had a siezure.

everytime i look at dh or my ladybug, i get scared, angry, frustrated. it's also very funny. lb will say "ok momy, i'm going to have another cup of pudding because you're going to forget that i already had one". how can i stay angry, and frustrated for long? lol! i've since had to pull a 'mommy' on her and i pretend that my memory is just fine. i let her see me as i am except that. i do not want to put that on her. for some reason i feel like she can handle my physical disabilities, heck, she thinks it's fun at times (she gets to ride in my wheelchair with me sometimes, or play with my quite fancy shmacy cane!), but worry about the memory issues on her. she asked me one day if i was able to remember to take care of her, get her milk, cheerios, etc. the look of mixed genuine concern and fear and sadness on her face nearly broke me. my god i love her. oh, and the thought of my dh. i'm watching him now watching me struggle to type this. heartbreaking, really.

how do i describe to you what its like? i'm struggling with that. can you imagine looking at a picture of you and some loved ones, and having absolutely no memery, or even a feeling of it? nothing. just blank. that's it. just blank. i think that's the best i can do. it's blank. blankness. lots of it too. all running together.anyway. i'm angry and frustrated and scared right now. very. i'm shootin' blanks. there. i do feel better now. "

~~~~~~~~~~~

and i do feel better now. thanks for being here.


be well, be strong :)

more ranting...

*sigh*



had a few doctor's appointments this week. the one we were most concerned with was yesterday, with the surgeon. and i am still not sure how i'm feeling about it all.



he was able to patch up the bone marrow fissures in my right femure, so we'll see if that will help fix the crazy blood counts i've been having (platelets, red and white cells), or not. but we're still not clear as to why the bones are deteriorating so rapidly, which is why i had to have the right hip replaced too. we assumed, rightfullly so, that it was due to all the chemo and steroids that i take.



so, yesterday was the follow up. exactly 5 weeks. i think i mentioned before about the fact that the leg they worked on is now an inch longer than it was before. and i was concerned in the hospital and the surgeon just would'nt hear anything about it. "your swollen" he said. "just waint 4-6 weeks" he said. but now i'm just mad. and sad. why? well, an inch may not sound like alot, but it's huge! it's like walking around all day (permanently) with one high heel shoe on. plus, i walk much worse than i did before the surgery. ok, yeah, i had to walk with a cane, and used a wheelchair from time to time. but now i have to use a walker. the wheelchair is a necessity. i can't even use my cane. my beautiful purple cane.

it's much, much harder for me to walk now. i should have known that something would happen. look at all the crap that happened while in the hospital! hell, i kept postponing the surgery!

so, the surgeon left it by writting me a perscription for a shoe lift for my good side, and a leg brace for my right (bad) side due to something called 'foot drop'. which is now much worse than before...??

that totally pissed me off. ok... i get that i need time to heal, and that it takes me a while to heal because of all the immune suppressing medications. i get that there's really not much that he can do to fix this new issue. but damnit!! at least acknowlege the fact that there's a problem!! sorry goes a long way with me.

yes, i'm leaving out a ton of stuff (geez i wanna cuss so badly!!) that was said and happened at the doctors appointment that would help put a fine point on my frustration, but, i'm afraid that i'm always too long winded. so, in an effort to cut to the chase... just know that there was a bit of rediculousness that occured, that served to make me even more pissed off.

so, if i am to leave it up to this surgeon, i am now walker and wheelchair bound with significant leg length difference and incredible level of discomfort from muscle pulling due to the additional inch, along with foot drop that requires an ugly foot brace. there.

i'm pissed now. and i've given myself until 6pm tomorrow to get over it and start figuring out what the hell i'm gonna do about it.

be well :)

still here...

hey y'all...

yep. still here. two weeks later. i am trying to keep a good front, but it's gettin old. hell. it is old. i want so badly to go home. i ache for it. for home.

i thought i was checking out of hotel le hospital today, but the doc's, occupational/physical therapists, and even juan, feel i'm not ready. ok. that's fine. whatever.

so, i was about to vent about all that has been going on with me since i've been here. but, i don't know where to start. there's been so much. and, really, i don't know what good that will do anyway. because it's done. and i think you should only focus on not necessarily the good, but on the things you can do something about. and aside from walking the hell outta here, there's not much i can do about most of it.

however, i am going to talk a little bit about just how sick i had gotten earlier this week, because i am feeling like i need to vent. just vent. exhale. and because i tend not to vent much in my non blog world, and the fact that i'm cooped up in this room with such a great view and that it's a wonderfully glorious great weather day here in the bay area and i haven't been outside since glo was here last week.... i'm feeling pissy. so, here i go...

as i've mentioned in previous posts, i have a host of secondary issues related to my diseases (i'm only gonna say this once, so pay attention (denial? maybe, whatever) - interstitial pulmonary fibrosis, systemic lupus, lymphatic cancer, vaculitis, and suspected ms, affecting my heart, lungs, brain, connective tissue, and now most likely my bones), one of which is a tendency to 'throw clots', which means that for some reason my blood doesn't work right and tends to clot. that's not good because they can travel through the body, usually hitting the lungs (pulmonary embolisms), which is the problem i have. and i have an issue with healing normally because of all the immune suppression stuff going on (steroids and chemotherapy).

so with all that said, and with all the mixups with my medications - under dosing, over dosing, insuficient pain management due to misunderstanding of my diseases - i got really sick begining saturday. i just didn't feel right. i knew something was up, but i couldn't put my finger on it. come to find out, my INR levels (or "pro-time". it measures how fast, or not, your blood clots) were through the roof - 14.8. to put that into perspective for you, the normal range is 1-3, with 3 being a bit high, vitamin k intervention at 5. if it's too high then you run the risk of internal bleeding because your blood is too thin. and guess what? i began to bleed. yep. from just about everywhere but my ears. it took a minute for them to get me stable. they were too afraid to move me to icu, so they kept me in skilled nursing, which is a total misnomer!

juan and i talked and we are seriously thinking of checking the hell outta here. will keep you posted....

be well :)

update..

hello there!

yes, i'm still here. i'm a bit beat up, but am keeping on keeping on. this is my first access to laptop, and it feels funny. i haven't been able nor up to posting really.

so, here's the 4-1-1- ....


i'm not ready to go home :( so they've moved me over to the skilled nursing facility or "SNiF". the stubborn me say's hell yes, i'm ready to go home. emotinally. mentally. but i am really not ready to go home... physically. and i recognize this. so, i didn't put up a fight, believe it or not (Babz!). yes, i'm behaving. i'm in skilled nursing because i still am having medical issues, along with my other cadre of stuff, so it'm not just your regular ole hip replacement. there's more too it.

i had a few set backs with medication mixups (both over and under dosing), and blood work numbers not looking so good (had to have a blood transfusion), and finally juan just going off on everybody!

overall, i am doing well. truthfully, i am not feeling too hot, i hit a wall today and just had nothing to give. i couldn't even pretend. plus, and most importantly, i am missing my family - my baby - ladybug. she started crying on the phone last night and i almost lost it! i was able to talk her down though, and managed to avoid the waterworks tonight. i'm ready to go home everyone. but, enough being sad. i've got to get my bum in gear and start working tomorrow so i can come home!

thanks for listening. caring.


be well :)

i've always had a 'thing' for power tools! surgery anyone?

yeah, i know. it's been awhile and i just wish i had the time and energy to fill you in on all that has happened since i've come back from atlanta. but i can't. so i will give you 'just the facts, ma'am' as my guy joe friday would say....

well, the time has come. yep. gotta go get cut up in about 7 hours. i feel a bit better about it now, but the last few days have been hell. really.

it all began last week thursday when we got back from atlanta, and i had to begin all my pre-op stuff - labs, joint replacement classes, several rounds of pow wow's with all my various doctors to discuss my delicate situation. they kept talking about all the risks involved in my case particulary - neurological relapse, heart/lung issues all over again ( i won't go into detail because i just don't want to think about it anymore). then they say that the whole point of hip replacement surgery is to relieve pain and improve mobility. well, my mobility issues are not due to the fact that i, in essence, do not have a right hip, nor do i feel the excrutiating pain i'm supposed to be in because if my neuroligical issues.

so i got quite aggitated all of a sudden. "why am i taking all these significant risks to fix the pain in my hip that i don't feel?" plus there were anesthesia issues - do we put her 'out' or just in 'twilight'? well, they're gonna put me on the respirator to protect my lungs (part of a grand, well orchestrated plan mind you), so they felt i would fight it if i were in twighlight, where as my neuro issues could kick up again if they put me out. well what is a doctor to do?

i told them that they better figure all this crap out, and to beyond my satisfaction. needless to say, i was scared. and anxious.

i'm not so scared anymore, but i am still anxious.

so, that was thursday. yesterday the doc's met and worked it all out to my satisfaction. but i still had a day from hell. my baby, my T5 wouldn't start. i actually started to cry when she was loaded on the flatbed tower and taken away to the dealership. and my other baby, my dog malik, had a crisis and i boohooed after that. (he's 13 years old mind you, and has cancer too). i was all alone, and he fell and couldn't get up. now, he's normally almost 200lbs. but because he's sick, and now, i realize, is near the end, he's stopped eating and has lost alot of wieght. anyway, that's just a third of it all. it was a, excuse me, shitty day.

so now, i'm sitting here. with nervous energy. still not packed for the hospital. blogging. thinking about my ladybug really. my eyes are still burning. stinging from crying earlier. she's at my moms tonight because i have to go into the hospital so early, and will stay with her for a few days. so i packed her bags and took them up to my moms (she's just behind my house, practically across the street actually-don't you fuss about me driving babz!!).

i came in, chit chatted with mommy, then headed up to her room to kiss my baby. the love of my life. i found that i couldn't leave her. i sat there, staring at her. smelling her fresh bathed scent. memorizing her every feature. her fingers, the way they bend inward. how my thumb still fits perfectly in her hand. and how she still curls her hand, fingers around it. i listened to her breath. her heart beat. i kissed her fingers. her hands. i layed my face in her hand. i touched her face. her nose. lips. eyebrows. i love how her top lip is slightly pointy and wide. and how her bottom lip and so smooth and is an almost perfect long oval. how much she still looks like a baby. a baby. my baby.

oh, here come the tears. i found that i couldn't leave her. i cried. hard. i love her. and those 3 wonderful words don't come close, are not enough, to express how i feel about her... what i feel for her. i love her so much that i physically hurt to leave her. do you know what i mean? i prayed to god to move me.

i couldn't take it anymore. i stroked and caressed her face. yes. to wake her up. and she did. i needed to see her eyes and hear her voice. she looked up sweetly at me, not sure of what she was seeing, then realized it was me. she said "hi mommy". my heart lept, my breathing paused. i just told her "hi baby, mommy just wanted to kiss you goodnight". she asked me if i was still going to get my leg fixed tomorrow, there's somethign about the way she says tomorrow. she said ok, then asked me to scratch her back. bingo! few more minutes. then, it really was time for me to go. so i said "ok baby, mommy's got to go now...mommy loves you". and she said "i love you too mommy", in that way that makes my heart just sing!!!! PAYDAY!!! so, i said "no baby, mommy loves you more", and kissed her again.

so with that, a hung from my own mommy, and the tons of prayers and good wishes and support from the most wonderful, soulful spirits - friends, brothers, sisters, aunts, divas, and soulmates - i am armed and ready to go!!!!

let's do this.....



ps... i love you.