Friday, November 26, 2010

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!                                                                                                                           

Thursday, August 19, 2010

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?!



Wednesday, August 18, 2010

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 :)

Sunday, August 8, 2010

green around the gills









i'm quite sick and haven't been outta bed in a few days - i won't go into details. but today i just HAD to see my garden and get some fresh air, i couldn't take it anymore.

so when i step out into the garden from the kitchen, this is what i see. once i got out there this morning, saw some zucchini ready to be picked, and broccoli almost. the tomatoes are going like gangbusters! i'm going to have yellow pear tomatoes for months.

i just love looking at everything, even when the yards a mess like today. the zucchini plants are just gorgeous to look at (to me), and it just amazes me how things grow. you see my little bell pepper? i'm so proud!

back to bed....

enjoy and be well :)

Thursday, August 5, 2010

confession

my name is angela and i watch "bethenny getting married" (and like her).

there. said it.

am i a big reality tv watcher? nope. i'm not a fan, and i won't get into how i feel about them. do i watch them? yep, there are a few shows i watch from time to time, but none regularly, faithfully.

as for bethenny getting married, and it's star.... i do like. i really do. there's something about her that's me... really. and i like it.

so there. think of me what you will.

be well :)

Wednesday, August 4, 2010

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 :)

Tuesday, August 3, 2010

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??

Monday, August 2, 2010

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 :)

Sunday, August 1, 2010

NaBloPoMo - Yes, it's been a while!

hey y'all!

yes, it's been a while since i've posted and in a way alot has been going on.

first, i'm going to kick my blogging off with trying my darnedest to participate in NaBloPoMo this month. it's when you post every day for one month continually on a particular topic. the topic for august is "Green" and other than talking about money and my garden, i have not other ideas, but hopefully more will come to me as i blog.

so for the updates:

- ladybug made it to the NATIONAL JUNIOR OLYMPICS in VIRGINIA!! yep, we are still amazed that she did it, and in 3 events - 200m, 100m, and the 4x100m relay! her medals are gorgeous and incredibly heavy. and yes, pictures of course!

- my life coaching practice (TurningPoint/Coach Angela) is definitely keeping me busy, and that's a good think because that means there are more and more women out there who are realizing their worth, and deciding to work on themselves, their relationships, they're financial, and employment situations. i'm working on new workshops for 2011, so stay tuned!

- i'm in the process of starting a charitable not for profit specifically for those recently diagnosed, fighting against, and more importantly, living with Lupus - THE BUTTERFLY PROJECT (site is under construction). i've selected the board members (and everyone has so graciously accepted), incorporated, filed state and federal tax exemptions for 501(c)3. i've got the state tax exemption, but the fed will take a while unfortunately. i'm working on the first fundraiser, but am going to wait til i've got everything i need to be able to say "your donation/gift is tax deductible". even though it's ok to do actual fundraising before the federal certification (i think you have up to 27 months), as long as you are incorporated and have at least the state certification. but until i get that i'd feel like i was taking peoples money 'unofficially'.

- health wise i've had my ups and downs - more downs in some areas, more ups in others. it's been a good year heart and lung wise, but not so much neurologically. we've been knocking around the idea of a bone marrow/plasma transplant thingy since late january (see short post), and like only i can, i've been putting it off. well, actually, i can't take all the credit. my doc's haven't been in agreement on whether or not to do the procedure because my heart and lung doctors, and rheumatologist are concerned that my heart/lungs can't handle the procedure. so we've been adjusting the medications and i had an intense couple rounds of chemo in february, and there's been no improvement, only decline.

so i start more chemo tomorrow morning and if there's no improvement, then we'll go through with the transplant procedures. hubby is not happy because he wants me to skip the chemo and get the transplant done. why? well he feels the chemo isn't working, and that all it does is make me sick with no payoff. i understand where he's coming from, it's tough for him to see me go through chemo. but i appreciate the doctors caution.


let's see.... i think that's it. so lets get on with the NaBloPoMo topic - GREEN.
and i'm going to give you a quick update on my garden! it's going like gangbusters! i'm a newbie so i've had a few mishaps, but nothing catastrophic. as a newbie i've made classic newbie mistakes like planting things waaaay to close, and not catching cabbage worms quick enough. but all in all, things are going well. i've managed to harvest 3 heads of broccoli, 5 zucchini, about 4 cups of green beans, and one small tomato.

i'll give you more on my garden in the upcoming weeks, so stay tuned!

Thursday, June 24, 2010

more dirty talk..... !







hey y'all!! its farmer tinybutt!

well, so much has been going on and i must apologize for not blogging about much of it. i promise, i will be better... TRUST ME.

so i'm working at becoming more proficient with this, and am excited at the prospect of feeling like i know what the heck i'm doing. so far other than the ongoing herb cuttings (rosemary, thyme, sage, parsley, tarragon), i've had only a couple harvests - spinach and lettuces. the lettuces are an ongoing thing, you cut/trim, they grow back. but we've had several early and unusual heat waves here in the bay area, so my spinach 'bolted' on me, which means it puts all it's energy into making seeds and not growing or producing fruit. depending on what plant it is, it can be a bad thing to a not too bad thing. some veggies that bolt can still be eaten, like spinach, but the longer you keep them growing, the more bitter (bitterer..?) they get.

so i've been worried about my cabbage and broccoli because of the heat as they are cold weather crops, along with the lettuces. i have lost 3 cabbages, one to suspected bolting, and the other 2 to aphids - nasty, creepy, dastardly little buggers that can be extremely hard to get rid of. it doesn't take long for them to quadruple-ply, they can be hard to manage, and depending on the plant, can destroy it in short order. then there are cabbage caterpillars that can/will eat your leafy green gardens then turn into seemingly cute little white butterflies, but wrong - they're moths that come back and lay they're caterpillar eggs again. ... sigh!

but i'm encouraged though! i have many, many little green beans, lots of little squashes, a few little green tomatoes, and finally - a itty bitty broccoli head!! it makes me so happy. i still have alot to do with the yard/garden for sure, but i'm just amazed at the fact that i've planted things in the ground and they're actually growing! in the meantime, here are some pics of my amazing little piece of paradise.

be well and enjoy



AS OF THIS EVENING:





Tuesday, May 18, 2010

getting dirty..... no, not that!




growing up i was very much a tomboy, a 'blue' kind of girl who very much wanted to be a 'pink' kind of girl. blue came naturally, and was just easier since i was my father's son for the first 10 years of my life, til my little brother came along. but i longed to be a pink....i just didn't know how. i always thought that i really was pink somewhere inside, more than just longing and wanting to be, simply because i didn't like to get dirty!

i hated getting dirty. i would throw a game of run down if it meant that i'd have to slide into some dirt. i remember passing on playing my most favorite-ist childhood game - jacks! all because i didn't want to sit in the dirt. i especially hate/hated dirt under my fingernails.



fast forward to now. i'm elbow deep in dirt. and not just dirt - compost and manure - and i love it! do i know what i'm doing? nope, not really. but as each day passes, everything looks better and better. well, my bok choi was looking a bit peaked, so i had to replant them closer to the house and fence so they'll get more shade, and they've perked right up! i'm so happy because i was so worried about them.

gardening makes me happy. truly happy. and i'm thankful.

Thursday, May 13, 2010

my new venture.... yes, another one

as you've seen from the post below... i've taken up gardening. hubby built two 3ft x 3ft raised beds that are about 16 inches deep and filled them with good old fashion organic compost - all in one day! boy do i love that man!

on moms day we went to the garden supply and nursery to pick up the things we/i needed and i got to it on monday and tuesday. i'm trying hard not make what the 'certified nursery professional' called a classic newbie mistake, by going overboard with all my plantings. i'm trying to be smart about the space i have, which is not alot, and the amount of sun i get (about 5-6 hours max), and what i want to grow/eat.

we don't have a lot of backyard space in general, but its just right for us, so i'm trying to balance the growing space with patio/entertaining space with where the sun actually is for most of the day. and it's not easy! we've been on a search for the perfect patio furniture for at least 2 years now and still no luck. i don't want to spend an arm and 2 legs, but still want something with a little flair i had no idea just how hard that would be. so now summer is fast upon our heels and we still have nothing. well, actually, we may have found a compromise at a local store. yeah, if we get that set we'd be settling, but hey, i want to actually sit out, or maybe even take a nap in my backyard this summer!!! i will have a set by the end of next week if its the last thing i do!

now, back to the veggie garden... so i'm going to try to grow -
3 types of tomatoes - sweet 100's, yellow pears, and early girls
3 kinds of summer squash - green empire zuc's, and yellow straight necks
italian bush beans (green beans)
bok choy
2 types of sweet peppers - red and green bells
collard greens
cabbage
spinach
broccoli
various salad greens - mesculin mix, romaine, red leaf
various herbs - rosemary, thyme, sage, french tarragon, genovese basil, and parsley

so what do you think? enough huh? i know! and after i plant all that, i'll still have those big wine barrels left to fill!! hmm... corn? carrots? rainbow swish chard? i'm so happy i could scream!!

be well :)

Wednesday, May 12, 2010

mommy's day


this is late, but i've been just too pooped, and my fingers have been too swollen and too much pain to type.

well, i do hope that all the mommies out there who deserved to have a great day for them, did. i know i did!

it began with hubby dearest getting ladybug and i up at the almost the crack of dawn - 7:30 am - he let me sleep in! we went off to breakfast, then he took me to my all time favorite kitchen/cooking store - Sur Le Table - and let me pick out several things, but most important, he 'made' me get my beloved Le Creuset!!!! i have been a crazy fiend for these pots for at least 10 years! my granny had 3 that are at least 40 years old, i just don't know what's happened to them. so, i hemmed and hawed about whether or not to get those pots til dh walked up behind me and told the sales lady that i'll take the purple ones. he said that that's why he brought me in the first place, and that he would have just done it himself only he didn't anticipate there being two different purples (purple is my favorite color), both of which he thought i'd like (he was right). i melted right then and there!

then off we headed to the nursery to get the supplies we needed for the raised bed garden that dh built for me. i was showered with cards from my brother, mother, and father, and then dinner was made for me! all and all i had a great day! here are a few pics... please enjoy!