Calling all KBG - team meeting

[Mikkimoe]

So a few months ago we had a pretty fired up little gang ready to kick dragon hinny and we called it the Kick Butt Gang - We were all pumped up and ready to rumble but it appeas we have all taken a serious tumble.

Pretty much an "E coupn" ride we're on here huh (for those of us old enough to remember that disney land ride....funny can't remember my dogs name right now but remember that)

Stop this train I want to get off!.....can you say triple side with a double side on the side beside the multiple massive side buried deep below the still burning origional side please?

That's what we get on our e-coupn ride...having fun yet? I'm having a post party at my place in CA when this is over for us and I'm buying cases of champage and tons of awesome food (and Jim will be our entertainment - his wings are still intact :-)  AND your all invited...now isn't that a great goal..beats my previous "I will get out of this wheelchair" one.

Gee I'm on a roll tonight - it's Soma thirty and my altered self is out of control - but its kind of fun to be capible of typing for a change...OK lets hear some more butt kicking stories from our Kick Butt Team......kimmi, florida Mouse, Susan, wassup, charm, trish, cocksparrow, bill, dennise, kitty, angie, meki, lady, anwa, deb, imr, fuzzy, pigeon alagal ....and all you old timers I left out...come out and play......

I will have prizes for the one with the most sides so lay em on- OK I get to start....someone follow

Mikkimoe (2B - wk 8 - RA)
Sides include,
1.Migrains (mashed potatoes packed in ice)
2. nausia (if I eat it what will it look like later)
3. RA flares (The tin man lost his oil can)
4. IBS (get those critters out of my tummy - now)
5. Tinitis (can someone remove the freight trains from my ears?
6.Mega fatigue (Slugs covered in molasis move faster)
7.Palpatations (bumpitybump...bmpbump....bbbbbump...silence...babababababba)
8. mouth and body sores (kiss me I'm sexy- mix all the products recommended on the board together in a water bottle and gargle)
9.dry burning eyes and mouth (the sierra dessert can't top this)
10.split lips, dry skin (I will never take a bath again - loition...lotion....lotion
11. 1/3 hair loss (The 2 year old neighbor has a thicker poney tail
12. Dizzy, disoriented (use to pay good money for this kind of high ....gee guess this isn't exactly cheep huh.
13. Riba Rage (I hate you - I love you - who is this person)
14. Brain Fog (do I know you?
15.Poor vision (can you please hold the menu over there so I can see it
16.Periferal nuropathy (How come my arms and legs can fall asleep and not the rest of me?
17.Insomnia (It's not late - it's early
18. Anarexia ( I hate food that smells, has texture, or that you have to eat...yogurt is OK
19. My bumpber sticker on my wheelchair say's my other car is an infinity....i miss it...

Hugs,

mikmo

OK - your turn...

[Mikkimoe]

Got it - thanks....how you doin?

[Wassup]

The readers Digest version is that while attending a Memorial Day Picnic @ tha Park, I developed a hellatious Migraine, ad nauseum, got sick, went to Hosp. got a shot of Morphine, laced with compazine, (for dry heaves), felt better, went to Sis's in Carson, spent the PM, Mom an I drove back to Laguna on Tues. AM. Got 2 wk. BT's on Tues.  I'll post more detail in my journal.  Had a good Dr. appt. today. (see journal).  Did you see I reserved the 'BOOBY prize', (at our after party) for you! We'll have fall... busting out all over.Hee Hee I do hope you're feeling much better, we've gotta find a way to get some pounds on you, you're too tiny to put up much of a fight. That Dragon is moren twice yer size.  Your like David... to Goliath!I'll put on my thinking cap,  (when I find the darned thing)LOL.Many Hugs Mikkidoodle.  Love is in the wind.  When are we gunna have some more Mucking fun?  I could use a horsey fix!!!!  Me

[Mikkimoe]

what are we going to do with you?  I know your just trying to make me feel better....

my poor eyes and brain still can't really comprehend what happened to you - but it doesn't sound good....please take care of your self so you can take care of me :-)

[Wassup]

Trish, if we do have a booby prizzze, we've already promised it to Mikkimoe. 'Sides', Ah yes, I remember when a 'side' was something you ate, along with your main course. I've been doing fairly well. But I did lose my balance 8' up a 10' ladder, and got banged up a bit.  The worst part was trying to keep mom from touching my biohazard blood.  "Oh, honey, here, let me"...."Mom, don't touch me, just start opening up some bandaids for me, Please!!!"  Then, just the normal, everyday kind of, generic headache, (that never really goes away).  I should have appreciated it more!! Here I am, at the picnic wit about 100 family and friends at the park.... One trash can is filled with ice and canned sodas, and another a few feet away is for trash.  I lay there in the shade on a chaise lounge trying to remember which one is which (trash/sodas).  I can feel my mouth filling with saliva and I know I've gotta get moving toward the trash one.  People are enjoying their ribs and sides.  I try to wait til they finish eating at the table closest to the trash.  I make it just in time, (the trash one, TK Heaven) and heave ho. LOUD PROJECTILE, I tried to stick my whole head into the trash can so they wouldn't have to see, Bad enough to hear, smell. This lasts about 2-3 minutes, and I go lay down in the car, in the back seat.  I'm thinking that either someone is trying to shove my eyeball through the socket & down my throat,  or a brain anurism?  I have a plastic bag in the car to evacuate into and keep on barfing the 5 miles to the hosp. they bring me a pink bucket and a wheel chair and a sheet. I wrap the sheet around my head and shoulders and with the bucket on my lap, keep heaving til I started expecting to see toenails in the bucket.  Nothing was left to come up, but did my stomach care? NO SIREE, I just kept making the most disgusting groaning gagging burping noises I've ever heard come out of a sober person. They wheeled me to a quick intake area of the ER, where I waited only a little while (in my rolling gagging white cocoon), and after a BP, Temp read, flashlight in the eyes, I was given Morphine with a dash of compazine in the bumper.  Whew, was I the life of the party or what? This 'volunteer' shows up in the curtain area decked out in a red fuzzy wig, clown face, flag outfit, green nose, crazy kinda cheer me up outfit and gives me this sticker, with a happy face on a flag background.  I smile at her, and the smile sticks! Now I've got weepy red swollen eyes and a glaring grin from h3ll and just want a sip of water. It's hard to say 'please', with your upper lip stuck to your gums. Bone pain  @ hips, as if I were trying to deliver a baby, (sideways)! So, some people will do just about anything to get out of clean-up detail, huh?  I'll bet that the next time I say I don't feel well enough to join the festivities, No BODY'S gunna twist my arm to get me to come!  Ya think???  So, how was your Memorial Day?  LTIF, Bevy      

[kimmypoo2]

HEADACHES
RIBA RASH
FEVER AND CHILLS
NAUSEA
BRAIN FOG
NO APPETITE
WEAK
PALPAT
DIZZY
EARACHE
NOSE SORES
MOUTH SORES

[Mikkimoe]

Thanks for helping to put things in perspective for me....it is so interesting the tolerance levels that different individuals have. I too had to split pills and could never take full doses. And I'm sure body mass, climate and stress factors also can be taken into consideration. Not to mention pre-existing conditions like my RA. I am comforted in the fact that many of my buddies are handling this tx fairley well and you are all so brave and couragous.

Sometimes when things are really really bad I just tell myself that means it's working real good - just to make myself feel better. Most times I just reflect on all the wonderful things I have in my life (my wonderful husband, family and friends, My awesome mare and colt and my home and look forward to better days ahead)

Thanks you all for being here for each other,

Mikmo

[Marcia2202]

Thank you. I guess we'll have to wait and see! I really don't want to win this competition.
:-)

Marcia

[charm27]

Just so you will know its not always that bad. I had bad itching the first 3 months it went away. I dont have dry mouth. However I do have cracked lips on the side of mouth which is no big deal. No nausea, no weight loss. My ponytail is pathetic though..but that is par for the course. Im not dizzy.
Just fatigue, irritability, and weakness.
Everyone is so different. I have NO problem with food I can eat anything and everything tastes good except for sweets? But who cares about that.
So we will all have different sx.
Lately I do have some pain im my body which is a new sx.
Skin is very dry but manageable ( except for my poor ears), I wish you the best.
Hopefully you will sail thru. Just be patient with yourself.

[Marcia2202]

I am preparing for the worst, really, I am... I would not be astonished, if I had the worst sx. I get drowsy from the tiny shot my dentist gives me. I feel sick for 2 days after I have vaccines for traveling. And usually I only need 1 Tylenol, when others take two.

to All

I consider myself fortunate that I have the opportunity to prepare myself practically and mentally for this roller coaster.

I sooo cherish all the knowledge and love I have gotten and am still getting from all of you amazing people here. I am glad I found this forum and am proud to be part of it.

Marcia

[Trish77]

Mikki ... I know about the dry mouth, the cracked lip, the tinier pigtail (I don't have ponytails anymore) .. I'm just thinking my little piggy is cute, you know?  :)  I have had it easy compared to alot of you.  My itching was feather itching, my mouth gets dry but hasn't broken into sores, my lips have cracked a couple times but nothing crazy..sleep's a weird thing....but nothing at the point where it's not manageable.  I know I am very fortunate .. is there a booby prize?  :)  I deeply wish things were better for you and everyone.

Take care, Mikmo.

And Marcia... none of us knew what we were getting into when this treatment started....you takes what you gets and you roll with it.  You are a strong person mentally and that will help you a great deal.

Trish

[meki]

Teritoo - YES... it is a Godsend... Or whatever your belief is...

I totally sat here and stared at the pages and cried that I hadn't seen this site till near the end of my TXing... And I was at a point where I couldn't mentally or physically put two sentences together - and could barely hold on to what everyone was saying.

And me --- I'm a gabbermouth... I gab at anyone or anything --- so when I first came here it was amazing to see people who were or had gone through what I was going through.

And I read until I could actually put out a whole paragraph --- and then jumped in with both feet.

Welcome to the crowd here - great group of folks - excellent opinions and experiences...

Together we make a formidable group in education, and uplifting for new and older folks (not age wise) who need help or are seeking answers --- or just need people who can understand what is actually going on.

Meki

[medicmommy]

Mikki, I couldn't have said it better myself! TG no migraines and constant body pain for me! (Well, THAT sounds like FUN! NOT!)  -The party idea sounds great! -I'll let others partake in the champagne though...No way am I EVER going to do evil things to my liver (like drinking) again!  (Please pass the sparkling cider!)

Marcia- I have a mantra...This is all temporary, my dragon is dead...sides are merely a nuisance, to be tolerated like an annoying neighbor's kid...May you not have any sides, and be cleared of this!                                                    ~Melinda

[TeriToo]

This is my first visit to this site..and even though I am sorry for what you are going through, I am glad to see I am not going insane. I could have written your list myself! I actually think this site was god-sent. I am hoping to learn. Thank you. Just did shot 13/48.

[Trish77]

This is one competition I don't mind losing...and I wish there were no winners!

I haven't needed rescue drugs, just keep having the "dosage reduction" conversation and then rebounding in time to avoid it.

I've had the nausea for many weeks which has lifted now and I'm grateful.
I deal with the anemia ongoing and the fatigue.  At Week 13, it's catching up to me and I'm emotionally, mentally and physically exhausted but mostly physically.  I'm not able to keep in touch with people as much as I'd like and just sitting in the chair to write emails is exhausting physically and mentally so I've slowed down on that.

Having said that, I'm still working and not having a hard time with that.  I'm finding that working keeps my mind off of other things.  As Friday approaches, I start looking forward to getting to rest finally.  I hit the bed Friday evening about 9pm cause I can't tolerate the thought of going earlier and then I just rest and sleep as much as I'm able to manage the rest of the weekend.  My most luxurious moment of the week is that Friday night sleep into Saturday and finally giving my weary bones a rest.  Just finding that more of my weekend is going to rest as I go and it stretches later and later into Sunday

I'm still taking two courses but it's a real push to get through all the coursework and reading and I'll be glad when they're done.  I was feeling reasonably good when I started them and both were opportunities I thought I'd rather try and see if I could make it work than let them pass. I'm pushing through on both of them and I'm done end of June and can hardly wait to be done, but decided to keep on going as it will be a mental boost to complete them and a mental hit to drop out.  My daughters will believe it when they see it but I'm going to take the summer off and not get involved in anything, no courses, no nothing.  Just total indulgent freeform free time so that I can rest up as much as I need to outside of work.  I'm thinking it's absolutely necessary to make sure I can keep working.  I'm getting me through this and I've still got one in university and the other two still getting their feet...so a girl's gotta do what a girl's gotta do.

The tx is taking it's toll on me increasingly emotionally and physically with the fatigue...but I'm hanging in there and adjusting where I need to as I go.

I sure like the idea of a party to look forward to when this is done!!  :)

Mikki and the rest of you, I hope the sides get easier .. and at the least, we'll be here to cheer you on and support you all the way through.

Trish

[susan400]

I am a decorated member of the KBG, but unfortunately I can't join the after party yet, because I have yet to reach the SVR gang.  Still treats ahead for this KB girl.  I've had all the above mentioned sides before except:

No Migraines
No RA  (but arthralgia's, just not RA)
Very mild neuropathy in my right foot, but neurologists visit shows nothing and I don't have cryo.
Flash between fevers and chills
I have had, for quite some time a permanant disabled parking (portable hang type) of tag to transfer to different cars.  I only use it when I feel weak (like when I'm treating and I'm short of breath from anemia), or so fatigued that the idea of walking a long distance from my car to a hospital or shopping store makes me want to cry.  On other days, I don't use it and I'm forcing myself to walk on the treadmill....??  Sounds a bit crazy to me.

Other than that, all those sides are here with this KBG, on TX that is.

Susan

[Marcia2202]

Thanks. Just wanted to let you know that you need to inform your Reumy, if you are taking any AD's as they can be dangerous, if taken with certain AD's. You can check out Tramadol on the net, they have all the sx and no, no's on their site.

All the best txing.

Marcia

Isobella, if we start a group, we gotta call it something else, if not we'll be the newbie copy cats... :-)   not so good he, he

[Mikkimoe]

Thanks for the well wishes - I'm really liking the party idea...I'll put it on a post it note and stick it somewhere so I don't forget lol

OMG - meki - to funny about your band......that's a whoot...would love to hear it some day....I use to play the flute in a band with my old boy friend...he became the drummer of Captain Beefheart...and did some work with Zappa. Our band was out in the Desert and called Rattle Snakes and Eggs - pretty funny.

I'm watching this funny lttle series every night to laugh - two men and a baby...too funny

How did your Dr. visit go - thanks for the tip on the tramadol - I'll ask my Rumy this week about it.

Eurika - hubby will do fine - seems guys handle it pretty well....I can picture the Yogurt on a silver plater...perfect

Darla - How did I ever forget the itches - holy cow they are the worst...good list

GSD - that's a heck of a bike ride - no wonder your still tiered - ha....sorry you still are having sx...bummer

Iobella - yea it's cool to get a start together group...I stay connected with some via email...really helps

Marcia - sounds like you and Eurikas hubby will be starting together....cool - good luck

Take Care,

Mikmo

[meki]

ROFLMAO!

I can sooooooo relate.

Girl - Hang in there ---- and I don't mean with a noose. LOL!

I mean - just hold on --- that POST party is something definetely worth having.

It's also worth dreaming about. Very much so.

Those sides --- all except the wheelchair part --- I can understand totally.

Just FYI - yesterday they gave me Tramadol - I actually think it will work completely well - at least for a little while. It actually took away the pain without any major side effects or anything. Totally awesome! Don't know if that will help you - but it worked for me.

What's even funnier --- my band (I sing and play rythym guitar - we're a bunch of 40 nobodies who just get together and play stupid stuff) --- we've called ourselves the KGB.... ROFLMAO --- so I was like --- HOW did She know?

The KGB = Kodiak Garage Band.

LOL!

Anyhow - write your dog's name on a post it note somewhere - and just hang in there.

It's a merry-go-round side effect trip. One day will be different from the next.

And yeah - you won't be the same at the end.

But with a little luck and lots of hope you WILL kill this dragon.

I'm sending you tons of love and a lot of smiles.... REMEMBER --- keep your humor - it's one of the MOST important things to handling this psychologically.

When you can't keep it up (LOL) --- you get the funniest DVD or movie you can find --- and you sit down and watch it... Even if it's the 3 Stooges or Police Academy... Or even Rocky... LOL!

Hugs!

Meki

[eureka254]

Glad to see you hanging in there!... Amazing, despite it all, how you manage to make it all sound... fun.  OK, not fun, but definitely funny.  :)

Party?!  Is it a costume party?  (I'll have to find that KBG-looking suit... but the badge won't be ready until July 29th -- hubby's planned tx start date.  I hope he won't have any significant sx to list -- I hope he's not the prizewinner on that one! -- but if he becomes eligible for the contest, I'll post in!)  

Since Fuzzy's bringing the party favors, I'll bring some food... yogurt sound good?  I'll bring the flavor variety packs.  

Sending healing thoughts your way,
eureka

[fuzzy1dar]

Oh Cool!  something to look forward to a party.....I'll bring the gold bond and back scratchers!  lol  Well mikki I think you probably have us all beat in the sx department...poor you!  Lets see where do I start:

severe brain fog (sometimes I can't read or write)
blurry eyes ( and if I can read or write I can't see to do it)
lets don't forget the itchies....this one should be #1 on the list!
Neutropenia..so means another wkly injection and hopefully no infections along with that!
Low HGB/RBC...dragging my big bottom around thinking of putting wheels on it.  lol
shortness of breath,  dizzyness, and don't forget the all important dry mouth, eyes, nose!
severe bone pain and headache from the neupogen
hair loss...and whats left is sticking straight up
insomnia
riba rage....oh no you guys better look out she's on a rant!  that's what my son say's

can't think of anything else because the fog has just rolled in!  Take care you guys and have a nice wkend!  see ya at the party!

Darla

[GSDgirl]

I used to call it the Soma coma, at least it let me sleep.  Sides hmmmmm, you have a lot.  I didn't know that Periferal nuropathy was a side.  I had the MRI and all, they wanted me to go physical therapy during TX, yea right.  It was my left arm.  I also didn't know about riba rage, I now know why I was so awful at times.  12 weeks after TX I still (like yesterday) have the throw up even water all day, night sweats, fatigue, food just isn't appetizing sometimes.  I also sleep alot, 10 hours at night and about 2 hours in the evening, never needed that much before.

I have never been to California, been as far as Sturgis on the bike.  Talk about a long ride, Pittsburgh to South Dakota.  Can't wait for that party

Denise

[Isobella]

Mikkimo:   Glad to see you are feeling.....um, never mind.  Hope it all gets better sooner rather than later.  You are awesome to keep the sense of humor in high gear.  Can't wait for my E-ticket! (yeah, I remember)

Marcia:  We can be  the KBG2s!  Can't wait to start.  Remind me of that in about 6 months!  :-)

The best to you both,

Isobella

[Marcia2202]

I wish I could join the gang! Am not going to start treating before earliest mid-July. But I will be watching closely.  Hope you guys aren't gonna scare me off.... Just joking... Thanks for sharing the ugly sx in such a amusing and entertaining manner.

Marcia