Starting Chemo, November 2013 Group

Love all of the pet photos. They don't want much and seem to know when we need more.

I made it into the big girl chair today. All seemed to go well. Neulasta tomorrow. Took my tylenol and claritin tonight; The thought that I give these shots all time time to others but cannot give it to myself seems bizarre, but I was told it is 6000.00 a pop, so I guess the insurance companies want to protect their investment.

Got my herceptin tatatore any cytoxan. I did not have anything but a headache today. Think it was 4 days on 8 mg of decardron. 4 days in a row. DH is finally coming around to the fact that AI am being proactive for myself. I know he wants what is best for me but does have a difficult time accepting that I am doing something most doctors do not currently recommend for cancer at my stage. I just do not want to be looking over my shoulder and thinking could have, should have would have if and when something comes up again.

I have ordered my scarves and will use wrap arounds at home. Wigs don't fit well while I still have hair. Hope all are feeling well today. I am going to try to get sleep now. I have slept 6 hours in the last 3 days. More steroids tonight, so I don't know if sleep will come easily.

Please know that we are thinking of all of you.

Gayle

Glad you made it there today, Gayle, and good luck to Veronica in the BGC tomorrow! I'll be sending good wishes your way.

Veronica, you do need your liver and Wrenn needs her colon. Cancer does really suck at times and you all are being very brave and making tough but necessary choices.

Audra - I get the bone pain thing now. Hoping my MO will call in something strong tomorrow because extra strength Tylenol isn't seeming to do much. Hope everyone suffering tonight gets some relief.

@VirginiaNJ we have 5 kittens we didn't ask for if you'd like one or 5...

lol Lisa RE the doggie pic and kitten offer. I can't keep a plant alive - so I would worry about a kitty.

Can't sleep I am a chronic insomniac in the best of times and oh my gravy my body aches... I haven't been exercising other than schlepping through the stores Xmas shopping - it's been frigid here - too cold for me to walk outside. They are predicting a decent snowstorm for this Saturday as well.... I think the not exercising makes a difference (and not in a good way).

Best wishes to those having treatments tomorrow (so sorry fir no shout out by name..... I really am bad at that....)

xo

Hello Everyone! I hope and pray all of you on "this weeks round" are doing well! Am spending time reading...and reading....and reading....and my BRAIN has surpassed MUSH! I think that the Aliens came down and removed it! Not only that...they took my DNA and put theirs in!

Like Always....my posts willl most likely come in various parts!

Pheobe! Looks like you are closer to my chemo times...We are neck and neck! There are only like...um..I THINK ...three of us that are cropped together....Audra, Pom, A bunch of our other chemo sisters are on our off weeks. I know when I started, I actually kept asking if ANYONE was getting my posts! I would seem when I was feeling well enough to post..hardly anyone was around. Then when I would hit my bad days.....I SWEAR....the pages of posts would MULTIPLY like BUNNIES! It stilll happens that way but I finally figured out it was due to the timing. What stinks is that when they all are in sync...we are at our REALLY CRAPPY days! I still at times feel like the Red headed step child.....I'm sure it's just the meds messing with our heads~! Aint life Grand~

As to trying to keep up with posts and addressing peeps...I cannot tell you how many posts I've re-read....and re-read....and re-read! I found the easiest thing is to keep two tabs open and if you want to say things you can do it step by step!

One great thing about our group is that WE ALL KNOW that we are a bunch of BRAINLESS ZOMBIES! If its not the meds...it is the lack of sleep....too much sleeep...dyhdration and nutrition! It is wonderful that we have a sounding board to bounce what we are experiencing off others. It sure makes things feel better if you are not the only one going thru it! Especially when it comes to the most "off" subjects! a.e....BURPS, FARTS, SEX, BODY SMELLS, SEX>>>what is that again, EMOTIONAL MELTDOWNS, and so on.....on....on...

Hi AtlBrv....MAN....must be nice! We have like 14 lounge chairs in one room. My hubby has to stay out in the waiting room. They do not have any "extras...." no food, tv, etc. Glad youre with us!

Goodness....I CANNOT REMEMBER what day my hair started to turn into a creature on my counter! hmmmm....gotta loook!....Day 13....I first noticed that it was coming out in DROVES~ I looked like something off of 'THE WALKING DEAD!" I told my family that as soon as I had ANY baldie patches...it was ZIPPPPPPPPPPPPPP time! My hair lasted for one last fix up on my birthday. THe following day the "GREAT ESCAPE" began! We delayed our shave-a-thon a day in order to set up a SKYPE video connect with my daughter and grandkiddies in CA. Hubby, grandson and I all zipped our heads down! I choose to use a new razor with LOTS of thick shaving cream to smooth out the look!! I have only had to do a secondary smooth out perhaps 2-3 times~! Now my head is MIGHTY SHINEY and soft~! By shaving it down CAREFULLY it avoided the prickles and uncomfortable stubble. The most I ever had grow made me feel like a kiwi!!!

In ref to Men....Husbands and companions. My husband remarked yesterday as to how I was beginning to look like an alien!!!...(he has a nack for not making the most appropriate comments! Unknowningly...he just spouts things out! I have never heard of a man OUT TALKING a woman. Trust me MY HUSBAND is the most TALK....TALKIEST man in the world!! It really gets irritating when he says...."You interupped me"...(when you MEARLY interject! )THEN HE BEGINS ALL OVER AGAIN! Arggghhh! Now with his hearing failing....which he REFUSES to admit! It is soooo much worse!

Annnyyway~! Sorry for the side road~ MY EYELASHES are ALMOST GONE and my eyebrows are few and far between~ My LADY LAND...is well NO LONGER a LADY LAND but resembles a new born baby! What is funny is that was the LAST place to go~! I felt like I was going thru puberty in reverse!

I LOVE all your FURRY KIDS!

I have two VERY OLD>>>did I say DECREPIT old cats! One has diabeties and I must give her insulin shots twice a day. She actually is very funny...I can put her food up but she will still run behind me...waiting on her shot! That is Cali...she is hemingway (extra toes!)calico which we believe is part coon cat. Her fur feels more like a bunny rabbit that a cat!!!!The other Kiwi..she seems to have become a bit demented in her old age! She ...is a grey tabby...and MEEEEOOOOWSSS constantly for food! She has lost alot of weight now. Think she has kidney or some other pbms going on....But the furrrr.......

Did I say FURRRRRRR...........I am allergic to both cats and dogs..and mold,,,and bandaids...adheasives..and sing to Hughy Louis...And the beat goes on!!!!!! I live on sinus/allergy pills. They dont seem to help ANYTHING much now...since all the little tiny hairs in my nose are gone the only place for it RUNNNNNNNNNNNNN is OUT! My poor little nose is SOOOOO sore!

smrlvr! Hope ur doing ok! You mentioned BACK PAIN>..........GOODNESS! Back, hip, body, mind.....ARGGGGG. It seems anywhere you have prior damage...gets hit first!! I think some 100 year old lady is out there with my body! She stole it when I was 10 years old! What the %^&(!!!

Bec....Sac CA...my daughter is at Edwards. CA is a really......shall I say interesting place?! Very diverse and beautiful...but some of the laws and tax stuff is WACKAZOID! I get you on hubbys...mine has his ups and downs. There are differant kinds of impressions of how people show love....Mine is SOOO diff than my hubby of 23 years. I am a physical, touchie, emotional huggy person. Hubby...well...NOT SO MUCH..

It can really become an ordeal when these two OPPOSITE personalities connect. I LOVE him and wouldnt trade him for anyone but....at times....gimminie...a hugg would be nice! Well what can I expect from someone raised in a home where the parents ALWAYS slept in seperate rooms! How did the kids get made! Odd....

Wallym- You have a DOXIL too!!! That is the official name..but my hubby and I prefer to call her a Doggle! Ours is a beagle dressed up in a doxin suit! You look at her colors , and she look like a doxin BUT when you look at her body and personalily...she is a beagle! sooooo funny! send some pics!

I went to the Looks Good thing last week....or two...hmmm I think! It was nice. There were only two of us

Ellen..........LOVE, LOVE, LOVE the LOVE you have in both of your eyes! What age did you marry? He will ALWAYS be a part of you and will be there with you FOREVER!

my brain is flaking out so I don't recall. Has anyone had cystitis develop post chemo? Think I feel it coming on and have a call in to the doc for that and the pain. Want to get it checked out before bad weather shows up. Gayle, my shot did hurt at all (in arm) hope you have a similar experience.

Paulette baby! Thanks for the update. I loathe computer updates.

Goodmorning Ladies........

I-m gonnnnna cry! I HATE MY HUBBIES COMPUTER!!!!!!!!!!!! EVIL MONSTER!!!!!!!!!!!!! I had been posting reponses to yall....a BUNCH and somehow the page closed!\

GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR\

I did not follow my own advice I give my hubby. DO NOT write anything substantial in these little boxes from HELL! Instead write it on Word or something...then cut and paste. At least your words are saved!

Awww Mannnnnn! Anyway...What else do I have to do...here I go AGAIN!

Huggs to all! \

T're!!!

More cute Emmylou...just to make Mister Cat and Scarlett feel all left out....and because I found Emmy's pic first.

(Also because it is Emmylou who is currently insisting upon sleeping under the blankets and between my knees and causing me to wake up HOT HOT HOT every time I try to take a nap.)

whats with the site! Or perhaps its the chemo/lupus brain....I just had ANOTHER post go into nevernever land!LOL...its getting rediculus!

Lisa...utoo! lol........I am gonna loose it! This morning I spent and untold bit of time and when I hit POST it went to never never land!!!!!!!!!!!!!! GRRRRRRRRRRR.....I cannot figure out why? I will be rather funny if they show up later! Love your puppy!\

Wally momma! We have the same type of doggie! We have a beagle dressed in a doxin suit! It is actually named a doxil ...I think...but I prefer the name Doggle! Her body is more like a beagle but her colors and doxin! Longer legs and ears! lol! Also has the "voice" of a beagle with multiple tones!

As far as smells....."hound dogs" are known for there sense of smell. One thing that made me get the lump checked out (since I ALREADY have fibrocystic breasts...was how my pup would sniff me funny! like something was wrong. She would also PaWWW me constantly! She knew an invader had entered my body but wasnt sure what was happening! Between my Spirit prompting me in KNOWING something was different and her incessant sniffing.....I RAN to the MAMMO!

I am NOT a dog person...though I LOVE THEM! (allergic) I normally stick to kitties....but this pup has been a life saver! Without her hound dog sniffer I do not think I would have gone in when I did. Mytumor was between 2.4 cm and 2.8 cm. Because I had two surgeries to "get the last little parts" it ended up at 3cm.

It's just the doggie smell..........lolsoooooo I take allergy pills like water!!!

Okie dokie! I do have more actually interesting and funny thing to relay!!! Off to pottyland and make some phone calls to make sure Im hooked up for the weekend!

ONE THING- IF ANYONE IS HAVING PBMS NOT DRINKING ENOUGH OR HAS OTHER HEALTH ISSUES A.E. LIVER, KIDNEY, ETC.....HAVE YOUR MO PRESCRIBE HOME IV FLUIDS DAILY! i HELPS YOU FLUSH THE BAD STUFF OUT AT A QUICKER RATE AND WILL ASSIST WITH LESS DAMAGE. THIS IS ALSO HELPFUL WITH NEUROPATHIES AND OTHER MED ISSUES! ONE DIFF BETWEEN DOSE 1 AND 2 IS HAVING FLUIDS! MAJOR!

THOUGH THE SECOND DOSE HAS SUCKED IN SOME WAYS I KNOW I WOULD BE IN THE HOSPITAL W/O THEM

BTW.....I did avoid the hospital...PRAISE GOD! I had a b/c ANC of 400...my main MO had me on antibiotics prev to the drop and I have been VERY careful to infection exposure!!!!!! I wear a mask and gloves when I go ANYWHERE! Ask to be seated AWAY from other customers at restaurants and have become VERY to others body lauguage! I do not touch money or shopping items w/o gloves now. Especially when in the nadir phase. I hear coughs and sniffles across the room!

Protect yourself while out for the holidays! If you need to decline an offer...so be it! No guilt! DO NOT ALLOW guilt to make you go somewhere where it will cuse you sickness of death!

You would really laugh seeing me walk around with a cain or my scooter, purple nitral gloves, sanitizer and all! I make sure med peeps wash hands, wear gloves, do NOT allow the phlebotomist....(blood taker) to rip the tip off their glove to take blood!!!!!!!!

I'm gonna look like Howard Hughes soon! But when your WBC hits 1.0 and the ANC is 400....BE CAREFUL! If you do not know what this means...let me know and I'll let youknow! I did not know the importance till a few days ago!

Ok ....NOW I will go back and read/type AGAIN! Everyone please know I am thinking and praying for our all....EVEN THE LURKERS! Come out of the dark~! We won't bite!!!!!!!!!!!!1

Later Gators!

T're!!!

ellen...sorry you got hit bad...I did this time too...just coming up for air. No sleep in days now! ARGH...we need to have a seperate what do you call it..........HUH..............I know........um.............not txt.............what is when you talk back in forth! lol!!!!!!!!!!!!!! brain abducted by aliens!....

crud.....ya....chat room! lol! especially for us insomniacs!

one daughter home, the other on her way. She got a ride so I didn't have to pick her up. Glad because I had a hard time falling asleep last night. Gearing up for big storm tomorrow.

I never heard of nadir? Do you feel sicker during the nadir period, like more tired?

So a few friends from work invited me over this afternoon. One I have seen, the other two have made really no effort to contact me since I've been out. I really don't feel like being "on display" for them, although I am sure that is not how they see it. It is how I see it, unfortunately. So I lied and said I had to pick up my daughter in Rochester. I just don't feel up to that right now. I know I will have to see them eventually when I go back to work but I am just not ready. That is a super change in my personality.

Hope you all feel well this weekend. I am going to try to decorate for Christmas.

smrlvr- Nadir also means that your WBC are at their lowest point after chemo which means one is more suspectible to infections.  The drop in the WBC can occur because of the chemo and when one is not having Neulasta/Neupogen shots.  It is hard to say if you will be more tired or fatigued just because of the drop in WBC counts.  I know if the red blood cell counts drop, one can become anemic and feel more tired and fatigue and lethargic.  I had Neulasta shots after Rounds 3-6 of Cytoxan/Taxotere and was my usual tired self after these rounds of chemo.  The shots did help keep my WBC cells counts up and did not experience any bone marrow pain from the Neulasta shots thanks to the Claritin I took.

Amazon...my hubby would beg to differ! He Loves pic of FISHIES! He comes home every night and says HELLOOOOO MY FISHIES! He knows all of them by name and personalities!

Yes....I must agree they do! lol! I am growing to love them to. If he could have a fish tank in every room wall to wall he would!

Ok yall...since we are talking about counts...Im at a dilemma ....

my WBC was at 1.0 three days ago....now it is up to 14.5....have been kinda sick over last week...kinda a cold thing I think....but it jumped. the concern is the RBC HGB count....my RBC has now dropped to 2.78 from 3.02 hgb 10.4 to 9.5....hct29.5 to 27.5 hydrating well with IV but not eating worth a crap....

I called the MO chemo RN...told her I have symptoms like ringing in ears worse, dizzy, dragging butt...dopey feeling...

Now she wants me to go to the ER. I cant till tonite when my hubby gets home. Any suggestions on how to raise my count/iron etc before then so I dont have to go? I DO NOT want to go to hospital! EVER AGAIN!

Morning Ladies....

Well...I got about a hour sleep this time......ARGGGG...so if I become incoherant just ignore me! lol!

Body smells! LOL! Don't we talk about the most FASCINATING SUBJECTS...REAL SMELLIE ONES!

I haven't noticed per se a chemical odor. Some days my normal fragrance which I LATHER myself in smells differant to me. I still get people stopping me wanting to know what my nice smell is. I use BBW Moonlight Path...and I use LOTS of it! Being in bed much of the time it sure makes me feel better!. I was concerned I would not be able to use it but thats not the case at this point!

I have noticed that body fluids do have a more pungent odor though...Also NOTHING smells normal! I have a hard time figuring out if food has turned bad and sometimes just the smell of certain foods makes me really nauseous.

Audra...That neulasta shot for me has brought the pain off and on for days.When I had accupuncture for the first time I was told that in his experience the pain seems the worst in areas where you have been injured previouly. Also the low back, hips, etc are really bad for some. I have it in all kinds of places...plus I feel it in the Long bones of my arms and legs. I don't walk much because of prev issues but have found that walking is one of the only things that helps! Additionally FLUIDS really make a vast differance!

I seems the second or third day after the shot really is BAAAADD!Then it seems to come and go..just when I think it's safe to go in the water....DA DUH..DA DUH..DA DUH~~~here comes the shark and it BITES me again!

It does sound like you are describing a hot flash or night sweats with your night-time fiasco~! I've actually had this going on for years due to the lupus and autonomic dysfunction. Apparently I went THRU menopause pretty fast just prior to all this. I wonder if having the cancer sparked an excelleration or the menopause sparked the cancer?Just a thought! I'm at a point now where I am up and down. My blood levels show I'm post meno...but the hot/cold continues. I guess it is a combo of the autoimmune, autonomic dyf, prv cancer (PRAISE GOD not in my body anymore!) or the chemo. I drive my hubby NUTS...One minute I am BEAT RED with the AC turned up to BURRRRRRR, dripping wet. Then the next minute I cannot get warm!

One "cool" thing is without my hair I can actually get cooled off MUCH FASTER! When sleeping I just kick my covers off and within minutes Im shivering. Then here I go back under the covers! Thankfully my DH sleeps like a rock and we have a King bed! It does get pretty comical! I feel like a cartoon character!

Like you said....seems we figured something out and BAM...we get hit with another SE! ARGH! Like I said in a prev post...it is simular to pregnancy! No two are EVER quite the same. My first round was SOOO much easier than the second...Hoping the next won't crop up a whole new breed of alien encounters!

I am moodier this time....with sudden jags of wackadoodle behavior or just plain old boo hoo...give me a PITY PARTY to certifiably NUTS! Thankfully the latter has only been once..of course THAT I REMEMBER! Seems my dreams during my 20 cat naps are SOOO vivid that I have begun to wonder what is real and what is fantasy!BIZARRE!

POMPOM..sorry about the back pain. This I know all too well. My heating pad jumps from my back to my tummy to help with the cramps. I swear sometimes I am a litter of aliens...maybe 5000 are going to explode from my tummy at any time! I have found if I keep my pipes cleaned out...that side effect is not as bad this round. Since I have gastroperesis and mine don't work normal...the chemo which is excreated somewhat through our most smelly avenue can really have an irritating effect if allowed to fester there too long. I know the first time it felt like I had a sunburn IN my gut~! The cramps were...UNREAL. This time I went into it totally clean...from the inside out~! Not sure if that is what helped some...or perhaps it was the IV fluids. Whatever...that side effect was lessoned (NOT GONE-but NOT EXCRUTIATING!)

ELLIE...sorry they wont let you give the shot. You must be an RN?! I had to jump thru some hoops to finally get mine approved. the cost on the drug is around 4900. It turns out it is only manufactured by one facility and they call the money shots. When I read here that numerous ladies are doing it themselves I asked my MO. When I first spoke with the RNs....specifically the "NN"...her response was NO WAY. I wondered perhaps it was watching for side effects but on my last visit when she literally popped it and said BYE, I knew it wasnt that. My second thought was the finanicial thing...but since dealing w/the insurance and providers it is not an issue. After speaking to my MO and her approving us doing it AND much himmmming and hawwwwwing with the "NN" (more about her in a bit) I got approval.

My MO told me I was the first one in their office that had done it themselves. She was shocked that others were being allowed to do it! Once my RN hubby and I explained....and the insurance said NO PBM...it was a non issue. Perhaps you can present it to the MO in a form that it is becoming very normal for people to do it at home. Especially when they have to ride a great distance JUST FOR A SHOT! Another option is ask if they will allow a home health nurse come and do it! I wouldnt just stop at the first NO! Perhaps if you give you MO info that others are doing it successfully they will bend! Hoping for the best~! I do recall one of us...DUHHHH...can't remember...said her insurance REQUIRED her to get it at home!

...Good for you being able to drive yourself! I used to drive EVERYWHERE! Just jump in the car and GOOOOOOO! Now I barely get out of the house alone and then...not far. My DH drives me to all my appts and sits patiently. As long as he can play on his phone, nap, or do school work on his computer he's fine~I am blessed with that. I am thankful you had BIG ANGELS pull you through the snow!.I pray protection over ALL of those who are on the road in whatever form of disagreeable weather getting to the "BIG GIRL CHAIR" today (and always)!!!

Ladies~~~a thought~!Remember to keep track of ALL YOUR MILAGE and EXPENSES while going to and fro med appts! They generally are tax deductable if you have enough to itemize!

Like I said last nite...I am trying to catch up with reading everyone! So I am sending posts in pieces parts~

Ellen HURRAYYYY!!!! Glad you were able to give yourself the shot!!!!!!!!!!!!!!!!!!!!!!!!!! GREAT JOB! I and the syringe Q was answered! I seem to have a junkies goldmine of them! Between my port (huber needles), my B-12 and my Kitty Cats insulin...I build those things up QUICK! Most any hospital or facility will take them~! I still keep thinking how beautiful your smile is in that picture with your hubby~something to cherish!

Hope youre feeling a great today as you started yesterday! I pray that for us ALL! ENERGY, STRENGTH, HOPE, SECURITY, PEACE and a down-right WONDERFUL day!