April 2013 Chemo Group

indenial

Katie - yes, I have trouble eating once the steroids wear off, nothing feels right in my body, my taste buds are off, and my appetite is minimal/non-existent. Last round I just had smoothies & soup for a few days, this round I am doing a little better thanks to being more prepared with foods I could tolerate! I also find I need nausea pills occasionally even though I'm on day 7 (and didn't need pills at all for the first 4-5 days).

Anne & Rockermom, it was day 15-16 for me that the hair really started coming out... it's a tough few days but then a relief that it's done, if that makes sense!

KimHam

Admittedly, there isn't a whole lot that makes laughing easy these days, but being a Disney Diva (I try to go at least twice a year!) that chemo roller coaster post was FANTASTIC!!!  Thank you so much for the true Laugh Out Loud!

I appreciate all you Pink Warriors - all strong, happy, whiney, and down.  The sharing of your feelings helps validate mine. 

Hugs to all!

CarolA5587

Love the chemo coaster ride. Not much there that I can't relate to. Love it!



There was something almost calming about shaving the rest of the hair off. Strange but I am terrible at waiting for things that I know are going to happen but not sure when. Just get it over with already!



Kinda like now waiting for the next trip to the chemo bar. Coming Friday. Arrrgggh.



Thanks for sharing all of your experiences. Your support and suggestions are awesome.

Virginger

Congrats CarolA...

that's EXACTLY how I felt......and after I ran my Hand through that Peach FUZZ on top...WOW>..was GREAT...

Welcome to the focally challenged Club...can't WAIT to see how my Hair will Grow Back.,..

I'm now a FREAK about WATER..can't get Enough...Drink it ALL the time...the way I look at it, I'm FLUSHING those Chemo drugs outta my liver and kidney.

What started me on this whole 'ride' was  a best friend from HS dying at 50, from Liver and Kidney failure, so that was All the MO had to say to me...water will FLUSH out the DRUGS...

Still fighting to keep this damn tooth in my head...but @ work and plugging away.

Peaceful nite my Sister Warriors~

shipsgirl

Wish I could drink water like that.  I have to struggle to drink every drop. I'm so sick of it and I know I'm not drinking enough.  I've tried everything to make it more palatable.

MinusTwo

Shipsgirl - I agree about the water - really hard for me to get even a minimal amount down.  Simply Lemonade seemed OK last week.  Tang mixed w/iced Green Tea & extra water was OK.  Nothing was great.

Blood work back OK so 2nd chemo tomorrow.  Should be over 8 hours since I asked them to push more saline.  MO said to take Clairitan for the full 10 days I was in pain last time.  I'm staying the night by the med center because i have to be back for Neulasta shot the next day. Looking forward to room service (right-I can order more cardboard to suit my tastebuds) and a friend (jokingly) told me to be sure not to pick up anyone in the lobby bar.  Sure-in my turban w/no hair and my ice chest & chemo bag dragging along behind me?

Loved the roller coaster.  That sure is what we're all doing.

Speedy4

Katie~ I was having the same issue. Have you tried an antacid? It helped

rockermom66

indenial tomorrow is day 15 for me, we'll see what happens! I keep tugging on it and nothings coming out. Am I late?

I have a hard time drinking water like other ladies here... I even know that if I drink more I will feel better faster.. I am going to really force myself to do this. My friend had two huge batch of fresh green and beet juices delivered to me, I definitely didn't have a hard time drinking that. Maybe if we just drink what we like as long as it's relatively healthy it's OK.

6cats

Shaved my head on Saturday... I was getting obsessed about "when" it was going to happen. Today hair started visibly falling out from everywhere... starting with my nether regions! Day 12 for me.

ACS gave me some turbans, hats, etc... the one I wore today was hand-sewn and stuck up funny, so I turned it upside down, tied the bow on top of my head like "I Love Lucy".

Surprise... my glasses don't fit right without my hair... went to Wally-World, plopped down on a chair at the vision center, whipped off my hat and told them my glasses needed adjusting... they guy didn't even blink! Told me to wear them a couple of days and come back and he'd work on them again if needed.

Round 2 on Thursday for me....

rockermom66

6cats, maybe I should look "downstairs" and see if anything is happening. I'm so anxious!
I've got crazy wigs, hats and scarves waiting for me!

indenial

Rockermom, the hair holds on tight 'til it's ready to go! Or at least mine did, I almost thought it wouldn't fall out after all, but it did! (Most of it... still some yucky-looking stragglers.) Oh and yes, the downstairs hair did fall out a few days before the head, day 12 or 13...

I am great about drinking water the first few days but once I get that gross taste in my mouth I just can't... I keep eating ice cream because they told me anything that's a liquid at room temperature counts! LOL!

Virginger

ok..down stairs went a little..BUT WHY are the LEG hairs STILL hanging on for DEAR LIFE....ugh...was hoping THOSE would fall out too.....but I've just gotten to the point..i'm a 6FT tall BALD chic..DEAL with it...lol

it was so pretty for the first week..now..i'm noticing little bumps..so glad my cousin sent me the knit cap I can change out with different bows...tonight had a BIG OLD Rhinestone right in the middle....

Well worked a Full shift at work tonight..Crazy early shows...flooding here and 80 folks were kicked out of their homes..for my 5:30...had our main anchors out in the field..Fun Times... Live with lady in Ohio about the women held for 10 years, CREEPY, and a chic from Network LIVE from LA talking about The Voice...fun times in TV ladies...

Well my Pillow is calling....and got more water to drink 

Sweet dreams my Sista Warriors...

MinusTwo

oh Virginger - what an interesting job you have.

Rockermom - I love it - "am I late?"  Sounds like we're talking about our "little friend" in high school.  As for hair - we're on similar "cocktails" and I still have a lot left.  I had a "burr" cut on day 15 after I found the nether regions shedding - so it's 1/2" long all over.  That seems more manageable but is shedding very well on day 21.  Takes 3-4 passes with the lint roller morning & evening to clean head & inside of jersey cap in addition to some good hard head rubs in the shower & outside inbetween.

And yes WHY is the hair hanging on?  Darned if I'll shave !!!

6cats - I discovered today that my wig really pushes on the glasses arms - very uncomfortable.  Glasses can't shift since they're progressive bifocals.  Hmmm.  maybe a trip for adjustment's a good idea.

rockermom66

Ok, well I just checked downstairs and everything is still holding on.

I need to shave my legs and let's not talk about my moustache! I'm italian
I was letting everything go because I don't want to risk a nick and I thought it would all be going soon.
I'll just be au natural as long as my chemo will let me.

I'm having a party as soon as my hair starts going. It's the most exciting part of this for me!

Virginger

MINE was GREAT only invited folks I wanted to be there...and did it @ work so I didn't have to CLEAN up the MESS...loved it...and the support was overwhelming

now my brother has started a 'hat' campaign for me....Ov Vey...but it was cool to get a package delivered from Eli Manning with a personal note..and Nick Saban from Alabama, even Gus Malzahnt from Auburn...

off to dreams.... WAY past my Bed Time...

Irene1975

Oh ladies you are all always the right dose of medicine for me. Some of your stories make me smile and chuckle a bit, thank you. " hair down there" ... " am I late" lol



I am 13 days out since my first treatment and finally today I feel better! As long as the good streak continues, I will suck up going to the next one. Things were so hard for so many days, I just didn't think I could do it again. I finally found something I can taste in water. It's the dasani mixed berry. You squeeze drops in water to taste. It's really good - or maybe it tastes amazing because it is a taste, I don't know, but I can down a gallon of water in no time. Highly recommend if anyone is struggling.



Still have the everywhere hair, except my head hurts. Feel like I am in a kiddie fight and someone is just pulling it. See what the weekend brings, or the next 24 hours. Seems to be the mark for most. I hope everyone has a good happy healthy day. Hugs to all.

Pattysmiles

Thank you all for the hair stories.

As I was driving to Chemo I saw a mannequin with some pretty white and pink hair. I wanted that wig,so the next day, when going back for Nuelasta shot I went into the store and the woman was able to sell it because she had stocked different wigs and could give me her last pink/white. This was a "hip" type (aka, expensive) clothing knock knack shop for kids/teens.



I wanted the wig so I could wear it to a big family party Memorial Day weekend. I really don't want to be in pictures with some UGLY wig, and look back and remember my cancer that way. I would prefer to have a little fun. I do have a sense of humor, but the colored wig is so not me. I am looking forward to a little re-invention. I'm grabbing this opportunity to explore!



My daughter, age 10, is adamant I cannot wear it near anywhere her friends would see. That's ok.



Also picked up two pairs of oversized sunglasses to go with the wig and bandanas. Why not!

6cats

MinusTwo -- the wig people told me to wear my glasses on the outside of the wig cap rather than under - it does feel much better.

Who would have thought that hair loss could be so exciting...

BeHereNow

Good morning!



The hair conversation sounds like the running commentary in my head! I have made it a science experiment (LOVE science!).



I am patchy on the top, have my eyebrows and lashes, no more underarm or leg hair (bonus!), sparse in the area that shall not be named, and no more hairy knuckles...just kidding



My stomach hurts every time I eat. Except three foods, if I only eat a little: mashed sweet potatoes with coconut milk (yum), stewed lean meats, and roasted veggies. Not bad!



I still feel unsettled about my MO, my diagnosis, and my treatment plan. Long story, but the bottom line is they are trying to dismiss me, even though I am the one who found things in the pathology report they missed (including micromets in SLN and multifocal BC). I'm *thinking* I should get a second opinion on pathology, diagnosis, staging, and tx, but I'm *feeling* so tired. It's only now that I'm beginning to understand the ramifications of the MOs lack of thoroughness. It's infuriating.



Obsessive thoughts, nausea, fatigue.



The positive is, it's beautiful where I am, and I'm sitting on the shady deck listening to the breeze and the birds.



Glad you're here, Sisters!!



XO

rockermom66

Glasses on outside of wig, I must remember this!

Pattysmiles… that sounds like a wig I would wear. I ordered and received a short anime style baby pink wig.. I already have a hot pink bob. My own hair has been pretty much pink for the past year up until a month ago. Yay pink! But I hate that BC pink crap...

Well I ran my fingers through my hair vigorously and 14 hairs came out! I made sure they weren't cat hairs either.. I think it's the beginning!
I'm glad I'm working today otherwise I would probably be sitting and messing with my hair all day.

Jen987

I went to get my labs done on Monday and my WBC went down from 2.0 to 1.6. Weird as I feel better now than even before chemo. So unfortunately they gave they me my first dose of Neupogen. I am to continue giving myself 3 more doses, today, Friday and Sunday. Just finished injecting myself. It wasn't too bad at all. I didn't do well on Neulasta so we're going to try this instead. The pain yesterday wasn't nearly as bad as the Neulasta. Probably because you only get a small dose each time. My 3rd chemo is Monday so I hope my counts go up by then so I don't have to postpone it. Hope everyone is doing well and taking care of themselves. Stay strong.

Jen987

Thought you ladies might like this saying. Wouldn't it be nice if life were like a DVD...And you could fast-forward through crummy times!

Virginger

A to the Men on THAT Jen...

goingforward99

I decided to go all out and have a "Head Shaving Party" at the salon. I am so glad I went through with it! It was a tough decision; some people seemed shocked by it and couldn't understand why I wouldn't just wait for my hair to fall out. If I had been home alone, as it was, I would have cried. Instead I can look at the photos and remember how much fun we had and how wonderful it was that all my men did it with me. Of course now when my hair actually does fall out in a few days, I can just sweep it up with a lint roller. 

My next chemo is tomorrow, I seem to be on the same schedule/treatment as 6cats except the Herceptin 

because I am triple negative. Well, wish me luck tomorrow, I will post when I feel well enough!

I also have decided to “come out” of the cancer closet on Facebook soon, maybe today…

Virginger

LOVE that PICTURE Irene!!!! Triple Neg here too...<3

Irene1975

So I spoke to soon, my hair is now falling out. Did anyone else's head hurt?

indenial

Yes, head hurt like crazy, still does from time to time a couple weeks later. Getting more hair out (in the shower or with a lint roller) helped the pain but then I sort of became obsessed with pulling out the unattached hairs so I've been trying to leave them alone!

Tip of the day: If you have the bumps on your scalp (they are like itchy acne, not sure if it's from the steroids or the chemo itself but happened both rounds about 6 days post-infusion for me!) try rubbing hydrogen peroxide on them. It really seems to be helping!

Oh and and I found something I can stand drinking!! Mint tea!!! My husband just made me a cup and I nearly cried because it's the first thing I've had to drink all week that didn't taste like garbage!!

shipsgirl

Still waiting for my chemo brazilian. Still have head hair, thanks to cold caps (day 22).

Juice popsicles seem to help me with liquids.  They have big flavour to get past the "hairy tongue".  The thought of plain water is just off-putting.

anne11595

Going forward love the pic. Was it shave orhow short did they go. Im sure I will be doing something before the week is out! I am triple negative also,but in a clinical trial so I will start hercepti when I start the taxol.

Be here now, my self I would get a second a opinion.You dont want to second quess your self and want is going on with your life!! So many people do get a second opinion. Take charge of your life as much as you . Do you get heart burn that might be messing with you stomach. So sorry your having a hard time):

Had chemo today and after 3 hour nap,up a doing good. To all my meds I could take and a very nice purple haze!!!

anne11595

I do have chemo brain just read what i wrote hope you can read it!