April/May 2012 Chemo hang out

rn4babies - One of my wigs was given to me by the ACS and I have 4 that a co-worker who had chemo 3 yeas ago gave me.  I don't feel guilty if I don't wear them, but I think I will look more normal.  I went out for about an hour and kept having the fear that it was going to pop off my head!  I came home and put on a do-rag that someoe haad given me.  It felt more secure, but hot and it goes over my ears, so everything sounded muffled.  I thought I would be more comfortable sitting around the house topless, but I feel so self-conscious.  I'm sitting here sweating to death and won't take it off.  I did buy something that I saw in Self magazine.  It's from a company called electric yoga.  It's a little cap that is supposed to keep your head cool during yoga.  I slept in it last night and it was pretty comfortable.  I have had a really positive attitude since my diagnosis in April, but this hair loss is throwing me off.  Not feeling so great now that I'm bald!  I keep telling myself that it's temporary and that helps.  

Does anyone else find that you get really hungry and then really full very quickly?  It's also driving me a little nuts.

Sorry to be so negative tonight.  

vballmom, NOOOOO!!!!!  

Fierro, still with the headache?  So sorry.

BGC ladies, butt!!!  And if you are going for your very last tx, God bless you!

I am so scared of starting the taxol and herceptin. I am afraid of my nails coming off and hurting really bad, plus all of the other side effects that could happen. I'm sitting here in tears. I know, I'm just a big baby. I am wondering if doing the taxol and herceptin is even worth it. The A\C just made me really tired and queezy. That wasn't so bad, but the things that happen with taxol are worse!! I have 12 of the taxol once a week for 12 weeks. OMG! I was reading what has happened to people that are on taxol and herceptin and what they have gone through. 

vball, sending good vibes. You've gotta get a break sometime! 

fierro, hope that headache goes away soon. They suck!

Marcia, I can't wear a wig. Too hot! I passed out when I had a do rag on. Way too hot! I swear they add 10 degrees! I personally go bald. I seriously do not care what people think. I only wear something to cover if I am out in the sun, which I very very rarely do. I am pale white, and my head is worse! haha 

My friend Jane, is the woman that was behind the Bald Barbie movement a few months ago on facebook. Well, the Barbies are being made, not sold, donated to children in hospitals. Moxie is making, and selling, Bratz dolls with a portion being givein to a charity. They are in Toys R Us now. I am babysitting my sister's kids on Thursday. They are 4,5 and 6. The 5 yr old is having a tough time with me being bald. So I will be taking them up to get them each one. They have boy dolls too.  Anyway, she also started a Scarf Project as well as a Dome Decorating Kit thing through her Beautif and Bald site. She takes donations of items and sends to people who are bald due to treatment or illness. I never asked her for one, but today I got mine in the mail. It had a new testament, two scarves, a baseball hat, a couple little squares of body art, stickers and washable markers. I think I'm going to have to use those markers and draw something on my head. Do it up. haha But, if anyone wants a kit, or wants to donate something, let me know. Maybe I'll donate my wig! Put that sucker to good use. haah

Pauletta, we are in this together!! I started my first taxol today. I agree. I had it easy throughout AC and people keep saying taxol will be easy, but I see those same posts that you do. Doesn't look easy! I do not want my nails to lift. I never polish my nails. But I did tonight. Im also getting bag balm to rub into my ands and feet every night before I go to bed. I'll wear socks and gloves to let it soak in. Massage that stuff good to get the circulation going in the hands and feet.

mary, good luck tomorrow!

dance, I've been living on fruits when my tastebuds went kaput! Love a fresh fruit salad!

I made it through my first round of taxol. They gave me benadryl and something for heartburn in the port in addition to the steroids and anti-nausea stuff. As soon as the benadryl started dripping my eyes got heavy, my arms got heavy and I was out like a light. Slept for a good hour. Because it was my first one, they watched me as it was going in to be sure I didn't have any kind of allergic reactions. I was good though. Hope it all stays that way.

Dance - I buy this dressing, love it http://www.briannassaladdressing.com/product/rich-poppy-seed/

Vickilind - what's the fire situation near you?

Marcia - try not to let the hair thing make you feel self conscious, you are in a great club, bald ladies rock:):)

Pauletta - I can't address taxol since it's not in my regimen, but the herceptin that I get 2 weeks in a row between my TCH has been easy, easy.

Mary good luck tomorrow and wishing you no SE's.

Hello all!



I got Taxol #2 today. The good news is that I had no reaction during the infusion. The bad news is that I was there for 8 hours! They spent the first 3+ trying to decide whether Or not I could get anymore taxol given the rash last week. Originally they were saying no, which was going to mean no treatment today and a tumor board review to decide if I just stop altogether or switch to a new drug. In the end they decided to go for it. They added more steroids to the infusion (yikes) and have me on Benadryl and I have strict instructions to call at the first sign of a rash and then head to the ER. I'm really hoping that it turns out it was some strange reaction to some food or change in my routine and that I will be fine this time. I think I would rather just try and muddle through 2 more of these then switch to yet another new drug.



So it was a long day and now I have so many steroids in my system that I may never sleep again but so far so good.



Btw, other than this odd rash, taxol has been much much better than A/C for those asking. I've had some minor toe cramping and bone pain that tylenol knocked out. But no indigestion, constipation, nausea, etc. which were major issues for me during A/C.



Good luck to everyone!



Rose

My fingers were feeling swollen Saturday so I took my anniversary ring off, just left my narrow band on. Guess what I can't find? Looked under, over, behind, upstairs, downstairs. Looked in garbage cans. No can find. Not a big fancy ring but i liked it. I am so mad at myself and feel it is a bad omen. I know it has to be somewhere but man I could nt find it and may never. Ruined my evening.



I cut my nails short too. Nurse says Advil can help on days when it really bothers me. Says it lasts through chemo and sometimes till new nail growth comes in...Like others, I don't want them to fall off!

My feet are tingling slightly for first time. Hope it is ring stress and not neuropathy.

Rgina:  I love that salad dressing.  Romaine, strawberries, blueberries.  What a great summer salad!

Mary and any others I may have forgotten:  Good luck in the BGC today.  I will be thinking.

Sandi:  Kudo's to you for being brave enough to go out sans wig/scarf.  I wish I had enough nerve, but can made it to the mailbox at the curb, and that's about it for me.  I know what you mean about kids being afraid--my friends came over right after one of my rounds with their three kids and they kept staring at me.  I then pulled out my wig (told them her name, Giselle) scarves and hats and told them I was more comfortable without it.  They were okay.  I think they were more concerned about me being sick and the bald head to them was a dead giveaway.  

Wishing everyone minimal S/E's today.  I am off to the showers and a 9-hour work day! (last day of work is tomorrow before the last round on Thursday). 

Lisa:  You will find your ring!  Where could it have gone.  Sometimes it just takes another set of eyes or another visit (maybe with a flashlight) to find it!  

Pkate - looks like you and I are on the same schedule!  I have #3 of 4 Taxol today.  My taste buds are still whacked but I am fortunate to get a enough back by the end of the two weeks so that I can enjoy most things over my last ~4 days.  As far as full recovery of the taste buds, I have a friend who ended her chemo 6 weeks ago and she says she is 90% back to normal now....something to go on.  My nails seems to be holding in there aside from my 2nd toe which I kicked my husband's poorly positioned bicycle helmet with.   That hurt and still hurts.  I may take the epsom salt soak advice as I noticed some dead skin on my feet last night.

Marcia!  I was joking the other night w/my husband that he needs to make me an "ice hat" to sleep in!  Can you please send me the link to where you ordered your yoga cap?  I assume it works keeping your head cool?  AND,  I hear you on the bald thing.  I was okay with it for a while but it is wearing on me now.  I had 2 close girlfriends who both shaved their heads with me back in April.  The both have the cutest short hair now and I find myself jealous and pissy about it.  I still do not own a wig but one of my chemo pals is bringing me a blonde wig today to try.  I cannot see myself wearing a wig as I have never been one to be concerned about my appearance.  I dont own a stitch of make up or a hair dryer, curling iron, hair spray and I typcially wore my hair in a pony 97% of the time anyway (I do have 100+ pony tail holders!) So I really dont know why I am so pissy about the hair loss...but apparently after re-reading this rant, I am.

Started the steroids yesterday (BGC today)...up at 3:30am today but I cant complain too much as I did sleep from 9pm til 3:30 withOUT sleep aids, ha!  I do try to get up early on the steroid day and take them at 5am and 11am.  I also get in some exercise as long as I am up for it (yesterday I did 1 hour strength and 1 hour cycle and 45 min at Walmart!).  I try NOT to nap (I hold down the sofa, but try NOT to sleep!).  When I am not keeping the sofa from running away I stay somewhat active to be sure I can sleep a bit...my 2cents on trying to get sleep on the steroid days...wear yourself out....I am sure that is NOT Dr. approved but it works for me.

Headed to the pool for a swim at 7am then to the BGC at 9:15 - - I'll be back on here, so hopefully you all wont be sick o'me by the end of the day!

Ladies,

Another website for cool stuff for bald ladies: www.headcovers.com (HeadCovers Unlimited) : scarves, headbands, padding for under scarves or wigs, etc. Lots of variety. Everything but wigs. . . I did some retail therepy online there earlier today.

PS I lost my engagement ring 20 yrs ago too, I may not be too good at rings....sigh.

Good day from the big girl chair! Glad I made it here today! My whites have rebounded nicely but I will be mandated to have neulasta for the remaining treatments Apparently, my neutrophils were down to 30 without it!

Good luck to melrose and anyone else having treatments today.

Got to the BGC at 9:15, treatment did not start until 10:15 as the lab was backed up with blood work...finally, mine came back!  Good to go...my WBC's are up, hemoglobin a bit low but nothing critical.  Feeling blessed about that and bummed about being here.

The wig my friend brought for me to try is blonde and fun, but I think it looks so funny!  I honestly dont think I can wear it.  And wow are those things hot, I dont know how you ladies do that, it's like wearing a wool beanie in the summer time!

Hang tough ladies in the BGC today!  Minimal SE's to all!