April 2011 chemo

Hey gang.  Home from 3rd weekly Taxol/Lapatinib...SO tired!  Lots of love to all of you.  

Windlass, I felt SO good donating my hair!  I brought it to Friends Place at Dana Farber, they asked if I had a preference, and we said "Yes, for children's wigs."  How nice to think that some lucky kid will benefit from your loss.  My hair is far from beautiful, but I know some little kid will be happy to have a wig.  It will be less traumatic for you too--watching LONG hair fall out, I wasn't going to take that well, so I cut it off.  I know it's awful, it's sad, it hurts the soul along with the physical stuff, but it WILL grow back.  I know a few people with alopecia, and they'll never have hair again.  I'm not trying to diminish your pain right now at all--it's real, and it sucks, and you deserve every minute of feeling like hell over this.  And no matter how great the wig, or how awesome the scarf, it's not the same.  But we're all going to get through this.  We're all sending lots of love to you today.  

Hey, did I mention the insane ACNE that I have now?  Yeah, they call it a "rash," an "acne rash," and I call it uncontrollable zits all over my face and chest.  Nice, eh?  With my little boy haircut and zits I could probably pass for the paper boy!  When I said something about it being hard not to feel pretty, my hubby said, "But the only person in the world who it matters to (him), doesn't care at all!"  It's sweet, but it still stings to feel "unpretty."  

A year from now, we should all post pics of us dressed up as HOT as possible for dates with our partners!  

Lots of love to all of you gals!  Ain't this fun?

Cris 

i have the acne too! it showed up yesterday! waiting on the hair next, sunday will be day 14 soooo who knows. i brought my good clippers home from work this weekend so i could buzz it off when it starts to come out. my husbands clippers are really cheap so i don't want for it to go slow, mine that i use at work will take 2 seconds!!!

hang in there everyone!! ain't this fun girls!!! i have actually had a great feeling day!! not as tired today as earlier in the week. worked 2 days in a row till 6 it feels like such an acclomplishment for me!!!

Thanks for the kind words. I'll do my best to save and donate the hair they cut off tomorrow. I think half of it is gone already. I'll put it in a barette and resist the urge to brush today until I go to the "cancer salon" tomorrow morning. My sweet husband (who froze the cold caps, and transported them, and measured their temperature, and massaged them, and lovingly put them on my head all this time) is still holding out hope the rest of my hair will stay. I'm humoring him through my tears, but I am only giving my hair til tomorrow to glue back in.

Cellomom: Your comment about depression got immediately copied and emailed to my husband and best friend, both of whom thought I was losing my spirit after my first AC. I said "See, I'm not crazy, other women are feeling this way too!" Thank you, that was a godsend, and made me feel 100% saner knowing this lethargy and emptiness is chemo and not ME! Thank you.

I'm glad my experience can be of help.  My dh, of course, reminds me that I don't exactly become anything approaching my usual cheerful self (read: human) until day 8...  But still - a light at the end of each awful tunnel.

Windlass: Your hair sounds gorgeous. I've had long hair for over 40 yrs, and I love the mass of now-gray hair that's a 'map of where I've been'...but now my route has changed. So... I had my daughter cut it short as a step towards no hair, I've asked my kids to design henna tattoos for my scalp once the hair begins to fall out, and look forward to when it grows back...will it be the curly frizz it was when I was younger, or the wavy when I pregnant, or...I looked into donating it, but discovered that grey haiir, without its pigment, isn't wiggable (probably not a word, huh?), so a friend spun it with cashmere and silk into a ball of yarn that I crocheted as the brim of a cap I'll soon wear. Gotta keep breaking new ground. Hang in there.

profbee and pawprint girl,  hello again, and I am joining you ladies on the acne problem.  I have these painful bumps on my face, neck and hairline and scalp.  It doesn't itch, just feels like sore pimples.  The Dr. saw it and said it may be folliculitis, or a rash from Taxotere.  I am on day 10 since my first treatment, so am wondering if it has something to do with the impending hair loss.     I have an appt this tues to have it cut short.  My hair dresser was going to cut it
Wed. but I wasn't ready yet.  I still haven't bought a wig, but  am going to look again tomorrow.  On a good note, Yesterday and today, I have felt better than I have since starting chemo. For me, Day 6 was unbearable with bone pain and stomach aching.  Dr also told me that neulasta pain would peak and then side effects would continually get better each day.  He was right!  I am feeling so good that I have decided to make a trip to florida with my son to try and see the space shuttle launch next week!  Dr . said I was fine to travel, so I am taking him out of school, and my sweet step-daughter and her husband will come with to help.  It was really good to get on here and see all of you hanging in there and supporting each other.  I hope everyone continues to feel better each day.

Hi everyone.

Welcome, Kat.  Best of luck, hon.  We're all here for you.

Trail2, did they give you anything?  My doc had already given me a scrip for Clindamyacin (sp?)...a topical gel.  The acne flaired up, and then it started to lessen..although now it's on my chest as well..ugh.  But I started the gel today, and I think it's getting even better.  The nurse warned me that it can become really intense and all over your body--great.  And even cause them to drop your medicine down a pill...but it's really common with Lapatinib that I'm taking. Mine are totally sore pimples--see if you can get the gel.  There's also an oral antibiotic they give if it gets really bad, but I'm not there yet. 

Jacki--I adore that you wove your hair in--that's awesome.  They'll have to pick out some grays from my donation, but not too many.  

Merilee--one of my dearest gfs sent me a gift certificate for Zappos.  I've got my eye on some pink heels.  I sure don't have a pair of PINK heels, and this seems like a proper occasion to pump up a black suit!  

Pawprint--guess it's been on my mind.  An old friend from grad school emailed me on Facebook, and told me that she suddenly developed an immune system problem, and that no one really knew, but she's been completely hair-free for about 5 years now.  It was amazing to hear her courage, and I was particularly touched by her offer to help me paint on brows and find a good wig.  I always think that stuff like that is so tough when you're young.  Y'know, I've got a hubby who would love me through anything, and she's single--it just reminded me to be so thankful for all I have.  NOT that it doesn't BLOW to lose your hair!    But I guess the idea that I will have hair again was fresh on my mind.  

But Windlass, I sure do hope after all that time and money you get to keep your beautiful hair!  Truly, I'm rooting (ah!  No pun intended!) for you!

I can't believe I'm awake right now.  It's after midnight, and we have friends visiting tomorrow.  WHAT am I thinking?!  Ah yes, about my cancer.  ugh.  Hubby and I had a bit of a rough day--he's quitting smoking (again!), and he's taking some pills for it...and he cheated today.  I've been super supportive (as much as I can be when I just don't really GET it honestly) in the past.  He quit immediately and for years when I was preggers with our son.  And now, when I have no choice but to do the hard stuff--to fight cancer and smile and work through chemo, etc., he's giving in and cheating and having a smoke.  It just really pissed me off.  And not AT him really, because I know it isn't easy and he's trying, but at the idea that he has some sort of choice here.  Christ, our kid is not yet 5.  One parent with a potentially life-threatening illness is enough.  I actually had the thought that I never would have had my perfect angel, love of my life child if I thought that WE wouldn't be able to raise him.  I believe my prognosis is good.  I'm just at stage 2, that's good, right?  But, I guess even entertaining the thought that I wouldn't be here for him has me up tonight.  I did get that trashy novel finished though.    I probably should have done some actual WORK.  Stupid.  ugh.  

Okay, I think I'm going to turn on the TV.  That always zonks me out.  

G'nite friends.  Sorry to end here on a downer tonight.  

d--I'm on different drugs (Taxol and Lapatinib), but my regular days are Fridays--and my onc is not in on Fridays.  So, once a month, I do it on Thursday instead.  It hasn't been an issue so far.  I just felt every SE a day earlier.    I can't help with anything else though.  Sorry! 

Hi everyone, had 1st A/C wednesday, very fuzzy head on thursday, kept getting things mixed up.  Worked yesterday but i only do 9 - 2.30 so not too bad.  Didn't dare drive in case fuzzy head came back.  Was a bit manic with the steroids and my bipolar, just have to keep on top of that. Sorry to hear some of you are not so good at the minute, hopefully you will pick up. 

Take care everyone. 

Determined

Don't suppress those tears. There is a grieving process that happens with this diagnosis and you are better off to let yourself cry when you need it. The last thing you need is to carry all of that in your heart and head. Not good for the immune system, for one, which we need all the help we can get with.

For me it was crying every time I told anyone I had to go back into treatment. Or anytime people would be loving and supportive would make me cry too. Luckily my friends and family know me and take it in stride.

Then you get to a place where you start to take charge and make decisions and you find your power again. "Determination " is a good word for it."

When I cut my hair short it helped me see that I actulally looked better with it short and so now I am not so freaked out about it. I was  at first, and It was a major fear.  I did not loose my hair when I did my first 6 cycles of CMF last year but was prepared mentaly for it. I have had so many complements on my short hair, so many people told me that I looked 10 years younger and that felt good after all I had been through.

I am going to a scarf tying class on the 27th. I figure I might as well have fun and maybe play up my dormant "Hippy style." I grew up in the 70"s LOL

Felt good enough to work out this morning. It really helped. I will try to ride my bike later.

thanks for responding to my questions ladies. if anyone else has something to add, keep em' coming. sweetcorn...(ooh, i like that name) that is not a little thing! seriously. i usually get my hair done every 2 weeks and i have been going to my sylist for over 10 yrs. before i  logged on today, i just sent the assistant (her sister shampoos my hair) a text telling her NOT to give all of her attention to everyone else...to save some for me...the head massages..etc. it is a running joke btwn us b/c i always tease her about spending more time on others than she does me. she does not do that, but it is our exchange of banter.

anyway, it is not stupid......esp when our hair is so much of our lives (for many of us)...it really is. 

smile. i am just trying to think that next april, i will have hair and i will be healthy. in no way am i minimizing your feelings. think of this as a hug, as i too feel/felt the same way. wheeew. this whole thing is a trip...isn't it?  and trust me, i was searching like mad about cold caps finding anyway to avoid this. it certainly did not help when the onc said to me "so, you are going to be as bald as your husband." i was thinking, really, really fool...? did you REALLY have to say it like that?  some are good at what they do, but they lack that sensitivity gene or something. boy,,,,,,,so yes, i will prob be back on this board freaking out  and i will need support. i am getting my hair cut before it come out (thanks to the suggestions on this board). i am hoping to mitigate the trauma.....if that is even possible. 

btw, in chicago, there is this one vendor that comes to the farmer's market down town and they have the best, best sweetcorn..i think they are from michigan. 

ok ladies i think my incision is infected!!! i really don't know what to do about it over the weekend if i should call or wait since i have to go back on mon to the onc???

i just did..thanks i never know if i should, like i am bothering them ( i know its there job) but thought i might want to since it could mean my boob might rot off lol.. so not funny...it has not really gotten any better in weeks now. saw the surgen the day after i had chemo and she said it would take awhile but it is taking forever.hopefully they will call me back soon

Is anyone on facebook?