August 2013 Chemo Sisters

lovewins

thank you SJ....i really need to read those scriptures...i have searched the web but these are very appropriate for us...God bless you...m

SewStrong

mankatostate, Take a photo, download it onto your computer and save it to "my pictures". Then, on your phone, you can browse your documents and pictures and upload it that way.

mankatostate

Sharon...I have no idea where my cord is to down load to the computer is. I always just post on fb and then I can pull it up on my computer. However...a bald head...not ready to post that on fb. :-) I might post a picture of me and my wig/hat and change to that.

gavinsgrandma

lisasp, thank you for the compliment, yep I am a grandma and the highlight of my life was watching that beautiful baby boy come into this world. Crazy as it is  I had my bx on his 1st b-day and got my dx the day after:-( I am fighting for him because i refuse not to watch him grow up!!!!!!!!!!

SewStrong

I'm with you, mankatostate. I'm not ready to post my bald head on facebook. Too many of my teenaged students are on talking to my granddaughter on my phone. I might put one on this thread, but I have to see how I feel. I may post it after I cry for a week or so. It's going to be traumatic for me.

SaltyJack, I agree. God will use suffering for his purposes. I can see it through this cancer in my own family and friends. It took me a little time in the beginning to get my head on straight and let God have it. I was driving myself nuts, but once I turned it over to the Lord and left it there, I received a peace about it and it hasn't left me. Gotta get to bed. Subbing tomorrow again. Need lots of sleep to deal with the kiddos.

candi07

FMG, happy birthday!



Not having a good day, it's day 14 post first treatment and my hair is coming out in big clumps. I will probably be bald by the weekend. If I hear one more person say its just hair get over it I'm going to scream. I know it's just hair and the least of what we have to go through but it still makes me very sad. Second chemo tomorrow, can't wait to get it over with then only 6 more to go.



Praying everyone has a good night.

lighthouselady

{{{candi}}}  It's not "just" hair!  I hate that.  That was like the lady at my MO's office telling me it would just be easier to lose my hair (than mess with the cold caps).  I was like, "Ok, YOU lose YOUR hair then!"  

Rayna - I am a HUGE researcher.  I honestly look things up to death.  LOL   So I have been more than prepared with information all along this journey.  It's a little frustrating, though, because I think a lot of doctors are used to patients who listen and learn from them without knowing anything themselves.  I feel like my MO would prefer if I was a little old lady who had never heard of the internet and just went along with what he says because he's the doctor.  I want to know everything I possibly can and have learned SO MUCH - just little tips like the Biotene mouth rinse and chewing on ice during chemo and emra cream for my port.... my doctor's office told me NOTHING like that.  So all of the little (and big) things  I'm doing to make this journey easier for myself, I've found out on my own.  And all of the medical stuff, what the tests mean, what the side effects are, pros & cons.... I've got it all!  My hubby sometimes tells me to "give your brain a rest" at night because I spend so much time online.  Knowledge is power, though!

I have a weird headache.  Not sure if it's a SE or hormones (my period is sort of here, sort of messed up from chemo), but it's really on one side of my head & kind of my neck.  Not my usual type of headache.  I don't know if it's some sort of bone pain from the Neulasta?  It's the only part of me that hurts, though, and Tylenol and Ibuprofen are not touching it.  

Gashgold

Hi all,

I'm having a hard time keeping up with everyone, so hope you are all doing better today than you were yesterday and welcome newcomers!

Day 16 and hair might possibly be starting to go.  But I'm trying very hard not to touch it as I want to get through this day of school with my hair on.  I've had so many compliments on the Miley Cyrus look some kids are going to find it hard when they realise...

A Silly Idea...what if I got a big can of hairspray and sprayed on a really strong hold...could I lift it all off in one go??  Perhaps even use it as a wig? 

lovewins

Awwww...Candi...I can't even say I know how you feel cuz I am day 2 post chemo....I feel for ya though...for me I think it will be hard cuz everyone will know.  (((((((Candi)))))))  Wish I could slap that cancer in the face for you.

lovewins

Gashgold...let me know how that works out for you...LOL. I will need it in 10 days. (((((( Gashgold)))))

Cutiekool

Awesome. , happy 50th. We are strong and will get through this...

mankatostate

Gashgold...LOL love the hairspray idea!

Candi07...I hear you about one more person. I know they are trying to comfort us...but let us be bummed about our hair...yes say it won't matter, but also acknowledge that it sucks!

ForMyGranddaughter

HVV, along with the chemo, foods tomatoes, garlic, sauce, spicy foods, etc. can make the acid reflux worse.

Will our hair continue to fall out as we get more infusions?  I have about 15% of my hair left; no new hair fall since last week.  Just wondering.

Thanks for sending birthday love my way!  I really appreciate it.  This is a wonderful group.

If any of you will be in NJ on Friday, September 5, 2014, let me know so I can invite you to my party!!!

Did you know that iron helps with fatigue?

lovewins

Would any of you mind sharing your thoughts on my question...I can't believe I just thought of this now?

Question...i have never been on short term disability before...i usually play bingo on friday nite now i think i w ill be too tired to play anyway...but does this mean i can't do anything like shop, go out to eat with friends play bingo...etc?  am i suppose to just stay home all the time?  Thanks for any input...M

lighthouselady

lovewins - My doctors said that I can do whatever I feel up to doing, within reason.  Obviously being around crowds isn't good for our immune systems, but I still plan to go out to eat, go to my kids' games, etc.  If you're feeling bad, then stay home.  If you're not, be smart.  Wash your hands, avoid getting too close to people, etc.  But still enjoy life!

mankatostate

Lovewins...Good question. I was on short term disability when pregnant and I don't remember that I couldn't go out. I think as long as you have medical reasons (as you do) you should be fine. I guess it might be worth checking on though. I was told during my good week I can do stuff like that. I plan to go to my card club this weekend, but I was in the normal range for all my blood work this week.

Martie1228

SaltyJack: "A recent result of a comparative phase III study on weekly paclitaxel and 3-weekly paclitaxel showed the superiority of weekly administration in terms of response rate, time to progression and survival." The clinical trials are finishing up phase III, but have essentially shown this result across the board. Have you checked out Herceptin's website? They actually show percentages of the trials, and it's quite a difference. I think that it's more of a hassle to go every week vs. three for a year. Because of several factors, I have a high risk of recurrence and it helps that it's only a 30-minute drive for me.



Sharon: I SO appreciate those who love and care for our special needs children. We have a 25-year-old severely retarded daughter who LOVES socializing (now goes to a special program for those who have aged out of school). She's 24/7 care (though is ambulatory 👏) care, but is an absolute delight (most of the time😇😈) to all who know her!!! Enjoy your day! BTW, she just laughs to the point she can hardly catch her breath when she sees my bald head. 😍

lovewins

Thanks Ladies...I feel guilty like if I can do that then I am strong enough to work...I really think it's more emtional...to some degree except tonight I am exhausted and can't sleep.  I think I have an issue to get over and accept I just can't do chemo and work...thanks for your thoughts.

Cutiekool

Love wins, I am not working right now I am a personal trainer fitness instructor and a Boot Camp instructor and I am not going to put myself in that position to be around all of the people in the gym and all of the germs. I feel good at days and some days I feel bad I'm D2 out of treatment to and I'm really starting to feel fatigued and tired but can't sleep Due to the steroids I'm about ready to take some anxiety meds kick back and relax don't feel guilty for not working you need to take care of you you are the important one right now if you can financially make it without working I would do it I would definitely apply for disability good luck

raynaj

batcatlady: I also suffer from migraines so I can totally understand saying only a migraine was a relief, I have suffered a few in the last couple of days. Before cancer there had to be nothing as bad as a migraine, the house could burn down around me and I wouldn't care but add all the SE's of cancer and Wow. Glad to hear your doing a little better and sorry to hear you are having so much pain, I haven't had much but tomorrow will be my second Nuelasta shot so who knows. Have you tried that advice the others have given about the Claritin before, or something like that?



Can't wait to see your bald head when you feel ready, I also saved my hair to give to a company here to make a wig out of it for someone, figured may as well not waste it.

Love, Rayna

Martie1228

If anyone's wondering what it looks like when your hair comes out when you've already shaved your head... it looks likes spots and lines. My back is really spotted (with some quite large) and my hairline and sides have the next largest amount. The top seems to have more lines, so it probably would be thinner? I'm 23 days from first tx. (I did start with thick hair. Don't know if that makes a difference.) Is this similar to how it falls out not shaving your head? Just curious.

raynaj

Candi: I was so upset about losing my hair too but I think taking things into my own hands and being the one to decide when it left was liberating and after I had shaved my own head, it really wasn't as bad as I thought. I think if I would have let the cancer take it would have been harder. And your right "it's much more than hair" It defines us and makes us feel sexy, once its gone people know we are sick.



Has anyone read the Thread about Stupid Things People Say:

I think the worst for me is "Well, when you're done you'll have nice perky 20 year old breasts" Well, thanks so much but I would much rather have my saggy 47 year old breasts and not be fighting for my life.

What is wrong with people, are they dense or really think what they're saying helps.



What things have been said to you that made you sad or angry?

Love,Rayna

Shalimar630

Happy Birthday FMG! Hope you had a wonderful day.

I'm not bald yet, but I had my daughter cut off it off short as I've been losing it the last couple days.

Cutiekool

Is anyone swelling up? I am and it's freaking me out. I'm drinking water like crazy and still swelling

naan1004

Lovewins, get the headache cked by onc as soon as possible.  Don't wait and worry.

Cutie, yes, from taking steroids.  Tell your onc or nurse right away

Cougarlicious

Hugs for all of those who need them!



Going in tomorrow for AC #2 - hoping that things go as smoothly as the first...I have a concert I want to be at on Sunday! I've been feeling myself up and it definitely feels like the tumor has shrunk; I'm hoping the doc says the same. Now I have this weird pain/soreness along the side next to my tumor breast...OB thinks it's just soreness from sleeping on that side or from picking up my toddler...can't help but feel a little nervous.



It's been a week since the barber shaved my head, and it's definitely patchy and yucky looking. And now it's at that prickly stage where it's uncomfy sleeping or wearing certain hats. I've been lint brushing it and trying to scrub off most in the shower...any other tips on getting past this stage to completely bald? I'm afraid to use a razor, hubby wants to try his electric razor but I'm worried about that too.

LisaSp

Cougar: Aren't you cute! Lovely smile on you and Martie. Definitely ask the MO about the pain.



My head still has some bits of hair. I won't shave it because I don't want any cuts, due to potential infection risk.



The prickly stage seems to subsided between some hair fall continuing and what is left growing longer. One reason I don't go 'topless' outside the house is I resemble a plucked chicken! lol



Blood check today. I hope for good counts and will ask about my next step; radiation.

raynaj

AAArrrgggg: Can't sleep, can't sleep, can't sleep, going nuts, am so tired but my body won't let me sleep. I asked my onco for sleeping pills but he said because I changed to A/C that I wouldn't have as many steroids to take so he never gave me any. I've had 6 hours going on 3 days.



Cougar: You do look cute, I just kept washing my hair seemed to make it come out quicker. I also shaved my head with an electric razor then a straight razor, one of the Venus razors, worked well, they have lotion on them. Even when I shave I still have stubble that comes back in, not that it would amount to anything just feels better shaved, in my opinion.



Cutie: I have swelling in my calves too, must be the steroids and the amount of fluid I'm drinking. Phone and ask your onco if its excessive and your worried about it.

Love, Rayna

itsmyjob

Good Morning!

Spent most of yesterday working and then sleeping so i didn't have a chance to check on you all.  

FMG Happy Belated Birthday!  Hope you had a wonderful day celebrating 50 years!

Nice to meet you TanyaF, you had a lot that sapped and drained you in the past year also.  Sorry you're missing your kids but maybe you can schedule a visit during a less susceptible time so they can see you're doing ok and fighting.

jnpsrn, I just had my second chemo on Tues and Neulasta shot on Wednesday, I seem to be nauseous  and constipated for the first 5 days after chemo, so I never associated the nausea with the Neulatsa shot.

Candi and Gashgold, the hair thing...smh... I seem to be having hair issues of my own, although my husband says I'm just a weirdo. I have always hated my super fine, poker straight, thin hair.  When i was asked if I was going to get a wig i said oh heck no!  I'll be darned if i'm going to have some flowing Farrah Fawcet looking wig that looks better than my normal hair ever looked.  So on day 12 I walked outside and the wind blew a few hairs in my mouth and as i tried to drag them away, there were a few that pulled away from my head and were hanging from my mouth, just about puked and made a decision to shave it off.  So i got shaved down to an eighth of an inch on day 13.  Day 14 I didn't see much of a difference in hair loss so i wondered if i had made a premature decision.  When I came upon my weirdo idea...I wanted to see what was happening, so for the past 3 days i have taken a sticky lint roller over my head to see exactly what was being lost per day.  They're hanging on the back of our bathroom door! lol

Lovewins, Healing is more than staying at home on the couch wishing you were well, do what makes you feel better and is within your limitations.  It will be good for your health, mood and soul to be with friends.  I am on an intermittent leave from work.  Twice a year, 20 of my friends and I go on a quilt retreat for 4 days, the next is 2 weeks away.  I talked to my boss at work and expressed how much i wanted to go but that I felt guilty taking extra time from work when they were being so accommodating to me regarding my schedule.  He said that I earned my vacation and personal time and it was my business to use it anyway I choose.  And you paid for your STD therefore you can use it anyway you choose.

Wishing for you all to have a peaceful day!

KateW

I am still pretty much a lurker on here with the occasional post but just wanted to say that I love reading everyone's posts! Seeing all of your beautiful bald heads gives me hope that my head won't really be all weird and bumpy when I do lose my hair. Today is day 8 of my first round... So soon. I love the Jesus Calling books and am usually amazed by how close to home the messages hit. All of your messages also help to remind me that everyone has a story and "never judge a person until you've walked in their shoes!" Thank you to everyone for their input on this link. If it weren't for all of our humor, wisdom and knowledge, who knows where we would be! You ladies... No... WE ROCK!



I hope everyone has a great weekend!



Kate