2005 ROCK-TOBER CHEMO GIRLS

debbie444

I shaved mine when it got to the point I could pull it out. yes I cried - but its one more thing that cant happen to me now! i am at the stubble on the pillow point too - how come each morning there appears to be more than there was on my head the night before??????
Can walk around the house with nothing on my head but the only people who have seen me have been my husband, kids and dad. My dad cried - he found it sad that i had less hair than him !
I encourage all of you to get in touch with Timtam via private message and ask for the passwords to the bald pics site. It really helped me to see pictures of fellow fighters without their hair - beautiful women, not sufferers! Thats what gave me the courage to cut it off!
Finding 2nd chemo more tiring - slept 16hrs on Friday!
Hope we all have a good day
Debbie xx

RoseMarie

Graycie- I had hiccups too after my first chemo. I didn't think hiccups could actually be a side effect but after hearing it from you too I guess it is. My hiccups lasted for about 3 days. I had heart burn too but not terribly.

Tracy- I didn't think I could do it either but here I sit with a bandana on my head! I KNEW I wouldn't be able to handle watching my hair fall out in clumps - I'm 10 days post chemo#1 and still haven't lost any hair yet, though!

Fear...my two boys woke up today with a fever and terrible sore throat!!! I hope it's not strep!!!! I'm scheduled for chemo #2 on Friday!

TracyNY

My hair started falling in droves yesterday but it is not as traumatic as I thought it would be. Perhaps its because I have sooo much of it and its not evident as yet but its kinda soothing just brushing it away slowly and bidding it farewell. By the time all this sentimentality gets old, we'll be firing up the clippers!!

Is anyone else with expanders in experiencing some wicked hardness after chemo sessions? They are bad enough on their own but after an infusion they tend to turn into rocks!!

AnnaM

Yes, shave it off. You will love your head. Take this one opportunity to get to know the shape and the feel of your head; it is truly wonderful to know there is such absolute beauty under that hair!



I sometimes wake up in the middle of the night, slightly disoriented, and it takes me few moments to situate myself in what is now my every moment: having gone through breastcancer and living in the new body I have. When it hits me I absolutely melt. I think back to just four months ago and wish I had really appreciated what I had: peace of mind, confidence in my health and strength, two breasts with feeling, a free calendar that I could fill as I wanted, the knowledge that I could come and go as I wished, a sex life, energy to walk and exercise, an appetite for everything. I am learning to take good things out of this experience, but it truly has taken over my life. I think of nothing else it seems. Yes, it has brought me closer to my husband, but I liked the way we were before, too. Yes, I am thinking important thoughts all the time, yes, I am closer to my spirituality. Still, I wish I didn't feel so old all of a sudden. I wish I could stop missing my droppy old breasts that nursed my daughter through 14 months and always loved to be touched. Maybe my side effect from chemo is sadness. I know I can't go back, but the sadness is there.



Anna

Graycie

Anna, I do believe the side effects of chemo make you sad....I was never like this before I started, I thought I was doing good and was staying strong.....It is probably just the reality of it setting in....Like you, I want my old life back.....Today I feel a little better, at least for the moment so I am going to try and pull myself together and maybe get on my treadmill or take a walk that always seems to help...Grayce

Nancy-SanDiego

But even if you don't loose it all, do you want that look (another traveler called it a an animal with mange). I see so many that have said they were so glad they took control and many others talking about how traumatic it was to find big tufts of hair on the pillow. Got your wig or your scarfs and hats? Then, go girl! (And enjoy days of feeling how soft and velvety the back of your head feels).
Nancy K

karlahook

I'm worried about shaving my head...everyone says it is so liberating...my problem is that I had a brain aneurysm a year ago and have a half moon scar from my forehead to behind my ear...not sure I want to see my bald head much less the scar to remind me of the brain surgery and everything I went through from that. So for me I would feel more comfortable covering up the baldness and scar with a wig or hats.

You could say it has been a bad year for me.

Karla Hook
Grapevine, TX

Serendipity

Quote:

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Jane...I am also taking your advice and trying to eat more fruits and veggies.....As you, I hope #3 goes better..

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Hi Gracie,
On another thread, "It's a Gas", someone wrote about their post chemo regimen for the gas/acid stomach/constipation problem. I wrote it down and will try it for Chemo #3. It was:

2 days before chemo, take 1 Senokot each night. On the day of chemo and for 3 days after, take 2 Senokot. Also take 2 tablespoons of Milk of Magnesia as needed.

Hey, I'm going to try it next time--I wasn't taking as much Senekot, so maybe I just need to take more next time and try the Milk of Magnesia.

It's worth a try, I think!
Jane

spirit

I am catching up on the posts...last week seemed to be the week from hell for me physically and emotionally and I was was entirely too tired the past few days to even come here where I really needed to be...and emotionally I REALLY needed to be here!!!! Without a doubt!!

First it was the sore throat all week and fever in between. Then my hair started falling out for real even though I'd cut it pretty short the week before starting chemo. So I drove to the salon 30 minutes away and had him clip it shorter! Then it began raining hair!!! For someone who thought she was mentally and emotionally prepared, I was weeping every other moment!

Finally, when my GP's office personnel started screwing everything up, I talked to my Onc's personal assistant who told me to come in Friday afternoon. He took charge immediately both over the throat deal and the neuropathy in my left foot which has been increasingly painful every day and nights are impossible. I don't do pain well at all...and yes I am a cry-baby!!

I hate feeling like a patient or victim which is why I fought any ill effects from the chemo. Onc. said sometimes Adriamycin can cause a sore throat but it was kind of late after mine...so it could be the lack of white cells and I really did have tonsillitis! That might have been discovered sooner had the GP's office not screwed around with my throat culture!!

What a mess last week....

Yesterday, a girlfriend insisted we go to this wig place that my hairdresser recommended. So I followed along...kicking and screaming because I'd already bought that other one. The roblem was that they didn't have natural hair, just the synthetic, contrary to what my hairdresser had said. And I am caucasion and 99.9% were these beautiful hair pieces for African Americans!! If I wasn't so upset, it would have been funny and I actually might have tried some on!! I don't mean to offend anyone...please don't take it like that...

But they did have a few. Tried this silver, short wig on and immediately loved the cut, but looked like Beaver Cleaver's mom...I started to cry and the poor little girl helping us felt soooo badly. She finally pulled a similar one that was blond...like I was all my life until a few weeks ago when I thought I was so brave(NOT).

It fit perfectly, but I HAD to get out of there because I was sooo distraught and left my girlfriend to pay for it! When she brought me home, we tried it on again here with hats and with scarves and such and it looked great. I felt so stupid....

But today again...couldn't bring myself to even go to church...even difficult sitting at my desk to type for very long. My girlfriend is taking a day off to help me rearrange my bedroom so my laptop can follow me around a bit and it doesn't feel like such an effort...

Hope everyone else has found a smile today....
love & hugs,
kate

Paula15089

well the day is finally here... 4 hours till my first chemo... take care all!
will report later
Paula

Nancy-SanDiego

Paula, can't figure out the difference in time--perhaps by now #1 is in the past and you are feeling good. My #1 is 16 hours away, but who is counting, right?

Karla, I would certainly say you have had a year. These battle scars we carry speak of victory, but that doesn't mean we want to show them to the world. There really are some great wigs out there, stylish and cool.

Kate, its hard to see the brighter side when you are in pain. Hope the throat and neuropathy are getting the attention they need and you will start feeling better every day.

Nancy K

karlahook

Nancy,

You are so right...I just needed to look at this all in a different light. Thanks for pointing that out to me. I do have a cute wig...and have tried on some cute hats as well...so now am just waiting for the hair to fall out. I'm on day 13 and nothing so far.

Karla Hook

Anonymous

Hi Grayce, Hang in there. Sorry you're not feeling well. And sorry about the hair loss - I'm trailing behind you there also - nothing yet for me. But from what you and everyone else says - it's inevitable. I really don't think others scrutinize us as much as we scrutinize ourselves. So if the wig doesn't look perfect, I doubt anyone would really notice. I have had a sore throat since last week and now I have white spots on my tonsils. Yikes! Will call Onc. tom. morn. - 1st. thing! You might be able to drive while taking the Xanax. Just pay attention to how it affects you. It may just calm you down and not make you sleepy. Again, hang in there. (Chemo #2 for me is Wednesday.)

Paula15089

Well, chemo #1 is done. Went with my mum and best friend. Felt fine throughout the infusion, still feel fine now about 2 hours later. When do the side effects kick in? Got all my anti-emetics lined up for me to take, so now its just the waiting game.
take care everyone,
Paula

ravdeb

Okay...my second chemo was supposed to be today but my wbc was low and my neurophils were low and so..... Wed. is the day, or so my doctor hopes. She had put me on only 2 neupogens and that didn't work so she told me I will do the standard 5 neupogens after this next chemo.
But, my hair... the dreaded "fall" is happening. I'm leaving shortly to have my hair shaved off and get my wig. My wig specialist is awaiting me. I kept thinking..maybe it will just thin out but this is before the second chemo and today my pillow was filled with hair, and I'm leaving trails about the house. I don't want to be a bad scene in "Gone with the Wind" during my walk outside in the wind so I guess it's "time". I'm soooooooooooooooooo scared!!!
ravdeb

sherryhaire

For me the hair thing was so much worse before it happened the anticipation will drive you nuts, when it was finally done and over with I still get sad at times but at the most part am ok and just grab a wig or hat and most of the times I wear both at the same time. Hang in there we will all get thru this

Graycie

Kate, I am sorry to hear you had a bad week....I can certainly relate with the wig thing too......Besides the fact all the wigs have too much hair for my head...I can't find any that look good on me or matches my color which just makes this worse...I have light brown hair(had)with a lot of blond hi-lighting so besides everything else I have to take on a new identity. ....The closest one I found was the free one but it is shorter than the way I wear my hair so I really look different...I guess I have no choice but to wear it since the hair is pretty much gone......
Well, you hang in there Kate, you are going to get through this we all will......Grayce

Graycie

Hi Laura, I noticed I have those white spots also on my tonsils and a mouth sore inside my lip..I called the ONC and he gave me a mouthwash to use...Not sure if they are healing but it makes them feel better.......Another side effect of the chemo...hopefully you don't have tonsilitis...
To you girls that have had mouth sores, how long do they last? Grayce

spirit

(((Grayce)))

I looked in the mirror this morning and I don't know why, but I kinda laughed a little. Maybe if I hadn't had it cut twice in the past month, that wouldn't have happened, but this morning, I just felt sooooo stupid. Last night, I walked with a handful of hair...and I mean a huge handful and showed my dad.

I told him I was gonna save it in a plastic bag for the birds in the spring for nesting!! Yeas...of course he thought I was nuts!! It was just a "wild hair" idea...and this morning that's what made me laugh!!!

Oh honey...I don't know the answers at all. I guess maybe we should buzz cut it....take some of our power back in that we are making that choice, not the illness and treatment!! I thought I'd done that when I let them cut it short and colors it differently the first time a month ago. I guess I was wrong!!

Have to go and have that doppler test today with the vascular surgeon...the sore throat and ear ache continue...and have precious little energy...but damn!!! I'm gonna drive myself there and try and get my act together....what else can we do to avoid feeling like victims?

You hang in there too...maybe 6 months or a year from now the "wig" adventure for me will become a comedy routine: Just think scenario: Everyone speaks Korean...mostly African American wigs and I wind up with one of few blonds in the place!! There has got to be some humor somewhere in all this no matter how I am feeling now!!!

love & hugs,
kate

Graycie

Well Kate, you did make me laugh....HA.....And your right I think we just have to buzz it. I look ridiulous but I just can't let go..HA........I was all set in the middle of the night when I looked in the mirror. I couldn't wait for my son to get up so I could get the clippers from him but he didn't have time to do it..I look like I have a mohawk or something the sides are really sparse...It is kind of comical......I think I will have my husband buzz it tonight...Good Luck with your Doppler test. I have to pull myself together and get out of here too. Too depressing sitting in the house all day....Hugs, Grayce

TracySeattle

Hi Ladies,
I spent 5 hours in the Emergency Room yesterday afternoon. UGH. I was running a 101.9 fever, so I followed instructions and called my Onc. he told me to go to the ER and have a white blood count done. What a mess that place was!!! I waited forever and when they finally called me, we discovered that I had an infection in my left breast. It was bright red and sore soooo, they loaded me full of antibiotics and fluids and sent me home. They wanted to keep me overnight, but then they decided that there are just too many germs in a hospital for someone on day 10 past their first treatment. I am feeling better today, but teary and emotional. I think I am figuring out that it is just going to be too hard to continue working thru all of this (they told me to take 3 days off for the infection to heal). Not working creates a whole new set of financial worries for my family.... We aren't having fun, are we? Thanks for letting me vent....

ake

tracy....i'm so sorry you had to go through that! i'm glad you're home...at least, you are somewhere you can relax and be comfortable. take care of yourself and rest.

the working thing is very stressful on top of everything else. my husband and i were not ready for me to now only be working part time and we just keep laughing about the financial situation because if we don't we'll start crying. we just keep reminding ourselves that it's temporary. chemo does end eventually. are you working full time or part time?

sending you good vibes!!!

-amy

TracySeattle

I am working full time right now. I am considering taking a leave of absence. I am afraid that it may also mean bankruptcy for us, but if it has to happen for me to get well, then I guess that is what will be. It could be a blessing in dusguise, maybe when I am better I can concentrate on finding a job where I can help other women along this journey that we are on.

daydream

Good luck, Paula! Don't worry about taking all those pills. It's not time to be brave, it's time to zap as many of those side effects before they get out of hand.

I have my second chemo tomorrow, and the last two weeks have been quite the learning experience. I had several weird, feeling strange crying spells. I finally figured out it was a fever (not too high) from the Neulasta, and Tylenol regularly took care of it.

My hair started really falling out last night. I had to work today, so I figured I would shave it right then and there. My hair is short, but it took forever! There was hair all over the bathroom. My head feels O.K., not itchy. I think the wig looks pretty decent and not too uncomfortable, but I will probably go with scarves, etc. when I'm not working. My husband and daughter are out of town. Boy, will they be surprised!

Nancy-SanDiego

Oh Tracy, so sorry to hear about your infection and hope everything is calming down and you'll be through #2 soon.

Question, when they have to delay a treatment because of infection, low blood count, etc. is there any max amount of time they can delay (weeks)? If so, do you start over or just keep up with the original plan even though it may take much longer.

Keep trying to find a wig that you feel looks great and feels great. I have been wearing wigs for several years (because of my travel scheduled) and they are out there.

I love the idea of making nestbuilding easier for the spring birds.

Two hours to first A/C and ready to kill the beast forever.

Nancy K

Serendipity

Tracy, sorry about your emergency room visit. Hope you're feeling better today.

I decided to take a leave of absence from work until I'm done with Chemo (which will be the beginning of March 2006). I work with special ed. kiddos, some of whom don't know how to wipe their own nose, some who drool, etc. and I just think I'll get sick for sure if I go back now. Of course, my own 7 year old brings home germs too, but at least I can limit some of the group germs.
Jane

sherryhaire

Jane What do you actually do with work? Special-Ed at School? I work with the mentally retarded Adults though love my job but hard at times because they too have medical problems that I have to stay away from, I am taking on more office work so I can hole up when i need to. Hope you are doing well

spirit

I'm baaaaack!!!!

And yes, it does appear that I do have some blockages. Not sure how many or if they are in both legs or what, but I am seeing the vascular surgeon tomorrow at 11 and will have to discuss surgery and my wbc which is zero!

My son is going to join me after business meeting and hear what the surgeon and the onc. have to say and have lunch. What he doesn't know is that I am gonna have a salon buzz my hair to 1/4"... I hope he can handle it...because it's something I came to the conclusion that I need to do.

I was afraid to remove my wig when I got home...that I would be bald underneath just when I decided to take control!!! But nope...I still look like a hamster with the mange! What an apy description! But at least I'm laughing.

I'm thinking of the musical: "Hair" and the one song about it....making me chuckle...

Still have the sore throat and slight ear ache, but not anywhere as bad as last week...and my GP's PA called me today as she was off when all that stuff happened on Friday. She is giving me her personal cell phone so I no longer will have to go through the front desk! That's where all the problems came from. So perhaps another wee problem solved...perhaps..

Looks as though I probably will not have any choice about the Neulesta...and my chemo will have to be put off until the blockage problems are resolved....

I wanna stay an Oct. groupie....don't kick me out????

hugs,
kate

TracySeattle

Spirit! Of course you are staying with us! Once you are an OCP, there is no going back!

RoseMarie

Kate- hugs and prayers your way! You are certainly going through a lot and my thoughts are with you!
Tracy - ditto! I'm so sorry anyone is having to go through anything else in addition to the chemo (and everything else we've been through!!!!!!!)
All three of my kids are on antibiotics and I've been terrified of their "cooties" but so far so good here.
Nancy and Paula - thinking of you both as well...I hope all goes really well for you!

I've been wearing a bandana around the house and my three year old noticed my wig on the mannequin head and was a little confused. He asked, "Is that your hair?" I told him yes then he insisted that I put it back on! I can only imagine what he's thinking!
(((hugs))) to all of you!!!!!!!