April 2013 Chemo Group

shipsgirl

Oh all of you amazing women!  I could just hug you all!!  I hear the angst you are experience over losing your hair.  I didn't think I had the courage to face it, like you have, so I am going to use cold caps during chemo on Thursday.  I just had to feel that I had some control over something in all of this. 

There's no guarantee that I'll keep it, even with the caps, but I had to try.  Actually my bigger fear was that it would grow back thinner, like my brother's did.  I want this to be a "time" in my life when I had to deal with something big, not something that I carry on my head for the rest of it.  I already have physical and emotional scars to remind me of that. 

Virginger

Denise,

Your on a road I'm about to travel. I would think having CONTROL and shaving tonight with the Love and support of you kids would be my choice. You can have the power over it...can't give you any advise on TE to be honest, not sure what that is.

Big hugs and lots of love

AllieM

Hugs to y'all!  Tomorrow is 2nd chemo - not looking forward to it at all!

Did find a cool cap today at Walmart that says "Bad hair day" on the front. Also, they had dew-rag type scarfs for $1 a piece if anyone's interested. I got a purple one with peace signs on it. Well, if you are gonna have to go through all this you might as well have fun. Ok, so it's not fun but I did get a slight giggle out of it.

Does anyone know how they decide who gets Neulasta and who doesn't?  My doc hasn't brought it up, and I'm beginning to wonder. They don't seem to do a lot of things the other MO's do. They don't offer any kind of coldcaps, no heated blankets, no counseling or nutritional help. The whole time I was doing the chemo they only time the nurses talked to me was to tell me when they were going to change my IV bag.

indenial

Denise, for me it was kind of like ripping off a bandaid. I didn't want to go through the agony (and mess!) of losing my hair, which is why I shaved it right away, I like to be in control. But I also knew the hardest part would be going in public like this, and that's the part where I just needed to get it over with. Just like anything else on this journey, the anticipation is usually worse than the reality. Buzzing it all off was a bit of a relief, it felt like the hardest part was over.

I do not like the way I look bald. Some women can totally rock it, but I look better with hair. I really miss my trademark ponytail. But on the plus side, I don't have to spend 20 minutes combing out a curly tangled mess... getting ready in the morning is way easier! And people have been surprisingly good about not commenting or acting weird or anything. It's not so bad, but I will be glad when I have hair again one day! 

That's my really long way of saying, go ahead & do it tonight... make it fun if you can, but don't feel bad if you'd rather do it quickly, or privately, like I ended up doing once my son cut off a piece for me. I did save mine to donate and that makes me feel a bit better about the whole thing. 

indenial

AllieM, mine doesn't do cold caps or heated blankets or anything like that either. Seems like they do a lot of things differently actually. I am not getting Neulasta, it wasn't even mentioned. Turns out my MO wants to see if my counts recover on their own, plus there is something in the shot that I may be allergic (latex). I am a bit worried about getting sick but we'll see... I have bloodwork every few days next week. I think if you've already made it to round 2 then your WBC's must have stayed up on their own, or at least they didn't cause any issues when they dropped! But I think it can get worse each round. (Just from what I hear... I don't really know what I'm talking about...)

Gardengirl33

I'm getting ANXIOUS! been so depressed all weekend! I don't want chemo! Waaaaa....

Just like my mastectomy, I guess I will feel better when it's over and behind me.

Just chemo! There's so many things to think about and remember! Take this pill, take two of these pills, will I be able to go to work? How tired will I be? Neulasta scares me! I don't want to be achey. I don't want any of this thank you very much!

Ok, now that I am done venting! Thank you ladies.

I am scared! I want to cry..... Just when things started feeling normal again, right?

Dede, gosh buzzing the hair? As hard as it may be, I think if you include your boys in on it you will feel better. Also I think they will see mom! Strong and tough! Kids understand a lot more than what we give them credit for. Beherenow, cool deal on cap room LIDS. Very nice to have a niece supportive of you.

I have all kinds of friends and family asking how I am doing. I say good, I say no I don't need anything. Odd,but not oddly enough (i am usually a loner) I just want to be left alone right now? Anyone else feel like this? One I hate asking for help! Two, I don't want anyone feeling sorry for me right now. I want to be treated like regular old me.

Virginger

Any one else doing a Clinical Trial?

I do get the heated blankets, snacks, great nurses, and have a CCRC (Cancer Center Research Counselor) plus a breast cancer navigator. I'm part of the Assigned Interventions group. Here' the link for what the trial is all about if anyone is interested or wants to share their opion about it...

http://www.clinicaltrials.gov/ct2/show/study/NCT01547741?term=NSABP+B-49&rank=1

Had my first treatment Friday....not really any SE yet...have a follow up with my surgeon Wed from my port install, but not scheduled to see anyone till May 23, work ups for my 2nd treatment on the 24. Is that normal?

indenial

Gardengirl, yes, I find myself just want to be left alone too. I am trying to force myself to respond to at least a few of the phone messages and emails because I know my friends are worried but I just want everyone to leave me alone & stop feeling sorry for me & I don't want to need help!! And I get the chemo anxiety, I keep saying in my head, "But I don't want chemo. I don't want to have cancer," as if simply wanting would make it go away. It looks like you're on the same chemo as me, I'm just 6 days ahead. So far it has been WAY easier than I expected. I'm waiting for the other shoe to drop but it seems many say days 3-5 are the worst and I'm on day 5 and so far I haven't felt any worse than I do on a normal bad day (I've had a chronic illness for years) and the mental stuff is the worst, the anxiety and a bit of brain fog but mostly the anticipation of what will happen next. You can do this... you really can. I swear, if I can do it, anyone can, because I am such a wimp!!!

Virginger - I had chemo the 10th, supposed to go for bloodwork a few times (no Neulasta) but no actual appointment until my pre-chemo appt a few days before my next infusion.

BeHereNow

Hi Denise, I was going to wait, but then went ahead. Your family will be able to be with you in the moment if you're not in the middle of a busy week. I am finding that I'm sad, but now that I've cut my hair super short, I'm experimenting with my hats and slowly getting more comfortable.



This is very hard and I'm sorry you are going through it. For tonight, I vote YES. I'll be thinking of you. You will find a way.

OnaWing

Hello ladies. You women are amazing. I'm inspired by how you are adapting to things as they come, many displaying both strength and grace. Some attacking with a sense of humor. I've been following the hair thread (we should call this one a strand) knowing I'm a few weeks behind. The single thing I am unable to handle to this point is the loss of my hair. I cry every time I think of it, the tears are streaming down my face now. It's not vanity, it's that it all becomes so real when the hair goes. After that, there is no denying, no pretending and no hiding the fact that I'm a cancer patient. I will be reminded of it every minute of every day and I will have to face the sad and concerned look on the faces of those people I love most in the world. I'm hoping my fear is worse than my reality. I know this is just one more step in the process of being well and healthy again.

My sister is coming up for a head shaving party, having her's shaved too. She's crazy, but she insists it's just hair and she's doing it. Looks like I can't stop her so I'm buying her a beautiful scarf. We've been together for every good, and bad, thing that's happened through our entire life so it's fitting that she be on hand for the balding of a cancer survivor. Before it all comes off, I'm having a picture taken with my hair in a mohawk to send to my two precious grandsons. My way of introducing the new Ya and letting them see that everything is okay.

Chemo starts tomorrow morning and I'm so ready to get going. Afraid but determined to graduate at the top of my class.   

snrise

BeHereNow...I am new to this website, my chemo starts on the 25th April, and so very nervous about the whole S/E...I have 2 small kids too, hoping it will go well...I keep saying that its only 6 months...not my whole life...

Virginger

I was really scared too...but Finally after I told my 81 year old widowed father in Alabama...'came out' on Face Book....Oh My Word...the outpouring of Love and Support I've gotten from High School friends flyin in to be with me, a friend is making  a glamorous turban,College theater buddies forming a "Healing Circle for a Friend', folks I've worked with who are now all across the country reaching out....It is scary and I Don't Wanna lose my hair...I don't wanna have Cancer...but just sitting in my home, alone, not letting folks who love me reach out and at least offer words of love, encourgement, and just making me bust a gut laughing at old times has REALLY helped me....if any of you are on Face Book and want to add me, I'm Virginia Ginger Stern....this board IS wonderful, and I guess I'm on the computer too much, but living alone, it's been a great comfort...

Thank you ladies for being brave and accepting and helping me walk my journey!

kobrien

About the hair subject-- I am right there with you all. The thought of losing it creates such anxiety in me. I am not a vain person, but my favorite feature about myself (physically) has always been my hair. 3 weeks after surgery, my sister took me for a haircut and I went from it being in the middle of my back to chin length. I had been growing it out for 10 years! Its definately more than "just hair"- its a complete sense of being. My shorter hair is now starting to grow on me, but bald?! Don't think I could ever get used to that. I have never been a hat person- except the occasional baseball hat with a pony tail when I was too lazy to do my hair. So I don't know what I am giong to do when its all gone..The mental anguish this breast cancer has caused me has been unbelievable.I have always been a "strong" person. Now Im a needy, insecure, anxious mess...and I completely HATE it...I am a bit of a control freak..I am an ER nurse--so used to being the one to take charge and now I feel completely helpless to this beast that has over taken my life.

I have an amazing new husband, wonderful co-workers,friends and family. But I am not prepared for what this chemo is going to do to me physically and emotionally. I am all sorts of angry and scared.. This is just total bullshit! So just not right for this to happen to anyone!

Im sitting here alone- husband out playing softball( which he really needs to do!) kids are doing their own thing and I just felt the need to vent...Thanks to you all for listening.

Jen987

Vent away. That's what we're all here for. We get it. Stay strong, we will get through this.

shipsgirl

Hugs and support to you all.  You can do this.  You know you can.

Virginger

Hugs, Open Ears...or Eyes. and a Virtual sholder to cry on....so glad we have a Place to VENT~

Deb3kids

Oh man...I think it started:( I was taking a hot shower when I noticed it. The hair at the base of my head started coming out in my hands in small clumps. Today is 12 days after my first treatment. No warning signs...just a twitch or tingle here and there, but I chalked those up to just being "in my head." Before my shower my hair was fine. I know because at dinner I was just telling my husband that my hair was hanging on tight still and I showed him by tugging on some of it! Must have been that hot shower! Now my scalp is definitely feeling weird. I will make a game plan for my hair tomorrow while the
kids are at school. I refuse to get emotional about it tonight...

OnaWing

Deb3kids, I love your resolve.... "I refuse to get emotional about it tonight..." Now, that's taking control. This (not so in control of BC) control freak is going to try it. Beginning now, I will decide when I get emotional. At all other times, I will refuse to get emotional.

BeHereNow

Snrise-welcome! I'm sorry you have cancer. I hope you will take advantage of all the support and info here. I have found it to be amazingly helpful



Kobrien-thanks for trusting us with your vent. This *is* horrible! I find I feel much better overall if I allow myself to vent or cry or whatever I need to do.



Sweet dreams, all!

ldesim

This is what is getting me through hair loss 1) a great wig that I bought the first day of chemo, 2) a nice soft jersey knit sleep cap that I got from headcovers.com (has elastic on back so it doesn't come off head at night.); and 3) newsboy type hat that I wear over a crochet skull cap around the house (skull cap covers more of neck and side of head, helps keep newscap cap on and provides warmth, while newsboy caps brim makes me feel less naked and in my opinion less like a cancer patient. I didn't like the look of just skull caps or turbans or scarves... to me I just felt that I looked like the sickly cancer patient that I was.

I fought until the bitter end as I couldn't bear to lose my hair even one day sooner than necessary.  It started tingling/itching on a Monday, continued to Tuesday, starting coming out in clumps in the shower on Wednesday, same on Thursday.. 2nd chemo, hair in pony tail through Friday.. Sat morning shower and the tub and shower are covered in hair, had a good cry, cleaned up the mess (what a major pain), asked hubby for the clippers and shaved my head and cried some more.  Wore wig around the house Sunday to get used to it... wore it to work on Monday and cried every time a cowoer complimented my hair lol.

6 months later and my hair is starting to grow back and I'm still not over losing my hair!

If I had it to do again,

KimHam

I've been lurking through these forums since my shocking diagnosis at Christmas.  It is time I give a BIG shout out and huge "THANKS" to all you wonderful "Sisters" that have been a GREAT source of support to me - even though you didn't know it. 

Although I knew I was going to have to have chemo - eventually,  due to a "spot" on my CAT scan the chemo doc brought up in our 1st visit, I went through 10 terrifying days of fear that my Stage 2A breast cancer was going to change to Stage 4! I found out just this past Friday afternoon (12APR) that the spot was NOT cancer and I will be at the "Chemo Bar" with my 1st "cocktail" this Tuesday-16APR!  (Loved that reference someone posted earlier.) 

I know not what kind, how many treatments, how long they will be . . . Nuthin' at this point! 

I am also one of the many completely terrified of this next step!  In fact, through hysterical tears,  I begged my surgeon to glue my boobs back on and cut them off again instead of having to go through chemo.  She hugged me and promptly gave me crazy pills.  (Husband wants me to call them happy pills, but I'm really not happy I wasn't mentally strong enough to beat back the terror by myself - hence I call them crazy pills!)  Have to admit, they work!!  My rational side, although still scared, is now stronger than the hysterical side.

This is where my THANKS comes in!  Although I will find out for sure what's going on Tuesday, I feel pretty well informed - well, enough to ask informed questions on Tuesday.

How my Tuesday will play out:

- Early morning "fill" in the TE's (PS told me best time for fills are right before treatments to avoid infection possibilities)

- To infusion clinic for port to be accessed (Thanks for letting me know to ask for the numbing cream in advance!)

- Blood work (Yay port!  No more sticks!)

- Meet with oncology doctor to find out what I'm getting, etc

    (Depending how long the wait is - a quick run to the hospital wig shop to see about their complimentary wig program)

- Infusion begins!

   Will request the ice mitts or bowls for fingers and toes.  

   (Husband has threatened to handcuff us together to make sure I don't go running, screaming from the room before they can get me hooked up!)

So it looks like I am also going to be one of this wonderful team of April sisters! 

Scared.  Hopeful.  NOT wanting to lose my hair!  Doing my darned-est to be a brave fighter!

Again, thanks for sharing your journey here.  Whether you are informing, venting, or simply killing time with your "cocktail," I'm so glad you are there.   I only hope I can return the favor for someone else someday.

dede707

Hi all. 

Thank you for the responses. As it turned out, I am going to wait to buzz/shave. When I told my kids, my 11 year old daughter freaked out. She really doesn't want to be part of watching it go. She says there is nothing fun about it and doesn't want to make it a "fun" buzz party. We had a good cry together. I told her it was coming out whether we liked it or not, but we would take it as slow as we could. So I am going to let it go for a day or so. The first clump and then I will buzz! My little guy (5) said he would have fun and cut it with me. So, here I am freaking out and I realized my whole family including my hubby- we are all having a hard time about it. I wanted to take care of it today, but I need to take in my family's request. This is the last hump- then there are not unanswered questions- just finish chemo and then... Can't wait, I didn't realize the stress we are all under. 

I was able to get my hands in some dirt today and do some Spring Garden Clean up. That felt great to lose myself for an hour. 

I, too, want to be left alone. I am really angry right now. I am so mad at this cancer! This is such bullshit. I wonder if I am just burnt out or is it hormones, meds, adjustment to thinking of a whole new lifestyle during treatment and after. 

I do thank you all ladies for being there and being so honest and so raw. I try to explain the connection I have with my "board" with my hubby or friends, and they have no idea how much this means to me. So thank you. I am humbled my your support and freindship. 

For me, I didn't hear that the cold caps could be a possiblility until I had already cut my hair and was a week away from Chemo #1. Where I live, it had to be ordered from England. I would have to pay out of pocket (1800 at least). My infusion place didn't have the freezer so I would have to bring my own cooler with dry ice and someone with me to change them every 30 minutes. The studies show they are safe but since you are freezing your scalp the chemo doesn't get there. Is there a chance of reoccurence? So the timing was right for me. In my panic right now, I wish I did it. Didn't have the cash tho'  and trying to convince myself that going bald is the warrior way... whah, whah, whah. I think we are right at the verge that it will be offered to all and insurance will cover it. 

Gearing up for Herceptin IV tomorrow and my first Tissue Expander fill. Hoping the fill goes well and I won't be in pain. 

Quite the ramble. I wish you all a great week, no side effects, and sunshine for your soul. 

Denise

shipsgirl

Dede, bless you and your family.  I feel your anxiety and your anger and your outrage and your fear...  I get it.  That's the beauty of this board; we all get it and share it. 

I'm doing the caps but my protocol is ACT which is has the lowest success rate.  But I just had to try.  If I keep enough for a covering, I'll be grateful and feel like I'm helping to spread the word and educate people.  I'm only the second person to do it at my centre and the other is on infusion 3, same protocol, and still has her hair.  So I feel I'll be teaching the nurses, as I learn myself and hopefully making a difference for future patients.

You made the right decision for you and your family.  You will all get through this and soon be on the other side of it.  Hugs to you all.

Deyla7641

You ladies are all amazing! I did my first chemo-ACT back in July when I was first diagnosed and my hair started coming out in large clumps after the second dose of AC. My husband and I shaved our heads and my then 2 now 3 year old son watched so he could see I was still the same mommy. My hair is just starting to fill in nicely and I just started another round of chemo-Ixempra due to a small lesion on my spine so it looks like all my hair will fall back out. At least I know it will come back eventually. For now i'll be rockin my bandanas again for summer time. Wishing everyone minimal side effects! Hugs,



Deyla

BeHereNow

Good morning, all! I am hoping we all have weeks more peaceful than we can imagine.



I am adjusting to losing my hair. Less sad today. I am wearing a hat given to me by a friend: Turtle Fur. It's made in Vermont. Very thick and soft. Great when there is a old breeze! I am still loving my hats from the Lids store.



I've still got lingering sinus issues, even after zpack. Grrrrrrr..... Now I'm trying home remedies. Never thought I'd put coconut oil up my nose! Lol. But I want to stay on track with my chemo. I am speaking to a really large group on May 4th and have my treatments timed just so...



This is my "good" week, I'm told (chemo #2 next Monday). So I plan to have some FUN!



Love and hugs. What a roller coaster!

Deb3kids

Hi all! I'm sitting in the waiting room waiting to be called for round 2. I can't believe how busy it is! I thought "the season" in Florida was tapering off until I showed up here this morning. The nurse mentioned that many patients are getting their last infusions then heading to their homes in the north. I can't blame them as it has been so hot and muggy lately! I plan to check out the Lids store on the way home. Sounds like many of you have had luck there. I have never been into wearing hats. There has never been a need to keep my head warm this far south. So, I really feel silly wearing anything on my head other than a sun visor at the beach! I know I won't go out bald...I can't pull that off. I will have to adjust to something... I still have my hair. If I leave it alone and stop running my hands through it, I think it may last a few more days. Well...it's my turn now...

Virginger

((hugs)) Deb3kids let us know what hats ya get.

Welll Day 3 and I'm starting to feel the fatigue...moving and thinking a little slower...did make it to the store for some egg beaters, beets, individual Ben and Jerry's...guilty pleasure ..blue berry and black berries.....the egg beaters aren't too bad..cut up some fresh aspargush i had in the fridge and pretty easy lunch.....well gonna TRY and make work today...at least 1/2 day... afraid tomorrow might be every MORE drained....

Hope everyone has a great day.....rainy and cloudy here.....ugh

indenial

Question: how long did you all continue the nausea meds? I took none for the first 4 days (had no nausea and the Aloxi I got at infusion was supposed to stay in my system 3-4 days anyway) but since then have found myself needing to take something. I'm worried about taking it too often/too long. The nausea isn't intolerable but my appetite has gotten worse and I can no longer tolerate the glutamine I was taking and I'm drinking less water because it irritates me. I also have stomach pains for a few hours after eating. Worried that the nausea meds are going to make things worse (more stomach pains, constipation, etc.) I'm on day 6 today.  

heather214

YEAH VIRGINGER, made it through - that is awesome! You are all so lucky to have had someone with you. My infusion room only has 5 chairs, and no family/friends have room to come in, I hate it!

heather214

In denial, I am dealing with the same. One day is OK, the next I am running a low grade fever, cannot focus, exhausted - I feel just BAD. Honestly I can say I have had one true "good" day since the chemo almost 2 weeks ago. Mine is every 2 weeks, so my guess is by the time I even start to recover, I will be slammed again by the chemo fog. AGGHHH!