About to start my Chemo Dec 4-final step of beating the beast

Robyn66

Hello my dear sisters,



Oct 27th had the mastectomy with a tissue expander "installed" LOL the sentinel node having a tiny bit of cancer in it. The other nodes were clear. The margins were clear the bone scan and ct scans were clear and the original diagnosis of HER2+ turned out to be wrong.



So basically it seems things are going my way Thank GOD!!!



I am going to Dana Farber in Boston. I have picked out my wig and it will look EXACTLY like my hair now. In fact people who don't know about the whole bc thing will just think I just had a hair cut!



My oncologist is extremely positive so I should be just walking on air right now! WRONG!



I am really freaking out about losing my hair. More than just about any other part of this thing. I know the wig will be fine but I know i will have to wear caps and probably (gag) scarves. Some people look wonderful in them but to me they accentuate the idea you have or had cancer and they look like you came out of a concentration camp. Please please please I don't want to offend anyone. I hate the turbans too. In fact I hate anything that will accentuate the fact that I will be bald.



I think I have looked at every website that shows head coverings and nothing has struck me as something I want to "live in" when I get home and take off my wig. Have any of you felt this way? I mean this is really horrifying me more than thinking about the chemo making me feel crappy or tired. I hate that I am so vain but I honestly don't know how I am going to function without crying hysterically every day. And I really don't have any right to because I am doing so well and am soooo lucky!!! What the hell right to I have to be whining about just losing my hair!!!

KPolasek

You have every right to be pissed off about the loss of your hair.  Some people do not lose their hair or partially lose it.  Mine thinned out .... a lot .... but I was never completely bald.  My lumpectomy was 11/1/07, Chemo started 12/26/07 (Merry Christmas), my hair started falling out around the end of my first chemo - so I had my hair stylist shave it down (I had very thick hair ... and like you, I loved my hair).  My chemo ended 2/26/08 and then my 33 treatments of radiation ended 5/9/08.  My hair has grown back and I have had it cut twice and highlighted.  It came back very curly and a different color than my original.  I avoided looking in the mirror as much as possible.  I wore a wig some but the wind always seemed to try to blow it off so then I went to caps.  Hats made me look chubbier.  Target carries a lot of good caps for women ..... don't spend a lot on any of this stuff because time will fly by .... I promise.  Fighting cancer is no fun.  For me, it seems like a dream .... others told me it would.  Unfortunately for me my breast still hurts and has scarred quite a bit.  So, I have gone to a new breast surgeon to see what she thinks .... since I have huge boobs .... maybe doing a mastectomy or partial might be a good thing. 

I will pray for you during your treatment phase ..... face it one day at a time.

Blessings,
Kay

lisasayers

I start my chemo on December 5....had my bilateral on October 24th with expanders.  My hair will be falling out soon after the first treatment...but it will grow back.  My 18 year old daughter has alopecia and is bald.  I will now know what it is like to walk in her shoes.  It has been difficult for her...she worried about dating, going to college, etc.  But she has handled it with grace. 

I don't think she looks like she came out of a concentration camp.  She is beautiful with or without hair.  People don't treat her like she has cancer.  We now live in a world where people, both men and women shave their heads, have piercings all over their body, and choose to color their hair any color of the rainbow.  My daughter goes out in her wigs or just scarves or just hats. 

She has taught me so much in the year since she lost all of her hair....a lesson I'm glad I learned before I was diagnosed. 

I guess it is all perspective.....there are worse things that could happen.  Do I like it no, but it is what it is.  Maybe my daughter and I will have a photo take together...bald is beautiful! LOL

Best of luck on your journey.

Alicia70598

Hi Robyn,

We had a similar dx and surgery.  When I'm not wearing my glorious wig at work, I love this scarf liner with Add-a-Bangs from TLC Direct, the American Cancer Society's retail site. I don't know what I would do without it. The scarf liner is comfortable and adds volume, and the bangs look real and make you look less 'bare.' as opposed to wearing a scarf or hat without bangs. 

And for what it's worth, head scarves are in style! 

Good luck  with your treatments. Mine haven't been nearly as bad as I imagined, and I'm a month away from finishing. 

Robyn66

Thanks guys,



I am hoping chemo isn't as bad as I am fearing because I need to keep working. Alicia I will check out the ACS



I am very grateful for the fact I am doing so well and I have so much respect for women who are facing this baldness thing with so much more strength and grace than I am. I am hoping that I will be able to accept this and not be so horrified as I feel right now.



From what I was told I should be losing my hair right around Christmas too.



But I have gotten through all of the tests and biopsies and scans as well as the surgery so the baldness shouldn't be so bad. Hopefully I will feel better about it soon.

Onehalf

My hair is gone! My first treatment was Nov 5th (Taxotere and Cytoxan) By the second treatment it was gone...I did not like my original hair...it was thin and flat, infact I would get perms to give me body...but it was my hair and I did not want to lose it. I felt the same as you....that was my stress.

I work with young children and my focus was to hide it the best I could from them. Finally after my first treatment went so well...my focus on my hair and the children became stronger....so the week I was beginning to lose my hair I sat down wtih the children (Preschool/Kindergarteners) and talked about sickness and losing hair...I did not give them the name of my sickness or tell them that medicine was making my hair come out...could you see a parent trying to give them cough syrup...the child might think the medicine would make their hair fall out, LOL!

I did explain to the children that every part of our body has a job....and hair was to keep our body warm, so since my body had to lose my hair to heal. I would need to wear hats/scarves and wigs to school. (Which I never have done ) they laughed when I said wigs...one child asked if I would wear a blue wig.

Since this day...I have been more relaxed....and I am beginning to have fun with my new look.

I do have a very nice looking beautiful wig...that I won't wear to work....too long of a day...I did buy a hair piece that I can velcro in hats...and I just ordered from TLC. (www,tlcdirect.com) some hair halo's. I think those will be the best for my line of work....and not too hot. Since the kids now know. I bought curly and straight halos....My plan is to now have some fun. I am in the process of looking at some scarves.

I am going to the American Cancer Society free class "Look Good, Feel Better" I am doing this as I have never wore makeup and if the eyebrows thin or come out then I need to know what to do. Plus in the class they show you how to wear wigs (and offer free ones) and how to wear hats and scarves...I'm kind of excited about this class. I have never gotten into my looks.....I am a wash and wear girl.....I never glanced in the mirror when I walked by...but now I do as I am getting used to my new.

Don't stress too much....just like the other stages you just need to go one day at a time and go with the flow...

My personal saying is "healing begins with the mind"

Best of luck.

Denise

Sunshine99

It's funny, but I kind of looked at losing my hair as a "badge of honor".  I wore my wig only to church and to a business event with my husband.  Otherwise, I wore hats and caps. 

People knew (or guessed) what I was going through.  I saw a woman at the gym - she was completely bald and completely beautiful!

Being bald (or having very thin hair) also reminds people that you are going through a tough time and if you aren't up to your usual level of activity, they're more likely to cut you some slack.

Your decision is a personal one - don't get "guilted" into doing what someone else tells you to do.

I don't know where you live, but you will almost certainly want to get a sleep cap for night time.  Our house gets cold and I needed that to keep my head warm.  I also decided, after reading the experiences of the ladies here, to have my hair buzz-cut on about day 14 after my first chemo.  I had taxotere and cytoxin, so it was pretty predictable.

Westie

I just go around bald at home with a cap handy for answering the door.

Robyn66

I'm sorry I can't find anything empowering about this whole thing.  But I have a ton of respect for those who do.  They have far more strength than I do.  I think it may be because my entire life has been about hair.  I can tell you every haircut I have had in my life.

The first major haircut I had was in third grade which was a pixie cut

then I graduated to a Dorithy Hammel

In high school it was first a Lady Diana

Then perms- I was a total big hair 80's chick

I was in theatre in college and not only acted but did hair and make up back stage.

I was known for being able to give my characters and others several different hairstyles during performances which is pretty tough to do.

When I got married I did my hair myself because I only liked how I would do it-hot rollers and all

It was only when I had kids that my hair became less of a big deal  I cut it off which it seemed most of us did when we had our first kid-which incidently was when my mother had lung cancer and was going through chemo and lost all her hair which was EXREMELY tough to go through a pregnancy and take care of a sick parent at the same time because no one else in the family could deal.

I took a back seat through the break down I had and was diagnosed bi-polar two years after my second child and five years of therapy that finaly gave me my self esteem and made me understand and get past years of emotional abuse as a child that I endured which included an alcoholic father who used to kick my door in and shoot blanks at me when I was 16 thinking it was funny but I was never sure if it was going to be real bullets at some point.  And a mother who made me earn her love but I was never quite good enough.  Oh and by the way when she was dying she told me it was my fault because I didn't get her to Dana Farber soon enough.

So this is more than about hair and looking pretty.  This is like having my guts torn out or an arm torn off. 

This is probably more info than anyone wants to know about me but maybe it sheds a little light on why it matters so much to me.

So I will get the stupid caps and live with the nightmare because I don't want to die.  But all I can do is pray that it won't hit me as hard as I fear it will.

Love to all

Robyn

Sunshine99

Oh Robyn,

I'm so sorry.  I hope my response didn't sound like I was making light of your situation.  I'm glad you shared. 

Sending you love, hugs and prayers!

Robyn66

Oh no Sunshine it didn't sound like you were making light of my situation.   I am just frustrated that I can't seem to get to that attitude.  I am a perfectionist by nature (along with my other HOST of issues ) so, I want to be in that perfect serene place that some of these ladies seem to manage to be in NOW.

Like today, I am listening to this cd at least once a day Peggy Huddleston's Relaxation/Healing and the whole emphasis is on how much your mind can influence side effects and recovery time.  Normally, I wouldn't try something like that but both of my surgeons at Brigham and Women's reccomended it and there were studies at Harvard Medical School that indicate it helped healing etc.  So I guess I am putting MORE pressure on myself because I am spending most of my time trying to make my fear go away and banish any negative thought which I am sure you know is INSANELY difficult!

Anyway, thank  you for your input, I am glad to have it, it gives me hope that I will eventually "get there"

Robyn 

jdash

Robyn  i totally understand  i had really long blonde hair and i never realized how much a part of me my hair was - it was a really really hard part of the journey - i know it sounds vain when one is going thru cancer but it is a fact and most women feel this too    i had a wig made which looked just like my hair and then after the 2nd treatment  I had the wig place shave my hair off with my 20 yr old daughter with me-i was so proud of her that she came with me as i can only imagine how hard it was for her (especially since she lost her dad to cancer when she was only 2 )  i wore the wigs out always  never went out without them -  i worked all thru chemo-  i was featured on a segment of Good Morning America about working thru treatment  At home I never wore my wigs - I wore a bandana tied on my head becasue it was so comfortable and had a few scarfs i bought as well-  and then when my younger daughter got used to it I took the scarves off at home and just went with nothing-  after a while you get used to it somewhat and just want to be comfy

good news is that it grows back  and here i am 2 yrs later to attest to that

best of luck   lots of love from another sista

julia

Robyn66

Thank  you, I can't wait to get past tomorrow. (first chemo)  It can't be as bad as I fear, and then I can start counting down.  I was just thinking this morning that I was never going to leave the house except for work until I am presentable again-no more social gatherings or anything. 

I hate seeing my friends who I have known since college (oops belongs on the other thread) because they instantly straighten up and act wierd now.  I don't want to go out because I know people will look at me and think "Oh how sad she must have cancer"  how do I know this?  because I used to think that when I saw someone obviously in a wig.  Maybe mine won't be obvious I don't know.  At least at this point I can't imagine functioning as before at all!

everyminute

Hi Robyn -

I just finished my last chemo 2 weeks ago.  I wore a wig the entire time.  At home I wore a scarf and cap but only with hubby and kids - if someone came to the door at 3am I would get the wig! (not that that happened but it was always near by just in case).  I am just now losing eyebrows and eyelashes but have gotten VERY good at painting them on. 

So picture this - keep in mind I have had 8 chemo treatments  - I went for my preop testing yesterday at the hospital for my breast exchange surgery (I had a bilateral in July).  The nurse went on for about 5 mins talking about how to prep for surgery and how important it was not to wash my hair the day of surgery or to use any hair products like hairspray, gel, etc, etc, etc.  She obviously did not realize I have no hair or even eyebrows(I have a few but HAVE to use a pencil to color in) and eyelashes .

As far as friends - I have found the best thing I can do is put on a big-a$$ smile and show them that I am ok.  None of my friends feel sorry for me - they all tell me how strong I am. 

I didnt think I could do it and now I am done (with that part).  You will do fine and be amazed. 

PM me if you like and I will send you a pic of me in my wig and smile :-)

Alicia70598

Hi Robyn. How did your first chemo go?

everyminute

Robyn - Thinking of you!  Hope all went well (as can be expected for such things)

jdash

i thought i wouldnt go out to social gatherings but surprisingly enough i started to go just to show people that i still was okay -  i kind of got this strange pleasure in letting people see i was doing fine - and it made me feel better not isolating myself so much   take it slow and see how you feel everyday -  chemo is doable   certainly no fun at all  but not as scary when you start going thru it

hope everything went okay for you

julia

Lisa1964

Robyn, you do not need to be a hero about loosing your hair, it sucks.

I hate my wig.  I wore it once and I will wear it one more time becuase I have to go to a funeral later this week.  There will be hundres of people there that I have not seen in years and I don't want to have to answer any cancer questions.  Other than that, I just wear baseball caps.  I went and spent a fortune on scarves before I started chemo, and that was a waste of money.

Hope your first treatment went well.  I just had my 3rd yesterday. This stuff will pass.

Lisa

Robyn66

Thanks Lisa,

I still feel like crap 5 days later!  What is up with that???  I thought the first one was supposed to be the one I got over quickly?  PLUS after being diagnosed with premature ovarian failure this summer, (my summer was TRUELY FULL OF JOY!) I now have my first period in TWO YEARS!

So much for feeling all empowered and crap!

Lisa1964

Robyn, sorry to tell you, but you will not feel pleasant for about 10 days.  You start to feel normal again ust in time for another treatment.  Sorry, that is just the way it is.

Lisa

Mocity

HI there,

Sorry you are goign through all this too.  I started chemo Nov 7th.  I am having it weekly for 12 weeks.  Tomorrow is my 6th.  I start losing my hair 2-3 weeks ago and hada my hairdresser shave it off.  Yes it was terrible and yes it was stressful.  But hey, it is done.  I am getting used to my wig.  It is hard and we have every right to be upset about it.  I try to tell myself this is temporary and it will grow back.  We will get through it. 

I too have been tryhing to find something other than the wig I feel comfortable in.  I have a sleep cap I like but I took so OLD.  I am 37 and feel like I look like I am 100 years old.

Good luck to you!  Get on here and vent.  We will all get through it and be stronger because of it!

Take care, Cristl

Alicia70598

Robyn, I'm so sorry to hear that you're not feeling well. For what it's worth, A/C was rougher for me than the Taxol that followed. I hear that's often the case. So if you can make it through the next three treatments, you may feel some relief. For me, the difference was significant -- no fatigue or queasiness -- and my hair started growing back! Really, I've felt pretty darned normal on Taxol. But you're probably tired of hearing my positive experience!  I know everyone's different. Also, I'm getting the Taxol once a week for 12 weeks, which can be a little easier. On the other hand, I'm also taking Avastin along with it, which can make things more difficult. 

I hope things improve for you soon! On another positive note, I wish I had your diagnosis!  

Mocity

Hi Robyn,

I saw this thread and was just wondering how you are doing.  I am doing 12 weekly Taxol+Herceptin treatments and then Herceptin for a year.  Tomorrow is my 10th treatment.  It went fairly smoothly (i know that now!) until about the 6th. Since then I have been so fatigued and generally feel horrible. My nails are really painful and my big toes are black and nails coming off.  I see my Onc tomorrow because they are worried about the neuropathy in my hands and feet.  I can't Wait till this is over.  I hung in there pretty good and tried to keep up my regular social gatherings until about 2 weeks ago.  Now, between, no boobs, no hair, bad skin and nails... I really just want to hide.

How are you doing???  I wear a wig all the time but at home by myself when I go to bed.  I haven't found anything that I think looks half way cute or that I feel comfortable in.  I have sleep caps I sleep in at night.

I had my b-lateral 9/08 and cant wait to have these expanders out!

I hope you are doing ok.  Good luck to you, Cristl

Robyn66

Hi Cristl,

I have had three A/C and feel like crap still 10 days after the last one.  I am due for my last AC on the 15th so I am terrified about how got aweful sick I am going to be.  No nausea, they gave me stuff for that but the exhaustion is unblelivable!  I am PRAYING that I am as lucky as others here who have said the third AC is the worst and this one may not be quite as bad.  I hope the Taxol goes as well for me too.  Right now I am actaully feeling pretty low because I am tired and bald and the expander digs into my side at night.  I can't wait for all of this to be OVER.

I have a great wig and look pretty presentable when I go out.  I wear a scarf and velcro bangs in the house or a cap in bed.  I am not one of those women who look good bald AT ALL!!!!

So thanks for asking honeym, wish I was up for saying I am awesome.  I am just struggeling through the best I can.

Take care!!!

Robyn