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Feeling Insecure and Broken

M26
Posts: 3
Joined: Jan 2013

Hi, I'm a 26-year-old female who was recently diagnosed with HD Stage 2A last October.  I have currently completed 4 of 12 ABVD chemo treatments but this last week have experienced a significant amount of hair loss.  When first diagnosed, I cut off a few inches of my hair in anticipation of treatment, but now I'm really thinning and balding and to be completely candid, I just feel horrible about myself.  Physically, I count my blessings that I have been feeling alright however, mentally and emotionally I feel kinda depressed and like my spirit is broken because I am waking up and not recognizing myself in the mirror.  I don't like what I see at all.  And while I have already had a wig made, I can't bring myself to wear it.  It's an awesome wig, but it's not me. It's not MY hair.  

I'm really hoping I don't lose all of my hair but either way, how long does it take for hair to start growing back after chemo ends?  More importantly, how long does it take until it's grown in and not balding?  I need something to look forward too....

Stay Strong.

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Hi M26 and welcome here.   You will find caring and supportive folks here and they will be chiming in soon.  I just happened to be on at the moment so you got me :).  Well for starters, "M 26" is an assault weapon so I think it's a fitting name for you to kick cancer's butt ;).  Regarding your hair, you will probably lose all of it but it will grow back.  Mine was growing back in about 6 weeks after I finished treatment.  I think it was pretty full after about 3 months.  Interestingly, the hair on my head came back darker - it's almost black now and with less gray than before.  I think it took about the same time for my eyebrows and eyelashes to come back as well.  I was on R-EPOCH chemo (6 cycles).  This is probably different for everyone but if I recall correctly that's about the timeline for me.

With my family's help, we tried to make my hair loss silly and fun.  I wore silly hats, "dew rags", etc. and paraded them around at the hospital dragging the IV pole with me.  I wore knitted caps when I was cold and slept in them because of heat loss through my big "Mr. Potato" head :).

What you are experiencing is normal and try to work through and with it.  You are not alone here and others will respond soon.  This is not an easy experience but you will get through it.  We are here for you so feel free to come here anytime to vent, share, ask questions, offer support for others when you're ready, etc.

Hugs - Jim  hugs, animated heart

M26
Posts: 3
Joined: Jan 2013

Hi Jim,

Thank you so much for your prompt response!  And I'm glad you like M26 haha!

I have been struggling emotionally these last few weeks but I have been reluctant to join a support group because, well to be honest, I'm not sure how I feel about openly discussing my fears and anxieties about cancer.  Truth-be-told I think I am still in denial that I am fighting cancer. Perhaps that is why I am taking the loss of my hair particularly hard.  It's the first "real" sign that makes me look sick....

Normally, I'm a fiercely private person.  Even though I was diagnosed back in October, only a few of my very close friends and family know what I am battling.  I guess I don't want cancer to define me.  I feel like if I can just close my eyes, fast forward to May when (fingers crossed) my 12th and last chemo treatment is scheduled to take place, I can just go on with my life acting like this never happened.  I don't want to sound like a horrible person, but I'm mad I have cancer.  I'm sad I have cancer.  I'm angry I have cancer.  I just want to get back to my pre-cancer normal life and forget this ever happened.

Do you think that's possible?  I'm beyond fearful of the long-term side effects people talk about after treatment (ie other cancers, fatigue, etc.).  What has your experience been after beating this?  Do you feel your life went back to normal?

On a final note, thanks for telling me what I am feeling is normal.  While I have so blessed to have amazing and supportive friends and family, I feel like a broken record player when I talk about my fears and anxiety all of the time with cancer and I don't want to add any additional stress on them.  I feel like as long as I stay strong, my friends and family can and will stay strong.

anliperez915's picture
anliperez915
Posts: 741
Joined: Sep 2011

Hi M26,

Welcome to the group...hey I thought I was the broken record? Joking But seriously I did and sometimes still feel like a broken record...after a while I would just say that I was fine even though I wasn't. It's just that our family and friends don't understand unless they have gone through something similar. That is why joining this group is going to help you a lot, you mentioned you're not big with the face to face therapy...well this is perfect since its all done anonymous and you decide what you want to share or not. I'm really sorry that you're loosing your hair, I didn't lose mine but I did try to get mentally prepared just in case that I would. I was even thinking of buying beautiful scarfs, maybe you can do something similar if you still don't feel like wearing your wig.  

Hang in there sweetie and come back to let us know how you're doing!

Sincerely,

Liz

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Hi M26.  Life will get back to a "new normal".  Cancer changes us in many ways and you will view things differently than you did before so that's why we call it a "new normal".  As far as side effects and the like, that is very individual and hard to predict in the long term.  You are young so you should do well.  I can't say my life has returned to "normal" as of yet but I can tell you I'm very thankful to be finished with the chemo and to be in remission.  We all go through "scanxiety" just before our regular check ups/scans and that's part of the "new normal".

Don't worry about being a "broken record player" - who uses those any more? Laughing  It's important to be able to talk and share and that is one of the great things about this site - to share with others going through similar experiences.  I pasted a link to a site that has headgear.  I thought this might give you some ideas. 

HeadGear

Jim

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hi,

 My chemo, CVP-R did not cause me to lose "ALL" of my hair...it thinned really bad, especially throughout the crown area, but luckily I didn't lose all of it. I had a wig and head scarves on hand in case I did though. Your chemo is much stronger, so you will most likely lose it all. It's so hard to look in the mirror and see ourselves looking tired and worn down. There were days I'd look and say..."UGH"...what a mess! You will get through this and your hair will grow back, and in the end you will look back and see how worth it, it all was. It's easier said than done, but try to just stay in the day. What your feeling is just temporary and it will all get better in time. Please come here anytime and share your feelings...we all know how hard it is. Take care...Love...Sue

(Follicular NHL-stage3-grade2-typeA-Dx 6/10-age 62) 

M26
Posts: 3
Joined: Jan 2013

Hi Sue,

Thank you for responding to me. =) You are so right.  It is so hard to look in the mirror and see ourselves looking tired.  It's like as if chemo didn't make me feel crappy enough somedays, now I have to look crappy on the outside.  Blah I'm 26.  I should be out with my friends having fun not sick and embaressed with how I look.  Perhaps you are stronger than me, but if not, how did you find the courage and strength to tell yourself you're beautiful when you lost your hair? 

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hi M26,

   Hmmm..courage and strength? I didn't have much of either during chemo. I think being older helped alot. The wrinkles and saggy skin had already started before my cancer diagnosis, so that part didn't bother me. However...the dark circles under my eyes, and tired  drawn out look was hard to look at in the mirror. Make-up helped, but I was too tired to get out much, so most of the time I looked pretty rough. Just be kind to yourself and remember this is all temporary and good days are ahead. Your so young...I can only imagine how hard it is for you. Be as active as you feel good enough to do, and surround yourself with up-beat happy people. Your going to get through this, but I'm sorry to say there is an ugly side of the chemo process that we just have to go through. Stay strong and my prayers are with you sweetie. Love...Sue

(FNHL-2-3A-6/10-age 62) 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

Is that your pic Sue? You cannot be a day over 35....

max

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Hi Max,

 You are too kind! I decided to put my own mug as my avatar and give sweet Lizzy a break...ha! Ohhhh how I wish I felt like I did when I was 35...man...I could  move mountains back then...ha!

Sue age 62!!! Cool

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Whoever said youth is wasted on the young was so right!  Yell  Not sure I was ever able move a mountain - maybe a hill or two ;). Course all of us here know about climbing them.

Hugs Sue - you know we love you.

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

I think you look beautiful Sue. 

 

Emily

allmost60's picture
allmost60
Posts: 3149
Joined: Jul 2010

Thank you Emily...you are so sweet. I would love some warm sunshineCool to put a little color back in my cheeks, but alas, winter will be here for awhile yet. It's been spitting snow off and on all day.

Much love...Sue

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

M26,

I did 12 cycles of r-abvd around four years ago. That is a lot of cycles.  You will lose ALL of your hair. All of it. I even lost my eyebrows and eyelashes.   Three of the drugs cause hair loss, and there is just no way around it.  Your hair will start back within less than a month after your last cycle. It may be a different texture or even color, for a short period, or maybe forever.

 You have a lot going for you:  Young (under 30), early stage (II), and female (females do better with lymphoma, on average, than men). I was diagnosed at Stage III-A and 53 years of age, and went straight in to complete remission, and never plan to leave !   Several of us here have experience with abvd, since it is a common treatment for HL First Line.

Are you getting rituxan ? If your cancer has a lot of CD-20 cells, it is usually given. Rituxan can only help, and can't hurt. (You're biopsy report will say if cd-20 is common, and your onc will know anyway.)     "M-26" You aren't a British secret agent, are you :)   .

 max

illead's picture
illead
Posts: 476
Joined: Aug 2012

It's easier for us old folks to "buck up", our roads are heavily travelled.  You've got great days ahead, start looking for that new  swimsuit to go with the pretty new "dew" you will soon have.  Time will fly until then.  Happy thoughts, Bill and Becky

offspring420's picture
offspring420
Posts: 10
Joined: Jan 2013

So sorry you are going thru this.  You have every right to feel the way you do.  So glad to have found this site.  I wish we all could get together; it would help us having a support group - hugs are needed every minute of the day.  I'm 57 now.  In 2008, diagnosed with Diffuse B NHL - had to do new PET scan 12-6-12 as I noticed two lymph nodes enlarged in groin.  Pathologists can't figure this one out; as my PET Scan shows one thing; and the report isn't matching the SUV numbers; and the biopsy isn't conclusive.  I'm having the worst trust issues with doctors. 

I know how you are feeling; always thinking about what you might feel like in the future after all these chemicals.  Just go with the flow - but please make sure to always keep your records and be pro-active when speaking with your oncologist.  I went to two specialists for this; it's been since 12-12 since this all began and these doctors are vague; do not speak in lament terms; and haven't followed thru - not fair when you need to know what the next step is.  Have faith; know people are thinking of you and sending prayers, love and those hugs!

fullyloved
Posts: 38
Joined: Oct 2012

Hello! Just thought a young person needs to chime in here. My age isn't all that far from yours! I'm a 25 year old woman myself. I was diagnosed with NHL 9 months ago. I finished chemo in September. Being a young person with cancer can be a bit of an oddity. In the chemo waiting room I waited with the 50-80 year olds. I don't know that I ever saw another young person on the days that I was there.

I'm sorry to hear about the pain you are feeling....Cancer can bring so many emotions that slug us from all different directions, and hair loss can just add to the mix. I was blessed in that I was one of the few that didn't mind losing my hair, eyelashes, eyebrows, etc. In fact, I thought it was a very interesting experience. But my heart hurts for you....

I know one thing I thought was fun was finding all kinds of interesting hats and scarves to wear. I enjoyed letting my wild side out a little. Cool I had considered a wig, but everyone I had talked to who had a wig said they hated it, so I went with the scarf idea. I know, nothing is the same as your hair, but this too will pass, though it might not seem that way now. Now I have a shaggy head of curly hair! My hair was straight before, so I'm enjoying the new look.

As to long term effects later, we are young, so maybe it won't be so hard on us. Let's hope so anyway. I'm determined not to let that fear keep me from living the life I love, and I hope that in time you can do the same.

Just hang in there, and vent here if you need to! We all have had to do that on occasion to someone.

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi, I was diagnosed with large b-cell lymphoma last October. I understand your feelings about your hair. Initially it felt like the hardest part of having to deal with cancer. I lost my hair 2 weeks after my first chemo. I was given a wig from the American Cancer Society, and when I first tried them on none felt right. I kept going for ones that looked a little similar to my own hair. I kept eyeing a long wavy red wig, and finally tried it on. It felt right, and I love that wig and wear it all the time. My kids say I look like a teenager in it. It's a fun look, and I figure I may as well have some fun with a not fun situation. I have blond wig, also given to me, which is simply not me and I rarely wear it, and a brown curly wig that I bought, which also doesn't feel like me. It's hard figuring out what is going to make us feel good when were dealing with this and we don't look and feel like ourselves. I hope you find something that works for you, as finding the red wig has given me peace around my own hair loss. I also have a favorite hat which helps.

Liana

veedub's picture
veedub
Posts: 42
Joined: Jul 2012

as soon as i was able to pluck out a few hairs after my first chemo treatment, i shaved the whole thing (see my avatar), because there's nothiing more pathetic looking than the last little vestiges of disappearing hair. but i found that i like it bald. and unless i'm cold, i don't bother with hats or wigs. my chemo ended in late november, and my hair is beginning to grow back. it's pretty sparse, but it's coming along nicely. peach-fuzz--i can't stop stroking it becaus it's so soft. and my eyebrows and lashes are coming back as well.   when my hair comes in thicker i am going to buzz it really really short, like a quarter of an inch, so the shape of my head shows.

i really missed my eyelashes when they were gone--that was the worst. you know when you get something in your eye and you want to move your eyeid to get rid of it--there's nothing to grab hold of! but with plenty of eyeliner nobody can tell.

have you seen the youTube videos of talia joy castellano? she is an adorable teenager who has been sick with various cancers since age 8, and she decided to really get into makeup. she says that makeup is her wig, and she got so good at it that she became a guest on the ellen degeneres show. she has attitude for DAYS. not even 14 and very sick, but an unconquerable spirit. i'm old enough to be her gramma, but she's one of my role models. (she says, "if i had hair, i'd flip it!" which cracks me up.)

oh, and while we are on the subject of bald-headed beauties, try googling "henna crown." you can turn your head into a canvas for wonderful designs. bald is beautiful, baby!  or try a bindi (http://en.wikipedia.org/wiki/Bindi_%28decoration%29) on your forehead for an exotic look for special occasions. and if you really feel the need for a hat, http://www.etsy.com/shop/GypsyLoveHeadbands has some really fabulous ones which are suitable for dressy occasions in warmer weather. they are pricey, but worth every penny. a friend bought me one and i liked it so much i bought three more.

it's your head--show it off! it might just be another body part which enhances your beauty insteadof detracting from it.

beijos,

v

jimwins's picture
jimwins
Posts: 1971
Joined: Aug 2011

Well said V and hope you're doing well.  I can't tell you how many times I poked myself in the eye when the eyelashes were gone.

 A clip of Talia from Ellen: "A little fishy told me just keep swimming "

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 998
Joined: May 2012

Vee,

Every line was a gem and a delight to read !

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