June 2011 A/C & T Groupies Unite!

julee_stayin_strong

kks_rd:

i know how you feel, drawing eye brows on everyday is rediculous. sometimes they look right, sometimes they look wrong, sometimes i feel like a clown!!! LOL  and yes, i am also a little tired of not having hair, except for down their!!! LOL i went thru the drive thru at mcdonalds the other morning and i usually just wear a hat, so as i turned to get my $$$ out of my purse, the guy goes to hand me my drinks and says, "here ya go SIR." REALLY!!! DO I LOOK LIKE A MAN?!?!?! as i turned to say thank you, he saw that i was a girl and i never saw him again. LOL  i'm sure he felt bad, but... it was weird being called a man.  So hang in there girl!!! don't let it get you to far down, this too shall pass....one day. lol

julee_stayin_strong

so, i had my right breast removed and i just finished my last appt. of physical therapy last week and my right arm has been swelling up for about 9 days now. Onc. says i may be retaining water or having too much salt. PTherapist says it's not lymphadema. So i guess it's a mystery. Woke up this morning and my arm is swollen more and my knuckles are almost non-existant. what the heck?!?!?!? has anyone had this problem or know anything you can tell me??? I need some answers.

kks_rd

BobbieJo, that is a puzzler.  My neuropathy has improved quite a bit in the past month or so; now I only feel it when walking or on my feet for long periods of time.  I can't remember a time when it was present only on one side.  I suppose one option is to go ahead with the chiro appointment if you feel comfortable, with the hope that it might help...?  Either way, I am sorry to hear you're uncomfortable.  Hang in there!

Julee, thanks so much for your response.  I've been in good spirits lately but just spent like 45 miniutes browsing through the Hair, Hair, Hair thread looking for inspiration.  Seems most people go topless around 3-4 months PFC or so (except our brave Michelle, who is already rockin it)!  I hate to say it, but a big part of me is giving up caring.  Since my first surgery I've been out of work and generally going without makeup, including eye makeup.  I feel like I look crummy but honestly the effort needed to look halfway normal doesn't really feel worthwhile, especially since that would only get me to *halfway* normal.   Your timing is incredible though because I am contenplating whether I have it in me to go back to work for 2-3 weeks until my next surgery, and all this worrying about my appearance is undeniably a (small) factor in the decision.  Thanks for helping me recognize that.

In other news.... I did have some spotting last week which makes me wonder if my ovaries are kicking back in.  Wouldn't break my heart to say goodbye to the hot flashes for a while!

kks_rd

OMG.  Julee, I also intended to write you back about the swollen arm.  You think I can blame forgetting to do so on chemo brain??  I just got so carried away writing about everything else, dear lord!

Has your onc actually SEEN your arm?  What about your surgeon?  I guess the reason I'm skeptical about them saying it's not lymphedema is because it sounds like it's only on the one side.  If you were having swelling from too much salt, etc. wouldn't it be more bilateral?  One other thought, is it red/hot like a cellulitis?  I hope that's not the case but if so, it's easily treated.  Good luck getting to the bottom of it.

Also Julee, when I looked at your profile I saw there was an older post where you mentioned your sis got insurance approval for a mammo.  How did things turn out?

Hugs to all!

LuvRVing

Julee - is your PT a certified lymphedema therapist?  If not, see if you can find one.  I think lymphedema is a likely suspect for your swelling.  You can do lymphedema self-massage and see if it helps at all.  You might take a look at this YouTube video and see if it helps at all:

http://www.youtube.com/watch?v=a9FPhFDOB8E

Yes, I have completely abandoned the wigs and I'm wearing a hat outside in the cold.  Otherwise, I am rockin' the bald!  Now, to be fair, I'm not working so I don't have the issue of how I look at work.  But my kids have encouraged me from the beginning to do whatever makes me comfortable.  Today one of my daughters applied some temporary color to my short little mane.  It was supposed to be a copper-mahogany-brown color, but the red won out.  She likes it but I'm not so sure...it will wash out in 28 shampoos or sooner if I shampoo a couple of times when I'm in the shower...lol.  I wanted it to be darker, so I'll probably try again as soon as this color fades away.

Bobbie Jo - I am not 100% sure, but I think that neuropathy can show up PFC. I think I read up to six months or so. I have continued most of my supplements for this reason.

Binney4

Julee, has your doctor ruled out a blood clot as a cause for the new swelling?

If you experience any redness, warmth to the touch, fever, or increased pain, it could be an infection called cellulitis. If so, the infection can spread VERY rapidly and is an emergency.

As LuvRVing suggests, this really does sound like lymphedema (water retention from chemo is generally not limited to one arm, but lymphedema often is), and a PT who has not had special training in lymphedema is not qualified to diagnose it. Here's how to find a well-trained lymphedema therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

While you wait for a proper diagnosis, keep your arm elevated as much as possible -- on the back of the couch while you're watching TV, on pillows at night. Don't lie on that side when you're resting or asleep. Drink PLENTY of water (it dilutes the lymph fluid and helps it flow). Take time every hour or so to take several deep abdominal breaths (that stimulates the largest lymph vessel  in your body and helps pump the whole lymph system). Remove all jewelry from that side if you haven't already, and don't wear anything that constricts the arm, wrist or chest (no tight or underwire bras).

Lymphedma is NOT a do-it-yourself project, but if you're going to try any self-massage on that side of your body it should be very slow and kitten-petting gentle, moving only the very surface of the skin. Anything deeper can actually compress the lymph vessels and do more harm than good. (Might be best not to mess with that until you can see a well-trained lymphedema therapist for help.)

Hope you soon have real answers and great help! Be well,
Binney 

Southamptonmom

Jullee!!! Call the doctor! I hope you find your answer today. The one thing that has frustrated me the most, is how we get so used to getting answers from everyone in the doctor's office, but the doctor. I would be worried about a DVT and infection. Binney and Michelle are right, it's most likely lymph edema. Hope you feel better.

BobbieJo, Neuropaty should be bilateral, not one sided. I know my neck has been bothering me, along with all my joints. I have noticed when I wake up, my right arm is completely numb, and improves as I move around in the morning.

Getting nervous. Surgery is next Monday. Julee, If it helps any, I feel like I look like Uncle Fester. Happy Halloween.

cider8

Rose!  I've been feeling like Uncle Fester, too!  On a more positive note, I like thinking of this Uncle Fester phase as a crysallis phase instead.  

kks_rd

6 weeks PFC and lasst night it happened.... I spotted eyelash regrowth!  They're transparent little sprouts, but they ARE there.  So excited!!!  Come on lil sprouts, grow!!

LuvRVing

I said that now that my TEs have been removed, my breast area looks like a hairless sharpei! 

I have those little transparent eyelashes, too.  It doesn't seem very effective to try and use mascara on them, at least not yet.  The same with my eyebrows...I have about 3 hairs that are colored, the rest are almost transparent.  It helps me to see where I need to draw them in, but by themselves they are almost invisible.

Rose - good luck with your surgery next week.  I was surprised that I was able to leave the hospital after just one night and I wasn't in very much pain at all.  I don't remember, are you doing any immediate reconstruction? I had more discomfort from muscle spasms from the TEs than pain from the BMX.

Southamptonmom

Michelle, no reconstruction for now. I found that everyone else wanted it but me! Just like the wig I bought. Didn't need it.

Kat, You're funny! I want to cheer on the little sprouts as well! I keep looking, but don't see any yet.

Paula, I'm surprised my daughter hasn't come up with a crysallis to describe my looks. She calls me the Bald and the Beautiful. I wouldn't like that coming from anyone but her though!

How is Julee?

tldrose

wow - small world. I've been like BobbieJo trying to get my life back to what used to be normal, only to find there isnt "normal" anymore..I have to create a new normal now.. I'm also experiencing alot of the neuropathy/tingling side effects, and not sleeping well and also sick of being bald, etc right along the line with yall on here..Feels great to know I'm right there with ya..I wonder how long it takes for our hair to grow back in? even like a short pixie length? I alternate wearing a hat or wig, depends on the weather and my comfort level too - at home I can just go without I still have eyebrows, though very thinned out and only a few eyelashes left, but I think some are starting to regrow - almost transparent like LuvRVing said. I also was wondering when everyone got their medi-port or "ports" removed? I cannot wait to get mine out - I despise it. It causes me discomfort alot and I'm "aware" of it constantly. I know its okay and healed properly, but it is sensitive/nerves etc. I have my last and final revision surgery in Dec and am waiting for the plastic surgeon so pick the date - am nervous, but want it over so I be done with this "journey" and move on.

LuvRVing

Tldrose - I made the decision that I would have my port removed when my PET/CT was clear.  You should talk to your MO about it and see what s/he recommends.  Mine doesn't bother me at all, but I see this as another milestone in my recovery.

Rose - my daughter calls me "chia-mom"...lol.  Now I hope my hair grows as fast as grass!!!

Southamptonmom

TldRose, Doesn't it make you wonder who the hell came up with the word "journey?" It's more like a road to hell!

LuvRVing

My friend who has had BC 3 times said it's like traveling in a parallel universe.  I vote for road to hell!

Southamptonmom

I'm waiting to get through the "and back" part...

LuvRVing

Tldrose - my port came out today.  It was not a big deal, quite painless.  Mine didn't really bother me, but getting it out feels like a major milestone accomplished!

justme1

luvRving  i got your port out ?? YAHOOO thats great news! I cant wait to get this pic line out !!! dont hurt me but just is there and i want to be done : )

tldrose

I agree that this so called "journey" we are all on is more like a paralell universe mixed with the road to hell! I cant wait for it to be over either!! LuvRVing - Congrats on getting your port out!! My Onc said mine can come out 2 months after my chemo ended..which will be in Dec - so for my revision surgery, I will have everything done at once - port removal included - I agree that it will feel like an acomplishment when the port is removed - I can't wait! I'm an anxious to have my last surgery over with, port removed and then can finally feel "done"!! I'm sure I will have additional follow-ups and testing over the next 6 months, first year or so, but my Onc says I have been cancer free since my BMX in June.

twistedsteel

Hi, All!

I am going in for surgery, MRMx. Right boob, tomorrow. I am scared and yet kind of excited to get this damn cancer out of my body. Known about it since April 25. Hoping it is all dead. Will do about anything to avoid more chemo. Like a little kid not wanting to eat spinach... please, please... I'll do anything if you don't make me take any more chemo... please... 16 chemos is enough! Please...

I am 3 weeks PFC. some eyelashes, some clear eyebrows, some fuzzy clear head hair, I think. No Italian girl lip hairs yet... thank goodness. 

 This "journey" has been a little slice of HELL. I cannot be done with it fast enough. A year of my life, by the end of it, stolen.

Oh, having only uni mastectomy, thinking of a take off on the tshirt that I've seen and printing up one for myself... yes, there's only one, the other one tried to kill me!

TS 

tldrose

twisted steel - good luck on your surgery tomorrow - thoughts and prayers for you. I agree this "journey" has been a slice of hell that I cannot get over with fast enough either! I am only 2 wks PFC and want my life back! Great idea for the shirt - go for it and have one made! I like that saying too, I  would get a shirt like that, but since I had the DIEP flap done, the tissue that replaced my breast tissue after my BMX is my own, so it can't kill me, but it felt like the 8 rounds of chemo almost did! To me, that the was HELL part! Good luck tomorrow! Keep fighting!

kks_rd

Keeping you in my thoughts today TS.. and in the days to come... we're rooting for you!!

LuvRVing

Good luck today, TS!  Hope you find it's not as bad as you were expecting and you heal quickly.

pebee

Hope the surgery goes well - sending thoughts and prayers your way for a swift and uneventual healing.

Don't forget to pack a wool hat - it is cold in the operating room.  They can put a surgical hoodie over it.  That was the best piece of advice I got...

justme1

twisted steel GOOD LUCK!! THinking of ya !! I am right behind ya whenever my insurance decides to let go of the paper work and approve meeeee. Check in when ya can  (((hugs)))

julee_stayin_strong

Thanks everyone for the info. YES IT IS LYMPHADEMA!!! so, i felt i needed to accomplish something and i painted the bathroom.(now i know... i can't do stuff like that), NOW THAT I'M AN INVALID!!!! i am so pissed off this week, all my family, my onc. and my lymph guy yelled at me. YOU CAN'T DO STUFF LIKE THAT!!! ok, so this week i really haven't wanted to get out of bed, my first week that i've actually been depressed and want to cry, did shed a few tears. don't think it made me feel any better. so, life goes on. had my 8th Taxol on Monday and have noticed i am growing peach fuzz on my head. WOW, what a surprise.   Hope everyone is doing well, try to have fun this weekend.

Binney4

Julee, lymphedema is a steep learning curve, but with good treatment and self-care you sure won't be an invalid. Please drop by the Lymphedema board here and "meet" some of our "swell" sisterhood -- they're athletes, marathoners, women in all manner of careers. It's tough dealing with a chronic condition, but we sure don't want you to feel alone with this. Also, StepUp-SpeakOut.org is a lymphedema information and resource site developed by women from these boards.

We've got your back! Tell us how we can help,
Binney

Southamptonmom

Surgery tomorrow. (

LuvRVing

Good luck, Rose!  Wishing you an easy surgery, no complications, and speedy healing!

Hugs,

Michelle

kks_rd

Thinking of you Rose!!  Hugs and best wishes!