continued Tissue expander pain!!

Hi Ladies,

Haven't posted in a week or so and I'm glad to see we're all still here and getting along as best we can. I've been in a funk of all funks for the last week. For some reason I just broke down crying on the way to work the other day yelling I WANT MY LIFE BACK!!!! I'm tired of having the expander from hell and just overall feeling crappy! I've gotten to the point when people at school stop me to ask how I'm doing I tell them they don't want to know. I get comments like "You look so much better" etc and my smart a$$ replay is "Looks are deceiving!". I know they're trying to be supportive and genuinely want to know but I have just started getting really angry and touchy about this! At diagnosis and going into surgery I never cried; didn't cry until I first saw the bandages and stuff 2 days afterward. Then this past Thursday the dams broke. Maybe it's a delayed reaction. I have an appt. on the 14th with physical therapy to get fitted with a lymphedema sleeve (more joy!). I have to constantly stop and tell myself it could always be worse (I'm actually going to cross stitch this as a reminder). Some of you guys have been, and still are, in your own hell in dealing with everything. I know I am truly blessed for not having to undergo chemo and rads but this still sucks for me. I know I've got to leave the pitty party and stop drinking the "whine" but can't seem to shake it. The up side to the depression/funk/anger/whining is that I'm shopping alot online for Christmas. I'm almost done but will be out with the masses black Friday (If you want to see previews of the after Thanksgiving ads go to bfads.net-they post new stuff everyday on what's going on sale black Friday).

Traci and Katie I'm so happy to hear you're both doing well. Katie, did you come home with drains and did you stay overnight? Please keep us posted on how yall are doing.

Thanks to all of you for letting me rant. I truly couldn't make it through all of this without your support.

Margaret

Hey Katie,

Thanks for the encouraging words. I can't wait for all of this to be over so I can start to feel "normal" (whatever that'll be). You're right about everything and keeping it in. It's my nature to meet problems head on and deal with them then it hits me after it's over with...just call me Miss Delayed Reaction! I think I was so worried about Larry and the boys (28 and 25 and I still think they're babies!) that it took a while for everything to sink in.

Shopping does help though...I know I have to be done with everything before I have the exchange on Dec. 18th. I've always shopped early though even before BC entered my life. I still like to go out and mingle with the crowds especially when I don't have to be there looking for gifts (that's the sociologist in me-we love studying people and their interactions with the envronment!). 

I'm so glad the surgery went well and isn't nearly as bad as the last one. I so wish I'd found this board before the mast so I could have at least had some idea about how the recon process would be. I know it isn't bad for everyone but for me it just sucks! Stay strong and again, thanks for the encouragement. You're a gem!

Margaret

any recent comments?  well i was online surfing the net and came across this site i found it interesting seeing how i am 34  was diagnosed in june on the right breast stage III 5 cm large  and just had breast surgery on november 1,2007 i live in nashville tn. and i do have chest expanders in.  i still have the drains in!! (pain in the but in fitting clothes and taking shower!!)   I was wondering if the next step i take is all it cracks out to be..... ( talking about radioation) sp<  i know it is 4 more chemo treatments and then radioation for 30 treatments i imagine the running @ for 5 days back and forth to dr.s is but what @ the actual treatments?is it painfull? what r the side affects?  i know when i took my first 6 chemo treatments i had a drug they call the "red devil" it burned me from the inside out!! it felt like a bad sunburn on the inside of my chest and arms. I  couldn't stand to be touched. anyone experience that? i know for my last 4 more treatments i am not taking that drug!! (thank god!!) well everyone gl and keep up the good work!! and just wanted some input and check out the site             cindy s

Hey Chris,

I had the mast on the left with one expander July 12th. I'm scheduled for the exchange Dec. 18th and I can't wait! Fortunately I didn't have to do the chemo or radiation (the DCIS was in 2 different spots in the breast; one was grade 2 [near the nipple] and the other 3 [near the chest wall]). If they'd done a lumpectomy I know I'd look stranger than I do now. The other issue was with the chemo drugs (I have major drug allergies) and the rads (my skin that never sees daylight is very white - almost ghostly!) and the doc was concerned about my skin blackening. I teach college and was concerned that the rads would really get in the way of me being able to teach this semester (of course the tissue expander has taken care of that-I teach at school 2 days a week and the rest of the time I teach online). The mast was best for me for sure.

I had a breast reduction to get down to a "D" years ago. When they did the mast, they did a lift on the right and now I'm a "C" which is fine (no more bras for me ever!). 

Hey Cindy, welcome! you've come to the right place for support. I certainly couldn't have gotten along without them. Jean has been through it all and she's definitly a go-to-gal when it comes to chemo and rads! Drains suck! I had one removed a week after surgery, a second 2 weeks after that and the final "testicle" stayed with me for a month! It does make it quite challenging to shower, sleep, dress, etc. but very necessary. The most important thing is to keep them flowing and strip the lines out several times a day. You don't want anything to clot in the line and stop the drainage.

Jean, Yikes!!!! My legs got weak when I read what was going on with the trouble you've had recently. Hopefully things will start to work in your favor and no more infections.

Traci, hope you're in a very peaceful sleep and your tummy starts to feel better soon. I also walked around with a pillow for about 2-3 weeks after the hysterectomy. Just try to stay awat from anyone with a cold...you wouldn't want to catch it and sneeze, splitting yourself open like a pumpkin!

Yall have a good night.

Margaret

Good Morning Jean,

My pain with the expander has existed since the surgery and it does go under my arm (they did 100ccs at surgery). The expander migrated there shortly after surgery and now at 760ccs, it takes up almost all of my armpit. The PS said that was okay and that he'd make sure the implant would be in the correct location when I get the exchange (who would want a boob under their arm anyway?!?!).  I too have problems lifting my arm and have since the surgery in July (probably a combination of the migrated expander and a mild case of lymphedema). To help with arm movement, I sat with my arm propped on my head to stretch the arm muscle after surgery. I also did a "wall crawling" exercise to help with movement (walk your hand up the wall about 10 times 3 or 4 times a day or as much as you can stand it). It has helped some but I'm still not able to do much with that arm. It feels like lead. Hope you're feeling better.

Margaret

Margaret: -

Thank you so much for your input. I have had 2 infections which required "office surgery". I feared the pain and swelling under my arms was more of the same...infections. I cannot imagine going thru this for months. I wonder if I can convince my PS to do the exchange long before I reach 750cc. You said your are at 760 now, are you ready to have your exchange? I was a D but now will be very happy just being a B, infact as much as it hurts I am about ready to say, make it an A (LOL).



Katie -

Thanks for the camisol idea. I will check Walmart. I did get a couple exercise bras but they feel extremely tight especially under my arms. The funny thing is when I remove my bra, I feel like I still have the darn thing on and pushing into my arm pits. Boy I wish this was over. I wonder how many more surgeries until I can finally relax, I've had 4 since June.

Did any of you gals have rads AND expanders?

I'm heading out to Walmart myself, Katie. Thanks for the tips. Today I had fills again - it was another 100 cc - a total of 300 each side in a week! Gulp!

Today is 4 weeks out from my bilateral...  we discussed that the PS would probably be able to do the exchange after the first of the year since I am not going to have chemo.

I did not have real bad pain with my expanders, just a tightness across my chest and occasional stretch pains. I had my exchange surgery on the 2nd and the tightness is almost gone. I hope others who have had the pain experinece the same relief that I found with the exchange.

Sheila

Hi Ladies - I had an expander placed this past Friday, I had left mast 5/06.  I can't believe the pain associated with this.  I had my mast on a Friday and was up Saturday curling my hair - I was sore and my arm was stiff but I could manage.  By Monday I was fully functional.  I had the expander placed on a Friday and today is Tuesday and I still am extremely stiff and still taking pain meds.  My ps I think thought I was being dramatic when I spoke to him yesterday and said that this is much more painful than the mast.  He added an Rx for muscle relaxant along with antibiotic and pain meds thinking maybe I'm having severe muscle spasms in my chest.  Does this go away?  I don't think I can tolerate this kind of pain for months and months, I have a lot of expansion to do as I am a DD on my good breast.  Also, do the spasms come back with the fills?  I thought this would be the easy part of this BC journey - thanks for your help - Sandy 

Okay Ladies, this may be a real stupid question, but someone told me that I cannot fly until my expanders are 3/4 full? Is this true? She said she could not fly because she would get air pockets in her expanders and her PS said no flying until she was done. Has this ever happened to anyone? I'm going to ask my PS tomorrow, because I was going to go to FL soon.

Anne, I also had the spot on my rib that the bands on the bras aggraviated also. I actually wore the shelf bra camisoles or the fruit of the loom sports bras a larger size than I normally wear and they did not seem to hurt the ribs as much as when I wore a tighter banded bra. I thought that the rib pain was just me.

Sheila

Thank you Margaret. I have 3 Cavaliers and the one that is pictured is 11 years old. I also have a 10 year old and these two are both retired breeding bitches (like me)  that I adopted. I also have a 7 month old puppy that I found on Craig's List cheap in August - can you believe someone  bought him and after a month or two didn't want him because she felt she was allergic and didn't know how to train him. I was diagnosed w/bc in Sept. and I honestly didn't know how i would get through the surgery and recovery with a new puppy. I hadn't trained a puppy for years. Jasper is a bundle of energy and a real handful, but I've become attached and sure can't get rid of him now. I'm lucky to have them all. Oh and I have 2 cats. Divorced with 5 animals and BC. Geesh!

Sometimes when I read some of your stories about how supportive your husbands or significant others are, I admit that I  begin to feel a bit of a pity party coming on becauses I have a fear of spending my last years alone. This whole journey we're on is a strange and frightening one.