June 2012 Mastectomy

curveball

@NanG

funny how things happen. I was near my surgeon's office today for a support group meeting and dropped by the desk to ask about similar symptoms. I don't have TEs but do have a feeling that is different from the tight muscle sensation of right after surgery, and sometimes can see strings or cords under my skin. This is all on the underside of the arm, where I had nodes removed, but I don't know why it couldn't happen below the breast as well. The surgeon's nurse said it was some combination of stitches that haven't completely dissolved yet and/or scar tissue, and I should keep doing my stretching exercises but only to the point of feeling the stretch, not until it's painful. She also said it can take several months, but the scar tissue does eventually soften up and stretch.

Jinkala

The thing with my Mom is that because of strokes and not taking good care of herself while living alone, her mind is not what it used to be.  The past is easier for her to remember though she has problems putting things in relation timewise.  The only experiences she has had with cancer is dealing with my Dad's cancer back in 74-75 when things were a lot worse as far as treatments go and his was widespread when they discovered it.  That was not an easy year for her to deal with.  I know that if we don't break it to her the right way, her mind is going to equate cancer and chemo with her experiences with my Dad.  My Sister is now her primary care giver and she is being really well taken care of so while her physical health has improved greatly, her mental health has not.  She refuses to leave the room she lives in (other than to use the adjacent bathroom) and can't hardly use a phone because of poor hearing and inability to really remember how to use it right without help.  My Sisters, Brother and I had decided that it would be better for her not to have to know that I was dealing with cancer but with chemo in the picture, we're working on how best to explain things to her.

Oh - and yes - Chemo is definitely in the picture.  I'm going to be getting all sorts of scans and tests this week and next.  They want to start me on the TCH regimen as soon as possible.

bevg49

Hi to all and sending healing vibes, both mental and physical.

Well, I went for my first MO appointment yesterday. I consider myself so lucky. She explained that the invasive part of my cancer was small and was gotten out even before surgery, in the biopsy. She said no one in their right mind would put me on chemo but I am starting on Femara which I have to take for 5 years. Hopefully the side effects will be none to minimal. I still have an approximately 1 inch opening in my original surgical scar. I know it's because of the pressure from the hematoma. It's still leaking fluid but thankfully it's really not blood anymore, just serus (sp?) fluid. I just wish it would stop leaking and close up. I had my original mast. 6/7 and this seems to be the illness with no end. I should not complain, should be glad I don't need chemo and that I got through the hematoma and 2 emergency surgeries but sometimes it all seems like a lot..... Sorry to whine. Oh, one other thing..... My liver, for some reason, seems to be swollen. The MO did blood work to see what's up. Hopefully, nothing much. 

luckykitkat09

Jinkala-

I wish you lots of luck and love.

-hugs- one step at a time

luckykitkat09

First full today! I'm waiting right now. I'm nervous!!! I also forgot to take an Advil so uhhhh this might be tough. I hope I can drive tomorrow. For an odd reason I woke up at 3am and went back to bed. Can't sleep on my right side fully but I'm getting there.

NanG

junebug hug....<3 miss u ladies.  thinking you are all moving along with treatments and going forward in your journey.  im very blessed....very very blessed but i also feel weird.

its not that im not greatful.  its just that now i am not sure what to do with myself.  i feel sort of like one of those soldiers who comes home knowing that his comrades are out there fighting.  he's recieved at home with cheers and praise and drinks and girls....when in his mind he knows his boys are out there in the dark huddled in a mud pit or sand dune....watching and praying and waiting....

...thats how i feel about you girls...

i don't know what our stories are determined by.  if they are predetermined by God, if our choices head the path, or if its some small part of a greater thing....but i know that meeting you all and knowing your hearts for this time has changed my life...and i think changed my story.

i was thinking about this tonight and wanted to write you all and tell you that.  your journey right now is impacting me.  when my kids piss me off, if i feel unsure about my chesticles, if i am ashamed because of my weight gain or any of the above non-important issues....i remember that you guys are going through treatments and waiting and i feel like i have that much more patience to get through it because you guys are perservering through the battle...i can be a better person.

i hope that makes sense and i hope it doesn't sound self righteous or arrogant. 

ive been thinking tonight.  i talked with my doctor and he said i can start running again.  its kind of a long story but, i used to be a runner.  i was doing really well...and then my brother in law was killed suddenly in a car accident.  i quit running.  shortly after that my mother in law died from secondary liver cancer. we never did find out what her primary was.  seven weeks after her dx she was gone.  and i couldn't run.  i wouldn't run.  i didn't want to run.

 but now i do. because of you guys.

i saw that commercial on tv about running for the cure or something like that and i realized that i want to run for the junebugs.  im still praying for you and i just now have this resolve to run...and raise funds in your names because without the research done and money raised...my dx wouldve been different. my story would be different. 

so....thats it.

ive also added a junebug design onto my pow wow regalia and that will be permanantly in there, so that whenever i dance you girls will be with me in spirit.    its a small junebug though.   the big ones look pretty freaky!! lol.

NanG

Jinkala

Whoa - I don't think I ever need to see a junebug that close up again! LoL 

I am moving along with treatments though I really wish I had been done at the end of the surgery.  Still, we do what we must.

I'm spending a bit more time on the chemo and HER2+ forums these days.

JenH13

I think i had a cute cartoony picture of a junebug in my head lol.  Thats the "mommy" in me thinking.

I pray for all of you going through chemo right now.  Hang in there!! you will get through it.  I am still getting Herceptin but it feels almost more like a party when I go in now to get it.  It's like the old TV show Cheers ( I am dating myself here )  I walk in and the nurses are " Hi Jen!" a few of us "regulars" chat about how we are doing and such.  Right now I am in limbo on Rads.  My MO said no, my RO said.. maybe.  Sooo my RO is presenting my case to the Cancer Board in 2 weeks and then see what they say.  In the meantime I start PT next week.  Apparently I have cording in both of my arms, right(Cancer side) not nearly as bad as the left side which is quite painful.  ick!

Other than that things are going well. I started back to work full time this week, kids are getting into their "fall"sports already football, karate and gymnastics I seem to live at those gyms/fields now and school for them starts on Wed 08/01 (YAY!). So busy time but I am loving every minute of it because I can do it all!

Off to practice now, Much love to you all!

Oh btw, anyone watch the opening ceremonies last night? I kept waiting for something cool to happen...:(

<<hugs>>

my3sunz42

Nang - wow ... again I know just how you feel ... limbo land, waiting for something to happen, gracious, scared, grateful for this wonderful group of ladies joining me on this crappy adventure, wondering what my 'new normal' will be and how I'm going to make a difference. I know I've been blessed, but somehow it just doesn't seem right knowing there are so many others out there fighting this nasty monster. 

I've picked up my running shoes and began my march 2 weeks ago ... starting to feel like myself again with the exception of these 2 bricks over my heart. While I try to forget, they are there reminding me that things just aren't what they were before. So I'll continue to search for what life is supposed to be and thank God I've been given this 2nd chance.

Thank you June Bugs for staying the course ... you are an amazing group of ladies and I feel so blessed to be a part of this team.  

loriio

Thanks for the beautiful words NanG. Good for you on the running. I need to start working out again but I am not a runner. I saw a pin on Pinterest that said something to the effect of "if you want me to run with you, I'm going to need some motivation like a scary clown chasing me with a bloody knife.". I admire runners!



I do miss the June Bug interaction as we all move forward. Is anyone else an Olympics junkie like me? We can share our favorite moments. Like JenH, I kept waiting for a spine tingling moment in the opening ceremonies but other than quick glimpses of Daniel Craig and David Beckham, no tingles for me.

emilybrooke

Hi Ladies -

I feel like I've been neglecting this board =( I've been hanging on the chemo board for a bit but had a three day "time out" I lost it - sad, crying, inconsolable for a few days. I had "minimal" side effects to my first round of AC on Monday but I guess the fatigue got to me and I was having a pity party for a few days. I was so fearful of catching a cold that I didn't leave the house for a few days. Not the best idea because I think the cabin fever put me over the edge. I even neglected my stretches =( which I have been so on top of since the BMX. But today is a new day, I will be social this week, I will exercise, I will not feel sorry for myself.

In other news, I completed my fills and no longer have to go to the PS every Thursday morning.

Nan - thanks for your words, I feel like you always have the right thing to say! I am glad I saw your post when I logged on this morning. It definitely helped fuel my positivity today.

Lori & Jen - I agree, opening ceremony was a bit of a letdown. They lost me during the Mary Poppins/oversized creepy child in bed thing.

Hope everyone has a good day

Lynn27

I admit it, I'm an Olympics junkie and so I consider myself something of an authority on opening ceremonies.  Sorry, any Team GB comrades out there, your planners missed the boat.  The fireworks were great and I liked the way the torch came together, but that was it.  The "queen" jumping out of the helicopter was just weirdly undignified.  The way the history of Britain was depicted was depressing and fairly incomprehensible and I'm a fan of British history. 

me_4givn

Hello Girls,

Sorry I have not been around. Lots have happened, all good. Made it back to Cali and started back to work. I saw both my MO and PS last week. I had my last fill and now await the exchange in Oct. I also started my Herceptin. I am hoping to go weekly because of my prior ABVD (I had Hodgkin's Lymphoma in my early 20's). I am nervous about taking large doses of Herceptin because of the prior chemo effects on my heart.

Bev- So happy for your drains being out. I leaked for a little while. Some gals leak for a while then it slows down. More of a hassle! Gosh, I am glad you were not hurt in your fall!

NanG- I have never heard of the "string things" you are talking about? I have weird loose skin on my left foob. PS says it will be fine once the exchange happens.

Glad to hear everyone is doing well for the most part. Huge hugs to those facing the "talk" with daughters. Man, that has got to be a hard one! Love and truth

Hope you all have a wonderful day and get to sleep in the most comfortable position for you

me_4givn

Just wanted to send out love and hugs to you all!! SO brave! SO proud of you all!! SO blessed to be here with you!!

Thanks for helping me!!

NanG

lol@ loriio! i guffaw laughed at the scary clown/bloody knife image!!!!

im going for my first run this morning. which is quickly turning into this afternoon!! lol.

i am very very very very irritated with my skin!!! don't know if this is happening to anyone else but its likeim a teenager all over again. i think because my hormones dont have any breast tissue to land in i have broken out so bad all over my neck up to the bottom of my ears and across to my lips. it hurts. im not even sure if its acne or a rash. ? i have no idea. but i had this when i was pregnant too...so im thinking its hormones.

luckykitkat09

@nang

Maybe it's the meds? I broke out after I was done with the antibiotics It's getting better for me now though

luckykitkat09

Okay so I had a double bilateral mastecomy on 6/20/12 and had TE's put in.

luckykitkat09

Okay so I had a double bilateral mastecomy on 6/20/12 and had TE's put in.
During surgery I had 150 cc's on each side. Last week I had my first fill and had 60cc's put in and was sore for the day but was fine. Last week I had the chills for an hour or so.

Today I came home after my second fill which my PS put in 90cc's today, and I'm having somewhat horrible chills right now and some back pain. I'm thinking it would be okay tomorrow. I don't feel the need to go to the ER. I don't have a fever. I have pain in the center of my chest between the breasts but it's minimal now after some hydrocodone and advil.

Next week I'm going back down to 60cc's. I think going to 90cc's was a bad idea, luckily my PS didn't want to do 120cc's. Should I see how I feel tomorrow? Any suggestions???

taismommy

HI  Junebugs,

Sorry I have been away so long but depression, cabin fever, and lack of mobility took its toll on me. I am trying to become more active on this site because I feel so much better after i read here, I think i should contribute more. Maybe someone will be touched by something i say like i am touched by all of you especially NanG!

With all that said, i have some questions

1 Does anyone else still have the 3rd Foob under your arm?

2 Has anyone tried sleeping on the side or stomach? any eta on when we can?

3 Are anyone elses TE randomly rock hard?

Oh, I finally got my chemo start date August 16, kind of scared but i know its something i have to do

Thanks for the answers and continued speedy recoveries and healing for all of us!

luckykitkat09

Hey taismommy,

I'm able to sleep on my left side, forget about sleeping on the stomach..I don't think that's a good idea.
My TE is somewhat hard after my second fill. YUP!
Umm no idea about the third foob, I don't have that. GOOD LUCK with chemo!!

taismommy

hi kathyhong,

I just cant take sleeping on my back anymore, since im still so swollen on my right side(node remove) and i cant sleep on my left(never could) im stuck on my back.Argh!! I spoke to my 2nd mom, shes a nurse, she said since i am sleeping on my back the swelling has no place to go but back. Her only suggestion is to try sleeping straight up.

least im not the only one with hard TE...lol, i thought something was wrong...

Jinkala

taismommy - I still have the swollen lump at the end of my mastectomy scar under my arm.  None of the doctors that have seen it seem concerned.  I'm not even sure if it is actually swollen at this point or just the leftover fat from my breast that extended into that area.  It's about the same size as the fat on the other side though it's still somewhat tender and feels harder.  My BS said that if it doesn't go away and it's a problem that it can be fixed at a later time.

I'm a back sleeper so I can't answer that.  I do find it easier to lay on my non-surgery side than my surgery side though if I get the pillows right, I can lay like that for a little bit.

No TEs - sticking with the flat side for now.  Recon would pretty much require doing some work on my good boob to correct the age sagging and I didn't want to have extra surgery right now.

luckykitkat09

taismommy -
i know how you feel lol i usually sleep on my left side, i finally been able to do that now recently. i try to on my right to see if i can and sometimes it stings or is just plain sore to do so..when i came home from my bmx i slept somewhat straight with 4 different pillows lifting up my back and neck haha but it made my neck hurt. don't you have muscle relaxants? those help a lot!!!!

jinkala -
maybe its leftover fat? i wouldn't be concerned if your doctors aren't (maybe that's just me)..

my right boob right below the collarbone for some reason looks and feels hollow underneath (hard to explain)..i might have to post a pic to explain it..my PS today said he might have to use a skin graft or something else if the expanders doesn't expand that area..since I'm so small I don't have enough skin graft to take from...sighs..

curveball

@taismommy,

I've been able to sleep on my side since I think two weeks or so after surgery. The cancer was on the side I like to sleep on. My surgeon said it was OK to sleep on that side as soon as it didn't hurt. 

I think I may have a "third foob", kind of a bump of tissue at the edge of my breast/under my arm. It touches my arm where my arm doesn't expect anything to be touching it, which feels weird. I thought it was swelling from the surgery and asked my surgeon's nurse how long it would take to go down. The nurse said it was not swelling, it is the skin going slack because my boob is no longer there to pull it snug and smooth. If your TEs aren't yet as large as your natural breasts were, maybe you also have some loose skin in that area.

I also still have some scar tissue in my armpit that tends to get somewhat puffy during the day as I use my arm. Your surgery was both more recent and more extensive than mine, so you might have something like that too. Nurse says it will soften up and stretch out with time and doing my exercises.

emilybrooke

taismommy - I had my surgery on 6/20 and just started sleeping on my left side (the less effected side) last week. I still cannot sleep on my right side because it gets sore. That being said, I cannot sleep on the left side for more than an hour w/o having to switch to my back. The nurse at the PS office rec. that I gently hug a soft pillow and roll to the left side. This definitely provided more comfort. I also invested in a few new pillows because after the first chemo treatment last week I could not get comfy in my own bed =( I also bought one of those knee pillows for when I sleep on my side.

The rock hard TEs come and go for me. I really feel like for me it depends on the weather. When I move from the air conditioning to the humidity the TEs act up a little, which the PS said would happen. As far as the third boob, I'm not sure about that. I feel like my right side is still a little swollen in comparison to the left, almost like I have more tissue between the boob and inside of my right arm. My husband swears it's not swollen so I guess it's just a nerve sensation I am experiencing.

loriio

I had a rough night of tossing and turning and wound up sleeping in a weird position on my right side. It was uncomfortable but I was so tired I just finally fell asleep that way. This morning my right TE has a weird new bump in the cleavage area. I guess the way I was sleeping just shifted some of the saline in a new little pocket. I'm having fills again on Monday so I'm hoping the weird bump goes away but I'm sure it's more likely new weird bumps will show up. Isn't this a wacky thing our bodies going thru? I don't have the "third boob" thing but my boobs still have corners or points on the outside. My PS says they'll be there until my exchange surgery. My sense of humor has been waning this past week. Before I started this process I could at least muster a smile when I got the "at least you get a new set of perky boobs out of this" comment. Now, I'm not so sure. Sorry. I'm a bit of a downer this morning.

taismommy

Jinkala- I removed both breast to lower my recurrence risk, so now both will be FOOBS, smh

kathyhong-  I have flexeril but i was trying to ween myself off, guess being strong will have to wait a few more weeks.

curveball- Thanks for the explaination being i was a full C prior (no where near it now)to my BMX this makes since to me

emilybrooke- I thought it was just me thinking the weather and my TEs are in cahoots to drive me nuts!

loriioo- I hope this feeling passes, I can relate. When I get the "Perky boob" comment im screaming in my head SHUT UP!! You have no idea!. That usually makes me feel better. lol

luckykitkat09

Taismommy

Don't feel bad I tried to stop taking them but it came too unbearable now that I have 300ccs now and it's a pain in the back and chest

taismommy

Kathyhong- i started the muscle relaxers again, helps a TON!