SEPTEMBER 2009 RADS

Titan

kawee..do you really need a h1n1 shot now? Actually I think it was a bit over the top for the media but you do what you want..I was concerned about having them because I thought they rushed them through...also..I don't work around little kids and am not pregnant so I didn't worry about it....my sweet little 2 year old niece got it right after she got the vaccine...I was told to stay away from her for 28 days but I didn't...and I didn't get it....

kawee

Titan, I don't know.  Seems like a person should wait until it starts going around again.  My Dr. says they expect another round of it.  I've got to think about it.  Sometimes I think they just want to get rid of all the vaccine they've got left over.  Who knows?

Well at the end of the day on day 1 of tamox, my eyes are really dry (they already are anyway), but really dry now.  Plus I'm a little nauseas.  Other than that I don't feel much.  They only started me on 10 mg for a couple of weeks because of the Lupus.  He wants my body to adjust before I go to the higher dose.  We are all a little sceptical of being able to take it, but we'll see.  With Lupus, people are sensitive to drugs.  I hope it will be okay. 

peg119

About the H1N1 vaccine.  I work in public health and do believe we have not seen the end of H1N1Remember it first hit the states last year around April.  I am encouraging all of the families on my program to get the vaccine.  Even with the vaccine you may still get the flu but it would be a milder case.  Each person definitely has to make up there own mind about this issue though.

BetsyBuzz

Kawee,

I think Peg is right on..so the virus isn't here right now...it doesn't mean it's not going to resurface with a new mutation. Sort of scary thought, I know. But in my mind, I think why not get the antibodies sooner rather than later. You especially with your compromised immune system.

I finally called my drs office today. I still don't know anything for sure because the drs assistant had trouble reading the report. But basically it sounds like I don't have an infection. Just major collateral damage from rads. Fibrosis is definitely part of the diagnosis and some other long words that neither she nor I could understand or could pronounce. I said if it's not an infection then why do the antibiotics reduce the swelling? She didn't know. So I will wait for the written report.

In our conversation I asked about a follow up appointment, she said since you are a "different patient" you can just call anytime and we will squeeze you in. I said...I don't want to be classified as a "different patient"! She laughed and said she didn't mean it like that...but if you have problem..or another flare up..don't wait, call. I should have said I'll see you in a couple of weeks then...but I held off. That was the pessimist in me reacting. So again...the saga continues.....Hopefully the lymphedema specialist will help stop this endless loop.

Mary - I'm ok jogging a little while then walking. I just know running the entire 5K will be too much for me. So bottom line...I'm in. I need to start my training now. Sounds like a good goal. You can count me in as part of the "Chest Nuts".

kawee

Betsy, since you are a "different patient", why not get squeezed in on Monday, then you can talk to the Dr. and ask all the questions?  Sounds like a plan.

Titan

Betsy..hey if being different gets you in earlier..go for it..why not...I think we are special...last August I had a mammo on my good breast..supposedly routine...any way..they said..we will call you in like a week!  I was like wtf...I'm special..I have cancer and I have to wait?  They said it was just a "routine" mammo..I told them that NOTHING is routine for me anymore..dang it...I did have to wait despite my whining..that is when I found out about the calicifications..however, the bs got me in right away for a biopsy, reassured me after it was done that it was most likely benign and to enjoy the labor day weekend...which I did...HE at least gave me privileged treatment.

I think as bc patients/ex patients..whatever..we DO have the right to push the envelope a little harder...I know that I whine and whine and I get things done faster,,,,and I don't feel bad about it at all...having BC has it's privileges after all...choke, choke.

BetsyBuzz

Just checking in. Happy Easter everyone!!!

Monday's my first PT appt. It should be interesting, I will keep you posted.

Betsy

peg119

Hope everyone has a nice weekend and a HAPPY EASTER.

kawee

Hi, all.  I get my first mammogram today.  I think it's gonna hurt like you know what.  Plus, I'm really nervous.

peg119

Good luck Kawee with the mammo.  I get mine in a couple of weeks.  I had one between my two lumpectomies which wasn't much fun.  Both of my lumpectomies were needle guided so they included mammograms as well.

kawee

Well, the Rad Dr. said there's nothing new in there.  He showed me the mammo and all the scar tissue.  But said everything looks okay and that this mammo will be my new baseline.

By the way, no pain, whatsoever.  Was I surprised.

Whew, glad that's over.

BetsyBuzz

Just got back from my first PT appointment. DX is truncal lymphedema and RIF (radiation induced fibrosis). The lymphedema specialist measured both sides and gave me a few exercises. Thank goodness no arm lymphedema. She said my shoulder is involved and my thoracic spine. Next appt. she will begin massaging the fluid out gently and show me how to do it and also work to loosen up my spine. She said to stretch but not to the point of pain. I also have to start wearing a compression bra and a compression pad at night. I'm sure it's going to be lovely...my poor dh. It sounds like body armor.

AmyIsStrong

Finished Herceptin today! Kind of can't believe it. What a year this has been. And it is so comforting to come here and know you ladies TRULY understand.

For the first and ONLY time, the port gave a little bit of trouble, but they finally got it working. The nurse cried in my arms when we said goodbye. I promised to come back and see her. there is a stage IV lady there that is on my same schedule and we have sat together every 3 weeks. She will be on Herceptin forever. So we didnt' make too big a fuss about it being my last time in front of her, but rather out in the hall, to spare her feelings. It was a sobering reminder of how serious this all is.

BUT what a happy day for me! Port comes out 4/26 - can't wait! I feel very emotional today - not really happy or sad, more just emotional and relieved.

I would never have believed I could do this - BUT I DID. And I did it mostly with courage.

Thank you all for being there.

peg119

Congrats Amy on being done with the Herceptin.

kawee

Amy - Horray!!!!  You've done all the hard stuff.  Congratulations!  I don't blame you on the emotional part.  I cried at the end of my bc treatments too.  Heal well, my friend!

Betsy - Did they say how long all this will last? 

BetsyBuzz

Amy - The procedure to take the port out was no big deal so no worries ok!  Only thing is my scar is way worst for my port than my lumpectomy, I think it's because rads burnt the surgery scar right off my body. I bet it was emotional..especially since you know the stage IV women won't ever get to feel the joy you felt at being finished. But....bottom line you are done!!! Congrats! Let's just pray that none of us ever have to deal with this ever again!

Kawee - I'm afraid to ask how long it will last. I think it's forever...maybe I will have courage  to ask on Monday.

Mtg- are you still lurking? I need to post a pic of this new contraption I have to wear at night. It would be a great cake! My dh thinks it looks like an alien boob. I think I started out talking about being slimed by aliens on this forum...funny it's come full circle.  

MTG

Hi Ladies.

 Haven't been around much lately - am down in Florida exercising my ass off or at least exercising hours a day and hoping the ass part shrinks significantly. I put on weight this last year and since they've just put me into chemical menopause (so I coould switch from Tamoxifen to Arimidex) , I'm terrified that the weight will be here permanently. Progress is slow but at least I'm moving in the right direction.

Betsy - I'm so glad you finally got a diagnosis.  SInce the antibiotics did work while you were taking them, did your doctor confirm that either the lyphedema or RIF does respond to antibiotics ? Just want to make certain that  they've accounted for everything. Now, as for the new "body armor", any chance your husband has fantasies of sleeping with cop or maybe a sexy alien ? ~smile~

I hope everyone is well. 

ccbaby

Betsy...I want to see a pic of this alien boob you are talking about! lol

echosalvaje

CC...you have so much hair!!! Wow, mine's coming in so slowly and much curlier than before....I look like one of those little old ladies that just got a perm. The only thing missing is those part lines from the rods showing my pinky scalp, LOL.

BetsyBuzz

Wow...Christy look at those locks! You look adorable.

Echo...your hair sounds like mine. The little ole lady bad perm look has been hard for me to deal with but at least I'm seeing bangs now. An the curls are loosening up a bit with a little weight on them. But still no where close to Christy's length.

Mtg- I asked about the infection they still think I had one since the antibiotics brought the swelling down but now it's just LE & RIF. One down two to go!

So here's my boob hugger pic. I have to stuff this under a tight bra and wear it over night. In the morning my boob looks like a waffle. The good thing...even though it looks like hell...it's working. My bc boob is smaller than the healthy one for the first time in six months. The PT felt wonderful. My therapist has magic fingers...I was so worried it was going to hurt but it felt great!

lollys

Hi all --just thought I would drop by to see what is going on--it is a year ago today I had my first chemo--sooo weird--my hair is the same --looks like a grandma perm(oh I am a grandma!!) anyhow use a straight iron sometimes when it gets too betty boop looking--Betsy glad to hear you are doing better--not much else--just thought I would say hi--Laura

kawee

Me, too.  Just wanted to say also.  We must all be doing well, finally.  I'm happy for all of us, although I do miss the chit chat. 

 Stay well, everyone!! 

Karen

ccbaby

Thanks...Now that Herceptin is over, I think my hair is growing a little faster. I still can't wait for it to be at least to my shoulders!

Titan

Hey everyone..sounds like you guys are doing well!!  And its about time!

My dh and I were ROBBED this week so I have been playing detective because here in Mayberry, the cops don't move very fast! 

 They didn't get much...my laptop and jewelery box...and some cash...well alot of cash which totally sucks because insurance will only give you $200.00 for any amount of cash.   MY DH is one of those "saver" type people...I did even know he had that much...well...did have that much..

Last spring it was cancer and chemo, this spring it is a robbery!  I has hoping to be a little bored by now...guess not!

echosalvaje

Wow, robbery is in the air! I had a client yesterday telling me of a robbery at her house this week. They got away with guns, electronics, passports, jewelery, credit cards etc. This woman is an elementary school principal and ironically one of the students mothers who heard about the robbery is a tattoo artist and had a customer bragging about this heist while getting tattooed. She promptly called the police and they caught the guys.

Titan

Hey /echo...I'm hoping that happens to us! They are interviewing two guys tomorrow...I hope it is them...I have been playing detective myself because our county has budget cuts..! Too much to go into here,,,,,but since this is a rad thread,,you know..if they did do it..I wouldn't mind if they cut their breasts off, gave then a 100 hours of AC and then gave them a few zaps of rads!

BetsyBuzz

Titan- Wow...remind me not to get on your bad side!

Titan

Betsy...I know I know..I think you are only kidding but sometimes I honestly wonder what kind of person I may be turning into.....with breast cancer and now this....trying to remain stress free is not easy....but no one said life would be easy but honestly I thought I would be one of the lucky ones...have a good life and die at 90 in my sleep....how long do you go on thinking that things will get better? It seems that sometimes..when things are going good..I keep thinking..something bad will happen because things are going good.....how much can a person take?? really?

Titan

My SIL said that breast cancer is a violation of your body and robbery is a violation of your home and your security... I am not going to give up on either of the above but now I can certainly understand why people do give up.....they are just too tired of fighting.

kawee

Oh, man.  We just got back from a 10 day motorhome trip.  FIRST -  we had trouble (lots) with the motorhome.  My husband was on the roof of it and really cut himself. We had to take it in to get it fixed.  SECOND - my husband's cheek started to swell,  We went to a local Dr. where we were, he said he had a stone and to suck on lemon candies and it would wash itself out.  Okay, we did that, then the pain started, horrible pain, poor guy.  We took him to a dentist in another town where we were, they took x-rays, etc. found nothing.  Later that night he was in agony we went to the emergency room.  After a pain shot, two antibiodic shots and a ct scan, they said his salivary gland was infected.  We were there til 2:30 am.  THIRD - It rained, snowed, was so windy we could hardly drive the stupid thing and only had about 3 good days of weather.  FOURTH - I was standing in the motorhome and my husband pulled forward w/o telling me and I flew forward and landed flat on my stomach.  I pulled things that haven't been stretched in years.  I'm so sore.

MORAL - We hate that stupid thing, and we're putting it up for sale.  WAY TOO MUCH STRESS!!!!!!!  One night I just sat down and cried and cried, then my husband started in with me.  Feels soooooooooooooooo good to be home.