February 2012 MX

Bern,  How cool!  just know when you look at it that I and others are thinking of you warmly and with much affection.

 I got the call back.  I'm in the clinical study.  Life's a blurr. Have to book a hotel etc. in the big city and figure out the shuttles etc.  My first pas bombed as there's medical convention in the area and the hotels are booked.  Here we go.....

mma59 I am so glad that from our measly little sampling size from February (what about 25-30 of us?0 two of us are in clinical research studies.  You and I can be guinea pig buddies.  Squeak, squeak 

Hi Ladies,

Deborah,

Congrats on the clinical study!!!  Sounds like life is going to be crazy again for a while.

Galsal,

I hope you get your surgery datw scheduled soon!!!

I went to PS today and was cleared to start back to work, so tomorrow is the first day back...

I asked PS about large area of fatty necrosis and if he could remove it.  He said if he does it will leave a large concave area.  He tried injecting something into it to see if it will break it up some.  I sure hope it works, cuz I hape the big hard lump!!!  I go back in about 7 weeks and I guess at that time set up round 2 to create nipples, clean up existing issues and then tatooing.  Will be interesting to find out what all this will entail.

I hope everyone else is doing well!!!

Carolyn  

Hi Ladies,

I am so excited and very touched.  I emailed a local tatoo artist to se if he had any pics of the 3D nipple tatooing and to get a ballpark idea of the cost so I can save to have it done.  He emailed me back today and told me it would take a few months to get an appointment, but he would be happy to do at no charge!!!  I got teary eyed.  It's strange the things that get to us, I guess it was just the random act of kindness

I hope you're all having wonderful days!!!

Carolyn

That is great Carolyn!!!!!!!!! I have been searching also but I think they also do this at the breast center where I am going, I hope so. But that is AWESOME!!!

Good Morning all

So many of you are going thru much more difficult issues, I have been fortunate to not have had any set backs.  (Knock on wood)   I hope that the days get better for all of you.  We've all come along way - what a great team of survivors.   

Went to PS Monday - said that I am well over half way with fills.  He put 60 ccs in (all others have been 70 ccs) every 2 weeks.  Is that common to decrease amount at the end of fills? 

Have tentative exchange surgery scheduled for Jul 5.  Who would think that we'd look forward to surgery? 

Good AM Fab Feb Femmes,

My first evening back to work is officially completed!!!  It wasn't to bad.  I only had 2 patients that were pretty simple.  The hardest thisnk was remembering all the codes and passwords, and getting back into my routine, computerized charting etc.  It's amazing how quickly we forget, and how quickly it comes back once reminded.  I work 2 more 4 hour shift Thursday and Friday, then 3 8 hour midnights next week, then back to my 12 hour midnights the following week...arrrgg!  I hope I can swing it.

Deborah,

I hope all went well with the scan, sounds like you were sufficiently prepared.  Makes me wonder, if it's called fasting, was does it take sooo long

Bern,

I was told that when the tatooing is done @ the MD's office it fades quickly because they have to use medical grade ink. I don't know if this would affect you, just wanted to share in case it does. My PS office, does do it, but the nurse pulled me aside after the PS left and told me she thought I might prefer to have it done by a tatoo artist. Anyhoo, I guess I'll find out this summer sometime!!

Janice,

That's exciting!! It's always nice to feel like we're getting finished and as back to normal as possible!!!

Thanks to all for the kind words!!

Have a good one,

Carolyn 

Hi Beth!!!!!....we miss you when you're gone.  Cancer DOES suck!!!  Prayers for you, Chicka!!

Deborah -- can't wait to hear about your adventures.

Carolyn -- I'm sure you'll do great at work.

Bern -- Your tattoos rock!!

Janice -- I'm scheduled for the exchange on May 21.  I'm already a little nervous.  Such a silly girl sometimes.

Wow - that cancermath thing is pretty scary. It says my tumor size and node amount exceed the amounts they have for comparing...lol... but it says if i do chemo and tamoflaxin i will live 6683 days longer.

Hello my Fellow Fab Febbies!

It's way past my bedtime.  Debbie Os and I are trying to meet this Saturday!  Among other things, we discovered that our our kids attend the same university!  

 We will be sure to update  everyone if we can pull off this rendezvous. We think we have it dialed in. I'm ecstatic to met her! It'll be an adventure aswe both have to drive a long distance to meet halfway. DebbieOs will get to see me in my "before" state.  Pre AIs or anything else.  

The clinical trial was very interesting. Part one was at one location and Part 2 was a shuttle ride to another part of the university campus.  This is in a big city.  

1.  First they drew 3 vials of blood.  Then I had to take about 8 different "tests" given by a really great recent college grad. The testing also had an interrogative portion about how I was feeling.  Like is my tail happy wagging or butt dragging since the big C at various time intervals. All the questions were relevant.  Mood, energy, etc. Nothing traumatic. 

2. Next, I had various puzzles that I can see would be good measures of foggy brain.  Everything was timed.  Nothing intelligence based or anything like that.  Example.  A series of red, green and blue colored squares shown on a glossy page. A timer goes off and then you name however many you can in an interval or how long of an interval does it take to name all of the colored squares.  Next stage is same deal only instead of the colored squares, one is reading the words red, blue, green etc. Although these are in rows and columns, there is no pattern.  Next, one has to read the words but the letters are colored and they are often NOT in the color of the word.  For example the word red would be r-e-d but in the color blue. Then they introduce the next level where sometimes you are to only say the color regardless of what the letters say or if the word is enclosed, then you may read that one regardless of the color it is written in etc. Again, you are timed.

3.  Word lists of items and recalling them.  Numerous lists and changing them up etc. Testing your recall and how long it takes you.

4. Visual representations of blocks hooked together to form various shapes.  Then that shape is shown rotated and you have to identify the same shape only it doesn't look like its original form because its from a different angle and you can't see each block or unit very well.  

5. Connecting dots with various instructions etc.  all timed.

Part two was across town.  The PET scan of my brain. Happy to report that it is not loud like the "jet engine" of an MRI.  Headphones were not necessary.  It's almost quiet.  However, one has to lay perfectly still even though only the head is being scanned.  The technician said that there are no arm rests and so he proceeded to wrap my arms in some giant velcro deal to support them.  Even on Diazapam I almost freaked out.  I felt like I was being placed in a straight jacket. I said NO, get it off me! I just kept my arms on my chest and laced my fingers together.  

Prior to my MX (as in less than an hour) I had radioactive fluid injected into me.  I expected this to be the same. But nooooo.  They put a catheter in my arm (the one that doesn't have my medical alert bracelet that says no BP or needles right arm- glad I bought that thing- everyone goes for the right arm).  Then they inject some sugary liquid and you have to wait. Then they take this nasty looking stainless steel  industrial chubby syringe with a valve on it (that syringe kinda freaked me out) and you watch the radioactive clear fluid go into your vein.  They open and close the valve a few times to get it into you.  It feels cold. .  It was obvious whatever the heck I was being injected with was "don't try this at home". Then you wait 45 mins. Next, it's into the tube. I was so blitzed by then due to the Diazapam that I was relaxed and could handle the scan.

I met three wonderful women in the line to get into the PET scan. They were there for their various cancer tretments.  I swear women cancer patients survivors are awesome!  We all are friendly and talk.  I'll bet men wouldn't speak of anything about their cancers if they were waiting for their turn in the dressing room.  The most amazing woman I met in the dressing room looked great.  She had had melanoma, then breast cancer etc. She had survived melanoma for over 5 years!  That is unheard of!  She said she had a certain gene and they were able to use that information to give her a drug.  She meant the world to me as I had had melanoma insitu and my worst fear is melanoma.  Typically if you gets mets from it you're dead in 4 mos. to a year if you're lucky. The other two ladies had lymphomas were discussing and helping each other out as to what types they had and treatments etc.  They were uplifting.   

 mma59 sounds like you won't know if you are placebo or not.  I'm literally having my head examined!  Oh brother!

Restful sleep to all. 

Deborah

Ditto to what Nel said, Deb!  Thanks for doing this!  And, can't wait to meet you tomorrow!

Hi Ladies,

In the middle of my first midnight shift and all is well thus far...

Beth and Nel,

I hope the chemo stays tolerable and you both continue to do well.

Bern,

I'm glad you're feeling well after surgery!!!  Keep up the good work.

Deborah and Debbie,

We'll have to hear the details of your meet.  I hope all went smoothly and you had a great time!!!

I hope everyone has a great week,

Carolyn

Hi Cajmi/Carolyn and Ladies,

Deborah (Deborah2012) and I had a great time meeting with each other!  We met at the Promenade in Santa Monica and just talked and talked and talked.  She is absolutely a lovely woman and, now, dear friend.  In addition to talking about our kids, as we mothers always do, we compared all of our cancer notes and followups and she even brought the tape of her 2nd opinion with an onc in San Francisco.  It was great! 

Now, for the funny part.....Deb and I wanted to see each other's reconstruction, since I had a tissue sparing (including areola sparing) MX with an inflatable implant (not a TE), and she had a TE (soon to be replaced by a regular implant).  So...picture this...two grown women, looking for a large bathroom where we could "share," but trying not to look like a couple of pervs    ....very difficult...waited for the large disabled bathroom stall at PF Changs, where, it seemed, that everyone in Santa Monica decided to use at that time of day, so we scrapped the "sharing" there.  Then, we go to Starbucks, where, earlier in the day when I arrived there, there was no line.  Just our luck.....the line was now about 10 people long...as it becomes our turn to use one of the two large stalls, Deborah yells out, "I've got a wardrobe malfunction that my friend needs to help me with!"  Uh huh...yea...we both look like a couple of pervs anyway ...  Anyhow, finally, mission accomplished, and now we both have a better understanding of the differences in reconstruction.  In a nutshell, I think Deborah has the advantage of ultimately having a perkier implant, but I have the advantage of not having to have a 2nd surgery for an implant.

BTW, my new pix shows the two of us on the Promenade on Saturday.

Have a great week everyone!

Debbie

Hi Ladies,

Glad to heard the Debbies had a great visit!!!!

Dixiemine30...the smoking isn't going well, still not ready but I know it's coming. I started Weight Watchers and I have been doing pretty good. I wanted to get a jump on the possible weight gain. Seems like everything has gone by so fast and now I am down to the treatment. I see my MO tomorrow to find out what is in my future. Funny, but this is the scariest part for me. I don't know what to expect. I am starting to feel like my myself again and now treatment, uggggh! Wondering about the p53 test also has me a little jumpy. I am still taking the Valium (from BS) but had my doc change the dosage to 2mg (from 5mg) then I will start cutting that in half. Even though it has been helping my other "back" issues, I am sure I am going to have to give it up when I start treatment. This is the only thing I am on, not even any pain meds. Oh well, I have been rambling...must be nervous...

I hope everyone is doing better today then yesterday.

I will check in tomorrow after I see my MO, she already has my p53 results maybe she can give me some info before Wed.

Sleep well!!!!!!!!!!!

Good evening to all the Fab Febbie Females!

 Do you know what a terrific sister you have in Ms. DebbieOs?  Well, I'm here to tell you she's a walking marvel!  I just adore her in person every bit as much as on the boards- and you know that might not always happen! BTW, she  has another advantage with her hybrid implant.  What an innocuous scar with nipple sparing surgery! It's "like" (OK Deb, as our kids would say) almost invisible!

I had found a card for preggies where the lady on the cover of  the card says "Girl, your boobs look awesome"! On the inside it says something like and I'm interested in your baby too, but "Dang, those boobs"!  I supplanted "baby" with "I'm interested in your  "hormone therapy", too"!  I hope I'm not embarrassing her.  She is such a sweetheart.  She is in a "chill" phase and it was just what I needed. Just so happened with where I am at with impending final reconstruciton, waiting for Mammoprint results, need to be BRAC tested and onc appt., things are revving up for  me.

DebbieOs is a " way cool"!  FFF sister and truly my friend, She gave me breast cancer bangle bracelets with pink blling and little pink ribboney dealy-womps, with words on the bracelets! 

Naturally, I gave her customized "foob" lingeries with special garment tape.  (Go to Target and get the special tape available only in the lingerie dept.).  Have fun with your nippleless or whatever version of breast you have chosen to either reconstruct or NOT. Reclaim the foob, boob, whatever ladies!  Scalloped laces in every color with garment tape looksterrific with lingerie.  As one our FFF said (cajmi??? Hi honey!) said we could do seasonal decorations on our foobs.  We need to celebrate and rock this stuff.  It's our blasted "badges"!

Okay, my strawberry blondeness (with the help of haircolr) is coming out.  I am planning on going AWOL!  You there Galsal???

After speaking with my PS this afternoon, I have decided that I am NOT going to begin AIs until after my surgery.  I will have anesthesia, pain pills, anti-nausea meds, and a relaxer in my system.  The last thing I need is to introduce 7 days pre-surgery is AIs to stave off a potential BC recurrence years down the road by what having delayed 7-10 days?  Hello?  Has anyone heard of triage?  A surgical procedure under general anesthesia should take precedence over preventing a recurrence of BC by a matter of one to two weeks.  My final reconstruction surgery is April 30th.  May 3rd would be 90 days post my MX. This will make sense and may help others after my local onc appt.tommorow.

Cherrios to DebbieOs!  Thank you for being my BC buddy and friend in person.  Can't wait until we rendevous again at our kids university (amazing 3 out of 4 go to the same institution)! and/or in the same city in So. Cal where both of our girls will be working this summer based on their different courses of study but at the same university.  Our intersections continue to amaze me!  You are a treasure!

Deborah2012

Deborah, present and accounted for!  My own haircolor needs revamped.