11 days

that is how long I have until surgery.  I am on vacation and it is the best thing I could have done.  I am sure if I were at home I would be much more stressed out.  For now the only thing bothering me is that I am not 'preparing' for surgery by getting things ready around the house, finding shirts that will conceal my odd look (I still don't know what the hell to buy!)  and whatever else I feel like i need to do to get ready.  Oh well- vacation is worth it :)

BRAC Analysis

My BRCA1 and BRCA2 tests came back negative!  This is great news.  It means that I don't have the most common 'breast cancer genes' which really means I do have those genes (as does everyone) and that they are not broken!  Yeah!  That means that for now I get to only have a single mastectomy and I do not need to have my ovaries removed.  They are still doing other genetic tests that may have other implications, but for now, things are good- the best part of this, is that a high chance for breast cancer is NOT something I will pass down to my kids.

Ouch!

One of my many many appointments today was to get blood drawn.  Look what they did to me!!! OUCH! And believe it or not, it wasn't from fishing around with the needle (though a good amount of that was done) It was from the tape that they covered it up with, instead of a bandaid.  May as well have been duct tape!  You would think a lab would know better than to use high octane tape on people's skin!

Barbie boobs

I woke up at 4:30 this morning and could not go to sleep.  Why? Because I am scared of barbie boobs.  Sure, when you first look at them they seem nice and perky.  But if you touch it, it is hard, it doesn't go anywhere. And it doesn't have a freaking nipple! Ahhhhh!  Then, notice her laying down.  They don't and lay flat with the rest of her body, in fact she cant even lay down all the way because of her damn boobs.  This is my future! 
Yes, implants can look very natural these days, but not so much when it is reconstructive implants.  Those suckers are behind a wall of muscle, not just stuck into the skin between the fat.
So- yes, I have been up since 4:30 this morning.  Thinking in a panic that I need to call the plastic surgeon and cancel his services on surgery day, that really I should just get a lumpectomy- higher risk be damned!
I finally talked myself down, but still....this is just not something I ever wanted for myself.  not something that fits into my life, and not something that anyone should ever have to do!
Stupid barbie.

Aphinity Trial

Aha!  I looked and looked last night trying to find information on the Affinity trials....It is spelled Aphinity ;)
Here is some more information on it.
http://cancerhelp.cancerresearchuk.org/trials/a-trial-looking-trastuzumab-pertuzumab-for-HER2-positive-breast-cancer-APHINITY
I am really looking forward to being a part of it!

oncologist appt (aka the longest.appointment.ever.)

Got to my 3:30 appointment with Dr. Young at about 3:15.  That is usually plenty of time to fill out paperwork.  Unless it is cancer paperwork.  All sorts of genetic questions....which probably wouldn't have annoyed me if I didn't already fill out a huge amount of paperwork for the genetic counselor! ugh!  The thing is, these people DO all talk to each other and share paperwork....no reason for all that nonsense.
Anyway- they call me back after a few minutes, and I get to go into the library. There is one little table and a few chairs.  I sit down and speak with the cancer naviagator.  She gives me a huge leather briefcase to keep all my info in, and a book on good recipes for cancer- healthy eatings as well as foods to help with some of the chemo side effects.  She told me that if I ever need anything that is in that room it is all free for the taking.  There are some decent wigs in there, as well as hats, pillows, and a lot of books!  sweet!
Next, we take a mini tour- there are radiology offices there, a lab, and a pharmacy.  They also have a gym somewhere (after treatment is complete you get your own personal trainer!) and massages and counseling, and lots of other things are all free.   After showing me some of these things, I get led to the Dr's waiting room.  I meet Fred.  Fred is a woman that is really named Yvonne or Yvette...apparently there are too many of those working there so they renamed a few of them- LOL!  I met someone else too...just more people to answer different questions for.  Apparently they are people I will become quite aquainted with over the next year!
Dr. Young finally came in- she is middle aged with feathered hair that is a bit goofy but she is very nice.  She was wearing a hawaiian print sundress and birkenstocks- very laid back!  That is not how she was about cancer though- not at all.  She said my cancer is right on the border of stage 1, but it is very fast growing so she thinks it will be closer to a stage 2 by the time it is removed.  She still felt no swollen lymph nodes (yeah!).  She told me that I would be on the TCH combo for chemo- that is Taxotere, Carboplatin. and  Herceptin.  There will be 6 treatments, spaced 3 weeks apart, which totals 18 weeks.  It is mandatory that I get a port-a-cath, because apparently if Taxotere gets on my skin...it is something a plastic surgeon would have to fix.  Nice!  That is exactly what I want running through my veins!  I bet I will feel great! LOL!
Here is the exciting part- so far, as long as the cancer has not spread to another part of my body, I qualify for a study.  I think she called it 'The Affinity Study'.  The placebo group receives the standard TCH chemo.  The test group receives TCH plus a 4th drug targeted to HER2 receptors in a different way than Herceptin.  It requires some extra bone scans and other tests, and a sample of my tumor will be sent to Italy to be tested there, where they are doing the study.  Exciting, right!  It isn't a new drug, just a new combo- so it shouldn't be too bad, I figure it really should only be better.  I think it does give a slightly higher chance for heart 'issues' but any chemo related stuff does that- they will keep an eye on things, so I am not worried.
When she was finished explaining everything she gave me a big hug, and walked me out to the parking lot- we were the last 2 people in that place.  I didn't leave there till 6:30!!! Gosh!
I am sure that I learned alot more today, but right now my brain is fried. 
good night friends!

Plastic Surgeon appt.

I had my plastic surgery consultation this morning.  The office was SO nice, it felt like I was at a spa.  I had looked the doctor up online and thought he maybe looked a little creepy, but he didn't look like the picture much at all, in fact- he reminded me MUCH of Dr. Sloan on Greys Anatomy (Dr. McSteamy) he looked AND talked like him- it was weird!  He told me my boobs have great architecture! LOLOLOL!  He does implants as well as the TRAM- where they use your own body tissue from your stomach to build a new boob, but it is a huge cut and he said it takes about 3 months to recover fully from that.  While I really, really like the idea of natural, I have enough on my plate right now, and dont want to make things harder for myself if I don't have to.  So- we chose to go with implants.  First, during the mastectomy he will place a tissue expander behind my muscle and will fill it slowly over a few months until it is the size we want it to be, then we wait for all my cancer treatment to finish and after that we do the exchange- where i get my implant.  It will not feel like a normal squishy boob because the implant will be behind a layer of muscle, but under clothing it will look normal.  For normal implants, the doctor uses saline, but for reconstruction, he uses silicone-apparently it feels softer so it helps it to look and feel a bit more natural.

for some reason this picture will NOT sit sideways... anyhow- the top is the implant which is what I will get in the end- the bottom is the tissue expander.  It is empty to start with and it is hard and kind of scratchy :-/, but basically it is just a really strong empty water balloon.  They stick a needle through the skin, into the little bubble to fill it every couple of weeks.

Oh- and YES, you can still sleep on your stomach with these things in- yes, I had to ask!

and as a little present to myself, since I will already have a plastic surgeon and all- I am going to get my right ear repaired so that I can wear earrings.  I figure that will look nice with no hair/short hair!  I haven't worn earrings in about 20 years!  They are pierced but the right one is torn so if I put earrings in it is terribly lopsided.

Getting ready for all the appointments this week!

I have an appointment with every single person on my team this week! All downtown, and different days or times.  I will be driving a lot this week!  Tomorrow is the plastic surgeon and the oncologist, then Thursday is with the surgeon again.  After this week, I will have a pretty good idea of what the rest of this year will look like for me.  I am very excited to meet the plastic surgeon, as well as the oncologist.  I am sort of getting nervous again though because I am pretty sure my lump has grown.  The swelling from the biopsy seems to have gone away, but the lump seems bigger than it did before.  ugh.  I guess as long as it is just growing and not spreading things will still be okay.

Wig Party!!

 

This was one of my favorites!  WEIRD because I have never had hair this short- and would never dream of cutting my hair this short- but this was pretty cute!

 

   

 This one was one of the front runners also- I like that the back flips out on the ends

                                               

 

 

 

 This is my friend Sara- She had fun trying on wigs too!  Kim didn't try as many on- I think she was busy finding good ones for me :)     I am just so very happy that I have wonderful friends that are willing to come and spend their day with me.  I have now decided that 'Wig parties' should actually be a *thing* that people do!  Kind of like how little kids play dress up, but this is for grown ups.  Add a little wine or liquor, maybe a few fancy dresses to try on, and all those wigs!  F.U.N.

My insurance actually will reimburse me up to $500 for wigs.  From the many I have seen online, I expected this to go toward 1 human hair wig.  The lady at the wig shop talked me out of human hair though because synthetic are much easier to care for.  Oh- and they are SO MUCH cheaper! Holy cow- I didn't see a single wig that was even $200!  I am thinking I will be able to buy 4 or 5 of these suckers and be a new person each day! LOL!  Realistically, I am not even sure I will like wearing a wig- they ARE itchy, but I am thinking that even after my hair grows back it, it would be awesome to have a few of these around!

genetic testing

Well, I went in for my genetic testing today.  I expected the appointment with the genetic counselor to be quite boring but it was fun!  I sort of feel like I learned enough to receive some college credit for a science class or something... ;)
Here is some of what I learned- everyone HAS the BRCA gene markers- but some people receive broken ones- THAT is when you get cancer- or at least one of the times that makes it possible.  If my test comes back for having faulty BRCA 1 or 2, then they know that I have a significantly higher risk of getting a new cancer in my other breast, as well as a higher chance of ovarian cancer.  Beyond that- there are about 20 other breast cancer gene markers- these can let you know that you are at a higher risk of breast cancer + whatever other type aka: brain, stomach, bladder, colon, etc.  They can get so much information from those tiny little gene markers!  If the test results come back fine for BRCA, then they will enroll me in a study to test many other markers and it will be free.  If the test for BRCA  comes back positive for having the mutation or break down, then I will need to have my ovaries removed in the next 2 years. Yeah- no boobs, chemo, AND menopause!  Please, please, PLEASE let me pass this test!!!!!
While I was there, I also asked about getting a complete dna test- just for the heck of it.  Not that I plan on doing this right now, but I don't know anything about my father and it would be cool to find something/anything out.  Apparently it would cost about $10,000.  ohhhh- yea, I will wait on that!  She said that in about 10 years she expects it to be much more affordable, as well as much more helpful because they are still trying to figure out what all the genes do, and what they can predict. 

surgery is scheduled

I am happy to say that surgery is scheduled!  August 2!  That means we still get to go on our vacation as planned :)   My plastic surgeon consult is next week, and that wraps up all the 'consult' appts that need to happen before surgery, I think!  I am kind of sad that I won't be able to drive out to take Ethan to camp (I don't think, anyway) because it will be too soon after surgery, but I guess I can let Jim do SOME things!
I did a bit of research on my plastic surgeon- he is trained in flap procedures as well as implants, which means he will be able to decide which will work the best for my situation.   I am definately not taking Jim to this appointment.  I KNOW he will say 'how about just a little bigger, no maybe alot bigger' yea- he can stay at home for this one ;)

Finally things are coming together!

I meet with the oncologist next friday.  The referral to the plastic surgeon has also been made, so hopefully I will hear from his office in the next couple of days.
The genetics place called me today, hoping that I would change my appt. with them to a different time because CBS wants to interview some of their clients.  Unfortunately the appt I already have for that is the most convienient, and being exhausted currently supercedes my desire for 5 seconds on television.
In other sad news- I am officially un-enrolled in grad school for the fall.  This really truly upsets me.  I have been waiting for the 'right' time for soooo long, I finally find the right time, do all the work to get accepted, and bam!  It gets ripped from me.  I will start in the spring though- I think I will be well by then and ready to get started!

one small step closer

I talked to the surgeon's office today.   My MRI has been canceled, and I am officially 'on the books' for a single mastectomy with immediate reconstruction.  Wow, it seems so scary to have that decision be officially made.  Scary but calming too, in a way. 
Now I just need to get a consult with a plastic surgeon.  Then after all that, I guess a surgery day will be set.  It will likely be a Tuesday but might be a Thursday- about a month from now.

New boobs will boost your self esteem....and other things not to say to your wife

Poor Jim, He tries to say things that will make me feel better, but it seems that he has a case of foot in mouth-itis.  And instead of stopping when he realizes it (or maybe he just never realizes it) he just keeps on goin'.  Really, it makes sense that he would say the wrong thing some of the time.  It is ALL we can think about these days so whenever he thinks up something (warped as it may be) he shares, hoping to make me feel better.
So yes,  while discussing the fact that I am going to have a boob chopped off, he thinks 'Well, then you will get an implant on the other side, AND a brand new boob.  THAT will probably boost your self esteem'  Are you kidding me????  No part of this 'journey' is going to boost my self esteem.  Much to his dismay, it is one part of my body I have always been comfortable and happy with.  Having plastic and saline shoved into my sewn together body is NOT going to make me feel better about myself.
Then, last night he tried to tell me that even when he did want me to get a boob job, that really he just hoped they would be 'perkier' and more youthful.  But that he decided that mine were okay enough- because after all they were boobs, which is pretty cool, even if they were droopy boobs (sometimes I think he just isn't listening to himself- NOT the right time to say this shit, Jim!!!)  But he is looking forward to 20 year old boobs again..... oy!  yea, we will see about that.  I bet my freaky new fake body parts are going to look nothing like normal, and certainly not 'fun'.  well, except for the glow in the dark fake nipples, that part could still be fun.