Broken Boob! (Also known as Paget's)

This is more for me to journal than to really share with anyone.  I am open to sharing what is happening and if someone else can be lifted from it, then I have helped more than myself...

This may be a bit TMI, so if queezy, don't read.  I am sharing TMI!!!!

Several years ago I had some sores under my arm, like a boil, that really hurt.  Then there were several of them.  Some of them actually came to the surface and opened up and lots of puss and blood came out.  It was very painful.  About the same time on the tip of my nipple, I had a crust.  An ITCHY crust.  And a little bit of a bloody milky discharge.  The itch was what was really bothersome.  The sores under my arm healed up but the itch on my nipple just would not go away.  I tried EVERYTHING over the counter thinking that this was just a yeast infection, or eczyma or something...if anything it started spreading.  The sores under my arm came back.   I went to my OBGYN..he put me on antibiotics and sent me to a breast specialist.  The breast specialist sent me for my first ever mammogram.  Boy, that was fun..(said on one ever!)  The specialist said she couldn't find anything wrong and said to keep an eye on it.  The antibiotics got rid of the sores under my arm for a few months, but not the itch.  I just lived with it!  The sores came and went, but the itch spread. A few years go by...
So we are now up to about February of this year:
 My cycle has really been a mess, I am itchy all over, I don't sleep, I am tired all the time, I don't feel good..AHHH..I am in perimenopause..says my OBGYN.  My thyroid panel comes back perfect.  My harmones are fine..I go to urgent care..more antibiotics and creams, but nothing gets rid of the itch.  Back to my OBGYN...here, take some estrogen cream..that should help...WRONG...

  My dear friend who just got her Masters in Nursing says, "Hey, your visiting teacher works at a womens clinic...CALL HER.." Now I hate pulling the VT card, but I was finally at my end. (Now how I feel about VT is a WHOLE nother story..that I will save for another time..) So I texted her.."Hey, my friend..Can I pull the VT card on you and ask for some help?"  She was more than willing to come to my home after a LONG day at the clinic, dealing with people all day..to come look at my owies. 
She took one look at my owies and said, "Hey, that is Paget's Disease!" Of course I have never heard of Paget's Disease.  She also did a swab of the gunk under my arm that has now spread to my breast and the other arm pit..Then said I needed to make this official and I needed to come into her office ASAP.
March: She got me into her office and the swab had come back..MRSA!  NO WAY!  My Dad and his sweet wife had been battling MRSA themselves, my Dad almost died from it!  So it is a family thing...crazy..
So she put me on antibiotics and sent me to have a mammogram/ultra sound done.
April:
Have my mammogram and ultrasound.  They don't find anything..That is good. But frustrating at the same time.
June:
 On the 3rd I had a biopsy done.  They did a punch biopsy right in the middle of a growing area and then gave me 3 stiches and told me to hold still for a few days..basically don't go back to work for the rest of the week. The stiches didn't bother me so much as the dressing to cover everything kept the heat in on my breast and made the itch on my breast explode!  I kept ice packs on it to keep it numb.  That helps a bit but I was sure happy to get the dressings off!
On the 12th I get a phone call from my friend..(Now refered to as "My ANGEL") she called to tell me it was indeed Paget's Disease.  HURAAY!  I am not crazy!  Now go have a MRI.
On the 12th I have my MRI done.
The 14th I have an appointment to get my stiches out, "you will now need to see a geneticist and a plastic surgeon..We will try to get you in ASAP", and a quick goodby from the doctor that was doing the testing..she is now off to a clinic back east...

Now I have had time to do my research on Paget's Disease.  It is cancer.  But if caugh early enough, 95% success rate. (Oh, and there are two types of Paget's Disease.  One is in the blood/bones and the other is of the breast.) Most of the time, but not always, there is a tumor that is inside the breast. I don't have a tumor. But I do have little offsets of cells..just a few..

 wait..wait..wait..They found more things on the MRI..you need a CT scan.
On the 19th do a CT scan..  wait..wait...wait...
22nd..phone call from my Angel..they found a mass on my lung..(mass meaning about 2cm) now need to go see a pulmonary specialist.  They need to do a biopsy of my lung to find out if it is related to the cancer.
So this puts off even seeing the geneticist..which pushes EVERYTHING back...
I am NOT good at waiting..plus the fact that I like a time line for things.  See the doctor on this day, test done on this day, results on this day, surgery this day, all better this day!

Now lets pause and talk about the emotional side of all this.  For several years now I have not felt good.  I have been frustrated and I push myself because I like to think I am not a lazy person.  I have felt that maybe I was doing something wrong..not getting enough sleep, not washing my bra's enough..wrong soap, wrong cream...To have someone say, "Yes, there is something wrong, and No, you didn't do anything wrong" is amazing.  FINALLY! Do I feel that everything that I am feeling is associated with the Paget's? Nope..I really think something else is wrong but I find that doctors only focus on one thing at a time.  Even though I know it is all related!    I know that people freak out when they hear the word "CANCER".  I have lost SEVERAL friends and family memebers to cancer.  IT is a UGLY thing.  But this is the FIRST time I have ever heard of Paget's and I am the only one I know that has it.  The more I educate myself, the better I feel.  The unknown is the hardest part of it all..how will it "FEEL", how will I "REACT" to everything, how "LONG" will it take?  I am SOOOO blessed to be married to an AMAZING man!  I KNOW he loves me.  Right there makes this so much easier to go through.  He is right there with me!  The best part is..he is NOT A BOOB MAN!  He is just fine with them being taken off! HA!  Breast are nowdays, an assessory!  Just like hair is an assessory.  Yes, I will loose my hair with chemo and radiation. (I won't have to shave my legs!!!) I am kindof interested to see how it will all grow back since most have a different color and texture when it comes back. I have had my hair short for years so to go a bit shorter (ok..a lot shorter) is not a big deal. Many girls at the school where I work have been shaving their heads to support St. Baldricks.  They are beautiful! 

June 27th..I see the geneticsist...Won't get results back for several weeks..What did I learn from that appointment..That once again I am a FREAK OF NATURE!  There is no rythme or reason for this cancer..I am that 1% for everything. Will the test come back with the precurser for Cancer..Don't know..Doesn't matter...I still have it!  Knowing if I have the precurser for Cancer will not change my decision on how to manage the Cancer. Please do not ready any anger into what I am saying.  There isn't any.
July 1st..I go in for a follow up visit to meet the surgeon and talk about a time line.  We are waiting on the genetic test.  The problem is that I am not sure if the test will be paid for, if not, then the test was done for nothing.
Then I go over and meet with the Pulmonary Specialist.  She shows us the MRI and CT of the spot they found on my lung.  It is in a weird place.  It also has calcification on it which says it has been there for awhile.  Now I am waiting for all the doctors to have a meeting tonight to decide how they want to proceed.  What a great idea!  I love the idea of all these doctors having a discussion about all the people they are taking care of and figure out the best plan of treatment.  It is like having 12 doctors all giving you a second opinion! I will know tomorrow if they decide to do a lung biopsy.  If they decide to do it then it will be the end of this week or the beginning of next week...Hurry and Wait!
July 2nd...I got the phone call..SOOO the mass they found (it is so small I don't know why they call it a mass) is in a weird place, just outside of the airways.  It is an almost perfect round ball shape with calcification on it.  It is in NO WAY connected to the BC (breast cancer) but everyone is very interested to know what it is.  If it is cancer in my lung then they do chemo before they do the mastectomy...which the doctors really do not think it is, but again are wondering what IT is... I am on the schedule for the biopsy on July 11th. BUT...I have an appointment on July 8th with the OBGYN department to see if ovaries are doing anything fun. WEEEE..its a bit funny how NOW they want to know what is going on with everything inside of me (but I STILL ITCH ON MY BOOB!)
So now we are all caught up with this side of my life.
I am finding it hard to keep up with all the texting and emails, I don't know who I have told what to and who I am missing.  I am going to post this so everyone can check here for updates.

This is a learning moment for all of us.  I am so THANKFUL for all the prayers and helping hands.  I am so blessed!