The beginning of my journey

Here it goes...
My first blog EVER.  I want to document my journey and hope that I can help other women going through this.  First I will warn you that writing was never my strength.  Please excuse me for that.  I plan on posting pictures of my journey as well so please keep that in mind.

I started this journey 4 years ago at my 6 week postpartum appointment.  My OB/GYN suggested I take a simple blood test because of my family history.  My mother lost her battle with ovarian cancer when I was 17 and my aunt was battling a breast cancer relapse at the time.  I had just had my third son, had a emergency open appendectomy 5 days postpartum and had my gallbladder removed 2 weeks postpartum...what was another stick with a needle?! Little did I know, that blood test would change my life forever.

A baby and two surgeries later

I got the call at work about a week later.  I knew something was wrong when the doctor was on the other end of the line instead of a nurse.  He gave me the news and the statistics.  He wanted me to schedule a hysterectomy immediately and seek out a surgeon that would do the prophylactic bilateral mastectomy.  Wow that was a lot of news to get at work.  My brain shut down and all I could do was cry.  I had this tiny baby and had just returned to work after a birth and two surgeries.  I didn't want anything to do with hospitals or doctors at that moment.

A few weeks went by while I tried to forget this information and get back into the swing of things with a new baby.  I processed the information slowly and had break downs many times while alone.  Breastfeeding was more important to me than pushing to have the surgeries so I put it all on the back burner.

A few months later I developed a lump in my right breast.  I called my family doctor and got in right away.  He ordered a mammogram and breast ultrasound.  My tests came back ok.  I had a cyst in my milk duct but it would go away on its own.  The reality of the gene mutation hit me and I knew I couldn't ignore this.  I started getting mammos and ultrasounds every year from that point on.

I knew I wasn't ready to move forward with the surgeries yet but at least I was being proactive and getting tests regularly.  I couldn't imagine taking away the precious moments with my last baby.

nursing from a mother's view

These breasts have fed three children and provided comfort for them.  I couldn't take that away until he was ready.  I think I needed to give him his time before I could even consider chopping them off.  I felt that way...like I was chopping my boobs off.

I looked at pictures and was horrified at first.  Now that I have done more research and found more support I feel better about it.

Jump forward two years and I married the love of my life.  After 10 years of living together, three sons and all the tribulations of life we finally decided to get married.  I know...a little backwards but o'well.

Our wedding day

We live a crazy life.  Its full of ups and downs, running like crazy for sports, different work schedules and just plain life.  We make the best of it all and have a blast in the process.

Recently we had a scare with my father.  His prostate has been enlarged and had to be removed.  The thought of losing him made me realize that I need to get serious about BRCA1.  I did my research and found a GYN that has lots of experience with BRCA.  I guess she is in high demand because I had to wait 2 months to be seen.  I went to my appointment thinking it would be the same as my previous doctor and I would have to ask for specific testing I wanted done and beg for things I thought I needed.  Wow was I shocked!  She is amazing!  She walked in the room, sat down with me and asked my opinion first.  She asked me where I was in my own head with this information and what I wanted.  We discussed breastfeeding and my plan to wait for the breast surgery.  She referred me to a general surgeon and plastic surgeon that work together well and have experience.  Amazingly it was the plastics guy that I had already chosen for my breast surgery.  I was impressed that we were on the same train of thought already.  Before I even had a chance to get out my list of questions she was answering them during our talk.  I went in planning to beg for breast MRIs and she brought it up first.  I had been begging my previous doctor for years but she guaranteed me that she will get it approved within the next 4-6 weeks.  She did a CA-125 test while I was there and ordered an ultrasound for the next day.  Wow what a difference it makes to go to someone that knows more about BRCA!

We discussed the hysterectomy portion and decided that it is time to move forward with it.  She also referred me to an oncologist that specializes in female cancers.  No waiting there...she called personally and got me an appointment for three days later.  I see him Tuesday morning.  She told me he may recommend an estrogen blocker.  I think I'm more terrified of the medical menopause than the surgery.

I am calling my GYN back tomorrow to set the date for my hysterectomy.  I had to get some things in line after seeing her on Thursday.  Short Term Disability denied me because I'm not outside of my 12 month preexisting clause so I have decided to liquidate my annuity to cover my wages.  Lots of big decisions and emotions over the past few days but I'm handling it.

A few weeks ago I decided I needed something to remind me daily that I am BRCA1 positive so I got a tattoo.  I decided I wanted the breast and ovarian cancer ribbon and added the word Strength because it takes a lot to get through all of this.  At the end of my journey I want to add the word Previvor to it somehow.

That's the beginning.  I lost my mother to ovarian cancer when I was a teenager and I don't want that to happen to my boys.  

My boys

Know your options, talk to others, join a group, make the decisions that are right for you.  For me the decision is clear because I watched my mom battle ovarian cancer for over two years.  I saw the fight and I watched her lose.  The journey scares me but cancer scares me more.  I live every day of my life feeling like I'm waiting for cancer to strike and I'm tired of it.