Friday, April 13, 2012

April 13-Two weeks from Diagnosis

The last two weeks have been a full blown whirlwind.

I have had more doctors appointments in the last two weeks that I ever imagined.  And things are moving fast.  WAY FAST. 

I have been my own advocate and it hasn't been easy.  The first hurdle was the doctor.  My doctor referred me to a surgical oncologist who is one of the best that orange coast has to offer.  Unfortunately she's "Out of network" and my insurance won't cover her.  So they refer me to a vascular surgeon who specializes in gall bladders (true story!) I was PISSED and fighting it.  My OB (the most amazing woman ever, really!) tells me to visit the surgeon and that will help my fight for a new doctor.  All I really wanted was a surgical oncologist, not a generic surgeon!!! So I call to make an appointment with the general surgeon and the chick that answered the phone at his office was not friendly.  In. The. Least.  She won't even give me the doctor's NAME until I have my medical records, a demographic sheet and my test results faxed over.  This isn't working for me.  So I call his other office and talk to the office manager.  I start telling her what happened and she's apologizing profusely and makes an appointment for me for the next day.

I meet the surgeon and his first words were "Why do they refer me the breast patients?? I am not breast doctor! That is my daughter" and so he pulls out his cell phone, calls his daughter and I have an appointment with her that afternoon at 3pm.  He gives me her card and the first thing I do is google her.  She's published.  This is a good start.  She's got only good things written about her that I can find.  That's a good start.  We get to her office and it's wonderful.  She's wonderful.  That appointment was over 3 hours long.

During that appointment I learned that I have stage 2 breast cancer.  I have two tumors, one is a little bit bigger than the other.  It appears (in the MRI) that none of the lymph nodes are involved.  This is awesome news.  The left breast is clear.  However, because I have ductile carcinoma in situ and I have two tumors in my right breast she is suggesting a mastectomy of the right breast.  I'm a lot shocked.  I really thought I'd get out with a lumpectomy and be done.  She said that the two tumors and their distance apart and my age all make her a little bit leery of just doing a lumpectomy.

She left me with my options.  We are waiting to get the BRAC test back to test for the breast cancer gene.  Regardless I have made up my mind.  I am doing a dual mastectomy.  We are going to take both breasts and that way I don't have to worry about the cancer as much.  Because if it happened in the can happen in the left....

Saturday, March 31, 2012

Day 1-The MRI

The first stage of beating the cancer is finding out how bad it is.  On Friday morning I had an emergency appointment with my OB (the referring doctor).  First she suggested I have the genetic marker test (which I highly recommend for anyone that has risk factors.  Now that I know what it is!) and then she pushed through an authorization for an MRI.  I'm not sure how my doctor did it, but the MRI was going to be that afternoon.  The dude and I were able to go have lunch and go home before I had to report back to the hospital. 

I get to the hospital not really knowing what to expect.  The doctor and the radiologist both told me that the MRI was the first step...they want to see how big the tumor is, if the cancer has spread to the other breast, or if the cancer is in the lymph nodes or if it's spread further.  The MRI will focus on the breasts and the lymph nodes, and I will have a second if it's spread beyond that.  They will also be able to "stage' the cancer using the MRI.

I checked in for my MRI and they shuttled me back to a dressing room.  I changed into  my two hospital gowns (here's a small win....I fit into a standard hospital gown.  I was way thrilled with this as I haven't really fit in them for a while.  I am down 25 pounds since Halloween and I'm really starting to notice).  And then they come get me and take me back.  The tech says to me "you are heavy, we are going to do a dry run to make sure you fit into the machine".  My stomach immediately dropped.  I hadn't considered not fitting in the machine.  So we walk into the room and there is a bed that looks like a massage table with two holes where the breasts go.  I lay on the table situating myself where all the parts go and she starts to roll me into the tube.  My legs go in.  My butt swooshes the top of the machine, but it's in and so far so good.  Then my upper back and it stops.  She pushes my shoulders in and I can't breathe.  I am in but I can't take a breath without feeling the top of the machine pushing into my body.  I am almost in tears.  She pulls me out and tells me I am going to have to find a larger tube but she's not sure they make one or an open MRI, but they don't have one.  I am getting distraught and embarrassed and just upset.  Then she says, "wait.  You fit in the machine.  You just can't breathe, which means we only need an inch or so.  What if we take the padding off the machine?"  So she pulls all the padding (about 3-4 inches) off the contraption where my chest/breasts go and I lay back down.  She pushes me in, my butt doesn't scrape the tube and my shoulders have room.

This is a picture of the contraption you have to lay on to have the breast MRI and the tube behind it.  See how small!!

This is a stock photo I found of a woman in the "super man" position going into the MRI machine.

I breathe a huge sigh of relief.

HUGE.  So we go and she puts the IV in, while I listen to this ridiculous woman screech, pant, whine, sob and generally cut up, and then the pathology tech says to her "ma'am I haven't even gotten the needle prepped yet".  ALL that noise and he hadn't poked her?? Seriously?

The IV was in place and I am walking back to the 'tube'.  I get situated on the table, face down with my arms stretched out in front of me like super man.  She asks if I'm comfortable.  Really? no.  I'm not.  But I can handle this for the 20 min I need to handle it for and I won't move.  Then the tech gives me a set of ear plugs and asks what kind of music I want to listen to.  I tell her Adele (they have Pandora. YAY!) and she puts noise cancelling headphones on me.  I think it's a little overkill since the machine is on and is buzzing but not making any kind of hideous noise.

She leaves and I can see her in a little room.  She tells me to cough or whatever I need to do and they are going to get started.  Next thing I know the machine starts making a noise like the alarm that sounds before the baggage comes down the carousel at the airport.  My adrenaline starts to pump and immediately I am tense and on alert.  Adele is no match for that hideous noise.  I am trying to calm myself down and my heart pounds harder.  I can't move or we will have to start again but I am freaking out.

I start thinking of Kate at the playground the day before.  I think of Kate's face and her funny laugh and why mommy is going through this hell.  I am getting better because I'm a mom to the most amazing kid.  I am the wife of a man who would do anything for me.  I have an amazing family.  I am a very very lucky woman.  I start to calm down a little bit and then I start to think of the beach and the waves and the pier and my heart rate falls a little and my anxiety starts to subside.  A little.  Then the machine starts another hideous noise and I have to start all over again.

For 16 minutes.  It doesn't seem like much, but it's real torture if you aren't ready for it.

Then she comes in and tells me to stand up and stretch.  Ok, but I am in pain and my back hurts and I have to literally roll off the table. 

Next up....flat on your back with this antenna on your chest to capture your lymph nodes and to see if the cancer is in the walls of your chest.  Ok.  2 sets of 8 min just like the other one.  Get comfy.  Scratch your nose.  Ready....and slide in.

This is worse.  When I was on my tummy I could look in this funny little mirror and see around the room and see people.  Now I have to keep my eyes tightly closed or I start to hyperventilate because I'm in a tiny plastic tube that is screaming alarm sounds at me.  Then the tensing and releasing of the muscles of my legs and arms started.  Then an itch on my face.  Then my carpal tunnel started to flare and my fingers fell asleep.  And all the while I am laying there still, praying that I make it through this and that it is over soon.

The longest 32 minutes of my life is over.  I am free to change and go outside and breathe real air and not have to go back into the tube for a while.

I walked out into the waiting room where my sweet husband is waiting and tell him "THAT WAS AWFUL".  Then I see this older man sitting next to me and he looks horrified.  Oops.  He was next.  He wouldn't have the same experience because he wasn't there for breast cancer.

The MRI made me realize what I am in for.  I realize that this isn't going to be a cake walk.  This is going to test my strength.  It's going to test my resolve.  I am going to be like the soldiers of WWII.  I'm going to start carrying a picture of the dude and the punk with me to every treatment.  I am going to remember exactly WHY I am there.  I have only been married 8 and a half months. I have a 19 month old baby.  They deserve the mom, the wife, the woman they have.  I owe it to them, I owe it to me.

Friday, March 30, 2012


NO one is ready to hear this word.

Especially not me.  I am 35.  My biggest worry in the last few months was getting DH to agree to baby number 2 starting this summer.  I was happily bopping along, we were doing really well, focusing on paying off debt, working on number 2....busy with the business of living.

I went to the doc a few months back because I had what I though was a clogged milk duct on my right breast.  It was a hard spot and it didn't hurt or bug me, but I wanted to know what I could do to make it go away.  My GP didn't give me a good enough answer so I went to my OB.  She didn't like how it looked so she sent me over for a mammogram....I rather blew it off for another month then went in and had the mamo.  That was Tuesday, March 27.  That same day they did an ultrasound.  Then they scheduled me for a biopsy the next morning. 

Thursday, March 29 I got the call.  The cells tested positive for cancer. 

Breast cancer.  At age 35? Me?

I have no family history.   I am not overly at risk.  I am however, the newest face of the fight.

And fight I will. 

I have been diagnosed with two types of breast cancer.  I have ductile carcinoma in situ and invasive ductile carcinoma. The first is a non invasive cancer that stays in the milk ducts.  The second is the most common form of breast cancer.  The good news is it's highly treatable and responds well to treatment.

This is my battle.....