Stage 3A--Gulp, This Sucks

I found out in the hospital that my sentinel nodes tested positive for cancer during surgery.  I found out the day I returned home from the hospital that 4 additional nodes tested positive for cancer.  That is 5 our of 13 nodes that held this demon living inside of me. 

Since I am finally catching up with blogging--sorry I can only handle so much cancer talk each day--I met with the my oncologist yesterday.  I figure I should claim her, we are going to have a long term relationship.  

A few people have asked how I chose an oncologist.  Well I don't know anyone in real life who went through breast cancer at 28 recently or who lives in the area.  I really like the Piper Center, apparently it's one of the best cancer centers in the metro area, so I started an online search for the doctors who partnered with the center.  I found this lovely petite looking lady named Dr. T.  She was Harvard medical school with undergraduate degrees in biology and religion.  She seemed to have a strong but calm presence yet faith.  I looked at a few others, but ultimately kept coming back to Dr. T.  I guess she was it. 

After arriving in the serene office of Minnesota Oncology we were told by the receptionist that there was coffee and tea available.  Holy crow; they had real mugs.  In I'm sure what was an attempt to make the place a little more tolerable they had the hearts of Sam, my mom, and myself. Sign me up, I'll take a tea.  My mom had her tell-tale hot chocolate (I seriously think she has an addiction) and Sam had a cappuccino.  We waited patiently as many hairless people walked by.  

I felt like everyone was staring at me.  "That must be the new girl," is what I thought they were thinking.  I donned a healthy complexion, all of my hair, and the lovely lumps under my hoodie pockets which were my drain tubes.  I sat back nervously checking Facebook and drinking my chamomile tea.

We were called back and my weight and height was taken (seriously they really know how to ruin your day).  We got to our room and more vitals were taken.  The nurse came in to go over the 10 page health history I had filled out.  Ok, maybe not 10 pages, but probably 8.  She had a really odd sense of humor that no one was really sure how to take.  Before she left the room she asked what I was expecting out of the visit.  Heck, I've never done this cancer thing before.  I had no clue.  She asked if I had done any reading.  Umm, hell no.  I tried one night and the first thing Google showed me was the poor survival rates of woman under 30.  I immediately shut the computer and never went back.  I'm not paying Dr. Google, I'm paying my team of physicians.  I should listen to those I'm paying for their hard earned, very expensive opinion. 

Dr. T came in and started going through all of my test results.  The biopsy, the MRI, the genetics, and finally the surgical pathology.  This is what the doctors use to see exactly what is happening and how they will treat it, but also how they will stage my cancer. 

I kind of knew what was coming, but didn't really feel like hearing it out loud.  Breast cancer is staged at Stages I, II, III, and IV.  At stage III they break it into A, B, and C.  This is based on your tumor size, lymph node involvement, and how fast the cells are dividing.  My cells were now at a grade III out of III.  This means the cells are dividing very fast and growing quickly.  The primary tumor was still measured at 1.7cm and the secondary tumor of 7mm was a benign mass.  Again, I had 5 out of 13 nodes positive for cancer.  This puts me at a Stage IIIA.  

Because of my age, stage, lymph nodes, and cell division I have earned myself a ticket to chemotherapy, radiation, and medication for 5-10 years.  This sucks.  My mom put it best; aside from wanting another child, my second selfish request is to not lose my hair.  

Dr. T pretty much insured that I will lose my hair.  She gave me a prescription for a wig and told me the American Cancer Society will give a free wig.  I wonder what I will look like bald?  There is a 20% chance that chemo will put me into an early menopause.  So there is hope for a miracle baby when this is all said and done.  I do have the option to harvest and freeze my eggs, but with no guarantee we will need them and a $12,000-20,000 price tag Sam and I have decided it's not for us.  I have always talked about adoption and maybe one day that will be the way God completes our family.  There is light at the end of the tunnel, there is hope.  Thank you all for uplifting me in prayer, with kind words, and encouraging calls and cards.  I need each of you to beat this.     

It Took 8 Days

Every time my dressings were changed in the hospitals, every time my mom has helped my wash up or change I haven't looked.  You know, I like my breasts.  They were a good size, nice and perky, and they fed my son for a year.  Before all of this cancer crap I had said if I was ever diagnosed with breast cancer I would cut them off and be done with it.  I guess that's what I did.  But being a woman of child bearing years I yearned for the day I could have another baby and bring him to breast to feed him. 

I know, I know.  Everyone who saw me through the first 12 months of Camden's life will laugh at that last comment.  I hated pumping.  I would lug that stupid black tote bag (thanks Medela for being discreet) down the hall to pump.  It was torture.  I hated doing it.  I hated being run by the clock which were my breasts.  But at the end of the day it was a sense of relief accomplishment when I provided enough for Camden, plus a little more most days.  Breastfeeding is an amazing bonding experience with your child.  It was one of the hardest things I have ever done, but I wanted to prove not only to myself, but to our society that a working mom (and part time student at that) could breast feed successfully for 1 whole year. 

If it wasn't my life we were talking about I would have done anything to be able to breastfeed again.  But with a BRCA 2 + diagnoses my best chance at survival was a bilateral mastectomy.  I may have cried when I saw my breast pump in the closet.  Such a love/hate relationship with that thing. 

So 8 days post op.  I still hadn't looked at my new and improved, cancer free chest.  I don't know what I was expecting.  There is a small breast mound from the tissue expanders, but no nipples.  Those are milk ducts too and that is where my cancer was growing.  My cleavage is completely numb as is the skin on the top of my breasts and under my right arm pit where they took the nodes.  Sam hadn't looked either.  We made a pact that we would do it together. 

We finally got my second suit post mastectomy camisole.  So I needed to change and get into something clean.  Sam helped me and we vowed to look together. 

Hey, not bad.  They are tiny little teenage breasts with no nipples and giant incision covered in paper sutures.  I still miss my breasts.  I had a love/hate relationship with those too, but I will grow to appreciate my new breasts.  We still laugh together that Dr. K, the plastic surgeon, was sure to tell us my new nipples would not have sensation.  Hopefully I will get past this tissue expander phase by the end of the year. 

Sitting In A Chair

That's what I have been doing for a week.  There really isn't too much exciting to report.  I spend most days cruising through Netflix, checking Facebook, and napping.  I have a 5 pound lifting restriction so really anything that would make me not so useless is out.  I can't lift Camden, I can't pour from the milk jug, I can't lift the diaper bag, I can't lift a pot to cook. 

We have an AMAZING church family.  We attend a little church on the grow in Maple Grove.  We have been attending since I found out I was pregnant with Camden.  Northwood Church has been truly a God send for us.  After we had Camden our neighbor, who also attended the church, set up meals within the meals ministry.  When our children's pastor found out about my diagnoses she set us up with the meals again.  Home cooked, freezer ready or heating ready, extremely tasty meals delivered to our door every other day.  I can't even begin to tell you how much help this has been. 

The first meal was at our house when I got home from the hospital.  Delivered by the ever colorful Muriel.  For those reading who know Muriel will know exactly what I'm talking about.  I learned recently Muriel is the eldest of 8 children and boy does she love the kitchen!!!  It is truly her gift to supply some excellent meals to . . .  well everyone.  I don't know what it is about these Northwooders, but they must love their baked goods as well.  We have so many sweets! My mom and Sam are in heaven. 

I'm getting behind on thank you notes for everyone.  From the many bouquets of flowers we have received, to the amazing care package of European chocolate from friends in Germany, to the magazines, and blankets.  I will get around to it, but thank you.  Thank you for all that are praying, all that are helping, all that are calling and texting, and even to all of you reading.  We will win this fight together.  When I am named a survivor I want you all to rejoice with me, because you have helped me fight this battle day by day.

(image: Google images)

Homecoming

I finally got to leave the hospital on Monday, just after noon.  It was so nice to breathe in fresh air and feel the cold.  It was lunch time and my mom and Sam were hungry.  My dad left that morning to beat a snow storm and Kristen had stayed home.  On the way home Sam tried to avoid the pot holes because bouncing in the backseat hurt.  We stopped at Noodles and Company for lunch.  I had my usual; Wisconsin mac n cheese with a Parmesan crusted chicken breast.  I had my first taste of how hard these restrictions would be in the real world.  I could barely get into the booth by myself and I couldn't cut my chicken by myself. 

I'm sure I was a sight to see.  I cut my hair fairly short just before the new year so it was hard to pull back any way, but before we left the hospital I asked my mom to pull it back for me.  She combed it back and I thought she had adhered it with a binder . . . nope.  She then asked Sam for my hair binder and my hair stayed in place.  I guess that's what 3 1/2 days of no washing will do to hair that is normally washed every day.  I was in Sam's sweats and an old college dance team zip up hoodie.  The lady at the table next to us kept staring.  I know it wasn't meant to be hurtful, but I wanted to scream "yes, I have cancer and I just go out of the hospital from cutting off my breasts."  I'm sure it would have made her stop, but I thought keeping my filter was better. 

After lunch we learned my dad was stuck in Fargo for the night because I-94 was closed.  He was more concerned where the Fleet Farm was so he could do some shopping.  We got home, and the firsth thing I did was have my sister wash my hair in the kitchen sink.  Then I found a chair and was ready for some pain medicine.   

Outraged

I know I'm behind and need to finish up what has happend this last week, but this morning I was checking out Facebook and I noticed a post from The Dave Ryan in the Morning Show.  Apparently due to Facebook's policy on keeping clean photos and non-nude photos on their site they chose to remove the following photo.


This is a women who posted a photo of her chest.  Yes, techinically her bare chest, but it is an elborate tattoo over her bilateral mastectomy.  I am purely outraged at Facebook.  How dare they?  There is no cleavage, no nipple, no butt crack, no vagina, no penis.  What about this is offensive?  I left a comment on The Dave Ryan Show's page:

As someone who just had a double mastectomy 8 days ago, I find Facebook to be in the wrong. Without seeing this women's face you can tell by her body she is fairly young. I am 28. To make a decision to remove your breasts for the sake of saving your life is the hardest decision I have ever had to face. She may have removed her breasts so one day she will be alive for a spouse and children. This is a shield of armour. This is strength. This is beauty. Tell me where are you seeing nudity and where do you find this offensive?

I'm sure my little blog to keep people posted doesn't go far, but if I can bring awareness so more women do not have to live the last 3 weeks that I have had to live, I will do it.  So Facebook, maybe check through these photos you "own" and pluck out the truely offensive ones.

The 3 Day Hospital Stay

I was told from the beginning I would be staying 2 or 3 nights for pain control.  This scared me.  We have calcaneus fractures or complex tibia fractures that only stay 1 night for pain control--so what kind of pain would I be in? 

The first night was hell awful.  I had the same nurse every night, Sarah.  With amazing compassion and bed side manner she greeted me about every 30 minutes when I hit the call button.  Not so easy to do when you are given t-rex's arm range of motion.  My pain was out of control and I was so nauseated.  I felt fine after surgery and when I was on my way to my room, but once my clan left, it got out of control.  I was so lethargic from anesthesia and my pain was rating 9 out of 10.  Sarah couldn't get things figured out for me.  I tried my best to stay calm, but I was writhing in bed in pain.  Between IV dilaudid, zofran, and lot of fluids the night felt like it was never ending. 

I finally got a little bit of rest, but of course was awoken by a CNA to check my vitals and empty my drains.  After surgery I was bound up tight in an ace bandage with a drain tube coming out of each side.  These drains will stay with me for nearly 2 weeks total.  I did have the tissue expanders placed by Dr. K so my chest felt like I had just worked out my pecs for about a weeks straight. 

My day nurse Cheryl came in.  Cheryl had a purpose.  She was going to get me out of bed, to the bathroom and out for a walk regardless of how crappy I felt.  There was no laying around on Cheryl's watch.  She told me I needed to talk 4 times.  She made a checklist.  Oh and I love to check things off check lists so I was bound to meet my goal.  I tried to order lunch, yep that didn't go down at all.  I was still so nauseated. 

While on a walk one time, my mom asked, "Do you remember Kristen?" My drugged up response, "of course I remember Kristen, she's my sister you fool."  Reflecting back I think she meant do I remember her coming last night.  Whoops, sorry.

Night time fell again and I was still aiming to head home on Sunday.  The night went horribly a little better.  Sarah was still in my room probably every 2 hours for pain and nausea.  She kept up with my muscle relaxer, the IV zofran and dilaudid.  I was still in quite a bit of pain.  The morning came a lot sooner this time.  My family hadn't arrived yet, but a partner of Dr. DJ came by to see me.  Because I really hadn't eaten anything since the night before surgery, I wasn't going home.  Cheryl came in to strip my drain tubes and help me out of bed for our walk.  I began to sob. 

I felt like crap, I felt like I was beaten with a baseball bat, I couldn't put my own hair up, I could barely wipe when I used the bathroom, and I have impending chemo with a toddler at home.  I was feeling sorry for myself. Cheryl sat down next to me and insured me I will do great.  She listed of statistics, she told personal anecdotes, and told me I had to pull up my boot straps and fight.  Ok Cheryl, I'll do just that.  Help me pee and let's walk. 

Dr. K was back at my room when we finished out walk.  I told him I can't feel this way anymore.  We talked about my meds and switched off the narcotics to ibuprofen.  I took a quick nap and before you know it I felt great.  I actually had something to eat that afternoon.  McDonald's french fries.  YUMM . . . . don't judge.

I didn't have to call Sarah in at all that night.  She just came in to stay on top of my meds and take vitals.  Sleep is still not comfortable, but at least I wasn't awake from pain.  The next morning I was bound and determined to get out of there.  My discharge orders were in, I just needed the final ok from Dr. DJ and I was gone. 

The pain really isn't bad.  It's just a t-rex arm rang of motion and the constant ache in my chest that is hard to deal with.  Randy the nurse pulled my IV, Dr. DJ came in to visit, and my meds were delivered.  I was set FREE!

Surgery Day

We drove to the hospital as a group.  My bag of what I thought I would need was packed.  Some sweats, a couple zip up hoodies, make up, clean under wear and socks, and my phone charger.  You know if you google labor and delivery bag you can find umpteen lists and tips.  For fun, I googled mastectomy hospital bag.  Yep, nothing of help.  I guess I would wing this one on my own.  For those interested.  I didn't use any of it while I was at the hospital, just an outfit upon discharge and my phone charger. 

We got to the hospital about a 1/2 hour early.  We were greeted by some friendly volunteers, "Welcome to Abbott Northwestern,  do you know where you are needing to be?"  Umm, no, I mean yes.  Radiology registration is where Christa the surgery scheduler told me to go.  We found our way there, guided most of the way by the greeter.  Next to the spa like Piper building, just down the hall.  We found a quiet waiting room and all nervously played on our phones.  At about 10:00, check in time 10:15, I decided to head down to radiology registration and get checked in. 

I decided to go it alone for this part.  No use towing a party of 3 behind me.  Greeted by a young man in vest he found my charts, I signed some papers and was guided down the hall to another waiting room.  I had to get a radioactive shot in my right breast.  This was going to help guide Dr. DJ to the lymph nodes she would take during surgery.  I prayed that she would stop at the sentinel node. 

I waited in the waiting room for what seemed like forever.  Texting Jess, the breast cancer angel, that I was still waiting and getting nervous.  Sam and my parents were still down the hall.  I was ushered back by a kind nurse to again undress from the waist up and get into a gown.  A quick shot of lidocaine, and then some radioactive  material and I was on my way with my plastic bag of belongings. 

We picked up my crew and went down stairs to the preoperative care center together.  Checking in again and then to wait some more.  I was starving and thirsty.  It wasn't long until they called me back.  I had to go back by myself to get prepped.    Undress fully, put on a paper gown, pee in a cup, get hooked up to an awesome heating thing.  There was this box of lights on the wall, when each person came in they would turn off their light.  I had a CRNA student try to place my IV, yea, that didn't work.  But he tried.  Another nurse came in and got an IV started right away to get my fluids started. 

The doctors came in and marked me up.  I think I stated my name and date of birth and procedure about 50 times.  Sam and my parents came back after my IV was placed.  We took a few pictures, Sam got one last peep show, and the CRNA's came in to discuss what was going to happen when I got to the OR.  The CRNA put some medicine in my IV and off we went.  I think I was out before we hit the OR. 

Once Dr. DJ was done with her part, she went out and talked with my family.  She let them know she took the sentinel node and sent it to pathology.  It came back having cancer so she took all 12 nodes under my right arm.  Dr. Kobienia was in doing his part.  This was not what we wanted to hear.  I will for sure need chemo and depending on what the final pathology says, possibly radiation. 

I finally was brought up to my room around 9:00pm.  Apparently there was an emergency on the floor and the nurses couldn't take me yet.  When I was being wheeled down the hall I heard my baby boy saying "momma."  He had finally said this just a few days before.  Sam leaned him in for a kiss.  Best thing ever.  Once in my room, this girl appeared.  It was my sister--umm, what?  I was so confused.  What was she doing here?  She is in dental hygiene school, she can't miss class!!  It was a surprise that apparently everyone knew about except me.  2nd best thing of the day. 

I don't remember who finally told me the cancer was in my nodes.  I cried.  It's never good when the cancer gets in the nodes.  I didn't want to do chemo, I didn't want to lose my hair, I didn't want to be sick.  Real cancer patients have chemo.  I wanted the surgery to fix everything. 

Today's the Day

Today is the the day.   Sam and I had a great day yesterday.  We started the day off as a family.  We went for family pictures; I can't wait to see the images.  Camden then spent the evening with my parents as Sam and I went for dinner and a movie. 

I woke up this morning actually well rested.  I slept about 6 full hours.  Surprising because like most, I don't typically sleep while I'm stressed.  I woke up with a song in my head.  It happens to be a hymn I grew up with, "It is well in my soul."  I think this is God's way of telling me I'm going to be ok. 

I go in about 10:15 so we have only a few hours to get things ready and wrap up a few things around the house.  Of course we will keep you all posted after my surgery.  It's going to be one of the hardest days, but I feel well within my soul. 

My Sea of Pink

I believe when you need to hear God, He will speak.  I believe  when you need support, God will provide.  Well, God provided and He spoke to me on Wednesday giving me peace and hope in my soul. 

Wednesday was my lat day of work.  I really didn't have a lot to do, just finish up a few things to hand it over to my coverage (who by the way is amazing!).  I walked into work about 10 to 8 like every other day.  I wasn't expecting anything out of hte normal, maybe a few extra tears and hugs, but nothing else. 

My lead is alway there at 7:30 so of course she was hard at work already.  We have the option of wearing our uniform scrubs or wearing business casual when we are in the office.  Well, my lead ALWAYS wears her blue scrubs.  Always.  She was wearing this great new pink top with some nice black dress pants.  She looked great!  So of course I mentioned it,

"Dawn, look at you!  You look amazing!  Do you have somewhere to be after work?"

"No."

Ok, now I was really confused.  "Well, why are you in normal clothes?"

"I had to wear pink."

"Well, why did you have to wear pink?"  I really had no clue, maybe for her daughter or shoot, who knows. 

"For you!  Look around, everyone is wearing pink for you today!"

My heart was so happy I burst into the Ugly Cry again. I looked out as my cube neighbor Jenny popped out in a bright pink shirt, Judy from the front desk was wearing pink.  Literally as everyone showed up, they were all wearing pink.  My army was there to fight for me.  

My friend and co-worker Katie popped around the corner with a huge smile on her face and said "You have to open your gifts!"  My cube was full of a large pink bag and a few cards.  I didn't even know where to start.  I wasn't expecting any of this.  I started with the big pink bag.  From Katie with such an inspirational, heart-felt card.  Inside was a comfy throw, chapstick, lots of trashy magazines, a beautiful bracelet, and her awesome sea salt fudge brownies.  The perfect post surgical kit of relaxation.  I cried again.  

She then pointed me to a yellow envelope.  "That one is from TCO."  I thought, oh maybe a card everyone signed, or maybe a small gift card.  I opened it, read the nice message and saw 2 gift cards.  One for Target, one from Visa.  I said thank you to Katie and left it at that because my mom taught me it's rude to look for the $$ first.  Katie told me to look.  Cue tears  the water fall.  Holy crap.  My coworkers generously donated a total of over $1000 to me to help with groceries and gas.  I was beyond . . . . . . . . . . . . . . . . speechless. 

I literally had no idea what to say, other than thank you through my tears.  Katie explained how it was hard to pull everything off because I'm so nosey.  She had organized the whole thing with a little help from others.  I was feeling so blessed, so uplifted, and so supported. 

So in short, thank you coworkers.  You have truly amazed me withi your generosity and prayer.  The day went on with lots of tears and little work, but I left with a little less fear and a little more hope.  

So here is my SEA OF PINK

   

  

  
  

 

 

When I got home  from work, my parents had made it safely.  Our pastor from our church wass coming over to pray with us, something I had been looking forward to all week.  He came with his wife and got right to business.  He read to us Psalm 121. 

 

¹ I lift up my eyes to the mountains—
where does my help come from?
² My help comes from the Lord,
the Maker of heaven and earth.

³ He will not let your foot slip—
he who watches over you will not slumber;
⁴ indeed, he who watches over Israel
will neither slumber nor sleep.

⁵ The Lord watches over you—
the Lord is your shade at your right hand;
⁶ the sun will not harm you by day,
nor the moon by night.

⁷ The Lord will keep you from all harm—
he will watch over your life;
⁸ the Lord will watch over your coming and going
both now and forevermore. 

 

The Lord is watching over me.  This is stated 4 times in different words.  One thing I learned when Jason died, told to me by the pastor who married us, was God has really big shoulders.  You can be so angry with him, but He will still pick you up and carry you through the hard times.  When you finally turn around and say I love you to Him and thank you, He will gently nod and say I love you too. 

 

I know the Lord is with me, the Lord will carry me.  I believe strongly in the power of prayer and strength in numbers.  The one thing that was shown to me on Wednesday was my army of prayer warriors is far larger than I can imagine.

 

Thank you . . . each of you.

Genetics Are Back

Late Friday afternoon I got a call from the genetics ladies at the Piper Center.  It was 3 minutes until my work day was set to be over, but I recognized the tell-tale 612-863 number as one from Piper.  The incredible smart and fast talking geneticist told me my BRCA results were in. 

What? Hold the phone.  These results were supposed to take 2-3 weeks to get back and it had only been 8 days. 

BRCA is the cool genetics way of abbreviating BReast CAncer.  There are 2 breast cancer genes known by  scientists today.  BRCA I and BRCA II. 

BRCA I carried very high rates of early breast cancer, reoccurence of breast cancer, and development of ovarian cancer.  BRCA II also carries the risk, but it's much better in terms of statistics. 

One of the first things people ask a 28 year old with breast cancer is "does it run in your family?" In short yes.  My grandmother had breast cancer more than once which resulted in a bilateral mastectomy.  She then developed ovarian cancer.  But, Grandma Mary (my dad's mom) is still kicking it strong at 83 years old.  Her first cancer developed at age 61.  This isn't young, but relatively speaking it is young.  She is 15 years cancer free from her last cancer.  This gives me a lot of hope. 

Our pathologies were very similar.  She was also estrogen and progesterone positive.  For some reason I never felt this was a coincidence.  You don't find many coincidences in science.  Mary always said "I bet I have that gene."  She doesn't have a lot of direct breast cancer links, but there were many other women in her family who also died of breast cancer at fairly young ages.  Mary was never tested for BRCA.  Back when she had cancer there were not laws in place to protect her family.  Her doctors actually urged her NOT to get tested.  He told her if both she and her son's families had Blue Cross (or any of the same insurance) if she came back positive Blue Cross could use her diagnoses as a pre-existing condition and cancel her son's policies.  She didn't want to hurt any one from getting medical care if they needed it. 

Because I am so young and there are now federal laws in place to protect my families, I opted to get tested.  I felt like this was the final piece of information my Type A personality needed. 

I am BRCA II positive.  I carry the breast cancer gene.

Somewhere along my gene sequence at pair 2,609 (or something like that) I am missing a T.  Think of your DNA unfolded like a ladder.  At each rung of the ladder there is a pair of letters.  The combination and order of the letters make you who your are.  G, T, C, A.  The G is matched with C and the A is matched with T.  Down my ladder where there is an A I am missing my matching T. 

Something so trivial, yet so tell tale of what is going on in my life today.  This mean my dad has to have this gene and Grandma Mary has to carry this gene.  She was right.  She is a breast cancer gene carrier. 

To some this may sound awful--NO!!  To me this is great news. We know exactly what is causing my cancer.  This is one of the 2 most studied breast cancer genes.  Doctors and scientists know how to FIGHT my cancer.  This also means my surgical options aren't really options any more.  The recommendation for someone who carries a BRCA gene is to do a double mastectomy.  I AM MAKING THE RIGHT CHOICE!! 

This results took a huge weight of uncertainty off for me.  There is still a lot of unknowns and hurdles to pass, but right now I know the plan of action we have chosen is the right one.  I will not second guess myself and I will never look back and think I should have chosen differently. 

My Breast Cancer Angel

I've been a part of an online community of women since Sam and I got engaged.  Most recently I participated on a board for women who were trying to get pregnant or recently had babies.  Through this group of my nestie bestie I met Jess.  I knew she had had breast cancer at age 23.  The day I was diagnosed she quick texted another friend who  had my number to get in contact with me. 

She has been through this journey and lives to tell her story on the other side.  She has helped my interpret pathology reports, surgical options, the insane and sane feelings.  She has reminded to me cry and be mad, be happy and blessed, and look for the future.  I don't know if she really understands how truly amazing she has been for me. 

Jess was diagnosed at age 23 and chose a bilateral mastectomy with reconstruction.  She is pregnant with her first child and is due in March.  She is my angel . 

For those who are praying, please add Jess to your prayers.  Pray that she has patience with her new baby boy, pray that the cancer does not return, and pray that she can make choices about her health to be on this Earth for as long as she can. 

I'm short on words because I can't express to you what she means to me and my journey.  If she wasn't 36 weeks pregnant I think she would be on my doorstep with a suitcase ready to move in and help.  Thank you Jess, you are a God send for me.

The Decision

After the MRI (results are in The Details) Dr. DJ had us come back to her office to talk again about surgery.  This was one week to the day where I was told I had cancer.  I sat in her office staring at her gorgeous hair, not really listening because who really listens after you are told you have cancer. 

Sam and I had talked A LOT about what each surgical option meant and what it meant to us.  I hated that we had to have this talk.  No couple married only 3 years should have this talk.  I think it was probably the most serious conversation we had ever had.  This choice could affect us forever.  We weighed all options and came to a conclusion.  I will lay out the options we are given and go through our thought process. 

Lumpectomy
This is a breast conserving surgery.  The tumor will be removed with enough clear margin--cancer free tissue--and your breast will be sewed back up.  This will leave the breast typically deformed, but you will still have your anatomical breast.  This ALWAYS requires radiation treatment for 5-6 weeks for 5 days per week. 

(Image: http://www.thecancerblog.org/blogs/archives/The-cancer-blog/1160919567-Nov-18-2006.html)
 http://ww5.komen.org/BreastCancer/Lumpectomy.html

Mastectomy
This can be done as either one sided or both.  All of the breast tissue is removed including at least your sentinel node--first lymph node--and possible all of the lymph nodes in your arm pit.  This typically does not require radiation treatment.  This is where plastics comes in.  Reconstruction can be started right after the breast tissue is removed.  Tissue expanders will be placed, so when a woman leaves the hospital she will leave with some breast mound. 
http://ww5.komen.org/BreastCancer/Mastectomy.html

After meeting with the genetic counselor and the plastic surgeon Sam and I felt we had a lot of information to go over together.  We had a lot of pros and cons to go through and we are confident in our decision.  Like most things in marriage, this was a compromise.  We needed to make sure both of our worst fears were eliminated. 

With a lumpectomy the thought of radiation never set well with me.  The plastic surgeon made it known that radiated skin couldn't be reconstructed as well.  The skin is burnt and doesn't stretch as much so adding an implant would be difficult.  I didn't want to stare at a shark bite in the mirror everyday.  Even though this would conserve my breast the chance of reoccurence is higher than mastectomy.  Being a 28 year old woman I have a lot of years for cancer to come back.  The genetic counselor asked us if we were willing to go through this process again; because with a lumpectomy you would be screened and if the cancer came back you would have to do this again. 

With a single mastectomy I would be able to preserve my left breast.  That way if we are blessed with another child after this nightmare is over I could breast feed that child.  Breastfeeding is very important to me.  I breast fed Camden for a year, I have counseled other new moms on breastfeeding issues and successes, and I hoped to one day become a lactation consultant when I was done with nursing school .  I feel strongly that breast milk is the best option for babies.  Leaving breast tissue would leave the door open for cancer to return on the left side and again having our family to go through this process again. 

Double mastectomy I feel gave me an answer to all of my fears.  The chance of reoccurence would decrease.  I wouldn't have to worry about additional screening showing up with more cancer and I wouldn't have to put my family through this again.  The reconstruction options would be the easiest.  Do both at one time and have them matching.  The bad side, I will never be able to breast feed again.  But I will not have to worry about breast cancer coming back.  

I have a lot of years left and the chances of reoccurence is very high for me.  We are still waiting on the genetic BRCA results to come back, but in short, 28 year olds don't typically get cancer.  Sam and I talked and talked and talked some more.  We don't ever want to have to do this again.  This has been hell.  This has been a nightmare.  I go to bed crying and I wake up crying.  I'm scare of uncertainty and I want to be a mother to another baby and I want to be around to be a wife, mother, daughter, and sister for as long as God has planned.  I feel like this will not defeat me.  It may define me and it will test my strength, but I will win.  We asked ourselves if the cancer did come back, what if I didn't find it so quickly? What if it comes back with a vengeance?  What if they can't operate and just take it out?

Our solution and our choice--yes OUR because my breasts are equally mine and my husband's--is to do a bilateral mastectomy with reconstruction.  If my one sacrifice is breastfeeding I will take it.  I will cry and I will be upset when I can't bring my baby to breast to feed him, but I will be alive for him and my family.  

My surgery is scheduled for February 15th.  I'm ready and I will attack this.  I have my team of surgeon's, doctors, friends, families and prayer warriors.  You are all my army behind me and together we will win.   

MRI--Claustrophobia's Worst Nightmare

As part of the additional screening to see what the cancer is doing, Dr. DJ ordered a breast MRI.  She would be looking at both breasts to make sure there was no sign of additional cancer and no cancer on the left side.  This would also give her a better picture of where exactly the tumor was sitting or touching.

Cue my overwhelming fear of small spaces.  I have had an MRI before in high school for my shoulder.  Even on Valium I proceeded to pound on the inside of the tube and yell, "GET ME OUT OF HERE!!!"  Klassy, Nicole, real Klassy (yep with a K). 

Megan my awesome CCC scheduled everything for me and she told me if I ever needed anything to call.  Since I do a very similar job to hers I didn't want to be "that patient", but I couldn't help myself.  I called Megan and left her a very awkwardly insane sane message. 

"Hi Megan, it's Nicole.  So, I was thinking of this MRI you are having me do.  About that, I'm really claustrophobic so I was wondering if you could maybe prescribed me something for my anxiety.  Or better yet, I know MRIs are for soft tissue, which is what my breasts are made of, but do you think Dr. DJ could get the same information from a CT scan since the tube is bigger.  Or could you ask Dr. DJ if this is *really* necessary?  Let me know what you think."

Yep completely sane. 

Megan called me back and assured me that this was the best diagnostic tool for me and I would be ok.  She would prescribed me Valium in case I needed it and it was waiting for me right outside the door of where we met with genetics. 

On my way to work I text my PA L to remind her I would be late.  I also told her if she heard any screaming coming from the imaging center that it was me and to please come save me.  No joke, again completely sane. 

I showed up to my appointment nervous as all heck.  I was texting one of my nestie besties (from thenest.com my group of ladies).  She is amazing.  We have been through getting pregnant and child birth and breastfeeding together.  We met roughly about a year ago and have been texting way too much since then.  Any way . . .  I was texting her about how nervous I was when my stupidity hit me.  I gave birth to a child, naturally . . . by choice.  I got this.  I can get into this stupid MRI tube and make it through this.  

Right then the tech came and got me.  We went through everything together and I signed my life away.  With my Valium in my purse I convinced myself I could get through this.   I walked into the exam room and didn't look at the tube.  The tech started my IV for contrast (so those cancer cells would show up better) and got me positioned. 

 (Image from Google Images)

This is kind of what things looked like.  I entered the machine head first.  Once my head was in the massage table head holder (technical term) I closed my eyes and used my natural child birthing techniques while listening to the Dave Ryan in the Morning Show.  Before I knew it, I was pulled out of the machine. 

I did it, without Valium.  With this mindset I felt like I could get through anything. 

The Details

So here is the nitty gritty science of what we have going on. 

My tumor--although I don't like to "own" this--is a invasive ductile carcinoma.  This means the tumor started inside the milk ducts of my right breast and started to invade the outlying breast tissue.  (image: http://www.breastcancer.org/symptoms/types/idc)

Normal breast with invasive ductal carcinoma (IDC) in an enlarged cross-section of the duct Breast profile:
A Ducts
B Lobules
C Dilated section of duct to hold milk
D Nipple
E fat
F pectoralis major muscle
G Chest wall/rib cage
Enlargement
A Normal duct cell
B Ductal cancer cells breaking through the basement membrane.
C Basement membrane

The tumor is a grade II on the Nottingham scale--which as I understand means the cells are just slightly mutated.  This is NOT the stage of my cancer.  As of right now the doctors have not given a stage.  I presume this will come after the surgical pathology. 

The biopsy of the lymph tissue came back negative which is great news.  During surgery Dr. DJ will take a lymph node for pathology to determine more. 

My cancer is estrogen and progesterone postive.  This means the "food" the cancer is using to grow is my hormones.  This is actually a good thing.  This way we know where and how the cancer is growing and there is medicine to stop the hormones so the cancer doesn't have food to eat. 

My tumor is 1.7x1.3x1.5 cm.  Relatively this is a very small tumor even though it feels about the size of a bouncy ball in my chest.  (Another reminder to feel your boobs often ladies and men).

I did also have an MRI scan of both breasts to get a better picture of where the cancer was inhabiting.  I will describe more of the experience in another post.  Dr. DJ told me in the MRI they found another lump of about 7mm.  My ducts were also lined with illuminated cells.  They can't prove or disprove there is cancer here unless they were to do a biopsy, but if either area came back cancerous the right breast would be unconservable. 

At this point I don't know if I will need any additional treatment; whether it be radtiation, chemo, or medicine to help attack my cancer.  We will find out this information after my breast tissue is sent to pathology and checked out under the microscope. 

For more information on pathology reports: http://ww5.komen.org/BreastCancer/ContentsofaPathologyReport.html

As more develops I will update the status of the cancer living inside of me.