a HUGE thanks!

I just wanted to take a moment to thank everyone that has emailed, sent messages, commented on this blog, and sent cards to me.  I feel SO loved and supported.  I even dare say that I feel lucky.  All of you have already made this ordeal so much easier to bear, and I know you will keep me going when I need the help.  And just in case I don't reply to everyone- know that I still read and enjoyed your words of encouragement!

Things I wonder about

We were in Macy's and I saw some really cute shirts that I thought would look nice on me.  Then I remembered that I can't really shop for anything-  Truth is, I need to shop for some clothes, but I don't know what.  I have form fitting tops, v-neck tops, shaped tops...I can't wear any of those afterward- I guess I need to look at big ugly tshirts? I have no idea?  Or maybe a button up top will make it less obvious?  Wait a minute, maybe they will give me a bra that has a fake boob in it? 
Then I was thinking about my hair.  I am going to get it trimmed next week so that it looks really nice.  Then I am also going to color it again.  I am going to have fabulous hair until I don't.  And then there are more things to wonder about: wigs, scarves, boldly going bald....so many options.  I think I will want 1 nice wig at least- but I am not sure how it will work out.  I am very sensitive to things that don't feel good, especially itchy or tight.  But then again- I will go to great lengths for vanity.  Someone suggested a tattoo on my head.  Really, I think that is SO awesome!  I brought the idea up to Jim today and he thought a big dragon would be cool.  I think a big arrow would be nice- like Ang on The Last Airbender.  How cool would that be?  Well, unless they made the arrow too far onto my forehead and when my hair grew back there was only this odd little arrow point sticking out.  It would be really cool to have a tattoo on my head though, but I am pretty sure I couldn't do it.   
And while we are talking about tattoos- the last part of breast reconstruction is putting new nipples and areolas on.  Then they tattoo the areola to make it the right color.  A friend suggested I get glow in the dark ink put in there.  ahahahahahaha- that would be fun!

It's been a really long week!

I can't believe how slow time is moving along.  I am still waiting to hear from the oncologist.  I *think* that I will feel a lot better after talking to her, and get a better idea of the general timeline of everything.  At first I seemed okay with waiting a month for surgery...then the lump started hurting again.  So of course then I started wondering' ohh shit, can I actually feel it growing?  I am pretty sure it IS growing.  Growing and spreading.  It will probably be in my brain in another month!'  See- I really need an appt with the oncologist so she can talk me down.  But now it is friday and I know I won't hear from anyone until at least monday- booo!  So I went in search of answers on Google.  There were tons and tons of posts on different forums with women freaking out about the exact same issue.  It turns out that 4-6 weeks is a completely normal amount of time to have to wait- even for aggressive breast cancers, especially if reconstruction is going to be done- because the breast surgeon and the plastic surgeon will both have to be there at the same time.  Then it is usually 4 weeks after surgery before chemo starts.  There certainly is no- hurry up and get this done attitude going on apparently.
Jim and I have decided for sure on a unilateral mastectomy.  Possibly bilateral- we will wait and see.   My feeling is that if I am going to be horribly deformed after this, I may as well really go for it, and have less risk for recurrance while I am at it.
My MRI is scheduled for next week- I am not sure whether it will actually occur or not, because if they are chopping off my boob then no need to look for more tumors in it... however- they might find something on the other side that the mammogram missed.  That is up to the surgeon I guess.  Then, I also see the genetic counselor next week.  I have to fill out this insanely long survey, in which I have to figure out exactly how many months I breastfed: 46, Exactly how many years I was on birth control- uhhhh not even sure about that one but I made up something somewhat close....I think.  And how many months of fertility treatments....jeez- I didn't ever think to keep track of all that stuff!  Then a complete family history of all the things medically wrong with any and all family members.  All of this to determine if I could possibly have the breast cancer gene.  Well, really the only question they really have to ask is do you know both sides of your family? no? okay- lets test you!    Ohhh, but it gets even better.  After I finish the survery, I go in and meet with a genetic counselor at the same time that i get my blood test for this gene.  The genetic counselor will then talk to me about the possibilities and my 'options'.  WTF?  I am not pregnant with a baby that I may or may not abort.  I just need the blood test, and the results.  I don't need 'counseling' on my options!

Finally feeling a little peaceful

The surgeon had such a wonderful way of making me feel okay with all of this.  I am sure this peaceful feeling will be short lived, but for now I am enjoying it.  I am sort of excited that I have a whole month- to get whatever done that I need to get done since I know I won't feel like it afterward! 
After talking to Jim more, I really think we are leaning toward at least a unilateral mastectomy.  It drops the chance of reoccurance down a pretty big amount, I think.  Depending on what the genetics test say and the oncologysts opinion- we may still do a double mastectomy. 
I talked to the kids a little this morning, and told them that after surgery (haven't gone into specifics there) that I will take a medicine that will make me really tired, and maybe kind of sick, and will make my hair fall out.  I said maybe I will get a wig- Sloane is THRILLED with that idea because maybe I will get a PINK wig.  LMAO.  It really makes her quite happy to think of me with pink hair.  Cameron just giggled at the thought of a really really bald head, and when I said that sometimes it grows back in different than before, he decided that it needs to grow in WHITE.  Like a really old grandma.  This gave him a laughing fit.  I am really so glad the kids are having some fun with this.  Ethan didn't really have much to say- he is still stuck on 'mom has cancer'

Surgeon consult- we get choices!

I am not really sure what to think about my appointment with the surgeon.  Only because it left me to make some decisions that I really need to think about.   I LOVED the surgeon.  She was kind, personable, calm, and very helpful.  She explained things to us tons of times until we understood what she meant.  I am so excited that she will be my surgeon.  I was also excited because everyone else that I have dealt with in this process so far has been kind of gloomy- ohhh you have a bad prognosis.   poor poor you.  Nope, not Dr. Chow.  She felt very positive, and although she did confirm that it was a very aggressive type, that we can beat this. 
The timeline looks like this: 
Surgery the first of August (apparently even aggressive cancer isn't going to grow too much in one month)
After surgery, I will start chemo + herceptin.  The chemo will last 5 or 6 months.  Some people get 'special' chemo that doesn't have bad side effects, like hair falling out.  I don't get 'special' chemo.  I get the regular stuff- for half of an entire year.  That is a long time to be bald.  After that 5-6 month period, I will continue taking Herceptin for another year, I think she said- not a biggie, it does not have many side effects.
After chemo is finished I will do radiation for 6-7 weeks 5 days a week*IF* I opt for a lumpectomy vs mastectomy.

So now the tricky part.  She said I am a very good candidate for a lumpectomy. The incision would be right along the top part of my breast, and they would take out a chunk.
A lumpectomy will give me a 10-12%  chance for cancer coming back.
a mastectomy would give me a 3-5% chance.
She said that while I would have a higher chance for getting cancer again, my survival chances did not change any, even if I got cancer again.   sooooooo what do I do with THAT information? ack.
Honestly, I am still leaning toward mastectomy- at least in my right breast but it just isn't as set in stone as I thought it was.
The next step is an MRI to determine if any other lumps are anywhere else on the breasts that the other scans are not showing.  That should be done by next week.  Also, I will get getting a genetic test done to see if I carry the gene for it.  It isn't on my moms side, but may be on my dads.  The importance for getting this test will be possibly for a double mastectomy as well as having my ovaries removed.  Apparently if you test positive for this gene, you are at very high risk of also getting ovarian cancer. boooo!  But at least those tests are painless and quick.
Jim and I have decided to wait and see what the medical oncologyst says when I meet with her.  Maybe she will sway our decision one way or the other.    After that, we need to hurry and make a decision because if it is mastectomy then we need to get everything scheduled for the plastic surgeon to be in surgery same time as oncology breast surgeon. 
Any thoughts on this are welcome :)

a good but nervewracking day

today is good so far. I am pretty calm, and I am not obsessing with thoughts of me dying and leaving Jim to raise 3 kids.  Just preparing myself for all the stuff that might be said today during my appt.  I am okay with a mastectomy.  Only if I get new boobs immediately.  I am not okay with being boobless.  It is one thing I can not make myself be okay with.  I am okay with chemo too.  And the thought of being bald makes we want to scream but I will work with it.  Please just don't let me wake up boobless.   I asked my daughter last night what she would think if I cut all my hair off just like her brother Cameron.  She said- that would not be good.  I would laugh at you if you cut your hair off, just like I laughted at Cammy.  LOL!  I love her honesty.
4 hours.

Prognostic Factor Panel

today, the rest of my labwork came in.  This is the part that tells them what drugs they can use, and how effective they will be.
Everything that would be 'good' to have I do not have.
Everything that is 'bad' to have, I have strongly.  It said I have unfavorable prognostic factors.
The only positive here, is that I am HER2+.  That is just another indicator that this is a very very fast growing cancer, BUT there is a specific drug targeted specifically to kill these cancer cells.  it is Herceptin. 
What I think all of this means is that I am at a much higher risk for cancer in the future.  As well as being at risk for it having already spread.  If we really caught this early then hopefully the mastectomy will take care of many of those risks.  I am pretty sure though, that this means I will be doing chemo.
My surgeon appt is tomorrow.  I think that we will decide whether to start chemo before surgery or after. 
My appointment is in 22 hours.  I have no idea how I am going to make it though those hours without losing my mind. 
Luckily- after totally losing it in from of Jim, he was very firm and gentle and strong when he told me that I am NOT going to die, and this will all be okay.  I love him.

The kids

The one thing that worries me more than anything in the entire world is dying before my babies are grown.  You hear horror stories about kids that lose their mom- after watching her struggle much too long and being very sick.  Those kids can never get rid of those terrible images.  We don't live very close to any family either so the thought of leaving them is very scary.  But enough of that. 
It is also scary to tell them that I am sick.  I knew I needed to.  I was crying all the time and people were calling, we were going to be seeing alot of doctors..
I told them all seperately- The first thing Ethan asked, is if I was going to die.  ugh!  NO!!! Not an option at all- It just means another surgery (they are used to that at this point), and alot of doctor appts, and I will probably cry alot.  I also told him that I may need a medicine that could make my hair fall out.  Ethan said he doesn't want my hair to fall out.   I love that boy!  He hasn't said a whole lot, but we are trying our best to keep him informed, yet not totally terrified.
Cameron- thankfully, I think it all went right over his head.  He heard- more surgery, and a crying mommy.  Okay!  We will talk about it more later but for now, that is good.
Sloane- all she knows is that mommy has a booboo on her boob.

Jim

Jim has always been my rock.  He is amazing and strong.  And sometimes when he should cry he doesn't.  Instead he gets kind of grumpy.  Finally, over the weekend, I asked him how he was doing because he was not freaking out yet.  He told me 'I am specially trained to be able to calmly handle extremely stressful situations' LMAO!!!! I mean really, I was laughing HARD!  Yes Jim you were- but NONE of those situations ever included you wife having breast cancer.  Or having her boobs chopped off.  Nothing prepares you for this.  Nothing.  But he is talking to me about it, and I think he is at least sort of dealing with it.  I hope that he is, but I worry about him.

pathology report

I picked up my mammogram on friday so that I could take it with me to the surgeon appt on Tuesday.    It had the pathology report with it.  Finally- answers!  I opened it up and the first thing I read was Ductal Carcinoma In Situ.  YES!!! that is really good news!  It is non invasive, and no chemo is required. Yes!  I start crying- alot.  I am so happy!  I send a text message to my mom and a few friends- non invasive!!!! After a few minutes of looking the report over more closely, I realize that I have misunderstood it.  Yes, I do have Ductral Carcinoma In Situ (DCIS), but they also found Invasive Ductal Carcinoma (IDC).  ohhhhhh.  Now- the good news is that in the many MANY samples that they took that day (around 16) only ONE of those samples contained the 'bad' cancer.  Well, that sucks.  I decide that maybe I have made my moms day a little better by telling her it was non invasive, therefore, I decide not to tell her otherwise, not for now.  Not until I know more.
Jim and I went out friday night to celebrate a neighbor's birthday.  It was alot of fun- and much needed.  I got very very very drunk!

What I want

What I want really is to not be doing any of this.  But I am, and big life changing decisions need to be made, quickly.  It was relatively easy to decide I want a double mastectomy.  I am too young for this disease, so I sure as hell am not going to let it get me again.  That was until I realized they take your nipples. OMG- they TAKE your NIPPLES! OFF!  Well, then I found that there is a procedure called nipple sparing- they retain as much skin as possible, and they reattach the nipple, after scraping off all the insides... Okay, I think. I can still do this.  As long as I don't end up a nipple-less freak, I will be okay. Then on Thursday, the breast health navigator calls me to check in- she calls everyone that gets diagnosed with breast cancer at that hospital.  She informs me that very few doctors are willing to do nipple sparing.  This really pisses me off.  I am grumpy most of the rest of the day.
Then that night I find some pictures online of nipples made from tissue from the abdomen.  They don't look freaky- they look normal.  I start to feel more okay with it, and then on Friday, I show Jim the pictures- we go 'nipple shopping' online...! LOL!  We find some and talk about it, and I think we are both okay with that right now.
At this point I am SO glad that my appt is on tuesday because if it were further out, I would lose my mind.  I spend hours and hours every day doing massive amounts of research.  It's the only way I can feel 'in control' in this crazy situation.  So yes, to feel more sane, my husband and I go nipple shopping on the internet. :)  Of course, at this point, we dont even have any idea what the surgeon will say or when she will want to do surgery.  I am truly hoping though that we can just lop both the girls off and that we can do immediate reconstruction and I will wake up from surgery with brand new boobs! We will see.

diagnosis: breast cancer

Dr. Malone called me back at about 1:30 on June 20.  I will always remember June 20.  I could tell right away, she did NOT want to say it, I could hear the pain in her voice.  The biopsy confirms that you have cancer. Ductal Carcinoma is what it was.  The most common kind of breast cancer.  She then gave me the names of a couple of surgeons (which we had previously discussed) and gave me the number for Dr. Chow.  She told me to schedule an appt with the surgeon, and then we would go from there.  I had received the recommendation of Dr. Chow from someone else- a woman that I found on a breast cancer online group.  When I talked to Dr. Malone about Dr. Chow she couldn't say enough good things about Dr. Chow, but that she was very busy and hard to get into.  I would not be able to do better than Dr. Chow.   At least I had a path to follow, or well- at least I knew the next step on my path. 
After hanging up the phone, I locked myself in the bathroom, sat on the floor and sobbed.  Then after a few minutes, I wiped my tears and sent out a mass text to most of my family and friends.  The message that would ruin everyones day.  Then, I went to my home phone and unplugged it.  It was hard enough to send a message on a phone, but I couldn't bear to hear people crying.  Crying for me.  Then I put on my happy face and really tried to enjoy the day.  I need to enjoy my children and have fun with them before the ground falls out from underneath us.

biopsy

Today was biopsy day.  Dr. Malone was there- she is the same doctor that did my ultrasound on friday.  She is very nice and comforting, and also very honest.  I know that they 'technically' cant tell you anything and from an ultrasound it may not be at all what is actually going on- only pathology will tell for sure.  I asked her though what she felt was going on with my lump.   She hesitated, then said "Can you handle bad news?"  Well sure I said! Ha!   She told me that based on the characteristics of my lump, that she was really quite sure it was cancer because the things that she saw in that mass are things that just aren't seen in non cancerous masses.  I did not cry though.  I stayed calm as she numbed my breast with an entire bottle of novicane, then watched the ultrasound screen as she repetedly shoved a 10guage needle into my breast about 15 times.  Sounds terrible but really I only felt a weird sensation- no pain at all.  Afterward, the placed a tiny metal clip inside the tumor so that they know where it is, and know that is the lump that was tested. I got a mammogram afterward to make sure that the clip was in the right place, and it was.  Dr. Malone told me that she would call with my results some time on Wednesday.
Then I left, got in the car, and that is when I lost it.  I couldn't breathe at all- some sort of hysterical panic attack.  How could this be me?  HOW?  All added up I breastfed for 4 YEARS!!! That means I can't have breast cancer.  I can't.  I calmed down enough to drive home.  Every few minutes though I would burst into tears.  I was so scared.

a lump

My story started about 3 week ago.  I noticed breast pain on my right side, and when feeling around I felt a very obvious hard lump.  It felt like maybe an infection in my milk duct but I never saw any redness and never had a fever.   I was definately concerned but I had a pap smear already scheduled in 2 weeks.  I thought about coming in sooner, but everything I read said that anything 'bad' doesn't usually hurt.  I figured I would just be paranoid like usual for a couple of weeks, then go in and find out that I was overreacting and that it was nothing serious.  THAT is what I thought would happen.  Damn it, I wish that is the way it turned out.
Thursday June 14- I went to my gynecologist and he said he thought it was just a cyst, but sent me for a mammogram to make sure.   Ahhh- the lovely boobie pancake machine!
June 15- They were able to get me in really quickly!  When I first got to the breast center I sort of freaked out.  The breast center is inside the Cancer building.  Yes, it makes sense, but it didn't makie me feel better- that's for sure. The mammogram noted something suspicious, so the dr at the breast center did an ultrasound.  It was definately suspicious- not round (bad) more tall that wide (double bad), and not fluid filled (bad).  She wants me to come back in for a biopsy.  They don't want to do it right then because it is friday, and pathology likes to do things a certain way and weekends mess them up.  At this point- I am still holding it together.  there are lots of things that can happen in breast tissue that may need to come out, but aren't always cancer.  
After my ultrasound, the nurse that did my mammogram sat me down to explain the biopsy and to schedule it.  In the middle of this- she gets all choked up and teary eyed!  I was like OMG what WHAT are you doing??? I was holding it together up till that point.  Then I had a very very bad feeling.  She knew something.  At that point, I think I knew.  We were able to schedule my biopsy for the next monday.
I went home and did massive amounts of research.  It's the only thing I could do, and the only thing I could think about.  If you know me, you know I like to diagnose myself and even come up with my own treatments. LOL!  And yes, I am usually right, and very good at it.  I researched pictures of breasts- the inner workings of them.  I decided that *if* it was cancer, it would be Ductal Carcinoma (hopefully In Situ).  So I went to Jim with my diagnosis.  He laughted at me because I was being crazy as usual.  That's okay- I knew I was being crazy.  I know nothing about cancer.  I have never wanted to know anything about it.  Especially breast cancer- after all, I had NO risk factors,  I had all my babies young, and I breast fed.  In fact I breast fed for 4 years total.  That pretty much makes my boobs immune to *bad stuff* right?

The beginning

I have decided to blog my breast cancer story.  Since this crazy ordeal began I have felt like it was so crazy, it was like a story.  Like this couldn't possibly be real.  I just kept thinking- I should write about this because it is just too crazy to real.   I also want to write because I think sometimes it is going to be hard to talk to people face to face, or on the phone.  I see their pain and I hear it in their voices.  This is so hard because then I want to be strong for THEM.  I can't think of anyone else right now though because I need to do whatever I can to keep myself strong and healthy.  Another reason I am writing is because I will kick this thing, and then this story is going to help someone else.  Someone else that is freaking out and scared to death.  I know it will be helpful because it is other peoples stories that are helping me right now.  Sometimes they are scary stories but they are real.  I need real- not sugar coating.  This blog is not going to be pretty.  It is going to be ugly and scary and real- because right now that IS my life- ugly and scary, and so very real.