The bad update

I received bad news last night. 

When I was first diagnosed, the one thing that the nurse told me was very, very good - was that my cancer is estrogen receptive.  That means they know what makes it grow (estrogen) and they can give me a pill for 5 years post treatment to block my estrogen, helping ensure this won't come back.  My cancer was 80% estrogen receptive, and everyone really focused on that, and how good it was.  It kind of made all the difference...

Unfortunately - "they made a mistake".  When they sent my cancer out to the one lab in the country that does the oncotype tests (on estrogen receptive cancers) they sent it back and said it's not estrogen receptive.  When my clinic got the news, they had pathology re-run it, and it came back as a big ole oops.  Not estrogen receptive. Not anything receptive, actually.


What that means for me is.....I have to stay off the internet.  It's big and scary to read about estrogen receptive breast cancer, but it's bigger and scarier to read about "triple negative" breast cancer, which is what mine is.  They don't know what makes it grow, so they don't know how to stop it.  So that big fun question of whether or not I will need chemo would've never been a question.  I will start chemo by the end of January.  It also means my follow up post treatment will be more intense.  Instead of every six months rotating MRI with mammograms, I will be in every 2-3 months for 3 years.  The other scary deal with this cancer is the chance of distant (in other places in my body) recurrence of cancer is greater, which is why I follow up every 2-3 months. 

I also am at an increased risk of carrying the gene mutation that I wasn't at an increased risk for before. 

So the plan is, I meet with the oncologist on Monday and we discuss how many rounds of chemo, what the chemo cocktail will be, and when it will start.  I will have a port placed in my chest sometime over the next two weeks, and I will have the genetic test.

And I will stay off the internet, and try my hardest to live in today - which is not a skill I've yet to master.

The non-update

The last I posted I had received great news (super duper great news).  Several people asked me if that meant that I don't have to have chemo.  Unfortunately, it doesn't mean that.  I have one more test out there called the oncotype that will give us that answer.  It comes back with a low, intermediate or high number- and based on that result my oncologist will have a better idea of my treatment path.  She has never given me any reason to think I won't have chemo (she didn't actually want to run the test, she wanted me to do it either way) so I'm trying hard not to get my hopes up - but at the same time - I still have a test out there that could tell me I don't have to go through 6 months of chemo!?!  Yah, my hopes might be up a little bit.

Although - I've talked to someone and read many things about people whose onctotype has come back low'ish and they decided not have chemo and still think about it, wondering if they made the right decision.  That's not a fun way to feel either. 

So, I meet with my oncologist the morning of 12/31 and my test should be back by then.  I'm pretty confident I'll know what's next after I meet with her. 

The pain had really decreased over the days, but I was down.  My mind has been spinning and I couldn't stop it.  I'm trying to figure out the magic number that I was going to say yes to the chemo and the magic number that I would say no.  I'm trying to figure out if I want it to come back intermediate so that there's no question, and this decision is just made for me.  If cancer comes back, it comes back mad - and I don't want that hanging over my head.  Part of me wants to make sure I've done everything I can to make sure this never comes back.  But then part of me wants it to be low so I don't have to have chemo. If that number is low and I don't have to have chemo, I have to somehow make myself the kind of person that moves forward with confidence in that decision and doesn't look back. 

So yesterday I went to a beautiful slow flow/restorative yoga. Today I feel like I'm back to myself. Still neurotic, but not spinning.  I'm going to have a range of motion issue with my right arm that I hope yoga will help me through.  I already know it will help me through the mental part.

On another note - I love thank you cards.  They're important to me and I'm typically really good at them.  For example, Elliott - who is 3 - suggested we send a thank you card to the person that made the pizza we had for dinner the other night (don't judge, it's been a rough month).  And it was a frozen pizza (seriously, rough month).  So I'm sorry for everyone I haven't sent a thank you card to.  I feel like you don't mind, but I'm thanking each and everyone of you right now.  For the texts, food, flowers, phone calls, cards, thoughts, etc.  Thank you. 

GREAT NEWS!

I just received the best phone call yet from my clinic:  They took out two lymph nodes and both are perfectly clear!  And, the margins are also negative for cancer, which means I do not have to go back in for more surgery.  AND - they brought the size back down to 2.1 cm instead of 2.5 cm. 

Seriously.  Best phone call ever.

Thanks to everyone for all of your positive messages and thoughts.
xoxoox

Well that's done.

Surgery was yesterday, and everything went well.  I'm down a tumor and a lymph node - and they didn't take out the second lump.  The surgeon said it wasn't atypical and didn't need to be removed.  I don't know how comfortable I am with that, but I'm trying hard to trust the people that are there to take care of me.

I have quite the battle wound where the tumor once lived, and an equally disturbing one in my arm pit (I'm so tempted to post a pic.  If I knew how I might).  I haven't decided what I hate the most - the pain or the pain meds.  I was intubated (breathing tube) during the two hour surgery so I have a sore throat and a phlegmy cough.  I haven't had a phlegmy cough in years. 

It's interesting....I thought I was going to dance a jig and sing "ding dong the witch is dead" when this tumor came out, but instead I've just felt angry.  I feel really angry that I have cancer in the first place, and this surgery means it's real and it's the countdown to the rest of the treatment.  I'm angry that I'm in this much pain.  I'm mad that I had to spend a whole day in the hospital when there's about a thousand other things I want to be doing.  I'm just overall mad at the cancer now.  I hope it feels it.

Surgery Monday!

It's official - I will have surgery Monday morning to get this tumor out of me!  This swear word, swear word, best swear word ever, tumor out of me.  Unfortunately I'll be down a sentinel node from my armpit too - but I'm not going to complain.  Ha!  I'm totally going to complain actually. 

I have to be there at 9:00, they do a bunch of stuff to me for two hours and then surgery at 11:00.  I will be under general anesthesia, it will take an hour and a half or so and then I'm in recovery for a couple of hours.  I should (fingers crossed) be home in a general anesthesia fog by dinner time.

The pre-admissions nurse talked to me yesterday about the whole process.  I explained that I will have an entourage with me, and she explained that the first hour after I wake up I can't have company but then I can see people two at a time.  Scott, Erin and my mom will be with me - and I get the giggles picturing the conversation my mom will have with the nursing staff about this two person rule. 

She asked if I've ever had general anesthesia before, and I said I did when I got all of my wisdom teeth out.  She asked how I did - and I said that I did great - except that when I woke up I started bawling and needed to find my mom.  When I did find her I sat on her lap crying.  I was 18.  She said that was perfectly normal - I think she was being nice!  :)

Anyway, after they take the swear word tumor out, they take it to pathology and run a bunch of tests on it, measure it, etc.  I should get those results, and my lymph node results, by Friday. 

This weekend I will have a date with some of the lovely ladies in my life. 

We are meeting for breakfast at Ecopolitan - an organic raw restaurant in Minneapolis.  After breakfast, my sister, who now has a family "history" of breast cancer but is scared to death of mammograms because she is a total and complete hippie but is afraid my mom will hurt her if she doesn't start doing some sort of screening, will be getting a thermography - at Ecopolitan, the hippie restaurant we're going to (it may be done in a flowered bus in front of the restaurant).  Thermography is an alternative mammogram - no bad rays (or vibes, man) - just heat.  There will be pictures taken. 

Then we go wig shopping.  There's a salon by us that is owned by a breast cancer survivor.  We'll shop, get my head measured (we'll finally see where my kids get their big heads!  Oh, that was funny until I realized I'm going to have one big bald head) and narrow down some choices to bring my babies back to help me make a decision.  And more pictures will be taken....

Final decision - for now.

I had said that if my biopsy from my left breast comes back positive for cancer, I was having a double mastectomy.  If it comes back negative, I was having a lumpectomy.  Well, it came back as not cancer.  Yay!

Except.

They don't like it and they want it out too.  It's called an intraductal papilloma, which in itself isn't super scary, but in combination with having current cancer in the other breast - they'd rather it not be there.  There's a small percentage of these that give false negatives in the biopsies, and when they remove them they actually show pre-cancerous cells.  So they will remove it also, and send to pathology to see if there are any cancer cells.  Since I'm already having chemo regardless, I'm not sure what will change if it is positive for cancer; maybe radiation on that breast also??

So, I went forward with scheduling the lumpectomy (probably will be 12/10) but it will actually be a double lumpectomy - and they will be removing one or two of my sentinel lymph nodes at the same time to send for a biopsy. 

Now, I schedule a hair cut and hopefully have enough to donate to a cancer patient (I seriously think that's ironic).  I have a lot of hair right now and I think losing this amount of hair is going to be a lot harder than if I just cut a lot off first.  Plus, it might be easier for all of us if I do this in baby steps......

The beauty

There's no way for me to tell this story (even for my own memory/journal) without explaining the beauty too.

I have chosen to surround myself with amazing people, and I knew that before I was diagnosed with cancer.  I have friends that I haven't seen for years and years, but we've stayed in each others lives because there is a deep connection.  I have a relationship with my family that has always been close and even envied by friends.  I have co-workers and a boss that are going to be with me and flexible through this entire journey.  My friends are unbelievable. And I'm in love with my neighbors.

The amount of support I've received is too much to list.  And it's not the list that matters, it's the people.  Once I got through the initial hyperventilating and crying over the scariness of this disease, it's the kindness of people that continually bring me to tears.  It's not just my friends and family - it's friends of friends, moms of friends, neighbors of friends, and even a complete stranger that is allowing me to text her constantly with questions, since she's my age and just went through this. 

Even Scott and I are growing in a way that may only be possible when you go through a tragedy.  We stop and hug more, we fall asleep holding hands.  He's stepping up with the kids when I can't focus, and he's providing a sense of normalcy in the house that I'm simply not able to provide right now.  I am still doing all of the laundry though.  :)

Melissa

The day I before I went in for my biopsy - my sister in law was diagnosed with breast cancer.  Invasive Ductal Carcinoma (sound familiar?).  I remember laying in my bed talking with her about her diagnosis and shaking, for so many reasons.  The most obvious being - my sister in law has breast cancer.  Scott's sister has breast cancer.  How is she going to do this?  I am too far away from her, and I hate that.  And she sounded so good and strong and I couldn't comprehend sounding that good and strong talking about being diagnosed with breast cancer.

And she talked to me about the biopsy and about how everything would be fine.  And I said to her, so specifically - I'm not worried about mine.  Mine is different, it's not cancer.  I don't know why they're making me do the biopsy - but it's not cancer because it's more like a bump.  And then I thought how hard this is going to be, because she's going to go through this and I'm going to feel....oddly guilty (not really the right word, but I don't know what is) because her biopsy came back cancerous and mine isn't going to.

I said to Scott, as soon as your sister is all healed and better - do you think it would be funny for me to thank her for taking one for the team?  Because the chances of us both being diagnosed with breast cancer in the same week are.....0 to nothing. 

Turns out, instead of taking one for the team - we'll be a team and get through this together. 

Here's where we are today

Okay, so here's where we are today.

I will have chemo - no matter what. 

The MRI came back with mixed results.  They do not think the cancer is in my lymph nodes (party time), but it is also bigger than they thought and they also found a concerning something in my left breask (aka Maybe Not So Much The Good One). 

So I go in tomorrow for three appointments. 

First - I have to have an ultrasound on the concerning lump on the other side.  If they can't find it with the ultrasound (to do an ultrasound guided biopsy) I will have to go back next Tuesday to have an MRI guided biopsy.  If they can find it tomorrow, they'll look at it and may be able to say it's nothing, just from the ultrasound.  If they don't like what they see, I get another biopsy tomorrow. 

After that appointment, I go see a genetic counselor to see if I'm predisposed to getting cancer.  (Ummm..?) 
I think it's actually to see if I'm predisoposed to getting reproductive type cancer, because we may have to talk about a hysterectomy during my breast surgery.  They doctor says she has NO reason to think this is going to be the case, but they're going to do the test.

After THAT appointment, I meet with the surgeon.  We'll talk about surgery options, although I'm pretty sure I'll have a mastectomy on the right side.  The left side is now the wild card, which unfortunately we won't know the results on by the appointment tomorrow - unless there's no biopsy that needs to be done because the ultrasound says it's fine.

They'd like me to have surgery within the next week or so, then I rest for 4 weeks and then I start chemo for 5 - 6 months. 

If I get a lumpectomy (just removing the cancer and surrounding area) I would also then have radiation.  I'm not thinking that's the route I'll go, but I will know more hopefully tomorrow.

MRI

I had an MRI the day before yesterday.  The MRI was to get a better look and measurement of the tumor itself, look at my lymph nodes, and to make sure my left breast (aka The Good One) was clear, and that there were no more lumps in my right breast.  That's was an experience in itself. 

It was at the University of Minnesota (where all my treatment has been) and luckily they gave me a valium first (claustrophobic) because my mom drove me there.  Holy hell.  She takes corners on two wheels.

And we got lost finding the MRI area after we parked.  So the valium is kicking in, we're wandering the University lost and it's 5:00 at night, after a day from hell.  At least I was with my mom.

They put an IV in me, gave me a pair of scrub pants to wear, a scrub shirt to open in the front and then another one to open in the back.  I laid on my tummy, face down in a massage type face holder (too bad the rest wasn't similar to a massage) and placed my boobs in open slats, so I'm hanging out the bottom.  Awesome. 

When they inserted the contrast into my IV my veins were instantly filled with ice cold fluid.  Apparently they do this because the contrast shows the cancer better?

It was loud, it took 30 minutes or so - and I had to continue counting in my head to get through it.  I kept saying if you panic, they start over.  If you panic, they start over.  So I didn't panic and they didn't start over.

After it was over, a man got me out.  This was a much different experience from the woman who put me in.  He went to take off my headphones and ripped some hair out.  They had tied my hair back in a sticky gauze type holder, which he couldn't get out.  He was uncomfortable and I was tired and wanted my mom.  I came around the corner to where she was waiting, and I will never forget her expression.

She slapped her hand over her mouth, her eyes got big and she laughed so hard she turned red.  She said I have never seen you look so ugly - ever.  I told her she was inappropriate. 

I had massage face, half my hair was pulled back in a sticky gauze, some of it was sticking up from where the man ripped it out, and had mascara under my eyes from being face planted after crying.  Still - inappropriate.

The diagnosis

Monday I received several MyChart (online health record) messages about the biopsy itself.  I knew exactly what they were, but played dumb and used them as an excuse to call the clinic.  "So, I just received all these MyChart messages and I'm not sure what they are - does something in here tell me the results of my biopsy?"  That way someone was forced to pull up my chart and look.  Hehehehe.

Unfortunately they weren't in, that would've been a much better day since I wasn't at work.

The next day - Tuesday 11/20 - I was just about to start a meeting.  I had literally just said "okay - let's get started" when my phone rang.  I apologized, went to my desk and was told I had cancer. 

I hung up and clearly lost my mind. 

Luckily my friend and co-worker Katie knew I was waiting for the call and came over and helped me.  I called my sister (said nothing, although I'm pretty sure I tried).  She came to work to pick me up.

As I was leaving, I saw the people that I had left waiting for the meeting to start, in the same place waiting for the meeting to start.  That kind of makes me laugh now.

I called the nurse after I calmed down and was told that I have Invasive Ductal Carcinoma in my right breast.  Stage 2.  The grade (which means how active those little f*ckers are) is a 3 - which is the opposite of what I'd like.  It means they're active and aggressive.  I would've preferred sleepy little lazy cancer cells.

The next few days were filled with a pain I honestly didn't know existed.  I've never in my life (because I've had a nearly perfect life) ever cried the way I cried.  It was animalistic.  I hyperventilated several times.  The only word I could hear was cancer.  People die from cancer.  I have breast cancer.  I kept seeing my boys faces and would hyperventilate again.  I hurt like I've never hurt before, and I was absolutely and completely shocked.  I got mad.  SO MAD.  This is crazy. I'm not supposed to have cancer.  Then I went home and hyperventilated some more (there's a pattern).  At one point, the one night Scott wasn't with me - I watched a movie in bed.  And I felt good.  And the movie ended and I felt like someone kicked my in my stomach.  I screamed and cried and kicked and I needed...something.  I needed to get out of my skin.  I wanted the cancer out of me and I didn't know what to do with my body.  I wanted to go to the ER and tell them to get it out of me.  That night was the worse night I've had.

My OB/GYN called and told me she called in Ativan for me (I told you I adored her), my sister made a "kick cancer's ass" diet for me, my mom picked up a book from the bookstore on how to beat this, and our journey started.

Biopsy

So - Erin and I went and had the biopsy one week later.  Okay, well she didn't have the biopsy but she was there.

The nurse was gruff and I was gruff back, and then the Interventional Radiologist came in to do the procedure and she was wonderful.  She numbed the area and then took a needle about the size of a piece of pasta (thanks Erin for the analogy - I didn't look).  The radiologist watches the ultrasound machine and guides the needle into the lump and then SNAP, vacuums out a piece of the lump.  Several times.  It didn't hurt and I was really pretty fine during the whole thing.

Then they place a little clip (I've been tagged!) on the lump for future views. 

The finish the procedure, apply an obscene amount of pressure on it using two hands and her body weight to make sure I don't bleed, steri-strip and I'm done.

Except - I have to go have a mammogram AFTER the biopsy to make sure the clip is in the right place.  I started to faint during the mammogram (blood sugar?) so I cause a bit of commotion and get some juice, and then we leave.

This happened on Friday - the results take 3-4 business days - which would've put me right up to Thanksgiving. 

Over the weekend I was appropriately nervous, but I kind of still in my gut know it's not cancer.  During the biopsy there was a bit of fluid that came out - and I knew enough to know that that meant it was some kind of cyst.....or not. 

The first days

I emailed my OB/GYN and said I have a bump, not a lump.  I've had it for 6 weeks or so, and it didn't go away, even though I expected it to.  Do you want me to come in, even though it's just a bump?  It might even be a rib.  If you don't need me to come in just let me know.  And of course she told me to come in.

She walked in the examine room, laughed out loud and said "So you have a bump not a lump"? And I said yes.  She felt it, asked some questions, scrunched up her face and said I think you should go have a mammogram.  I was shocked.  Truly shocked.

So I went to have a mammogram and Erin came with, which I thought was crazy.  I had the mammogram, which hurt (because, I've learned, I have extremely dense breast tissue.  Yah, that's right - breastfed two babies back to back for 10 months each and I have extremely dense breast tissue). 

After the mammogram they sent me right to the ultrasound.  The ultrasound tech found it and got the doctor.  The doctor looked at it and said "This is not a simple cyst and it needs to be biopsied".  And my whole body started tingling.  I was shocked that I needed a mammogram, and now they're telling me I need a biopsy.  A few minutes later another doctor walked in, asked the tech to bring back up the lump (yes, it's a lump at this point) and said to me with such eloquence:  "You found that thing?  It needs to be biopsied."  And left the room.  Grrrr.....

So they scheduled the biopsy for a week later - I walked out to the waiting room where Erin was and started crying.  Now I'm scared.

Bump, not a lump

I felt a bump. 

I'm not an expert breast examiner, and I wasn't doing my morning shower examination (because I don't do that).  I was putting lotion on and felt a bump.  So I ignored it, because it was a bump and not a lump.

A couple of weeks later when it hadn't gone away - I pinged a friend and said...so here's the thing.  I've got this bump, and it's not a lump, but it's on my breast and I figured it would go away by now and it hasn't.  Should I get it checked?  Even though I know it's nothing, because it's not a lump, should I still go in?  I'm not a doctor, so I don't KNOW it's nothing, but I also kind of know it's nothing.  Poor Kristin, these are literally the instant messages she gets from me.

She of course said yes, go get it checked.  And I of course didn't, because it was a bump and not a lump.

A couple of weeks later Erin came to my house.  And I said do you want to feel my lump that's not a lump, but a bump?  And she said yes.  She felt my boob, pulled her hand back like she'd been electrocted and said yes - go get it checked.  So I did.

Here are the reasons in all honesty that I waited, and really I only waited 6 or 7 weeks:

1.  It was high on my boob, 8 cm's from my nipple.
2.  It was hard, and big. (It made sense to me why that meant I wouldn't need to get it checked right away, it sounds funny in writing now). 
3.  It did sometimes hurt, and everything I read said "cancer doesn't hurt".
4.  It was too obvious.  There was no hunting involved, and breast cancer is something you're supposed to have to search for.
5.  I have no history of breast cancer in my family.

So, what I've learned is that it doesn't matter where it is, how big it is, if it hurts or not and if it's hidden or holding a big sign that says "I'M A BUMP NOT A LUMP", you should probably get it checked.