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.  :)