Mele Kalikimaka

No I'm not in Hawaii this Christmas, although ringing in the Holidays to the sounds of the waves crashing on the beaches of Maui does sound fabulous! Just a quick post today to wish everyone a very Merry Christmas. I hope the holidays are treating all of you well, and you are able to spend time with your loved ones.

Jon and I are in Northern California with my side of the family. Last night Jon and I spent Christmas Eve with my parents and my sister Kristina and her husband Brad. It was a festive night, and my mom cooked a very delicious organic turkey and her famous potato salad. Tonight we head over to my cousin Suzanne's where our extended family will celebrate Christmas together. It's been a great few days, giving me the opportunity to catch my family up on my experiences and decisions in person, face-to-face.

Not much new news to share. I think the next 2-3 weeks will allow me to finally find peace in the decisions I've made to date. I love the network of Doctors I've chosen, and I'm really confident in my decision to get a double mastectomy. Most recently the thing that's been keeping me up at night is this budding fear of being under the knife for a full 6-8 hours. I've had 2 previous surgeries in my life, both were under 1 hour and I didn't have much time to fret about them. 6-8 hours is a lot more daunting, and I pray my Anesthesiologist keeps a watchful eye on my monitor so there is absolutely no way I will feel or remember anything. I blame those Twilight Zone and The Creep Show shorts I grew up with for putting such horrible and ridiculous fears in my subconscious!

When I have more time I will share a bit more detail on what is going to happen during the surgery, it's actually quite interesting.

But for now I'll close with a Holiday wish to all of you to enjoy your time with your family and friends, and cherish every moment you have with them. Hugs and kisses to all of you.

My IWBF Network

I begin this post at a loss for words on how to express the deep gratitude I feel for all my family and friends who have shown me the outpouring of love I've received over the last few weeks. I've never felt alone, I've never felt abandoned. I've only felt encouragement, support, friendship and love, in ways I hope to return one day when you need it. The text "hugs", the phone check-ins, the e-mails... they mean so much and help me get through the day. Sitting with me in waiting rooms, giving me advice on doctors, connecting me with friends/family who are experts or have gone through similar experiences - it's a generosity that I am so thankful for. When I put myself on the other side, I'm not sure I would have realized the impact these gestures would have on others. I tell you now, they mean the world to me. They are fueling my strength and keeping my spirits high.

Yesterday was a great day for me. I finally have a surgery date. On January 11th I will get a double mastectomy, sentinel lymph node mapping (they remove the first lymph nodes that are closest to my breasts to detect for any cancer spread) and breast reconstruction with tissue expanders put into place. The surgery is expected to take between 6-8 hours, and I look forward to waking up cancer-free. I know it's only the first step in this journey, but it's a major one and I'm restless to get it done. Besides the great news of finally having a date I can plan to, it also acted like a gust of oxygen that lit the fire back in me. Happy to finally have some action items, I've booked solid my next 3 weeks. I've scheduled dental fillings, eye exams and pre-op consultations (the first which I cannot do if I need to start chemotherapy, so I need to squeeze it in now). I've started planning for being out of the office for what could be up to 6 weeks. In all of this, I've also realized how important goals and timelines are for me. As busy as I am, I realize I don't know how not to be. I become paralyzed when I loose control of the situation, when I can't contribute to the next steps. I know this is an "area of development" that will challenge me through this experience. I anticipate a lot of "waiting" and "trusting" that I will have to acquiesce to down the road. Let me give you fair warning now, I have no idea what other personalities are hiding in me that 6 weeks of inactivity may bring out!

After a mad rush of scheduling and prepping, I figured my day couldn't get any better.  But as soon as I walked into the house, Jon rushed me back out the door to meet up with our friends before we all left for the Holidays. I was excited to share the news of my surgery date and catch up before we parted ways. After an hour of catching up (and playing a crazy trivia game at the bar, sans alcohol for me), my friends presented me with something that still brings tears to my eyes. The amount of love that went into this makes me feel so fortunate and blessed. Apparently my friends have been planning something behind my back for the past 2 weeks since they learned about my diagnosis. They took it upon themselves to create a "movement", a "support group", that would champion to be by my side every step of this journey. They created a beautiful logo from the title of this blog and made hundreds of t-shirts emblazoned with the design. They all promised to proudly wear the shirt in support of me, and presented me with more to share with my family, friends and co-workers. They are finding sponsors to create addtional runs, with the goal to donate proceeds to a breast cancer organization who will build the awareness of this horrible epidemic and educate women about prevention and early detection.

To tell you how much this means to me, again I can't even express it in words.

Thank you friends. You are my strength.  I will be fierce!



Me after getting presented with my t-shirt.



The t-shirt design. I WILL BE FIERCE.



Eye of the Hurricane

When I met with my Oncologist around 1 week after diagnosis and told him everything I had researched and learned about breast cancer, and all the advice others had shared with me, he chuckled and told me... "That's what I call the Hurricane Effect". He was referring to the onslaught of information (misguided or not) that a cancer patient immediately gets swept into once the paralysis of the news actually starts to dissipate. The last 2 weeks I definitely felt like a house swept up in the winds of a hurricane, ripped away from the solid foundation I had taken for granted, and swirling around in the sky trying to hold onto something to stabilize myself. This week I think I've landed in the eye...

It's a chilling calmness, too quiet which makes me anxious and impatient. But the only thing I can do is wait.  You see, I've made my decision (note to readers, don't forget my disclaimer a couple posts ago). I've picked my network of doctors whom I love, my "Cancer Network", and I've made up my mind to get a bilateral mastectomy. To increase my chance of not having to get radiation, and to never have to worry about going through what I'm dealing with right now ever again, these are all pros that outweigh every single con I can think of. Now that I've made the decision, I need to wait for a surgery date and there's literally nothing I can do but wait.

If you know me, patience is not my strength. Once I make a decision, I throw myself into it head first and I want immediate action. I want this tumor out of my body, and I want it out now. Every single minute of every single day I feel it, it nags at me and taunts me. What's crazy is that I never felt it until my OBGYN pointed it out, but now (especially after the biopsy), it constantly aches. I can't even sleep a full night without waking up in the middle of the night, my mind racing about what steps I need to take to get it removed.

Right now I believe I will get surgery sometime in the first 3 weeks of January. I'm waiting on schedules. I've checked in with the nurses every single day, but finding a time that works for both my Surgeon and my Plastic Surgeon takes time. To top it off it's the Holidays, so understandably everyone has other things on their mind.

So I wait...

Celebrate The Little Victories

An odd thing about life changing events like the one that turned my world upside down on Dec 3rd - you start to actually understand and learn something from those silly little motto's and nuggets of wisdom that people use in conversations. You find little gems of light that help you cope, help you see things in a different way. I'm proud and blessed that one of these phrases came from Jon, who continues to be my #1 fan and support in what feels like 5 months, instead of only 2 weeks, since diagnosis.

You see, my BRCA results finally came back in, and they're NEGATIVE! That's great news, it means I don't have the mutated gene that basically quadruples my likelihood of getting breast or ovarian cancer in my lifetime. It also means that I have more control of my decisions. I get to choose whether a mastectomy or a lumpectomy is the right choice for me, as long as I factor in all the medical information my Doctors' have been educating me with. When I found out yesterday, my first reaction was to mute my emotions. Perhaps part of my "glass half empty" perspective in life, I've never been very trusting in news that may slap me back in the face later on. Only when I told Jon the news and he looked so happy and excited and said to me, "Niki, celebrate the little victories! This is great news. Be happy!" that I took a deep breath and let myself smile. Perhaps another reason why I married this man, he helps put things in perspective for me.

So, I wanted to share the great news with all of you. One baby step, one baby victory.  May there be many many more in this journey.

The next sound piece of advice that presented itself to me this week was from a Plastic Surgeon whom I met with to explain the cosmetic options available to me during and after my surgery. As I had mentioned in my last post, being able to look in the mirror completely confident in myself is important to me. I don't want to look in the mirror for the rest of my life and see someone who had breast cancer. Although this may be a life changing event in my life, I don't want it to define me. There's so much more to me - all that I have accomplished in my life and my career - those are the things that make me who I am, just as much as this experience. I want to be confident in that person looking back at me, proud of what I've become. When presented with the lumpectomy, unilateral mastectomy or bilateral mastectomy decision, it's one that has taken a significant amount of my thoughts over the last week. The Plastic Surgeon gave me this great advice. She said "Make a decision and try it on for a few days. Live and act like this is what you're going to do, and if it fits, than it's the right decision for you." I'm trying that (although I have to admit I still waiver just to test out my thinking), and I believe I'm getting closer. The decision I'm "trying on" right now is a mastectomy. The unilateral or bilateral pros/cons really just came into clarity yesterday - so I'm holding out on that decision until next week.

To wrap up this post, I have to humbly admit to some minor breakdowns this week. It's been a hard one, decisions need to be made and I feel like I've been cramming for a final exam in Breast Cancer 101. I've been to so many Doctors appointments that Jon and I no longer remember what floor we parked on because they're all beginning to blend together. Jon's also come up with an idea he's convinced he could become a millionaire from (he'll probably get mad at me for sharing this with the rest of you - so DON'T steal it!), where a patient would only have to fill out their Medical History form once and could then go to subsequent Doctor's and just scan it.  That way their patients wouldn't suffer writers cramp from the 10 page thesis they have to fill out every single time they go to a new Doctor. I personally think it's a brilliant idea, I'm tired of those damn forms.

Anyways, Thursday was especially hard for me, I felt deflated and tired. I just wanted to curl into a ball and sleep it all away. I'll share a bit of my breakdown because I think it will make all of you laugh. It actually reminds me of a scene in "The Best Exotic Marigold Hotel" which we recently saw with my In-Laws. I was working from home when I got a call from a telemarketer. She was calling to ask for money for children with cancer. As with most telemarketers, she talked for a good 5 minutes without catching a breath so I wouldn't have a chance to say "no thank you" and hang up. She finally asked me if I'd give some money. I took a deep breath and told her that as much as I'd like to right now, and I feel bad for these children, that I was just diagnosed with cancer myself and was dealing with my own financial issues which I need to attend to (ok, perhaps more information than I needed to share with a random stranger, but what can I say - I was in a fragile place that day). She immediately launched into her auto-pilot response of "I would really like to ask you to reconsider. If you could just put yourself in their position for a moment...". And that's when I snapped. I couldn't believe this woman had the gall to tell me to put myself in their position. That she was on such auto-pilot that she didn't even hear me. I won't tell you what I said to her, but I will tell you it wasn't pleasant. I honestly think I scared this poor woman from ever making another cold call again. For that I am sorry, but I also know you all are probably laughing because you can imagine me screaming profanities at this poor woman who had no idea what she was getting into when she dialed my number that day!  And I do have to thank her for allowing me to vent, I'm sure it saved other potential victims that day.

My Sole and Exclusive Discretion

Working in the Entertainment industry you quickly learn not to put anything in writing.  Although I've never been one to stick to the rules, I have developed a certain radar for when I'm "walking on thin ice".  As I was thinking about my next blog update, my radar went off.  I started thinking, what if I share some news and change my mind?  What if I make a decision and then decide the next day that I actually want to do the opposite?  So, with this in mind, I'm posting the following disclaimer:  By reading this blog you agree that Nicole Butte, in her sole and exclusive discretion, can change her mind and opinion on anything she writes!  Case closed.

Now on to my update.  In my first post I shared how I learned about the news.  Now I'd like to share where I am today, exactly 1 week and almost 2 days from the diagnosis.

I believe I have 2 choices to make on the immediate next step.  Lumpectomy with radiation, or Mastectomy with a small chance of radiation.  The 3rd option, although apparently not one recommended by the last 2 doctors I met with, is Chemotherapy first.  The "X factor" which I have yet to find out is my BRCA Analysis.  If that comes out positive, than the house of cards I've been meticulously building falls, and I believe the Doctors will all push me towards Bilateral Mastectomy.  You see, if I test positive for BRCA, my chances of getting breast cancer a second/third/fourth time basically quadruples (or some crazy stat like that), so they'll want me to be proactive and remove both breasts so that won't happen.  I am not really thinking about that right now, because there's nothing I can do until I get the results.

On to the 2 options I'm currently weighing.  Lumpectomy with radiation is a smaller procedure, an outpatient surgery with a 1-2 week recovery.  Mastectomy could be a 2-6 week recovery, depending on whether I get just one or both breasts removed.  With a lumpectomy I am guaranteed to need radiation, whereas with a mastectomy my chances of needing radiation are much smaller (although I won't find out for sure until after the surgery). The survival rate of both procedures is identical.  

Radiation is needed with a lumpectomy because it kills any extra cancer cells after the surgery, ensuring that everything has been removed.  The problem is that radiation in high doses is not good for a person.  The tumor is in my left breast, which happens to be the side of our bodies where our hearts are. Although the Doctors have told me that the chances of the radiation effecting my heart are unlikely, the fact that they brought it up at all definitely concerns me. 

Now to the cosmetic effects.  If you know me, you know I'm not exactly "well endowed"!  For larger women, a lumpectomy may not be a major cosmetic change.  For smaller women, we have less up top so when you take a little out, it shows a lot more.  I'm young, I live at the beach, I work in Entertainment, I love to shop, I take care of my body.  It's important for me that I will look in the mirror a year from now and be completely satisfied and confident with what I see.  

So that brings me to my decision.  Lumpectomy with radiation, or Mastectomy with a small chance of radiation. Now that I have a good understanding of the medical differences, I'm meeting with Plastic Surgeons to understand the cosmetic differences.  More to come in the coming week(s).

Other than that decision, here's the other things I've learned. Chemotherapy is looking to be more and more likely.  To date I've been told my chances are 95% definite to 90% - 95% definite.  That pretty much sounds like I'm going to need it.  That means I'm going to loose my hair and I'm going to be sick.  Time to start looking for wigs.  I've also learned that I will have to be on a drug called Tamoxifen for up to 10 years.  I need to research it more, but I believe Tamoxifen stops the body from creating Estrogen, which is the hormone that feeds my cancer.  By taking this drug, my body will stop creating the food that my cancer needs to grow.  The side effect is pre-mature menopause. Joy. Hot flashes and night sweats, here I come.

By this time next week I'm crossing my fingers a lot of the above decisions will be made, or at least the options a little clearer!  I'll keep you posted...

My life turned upside down

Hello Friends, so here begins my blog... 

I've been thinking about starting one of these for the past 48 hours. Jon first brought up the idea to me and it was reinforced when I talked to an old sorority sister of mine who recently battled breast cancer and was kind enough to hop on the phone with me to share her personal experiences and hear about my first week battling this horrific diagnosis I'm still trying to comprehend. She told me that she did it because it was so overwhelming to keep her friends and family updated on what was going on. I'm sure it will have the same purpose for me as the weeks continue, but I'm also doing this because I think it will help me cope, it's therapeutic for me to share my feelings and to keep track of everything I'm going to experience over the next year.

I was diagnosed less than a week ago, Monday December 3rd at around 9:30 am to be exact. As I'm sure every woman under the same circumstance expects, I thought I was fine, that I would walk out of my appointment, kiss Jon goodbye and make my way onto the 405 to begin my regular routine of a busy work week. How completely different it all turned out. You see, I had listened to the nurse when she told me that 80% of biopsies turn out fine. I always assumed I would be in that 80%. Perhaps I was slightly concerned, but why worry and think "what if?" if you really can't do anything about it?

To rewind a bit... on November 14th I went in for my yearly well woman exam. Just standard procedure to try to maintain my health. My OBGYN actually found the lump, and ordered an ultrasound and mammogram "just to be safe". Since I have a history of breast cancer in my family (mom & paternal aunt), I knew it was smart to get these things checked. I was actually extremely nervous about the mammogram. I had never had one, and had heard so many stories about how painful it is. It actually wasn't too bad. Certainly not pleasant or comfortable, but nothing to write home about. The ultrasound was next, and that was when I learned I would need to come back for a biopsy. The nurse told me not to worry, that 80% of biopsies turn out to be nothing. I believed her, although I was certainly a bit nervous about having to get a needle inserted into my breast. The biopsy was scheduled for the Thursday after Thanksgiving. My in-laws were in town for Thanksgiving, and luckily the holiday timing kept me busy focusing on the typical things like Thanksgiving menus, black Friday shopping and Christmas lists!

The biopsy itself was also not too bad. They numbed me fairly well, although the sound of them taking the sample was terrifying. I would describe the sound as the shooting of a staple gun, and each time the Doctor would take a sample I would feel the pressure of her pushing the needle and getting ready to pull the trigger. After what I recall as 4 shots of the staple gun (and a conversation between the Nurse and Doctor about how they didn't want to take the sample on the lower part of the lump because I wasn't numbed enough - which basically had me screaming inside from fright) it was over, only to be followed up with another mammogram on the biopsied breast (so now I can officially say I've had TWO mammograms in a matter of weeks). The good news was that I got to take the day off as "ordered by the doctor" and laid on the couch watching the stack of movies that was slowly building up on our shelf.

That brings me back to Monday December 3rd, the day I learned I have breast cancer and less than one week ago.  Damn, what a week it's been.  That first day was hard, although rather foggy and unfocused.  When the Oncologist first told me, then asked me if I had questions, my only question was "Are you sure you're talking about me?".  It was during his non-humorous response of turning my chart around and pointing at my name and saying, "Yes. You are Nicole Butte, right?  6-3-75?" that I remember I started to get lightheaded and my stomach dropped to my feet.  That was also about the moment that this slow haze swept over me.  I knew what I was hearing, I was present, yet I wasn't.  I remember looking over at Jon at one point while the Nurse was talking to us about what I was to expect and thinking he looked rather pale and his eyes seemed rather deep set.  I don't know what he was thinking or feeling, but I know he was sitting right next to me hearing and trying to comprehend the same words that I was listening to.  I also know some how I had enough sense in me to ask some questions, to think everything was going to be fine, that this was just a little diagnosis that I'd get through.  I have to admit, I still partly feel that way, I don't think I've fully processed that I have breast cancer.

This is already becoming a thesis, so I'll try to speed through the rest...

I've been diagnosed with 2 types of breast cancer.  Invasive Ductal Carcinoma Grade 3 and Ductal Carcinoma In-Situ Intermediate.  I am ER and PR positive and HER2 negative.  I have a Ki-67 score of 65%.  My MRI scans which just came back on Friday are thankfully clear according to the Nurse who called me, and I am still waiting on the results from my BRACAnalysis.

I've buried my head in research this past week - from reading books and literature on breast cancer, to meeting with a Surgeon, a Reproductive Doctor, a Cancer Geneticist and an Oncologist.  To add an extra layer of confusion to the whole situation, apparently chemotherapy (if I have to get it, which is likely at this point) will make my chances of getting naturally pregnant very slim (besides the fact that I'm not exactly in my prime child bearing years!).  So our some-what passive attitude about having children all of a sudden got a fire lit from behind it.

So, here's where I am today - exactly 1 week after learning I have breast cancer.

- I have a better understanding of the choices I have to make, some immediate, some to be determined after more tests are taken and results are provided.
- I know I will have a challenging year ahead of me, but that I will be OK when it's all done.
- I know that Breast Cancer Awareness and Prevention has just recruited a life-long advocate in me, and that when I get through this I want to help others get through this.
- I know I have an amazing network of friends and family who will support me through this next chapter in my life.  And that my husband is, and will continue to be, my rock who has already shown me that he will be by my side through every step of this journey.

I will be fierce - I'll kick this cancers ass!  I promise.