My D (decision) Day and My second consult

After initially finding the lump - going through the Mammogram, the Sonogram, the needle and tissue biopsies and follow up appointments to each - it had been almost two months.

All I knew was, I had Breast Cancer. Not the Breast Cancer type, not the stage the Cancer was in, what the treatment plan for me would be. And by now, the wait was making me crazy. How do you plan for this, was what I was thinking. This is a joke, was another. How do you move forward? It was like someone telling you, 'hey, we got some news back from the lab and, well, bad news for you, you're not looking too good and can die sooner', then has the audacity to tell you to make an appointment 4-6 weeks out to find out more and quickly leaves the room through an escape pod. What? Are they all crazy? Just reliving to tell this tale, makes me want to beat on something, hard... very hard, like the printer in that office movie. Screaming out loud in the middle of a field somewhere. Sadly, over this journey, I have Pink Sisters who have shared their stories with me. As you read this, you too may already know, this is often a very harsh but truism of the Cancer journey. The waiting time, referral processes and appointment availability so far out they almost loose all hope, that many, many, many have to endure.

So why was I feeling a bit lighter?

Dr. Kerlin.

She took that cloud from me.

I felt so much better after that first Surgical Consult. It was moving forward. Dr. Kerlin was not a book I read. She was interactive. She listened to me. She gave me answers. She corrected my incorrect thoughts that would lead me to long nights and wrong roads to go down. She made me listen and repeat to make sure I was learning and paying attention. She wanted me involved as much as I wanted her involvement.

On the way to the restaurant, I felt that I was finally on the path to help myself out of the rabbit hole and lead myself out of Caner-land and back to my own senses, on a ground I was more comfortable on.

As I said, I still didn't know after meeting her on that Valentine's Day all the answers about my Cancer, that all came after my lumpectomy and the pathology reports, but I knew one thing. I had made and accepted that this was happening to me and I made my decision to fight. My D Day. My choice. It was coming from me. Not a reaction to something like my fight or flight plan of before, where I was in shock so just moved into action. I had distinguished the two differences and knew now that this was a conscience choice to learn about what was happening to me. To allow me to make educated decisions, to discuss them with loved ones it effected, and to find out the latest on what I could do to fight for my life and gain more time with my loved ones.

Walking away from that consult I WAS beginning to create my medical team and what we had to do to SURVIVE this. It gave me my power back. To be in a drive position. That was a far better fit for me then to be in a defensive position not knowing what I was really defending for. I also hated the feeling of being a 'victim' and the , 'this happened to me' type talk. I don't go there. I don't think that way.

Further empowering me, I reflected on an email, that someone who I love very dearly told me when my journey began with Cancer. My Great Aunt Sis explained to me that I, I Lisa Marie, was Unique. That what everyone else had to say didn't matter. That I would find my truth by finding my medical team and they would come up with a unique solution that worked, for me.

I liked that. Yes, I am Unique.

Dr. Kerlin was Unique. I liked that too.

Lunch after the appointment wasn't gloomy, it was full of love and support and solidifying with close friends what I was about to embark on.

After going through the first appointment, the days leading into the second Surgical consult didn't seem as scary. In fact, I felt like I knew what to ask as I had more data about myself, where my lump was, the size of my lump, breasts in general and an idea from a Surgeon of how we could treat it. I almost canceled it to tell the truth. And, I will be on this blog to tell you what a mistake that would have been and that anyone in this position, should get a second opinion and here is why:

Canceling would leave that door open about the what if's. Can't live that way. I decided that I needed to know that I did my best, looked at multiple options and really thought about these decisions. So I kept it. I would urge anyone to do the same. Be your own advocate. Do not let something happen to you, do something out of what is happening to you.

My Mom went with me that day of the second consult. We amazingly found a spot up front by the doors in the pouring rain and couldn't believe our luck. er.. we both looked at each other.. maybe luck wasn't the word for the day. We counted before we left the car, on the count of three, and raced inside to the elevators.

We checked into the Surgeons office. Very different office from the last. Not that I am a connoisseur of Dr. offices, but... Yes, he was a man with more man magazines and Dr. Kerlin a woman, with angels and roses, so there was that whole feminine verses masculine vibe but, that wasn't the difference. The office, it wasn't calming. As we sat in the waiting room we could hear a man on the phone talking quite loudly. His door was not closed and he was on the phone discussing a patient with another health professional. I can't even tell you word for word what was being said or on what subject he was speaking but all I am left to share with you is an image of Mr. Slate. You know? Mr. Slate from the Flintstones? A overbearing guy, big lug type, with feet on desk, blow hard, on the phone about...who the hell knows what, just someone who wants you to over hear him having a good time and you knowing that he knows you know it - types. Got me?

Funny, I still don't know what he looks like and I let his name go out of my mind long ago.

So the appointment....

After I fill out the paperwork, I hand it back over the counter, along with my co-pay and my insurance card. The girls in the Surgeons office are nice enough. Another couple comes in. They are about 20+ years older than my Husband and I. I cant help but think if they are here for the same consult. And, I wonder, if they are wondering if I am here for the same thing too?

My name is called. I am asked to come into a waiting room. I am walking into the room as I watch the paper gown be placed on the exam table. When the nurse looks at my paperwork she picks it back up, opens a second cabinet, and pulls out another paper gown. She replaces it with the first one. Why? This one is pink.

'Isn't that nice?' my Mom asks as the nurse smiles and walks out to allow me privacy to change.

I wonder if she is serious. Isn't what nice? All the fucking Pink that everyone wants to cram down my throat? The Pink cards and the pink flowers and the pink of the pink that is pink that shadows all pink that will ever be a pink hue, FOREVER? Am I to own that all too? I am so aggravated now. I should have canceled.

I pick it up and put it on, I look at my Mom. She smiles. She knows how I feel.

I sit on the exam table and wait. Ha, something I am good at by week.. whatever the hell it was by this time.

The nurse walks back in and has some papers in her hand.

"You didn't sign this back piece. That states our offices will be doing the surgery."

"No I didn't." I say, explaining she is right. "I won't know that until after I met the Surgeon and understand what he would like to do. I was planning on going over that with him and then making my decision."

"Oh, okay, it will be just one more second."

At what point do I get to scream? I am over waiting and everyone acting as though the questions they ask me are like, 'can you please pass the salt?' That isn't a hard request, right? Can you please sit here scared and naked with Cancer while Dr. Blow-hard on the phone comes to exam you? Calmly? You? Wait? Thank you. I am interrupted of my one woman cancer-land show...The nurse is back.

"I am so sorry, this has never happened before but he is not going to see you today. He does not do consults or second opinions and is not willing to meet with you unless you agree that he is the surgeon."

What?!?!?!

My Mother stands up outraged. "We want our co-pay back" is all she can muster out. Yea Mom, that's it. We want our $20 admission back. Which I have to say, if you knew what my Mother was capable of mustering out, I am grateful for the co pay comment. I think this is light in comparison to past rants. The nurse offers more apologizes. You can tell she is embarrassed and in shock to what she has been asked to do. I can tell that they don't have many Breast Cancer Surgical consults. How could you? How can you in your right mind, ask a Women to sign a piece of paper, agreeing to cut open her breast without looking at her first?

As disgusted as I am with this turn of events. And disgusted is a word that I use that isn't four letters.... but ya know, honestly? I am actually fine with it. Ya know what? Yes, I was put off and outraged. In fact, I still am as I share this story with you. There are so many stories like this on my journey that this was just another notch of someone I passed on my journey. Yep. Passed.

I wanted to know if Dr. Kerlin was the one, I got my answer. Done.

"Let's go and enjoy this rainy day." I say as I dress and throw out that Pink gown. My Mom looks at me. Am I the one being serious now? Yes I am. I open the door and with my hand guide her forward, "With the fact that we choose a Surgeon and have a big piece of my team, and something big off my shoulders, let's go have lunch."

See? Again with the food. A continuing theme in my life. You will learn I am a Warrior, I am fiercely loyal, I love my husband, my family and solid friend-ships, and I WILL enjoy this life of mine and celebrate it to the fullest extent that I am capable of.

Yes, picking Dr. Kerlin was another rock off my shoulders in-deed. And next was the rest of my team.

:-) And now, a break from this story I share with you, to make my hubby dinner. It's our Hope-I-Versary after all. Happy 2/14/12 to you and yours. And a very Happy Hope-i-versary to my Husband of almost 15 years, xoxox I LOVE YOU MY CHEVRON! TOGETHER, WE LIVE OUT LOUD!

You fell down a rabbit hole you say? My path to finding out about Breast Cancer, my truth - what Triple Negative means and meeting my Surgeon.

I am a pretty level headed person I would say. I can hear cackles from my peanut gallery as they read this now but when arm wrestled they would all have to attest to the fact that, well.... I am. I am conservative but a creative, forward thinking type. A go getter, but a bit measured. In true Lisa fashion, I decided that in order to really battle this disease, I needed to get in the game. I needed to know what I was dealing with, what to expect from Doctors and what I should accept from them. All part of my Pink Warrior fight plan. Sword drawn, firework girl right here, remember? I would be a student and learn all I could to arm myself.

I go to my inner circle first.

My close friend, who I mention in earlier posts, shares what she can with me about her journey as a Breast Cancer Co-Survivor. Her Mother Susan, lost her battle to the disease in April of 2010. She opens the eyes of my husband and myself to things we never even spoke about before my diagnosis. It was like I was in a new club and there was a new level to our friendship. There was so much she had kept to herself about details of the treatment that she witnessed. Not that they were all horrifically scary details but they were true facts that came along with the Cancer journey, outside of hair loss and nausea, which is about all most people know (me) about Cancer or want to.

We went over things to expect, side effects, things to watch out for, questions to ask my doctor.

She is the one who knew all to well from her Mother's files, that keeping files of your journey was well served as she needed to reflect back on them many a time when battling insurance agencies for payments. Another truth I was gong to have to learn about and take on. There was so much knowledge to learn out there about Cancer. What else did I learn? How many Cancer types and treatments there were out there.

For instance, Breast Cancer may get a bad rap as the biggest known Cancer that sucks up all the research dollars but.. did you know that there are over twelve dozen Breast Cancers? That out of all these Cancer types, there are only three Breast Cancers receptors that they have i.d. and have found a way to help fight? (a receptor, that means what is on the outer body of the tumor, like a shell). You may have heard of them: HER 2; Hormone; and Estrogen based receptors. Well, out of all the Breast Cancers they have found, about 80+% react to one of these three in a way that effects the cancer cell to either: stop growing, shrink, stay dormant in the body, and so on. When they biopsy you, they literally take one of these things and drop it on your cell to see what it reacts to. With the amazing research they have done, they can, if these types of Breast Cancer are caught in an early stage of 0 or 1 (there are five stage 0-4, 4 being they worst), can give a person almost 98% chance of survival over a 10-20 year period. That is why there is so much hype around education and early detection. It can make the difference of you hearing the words Cancer free after treatment or being a lifer, going every three months to check.

Isn't that amazing? Because of this research over the last thirty years, there are currently an estimated 2+ million survivors today. It is just AMAZING.

I also learn, there are some Cancers that don't have any receptors that they can find? Ones that don't need HER 2, Hormones and or Estrogen to thrive and grow in a human body? Do you know what they call those types? For a lack of all three, they call those types, TRIPLE NEGATIVE. Not one of the three receptor therapies works on this Cancer subtype. That means, that the cancer that grows does not need any of those three elements to grow, thrive and spread and they have no solid data at the current moment to create a receptor type therapy to combat it. They have no answers to what this cancer is, if it adapted itself to the cures we have used, and how it enters into our system. No answers as to why it grows, how it grows, how to shrink it, stop it, or make it dormant. There are many theories but none of which have ample enough research or success thus far. None. Zilch. But, what they do know is that TNBC (Triple Negative Breast Cancer) is increasing in people and all bets are off the table on the rules of who will and will not be at risk.

Over 65? Nope. Runs in the family? Nope. You have the BRCA gene? Nope. You have or have not had children? Nope and Nope. Only Women? Nope.

Triple Negative is not only an unknown in treatment I have learned, but it is alarmingly growing in percentages. It has gone from a 3% number in over all cancers to almost 20% of people diagnosed with this type of Breast Cancer in 2012. Out of all the people who lost their battle to the disease last year, a stunningly large amount of those are Triple Negative Breast Cancer fighters.

Isn't that amazing? Yea, not really the amazing you are or want to refer to. I know.

If that isn't enough to grasp, while I am finding out my truth, you have to then grasp that out of all the treatment options you may have heard of, there are real limits for some diagnosis's. Take Triple Negative Breast Cancer, the current treatment is to give you a dose dense Chemotherapy treatment, available for a Breast Cancer that has metastasized, even if yours hasn't (metastasized means spread).

How do you know if it works? Unlike other Cancers, the only way you will know if it works is to go through treatment(s) successful and stay vigilant on checking yourself at follow up appointments and live your life, waiting. Waiting to see if it spreads or comes back or God willing, just leaves you alone (please, say a request that it leaves the Survivor, Lisa Lee, alone, as you read this part. Thank you). There are no tests to know. And this is why, THIS IS WHY WE NEED MORE RESEARCH.

As they can't find a receptor for this type of Breast Cancer, they are also limited on how to create markers that will tell them if it has reoccurred or currently exists in your system. Research in this area is growing. Just last year alone, in 2011, Susan G. Komen gave a grant in the SF Bay Area for over 7 Million in Triple Negative Breast Cancer research. Which I am so grateful for.

This is where, on my cancer journey, I learned to use the word Hope during my fight in this battle.

I Hope they will find the cure in my lifetime.

HOPE.

What else did I learn? That it is important to be your own health advocate and find whatever it is within you, to do battle.

I met many a people along the way that had and still hold different truths for themselves. Far different from my own. Those varied to not wanting to know what went into their treatment for their Cancer - they treated their chemo days like a spa treatment and did not interact with anyone - and didn't want to know anything about their Cancer. Some self diagnose and have whatever they just read about and get confused and mixed-up on what their treatment plans and diagnoses really are. I secretly think that this is the patient most doctors fear and assume we all are in the onset. And then there's me. Those that not only know the name of their Cancer type, but at what phase, what stage and what the current treatment and treatments are available to them. My Husband would ref to this as a control freak... ummmm yea.. call it what you may, but I like being in the driving seat. If I am driving into a wall, then let me be the one to hit the gas.

I digress.

My coming to know all this was part of my research before meeting the two Surgeons that I had appointments with to consult about the Cancer removal. In deciding to do my research on Surgeries, I feel into a rabbit hole of breast knowledge, some of which I just shared. The book I choose to guide me through research was the Dr. Susan Love Breast Book and in it she recommends you meet with more than one Surgeon. I didn't and still do not think of this book as me sitting, searching out in my room, self diagnosing all alone hiding and crying and scared. This book was pure, truthful knowledge from a well regarded Surgeon. More empowerment and knowledge. It does a lot more then that actually, and I would highly recommend it for anyone. Any Women, BC or not. Be your own advocate and know your body.

If you have been reading my earlier entries, you know that I was ref'd by my close friend, to a well regarded Breast Surgeon out of the John Muir network who specialized in Breast Disease.

I was having a hard-time getting an appointment within the same month. I begged and pleaded to get a consult with her office. She is a highly regarded, board certified, leader in her community on Breast Disease and she is about an hour away from my home. The other surgeon, to give you back ground, was also Board Certified in General Surgery, came to me as someone my GP recommended from the network she was in and he is local to me. Able to see me in the same week as the other Surgeon, this helped me to move forward in the manner I wanted to... faster.

I remember meeting them both. What a difference.

I met Dr. Kerlin, on February 14th 2011. She was wearing all red. It doesn't dawn on me that it's Valentines Day until I see her. What a day I pick to met her. She is stunning, small, petite, and confident. I am excited to meet her. She tells me she doesn't normally hear that from someone with my diagnosis. I tell her I am excited as I know she is the key to my getting some answers. Getting staged. Learning more about how to treat this. Getting rid of a lot of the what if's out of my head and put to rest some unknowns. To know something solid about my condition. Finally.
Her exam room is comforting. I bring with me my posse through this journey who is - my Husband (my Chevron), my Mom (my Dove) and my close friend (my lead Warrior). I decide that only she, the lead Warrior, will go in the office with me. She has a clearer focus and knows Dr. Kerlin. When I get stuck on the Cancer word, she will continue to listen. Dr. Kerlin is exactly the way I would be. She is straight forward. Very kind. Not condescending. She goes over with me, line by line, word for word, anything that I have a question on regarding the tests I have done thus far (she has a copy for me to review as she read from her own copy) of my biopsy report. We go over a plan of action and what my options are.

She tells me that in her experience with my size of lump she doesn't think I am in a stage 0-1 but won't say more until she knows more. She asks how soon I would be willing to go into surgery and tells me what to expect. She explains how she plans to cut (hides around the nipple), how deep the cut will be(she will tunnel through tissue to remove the lump and then rework tissue as so not to show any signs of removal), how long the Lumpectomy will take(3-5hrs), the after recovery time and more(1-2weeks). I tell her through tears, that if she fins something while I am out, she can just do what she needs to in order to save my life, just take it all. She stops me. She smiles. She recommends a Lumpectomy first to get the tumor out. That will allow her to walk it over to Pathology and to properly stage it so we can make a plan for treatment. I will more than likely need chemotherapy or radiation or maybe both by what she sees in the size, and she will not know for sure until she takes the tumor out and can properly stage it with pathologies assistance. She does not recommend a Mastectomy at this time as there are other treatment options to save my tissue and we should know more before we go into invasive surgeries. The Lumpectomy is a day surgery and I will be home that evening she tells me.

All seems in line with what I was expecting and what I had read about. I do not know yet that I am a Triple Negative carrier, and I am glad to not randomly cut off body parts of tissue just yet. She asks if she can take her own tissue biopsy and I agree. She then looks at my girlfriend and warns her, if you get woosie, just so you know, I will have to abandon you. We all get a good laugh out of that. And she agrees to wait in the waiting room. The tissue biopsy she takes is not at all what I expect. She has a small tool like instrument that goes into he tissue and takes a sample but it feels like a pinch and that's about it. You can see the tissue samples as they get dumped in the jar to be sent off to pathology. Just small little pink pieces that look like a small pieces of couscous. This is all moving me forward. I take a deep breath and get dressed. I gather my belongs and go into the waiting room. There my posse sits in shock. My lead Warrior is trying to explain what just occurred in the meeting, while I was re-dressing, and what the next steps are. Lumpectomy and removal to find out staging. I am in a daze a little bit too. What keeps me going is my focus at this time.

We leave the office and make a plan to go eat. Why? Because in times of crisis for most people, they eat.

I remember walking through the parking lot. My Mother and my Husband decide to ride together. It's sprinkling rain. They are in the car waiting on me. The windshield wipers are on, they both smile and wave to me through the windshield. I know those smiles are masks. I wave back. I think it's better to let me Mom vent to my Husband on the way to lunch, as I know she is scared. You can see it in her face. Both of their faces actually. But she is disgusted by the turn of events and even more aggravated that she has no control over them (who did you think I learned these control issues from anyway? hmm?). I decide to go with my friend in her car and follow. I look at her as we are walking, she is looking down and we are talking and she is looking for her keys in her purse. I ask her how she thinks it went. She tells me something, I can't remember. I look at her and say, I have Breast Cancer. It's the first time I say it aloud to someone outside of an email and my head. She holds me and we cry in the parking lot. The horn honks. That's right lunch. We move towards the car.



Music video by P!nk performing Glitter In The Air. (C) 2009 RCA/JIVE Label Group, a unit of Sony Music Entertainment