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!

What happens after initial Diagnosis? The battle to want to fight occurs, and a Pink Warrior is born.

So there it was. The truth of the matter about my Breast Cancer, out in the open to my family and chosen friends on an email. Sent.

I had done what I could to move the ball forward in the direction of Surgical appointments. My needle biopsy came back Malignant. I was told I needed to consult a Surgeon of my choice and get consults on removal and stay focused on removing the Cancer and getting well.

I had one Surgical Consult appointment for Feb 14th and had another set for later that same week to meet a local, Surgeon, for a second opinion. I had a tissue biopsy for the following week in stone, just in case the Surgeons required it to move forward with the Surgery approval process. I had nothing left to do now but to sit and take in all that had happened.

Taking it all in also meant for me that part of excepting this reality was also excepting and realizing, I needed to take stock in my life during a trauma like this, and what happens next.

It was then, and still is, so hard to stay in the here and now of things when "that" is out there looming for you.. and by "that" I mean death.

I know that it is foolish to live this life and not think for a second it won't touch us all. It's bound to. Mortality. It's the cycle. I get that. I can rationalize and except that. It's so hard, the idea of it though. As the more 'alive' we become, at least for me, the more in-love you are with life it-self, and thus the harder it is to realize that someday, it will be over. And now, it has just become so 'in-your-face-real' for me. My odds have grown, over-night, to an unbelievably big, ginormous, number, that this is how it will be for me. Cancer ending my life.

It is no longer an "out there someday" kinda thought that I can push out to a safe distance in my mind, oh no, because you see, I don't know that to be a truth for me any longer. I loose. I am in the inner circle of that thought, trapped a bit. Whether I run far or not, it has a grip of me on the edge. A small part that will not ever be the same. It changes it all for me.

I must own that too.

What I resent most of all? How at one point, I freely thought to dream and now how this has all in some small way, limited me.

I can't ever let my mind go and think, "maybe, I will one of these days..", nope. You see for me, I go to that trailed off thought but it is always linked to that bricked wall, the end of the path where a big sign reads off that I might not be able to finish or complete any task I may set out to do. That there are promises, if made, I won't know if I can fully keep - I wonder to myself - even as friends now make plans, if I make new ones along side them - if I am an unknowing liar as I repeat the promise of 'yes'.

There is so much more to add here. So many more things to share about this dark place that exists for me. I think for anyone, really, who is truly facing mortality. The reality is that it all circles back to this thought: I choose not to stay in this dark place for too long.

It is a conscience choice I make when I catch myself in the dark thoughts. It is part of the battle.

I thought before Cancer entered my life in this way, that the 'battle' that was being referred to, was always referring to the fight to stay alive and to me that meant, taking the Cancer treatment(s) to battle the disease. You are battling Cancer by taking the treatments recommended by Doctors and Oncologists.

I now know that the real first battle, is the fight to even want to.

At the end of it all, I came to this, by way of reason. (By the way - I don't use that phrase, 'reason out', as a way to explain it away, but to honestly and logically look at my options. I am a person who plays the odds, I am a person who wants truth in her life, I am a person who wants to walk the walk she speaks. I am a fighter. I have faced other traumas in my life that I have survived. I am a survivor already. All of these things are my truths and facts for me.) I came to the following; It wouldn't matter what the issues were that I have faced in my lifetime, the trauma, the trials, or the highlights. I know that my life is not limited to those things I have or haven't done in my life. This is just how my song will go.

I must, now more then ever, take these words seriously to my heart: I will live my life with intention, I will live my life with truth, and I will live my life with a purpose behind it. I will do it on my terms, and I will, I WILL, LIVE MY LIFE OUT LOUD.

If a bed is in the end for me, then I will spend my days with intention and enjoy the days I have now and will leave that day, the one in bed, for when it comes. I do not need to lend it any energies now. It does me no good now. That Cancer doesn't get to get that from me. I will live out my life and continue my song, whatever it shall be. I will not be naive to what may come with Breast Cancer. I will prepare my last wishes so that I can be free. By doing this it will allow me to live freely and to live my life honestly by giving a loving act to my family. It will also allow me to know that it is not out there waiting for me. I took the power from it and gave it its due attention. It will lessen my load. I will work towards making my life simple and easy - so that at a moments notice, I can turn direction and have no loose strings (okay so maybe that part I am still slightly dreaming while awake but! I will make this a truth to live up to, none the less).

Most importantly, I will add things to my life that bring in richness and take-away things out of my life that bring me undue rest, no matter how hard or painful, or (insert word here) it may be. And, I will settle in for what lies ahead for me.

I will keep these promises to myself as sacred. I will strive to reach their heights and make myself land upon them. Like a Firework.

I am ready to be, a Pink Warrior, and on the other side of it, a SURVIVOR, once again.

My sword is drawn.




(My Warrior song during my fight - Song by Katy Perry; The song was written by Perry, Mikkel S. Eriksen, Tor Erik Hermansen, Sandy Wilhelm, Ester Dean, and produced by Stargate and Sandy VeeVideo found on You Tube - Official music video for Katy Perry's "Firework" off her album 'Teenage Dream'. Video Director: Dave Meyers, and Producers: Robert Bray & Danny Lockwood.) Lyrics to Firework: Do you ever feel like a plastic bag, Drifting through the wind Wanting to start again? Do you ever feel, feel so paper thin Like a house of cards, One blow from caving in? Do you ever feel already buried deep? 6 feet under screams but no one seems to hear a thing Do you know that there's still a chance for you 'Cause there's a spark in you You just gotta ignite the light, and let it shine Just own the night like the 4th of July 'Cause baby you're a firework Come on, show 'em what you're worth Make 'em go "Oh, oh, oh" As you shoot across the sky-y-y Baby, you're a firework Come on, let your colours burst Make 'em go "Oh, oh, oh" You're gonna leave 'em all in "awe, awe, awe" You don't have to feel like a wasted space You're original, cannot be replaced If you only knew what the future holds After a hurricane comes a rainbow Maybe your reason why all the doors are closed So you could open one that leads you to the perfect road Like a lightning bolt, your heart will glow And when it's time, you'll know You just gotta ignite the light, and let it shine Just own the night like the 4th of July 'Cause baby you're a firework Come on, show 'em what you're worth Make 'em go "Oh, oh, oh" As you shoot across the sky-y-y Baby, you're a firework Come on, let your colours burst Make 'em go "Oh, Oh, Oh" You're gonna leave 'em all in "awe, awe, awe" Boom, boom, boom Even brighter than the moon, moon, moon It's always been inside of you, you, you And now it's time to let it through-ough-ough 'Cause baby you're a firework Come on, show 'em what you're worth Make 'em go "Oh, Oh, Oh" As you shoot across the sky-y-y Baby, you're a firework Come on, let your colours burst Make 'em go "Oh, Oh, Oh" You're gonna leave 'em all in "awe, awe, awe" Boom, boom, boom Even brighter than the moon, moon, moon Boom, boom, boom Even brighter than the moon, moon, moon

I found a Lump, now what happens when you're told it's Malignant?

I went to see my GP for my follow up appointment the week after my Mammogram and Sonogram appointments. I hated having to go back into that office. I just didn't want what was happening to go on.

If it couldn't get anymore like a bad novel, my Cat, who was like my only child, of 17 years, had just died over the weekend while waiting out the follow up appointments, and our roof started to leak in the living room from a down pour we had the week before. At this sad time, I just wanted to be in bed. It was like a bad sign.

But, I also wanted answers on the next steps as to what this was and what to do about it so off my Husband and I went. To face it together. 

On the way to the appointment all I could think of was what was going to be next. To be honest, by this point, I had more then enough time with myself about the subject, talking out the 'what if's' in my head, and frankly, I just wanted the lump the hell OUT of my body! Let's all figure out what it is. Yes. Great idea, uh-huh. But let's get it out, get it out now!  It's not gone away on it's own. I wanted an answer. So what if I wasn't panicked a month ago, I was now. Now ladies and gentleman, now you have my attention. I was a dog with a bone. It seemed like I couldn't get any traction on what this could be. No-one wants to 'go there with you' until they have more details. Everything was a wait. At this stage of my journey, I knew very little about Cancer, and let's face the facts, that was what we were all fearing the lump was. I didn't know, and still don't - for that matter, it's capabilities. I just wanted to get it out of my body, and move on. Yet we waited for appointments and follow ups. Was everyone around aware it was STILL in my body? AND by the by, still doing things in there like.. oh, I don't know ...maybe... growing??? hello? anyone? anyone at all?? alarms? anyone? no? It was like screaming in a dream that you can't move your lips to, but you can hear the deafening sound of your own voice.

We arrived for the appointment. Finally, someone else s' voice I could listen to for awhile.

My Doctor asked my husband and I to come into one of the exam rooms and take a seat while reviewing a copy of the Mammogram and Sonogram. They have found a lump that is about 2mm in size, we are being told as we arrange ourselves in the chairs. They can not see anything in the lump, the doctor goes on to say, and no liquid to allow them to see through the lump which means its a solid lump, and not a Cyst. Solid lumps while not all cancerous, are not great signs. The Sonogram notes read that while there is nothing to be said at this time about the lymph nodes, they highly recommend a biopsy of the lump and further testing and a chest xray.

Great. No answers. More waiting and now, more tests.

"Biopsy?" My husbands voice cracks a bit. "Shouldn't we just move forward in removing it?"

"We can not remove it without knowing more about what it is. Which is what the tissue biopsy of the lump will do for us. It will allow us to know a path."

In other words, that is not the path. The path is: Doctor>Referral>Mammogram>Referral>Sonogram>Follow Up Appt for Results>If needed next step is Biopsy>Follow Up Appt>If needed, well, we can't talk about that yet.

More time with myself. More waiting I think. She interrupts my thoughts.

"Well, I have another idea, if you trust me to do it. I think I could get us a faster result on what this could be."

Faster. Yes.

"What is it?" I ask.

"A needle biopsy as opposed to a tissue biopsy."

Why didn't we do this last week I think to myself.

She continues, "Lets attempt to aspirate the cyst and send in the cells for testing. We may get that result back within a week while you call and wait for the tissue biopsy date."

"Yes, let's go for it." I answer without too much deep thought, I want to move this thing forward. 

The Doctor sets up to do the procedure next to me on an exam table in the private exam room that we are in. My husband on one side, the doctor on the other. My husband looks at me and squeezes my hand, he asks if I am okay with this. I look him in the eye and calmly say yes. She inserts the needle into my right breast tissue and goes in for the first draw. Nothing comes out. I think to myself why would it? If there is no liquid and its not a cyst ...it's something else. She thinks she misses it. She asks if she can go again. I agree. This time, a very small blood droplet comes out. She puts it on a slide kit. Folds it into a bag, opens a box with a digital bar code and asks her assistant to mail the box off to the lab.

"We should get these results back in no less than a week. In the meantime, you can pick up a list of places that can do the biopsy and begin to call to get a date for a procedure."

I get home and call my closet girlfriend. She knows Cancer. She has just lost her Mother less than a year ago, to an almost 20 year battle with Breast Cancer. Her sister works for John Muir ER. "What do I do?" I ask her. She tells me to hold on while she makes a call. I hang up and sit down looking at my kitchen wallpaper. I wait. I pick up the phone after the first ring, it's her, I don't even say hello.

"What do you know?" my husband rushes into the room to eavesdrop on the conversation.

"Find a Surgeon to just get it out, and keep calling for a canceled date with the biopsy imaging center to get results, if that's what you need to get a referral and an earlier Surgical consult date. But you need to get it out."

I begin the calls. I have two paths right now, Biopsy and Surgeon. I need a biopsy quickly with results even quicker to get to tell me if it's Cancer or not. Surgeon's move you up the list of appointments if it's Cancerous as opposed to you being in the earlier stages of a possible benign lump. Why? Because that's how many patients they see. That's how many lives have been touched by this. It takes me about a week and a half but I finally get a line on a nurse in a nearby city that may be able to fit me in a week sooner for a tissue biopsy. In the meantime, I am also investigating Surgeons. I have a referral from my GP, I have my friend's Mother's Surgeon as a second referral and a few others in my network.

I begin each day making calls. The same calls. To the same places. Pleading with the same people. For an appointment closer then they have given me. I want it out, and need to put my energies somewhere besides the what if's. This feels more like moving forward in the Cancer journey. And, it feels like I am advocating for myself as opposed to being a victim.

Fight or flight I tell myself.

Through my girlfriend's recommendation, I get a hold of the Surgeon who is highly regarded in her field, in the John Muir network, for Breast Disease. March 24th is the soonest date she will be available to see me for a consult. I call the surgeon my doctor recommends. He can interview me next week in the Silicon Valley. Great. I take both the dates. I call the image place back and ask if there is any movement. None. My husband tells me to relax. There is nothing we can do right now. Nothing but wait.

And the waiting is excruciating.

We share the news with close friends who help us pass the time while we wait for results. They are very supportive as they, themselves have been survivors of many a different situation. Some Cancer, some other life crisis. All of substance.

It's the beginning of February. It is a bright day. I pour myself a cup of coffee and wait for my husband to come in the breakfast nook to join me for awhile so we can discuss what is going on and our next step plans before I begin the calling again.  The phone rings. He answers as he normally does. I hate to answer the phone. More of a in-person talker, I am. I can hear him, I think it's my Mom, "okay let me put her on" he says as he hands me the phone. I look up. And he has tears in his eyes. It isn't my Mother. He grabs my only free hand with both of his hands.

"Hello"

"Hello Lisa."

It's my GP.

"It's malignant."

"It's what type?" I ask. Who is this talking for me while I freak out in my head?

"It's malignant."

"No,.. umm pardon I meant, what type of Breast Cancer is it?" I think she is set back by my reaction.

"It's an Invasive Carcinoma type of Breast Cancer with Basil characters."
 
I ask if she can tell the stage from that pathology report she has. She tells me that they need to remove the lump for that information, the sample couldn't give that information. It needed to be biopsied so they could test it for receptors to not only stage me but to further tell me the type of Cancer treatment I may need. I ask her to repeat the Breast Cancer type to me again, repeat the words on the report one more time so I had them correct. I write it down, word for word. Fight or flight I keep thinking. Fight or Flight. There is no time, keep the wave back, stay focused, I know I will need this information. I am not sure why but, it will help me. This knowledge will help me. It will keep me focused. Fight or Flight. I arrange to get a copy of the report with an assistant in her office and hang up.

I am in utter shock. Not sure where to put my thoughts first. My husband. I grab him. I feel for a moment that I failed him. I made a promise to him that I wont be able to keep. How awful. That he is with me. When he could have had another life. Another chance at another adventure. I am beyond devastated that I have ruined our chances. We had dreams, you know? Plans? I feel them going away. I feel out of control. He holds me. We comfort each other. We say all those things you say .. that it will be okay, that we will get through this, that we will find our path. The wave is coming and harder to hold back.

You always wonder what your end may be, and there is no saying that this is it. It could go another way.  Bus, car, sleep, skiing (I don't ski but.. okay.. it could happen, I guess)..... but this is a higher percentage now. My second hand clock is ticking louder now. There is no more waiting on 'someday' now. It is all, right, now. Rushing by like sand in your fingers and you can't stop it. There is nothing you can do but enjoy all of it, but you realize that, and you have lost so much sand already, as it keeps going by and it is just out, used, lost. Snap shots, memories, moments, paths unchoosen, feelings, experiences, the many different faces of those that have gone by you in your life, all of it. Going. 

I need to tell everyone. I need prayers. I need to know that people know this is out there for me.

Fight or flight I keep reminding myself.

I wrote an email. I cant bare to make all the calls. How will I get through them all. Like a band-aid this will be easier. Or so I think. I takes me almost 4 hours to write the email. I cry, I scream, I erase and rewrite. I add to the list of receivers. I delete. I delete again. I spell check. I re-add. I cant read through the tears. They will get the message. I hit send. I need to move on to the next piece now. Hold the wave back. Fight or flight. Stay focused.

I call the recommended Breast Surgeon from John Muir back. I tell the assistant that I will come to the office, sit quietly and wait for any opening that the Surgeon might have. That I now know my results, and it's time to to move. They tell me to come, they aren't sure how they will fit me in, but to come next Tuesday. February 14th.