Saturday, April 27, 2013

Not My Daughter, You Bitch!

"Not my daughter, you bitch!" I don't think there has ever been another sentence written or said that captures the emotions of a mom more than this sentence yelled by Mrs. Weasley in Harry Potter and the Deadly Hallows. Such a seemingly simple statement, yet it emulates every emotion I feel when I'm worried about my children. Love, anger, fear, protectiveness...a fierce need to destroy anything that would harm my child. J.K. Rowling managed to convey the message in one sentence, "Not my daughter, you bitch!"

Yesterday I had my follow-up with my Oncologist...and, yes, I did eat beforehand this time. We were there to get the results of my BRCA tests (genetic tests) and my PET Scan. I went in there feeling a little defeated and just anxious about getting this all moving. My insurance company had dealt me a blow last week by sending me a letter stating that they wouldn't cover my PET/CT Scan because I have Stage 1A instead of Stage 3 Breast Cancer and I was feeling pretty pissy about it when I headed to the doctor. How mad I was about their decision and the work I have ahead of me during the appeal was in the back of my mind as I entered the doctor's office. I was also anxious to get our battle plans drawn. All of the results were in and it was time to map out our course. Finally!

The first thing my doctor told me was that the BRCA tests came back negative. What? Wow! Really? I couldn't believe it; we were expecting another positive. I didn't realize how much those results meant to me. As I processed the news, I exhaled deeply like I'd been holding in a breath for weeks. My muscles relaxed like they'd been tight with worry instead of tight because of my Fibromyalgia. The doctor then moved onto the PET/CT scan. He brought us into his office to show us the images. They found another small lump in the left breast that they believe is not cancerous, but it doesn't matter because the boob will be gone soon. The BRCA test is negative. I have one intramammary lymph node that is cancerous. But, it's in the left breast, too. It doesn't matter because the boob will be gone soon. The BRCA test is negative.

Finally, we have a plan...
My doctor set up an appointment for me with my oncologist surgeon for Monday. We will schedule a bilateral mastectomy for as soon as possible. I informed my doctor that I WILL NOT have surgery before May 15th. Why? I WILL watch my daughter walk during her graduation. Missing that moment is not an option. Four weeks after surgery, I'll begin twelve months of chemotherapy. I'll have six rounds of TCH (Taxotere, Carboplatin, Herceptin) Chemo given in three week intervals. After that I'll continue the Herceptin Chemo every three weeks until I finish my year. I'll take a hormone pill throughout treatment and beyond. Ok, great...the BRCA test is negative.

My doctor could have told me that I was terminal and there was nothing that could be done and I would have been fine. I was emotional all day yesterday and couldn't really pinpoint why. I looked at chemo caps, planned for a hair cut, and added dates to my calendar. I was ready for all of this. Why was I on edge and ready to cry? I realized this morning that it all comes back to that BRCA test. The outcome of the tests wasn't going to change my prognosis or my battle plans. But, we expected a positive result. It's negative...we won a huge battle!!! I have a messed up body, immune system, etc. We've made jokes about how I need to transplant my brain and heart to another body. We've hoped that I didn't pass down all of my defects to my children. It was a joke until I was diagnosed with breast cancer and found out there was a breast cancer gene that can get passed down to your children.

The average woman has a 12% chance of developing breast cancer in her lifetime. A woman who has inherited the BRCA genes has a 40-85% chance of developing breast cancer in her lifetime. That's crazy! And, that's scary. That's why nothing else the doctor said yesterday mattered. Knowing that I haven't passed down the 'cancer gene' to my daughter is the best feeling ever. I could die tomorrow and feel like I won the war. Cancer CAN NOT have my daughter!

My children are my life. It's as simple as that. If they live, I live. If they are happy, I'm happy. If they are scared or in danger, I'll protect them (And, by that I mean I will do whatever I have to do to protect them...be warned!)

I don't think I can put into words how much I love my daughter and what she means to me. Some people may think it's strange when they see how close we are. I'm her confidant as she is mine. She's my best friend and my daughter. There's a fine balance that we've manage to achieve while teetering on the line of friends and mother/daughter. I will ground her in a heart beat and I will listen to her heartaches without judgement. We had a pretty tough beginning and we've been through some rough times together. The good times and the bad times; there were plenty of both. When she was five, I was broke trying to make it and take care of her on my own. That Christmas she asked for a tv and said, "If there's enough money I'd like a barbie doll, too." So grown up and mature for an almost six years old. She was already trying to take care of me. After David's head injury, we kept each other strong. She was only ten and had the weight of the world on her shoulders. I held her while she cried and she held me while I cried. Sometime after that, her dad's kidneys finally gave out. After months of dialysis, he received a kidney. I held her while she cried and told her it would all be okay. She's made her mistakes through the years; it's all part of the growing process. Even through the mistakes she made, I held her and told her how much I loved her. I protected her and never judged her for her actions. With each life lesson she's learned, I've been there to support her and love her. With each illness I've had, she's been there to comfort me and love me.

Through all of our troubles, we've had each other's back. I love her and she loves me. I'll protect her as she will protect me. It's something fierce, our emotions. I feel like my daughter has held the world on her shoulders too much and for too long in her short life. I've tried to shelter her and protect her as much as I could. The thought of her odds of breast cancer increasing because of a gene I passed on is...there are no words. How do you explain the emotions, the fear, the worry that you could have passed something on to your child that could harm her in the future?

 On May 15th, my daughter will graduate from high school with honors. She'll begin her own path (forever intertwined with mine) this fall as she heads to college to pursue her degree in Occupational Therapy. No matter where her path takes her or where mine leads, I will rest easy knowing that her path is her own. She is free and clear of those BRCA genes and will have a chance at a long, bright future. The battle is already won!


Thursday, April 18, 2013

Who has time for cancer?

I said in my last blog that I hated the waiting game, that still hasn't changed. I'm a "soccer mom". I live moment to moment, day to day, using a calendar to plan out my life. There's appointments, work, kids, sports, school, etc. Seriously, who has time for cancer?

Let me give you an example of my week:
Monday
*6-630 - get lunch ready for the boys...send Logan to school
*7-725 - get Tristen to the bus stop
*9 - get blood work drawn at cancer institute for testing
*930 - allergy shots
*12-4 - work
*630-730 - soccer practice (I'm the new asst. coach)
Tuesday
*6 - get Logan up and ready
*8 - Tristen's OT appt
*12-4 - work
Wednesday
*6 - get Logan up and ready
*8 - Tristen's Speech appt
*9 - grocery shop
*10 - check Tristen into school and hope he actually stays
*12-4 - work
Thursday
*6-725 - boys to school
*9 - allergy shots
*945 - Rheumatologist
*11 - pick up cakes for friend's going away party
*12-4 - work
*630-730 - soccer practice
*8 - surprise party
Friday
*6-725 - boys to school
*9 - pick up prescriptions
*10 - Montana's academic lettering ceremony
*11-2 - work
*4-8ish - work

This is just part of one slow week of my life. And, did I mention that David has kung fu every night? Seriously, who has time for cancer?

I'm not a patient person when it comes to getting things done. I'm a here and now type of person and this waiting game is driving me crazy. I'm waiting on this test result, that test result, PET scan, surgery or no surgery, chemo or no chemo, etc. Ugh, it's so frustrating. Someone really needs to let this breast cancer know that I have limited availability. I'm a hot commodity. My time is precious. I don't like to be kept waiting.

I started this blog to share a few tips on how I was losing weight. It seems like a lifetime ago that I had time to concentrate on my diet and exercise. The last few years have been long for me. I've had four surgeries in the last three years since that last post. I certainly had no time to blog. Two torn tendons repaired, one gallbladder removed, one sinus unblocked, and one deviated septum straightened, and I still wasn't 100 percent. I've been diagnosed with severe allergies. I'm allergic to inside and outside, latex, dairy, and some medicines. I'm probably allergic to this computer. I've been diagnosed with asthma...asthma attacks aren't fun and exercising isn't easy. After that, I was diagnosed with Sjogren's. It's an autoimmune disease that few people know about. Pain for the rest of my life? Fun. Days when I can't move my muscles and joints? Fun. Days when I feel like a marionette doll? Fun. Today I was diagnosed with Fibromyalgia. It's not really a surprise. Sjogren's is generally a secondary disease. More pain for me...oh, joy. More medicine for me...oh, joy. More doctor visits for me...oh, joy. I see a General Physician, an Allergist, and a Rheumatologist on a regular basis. And, now I have to add an Oncologist? I don't have time for cancer.

If it were just me, maybe I could squeeze more into my schedule. But, I'm a mom. Tristen has Asperger's so we have several appointments to help him navigate life. He sees an Occupational Therapist biweekly, a Speech Therapist weekly, a Therapist monthly, and a Psychologist every three months. Logan is my sporty kid. He has soccer twice a week and games on Saturdays. He's trying out for the school's soccer team, basketball team, and archery team next year. Montana is a senior. We're trying to get ready for graduation. I'm taking her senior pictures and making her announcements. She's receiving awards at school and preparing for college. And, I'm just trying to get as much Montana time as I can before she's gone. I'm always on the go. I just move from one thing to the next. Want to have lunch with me? I'll see if I can pencil you in next week.

A funny story...Montana had to get ready for prom last Friday and I had an oncologist appt. I always fix her hair (well, except for that one year that David fixed it.) She was stressing about her hair and asking if the doctor's office has an outlet for a curling iron. My friend and I were having breakfast and we were laughing about it as we pictured me curling Montana's hair as the doctor walks in with me saying, "You are going to have to discuss my problems while I fix my daughter's hair. I can't stop for cancer." The crazy thing is that I would do that; it's just how I am. I would have done it if she hadn't found another person to do it. I just won't stop my life for cancer. The sooner cancer realizes I have no time for it, the sooner it will go away and quit bothering me.

So, I guess I'm being a bit of a whiner today and feeling a little impatient at the moment. I say that we are just waiting, but I HAVE gotten some test results back since my last blog...

***My estrogen receptor and progesterone receptor tests came back positive. We're happy about this because it means the cancer feeds off estrogen and will respond to certain therapies.
***My HER2/neu test came back positive also. We are not happy about this because this means that it's a fast spreading, aggressive, angry little beast.

However, I am still waiting for my BRCA tests to come back and am also waiting for my PET scan. See, it all comes back to waiting. I need these results. I need to know what the next step is. I need to know when, where, what our plan of attack is. My soldiers need to be moved into position. My sister and cousin need to know when to come help. My mother-in-law needs to know when she needs to start taking over Tristen's appts. My work needs to know when I'm going to be out and for how long. My life is busy and it's not going to stop for cancer. Seriously, who has time for cancer?

Thursday, April 11, 2013

The Dreaded "C" Word

Has anyone else ever had the feeling that they've known their fate their entire life? I always knew that I was going to get the dreaded "C" word. I just knew it. Most people would call it being pessimistic, I call it being a realist. I'm sure this sense of foreboding is the direct result of living through my grammy's long fight with the "C" word. She was a fighter and I don't remember her ever not fighting. I don't remember the time before her mastectomy.  When the cancer returned, it was just another battle in the war. And, boy did she fight. I thank her for teaching me to be such a strong woman. She helped prepare me for this.

I grew up truly believing that it wasn't a question of 'if' I got it but a question of 'when'. It's one of those family urban legends that gets passed down through generations. "Every woman in our family dies of cancer." That's been in my head for so long and something I believed my entire life (even if it's not accurate). It's funny how experiences shape and mold your outlook on life. Maybe this feeling that I was going to get cancer at some point has helped prepare me. Everything happens for a reason, right?

On March 25th, I find a lump in my left breast. I'm lying in bed watching tv with David when I feel it. It all starts with an itch...thank you, Allergies! I'm scratching my left breast and feel this hard lump. Wait!!! That's not supposed to be there. I calmly (on the outside because I was already freaking on the inside) ask David if he can feel it. Yes, it's not my imagination. Oh, crap! The next morning I call my OB/GYN. 

On March 27th, I head to the OB/GYN prepared to have tests ordered. I lie down on the table as he feels around for the lump. It doesn't take long. This is what you feel? It's a pretty good size....not what I want to hear. He tells me that he's setting me up with a diagnostic mammogram. As the nurse makes the call, I feel this heavy weight. Perhaps it's a change in their demeanor or perhaps it's my imagination. She tells me that I'm going across the bay to the other Mobile Infirmary building because they can get me in sooner. The local hospital can't get me in until April 8th and they don't want to wait. Also, she decides to skip a step and order the ultrasound at the same time. As I drive home alone I break down for the first time. I know it's crazy because I knew what was coming. I guess I was hoping it was all my imagination. It can't really be the "C" word, can it?

On April 1st, I have my diagnostic mammogram and ultrasound done. David comes with me for support and comfort (for both of us) as we (he) try to stay positive. As I'm sitting there in my gown, starting to freak out from the wait, Montana sends a positive good luck text. That lovely child of mine has perfect timing. Boy, I love her! The mammogram is quite the experience...not so much painful as it is awkward. The technician takes extra pictures of the right breast...uh, oh. That's not the correct breast. Next, we move on to the ultrasound.  It takes about an hour to take all of the pictures of both masses. Yes, she found a mass in the right breast, too. She tries to make small talk, but I've already caught a change in her facial expression. Maybe it's just my imagination. In the end, she tells me that they believe the right side is Fibroadenoma but they can't tell what the left mass is. She schedules a biopsy for both breasts for that Wednesday.

BTW, the technician thought she could keep me from seeing the images, but I manage a backward, extended reach iphone shot of the ultrasound pics. I obsess about the shape of the masses later. Surely, it looks like all of the cancer pics I've seen online. It's probably just my imagination. I'm too dramatic. Here's the shot:


On April 3rd, I have my ultrasound biopsy. My mother-in-law brings me so I don't have to go alone. Once again I find myself in a hospital gown waiting for a test. Ugh, I really should have brought my ipad. The nurse tells me that the technician that did my mammogram/ultrasound wants to be in the room, so we wait for her. What? Surely that means I have the dreaded "C" word. Why else would she insist on being a part of this procedure? Steenie, there goes your imagination again. As they set up for the doctor, they find a second mass in the right breast. Finally, the doctor starts taking biopsies of the masses. This is not fun!! I repeat, this is not fun!!! OUCH!!!! He finally finishes and tells me that my doctor will call in 3-4 days. My technician tells me it will be longer because of the weekend.

Now it's a waiting game. Where will I be when I receive the news that I have cancer? How will I react? Why isn't my sister home yet? How do I explain this to my kids? How will my family go on without me? Man, I really wanted to see my kids grow up. Man, I really wanted to grow old with David. I don't really need my breasts anyway...they are just added weight. Is this call THE call? Is my imagination getting the best of me? What happened to my get out of cancer free card I should have received when I was diagnosed with an autoimmune disease (a story for another day)? Yes, waiting is the worst part!!! 

On April 8th, my OB/GYN calls. I'm at work waiting on a customer and can't take the call. This is the moment. I go into the kitchen and pace between the two freezers and call the nurse. The nurse tells me that she has to get the doctor. Oh, this is bad. First, the operator puts me straight through to the nurse. Now, the nurse puts the doctor directly on the phone. Imagination? Is that you? My doctor starts off apologizing for taking so long to get the results back to me. Wait? I thought it was going to be Wednesday or Thursday, not Monday....this is bad! The right masses are benign...fibroadenoma just like we thought. The left side is...deep breath...breast cancer. It's Infiltrating (Invasive) Ductal Carcinoma. He goes on to say that he just didn't expect this at my age. He hates giving me the news over the phone, but wants me to get treatment immediately. It's NOT my imagination.

Surprisingly, I handle the news well. I mean, I expected this. I've expected this my entire life. I'm more worried about everyone else. No one believed it was going to be cancer. But, it is. Now we know it and we can deal with it. It's time to prepare for war. No more time to feel sorry for myself. No more time to have those thoughts I had while waiting. No more thinking the worst. Survival mode...I know this mode well. I thrive in this mode. I've been in this mode for most of my life. I'm ready for battle. Let's get this party started.

On April 10th, I visit the Oncology Surgeon. I bring my bestie, Lisa, and David with me. The doctor walks in and says he's sorry I have cancer and that I'm here. I try to suppress a giggle as the doctor looks at me strangely. I'm not sure why I find his words funny, but it sounds like the funniest thing ever. I tell him that we're sorry I have cancer, too. What else do you say? I finally get to see the mammogram pics and sneak a picture of it. Yes, David and Lisa both think I'm silly or maybe crazy. We find out that it is Stage 1A - Early Stage**. That's a good thing...well, not as good as having no cancer, but the best we could hope for under the circumstances. This is going to make the fight a little easier. It's still going to be a fight...a war...but, I now have the advantage. I will see the Oncologist on Friday, April 12th. to get some genetic testing done and to begin mapping out our battle plan. 


So, here it is...the dreaded "C" word. Cancer...I have Breast Cancer. I AM a breast cancer fighter and future breast cancer survivor.

    
**we later found out it grew to Stage 2A.