I Always Thought Unique Was Great Until Now...

I waited until I got through the weekend to write. Sometimes writing is so therapeutic and sometimes it's so hard on my heart that honestly I don’t have it in me. I hope none of you ever have to experience this. It is the most gut-wrenching thing I have ever done. Trying to stay positive and not let fear rule my life is proving to be a full time job.

Friday I went for genetic counseling. Friday I found out that I am what is know as “triple negative.” If we were drawing straws for breast cancer, mine would be the short one. Triple negative breast cancer or TNBC accounts for about 20% of all breast cancer. Leave it to me to be the exception to every rule.

TNBC means that the cancer cells won’t be receptive to drugs like Tamoxifen and Herceptin (hormone therapy or medications that block HER2 receptors.) What does that mean? Well, it means that instead of hormone therapy, treating TNBC involves chemotherapy, radiation, and surgery.

TNBC doesn’t have as great of a prognosis as other types of breast cancer. The way cancer prognoses are determined are on five year scales. TNBC had five year survival rates of about 77% versus 93% of other types of breast cancer according to a 2007 study. TNBC has a greater chance of recurrence. Also, TNBC is grade 3 which is the most aggressive grade.

I was blood tested for the BRCA gene mutation and those results should be in next week.

(I explained the BRCA gene in a previous post.)

So that’s the news I had to digest over the weekend.

That doesn’t paint the whole picture yet because that was just the news from the pathology report and genetic counseling. I will have more of a full picture after I see the breast surgeon on the 11^th.

So as you can imagine, this has not been an easy weekend. I’m trying so very hard to stay upbeat and positive. It’s who I have always been and it’s what everybody expects from me. Nobody wants to see Amanda in the bathroom floor crying. Nobody wants to see Amanda not smiling or laughing. Amanda doesn’t want to see Amanda like that.

Every single joy seems to have a bitter aftertaste of fear. Every moment…every activity with my kids or my family or my friends leaves me wondering how many more of these I will get. 

With all of my heart, I hope a lifetime of them.

I am so tired of crying. I don’t know if my eyes have ever cried so many tears. And that's saying something because I'm a cry baby!  This morning I decided I would run a nice, hot bath and just soak. I did just that. I sat in that tub of hot water and I tried to let the weight of the world just wash right off of me. But halfway through, I was sitting up clutching my knees to my chest and sobbing. I was crying out and begging for more time—more time to raise and actively love my kids, more time to make a difference in the world, more time to splash in puddles and scratch puppy ears and kiss my husband—more time to live. The water was cold when I finally got out of the tub. Close to an hour must’ve passed while I was in there.

I sat on my bed in my bathrobe and I began to think and cry, think and cry.

When I was a kid I thought 38 years old was ancient. Now I’m 38 years old and I realize that I have just begun. I am finally starting to figure out this crazy life and I can’t and I won’t have this stupid [insert every curse word you can pull out] cancer stealing my life and my joy.

So I stopped crying and I got mad. I got so mad. Smoke may have possibly been coming out of my ears. I was mad at cancer and I was mad at myself for letting cancer tear me down. I went downstairs and I got a marker and I got some paper and I started writing all the reasons that cancer would not win. And I started writing down scripture that would lift me up and empower me. And I started walking around my house and I started posting them all over the house. On the top of my laptop it says, “I’m beating cancer because I still have things to do on earth!” (write my book) On the front door it says, “I’m beating cancer because I am strong” along with Joshua 1:9 (I’ve commanded you to be brave and strong, haven’t I? Don’t be alarmed or terrified, because the Lord your God is with you wherever you go.”)

I have these posted all over the house—in the bathroom, in my bedroom, coming down the hallway, behind the sink when I’m washing dishes—everywhere!

They days and weeks ahead of me are full of unknown and fear but God’s already up there. I just have to trust.

-lightningbug

You Said You'd Be Here, So I Knew You Would...

Last night was a bad one. And I wasn’t going to write about it, because I don’t want anybody to see me weak, but then I wouldn’t be honest with you and I want to be honest, even if it’s not easy for me.

Yesterday I was filling out a family history form for the genetic testing (which I think is quite ridiculous anyway…if I’m paying thousands of dollars for you to do genetic testing to see if I have gene mutations for cancer, why do I have to do all the work?!) ANYWAY, I do. I have to fill out this very in depth family history. While working on this, I remembered that my aunt had given all of this to me in an email a while back. I searched through my old emails and I found the email. I also found next to that email, an email telling her that I wanted the family history because I was making an overdue gyno appointment because I had a “soreness in my left breast” and I “had even convinced myself that I felt a lump a couple of days ago” but now it’s no longer sore and I can’t feel anything so I think it was probably all in my head and was probably just a strained muscle.

I read that and I almost fell out of my chair. I didn’t even remember that! And it wasn’t something that I had even mentioned to the doctor then because I couldn’t even feel it after that.

What if… What if I would’ve told her two years ago? What if I would’ve insisted on a mammogram then?  What if this shit has been there that long? Here I thought it just popped up a month ago, but what if it’s been there for ages? What if it has take over my entire body? And I’ve read the statistics on that once it’s spread. I don’t have a snowball’s chance in Hades if it has spread. The dreaded "what ifs" that plague every one of us.

And then I got up from my desk and Oh My Gosh! My back! My lower back! I have had lower back pain for at least 10 years but at that moment I was sure that the cancer was now in my back and that’s why my back was hurting so bad.

I made it home and plopped down in the chair. I needed to go get some groceries but I was drained. And sitting in the chair felt good. Getting up felt bad, walking felt bad, bending over felt bad. Sitting and laying down felt ok.

I looked all over for the stupid heating pad and I couldn’t find it. And I kept having to bend over to look for it. Mental note: Never store a heating pad where you have to bend over to get it because if your back is hurting, that really doesn’t feel great.

Never did find the heating pad, but I finally found a heated throw and turned it up on high and laid on that. It was better than nothing. I laid back and I began to sob. It was just the culmination of everything. It was the realization that this may have been there longer than I thought and the danger that goes along with that, it was the feeling of despair and fear, it was thinking of how people think I’m so positive and I’m just a big, fat fraud. And then on top of all of that, my stupid back decided to stop working! I was crying so hard that I thought I was going to hyperventilate.

My sweet boy and I were the only ones at home at this time and he walked in on me. He said he heard me and asked what was wrong. I did what any good mother in that situation would do. I lied like a dog. I told him I had been reading something and it made me cry. Which technically I have been reading all kinds of things that have made me cry, but that wasn’t the full truth at that moment. He looked up and he gave me a hug and kiss and then went back to watching something on his iPad.

I want to be like him. I want to be child-like and not have this fear inside of me.

I was supposed to have lunch with him one time at school. As usual, I was running late. I ran in right at the last minute and I said, “Oh my gosh! Did you think I had forgotten?!” He calmly replied, “No, I knew you’d be here. You said you’d be here so I knew you would.”

That’s faith. He has complete faith in me. “You said you’d be here so I knew you would.”

Through this journey, I need to remember that statement.

When I think for a minute that God isn’t with me, I need to remember “You said you’d be here so I knew you would.”

God is our refuge and strength, an ever-present help in trouble—aka 

“You said you’d be here so I knew you would.” 

It could be the school cafeteria or cancer.

My husband has had a hard couple of days also. It’s not just me who got the cancer diagnosis. He got it too. And our kids. And our family and our friends and our community. We all got it.

I don’t know what it’s like to be married to someone with cancer. Hell, that may be harder than having cancer. He has to try to be strong for me and the kids and he has to keep going to work and be proficient in his job and then come home and help with everything at home and then he sees me in my bedroom crying into a pillow. And he has to put on a brave face and put all of his feelings on hold to lift me back up.

Last night my friends stepped up and encouraged me when I was in that dark place. They prayed hard for me and they sent me pictures of survivors (one of the pictures was me.) They calmed my fears and told me that cancer could not jump around like lice and fleas and spread when I told them I was CERTAIN that has already happened. I had some sweet peas come to my door last night with flowers and cupcakes!

See, I told you I’m not the brave one here. You guys can’t see because you are on that side, but you are the brave ones. YOU are holding me up.

Keep up the good work.

-lightningbug

Haunted House Bravery

The last few days have been so long and exhausting. The support I have received has been overwhelming, to say the least. I have had my nose in my phone or laptop for four straight days because I have SO MANY friends and family who are cheering me on!

And when my friends and family send me a message or bare their soul to me, “thanks” just doesn’t seem quite adequate. It doesn’t even begin to convey what the hugs and prayers and well wishes and the insight have meant to me in the beginning of this journey. I have tried to reply with my heart, but honestly, there isn't enough time in the day. I will eventaully get back to each of you though! I promise!

I have cancer. That still creeps me out to say, so when it creeps you guys out to think about it, don’t worry! I’m totally right there with you!  Nothing else has changed about me though. I am still going to sit in the bleachers with you and laugh about everything under the sun and I’m still going to cuss because I still cuss and I’m still going to drink like 14 cups of coffee a day. I'm still just me.

You can talk to me openly and honest about my cancer or how that girl at the fair last night could’ve really benefitted from a hot oil treatment. We can take it either way. Everybody (including my kids) knows I have cancer now. That’s the way it had to be because that’s how I roll. So you don’t have to worry that you are saying something wrong or something that you shouldn’t. I almost posted a pic of the enormously disgusting bruise on my boob from the biopsy the other day. THAT’S how open I want to be with you. In a year or two, some young woman will get that horrible news that I did on Friday, but she won’t have all of the support that I do, and she will feel alone and hopeless and she is going to stumble on this blog and she is going to laugh and cry but she is going to walk away with hope and know she is not alone.

There’s no rule book that comes along with this. You can say what you feel comfortable with saying. If hugging me and saying you love me and you are praying for me and asking me about my upcoming doctor’s appointments is what you want to do, then do that; if asking me about my son’s upcoming baseball season is what you want to do, then do that. I have cancer, not cooties, so don’t be afraid to treat me just like you did last week before you knew. Yes, I need support and yes I love hugs and yes I love that! Someone hugged me over the weekend and said, “I know you’re probably getting sick of this…” NOOOO! Never would I ever get sick of that! And in five years when I’m completely healthy and even more fabulous that I can possibly imagine, you better still hug me and say, “Man, we kicked that cancer’s ass.”

Because love and support doesn’t have to be confined to hardship.

Everybody keeps telling me how brave and strong I am. I’m really not brave or strong. Yes I have a positive attitude because that’s just who I am, but I’m not brave and strong. My friends and family are brave and strong and I draw my strength and bravery from them.

We were at a haunted house last Halloween and I hadn’t been to a haunted house since I was a kid. My husband said, “You just have to be scarier than they are.” So he would come around the corners and he would scare the ghosts and the bloody zombies before they could scare us and we did more laughing than being scared.

That’s kind of how I feel about all of this. I’m not sure I’m actually brave or strong, but I plan on creeping around the corners and scaring the hell out of cancer before it can scare me.

Yesterday morning I got the call with my first two appointments. I have my MRI on March 9^th and I see my doctor on March 11^th. That was the week that I was supposed to go to Baltimore. My husband had training for work and I was going to tag along and spend my days in the hotel room in my bathrobe binge watching Netflix while he was at class and then we would have the evenings to hang out at the Inner Harbor (one of my absolute favorite places.) In our almost 18 years of marriage, we have gone away without kids once. This would’ve made twice. Instead, of Maryland crab cakes and relaxation, I will be in an MRI capsule and then discussing how to proceed with cancer treatment.

And yes, that sucks. And yes, I’m a little bitter. And cancer better be glad that it’s not baseball season and the Orioles weren’t in town or things could’ve gotten really ugly, really quickly.

Yesterday afternoon I got another call from Roanoke and this time it was to set up my appointment for genetic testing. Who knew? So I go this Friday for genetic testing.

And somebody will read this who doesn’t know that I am adopted. Yes, I am adopted. I found my biological family in 2013. Not only did finding my biological family give me a second, incredible family and support system, but it also gave me my family history. I know that I have an aunt who had breast cancer pre-menopausal (age 46.) I will be tested to see if I have a gene mutation that makes me more susceptible to breast and ovarian cancer. This testing also will reveal how the cancer is fed.

From brestcancer.org:  Breast cancers in women with BRCA1 abnormalities are more likely to be estrogen-receptor-negative — meaning that the cancer’s growth is not fueled by the hormone estrogen — and to have “high-grade” cell growth. Both of these characteristics mean that chemotherapy will be more effective than hormonal (anti-estrogen) therapy in treating these cancers.
BRCA1- and BRCA2-related cancers often test negative for overexpression of the gene known as HER2/neu. This genetic abnormality is not inherited, as BRCA1 and BRCA2 mutations are, but can develop in women over time. When the HER2 gene is overexpressed, the cancer cells have too many HER2 receptors (human epidermal growth factor receptor). HER2 receptors receive signals that stimulate the growth of breast cancer cells. HER2-positive breast cancer is considered to be a more aggressive form of the disease, but it can be treated with Herceptin (chemical name: trastuzumab), a medication that targets HER2. Most BRCA1- and BRCA2-related cancers cannot be treated with Herceptin because they are HER2-negative.

If you’re like me, you probably zoned out halfway through reading that like a college freshman in a biology class, but basically through this testing, they will be able to tell if I have the genetic mutation and they will also be able to tell what treatment will be most effective.

www.breastcancer.org is a super great and informative website. I have done way more research there than I ever imagined I would.

This week, several breast cancer survivors have stepped up and contacted me. I am a writer and I can’t even express what that has meant to me. All of my friends and family have shown me the most immense love—but to have people who have lived this hell to talk to you and walk you through the dark valleys—that is more than I can describe. 

-lightningbug

In a world of Eeyores, Be a Tigger

I ate and drank myself through the Christmas holiday. When I went to slip into my favorite pair of jeans for a New Year’s Eve party, I nearly died. I could barely get my thighs in them!  I was about to bust the seams out! I got on the scales and realized that over the summer and fall, I had managed to gain 25 pounds. I mean…when you’re good...you’re good. Wow. 25 pounds. In a matter of months. I went to the party in a different pair of pants. The following week, I decided enough was enough.  I decided that 2016 was going to be the year that I took care of Amanda. I haven’t had an actual doctor in seven or eight years. I know that sounds terrible. My former doctor stopped practicing due to family matters and I still haven’t been successful finding a replacement. “Find a doctor” was on my list of things to do in 2016. I also decided after nearly 10 years of lower back pain, I was going to bite the bullet and go to the chiropractor to see if I could get lined out (no pun intended.) I decided I was going to start eating better and exercising. 2016 was the year for Amanda.

I had been working out downstairs. I had my Gilmore Girls on Netflix and I was rocking out those 25 minutes on the elliptical. I finished that and then lifted weights. Healthier and stronger in 2016!

I finished up and noticed that my left boob was sore. I was thinking it was probably from those butterflies I have been doing. My upper body hadn’t seen weights in a couple of…ummm…decades. Yeah, ashamed to admit that but nevertheless true. I came upstairs and I took off my shirt and lifted up my bra and started feeling around on my sore breast and there it was. It was a lump. First of all, who decided “lump” would be a good word for it? That is a horrible word. How about a fluff? Fluff is a good word. Lump is horrible sounding. I found a lump though. As luck would have it, I already had my yearly GYN visit scheduled for that following Monday (this was Friday.) I had my exam that Monday and I told my doctor what I had felt. She felt it and didn’t really feel like it was anything but went ahead and scheduled a diagnostic mammogram and ultrasound to rule out the bad stuff. I had the mammogram and ultrasound done on Monday, ten days after my exam. Perks of being a small town girl--I knew the girl who checked me in, I knew the girl who did the ultrasound and while I didn’t know the girl who did the mammogram, we are chatty in small towns, so I felt like I knew her before we finished.

I kept hoping to hear things like “this really doesn’t concern me” or “we see this a lot, it’s probably from too much coffee.” None of those words ever came though. What did come were “We see some asymmetry. It may or may not be anything but we want to err on the side of caution and go ahead and get a biopsy.” 
Biopsy. Just like lump, it’s a horrible word. Lump…biopsy…and we all know what comes next in that list of horrible words.

I went in for the biopsy on Wednesday. My dad went with me and also drove me to the mammogram Monday.  The day of the mammogram it was snowy and the roads were bad. If it would’ve been just an ordinary mammogram, I would’ve rescheduled but I had waited over a week and I couldn’t wait any longer. I would’ve called the National Guard to get me there if I had to.

I have such a good dad. I’m sure a lot of us feel that way about our dads. He is usually the pessimist (hello Eeyore) and I am the “eternal optimist” or so he nicknamed me years ago. I always see the glass half full. I always give the benefit of the doubt. I think everybody has good in them and I think there’s more good in the world than bad. I’m the funny, light-hearted one.

For the last couple of days, I have been the pessimist. “Tut, tut, looks like rain.” I have been cheating myself out of today’s joy and blessings by worrying about tomorrow. And because I’m worrying about my children and their future, I have justified it all in my head. I’m doing nobody any good though. I’m making myself sad and everybody around me sad and worried. My Eeyore dad looks like Tigger compared to me. My husband is coming back at me with coach pep talk when I start to be a Debbie Downer. Everybody wants funny, witty, light-hearted Amanda back. And so do I. And she will be back. But for now, she waits in limbo.

*********************************************** 

“Hello?”

“My I speak with Amanda Griffith?”

“This is she.

 “I wanted to go over your mammogram results.”

“Yes.”

“I spoke with the ultrasound tech today. She said they were concerned about that mass, which is surprising to me. [MASS??? Now it’s a mass??? Now lump doesn’t sound so bad anymore. Ok, focus Amanda]

“Yes. I’m supposed to have a biopsy tomorrow.”

Everything from that point on, I can’t remember. I can’t remember because I was standing at the dairy cooler in the supermarket with my daughter while I took this call.

Ok, let me take this time to interject. There should be a girlfriend doctor’s guide and the first question you should ask is, “Hey gurrrrl. You ain’t all up in the Wallyworld are ya?” Because medical reports should not be given while I am trying to decide between mozzarella and monterey jack and my daughter is looking at me.

I’m sure all of the color drained from my face. It wasn’t that the news I had just received was really any different than before, but it was a different delivery. And it scared me. And somehow I got to the checkout counter with my cheese and my daughter, and I was texting my husband and I don’t remember checking out and the cashier probably thought I was the rudest person ever. And there’s a lesson I took away that day. I have looked at people and passed judgment on their actions or words. “Oh my gosh how rude!” But what if those people had just received some bad news? We don’t know everything we think we do. We need to be kind to everyone we meet, even if it doesn’t seem deserved. I wouldn’t have deserved anybody to have been kind to me that day, in that moment.  We don’t know what others are struggling with. Always be kind.

*************************************************

Wednesday

I arrived at 7:40 am to register for the biopsy.

“What would you like to pay today?”

“Well I’m not sure. What is today’s cost?”

“!$%!”

 “Oh, is that all?”

“Buh-bye Lasik surgery."

Yeah. We rarely even meet our medical deductible throughout the year. We are healthy people. We had tucked away the maximum $2,500 in our flex spending account this year and if we came to the end of the year and the kids hadn’t broken a bone or we hadn’t had to spend that medical money, I was finally going to get my eyes corrected. 

This biopsy would have me meeting my deductible and my out of pocket all in one fell swoop. Grrrr.

After registering, I went into the room and they explained everything that would be happening. Basically they are going to numb me and then they use the ultrasound to see where the mass is and then they stick a needle in there and it sucks up the tissue sample and they release it into a jar to send off. Yeah ok, well they do that four or five times just to be sure they get a good sample.

While the doctor was looking around, he saw what appeared to be an enlarged lymph node. He decided to go ahead and biopsy that also. That is probably what scared me the most. I have heard people whisper about cancer patients, “Yeah, I heard it has moved to the lymph nodes” in that death sentence tone.

It took about four or five samples for the lymph node biopsy. After that was complete, I could finally put my arm down from over my head. I had it up there for so long that I couldn’t feel it. My hand and my fingers were numb. It felt so good to put that arm down. Next came my breast and when that needle went through my skin, I didn’t feel a thing, but it sounded like the jabbing of a dull pencil through a piece of rubber. The sound made me flinch. The breast biopsy went much faster and with three samples, they were finished. I got “tagged” and then went back to mammogram to do another mammogram with the biopsied spots tagged. This is done so they will know in the future what places have been previously biopsied.

I asked the doctor when my results would be in. He said Friday or possibly even Thursday. I told him to not make me wait through the weekend. I begged him to let me know by Friday and not make me go through the weekend not knowing. He gave me his cell number and told me to call him if I hadn’t heard something by Friday afternoon.

I got iced down and dressed and went on my merry way. I came home and I took turns between icing and sobbing. I was scared. All I could think about was how much my kids needed their mom. I frantically thought about proms and graduations and weddings and grandbabies. I had to be here to answer the phone when they called and needed help with a colicky baby or how to make cornbread or when they couldn’t find that lost pair of red socks that goes with their uniform. They need me. They needed their mom and I had to be here.

The following day was not much different. Less ice, but the same amount of fear and tears. Deep down, I felt like it was something, in spite of the positivity that surrounded me.

My closest friends and family knew about what I was going through by this time. They were offering me all the support and kindness and love and prayers that I could hold as we waited for the results. I have been surrounded by total love and compassion and it is a beautiful thing. Friday morning I got up and began the normal weekday routine, getting kids lunches packed and finding lost things, getting kids off to school. Everyone had left except Natalie and she was standing by the door and she said, “Hey mom, look at those two cardinals right there in the tree.” I walked to the porch and looked out there and sure as the world, there were two beautiful red birds in the maple tree in the front yard. As ridiculous as this sounds, I saw them and a peace that I hadn’t experienced until this moment, came over me. I had been praying for peace, others had been praying for my peace, but I hadn’t received it until that moment. When I saw those birds, I knew everything was going to be ok. I came back inside and I googled cardinals and I learned that sometimes our loved ones come to us by way of birds when we need them most. I have missed my grandparents every day since they passed but I haven’t truly needed their wisdom, their peace, and their amazing love until this. 

And there they were to tell me not to be scared and not to be anxious because it’s going to be ok. And like the flip of a switch, I was a different person. All of those doubts and fear were replaced with strength and positivity and hope and belief and complete resolve and suddenly there was no room left for fear and negativity.

******************************************

Friday

Around 10 am on Friday, my phone rang. Caller ID said Roanoke. I answered on the first ring. It was the radiologist who did my biopsies. He greeted me and the next word was “unfortunately.”

“Unfortunately the tumor did show cancer. It’s about 2 centimeters so that’s the size we like to catch it.” “The lymph node we biopsied didn’t show any signs of cancer though, so that’s a good thing.” He apologized for having to give me this bad news. I told him that I had three of the most amazing reasons to fight like hell and that I had no doubt in my mind that I would kick butt. He wished me the best and said farewell with “God bless.”

I hung up the phone and I didn’t cry. Not one tear. I didn’t fall apart, and in a way, I actually felt better than yesterday. Yesterday I didn’t have the facts. Yesterday I spent my day imagining the worst possible scenarios and practically making my funeral arrangements. Yesterday I sulked and felt sorry for myself. Virginia Woolf said, “It is far harder to kill a phantom than a reality.” I was fighting a phantom over the last two days—that voice in my head that was trying to destroy my resolve and my faith and my strength. It wasn’t a reality and it WAS far harder to kill. Now I have a reality. I have breast cancer. I am that girl that Martina McBride sings about—“Cancer don’t discriminate or care if you’re just 38 with three kids who need you in their lives.” All the years I have listened to that song and now it’s me. I am that 38 year old with three kids. And yes it sucks. Cancer sucks.

This was not what I had planned. We have baseball and softball and track this spring and a great beach trip this summer and I’m going back to school this fall to get my teaching degree! I didn’t have "get cancer" on the calendar.

None of this was planned and none of this was something I ever wanted to go through. I have cried and I have been scared, but I have never once asked “Why me?” And I won’t. This happened to me because it’s part of my journey. It’s not what I would’ve picked for myself—a little trip to the Caribbean with endless little umbrella drinks would’ve worked out just fine for me—but that’s not what was put in my path.

In the coming days and weeks and months ahead, I refuse to be an Eeyore. I refuse to cheat myself out of my todays by worrying about tomorrow. 

While there is a lot of unknown right now, one thing that I know with complete certainty is that my amazing family and my amazing friends will be right by my side to love me through it. 

We got this.

-lightningbug