Un(W)hol(E)y

Last Sunday I had to go to Lowe’s and there’s this unwritten rule that when we go to Lowe’s in Lewisburg that we have to go to Sweet Frog for yummy fro-yo.

I had on my little gray cancer cap. That’s what I call it. Nobody wears a hat like that unless they have cancer. Sometimes I can hide the fact that I have cancer if I wear my wig and put on my eyelashes. When I wear that hat, I may as well have a sign on my forehead that says “I have cancer.” Wigs are hot as the devil’s butthole. I like to look normal. I do. But some days I could care less. I just want to be comfy.

After we got our fro-yo, I looked over and there sitting with his parents, was a little boy. He was probably about Wyatt’s age. He was cute as button. He looked normal enough. Then as I kept looking, I saw that he had braces on his legs and he had crutches. I don’t know what his health condition was that required leg braces and crutches and I hope it’s something that will be fixed soon for him.

That day I felt connected to that little boy. We both had physical conditions that made us appear less than whole. I got to thinking that day about all of us. You know, none of us are whole. We all have something that makes us un(w)hol(e)y. It might be something visible like a cancer cap or leg braces or it might be something internal that nobody can see. It might be insecurities or fear or addiction or grief. It might be any number of things. It was easy for me to see the little boy’s physical condition and for him to see mine. It’s not always easy for us to see inside others’ hearts. I got to thinking that day about how we might all feel more connected to one another if we took the time to look into one another’s hearts and to listen for the things that might just connect us as imperfect, un(w)hol(e)y human beings. 

Yeah, we should slow down and do that more. 

-lightningbug

Batt'n 4 Boobies Words...

On Saturday, July 23, the best friends a girl could have came out to play softball and support my cancer battle. I couldn't let them do all that for me without telling them what they all meant to me, so I said these words to them before the tournament got started:

February 19 is when I got the call. It was a Friday morning about 10 am. I was standing at my kitchen counter when the call came. The doctor said, “Unfortunately…” He really didn’t need to say anything after that.

I don’t think anybody expects to have a cancer battle on their hands at 38 years old.

I went to see a genetics counselor soon after that and I found out that my specific type of breast cancer is something called triple negative breast cancer. The short version of that is that the drugs that are often used to treat breast cancer won’t work on me. Triple negative makes up 10-20% of breast cancers and has a lower 5 year survival rate compared to other breast cancers. That appointment with the genetics counselor was probably the hardest appointment for me. There was so much information and it was TOUGH information—information that I didn’t want to hear. I was so overwhelmed and discouraged and truly terrified.

I told my family and close friends that weekend and I knew my name was about to go on prayer lists around the community on Sunday morning and while I welcomed that completely, I wanted the news to come from me.

That Saturday, I wrote my first breast cancer blog that I called “In a World of Eeyores, be a Tigger.”

I ended that blog with the phrase “We got this” which came to be my mantra throughout this journey. WE got this—not me, but WE. My family, my friends, my community, complete strangers, a little of me, and above all, God.

I have been called a hero and strong and brave and all that and that’s totally sweet but I don’t believe I am any of those things. I am just a girl who loves her life and wants to do whatever it takes to stay here for as long as I possibly can. You may not know it right now, but you would do the same thing.

Since the beginning, I have said “This is part of my journey.” It has taken my strength, my money, my peace of mind, my tears, my hair, my taste buds—and on August 10, it will take my breasts.

And all that stuff really stinks and I could choose to be angry or sad about those things, and occasionally I AM sad about those things.

But what I wanted to tell you about today is not what cancer has taken from me, but what it has given to me. Sounds crazy, huh?

The Saturday that I wrote that first blog, I got a Facebook message from a friend. I was up at Edgemont school walking that day. I felt great. I didn’t feel like I had cancer. It was a crisp February day, a sunny day after a week of heavy snow. My friend wrote to tell me that her sister was a breast cancer survivor and if I ever wanted to talk to her, that she was sure she would be willing to talk to me. I gave her sister a friend request that day and she has been there for me just like a big sister from that day on. So many breast cancer survivors have reached out to me throughout the last five months. 

I have received hundreds of cards and just as many emails since my diagnosis and they have been a tremendous source of encouragement for me. I always laughed when people would say “I know you’re probably sick of hearing this…” No. I never have gotten sick of hearing that you are supporting me and praying for me and cheering me on.

I have been given so many gifts! Holy cow! You guys have been so generous to me and I appreciate it more than I can ever tell you! Money, meals, services, all sorts of care packages, along with so much love. You all are incredible.

My best friend and soul mate Deana has been with me the entire way. She has cheered me on and she has dried my tears. She has been with me to every appointment, she has prayed with me and she has cussed with me.  She has never left my side.

My husband and my kids and my parents and my in-laws and my neighbors and so many of you have gone above and beyond and I am so grateful to you all.

I hate wearing shirts that show my port. You would think a mother would be a source of confidence and empowerment for her daughter, but the opposite has been true. Natalie has been there time after time to tell me that I am beautiful even with no hair and an ugly port sticking out of my chest.  My boys have been so protective of me and have chipped in to help with whatever I needed.

Kevin has had to be mom and dad at times. He has taken over most of the chores at home on top of everything else. I jokingly call him Hazel the housewife.

You all get to read about twinkling, happy lightning bug and He has had the misfortune of catching grumpy, weak, barely twinkling lightning bug on so many occasions. I am grateful for his love and patience.

You would never believe this, but sitting in a room full of people getting chemo was a blessing. You will be hard pressed to find better people than the ones you encounter in the chemo room. It is truly a humbling experience. My oncology nurses were absolutely incredible. I believe wholeheartedly that people have been strategically placed in my path throughout the last five months—I think that’s one of the coolest things God has done for me. The people I have encountered haven’t been by chance. They were meant to cross my path.

You know…You don’t have to have cancer to slow down just a little and breathe in what is all around you. That Saturday that I told you I was walking up at the school—I took pictures that day of the water and the birds and the sky. It all looked so very different to me. I had different eyes that day. I have become a lot more in tune with the simple things since the big C came along.

That Friday morning in February, I was so nervous as I awaited my biopsy results and that was the day that my daughter said “Hey mom, come look at these birds!” I walked to the front door and the cardinals were perched in my maple tree. Two cardinals—a male and a female. When I looked out there I smiled and this peace that I can’t even describe came over me. Natalie went to school and I pulled out my laptop and googled, “what does it mean when a cardinal visits.” This is exactly what I found when I looked it up, “A cardinal is a representative of a loved one who has passed. When you see one, it means they are visiting you. They usually show up when you most need them or miss them. They also make an appearance during times of celebration as well as despair to let you know they will always be with you. Look for them, they’ll appear.”

I lost my grandparents in 2013 & 2014. I was super close to them and I know in my heart who sent those red birds.

I urge you today to look for the cardinals…not just the cardinals but to look at the beauty of nature and your children and the dew on the grass and everything around you with grateful eyes. I promise you that will make a difference in your life.

This week I started thinking about how to convey to you all what you have meant to me throughout this journey. I hopped in the shower one day and I heard the childhood chant from the game Red Rover going through my head. Remember that game? You would stand side by side with one another and link hands and call for someone to come over? Red rover, red rover, send Johnny on over. And Johnny would come barreling through trying to break the links and penetrate the line. Sometimes he would make it and sometimes he wouldn’t. It all depended on how tight those links were. Cancer made it through those links and invaded my body. Then all of you all—my friends and my family and some people who don’t even know me—came together and tightened those links and at every turn when cancer tried to get through and destroy my mind or my spirit, your love has been the strength that has kept that cancer out. I could not have done this without all of you. You inspire me every day.

I have completed eight rounds of dense dose chemotherapy and on August 10 I will have my surgery. If my cancer is gone (which I believe 100% that it is,) my prognosis is in the upper 90% range.

Thank you to everyone who has been a part of this event and blessings to each of you who have come out to support me!

We got this!

-lightningbug

Hair in curlers kind of life...

It has been a while since I wrote last! That’s a good thing! That means I am busy living! I am all finished with chemotherapy. Hallefreakinglujah on that! Now I am in r&r mode for six weeks awaiting my double mastectomy.

I still have side effects from the chemo. I have had some neuropathy. Neuropathy is disease or dysfunction of one or more peripheral nerves, typically causing numbness or weakness. The peripheral nervous system is a network of 43 pairs of motor and sensory nerves that connect the brain and spinal cord (the central nervous system) to the entire human body. 

So. What’s that mean? Well, I can’t feel my fingers and toes a lot of the time. I have a constant eye twitch that is driving me BONKERS! That’s from the chemo. I go from hot to cold worse than a menopausal woman! I freeze to death and put on fleece pjs before bed and then halfway through the night I’m sweating and stripping down and throwing all covers off. My body is all out of whack. My legs have lost a lot of strength so walking long distances can be challenging. All in all though, I’m doing great. I have bad days and sometimes I even get mad that I have felt so great—or “forged on even when I didn’t feel completely great” is probably a little more accurate.  I think my family and friends sometimes forget that anything is even wrong because I try to keep up with my life as much as I can. And that’s a good thing! Having a husband who wouldn’t let me lay around and feel sorry for myself has actually been a great thing. Did I ever tell about the time I was resting on the sofa and he came inside and wanted me to come outside and TRIM THE HEDGES? I seriously wanted to take the hedge trimmers and cut his head off. I was so mad that he would wake me up when I was resting and actually ask me to trim the shrubbery! But looking back, those are exactly the kind of pushes I needed throughout this battle. Those are the kinds of things that kept me active and hopping!

Finishing chemo seemed surreal. It was surreal that I even had cancer but then it was surreal that I had endured 16 weeks of really harsh chemotherapy and it was now over. The staff at Blue Ridge Cancer Care is amazing and I hope none of you ever have to go through cancer care, but if you ever do, I highly recommend them. They are knowledgeable and loving and caring and that is a wonderful mix! Chemo was never a sad or morbid time for me. It was actually a FUN time! It was a chance to connect with others going through the same thing and it was humbling and I sit here and reflect with tears in my eyes…I will take those experiences with me for the rest of my life. 
Everybody has a story. Take time to slow down and listen. Really listen. 

I went to Florida between my last two chemos! Who does that??? I do! My Kansas cousin met me and Nat and we stayed with our aunt in Florida and we had such a wonderful few days! It was long overdue and I am so glad we got to do it! Cancer has a way of freeing your calendar for important things like spending time with family.

The sucky part is that the thousand year flood decided to come on the day we left. We barely made it to the airport and while we spent our dry, sunny days in the sunshine state floating in a pool and eating grouper, our hometown and surrounding areas were living a nightmare. When I left the house, our house looked like an island in the middle of a lake and our basement had several inches of water. After all was said and done, we had about 9 or so inches of water in our finished basement. 

We lost three trailer loads of things. Kevin had to pull up all of the carpet. Riley’s bedroom was in the basement. He lost his dresser and chest. I lost two pairs of Uggs which devastated me. I got water in my hope chest. We have no doors downstairs now and the walls had to be cut about a foot from the floor. Basically we are starting from scratch again and that sucks but we will do it with an attitude of gratitude, thankful that our house is still standing and our family is intact.

Tomorrow morning we leave for Myrtle Beach! Yippee! The Crushers have been planning and fundraising for a year now to make this trip happen. The Crushers are an extended family. Yes we play baseball but we also are a group of people who spend a great deal of time together making memories and loving one another and that is a really special thing that you don’t find everyday. I’m so proud to be a part of that group!

1. Yesterday my dad went to the doctor and he found out that he has “narrowing of the aorta.” More testing and then go from there. 

2. Kevin and I bickered over stupid crap yesterday. 

3. And for the finale, Riley’s car took a trip across our front lawn, through the ditch, across the highway and into the ditch across the highway yesterday with nobody in it. 

So yes. I had a very bad day yesterday, but even in the crappy days, we still have so much to be thankful for! 

1. I am beating cancer! 

2. Riley’s car wasn’t damaged. Nobody was injured!

3. We are all alive and well and "this too shall pass!"

When I went to the doctor on Tuesday, there was a lady in the waiting room with her daughter. She reminded me so much of my grandma that I actually cried in the waiting room. It was her voice and just the way she talked. Her daughter was asking her about pictures from when they lived in Michigan. The daughter said, “There was one of you with curlers in your hair.” That triggered the lady’s memory and she said yes she had those. For some reason, the thought of the daughter treasuring that picture of her mama in curlers has stuck with me. Our loved ones don’t care what we look like. They only care about our hearts. When we look back in 50 years, it will be those “hair in curlers” memories that will be the nearest and dearest, not the dressed to the nines selfies.

Momaw’s spirit was very strong that day. I know she has been with me every step of this journey. I know she has heard my cries and I can just see her running barefoot (I have no idea why barefoot but that’s the way I see it) to Jesus and telling him that her precious granddaugter is in need of healing and peace and getting all of heaven organized to get me well. I have no doubt in my mind about how that all went down! 

I have no doubt in my mind that the reason I have done so well with these treatments is not because I am “so strong” or “brave” but because of all of the prayers that have been humbly surrendered on my behalf. I can’t thank you all enough for that.

August 10 is surgery and I will know if the cancer is gone then. Your prayers have gotten me this far…our next united prayer is CANCER FREE on AUGUST 10!

#wegotthis

-lightningbug

Meet Brownie...

Meet Brownie.

He came into my life about 35 years ago. He has been through just about everything imaginable with me. Check out his eyebrows and his nose and his eyes and the wear and tear around his old mouth. He is showing his age. My Momaw sewed his eyebrows and his nose back on more than once.

I was downstairs in Leggett on Main Street with my mom when I was only about four years old. I actually remember this. I can almost see how the store was set up. Isn’t it funny what we remember? This little brown dog was sitting on top of a rack of children’s clothing. I fell in love with him. I can’t remember if my mom bought him for me or if we ended up going back after him on a subsequent trip, but Brownie came home with me. I wanted a real puppy from the time I can remember but I got Brownie until I was old enough for a real puppy.

Brownie was my buddy. I am an only child, so loneliness was something I struggled with. I had lots of neighborhood friends to play with and was socialized well, but it’s still not the same as having a sibling in the house. Brownie was my playmate when I was young and as the years progressed, Brownie developed a different persona.

My dad and I have always been really close. We may have a lot of differences, but I would say our hearts are the same. I was a very shy child—an introvert. I bottled a lot of things up and it has always been like pulling teeth to get things out of me. I would say I still have many of the same attributes. I have turned to writing for as long as I can remember because that’s the easiest way for me to get my feelings and thoughts to make sense.

My mom and dad fought a lot when I was growing up. I’m not writing tonight to blast my parents. It’s just a reality. They’re divorced now and should’ve done it way before they did, but life is tough and you do the best you can and when you know better, you do better. My mom and dad fighting was just one of the many childhood stressors—we all had stressors of some sort. When I would get all tucked in for bed, my dad would come in and sit on the edge of the bed and say prayers and he would make Brownie “talk.” And he used his voice but made it a super high pitched voiced and Brownie would talk to me about things that might be bothering me. Brownie has talked to me about my parents, broken hearts, girl drama, and a million other things that I can't even remember. What I remember is that I could talk to Brownie about things and open up when I couldn’t talk to anyone else. It was genius parenting and I have no idea where my dad learned that or if it was a complete fluke. Regardless, it worked.

Papi and I have been spending a lot of time together this week. He is really trying to take care of his mom. Tonight he made me popcorn and apple juice—my favorite lately. He has become really protective of me. Tonight he went to his room and got Brownie. (I passed Brownie down to him a few years ago.) Brownie did a lot of whispering in my ear tonight. He told me to tell Papi that he is doing a wonderful job of caring for his mom. He told me to tell Papi that he doesn’t have to worry about mom because she is going to be just fine.

And just like that…Brownie…a little stuffed dog is once again bringing love and comfort. I have no idea what my mom paid for that little brown down in Leggett but I assure you that it was worth every penny.

-lightningbug

Morning Musings...

Saturday, June 4, 2016. 

I had chemo last Tuesday. The chemo I am taking now is called Taxol. It’s supposed to be easier than the first four rounds and I guess maybe it is in some ways. Taxol has its own set of challenges, however. You’ll remember last time I told you about my intense muscle and joint pain. My oncologist said he was afraid I might experience that and he seems to see it more with younger women. He felt that the second one wouldn’t be as bad. And so far the second one hasn’t been as bad but when I hear “I don’t think this one will be as bad” I actually hear “I think you will feel so great that you will be able to go out and jump hurdles!” Not exactly what he meant apparently. Last night it started to hit me and today it has continued to hit me. I ached from about 3 am up until I got out of bed at 7. I ran a hot bath and put some muscle soaking salt in there and hopefully it will help. In addition to my legs aching, I also am getting these shooting pains in my head. That’s always fun. Sigh. As if it’s not enough to have cancer, then you get to think you’re also having an aneurysm! Ah. Good times! I hate not being able to get up and do what I want. It’s definitely frustrating. I know I will feel better by Tuesday if I can make it through these next couple of days—it’s just getting through the yucky days.

The other thing that is annoying these days is my tasters are completely off. I have no appetite. You have to eat when you have cancer because you need your nutrients and your strength yet I want nothing right now. Get this. I haven’t even drank coffee for three days. I have been drinking apple juice because it tastes good to me. That is just plain insanity right there! And I’m hungry! I sit around and think hmm, wonder what I could eat that would taste good to me? Last week it was watermelon. I had an ice cream cone yesterday and even that didn’t taste good to me. It’s frustrating. I can’t wait to taste again. I love food and coffee and doughnuts—you know I haven’t had a doughnut in probably two months? That’s just crazy talk! 

Safe to say I'm pretty sick of having cancer. I’m just over it. It sucks. And then I feel guilty because I think of all the people who have an illness that won’t ever be over—it will be a constant fight forever. Rest assured my fight is not all sunshine and rainbows. Sometimes I have dark clouds and thunder just like everybody else. I just try not to let it stick around very long.

I am having some neuropathy—my fingertips are numb and tingly. I had this after the last treatment but it went away before I took the second treatment. And I am so tired. I worked Thursday and I came home and I went to bed at 5pm. I was just absolutely zonked. That usually seems to get better by Tuesday so that gives me a week of feeling decent before it’s time to go back. The good news is I only have to go back two more times! My next chemo is on my 39^th birthday! They offered to reschedule it but the truth is that knocking out one more chemo is the best birthday present I can get. After that one I will only have ONE MORE!!!

I think I have explained the process, but several have asked so maybe I haven’t. After I finish my chemo (last week in June), I will rest for a period of four to six weeks. That just pretty much gives my body time to chill out and get ready for another hit. I will go back to see my breast surgeon after I finish chemo and she will check things out and then get things rolling to set up my surgery (should be August.) The surgery will be done with my breast surgeon and my plastic surgeon and will be about a four hour surgery.  I am having a bilateral mastectomy with immediate reconstruction. What does that mean? Both boobs are going adios and they are putting in a balloon like device behind the muscle that they can access to fill with a salt water solution every week or two. That will allow everything to stretch over time and then in about three months after that surgery, I will have another surgery to remove the balloon device and have silicone implants inserted. There’s a chance more surgeries will be required but I am being optimistic that everything will go great.

The surgery in August will be the hardest part of all of this. I will be out of commission for a couple of weeks and knocked out on some strong pain meds. I don’t look forward to that because I am a bit of a control freak and I have NO IDEA how life will POSSIBLY go on without me for two weeks (think highly of yourself much, Amanda??) Gotta do what you gotta do I suppose.

Now that I have told you how I’m feeling and what the next few months hold, I have to tell you about the FUN upcoming stuff! And there is all kinds of fun stuff!

Our baseball team has a tournament in Myrtle Beach in July! I wasn’t sure I would be able to go after my diagnosis, but I should be good to go! I'm so excited! Rest and relaxation, salty air and sunshine = best medicine for Amanda. Anybody who knows me knows that is my 100% happy place.

The Battn’ for Boobies Softball tournament that my friends have organized will be July 23 at Jackson River Sports Complex (get registered if you haven’t!) It's way more than just a softball tournament so even if that isn't your thing, be sure to come down and hang out with us!  

The Covington Lumberjacks are having a breast cancer awareness night on July 26! Be sure to come out for that!

And last but not least, I am having a Bye Bye Boobies party at The Rail on Friday, July 29. I have had the most AMAZING SUPPORT throughout this journey and this is my chance to say thank you to everyone. Be sure to come to The Rail and bid my boobs a fond farewell…a Boob Voyage…Ta-Ta to the Ta-tas. More to come on that later!

If I could only figure out how to bottle up the support that this community has shown me, I would give it to every person who is battling cancer. You all have done more for me than I can ever express.

-lightningbug

Everybody needs a Waylon in their life...

Last weekend we had our annual Memorial Day Crushers’ baseball tournament in Richmond. I wish I could tell another story like I did about our tournament last year when we came from behind on Saturday and won the thing on Sunday Click here to read that story but unfortunately it just wasn’t in the cards. We lost the first game on Saturday, won the second, lost the first on Sunday and then won the second. We didn’t hit the ball…it just wasn’t our best or favorite tournament. Better Crushers days ahead!

During the first game, I sat out in the grass behind centerfield with my friend Melody.

Sorry, I can't say centerfield without listening to this song! Enjoy!

I’m more sensitive to sun right now, so for that game I watched from out there under some shady pine trees. While we were sitting out there, Melody told me a story about their trip to King’s Dominion. (Several of the Crushers and families hit King’s Dominion on Friday before the tournament.) My kids went but Kevin and I stayed behind—I knew I wasn’t up to all that walking with my fatigue right now and I wasn’t sure how much I wanted to tempt fate getting on the Dropzone. I am already beating one thing that’s trying to kill me, I probably ought to stick with one thing at a time.

Well Mel told me that they got on the Flight of Fear coaster. She was riding with her son Eli and one of our kid’s dads was riding behind them. Eli was scared to death and Mel was trying to ease his fears by doing what most people would do…in that watchful mom voice she told him it was going to be just fine and she was right there and he was safe and yet he still was scared to death. Well Waylon (Campbell) must’ve heard what was going on and after the thing took off, he raised up his hands and yelled at the top of his lungs, “Wooooo Hooooo Eli! Isn’t this GREAT? This is so much fun!”  Well lo and behold if Eli didn’t become fueled by Waylon’s excitement and optimism and he must’ve thought hmm…maybe this is fun after all…and from that point on it was all smiles.  Melody couldn’t believe it.

As soon as she told me that story I told her that I had to write about it. That story immediately reminded me of life. How many times in life do we face scary things…unknown things…things that we aren’t sure whether we want to try because it’s a leap of faith or things we have to do because we have no choice? 

When I made my note to tell this story, the text I sent myself was “Everybody needs a Waylon in their life.” Everybody needs someone that can recognize when you are fearful or struggling and then stand next to you, throw their hands up in the air and scream “Isn’t this great?! Isn’t this fun?" Do you know I have fun when I go to chemo? True story. There hasn't been one single time that I haven't laughed and smiled and made someone else laugh or smile. Chemo isn't fun, cancer isn't fun but in all things, we have an opportunity to make the best of the hands we are dealt.

If you don’t have a Waylon in your life, then maybe you could start being a Waylon. If you see someone struggling…throw your hands up in the air and holler “Isn’t this great!”

I have learned so much throughout my journey over the last four months. I have so many people standing with me fighting this battle and so many of them are very similar to Waylon. No, nobody is hollering exactly, “Isn’t this great” as I’m going through this but rather, they are saying “We got this!”  

I went down to the ballpark last night to pick up Papi (he was watching a ballgame with Waylon and Kelly and the rest of the gang!) This is probably the first time I have been among so many people in one place that I know since I was diagnosed. And I didn’t have my wig on or a hat or anything else. I just had my sparse blonde spikes which I am rocking a lot more now since it has warmed up. I don’t always feel confident when I’m out in public without something on my head. I know strangers sometimes glance a little too long and I would be lying if I said that didn’t make me feel a little weird sometimes.

There are strangers...and then there are my friends. I walked in that ballpark and my friends made me feel like a rockstar! You would’ve thought I got out of limo at the sidewalk instead of the 1996 Honda. So many people ran up to me and hugged me and told me how great I look and told me how I was kicking ass and told me that they would never in a million years know that I had chemo just a couple hours ago if they didn’t know! And as I looked around, I saw pink Team Amanda bracelets everywhere I looked. All I could think as I looked around is although you all didn’t literally have your arms up in the air hollering “Isn’t this great”, by supporting me in the way you do, you have lessened my fears and anxiety in ways you may never understand.

Through this journey I have had so much support from friends and family, from people who do not even know me, from ladies who have gone through this and have helped and encouraged me, from my nursing staff, from schools, ball teams and churches. You all are being Waylons. You turn my fear and anxiety into excitement and hope. You turn my bad days into good days.

I have two more chemos! TWO MORE! Can y’all even believe it?!

#wegotthis

-lightningbug

Looks Can Be Deceiving...

Today I changed my Facebook profile picture to a pic I took on Friday. I was feeling good that day. I had on a cute outfit, I had on my short blonde wig, the sun was shining on my aviator sunglasses wearing face and I had on just the right shade of lipstick to make my teeth look like they were just professionally whitened. I was feeling good.

Friday evening I started feeling less great. My legs began to feel achy and I just wasn’t feeling like my Friday morning profile pic self. Riley was running at Botetourt and I wanted to be there so bad and I just couldn’t make it. I crashed that night and when I woke up the next morning, I was determined to make it to day two of the track meet. I got up and showered and my muscles were aching so bad and I was so weak that I could hardly make it from the bed to the bathroom and back. I was still determined to go to the track meet because I felt like I had let Riley down the day before. He qualified for regionals on Friday with an 11:14 time in the 2 mile, shaving 23 seconds off of his previous PR. I showered and put my bathrobe on and got back in bed. I was so weak that I wasn’t sure how I was going to do this. Kevin came in and told me that I needed to stay home and rest and that he and Natalie would go to the track meet and Riley would understand. I knew Riley would understand because he came in on Friday night and asked me how I was feeling and he told me if I wasn’t up to it, to stay home and rest on Saturday. He’s such a good kid and I’m so proud of him. I wanted to be there so bad—on both days. This has been one of those weekends that I have been really mad at cancer. I have tried to keep a good attitude the entire time and roll with the punches, but this weekend, I felt defeated. I stayed home on Saturday and I slept most of the day. I got up and got in the hot tub at one point because I thought it would make my muscles feel better (the hot water seems to help) and I almost fell asleep and then I had to figure out how to muster up enough energy and leg strength to get myself out of the hot tub and back in the house. It probably wasn’t the best idea for me to have even got in the hot tub when nobody was home yesterday, but I wanted to feel better. Along with the muscle pain and weakness, I did the hot and cold thing. That has been an ongoing cancer thing. I asked Dr. K about it last week and he said that is normal. One minute I am burning up and the next minute I am freezing. I go from a cami and shorts to full blown fleece mitten pajamas and fuzzy socks—and back and forth and back and forth. One minute I want hot chocolate and the next minute I want a popsicle. I was asleep most of the day until about 1 pm. My dad came down and sat with me for a couple of hours and Lord only knows what I said to him because I was kind of out of it! Ha! I know he was so worried about me. He just wants to be able to fix all of this and the parent in him feels really helpless when I am just laying on the sofa in pain. He wanted me to call the doctor, but I told him that the muscle pain was a side effect that I was warned about and I may just have to deal with it. Last night I decided to go lay down around 7 pm and the next thing I knew, I woke up and looked through the crack in the blinds and it was dark outside! It was 9pm! I didn’t mean to sleep that long! I woke up and wanted a lime Mister Misty from the Dairy Queen. Do they even make those anymore? Apparently I was transplanted back 20 years ago during that nap! I got up and asked Kevin to go to Whitey’s and get me a slushie and he thought I had lost my mind. I’m sure he would’ve gone if I would’ve pressed the issue, but I settled on a popsicle and called it a day. I slept all night minus the hot and cold thing and woke up feeling much better today. I am still pretty weak but I don’t have that horrible shooting muscle pain that I had yesterday.

So what’s the point of today’s blog?

Looks can be deceiving. I posted that bright-eyed and bushy-tailed Facebook profile pic this morning and if you didn’t know I had been in bed for practically 24 hours straight, you wouldn’t have known. I look fine. For the last two days as I have been suffering from the muscle pain and weakness, I have had those with MS on my mind so very much. Yes cancer sucks, but hopefully after I endure three more chemo treatments and two surgeries, I will start to recover. I will get better. I had horrible muscle pain and weakness but it will get better. I will be able to be at the track meets next year—I will hopefully get increasingly better and stronger, not increasingly worse and weaker. I can’t even begin to tell you how frustrating it has been to want to get up and walk and to be unsure whether my legs are going to hold me or if they are going to buckle underneath me. My thoughts and prayers go out to those suffering with MS—how difficult and completely frustrating it must be to be living in a body that looks fine on the outside, but is far from fine on the inside. I wish no one had to endure MS and I hope and pray a cure will be found soon.

-lightningbug

Nothing Will Ever Really Be the Same...

Today was Chemo Day number five. My chemo regimen consists of four rounds of drugs Adriamycin and Cytoxan and four rounds of a drug called Taxol (total of eight treatments every other week for a total of 16 weeks.) I will finish up at the end of June. I began Dose Dense Taxol today and my biggest fear was an allergic reaction. I was made aware of increased allergic reactions to Taxol. I have prayed and prayed that I wouldn’t have an allergic reaction to this medication. Today I met with my doctor and he seemed pleased with where I was and how I was responding to treatment. He told me that he thought this drug would be much easier on me and also I will no longer have to come in the next day for the Neulasta shot (I sometimes think the Neulasta shot was harder on me than the actual chemo!)

As I sit here and think about what I am feeling and what I want to share, the tears just roll down my cheeks.  I have learned so much over the last few months—about myself, about the human spirit, about generosity and selflessness, about faith, about family and friends, about my community, about cancer and those who are going through it and those who have survived it.  

As with every chemo and every appointment, my best friend has been by my side. Because today’s treatment lasted so long, she had to leave to get her kids from school and I was by myself for a couple of hours. Not long after she left, I missed her! I thought about how lucky I am to have her by my side every step of the way—to listen to my irrational thoughts, to cry with me that one time in the car (yes, we only cried together one time over this), to laugh with me, to ask questions, to insist that the doctors run every test imaginable so I will not worry, to untangle my tubes so I can go to the bathroom, to get me Lay’s and ginger ale, and most of all, to just be there. Always.

There’s a girl who takes treatment on the same day as me and we do not even know each other’s names but when we see each other, we light up and there’s a shared bond that’s really kind of unexplainable. We’re both going through the same thing. I think about how exciting it will be when she finishes and when I finish and we can blow that popsicle stand, but as weird as it sounds, I have spent crucial time with these people and it’s going to be hard to leave them all (the nurses, the staff and the patients.) I have compared fighting cancer to being a soldier and although I don’t know if I am right about this, I suspect that when a soldier gets to go home to his or her family, it’s the most wonderful thing, but at the same time, there’s that same feeling of leaving those you have served alongside through some of the scariest and hardest times of life.

I am 5/8 of the way through this part. I will have my surgery in August and then my second surgery will be in November. I have said that I just want to get this all over with so I can get on with my life and have normal dilemmas once again like what am I going to cook for dinner and who can get the kid from practice tonight. 

While I won’t have to go to chemo every other week or have the side effects or have drain tubes or all the other things that are happening now and in the future, this will now forever be a part of who I am. Nothing will really ever be the same as it was because I am no longer the same as I was. My friendships are deeper, my gratitude is richer, my faith is deeper, my family is stronger, and my priorities are realigned.

I still hate doing dishes and cleaning the toilet. I guess some things are still the same.

-lightningbug

Chemo Brain

Someone said to my dad last week, “I thought Amanda must be feeling bad because she hasn’t written in a while.”  The truth is I haven’t been feeling as good as I was the first six weeks. My allergies have really added to the being worn down thing. I blow my nose around the clock and now I have a cough that sounds like I have the pneumonic plague. Saturday I was showered and dressed and ready to go to a lemonade stand and then on to a birthday party and I started getting chills. I ended up running a fever that day and night. Seems it was probably something viral. It has taken me a few days to bounce back from that.

I’m tired, I don’t focus on things so well, I’m coughing every breath. I know. Sexy. A pajama wearing, forgetful, nearly bald woman with the whooping cough.  And I can't taste anything. Coffee is bland, pepperoni pizza is bland, Fruity Pebbles are bland. Doesn't really matter, I haven't been hungry in a few days anyway. I am making myself eat but the desire isn't really there.

I’m halfway through my chemo. I’m so ready to be done with it all. I’m starting to feel impatient I think. I just want all this to be over with so I can move on with my life. The warm weather has caused me to think about being outdoors and I want to revamp my back patio and I want to get a load of mulch and get my landscaping done. I want to repaint my kitchen cabinets. I have a ton of different projects I’d love to get into, but I just don’t have the energy to do them right now.  And that is very frustrating to me.  I am trying to just listen to my body and go when I feel like going and rest when I feel like resting.

I’m looking forward to the school year finishing up so I can have my kids at home. They will fight and tear the house to smithereens, but I still like having them at home.

I’m tired and this blog was nearly pointless tonight but that’s kind of how I have been for the last week. Hopefully my cough will let up and I will regain a little energy and be back to my usual shenanigans in two shakes of a lamb’s tail!

-lightning bug

Hide it under a bushel, NO!

Last weekend was a great one! The Crushers had a baseball tournament in Christiansburg. Nothing beats baseball weekends and this tournament really got it kicked off! In addition to the Crushers playing, our nephew Alex Griffith, who plays baseball for the Pitt Panthers had a weekend of games at Virginia Tech! We were only able to catch about an hour of Pitt baseball because of our schedule, but what great fun the boys and all of us had!  Our entire Crushers baseball team went over to English Field and Alex and his buddy Tyler Garbee entertained all sorts of questions from our squad.  Our guys were star-struck! I remember having those same feelings when I was a young girl, watching the UVA Women’s Basketball team!

One of our little guys told Tyler that his dream was to play in the MLB and instead of dismissing him or laughing, he replied, “You hold on to that dream.”

I’d be lying if I said it didn’t make this ole sappy mom get teary eyed.

Alex reached over the fence and gave me a hug when I got there. I hadn’t seen him since Christmas and I hadn’t received my diagnosis at that time. Alex is our first-born nephew and will always hold a super special place in our hearts. He’s handsome and talented and polite and has a good heart and we are so proud of him.

Later that night, all of the Griffiths (minus Papaw, Riley, and Zackary) were able to meet up for dinner and it was great! Alex brought me a special gift—a baseball signed by the entire Pitt baseball squad!  It’s an absolute treasure to me!

We had a great weekend even though we didn’t bring home any Crusher bling this weekend. Sometimes losses have more lessons packed in them than wins and I think this weekend was one of them.  We had a great devotion on Sunday and once again, I’d be lying if I said this ole gal didn’t have tears streaming down her cheeks.  Funny how just the right message is sent when you are listening.

We finished in third place that weekend and we stopped by the Cracker Barrel for some dinner Sunday evening.  We were doing what we do—goofing off in the gift shop—Kevin was asking the hostess if he ate the candy before we were seated if we had to pay for it. Sigh.  Welcome to my world.  I looked up and a man had kind of circled around me. I was wearing my gray hat that day and he asked, “Is there any particular reason that you have that haircut?” I looked at him, kind of shocked, and replied, “Yes, I have breast cancer.” He looked kindly at me and then he turned his eyes to his wife and held out his hand toward her. He told me his wife also was battling breast cancer.  She had gone through all of her chemo and was now taking Herceptin. The couple was from Franklin County and they had been down in Hampton over the weekend visiting family. The lady and I chatted and it was quite emotional. I’ve said it before that it’s a sisterhood that nobody wants to be part of, but once you are, the bonds are deep—even between two strangers.  We wished one another the best and parted.

The following day, I attended a funeral--the funeral of a good friend’s father. It was a beautiful celebration of life. As the service proceeded, I tearfully took in my surroundings. I watched a son comfort his mother and I watched family members hold one another up. I watched friends gather in support. 

This last week has been a reminder to me of how important human relationships are and how we are created for them. We are created to love.

“But love, I’ve come to understand, is more than three words mumbled before bedtime. Love is sustained by action, a pattern of devotion in the things we do for each other every day.”― Nicholas Sparks, The Wedding

This week was a chemo week. Chemo went well. The kids weren't feeling well so I took them to the doctor and Riley has the flu. It’s making things a little more stressful at home this week while we sit on pins and needles in dread that someone else will get the flu.

I went to work today and around 2 pm, I told Deana that I was going to go on home because I could hardly hold my eyes open and I just couldn’t understand why. She laughed and said that it was hilarious to her that I couldn’t understand why I was so tired with everything I have been through.

I have had such a great couple of weeks that I was expecting the rest of this to go just as smoothly. Today everything caught up with me. I was sore from the Neulasta shot and I was dog, dead tired. I went home and took a nap. I know I will have days like these from time to time, but they are frustrating. Tomorrow is a new day. 

-lightningbug