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