So it’s the night before my last chemo, and my husband has surprised me with a private screening to the new Jason Bourne movie that is not even out yet. I cannot tell you how much this excites me. I love action movies. I believe I owe this to my dad as I grew up watching them. Thank you Dad for introducing me. I am beyond thrilled. I have been obsessed with all of the Bourne movies, and I adore Matt Damon too. He is my Hollywood crush, and my cool hubby is taking me to see him. Who does that? Ummmmmm. My husband does.
We have a nice dinner before, but I can’t taste a thing. Not a darn thing. I don’t tell Chris. He has tried so hard, and I don’t want him to know that all I taste is cardboard. I lie and tell him it is wonderful. I hope I am forgiven someday.
Afterward, we head over to see the movie. I can’t wait to see it, and I cannot think of a better movie to put me in fight mode for tomorrow. The movie it turns out is not as good as I had hoped. I wish there were as many hand to hand fight scenes as there were car chase scenes. But Matt Damon is in all of them so I still give it an A. And more importantly, it did it’s job. I am ready to battle. So bring it on cancer. Tomorrow, I will be fighting Jason Bourne style!
I was coming back home from the hospital with my mom. I’m on one type of medicine that can effect your heart. So, although I am still sick from chemo and shouldn’t be out of bed, I drag myself to the hospital for some heart testing.
As I open the door to my home, there stand my two best friends, Stacie and Kara, from Kansas City who have flown in to surprise me. I have know them since we were children, and we are like sisters. I am in utter shock. My jaw drops. Are they really here? My purse simply drops to the ground, and I begin to cry like a baby. I mean full on heaving bawling. I’m surprised the neighbors don’t think someone has been hurt. I can’t help myself. I can’t stop crying and hugging my dear friends over and over again. It is just the best and most unexpected surprise I have ever had. It is perfection.
My husband has been in on this by the way. He had me totally fooled, and had told me he had to go into work to do some employee reviews. In reality, he was picking them up from the airport. My little liar. My cute little liar. I have to give him a 10 though, because I didn’t even know he had that in him. Sneaky. Sneaky.
Once I settle down and stop sobbing , we end up having the best time. They truly are just what the doctor ordered. I have been feeling really down with this chemo. The bone pain has been immense, but they make me laugh and laugh and laugh. I even forget for a while that I have cancer and I’m bald. I am just a normal Midwestern girl with curly red hair having some fun. Of course, we can’t actually do anything because I’m too weak and can’t really move very much. But we do go out to eat and get a pedicure one day.
I think the best part is, we don’t need to do anything. We’ve had a lifetime of friendship. We just love chatting, reminiscing and catching up. I beam from ear to ear the whole time they are here. I feel so special. It is something I will never forget. They have honestly cured me from chemo #5. After they leave, I am ready for the gym again. Best friends can do that you know.
Here I am on day 8 after chemo #5. I’m still in bed. My bone pain is so bad this time, I want to scream. And yet, I can’t help but feel I have this dirty little secret about chemo. So, I’m letting it out, because no one talks about it. It sucks! It sucks, and it sucks a little more. So here it is bone pain and all. This is what is happening with my body right now, and I have no control over it:
- I’m bald. I don’t even recognize myself.
- I’ve lost enough eyelashes that my eyes water 24/7 and are crusted shut in the morning.
- I’ve lost all of my nose hairs. My nose drips like a faucet.
- My left eye won’t stop twitching.
- My hands shake and shake.
- After my blood cell booster shots the day after chemo, my skin burns and aches. It hurts to touch.
- My bones ache. Every bone in my body aches and throbs so badly that I want to cry. I know it’s my bone marrow making more white blood cells but I really want to cry. I really want to cry.
- I’m dizzy.
- I’m nauseated.
- I can’t taste a thing. Chemo kills your taste buds. Food tastes like metal and cardboard. I can’t even do wine. It tastes like a sour lemon.
- My legs are so weak. Some days, I can hardly walk.
- I have crazy hot flashes. Sweat drips off my head. My cheeks burn bright red.
- Diarrhea. Diarrhea. Diarrhea. And then more diarrhea for days. I hope to laugh and laugh at this someday.
- I have huge dark circles under my eyes from not being able to sleep because of the steroids.
- I can’t concentrate very long. I forget my thoughts and words. They call it “chemo brain.”
- My head hurts. I feel like I’m in a fog.
- I feel like I have the flu and am seasick at the same time.
- I have acne. Yep. Acne.
- My skin peels and peels after each chemo.
- My port still hurts especially when I try to sleep. When I lie on my side, I can feel it. It feels like it’s hanging like a necklace, but on the inside.
- My mouth is so dry it feels like it has been burned inside. I’m not writing this for pity. I’m writing this for honesty, because if I am not honest then I am nothing. Chemotherapy has taken a huge physical toll on my body. But, it has not taken my spirit. So, when you look at this picture of me(in all my chemo glory), I hope that you don’t see my baldness, my drippy nose, my port or my dark circles. I hope that what you see is the fire in my eyes, because I am still fighting. And right now, there is a raging wild fire inside of me killing every single last cancer cell one at a time. I will not quit. I will not give up. I fight, and I fight.
Here we are again in the chemo ward. At this point, I know all of the nurses, and some of my fellow chemo warriors. I even have my own chair that seems to always be open and waiting for me when I get here. I guess I am a professional now. Polished, practiced and proficient at getting my water bottle, chapstick, tissues, cozy socks, sunglasses and iPad set up before they come for my port.
Today, I have my husband with me. I’m happy to have him because he’s been working so much lately, and I miss him. This is our chemo date. We have even brought champagne. Just kidding. Although this sounds like I could be on to something. Chemo and Champagne. C&C. Okay, I’ll stop.
So far, I have taken pictures at each chemo session to document my journey. Today, I had an idea to mix it up a little. I thought that since I have been going to the gym on my recovery week to keep my muscle, I could plank in the chemo ward while getting drugs put in my port. I know. This is an amazing idea. Chris thinks I’m crazy, but of course I’m going to do it anyway, because drugs make you do brilliant things. Once my happy drugs are really working, I get up on two chairs and begin to plank as Chris takes a few pictures. Suddenly, a few nurses wander over. Then the doctor, who saw me from across the room, comes over too. Apparently, they thought I was having a bad reaction and were ready to bring me back to the real world. They all looked very concerned until I explained what I was doing. The nurses looked relieved and went about their way. The doctor laughed and asked if he could take a picture. He said that he had never seen anyone plank in the chemo ward, and wanted it on record. Maybe I should call The Guinness Book of World Records? Yes! I held a plank for over 2 minutes in the chemo ward. I’m famous. Well, at least at UCLA Burbank Oncology, I am.
This week is my recovery week so I’ve been feeling a lot better. I decided that I was feeling good enough to take my two year old, William, to his speech evaluation appointment this morning. After a 30 minute drive, I pull into the parking lot 20 minutes early. As we are sitting there, waiting in my minivan(I used to be cool), I feel it. My stomach starts to rumble. OH NO! OH NO! OH NO! NO NO NO NO NO NO NO!!!! I have learned through the course of chemo, this only means one thing. I have about 60 seconds before Armageddon better known as the “D” word As I’m white-knuckling the steering wheel, I’m contemplating what to do. I look at the three buildings in front of me. I know I will never be able to get William out of his car seat and run in to a buidling that I have never been in before and find a restroom. I’m panicking. I don’t know what to do. I’m surprised the steering wheel isn’t screaming, I’m squeezing it so hard. Oh my gosh! What am I going to do? My heart is leaping out of my chest.
Then, I see it. Sitting on the passenger seat, is William’s diaper bag. Yes, that’s right. I see a diaper. My brain is contemplating this idea. Should I? This is so wrong. It’s so bad. Or is it brilliant? I can’t decide. I’m stuck. Crud. Okay. I decide to go for it. With about 10 seconds to spare, I hurl myself over the console and into the back of the minivan with a diaper. I pull my pants down, and use the diaper as my toilet. I confess. I really did it. I used a diaper in the back of the minivan while my two year old watched and jabbered at me.
Just as I was done, a car pulls in right in front of me and parks. Most people get out of their car after they park, but not this woman. She decides to do her make up and text. I’m staring at her in disbelief. Does she not know that I need some privacy? It looks like she is staring right back at me. I can’t decide if she can see me or not. I’m frozen. Is this even real? Oh my gosh. I still don’t have any pants on. I try and wait her out, but after ten minutes, she is still there. Seriously, how long does it take to put on make up? I can wait no longer. Here I go. I’m sure she will have a good story to tell.
The good news is that when there is a diaper bag, there are also wet wipes and plastic bags. I just never thought I would be using them on myself. I clean myself up, redress and then get William out of his carseat. I hold my head high as I walk right by this woman and into William’s appointment right on time. They say everyone has their horror story. This is mine.
Now, my only pressing issue is: Did I scar William for life, because he watched his mom go into a diaper in the back of a minivan? Or will he be mad, if he finds out that if the speech therapist said she smelled something, I was going to blame it on him? Either way. I’ll apologize in advance. Sorry William.
Last night, I was lying next to Patrick in his bed. I was singing to him and giving him kisses as I always do at bedtime. Just as I was done, he looked at me and said, “Mommy is your cancer gone yet?” His big blue eyes pondering such grown up things. And yet, it came from such place of innocence that I just stared at him in amazement. I smiled. I told him, “Not yet, but it’s getting smaller, and Mommy is working really hard to get rid of it.” He asked me how big it was. How do you explain this to a four year old? “That I have two tumors, and they were this many centimeters and now they are this many?” I know there is no way he will understand so I simply take both hands and put them wide a part. I tell him, “My cancer used to be this big but now it is this big.” I move my hands closer together. Then he takes his own hands and puts them together. He asks me, “When your cancer gets to be like this will it be gone?” “Yes. It will be gone. Mommy won’t have cancer anymore.” He smiled and kissed me. It was such simplicity. It was beautiful to see that in the eyes of a child putting two hands together solved everything. I went to bed last night thinking of everyone who has held my hand through this journey. I slept like a baby for the first time in weeks.
Blood work is good and chemo number four is a go. Woo hoo! Well, not really. I’m not happy about being poisoned again, and that I get to be horribly sick for the next 10 days. I am, however, mildly yee ha-ing and woo hoo-ing that I’m officially over half way done with chemo so a mini celebration is in order!
My mom has flown back in town and is with me today. So, let me just say this before my drugs kick in and my incoherent sentences begin. I’m so happy my mom is here and is going to take care of me for this round of chemo because my last round was so hard. I was so sick for days on end. You are never too old to need your mom. And right now, I need my mom.
Oh, here we go. It’s “eyes rollin’ in the back of my head” time. Yep, drugs are good.
Oops. My mom just got scared. Okay, I will try and keep my eyeballs straight. I will try. I promise.
Okay, I’m just going to say it. No one ever talks about it. It’s like a taboo word for some reason, but I’m just going to say it anyway. Diarrhea. That’s right. Diarrhea. Diarrhea. Diarrhea. I have it all day everyday and sometimes all night long. All night long. I hear ya, Lionel Richie. All night long. It’s been amazing.
Apparently, chemo kills all the good things going on in your stomach so there is nothing to regulate you. Nothing. Not even that good bacteria. And probiotics have not helped. Believe me. I have tried. So, for me, this has been possibly my worst side effect. I can’t get away from it. It haunts me 20 times a day sometimes. Ugh. I can’t go anywhere without a restroom close by because there really is no warning. It just comes and goes as it pleases.
I’ve been wondering why this is the side effect that has hit me the hardest, and I think I have it figured out. I didn’t know how to spell it. That’s right. I didn’t know how to spell diarrhea. So, it wanted to make its name known. Well, it has. I can officially say, I now know how to spell diarrhea, and I will never forget it. D-I-A-R-R-H-E-A. Let’s spell it one more time shall we? D-I-A-R-R-H-E-A!
Now, please go away. Pretty please.
I still go to the gym on my recovery week. I know it’s weird but I just can’t help it. It is my sanity and makes me feel strong. Plus, I get to put my kids in the kids’ club while I’m there so I can catch a breather. I know. I’m really smart. Whomever invented this kids’ club thing is a genius. Seriously, a genius. I may or may not even sit in the sauna a little longer to prolong my workout. Perhaps I do this.
So, after I drop the kids in the club for my “breather,” I head to the locker room. I put on my bandana, and a mask, and I go. The gym is the only place I have to wear a mask because let’s be honest, the gym is gross. There are so many germs. There is sweat dripping everywhere, and everyone is breathing on each other. Yuck. My immunities are really down from the chemo so I have to be very careful. The two times I didn’t wear a mask, because I thought I looked stupid, I got sick. Now, I wear it, and let the people stare. Who cares? Right?
Expect for today. Today, I was feeling really down, and it seemed like everyone was staring at me more than normal. I was sinking fast. Then, a lady walked right up to me and hugged me. I began to cry right then and there on her shoulder. I couldn’t help myself. She told me to keep fighting, and I that I could do it. She was such a gift from God today. Today, this lady, a total stranger, reminded that I am strong.
I am strong. I am. I will keep fighting. I will keep fighting. I will keep fighting. So, back to the gym I go, mask and all.
I just happen to be an extremely lucky girl and have a very special brother named John. He is mentally handicapped and is a rock star in the Special Olympics. He is my hero. John still lives in Kansas City, and does not know about my cancer yet. I know. My parents and I will tell him sometime. We just don’t know how to do it yet. We want to save him from the sadness. John tends to obsess over things and doesn’t handle heartache well. I don’t know if he will understand the depth of my diagnosis, but I do know that he will cry and cry. I know he will, and I don’t want to do that to him.
For weeks now, he has been wanting to Skype, but I’ve only talked to him on the phone because I have no hair. I have no hair. I know if he sees me in my scarf or bald, he will ask, and I won’t know what to say.
But today, I had my new wig(that two of my friends, Melody and Nick, sneakily surprised me with), and my mom and I had an idea. I was taking a chance, but I decided to Skype with my brother with my new wig on my bald head. I was nervous when the camera clicked on, but to my relief he didn’t even notice. He was just happy to see me. We just talked and talked and laughed and laughed. John really didn’t notice that I looked a little different. I was thrilled, and so were my parents. My new wig saved my brother from some anguish that his genuine big heart did not need to experience.
It has been a good day.