27 January 2014

Doctor Day

He burst through the door like he was Kramer from Seinfeld. His smile was huge. He wasn't acting very doctor-like. 
"You've GOT to be feeling better?" 
I paused. I was afraid this was going to happen. The question hung there, screaming at me. Mocking me. 
"Your labs are the best since I've been treating you."
It's true. Amazing, awesome, fantastic, breathtaking news.  My labs are the best they have been since at least May. That's 8 months. If you've been pregnant (5 times, thank you very much) or know someone who has been pregnant, you know that's a lifetime. Well, I gotta tell ya, I loved being pregnant. I'm fortunate. I actually felt great pregnant. The past 8 months felt nothing like that. 
"You feel a little better, right?"
I couldn't look at my husband. He's amazing. He has been next to me every step, every procedure, every Doctor Day. It's not his first time being the Caregiver. He and I both know how grueling it is being the Caregiver. We both stood by our spouses, weapons tirelessly drawn, ready to attack whatever cancer popped up with next. I used to tell my First Mike, "No worries! It's just like shooting ducks." I was wrong.  Fighting esophageal cancer is like betting against the House. New Mike's wife (yes, both my husbands are Mikes ... and both of us wives are Patricias ... that's a little God Nod) lost to breast cancer. We didn't know each other as my husband and his wife were dying. I'm not sure we could have seen past what was right in front of us. 
We both have been to Caregiver's Abyss and come out on the other side. And now, he's Caregiver again. My heart breaks for him. 
This time will be different. This time his wife won't die.
"Right?""Yes. I think I feel a little better? I think I have a bit more energy?"
Confetti and balloons fall from the ceiling along with my face.
I demanded ... "Dammit, stop being so happy. I still feel like crap. This fight isn't over." But what came out was ... "If my numbers are so good why do I still feel SO bad?" 
I'm not even sure my oncologist heard me. He says we'll know more in a week when the Big Results come in. Tells me I don't need to get labs drawn for 3 months.
Three months? How am I going to track my progress? How am I going to know I'm getting better? He agrees "just because it's you" to 6-week labs. Yay.
On the ride home, Caregiver gently smiles at me and asks if I'm OK. I start to cry. 
I'm trying to be happy, I am. I'm trying so hard. But my labs say one thing and my body says something else. 
We'll get there, he says, and takes my hand.

20 January 2014

10 things leukemia taught me - #3

I've compiled a list of 10 things I have learned since finding out I have leukemia.

Today, I'll share with you Number 3. 

3. Teenagers are still, well, teenagers

A friend of mine came over last week and gave me an amazing gift. She said she'd do whatever I needed her to do and could stay for three hours. Let's call her A.
My mind raced. This is awesome. But how do I choose a task for her to tackle? 
I'm the kind of person that likes a neat house. I like things put away. I like a clean floor. I like a clean bathroom. This is all comical because I have seven kids. And, believe me, when you walk through my front door, you can tell.
I decided to have A clean the bathroom that gets the most use. This was a tough decision. A door into my world would be opened to her that I keep slammed shut. I don't want anyone to know (or see) how that bathroom looks on a regular day. Yuck.
Bravely, with weapons of mass destruction in both hands, she tackled and conquered that bathroom. It looks amazing. Amazing.
When my kids came home from school, I made them all go stand in the bathroom and take a good look. There were audible gasps and wows. 
"THIS is what a clean bathroom looks like," I said.
They sheepishly thanked A.
It was at that instant I became embarrassed. It was at that instant I wanted to hide. Here I sit with all these kids. Yet, someone else had to come over to clean my bathroom.
I stupidly thought that once the kids knew about my cancer diagnosis, they would step up and help more around the house without being asked. 
I feel like my house is crumbling around me.
I want my kids to activate into helper mode, like my friends are. It's not happening. It's not going to happen.
I find myself getting frustrated telling them I need them to do this job or that job. I want them to see that the microwave is gunky, that the hall needs to be mopped, that the trash is spilling onto the floor, that empty boxes of oatmeal don't belong back in the pantry, that the ice tray needs to be refilled after ice is taken out, that the peanut butter goes back in the cabinet. ...
Having cancer means I don't do any cleaning. I discovered that having cancer means it's hard for me to teach them how to do it, too.
I think that's the part that's upsetting me? It's not that my house is "lived in." It's that we live in my house and I don't feel like a participant. I don't feel like I'm preparing them the way they need to be prepared.
They are just kids. God isn't done with them yet. 
And, cancer diagnosis or not, they are still teenagers. Their world revolves around them. Their wants. Their needs. Their dramas.
This isn't all bad. There is something innocent, something lovely, about being able to glide through your world seeing only what's in front of you. 

The body, amazing work of art by God, actually does this for us. It's a way of protecting us from getting hurt. And my children know hurt. 
My children know what it's like to have a parent diagnosed with cancer and die. I want this time to be different.
So, I pick, very carefully, my battles with my children. And, today,  I'll fling open the bathroom door and expose it all. 
For the rest of the 10 things leukemia taught me, here is Number 1Chemo Brain was Number 2.

14 January 2014

Chemo Brain

Not sure this post is actually going to make it today.  I've been trying to coherently formulate thoughts but they all seem to end in a jumbled mess of words. 
I feel like I've got cobwebs in my brain. The cancer community commonly refers to this situation as Chemo Brain.
Yes, Chemo Brain. 
Stop laughing. 
I've compiled a list of 10 things I have learned since finding out I have leukemia.
Today, I'll share with you number 2. You can read about number 1 here.

2. Chemo Brain is real.

I was out recently with some amazing people from my awesome church (Patti's awesome church). While waiting for our dessert and coffee, they asked how I was doing and how my treatment was going. I explained that I take my Super Dangerous but Absolutely Necessary chemotherapy pills twice a day. Not a big deal. I say it's not a big deal because I'm not sitting chained to an IV for four hours watching poison drip into my veins.
But I do have to wear gloves when I get the pills out. I also have to stop eating two hours before taking the pills and I can't eat until one hour after taking the pills. Oh, and the two doses need to be 12 hours apart. Still, not a big deal. But, the time was immediately important because I had ordered creme brulee and wanted to make sure I got to enjoy it before my deadline. 
I did. 
It was yummy.
Conversation shifted to what kind of side effects I had with my Super Dangerous but Absolutely Necessary chemotherapy pills. I told them that I'm tired. Really tired. Feel generally crappy. But, trying to lighten the mood,  I laughed and said "Chemo Brian stinks."
They had never heard of chemo brain. They thought I was making it up. 
I'm not. The wise ones at Cancer.org explain it like this: 
For years cancer survivors have worried about, joked about, and been frustrated by the mental cloudiness they sometimes notice before, during, and after cancer treatment. This mental fog is commonly called chemo brain. Patients have been aware of chemo brain for some time, but only recently have studies been done that could help to explain it. 
Though the brain usually recovers over time, the sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. They might last a short time, or they might go on for years. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so.

It's further explained as:
  • Forgetting things
  • Trouble concentrating
  • Trouble remembering
  • Trouble multi-tasking
  • Taking longer to finish things
  • Trouble remembering common words
My husband says it's getting more noticeable with me. Mainly, I seem to have trouble bringing up words. He says I say "you know what I mean?" while trying to explain something or talk about something. And, he says, he always nods yes. Even when he has no clue what I'm talking about. 
He's a good man.

11 January 2014

10 things leukemia taught me

I'm a list maker. So, naturally, I've compiled a list of 10 things I have learned since finding out I have leukemia.
Today, I'll share with you number 1.

1. The oxygen mask goes on me first.

Learning to put myself first is difficult. As a mother, I think my default setting is the complete opposite. I'd usually put my kids first. 
As a cancer patient, I have to put myself first. 
Learning this is tops on my list because it's causing me (and probably my husband) so much frustration. 
Having cancer has forced me to not only slow down, but to practically stop. My oncologist put it this way:
"Patti," he said, "you have four things to do each day.  I only want you to focus on these things. In order ... air, water, food, Tasigna (my Super Dangerous but Absolutely Necessary chemotherapy pills). That's it."

I don't like being told I have limitations. These feel like restrictions. "Air, water, food, Tasigna." Seriously? So, I challenged him.
"You can't be serious. That's it?"
He stared at me. The kind of stare your parents give you when they are getting irritated but are trying to be nice. I get nervous and decide to make a joke.
"How about laundry?" I said with a smile.
"Not a chance," he said.
Victory. No laundry. I'll take that. 
My days consist of my List of Four. And, frankly, not much else. Because I'm a good patient? No. Because I physically can't do much else. So, if I'm feeling able, instead of being on the go and doing for everyone else, I allow myself to only do only ONE thing a day. It's a learning process, for sure.
On an airplane, an oxygen mask will magically drop down right in front of you when it's needed.  While preparing for takeoff, the flight attendant goes into great detail about safely. And, most importantly, if the oxygen mask drops down, put it on yourself before you help others (your child, etc.). The theory being you will not be a help to anyone else if you aren't already wearing the mask. 
I've got to put myself first. I've got to think of the big picture. I've got to pace myself. If I want to go to church on Sunday (and I do!),  I can't do anything on Saturday. My body can't take it. 
But I don't have to do it alone.
The mask, required for survival, is right there in front of me. I don't have to pack it or carry it or be in charge of it or make sure it fits or even if it works. I don't even have to make sure the one that drops down for my kids is any of those things. 
It's already there. Ready. Waiting. Right when I need it.
I do, however, need to reach for it.
God is my oxygen mask. 
Look at Acts 17:27-28.
God did this so that they would seek him and perhaps reach out for him and find him, though he is not far from any one of us. For in him we live and move and have our being.
He's right there. Waiting. Right when I need him.

08 January 2014

Lab Day

It's easy to "forget" I have leukemia.
I feel crappy. All. The. Time. But I don't look particularly sick. Well, maybe I do. I don't really know.  But that's what I tell myself ... "Hey, I look normal. I don't look sick."
My hair hasn't fallen out. It has changed. It has gotten thinner.
But on Doctor Day or Lab Day leukemia smacks me in the face. Yup. There's no denying I have cancer. In my blood. Pumping and rushing throughout my entire body, to every cell. 
I'm usually the youngest one in the waiting room and today is no exception. There are a spattering of patients in wheelchairs with their caregivers. The caregivers look more war worn than the patients do.
I hate being here. I hate the way the other patients look at me. I imagine they are wondering just what kind of cancer I must have. They have a look of pity on their faces. They call me "Miss."  They are all old enough to be my parents.
I don't belong here.
"Moonis?" The nurse calls my name. Sigh. Back I trudge to the Stick Room.  
I am grateful that my blood can be tested and measures the progression of my disease. It's something real. Something I can track. White blood cells can be counted. I can see that the Super Dangerous but Absolutely Necessary chemotherapy pills are working. 
In October, on Diagnosis Day, my oncologist told me I would feel poorly for 3-6 months, but then ... THEN I may start to feel the best I've felt in years. I'm in month 3. The drugs are working and I'm trying so very hard to stay positive and keep a good attitude. It is crushing to see that my blood is responding to treatment and yet I still feel so badly. Most days, I'm able to separate how I feel physically from how I feel emotionally. Most days, I'm happy. Most days. 
I'm not going to die from leukemia today, next week, next month or even in the next few years. Statistically, I'll be living with leukemia for a long, long time.
And that's awesome.
It's awesome because I'll be living. It's awesome because I'll get to hear my children laugh. It's awesome because I'll get to feel my husband's gentle kisses. It's awesome because I'll get to see another day.
But today, leukemia smacked me in the face.