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.

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."

Ugh.
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.

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.

Here we go ...

(from Light the Night team Patticakes' fundraising page)

Another cancer diagnosis. Well, let's just say this isn't our family's "first rodeo."

My first husband, Mike Minium, and I had 4 kids (Alice, Margaret, Mike-Mike and Kathryn). Mike Moonis and his wife, Patricia (Lea) Moonis, had 2 kids (Carter and Hannah). Cancer killed both of them. Mike Moonis and I met at a grief support group for children. We married and had Helen (7 kids - or as a friend of mine says "you have 100 kids!").

We got news this week that I have chronic myelogenous leukemia. We haven't even hammered out a treatment plan yet. If you want all the details from Dr. Google, here's a good site chronic myelogenous leukemia. 

Our children have been amazing. As we sat them down and tried our best to explain what we knew, and what we didn't, they showed love, compassion, strength, courage, faith, trust and wisdom beyond their years.

They came up with great questions, too. One of my favorites ... Will you get vibration (radiation)

One of the kids even said, "Look on the bright side ... You won't have to worry about the zombies because they only like healthy bodies!"

Please consider donating $7 - symbolizing our 7 kids - to fight leukemia?

Or, consider coming out Thursday night, Oct. 17, and walking with us?

Light the Night Virginia Peninsula

Our journey with leukemia has only just begun, but God has a head start. He's been working, moving, shaping events and people. It's breathtaking.