What leukemia has taught me

I have leukemia. 

Chronic myelogenous leukemia.

Sometimes it helps to say it out loud. So I can hear it. Sometimes it helps to write it down. So I don't forget. So I'm not so hard on myself. And, in trying to make some sense of my new life as a leukemia survivor, I have discovered that I had (and still have) a lot to learn. Life as a cancer survivor, it turns out, has taught me a great deal.

I'm a list maker. So, naturally, I've compiled a list of 10 things - 10 big things - I have learned since my diagnosis.

The first three on my list were so big, so shocking to me, they deserved posts of their own. I've listed them and linked to them below.

1. The oxygen mask goes on me first.  You can read about it here.

2. Chemo Brain is real. Click here.

3. Teenagers are still, well, teenagers. Click here.

I feel as time moves on and I live with this disease items will probably move on and off the list. But today, at the 4 months since diagnosis mark, this is the rest of my Top 10.

4. To Do lists: I will NEVER get the laundry done. And I'm finally OK with that. My To Do list was usually lengthy and detailed. But I'm not able to cross things off my list anymore. I'm too weak, too tired, too queasy, too dizzy, too sick to get anything done. I've learned to create a different list. Now I have a Ta Da list.  It's a list of what I was able to get done. "Ta Da! Look what I did today!"

5. Listening: Within hours of finding out I had leukemia, a friend from my awesome church, let's call her L.B.,  gave me the emotional energy I needed to create team Patticakes for 2013 Light the Night (the main fundraising event for the Leukemia & Lymphoma Society). Every excuse I tossed at her she pushed away.

"It's only two weeks until the event. It's not enough time. I can't! No one even knows I have leukemia. I only found out a few hours ago."

She said, "It's perfect timing! You can do this!" 

She was right.

6. Support: More people care about my family and me than I ever realized. The physical support at Light the Night was breathtaking. The fundraising of more than $4500 over two weeks time was nothing short of a miracle. Team Patticakes was the second-highest fundraising team on the Peninsula in 2013. (Relay for Life is coming up ... Get ready!) We have also been blessed with such generous gifts of time, prayers, meals, baskets of snacks, house cleaning, money, cards and love. You have made a difference. 

7. Disease: On Oct. 7, what I knew about Ph+ chronic myelogenous leukemia you could hold in a teaspoon. Today I could explain it as simply or complexly as you want. Cancer research and the scientists who dedicate their lives to fighting this disease are literally saving lives. As little as 10 years ago, my go-to treatment would have been a bone marrow transplant and IV chemotherapy. Sitting in an IV therapy chair for hours at a time. I am fortunate that only four Super Dangerous but Absolutely Necessary chemotherapy pills a day are sufficient to bring my white count under control. I thank God for these scientists every day. They have made a difference

8. Pain: In the beginning, my bones and bone marrow were jam-packed to the brim with leukemia cells. So jam-packed that my spleen started trying to take on the burden of  "I have too many leukemia cells and no where for them to go" and became swollen and very painful. It hurt to eat. It hurt to breathe deeply. It hurt to move my arms and legs. It just plain hurt. Then, after being on chemotherapy for weeks, sometimes when leukemia cells rapidly die off it can cause a release of uric acid, causing intense pain in the legs and arms. So it still hurts. Having leukemia has taught me that I shouldn't suffer through the pain. I shouldn't "buck up" and take it. I should take it easy. Use the prescriptions. Use the heating pad. Sit in a hot tub. Get a massage. Do whatever works. 

9. Love: A good friend of mine once joked that the reason I had so many kids (7) was because I was so high maintenance, it took that many people to take care of me. Ha ha. Something I hear a lot is "Wow, you have your hands full with that big family." I do, I guess. But my heart is full, too. And having a full heart kind of trumps everything else.

What it means is that there is always, always someone here who loves me ... just because I'm me. The way my kids and my husband, the Caregiver, treat me hasn't changed. They love me no matter what. They don't look at me with pity or sadness or tiptoe around because Mommy has cancer. And I love that.

10. Faith: I am not in charge. Of course I didn't want to be diagnosed with cancer. But, it doesn't matter what I want because I'm not in charge. God is. My father died when I was 9. My husband died when the oldest of our four children was 9 leaving me a widow at 35. And, now, a cancer diagnosis. But my life is far from over and I expect there will be other trials I will have to face. 

And that's OK. God has been with me every step and will continue to be with me. Sometimes carrying me. Sometimes holding me up. Sometimes pushing me. But, hopefully, shining through me. 

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

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. 
HAHAHAHAHA
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 1, Chemo Brain was Number 2.

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.