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

Simple Guy: a guest post by the Caregiver

Lyrics from Lynyrd Skynyrd's "Simple Man."

Mike Moonis, the Caregiver, is one awesome husband. Today, I offer a view from where he sits. You can follow him on Twitter 

here or Facebook here.

I’m just a simple guy. 

I like meat and potatoes, even if it’s just a hot dog and French fries.  I don’t like to think too much. If too many thoughts get in my head at one time, I get mixed up and I have to cull out some ideas just to get a handle on things. I think a lot of guys fall into this category. NOT ALL.

Some intellectual types, some well versed fellows and the worldly traveler dudes appear to be able to sip on a glass of 20-year-old scotch and debate the ins and outs of the literary works of 18^th century authors like Jonathan Swift or Samuel Johnson (yeah, I had to Google them). 

Not me. I only want to know if anyone can beat Hank Aaron or Babe Ruth’s home run record (without having an asterisk next to their name). 

On the other hand, most of the women I have the pleasure of interacting with on a daily basis DO NOT fall into the “simple mind” category.

For example, my wife, (yes, Chemo Brain herself) finds it amusing to sit there while I’m trying to relax (getting a hockey score or two) and pelt my ears with heavy question after heavy question.

"Did you know what happened to Helen in school today?” 

“Tomorrow I have a doctor’s appointment at 12:30. Can you take me?”

“When you’re not busy, could you read this article I saw on Facebook about what you get when you pour molten aluminum into an ant hill?”

These are all solid questions, which I should hear and spend the appropriate amount of time contemplating (well maybe not the ant hill one, but it was interesting).

but not all at once.

Not in the amount of time it takes for my coat to leave my shoulders and hit the floor. Oh yeah, I went there. We simple guys need time to process our thoughts. Time to order our thoughts into some semblance of importance and, only then, take one individually and process each subject to its end. 

But, Chemo Brain is firing off questions faster than a Gatling gun. Cranking off thought after thought until my brain is riddled with meaningful questions. Now her thoughts are mixed up with my own questions. 

“Who is going to play 3rd base for the Yankees next year?”  

"Are Tim and Tickle going to get their MASH to the STILL in time?” 

“I wonder how long it’s gonna take for her to call me out for the coat on the floor thing?”

There seems to be no hope for me. Simple Guys need simple instructions to make it through the day. The Bible is a complex read, yet, once you break it down into smaller chunks, things become crystal clear. Narrowing down your focus to simple truths will bring all your questions to a simple and manageable result. 

“So give your servant a discerning heart to govern your people and to distinguish between right and wrong.”  1Kings 3:9A

“Blessed are the poor in spirit … Blessed are those who mourn … Blessed are the meek … Blessed are those who hunger … Blessed are the merciful … Blessed are the pure in heart  … Blessed are the peacemakers  … Blessed are those who are persecuted because of righteousness  … Blessed are you when people insult you  … Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you.”  Matthew 5:3-12

Simple, right?

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.

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.