Thriving though the holidays*

*with cancer
*or any horrible, painful, awful, life-sucking disease

I get it. You are the one that "makes the holidays happen." You are the one that plans the menu, goes to the store, buys the gifts, decorates the house, attempts the crafts, plans the class parties, coordinates the Christmas picture, orders the Christmas cards, mails the cards ...
And now, as Thanksgiving is around the bend, you find yourself dealing with the following holiday joy-killer:

Fear.

I'm talking Grim Reaper Fear.  Fear-is-a-four-letter-word Fear.  Sleep-with-the-lights-on Fear.
This is my second holiday season since I was diagnosed with CML (chronic myelogenous leukemia). But by the grace of God my disease is being managed with medication. My doctors tell me my life expectancy is well past 5 years - as long as I don't become resistant to the Super Dangerous but Absolutely Necessary chemotherapy pills I take twice a day. And, as long as there are no gene mutations of this awesome cancer.
So, to me, resistance and mutations are always just around the corner.  Hovering around like in-laws or guests you know could show up at your door any second. Awesome.
What if this is my last Thanksgiving?
What if this is your last Thanksgiving?

It could be, you know. You could load up the van and head home from the grocery store and end up in a ditch. Every day, people die from things other than cancer.
Pretend, just for a minute, that this is your last holiday season. That next year, your family will look back and remember THIS year because it was your last.
What will you regret spending time on?
Who will you regret not spending time with?

Fear will try to freeze you and keep you from experiencing the Right Now. Fear will snuggle up like a lover and but then tell you nothing is worth doing and to simply give up.

My amazing pastor, Stu Hodges,  at Waters Edge Church said this:

"I just want to give you permission today to lower the expectation of you and raise the expectation of God and watch and see what might happen this holiday season."

Not a mention of Fear. Sounds more like Faith, to me.
None of us are guaranteed next Christmas.
You are too sick to do the shopping?
It's too painful to decorate the tree?
You don't have the energy to prepare the meal?
Those things don't matter. Spend your time with the people you love.
The Right Now is not about the presents. It's about being present.

Another one bites the dust

One of the great things about being a Grown Up is that there are moments, sometimes even entire spans of time, of great clarity.

This isn't one of them. 

Everything is confusing. 

Everything is a struggle.

Everything is an uphill battle. I'm walking in the proverbial snow. Barefoot.

I'm trying to do everything "right." 

Yet, I can't make sense of anything. 

Damn cancer. 

Little victories matter a great deal at this point. Anything I can measure that indicates progress is something to be celebrated. Savored.
So, today, I celebrate getting through another week of my Super Dangerous but Absolutely Necessary chemotherapy pills. Today, this giant falls face-first in the dust. 

Another week down, the rest of my life to go. 

Mommy grace

My high schoolers leave the house before I get out of bed.
I hate this. Really, I do. For 13 years I drove my kids to school. I loved having them trapped in the car with me for 20 minutes or so every morning.
Five minutes or so into the drive, I'd announce, "Topic of the Day!"
Groans and sighs from the back of the van.
It's the same every morning, yet they acted like they had no idea it was coming.
I'd pose questions, situations and we'd discuss. Sometimes serious, "If you were to die today, would you have any regrets?"  Sometimes silly, "If you were a food, what would you be?" Usually a Freedom of Speech debate. Oh, ask my kids to give you my "Election Day/it's a privilege and duty to vote" speech.
Good stuff.
A mommy friend of mine recently had her third child. They are officially outnumbered. Having seven kids, I'm WAY outnumbered. But I remember having three and feeling paralyzed. I began to get teary-eyed thinking of my 22, 20 and 17-year-olds as 5, 3 and a newborn. Then my tummy tightened up as I remember taking them all to get a gallon of milk one day.
I pulled some of ideas out of my Mommy Bank and suggested a few of my tricks-disguised-as-games.
Now, it's 17 years, four kids, death of my First Mike and my cancer diagnosis later.
Now, I'm yelling at Little H when she pulls the laces from her shoes and is practicing how to lace them.
Now, I'm snapping at The Son because the trash didn't go out.
Now, I'm scowling at K because I got a form this morning and it was due yesterday.
Now, I am not having fun with my kids.

Where did that other mommy go?

The bus is coming to get Little H in 10 minutes and she is brushing her teeth  s l o w l y  . Then she starts to have a freak out.
There's a TAG in the side of her shirt. "Get it out. Get it OUT. GETITOUUUUUT."
Never mind she's worn said shirt probably eight times and not even noticed this mean 'ol tag.
I sigh. Grab scissors. And, not very gingerly, send the mean 'ol tag to the trash. I exploded.
"We have to go!"
Then, my Little H comes over and gives me a huge hug. Lays her head on my chest, pats my back and says, "It's OK, Mommy."
Oh, Little H. I knelt down and looked into her big brown eyes and told her, "I am so sorry I snapped at you. There is no excuse. I will try to do better."
She smiled up at me. She's full of grace.
I need to give myself grace.
I gave advice to another mommy friend with young kids last week. Apparently, I'm better at giving it than living it.
This friend, the supremely talented and witty young adult fiction writer, looked me smack in the eyes and said, "Give yourself grace."
She tells me to love myself. Right where I am.
The Bible, in 2 Corinthians 12:9, says,

But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.

Rest in God so Christ's power can rest on me. God's grace is enough.  For Little H. For me. For you.

Lean on me

I was diagnosed with CML right before Light the Night.

At my 6-month mark, it was time for Relay for Life.

How fitting.

Having CML (chronic myelogenous leukemia) means I get tired easily and often. That makes participating in events and survivor walks difficult, at best. But, at both events, I was held up by amazing, giving, selfless friends and my dear family.
So, for your viewing pleasure, here are pictures from the Patticakes team at the Newport News Relay for Life.

Me, The Caregiver and 3 of our daughters walking the survivor lap.

The family (plus 1 boyfriend and missing 2 daughters still at college), some Relay SWAG and
my dear friend over at runningwithletters.blogspot.com, Cynthia.

Let me tell you about Charlotte and Suzy.
These 2 beautiful young ladies had a "bookmarks and baked goods" sale to raise money for the
Patticakes team. These amazing 5th graders raised more than $200.
That's their awesome mom and dad, Julie and Doug, in the bottom picture.

Amber and her husband Joe are 2 of the most giving, genuine people I've ever known.
Amber is also an amazing elementary school art teacher. The picture on the left is the luminary bag
she created especially for me. Notice the AU in the top corner, and the words "giant slayer" in the ribbon.
Love it! Love them!

The top, left picture is of Sarah and Jason and 2 of their cute kids.
They have stood with me since I was diagnosed.
On the right is the wonderful Ashley and Robert and below is their beautiful princess. She loves me.

I've leaned hard on these 3. Robin, top left, and Nate, top right, since my first Mike died.
Below is beautiful Pat.

Debi is a long-time cancer survivor and friend. The top picture is the back of her survivor shirt.
Bottom pictures are of her and me, walking the survivor lap and in front of the survivor ribbon.

Some shots of my beautiful family. They mean the world to me.

And finally, some luminaries.

I get it now

I finally understand.
The Caregiver and I helped start a camp for grieving children, Mikey's Camp (named after a dog, not one of my Mikes). We believe it so crucial for kids who have experienced the death of a loved one. Every camp, we hear, "this is the first time I've been around other kids who actually get it." It's usually the first time kids meet other kids who have lived through the death of a parent or sibling.
A whole new world has opened up for them. A world where they don't hear,

"Yeah, I know how you feel, my dog died and I've been really sad."

Instead, they hear,

"My dad was sick and dying for weeks."

"My mom won't stop crying. Or get out of bed. Or stop wearing pajamas."

"I hate sleeping in the room with my dead brother's things."

Well, I get it now.
Novartis, the drug company that researches and makes my Super Dangerous but Absolutely Necessary chemotherapy pills, flew a group of CML (chronic myelogenous leukemia) survivors and their own caregivers to a two-day summit in New Jersey last weekend. I will update the details of the summit in a later post. But, it was a great experience.
The weekend began with a yummy lunch at a fancy hotel. The Caregiver and I were the first ones of the CMLers to arrive. Then, others started coming in and it began.

"Hey, I'm Patti."

Some of the CMLers and caregivers. New Jersey, March 2014.

"Hey, I'm F. This is R. You a 'blood sister'?"

I smiled.
And the room filled up. It filled up and I look around and realized they all have cancer, pumping through their veins. Just. Like. Me.
After introductions and we figured out who were the CMLers and who were the caregivers, the conversation quickly switched to finding out which drug everyone is taking and the side effects they are dealing with.
Wow. This was awesome.
Don't get me wrong. It's not awesome that all these other people - some as young as 30, some who still want to get pregnant and start a family, some who are years into their diagnosis - all have cancer. No. That's not awesome at all. That sucks.
What was awesome was that they all get it. They understood how I felt. They've been there. And there was a whole room full of people. Just. Like. Me.
That was awesome.
So, yes, I get it now. When the kids head to Mikey's Camp and meet other grief survivors and are so excited to meet the kids who are just like them, I thought I understood. My father died when I was 9. There were no grief camps in the 1970s. All my friends still had both their parents. But I know what it's like to be 9 and have your daddy die. Then when my First Mike died, I thought that I could, that I did, understand how our kids were feeling. And maybe, hopefully, I did OK. But that's not the same.
It's not the same as walking into a room and seeing it fill up with people who truly get it. People with hopes, dreams, kids, caregivers, pains, struggles. Just. Like. Me. That is amazing.

Fear and loathing from the back side of 40

Birthday flowers.

Today is my birthday. 

I say that not because I want songs, or presents or recognition (although I did get all these things today) but because there was a time I wasn't sure I'd actually be here for today.

I have been trying to discover my New Normal while living with a cancer diagnosis since October. 

I remember the doctor's declaration distinctly. 

"You have leukemia."

Wait, what? 

"Leukemia." 

That's cancer, right, of the blood? You can't be serious. Cancer killed my first husband and now you're telling me I have it, too? How am I ever going to tell my kids?

What went through my mind?
Fear. Fear of the unknown future. Fear that there won't BE a future.

My brain immediately starts spinning and spouting off worst-case scenarios.

I'm going to die (not anytime soon).

My hair will fall out (eh, it changed, got thinner).

I'll need a bone marrow transplant (nope, only if the Super Dangerous but Absolutely Necessary chemotherapy pills stop working).

They'll admit me to the hospital (nope).

I'm going to die (not anytime soon).

Thanksgiving came. I watched from the couch, huddled in blankets, suffering from the effects of the Super Dangerous but Absolutely Necessary chemotherapy pills as my children prepared all our traditional dishes. My mind slipping into thoughts of "What if this is my last Thanksgiving?"

Which quickly became "What if this is my last Christmas?"

And then "What if this is the last ..."

Looking back now I realize it was fear driving the bus. And here's what I figured out: If I let fear drive me around I will end up frozen. So frozen, in fact, that I'll be unable to experience what's happening right in front of me. I'll miss it. All of it. 

The thing is, if I focus on the "what if ..." I realized I will miss out on the Right Now.

So, with a little help from Isiah 41:10, I told fear to get on the bus and go. 

"Do not fear, for I am with you; do not be dismayed, for I am your God. 

I will strengthen you and help you; I will uphold you with my righteous right hand."

My New Normal is going to take some getting used to. But I do know that I want to be a participant in this New Normal and not a spectator. Today I got to experience my first birthday since my diagnosis and it's been my best birthday yet.  It's been complete with flowers, friends, singing phone calls, a massage, baked goodies, chocolates, laughter, and the love of my amazing family. It won't be my last. 

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

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.

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.