14 February 2014

No one is forgotten

"Nobody has ever measured, not even poets, how much the heart can hold."
― Written by Zelda Fitzgerald in her novel, Save Me The Waltz.
I remember, specifically, Valentine's Day 1989. I was working on the city desk at the Ledger-Enquirer newspaper in Columbus, Ga. This day in particular is big because it's the first one I experienced as a member of the Real World. You know, on my own, college graduate, buying groceries, full-time job, etc. I was working the night before the Big Day and I remember mentioning how "sad" I was because I wasn't going to get any valentines. 
I came to work and on my desk was a little envelope. 
"Miss Patti," it said. "My dad (who was the city editor) said you weren't getting any valentines so I made this one for you."
Best valentine I ever got. And the only one I got that year. It hung on my desk for years. No, I don't know where he is today. I guess he's 29-30 now? Married, getting little valentines of his own. He probably doesn't even remember making it for me. I guess it's so precious to me because it was done out of pure love. The kind of love that little kids show with wild and reckless abandon, not caring who sees. He saved me that day. His little 6-year-old gesture made me feel I was not forgotten. 
After my First Mike died, I announced, to no one in particular, that I was never going to get married again. Yep. Never even going to kiss another man. Ever. How could I? How could I even pretend to think that I could love again. After all, I was still in love with First Mike. It didn't matter that he was dead. 
God has a funny way of changing up my plans. If you're smiling, He's changed yours around at some point, too. 
I did marry again. Current Mike (the Caregiver) and I met at a children's grief support group. His wife had died. They had two little girls. First Mike and I had four kids. When First Mike proposed marriage to me, he asked my father for permission. When Current Mike proposed marriage to me, he asked my children for permission. 
I remember people being angry at me for getting married again. They said they didn't understand how I could "do that." They said they didn't understand how I could replace First Mike. They said it seemed I had forgotten him.
Wait, what?
I didn't replace him. He's not forgotten. I still, even today, love him. 
Most people don't understand this. How could I be in love with First Mike and also in love with Current Mike?
I explain it this way. When our first child was born, we were brimming with love and awe. "She's amazing. Spectacular. Never before has there been a baby so incredible." We wanted to have a second child. But, frankly, we were afraid. "How in the world will we ever love another baby as much as we love the one we already have?"
Then God does this amazing thing. Just when you think your heart is full, he pulls it and stretches it and grows it. And you discover, yes, you do have room in your heart for more babies after all.
That's what it feels like to be married again. The space in my heart that belongs to First Mike still belongs to him. God expanded my heart and I discovered I loved Current Mike, too. When I thought my heart was full, God pulled it and stretched it and made more room. Blew me away.
No one is forgotten. Not today. 

11 February 2014

What leukemia has taught me

I have 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

01 February 2014

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 18th 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?