Kicked in the teeth: a guest post from the Caregiver

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

At the airport, headed to Mexico.

Sometimes caregivers get kicked in the teeth. 

As a caregiver, whether it’s some sort of cancer, Alzheimer’s, heart disease, or whatever, we try our best to make a difference in our love one’s life. Most of the time we succeed. We rub a sore muscle, we fetch a late night snack from the kitchen, or we lend a shoulder to cry on. We attend every doctor’s appointment and help remember that conversation we had just this morning. Successes, though minor in the big picture, successes none the least. 

This is not my first encounter as a caregiver to cancer. Fourteen years ago cancer picked a fight with me in the form of breast cancer with my wife, Lea. Like a rookie in the NFL, I was thrown into a world of learning the entire playbook the day after the draft. New terms, new teammates, new concepts, all focused on helping me help her. Together we studied the tendencies of our opponent, historical records that might shed some light on our own playbook that would form our attack on this disease. Surgery, chemo, radiation, we are winning. Then our opponent pulls out the trick play we never saw coming. Brain metastasis. A few months after that, BOOM, the game is lost. 

Recently, I sent my current wife, Patti, who has Chronic Myelogenous Leukemia (CML), on an all expense paid trip to Mexico that was gifted to her from a long-time friend. What a blessing for her to spend a whole week relaxing in a five star resort on the Mexican shore. We spoke many times and she FaceTimed us a few times. She looked and sounded GREAT. Long soaking bubble baths, resting on the balcony feeling the warm surf breezes, relaxing poolside with a bowl of ice-cream with sprinkles.  No complaints. 

Travel days were a little harder, but for the most part the trip was just what the doctor ordered. I was feeling pretty good that her quality of life was improving. The New Normal that we (she) have been dealing with since before her diagnosis seemed to be leveling out. I was very encouraged. On returning home, she was excited to tell the whole family about her experiences in Mexico and how much she missed us all. The second night home, I asked the question I always dread asking. … 

“How are you feeling, Honey?”

BOOM, reality hit me in the face!  It seemed the stresses of home had returned her to the New Normal we have become accustomed too. It was like getting kicked in the teeth. I could not help feeling like it was my fault that she was feeling as bad as she has felt over the last year and a half. It seemed to me and my pea-brain that while she was away, she felt better than she did when home. 

In no way do I blame her for this setback. She has the courage of David in the fight against this giant. I read more than a few comments on Facebook where patients are ready (or have already) to stop their medication, giving up on the playbook, because of their quality of life issues. I can’t begin to question their decision because I don’t really know their true story.  But I am grateful that Patti has the fortitude and the strength to continue fighting the fight. I have been blessed to be the caregiver of two strong women who love and trust God. And when I think of them and their fight, only one verse comes to mind.

I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus. Philippians 3:14

 Now that’s a hell of a playbook! 

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.

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.