02 February 2015

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! 

6 comments:

  1. You are truly an amazing person mike and I am privileged to call you a freind.

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  2. Truly blessed to know you both.

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  3. so thankful for you both, and your willingness to share your story as encouragement to others

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  4. Wow! This brought tears to my eyes. God Bless you for being such a good "caregiver", but more so a great husband and supporter. There is not a day that goes by that you two are not in my thoughts and prayers. FIGHT ON Patti and Mike and keep that Play Book open always! Love you both!

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  5. Mike, I don't know if this helps, but it may be assistive to consider the plight of a "non-cancered" individual's re-entry into the atmosphere after a vacation from responsibilities. Much in the same way that Mondays are difficult for most of the working population (and most school children), it's hard to come back to the accountability sometimes. Shoot, it's certainly hard to come back to the realities of illness and how it affects daily relationships and functions in a NORMAL setting after things are served on a platter at the touch of the room-service button for a while. Even when patients (and non-patients) love their caregivers and family with enormity, appreciate their jobs and their homes, the drudgery of looking at the piles of laundry, stacks of bills, and even time-hungry loved ones remind us that we are not living that "fantasy" or requirement-free paradise anymore. You are such a LOVED caregiver and partner. That's a blessing. Maybe the real lessons here are that patients battling illness still have the same struggles with responsibilities, and definitely the same (or greater) need for vacations. Hugs!

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