12 February 2015


Every once in a while, as a mother, you get a glimmer, an affirmation, that all you have done has been worth it. Today, my oldest daughter, the 23-year-old, gave me this amazing gift. This guest post is from my beautiful daughter, Alice. You can follow her on Facebook here.
Me and Alice, Thanksgiving 2014, Corolla, NC

If anyone has had a family member endure cancer before, they know it will not only wring you dry emotionally, it will wring you dry financially. The magnitude of this problem can be seen in the fact that a popular American TV show is based off a guy starting a meth empire because he needs an impossible amount of money to tackle his medical bills when he is diagnosed with cancer. 

My mom has not started a meth empire, but she has some loving friends whose lives she has touched, who had the idea to give back by starting this fundraiser. The costs of treating cancer alone demonstrate its powers to cripple not just your joy, your energy, your family, your love, your years yet untapped, but also, cruelly and insatiably, your pocketbook. 

Couple that with the cost of supporting children- not just children, but SEVEN children with unique health problems, hopes, and dreams of their own, and I literally could not tell you how my parents cope with the stress of it. 
I know Mike works harder than I have ever seen anyone work at anything so he can provide for his family, sacrificing every aspect of his life and every minute of his (rare) spare time to make sure our lives are okay. 

I know my mom continues to be my mother, in spite of all the forces of the world that would take her and make her otherwise, she continues to be actively involved in my life and the lives of all her children- she continues to care when I get good grades or a new job or when I come to her with my fears and my dreams. I know that even when cancer has sapped her energy, from somewhere deeper than life itself, from somewhere stronger than our human bodies themselves, she finds it, and it flows from that Source of the Eternal Love of the Mother endlessly and profusely, with a fire of love and a warmth of light that cancer has not and will not ever find in its power to take away. 

It seems the Universe has heard our cry, and despite the garden of abundance among which we found ourselves when we thought we were condemned to a deserted foreign land, the Universe has seen fit to smile on that abundance, to open those flowers of love, to shed loving tears of nourishing rain. We have been given provision beyond all reckoning, and kissed with infinite genuine love by the souls of kind spirits all around, and yet the Universe said, "No, I have more to give you." And we looked around, just when we thought we possessed all the abundance of the world, and saw that there was more.

My mother, though her levels are looking better, does not feel this 'better' of which they speak. Her doctor says, well, that's your quality of life with leukemia. But such a quality of life is no life at all if he is to cast such a final judgment. We have hope that she does not have to suffer every single day for the rest of her life. We demand that that cannot and will not be true. Her networks developed through her online activism in the CML community have told her legends of a specialist in New York, a wizard of sorts, who is the best of his kind, who can work wonders- who can maybe, possibly, offer her a promise of something better. 

This fundraiser, created by a friend, was just an idea that my mom initially dismissed as "tacky, rude" to "ask for money". We were expecting maybe a hundred dollars, at best, and that hundred dollars would have been a blessing and would have helped. 

But we were not given a hundred dollars. We were given TWO THOUSAND dollars. TWO THOUSAND DOLLARS, not by organizations, but by real human beings, from their personal finances, from their savings accounts, from their weekend date money, from their grocery budgets, from their own paychecks- given, just freely given, with a force of love blowing with such magnitude that the iron clutch of cancer is forced to relinquish just a little, and breathe the cool breath of loving relief, just for a moment. 

Because of those people, those angels, my mom is going to get to see that specialist. She might get her life back, or parts of it that resemble a mosaic more of her choosing. 

We might get to keep her a little longer- she, my Mother, my only Mother, the only one I will ever have, through whom the Universe flows nourishment like an umbilicus of love and nurturing flowering my spirit in a way that no one else can, she connects me to my Source, she shines her light on my life and I grow into something wonderful, she makes my life okay but being here, just being here, and to think that she might get to be here a little bit longer- thank you. 

My soul weeps with joy, my spirit leaps, and my heart shines with the promise of what yet may come- Hope, which is our lifeblood, which propels with vision into a meaningful future, which colors and enriches our lives- you have given hope to me. 

Thank you. 
Thank you so much.
Click here to see the Give Forward fundraiser.

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!