Sean’s Burgundy Thread: Myeloma Christmas Memories
Published: Dec 7, 2011 12:08 pm
“Daddy, do you remember that Christmas when you were bald?” my eight-year old daughter Lizzie recently asked me.
Until that point we had been talking about the eagles that occasionally glided in the skies above the lake next to our home in the Ozarks of southwestern Missouri.
“Uh… yes,” I chuckled, amused at her segue from bald eagles to the cue-ball that I had donned three years earlier during my chemotherapy treatments for myeloma. “Do you remember when I was bald?”
“Yeah, of course I do. There’s a goofy picture of you and me in the family room. You were bald.”
“Watch it now! What I mean to say is that you were barely five years old – do you remember much about that Christmas?”
“I remember that you were bald and that Katie and I went to Aunt Susan and Uncle Howard’s house for Christmas. You and Mommy went to Arkansas. Oh, and you were bald,” she giggled.
Diagnosed with multiple myeloma in November of 2008, I began my first induction chemotherapy on December 9th at the Myeloma Institute for Research and Therapy (MIRT) in Little Rock, Arkansas. And, yes, my graying locks wasted little time in making a hasty chemically-induced retreat from my head -– and everywhere else, don’t you know!
My wife, Karen, stayed with me in Arkansas during that initial induction phase, and our two daughters, Katie, then eleven years old, and Lizzie, five, were with my sister-in-law, Susan, who had come down from Chicago to Missouri to be with our daughters.
Karen and I felt strongly that it was important that the kids experience as little disruption in their lives as possible during the ensuing months of my cancer treatment. We wanted them to be in the familiar surrounds of our home, near their friends, in their school, and near their church family.
And as much as we missed them, we also knew that it wouldn’t be a good idea for me to be exposed to their little-kid germs in the close confines of our rented West Little Rock apartment.
Even in the midst of our own gripping fears, Karen and I tried not to show our trepidation at what was ahead for our family. We wanted to spare them from any needless worry — especially at Christmas time.
Katie and Lizzie both knew, of course, that Dad was pretty sick and that it was best that Mom be with him for awhile. Without us having shared all of the scary details, Katie’s clingy hugs, curious questions, and occasional teary eyes told us that she had an inkling about the seriousness of what was going on.
Though we hadn’t explained what myeloma would or could do in explicit terms, Katie finally shared that she was afraid that I was dying and wouldn’t come home again.
Yikes! My beautiful, smart, responsible, bubbly eleven-year old daughter was terrified that I was going to die. I’ll admit that Karen and I had those same thoughts, too, but it broke my heart to think that Katie was enveloped in her fear of losing me.
I have shared before that both of my kids were abandoned in China and that we adopted them when they were young. I promised Katie that there was no way on earth that I was going to abandon them now and that we needed to have the faith that God, and the doctors, would take care of us and that everything would work out.
I prayed daily that I could keep that promise. Some days I wasn’t so sure.
I don’t normally advise that a parent give their pre-teen a cellular phone, but that’s what we did. I wanted Katie to be able to call me day or night. We burned up the phone lines! She called me often, and I was glad to hear the phone ring.
And then when Katie discovered texting, well, she took that technological art form to a new level! One morning, a few months later, Katie texted me in Little Rock and asked me to guess how many messages she’d sent the previous month.
I offered ‘200.’
Nope, higher, she countered.
Surely she hadn’t sent more than 20 a day, so I guessed ‘600.’
C’mon, Daddy, try harder.
Long story short – Katie had sent 20,000 messages! If she hadn’t been a straight A student, played sports, was active in our church youth group, volunteered in the community, and was an all-around good kid, I might not have heeded Karen’s advice to ‘pick some other battle, some other time, we have bigger fish to fry.’ Indeed we did –- text away, Kate!
On the other hand, little Lizzie seemed to roll with the punches and had a Daddy-will-be-home-soon attitude. Though she didn’t get a phone – not that she didn’t pester me for one for weeks – Lizzie and I talked often about the goings-on in her world. Thank you, AT&T, for unlimited talk and texting!
Karen, an organizational planner extraordinaire, set out to orchestrate a master schedule of caregivers for me when she was at home and for the children when she was with me in Little Rock. It was important that Karen be home as often as possible with the kids, that she kept her music teaching position (and our insurance!), and that she plowed ahead with her Master’s Degree coursework to enable her to become a school principal.
Without even asking, many generous folks offered to pitch in. By the time I had completed my nearly 10 months of treatment in Arkansas, an impressive list of dear friends and relatives from as far away as New York, New Hampshire, Virginia, Illinois, and Missouri came down to stay with me. I still become emotional when thinking about how much love and support we’ve been shown during our myeloma journey.
“Did you have a nice Christmas with Aunt Susan and Grandma and everybody that year?”
“Yeah, it was fun, Daddy, but we missed Mommy and you. Everybody did. I think Grandma cried. I remember worrying that Santa wouldn’t know how to find you and Mom down there in Arkansas.”
During the Christmas break at school, Susan had taken the kids up to Chicago to be with their Grandma, cousins and other relatives for the holidays. Karen and I talked with them everyday and every night at bedtime. Though I’ve never been one to enjoy chit-chat or small-talk on the phone, I cherished every second that Katie and Lizzie went on about their days. A few months later we discovered the joys of using Skype, a video conferencing program.
I’ll admit that my chemo addled brain doesn’t remember many of those conversations, but I do remember how good they made me feel.
We celebrated my birthday on the 18th, but had no cake because I had massive mouth sores. On December 25th, Christmas Day, Karen and I went to the infusion clinic twice for treatment and to get shots in order to prepare for my stem cell harvest that would take place on the 29th, our 16th wedding anniversary.
On the 31st, Susan left Chicago with the kids and headed to St. Louis, where my brother Michael picked our daughters up. Michael drove them to Springfield, MO, where our friend Brenda and her son, Dan, began the five-hour trek of bringing the kids down to Little Rock.
At 10 p.m., Brenda, Dan, Katie, and Lizzie rolled in, and we joyfully celebrated the arrival of the New Year.
“Liz, do you remember celebrating New Year’s Eve in Little Rock?”
“Yes! I remember that we came into the apartment, and I was afraid that I wouldn’t recognize you because you didn’t have any hair!”
“Well, did you?”
“Yes! You were still my Daddy. But, boy, were you bald!”
And now, after a year in Arkansas for rounds of high-dose chemo, stem cell transplants, blood clots, surgeries for bone problems, and then two years in Missouri for weekly maintenance chemo, I’m feeling pretty good! And yes, my hair has grown back.
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