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Patient Corner: Sue Miller

"The pull of the sea is strong. The azure waters of the Caribbean Sea are not just a thing of beauty to the eye, they heal the soul. The mainsail hoisted, genoa unfurled, sheets pulled in and locked around the winches. The wind is perfect and fills the sails with a snap of power that pushes the sailboat free of constraints.  I feel the power as I grip the wheel and steer for open water. Gentle breezes caress my face. The warm sun drenches my thirsty skin.  A perfect beam reach allows the boat to cut smoothly through the clear blue water. The sound of wind in the sails and water rushing past the hull brings a smile from deep within me. I laugh with a joy that fills me up..."

There were similar feelings last week when it slowly soaked in that my chronic myeloid leukemia is in remission. I expected some sort of fanfare to accompany an announcement of such importance. Instead, the usual questions were asked of me by the nurse. And then she asked if I was ready to start another course of chemo. "No," I said.

Twice when the exam room door opened I saw Sheryl's friendly face in the hallway. She is the Research Nurse in charge of my chemo protocol. Sheryl was smiling. But she always smiles. No real clue there. Next up was a new Physician Assistant who didn't know me. She did her exam and commented on my good blood test results. She said my answers to her questions made her job easy. Then she touched on the bone marrow report. Not until the specific question was put to her did she respond cheerfully with, "Oh, yes, you are in remission." It was anti-climactic. The boys and I were quiet as we looked at one another trying to absorb such understated good news.

Doctor Cortes walked in flanked by Sheryl and the Physician Assistant. He was smiling big and shaking hands with me, Trey and Scott. At last the results were confirmed. It sank in slowly... perhaps I was in shock. After three rounds of chemo I was in remission.  From 47% bad cells in November to 1% now. (Normal is 0-5%.)

After Doctor Cortes left the room Sheryl and I did the happy dance and hugged one another. She had wanted to call me with the news. Her co-worker asked that morning why she was so happy. Her response was, "Sue Miller!!" Leaving the exam room I wanted to shout the news to everyone in the waiting room! Surely everyone would like to hear good news, to know there is hope and reward for our hard work, to feel encouraged? Some would no doubt be happy. But others might feel sad if they'd been in my place before and now weren't.

I didn't shout. Instead, I shared the news with every medical person I encountered the rest of the day. There were many smiles, high-fives, laughter and hugs. I saw the Physician Assistant who did my bone marrow aspiration and called to him.

"Rodney," I said, "you did a good job on my bone marrow Tuesday." He smiled at me curiously. "I'm in remission," I said. He pulled me close for a big hug and said, "I knew you had to be. Your labs were too good! Congratulations!"

After that texts began to fly back and forth with family and friends. Happiness abounded. I had just returned from nine days in Puerto Rico. Being home was a shot in the arm. Good therapy. Happy doses of good friends... awesome friends. I was flying high and savored every moment.    

"Sailing smoothly toward a beautiful island ringed by pristine sandy beaches, I'm in Heaven... Soaring... Happy... Feeling great!

...and then a rogue wave hits the side of my boat."

I began another course of chemo the same day I got the good news. Maintenance chemo. The same chemo given the same way every other time. DIY. I knew it was coming. What I didn't expect was to get knocked on my butt the very next day. After all, I've tolerated it with little to no side effects every other time. My grandson William suggested the chemo was attacking me since there were no bad cells to work on. Perhaps he's right.  

"You can't control the wind, but you can adjust your sails..."     

And so I did. I adjusted my sails once more. I let the wind guide me where I needed to go. I rested. I slept. I ate ice cream and dark chocolate. I watched three seasons of Downton Abbey in two and a half days. I pouted a couple of times. Maybe three. I didn't talk on the phone. I gave into not having energy. For awhile. I finished the six injections I believe are hardest on me and things began to improve. Two more of the easy ones to go and I'm done. I woke this morning feeling invigorated and, yes, energetic. I turned the music up loud and I danced.

Rogue waves hit quickly and then they're gone. You brace yourself and hang on. The seas settle and you realize you've not been hurt by the unexpected. You're tough and you shake it off. And you smile because you know you're strong. Life is good. All is right with the world again. Only now it's better. Truly.  

Tomorrow is another day, Scarlett... and it's going to be a good one!!

You can't control the wind, but you can adjust your sails...

Sue Miller

CML Survivor