September 30, 2009

Beyond my control: Mom with wheels watches daughter in cancer conflict

Today was a day of regrets, silent screams and tears. It was a day to give thanks that I use an electronic calendar, gas is cheaper then a year ago and someone invented heated car seats and blankets, medicines for allergies and multiple sclerosis, and cell phones with mapping and txting.

Medical staff confuse me with the push for a medical treatment and the back pedaling when circumstances steer us to another set of drugs or stopping treatment.. It's a full-court press when you are wanted in a drug trial, followed by assurances that being in the control group is OK too when required randomness places you in the non-treatment set..

Today, I learned that some medical test numbers are like statistics - you can make them say what you want. Last month, a score of 54 halted my daughter's chemo treatments. This morning, a 53 is good enough to resume chemo..Today becomes a day to do the chemo and add another drug to the arsenal, so we rearrange calendars, booking more tests and doctor visits in December, in March, in May in Michigan and others in Tennessee.

The same flakiness of the numbers is echoed in what my daughter wants me to do - listen or advise; drive or ride,sit in the lobby or wait with her in the doctor's office, fetch warmth or chase the bad guys, grab a bagel or make it a muffin. Choices on a day when I would prefer no decisions, no movement, no breathing, even. Yet, even in pain of heart and body, I want every minute possible with her as if it will make up for the time spent working when I could have been playing dolls or building castles.

I'd already started wondering at what point do all the drugs and the tests to monitor the drugs cause more harm then the cancer in a woman's body. The waiting room Time magazine on the progress of cancer treatment deos little to fix my fears.

The odometer keeps rolling, rolling, rolling - more then 230 miles today - as we add a new, but available, infusion center into today's lineup to fit in a chemo treatment and flu shot before she heads back to her job 600 miles away. We arrange routes on the fly as we bounce into detours, laughing when the multiple sclerosis mush makes it impossible for me to remember, much less distinguish directions. As the hours slip away, I rearrange my plans and send a silent prayer of thanks for the heated seats, portable ice packs and steroids.

Even the rest break - sandwiches and warm soups on this unexpected cool day - turns stressful when I see the overwhelming fatigue in my daughter's face and realize she's about to spend the next eight hours alone in airports and on roads on her way home. She gets mad when my eyes glisten with tears.

On the way to her first airport of the day, I'm shocked by spots and flushing on her face, too tired to mask my face so I scare her. By the time we reach the airport, her face is improving but the post-chemo fatigue kicks in. Still, it makes no sense for me to do more then drop her off - I can barely walk today and wouldn't be allowed past the security check. She plans to find the gate and rest. I promise to call, or at least txt her, to make sure she boards this plane and the next.

I hit the highways - more detours again. I pull off for txt breaks, but finally home.

Today, I regret deciding medical school was impossible. At times, I regret being a mother. All day, I regret being a mother whose daughter has/had breast cancer. Each regret pushes the refrain from Tom Rush's "No Regrets" through my brain. .
"No regrets. No tears goodbye
Don't want you back, we'd only cry, again
Say goodbye, again."
Over and over, I have to say goodbye to our daughter, let her grow up, let her be when I want to protect, make her whole, make her well. Through the evening and through the night, I txt until finally the one that says "I'm home" dashes across my screen. The 22-hour day ends.


  1. Hi MCW,

    What a story, hope you both have recovered from the ordeal.
    Sending you good thoughts and a big hug.

  2. MCW -- sending cyber hugs and best wishes to both you and the kid. Hang in there.

  3. It is so hard to feel helpless and almost impossible to find any words to offer as solace. But your family is in my heart and my prayers and I truly believe in that power.