The Results are In

3/25/18

The results are in : The clinical trial is over and it was successful for 4.7% of patients. I am one of the 4.7% and though the trial is over, my treatment is not. They don’t know why it worked for me and not others. With my celebration, others are mourning. I am thankful for the success of this drug, and the opportunity through the drug company’s “Compassionate Use” program to receive the drug for free, but the low success rate keeps me humble. In my most recent oncologist appointment, the Nurse Practitioner reminded me we will continue treating this Metastatic Triple Negative Breast Cancer because it is aggressive and it “always comes back”. Her comment sucked the air from my lungs and I wanted to hold on to Katie’s arm as she sat beside me, to just keep me grounded.

I was told there is a DBT concept called “Turning One’s Mind”. This is when I make a choice to move my attention from something screaming at me (“CANCER!!”) because it is necessary for coping in that moment. I think I do this all the time, but I don’t know how, exactly. Eric calls it “putting it in the cancer box”. Sometimes we have to hold up the fears and anxiety about cancer and place them gently in a figurative box, close it up and pus it to the side because living requires more than we can handle when we’re also holding the items in the “cancer box”.  Two Thursdays ago, I had that “cancer always comes back” conversation with my oncologist. I Turned My Mind to the tasks required that day. My oncologist discussed possibilities of future treatment. She is brilliant and knows as much a out TNBC as any researcher in the world, I think, and she definitely knows my case better than anyone. I trust her ideas and intuition. There is no clear path forward now. We do the next thing which seems right at the time. I’ve been in a predictable pattern for 2 years now and even this first non-trial appointment threw me-maybe because it was less predictable.

Someone visited me during my infusion to tell me that although the drug is free, all the const associated with administering it may not be. Awesome. I can usually be friendly to almost anyone, and after her not being able to answer ANY questions I had, I realized she was just the bearer of bad news. But as I signed my life and bank account away, I said, “cancer is fun. And cheap.”  I handed the papers back to her. The guy across the room, keeping his extremely sick mother company as she received more poison in her veins-he chuckled. The woman from the financial office didn’t.

So, Katie and I eventually drove back to Oakland, as we have done together so many times, her friendship steady through the years. I picked up the kids, took them to classes and appointments, did the homework/dinner/evening dance, but I went to bed early, because I HAVE CANCER AND ALL THIS TAKES A TOLL. Physically and emotionally. I was tired. I slowly “turned my mind” to the Cancer Box and opened it. Holding all the fears and anxiety and desires and regrets and uncertainty, I cried. I cried because finances are so STUPID but such a heavy and ever-present part of our story and daily life. I cried because I sometimes can dream of a future with me in it but I was given a shot of reality that day. How do I live with the uncertainty? And what if I die? The thing about dying is that one can never consult with someone who has done it before. I’m in a season of reading a lot of memoirs of people as they were dying or walked their spouses through dying. Eric will ask me what I’m reading and I have to laugh. He knows-so depressing, right? But somehow it is comforting. Praise God I am still alive but what about my friends, and yours, who are no longer living? If cancer takes over my body again, will I still say Praise God? I’m not ready to have to come to terms with the verse, “he gives and he takes away-Blessed be the name of the Lord.” My kids and my husband aren’t either. I want to be making plans with my kids for college, dream about our next phase of life-to wonder and dream about adventures we hope to have. (mainly going to Ethiopia with Eli-my only true “bucket list” item) Dream of someday owning our own home, holding grandchildren, holding Eric’s hand as we hike together every Friday forever, watching our hands grow older. I cried because I am afraid cancer will still take all of that away.

Can I Praise God in my living? In each ride to school-dropping my kids off and making plans for the day? Staying up with my teenagers as they share their hearts at a time of day when I’m so tired? In the connection I have with Eric the 30 seconds before I fall asleep in our make-shift bedroom with crappy lighting and no closet? How can I be content with my daily life? Sharing a cup of coffee with a friend, hearing about her relationships triumphs and struggles, calling my Dad to hear his voice of encouragement and love. I’ve recently gotten my California Teaching Credential and will start a new job Monday at our school as a “K-1 Small Group Specialist”. This will be Monday-Thursdays (except for my UCSF thursdays) and I’m looking forward to the consistency of the job, the increase in income and the work I’ll be doing. I love our little school, it’s teachers and especially all the little ones. What a blessing to be able to “go to school” each day with Eli as he finishes Elementary School and what a privilege to sit with these babies, encouraging and teaching them-watching them grow before my eyes. May I praise God in this living every hour and every minute each day. May I never take for granted these moments I’m given.

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Waiting

I grew up in the South. We had a huge Forsythia shrub which bordered our neighbor’s yard, planted by my mom, who brought clippings from her grandmother’s yard, in Mississippi. That shrub was rooted in my mother’s heart, a piece of home for her. She would bring in clippings to force bloom when winter felt a little too long. It was a ritual that brought warmth and hope into the house. Soon, the azaleas would bloom and then, Spring!

I walked past them at first. I was in a hurry to buy “easy food” so the next morning wouldn’t be so crazy while the kids made their lunches. But I circled back toward the front of Trader Joes, where the brown branches were displayed. I imagined my mom clipping limbs for FREE and here I was, paying good money for bundles of dead branches. And now they sit beautifully dead on my piano in a vase that probably came from my mom’s house. Waiting. I see the beginning of tiny pink blooms. I don’t even know what kind of bloom it will be or if I scored the branches correctly…but it seems appropriate to stumble out of my bedroom in the morning to see the branches, waiting, in the dark.

During this Lent I don’t even know how to wait. I’m impatient and busy. I’ve had a cough for a week that is freaking me out. A little cough that won’t go away could be nothing. Allergies. Or-it could be tumors growing. Thankfully I have a scan today (I won’t know results until the weekend, FYI) so I won’t have to wait much longer.

Hoping in the waiting. Waking up this morning, coughing and thinking, “I’m still coughing.”

“This house is a mess.”

“I should do the laundry”

“I really should exercise”

“I’m still coughing”

“I should drink some tea and get a blog going.”

Today I’m praying as I’m writing: Help me wait well. Help me truly live this day. Help me to see my children, to hear what they are really saying. Forgive me for my biting words and ugly thoughts. For rushing past the dead branches. For not noticing tiny blooms. Wait with me, Jesus.

If you’re reading this, you’re aware I’m now writing in this new space. My Caringbridge site will be active still, but strictly to keep track of my medical issues. I hope to write more often here, about ways I’m learning and struggling with truly living my life each day. I’m sure I’ll include thoughts on being a mother, wife, cancer fighter, teacher, daughter, friend…..

I look forward to many mornings in my sunny hippy Berkeley cafe, writing while living life, waiting for Spring.