Today was to be my final big dose of weekly chemotherapy, an infusion of three drugs, Panitumumab, Paclitaxel and Carboplatin, followed by 2 additional weekly infusions of more limited and more physically manageable cocktails. A week from now I would have been 2 “easier” steps closer to the finish line of the clinical trial. I’d been anticipating this milestone for weeks. I repeatedly told myself I could make it through the debilitating fatigue, annoying digestive issues, burning stomach pain, reflux, cracked fingers, scaly, itchy, dry skin, splitting lips, facial and upper body rashes, bone and muscle pain, nose bleeds, and intermittent nausea for just three more weeks...But, the finish line has moved again.
If cancer treatment teaches me anything, it’s that predictability and certainty are about as guaranteed as a Vegas slot machine. Depositing any hard-earned hope and faith in an expected outcome is always a gamble. Chemo side-effects, like the house, are always favored to win.
Low platelets, low magnesium, and anemia are just some of the side-effects that caused today’s chemotherapy cancellation. I had commented to my sister, Jenny, a few days prior that I didn’t know how my body could endure any more of the necessary but cytotoxic drugs that are killing not only the cancer, but all my rapidly dividing cells. I had begun to feel absolutely toxic. And, the fatigue that has gripped me is like none I have ever experienced. Some days it comes in steady waves. Other days it is all-pervasive. Lately, I struggle to keep my eyes open. Fortunately, I can nap, so I do. The exhaustion, however, is unresolved by sleep.
I was scheduled to first meet with my oncologist, Dr. Valero, today. “How are you?” he asked as he entered the room and began to wash his hands. “Well…really tired,” I started. “You’re getting pretty beat up,” he added at the same time. Yes, that’s exactly how I feel and look…Beat up. “We’re going to give you the week off,” Dr. Valero said. I was definitely more relieved than disappointed, but couldn’t help somewhat regret another delay. I have been so wholly invested in the “just 2 more easier weeks after today,” payoff, I had to take a moment to collect myself; I cry very easily when my resources are this low. Tonight I remind myself, “That’s what happens when you play the slots. Stop counting on your (lab) numbers always lining up.” A week off will allow my body to strengthen and recover from the assault. Dr. Valero assured me that many patients in this clinical trial demonstrate the same pattern – i.e., the need for a week off following 3 consecutive weeks of treatment.
So, my last big dose of the clinical trial phase is rescheduled for next Thursday, September 28th…given my lab numbers are in range. Standard of care chemo, barring any additional delays, will begin in 5 weeks and be completed sometime in early 2018. Neal will finally be here next week, and have his first opportunity to attend chemo with me. I look forward to showing him the world-renowned MD Anderson Hospital and medical center. It is such an impressive facility, and I feel so proud and honored to have the privilege to be treated there.
Meanwhile, I’m not sure what I’ll do with myself during my week off. I really don’t have the energy to do much, and must still be conscientious about infection, and now bleeding risks. I fantasize about spending time on the water, taking leisurely walks along the Shoreacres bayfront where I grew up. Or, maybe even a short trip to Galveston…But, with temperatures still up in the mid 80’s, I can’t spend too much time outdoors as sun exposure and sweating exacerbate the Panitumumab rash.
It can be challenging for me to spend time in the homes of others, even family. I feel as if I have an obligation to at least try to be present and interactive. No one has ever made me feel that way, I do it to myself. And, I have a strange relationship with food right now. I have little to no appetite. If asked what I want to eat, I have NO idea, and it can overwhelm me to have to decide. When I explained this to my sweet brother, Carl, he replied, “I know what to do. I’ve got it covered.” He brought several mild dishes from his favorite Indian food restaurant, which I ate for 2 days!
When a meal is laid out in front of me, I’ll readily consume it. Last night, for example, sister, Sally Jo, and I were invited over to Steve and Marisa Effenson’s home for Rosh Hashanah dinner. Catered from Ziggy and Kenny’s New York Delicatessen, the food was delicious…I almost declined the invitation at the last minute due to my fatigue, but resolved to go despite how badly I felt. I knew everyone would understand if I needed to leave. I was so happy I rallied. Spending that time with family and friends was nourishing to body and soul.
I’ve been receiving acupuncture to address the dyspepsia, fatigue and sleep, and it’s been helpful. I appreciate the non-pharmaceutical intervention, as I am averse to adding any additional drugs, and their potential side-effects, to my body.
Finally, I want to share an experience I had riding the bus last week. Scheduled for early morning chemotherapy I was abandoned by my Uber driver while waiting in front of the apartment. I quickly walked to the next street over to catch the 6:30 am bus to MD Anderson. As I boarded, a little out of breath and aware of my “cancer patient” appearance, I took the first seat next to two elementary-aged children on their way to school. Their young mother sat directly across from them. As the bus bounced along Greenbriar for several blocks I peered out the side windows, mildly annoyed that Uber had charged me $5.00 for the cancellation (which I corrected), my dyspeptic stomach causing discomfort, which likely showed on my face. As we approached a stop, I turned my head forward. The mother across the aisle made certain to make eye contact with me, smiled, and asked with genuine interest, “How are you doing?” I nodded and said, “I’m hanging in there,” as we began moving again. Holding my gaze she said loudly and sincerely over the din of the rumbling bus, “You look BEAUTIFUL!” I teared up, put my hand on my heart and and mouthed “Thank you, thank you.” As the bus roared down the street I looked out the side window again to shield the children from my crying face. I wish I’d had the wherewithal to hug her before they exited the bus… “Take care,” she said as she ushered her children out the door.
That young woman getting her kids to school on public transportation before the sun had even risen made it a point to reach out to me. I did not look “beautiful” that morning in the superficial sense of the word…but, she surely made me believe it for a moment.
Her simple act of human kindness affirmed what I know in my heart, but too often forget…
There really are more good than bad people in this world.