The great illusion
Friday, December 13, I woke up to the taste of ammonia and stomach acid in my mouth. Over the past months, fatigue had settled in, and fighting this disease was wearing me out. By this point, a compressed vertebra in my spine had restricted my movement so severely that walking unassisted was an impossibility. Knowing I would never make it to the bathroom, I rolled onto the floor, trying not to be sick in the bed. As I crouched on all fours, bracing myself against the waves of nausea, I thought am I really dying?
Struggling through the weekend, I made it to my internist the following Monday. After an IV of fluids and extensive lab work, I felt better going home and had hope that I would regain my strength. As rough as the previous two months had been, I was still unprepared for what my doctor said when he called with the lab results early the next morning. My kidneys were failing, I had little time left to live, and a call to hospice was the next necessary step. No one thought I would make it to Christmas—unless I were willing to take a final chance.
My doctor had spoken with the oncologist who referred me to MD Anderson at my initial diagnosis. She said there was a window open where I could possibly buy some time with standard treatment. The only caveat was that I had to decide right away because time was running out on my body’s ability to respond. This may sound like an easy call, but no one can underestimate the power of pain and exhaustion to steal our will to live. The temptation of hospice pulled unyieldingly at me. The spinal compression in my back pressed bone against nerve, which kept me in almost continual pain. Along with straining my weakened kidneys, the prescribed opiates left me with more nausea than relief, so I had stopped taking them. My weight had dropped so significantly that in my undergarments, I looked like a praying mantis. I could no longer sit up normally or drive a car or take a bath or dry my hair. Small efforts like putting my leg into a pair of pajamas left me in tears. All drive, all fire, and almost all hope had drained from me. I felt my light fading, lost to a shadow woman creeping in to take my place. The only motivation I had to keep going was that I could not face my children and tell them I had not done everything I reasonably could to keep fighting. I took the window.
When I was initially diagnosed, I had two options. I met with a team at MD Anderson that outlined various clinical trials with the possibility of side effects so life-altering I could not assent to being an experiment. What’s more, my team hoped to buy me maybe twelve to eighteen months before the cancer came back. In decidedly unscientific terms, Myeloma treatment for patients in my risk stratification boils down to kicking the can down the road. I know cancer patients whose lives were saved through clinical trials, but my story is a little different. Participation in these trials felt like acquiescence—like signing over my body and my peace for a shot at a few more months, only to face the same battle again and again.
My other option assured peer-reviewed, scientific research along with testimonials from various naturopathic doctors, and cancer survivors telling me I could beat this disease without putting poison in my body. It looked like my only shot at a real life, so I took it. I jumped in with everything I had. My already-clean diet became more stringent. I fought pain with morning ice baths and evening saunas. Weeks turned into months of a regiment of countless supplements, hours-long protocols, and specialized weekly treatments at an integrative wellness center two hours away. Although my numbers were getting worse, I felt relatively good and figured I just needed some more time. Until, of course, time ran out.
I understand now that my oncologist here and the team at MDA were initially eager for me to join the clinical trials because my lab work at the time of my diagnosis indicated that this disease was treatment-resistant, aggressive, and severe. Three strikes that take standard treatment off the table. They felt strongly that clinical trials were the last hope for me. The door is still open for me to return to MDA and participate in the trials, but I opted for the standard treatment here at home. Not only because my overall survival expectation is roughly the same, but also, and more importantly, I have gained a perspective I did not have all those months ago.
In those moments when I am unflinchingly honest, I have to admit that I chose the natural path because I felt like I had some say in what would happen to me. I convinced myself that I had control over how I crossed the finish line. I wanted a miracle—but I wanted the one where I got to steer around the potholes and speed bumps I anticipated along the way. I knew this cancer would come with crosses, but I wanted to choose them myself. It didn’t work out that way.
When my oncologist and I talk, she knows I am fully aware that regardless of what my numbers are, the science says the cancer will come back. Without a miracle, I will die from it. Right now, the treatment is working beautifully, even though some complications have prevented me from being able to receive the full protocol. I am working through the frustration of side effects, but I am growing stronger every day. My idea of a miracle has changed dramatically. I used to want clean numbers on my labs. I wanted to ring the bells of being cancer free. I wanted my old life back where I could run on the beach and hold my grandchildren and dance with them in the living room. I wanted guarantees without a trace of the smell of the fire that burned down my world. I wanted God to answer my prayers my way. But friends, we do not get to choose our miracles. We do not get to decide how they come to us, either. We indeed have free will, but the idea that our choices determine all the paths of our lives is a mirage. The longer we chase it, the more we come up with a mouthful of dust.
My miracles have come packaged only in the childlike acceptance of what I cannot manage. My prayers emanate from one deep well—that God give me the strength each day to show up in this life with true faith, hope, and love. That he equip me to be the mom my children need and the wife, friend, and daughter whose countenance exudes such joy that anyone who knows me rests in the assurance that God never lets us down, even through the toughest battles of our lives. My doctors, as brilliant and wonderful as they are, cannot save me. The pharmaceutical industry, as quickly as it is making strides in cancer research, cannot save me. And I, with all of my herculean efforts to follow the perfect protocol, cannot save myself.
The only one who can save my life is the one who gave it to me in the first place. The one who patiently waits out my stubbornness and who gives me a miracle each morning when I open my eyes. The one who reminds me that he alone animates my every moment with breath and who buttresses my heart with a joy that transcends this world. The one who lights my path one step at a time and who surprises me with the treasures of leaning on him as I journey. He saves my life every day. I do not know how many steps are left for me here, nor do I need to. I am learning to trust the author of my story.
It was only when I gave up the illusion that my hands were on the steering wheel that peace finally pulled me close, and I exhaled as a child safe in the arms of a tender parent. When we ask for healing, God always starts with our soul. I have much to say about that later, but for now I will tell you that we are all called to cross the bridge from let this cup pass from me to not my will but yours be done. I know the road appears dark and terrifying, and sadly, suffering waits along the way. If we are willing though, God offers his hand and a promise to stay with us through it all—even when the nightmare of death threatens to close in around us.
Regardless of your trial, if you are bracing yourself against the fear of crossing the bridge, against the fear of release into the arms of the God who created you, I know that terror. I can offer you only the assurance that God’s love and mercy never disappoint, and the good he has for us really does exceed our deepest imagination. I cannot cross that bridge for you, but I can be here waiting, praying, and cheering you on. And I can promise that all you hope from life is waiting here, too. You just have to start walking.