The whisper
If you or someone dear to you has late-stage cancer, you may want to skip this one. I don’t pull any punches. I do want to be clear that healing from cancer is a complex, vulnerable, and often-private undertaking. It will never be my intention to criticize anyone’s journey on their road back to health. We all heal best as we know best. To that end, I am in no way qualified to give medical advice or, for that matter, counsel of any kind to another patient on what to do. I also want to note that many people have been helped by the system and the doctors at MD Anderson. I would not presume to discredit the institution or dishonor someone who found the help they needed there. I tell my story because it helps me feel connected to a life that is important to me, and if hearing about my journey helps someone else not feel so alone, I am blessed to have them as company.
It has taken me some time to get this post out because after I was diagnosed with late-stage multiple myeloma, I felt like I fell down a well. Doctors’ appointments, and meal plans, and supplement protocols, and well . . . not dying became the center of my life. I am finally emerging with some answers, but it took time and more than a few setbacks to get here.
When I first went to MD Anderson in mid-June, I met with an oncologist who talked to me at some length about participating in clinical trials. While I sat in the laminate guest chair in my room, my doctor used the protective paper on the back of the examination table to draw diagrams combined with a chemistry shorthand to teach me about the drug cocktail chemotherapy she recommended for me. She mentioned a standard care protocol, but let me know that because of the extent of the light chain disease diagnosis, combined with a chromosomal abnormality, standard care treatment would not work for me. While many people can receive care which controls their myeloma, the complications in my diagnosis make having any real hold on this disease impossible outside of a miracle. Even my healthy lifestyle and relative youth offered me no advantage. To put a finer point on it, a seventy-five year-old man who has done nothing but drink bourbon and eat pork rinds and cake his whole life stands a better chance of responding well to treatment than I do.
During my meeting with my oncologist, I diligently took notes. I asked about side effects, and she told me that I may have some mild discomfort and fatigue, but I wouldn’t lose my hair (at least not in the initial stage). She also said that she would look into any other trials for which I might qualify and have reps from those companies contact me. I left feeling comfortable that she knew her stuff but felt a hitch in my peace every time I considered these drugs.
Late that night, I sprawled out on the couch, going through my notes, filling in any gaps and looking up all the information I could find on the chemotherapy she insisted we start right away. Because I am a researcher by nature, reading the eighty-five page handout on each drug recommended to me was a given and something that surprised my oncologist when I showed up again with questions. What I found in the literature gave me instant pause. Among the side effects were stroke, liver failure, heart failure, kidney failure, blindness, and—most significantly—death. Because these drug combinations and doses were still in the clinical trial phase, the side effects were not “obligatory reporting, just in case” as I would later be misled by a physician. They were happening to real people. Some of the recommended trials were dose-specific, which means that a linebacker for the Chicago Bears and I would be given the same dose, regardless of our size, and our reactions to and ability to tolerate that dose would be observed and recorded among the other side effects reported.
After a few standard tests the next day, I was sent home for two weeks before I was to return for imaging and treatment. During my hiatus, I needed to give my soul a break, so I sought some respite from the chaos by losing myself to the beautiful mind of Malcolm Gladwell and his audiobook David and Goliath for awhile. When I came to the chapter on Dr. Emil Freireich, however, my heart pounded so intensely I had to pull my car over to process the brutality pressing hard on my chest. Dr. Freireich is renowned for his tough-love (probably more tough than love) approach to treating childhood leukemia. He is credited with creating the toxic drug cocktails that, after many failed trials, began saving children’s lives. In describing the clinical trials, Freireich says they “fried some kids’ brains” and induced an unimaginably painful death for others. They were willing to take that chance with these children because “they were going to die anyway.” I felt my breath come back to me as the reality of it all settled in. The doctors at MDA are downplaying the side effects of these clinical trials because I have a late-stage cancer, and they figure I’m going to die anyway.
My instincts were confirmed when I met with my oncologist at MDA July 1, a date I’ll never forget because she told me I had six months to live. She promised me I would not be alive this time next year. She gave me no hope outside of the clinical trials and discouraged me from seeking any alternative treatments—saying my chances for living were the same. Then, I guess as a bonus, she described my death in great detail. I have to tip my hat to her for honesty. While she talked, I couldn’t take my eyes off her newly-manicured green nails and her bright eyes just above her mask. It’s weird what stands out to us in these moments. The memories that anchor us to a reality our souls try to escape. I could not get away from my curiosity about those nails—so out of character for a physician at one of the most prestigious research hospitals in the country. I wondered at her rebellious streak and at what she might do to thumb her nose at the establishment if it meant saving her own life.
The spell of those green nails broke for me in what she said next: “We hope to buy you eighteen months to two years before the cancer comes back. There is no cure for this cancer, and it will continue to come back until you die from it.” I understand many people would roll the dice for a chance at eighteen months, but I could not violate the pull inside me telling me not to do it. The drugs couldn’t guarantee me one day, or give me any significant hope that the treatment itself wouldn’t kill me. I figured if I am going to be someone’s front line, I’d volunteer for an army that had fewer risks—after all, I had nothing to lose, right?
Even in writing this, I realize how flippant and easy it all sounds. But can we talk about how much we suffer in moments like those? When our hope drains and we grasp at answers and our minds flood with all the people we love and how much they need us to be alive for them. And how we wonder if we are playing fast and loose with our own lives. Our ears ring with booming canon fire of fear. And somehow, through the smoke and fog, comes an unmistakable whisper saying this way.
On the same evening I was told I would be dead in six months, I had a full-body MRI scheduled. I arrived at the imaging center promptly at 8:15, slipped into hospital scrubs that were clearly intended for my linebacker friend, and made my way to be covered face-to-toe with the camera cage for the MRI. “You’ll be in the machine for about an hour and a half. Try to lie as still as possible,” the tech instructed me. As they slipped the cage over my face and put the headphones on me, I said a silent prayer asking Our Lady to pray for my peace and one to the Lord: God, I’m just a person. An imperfect human who is doing her best to hear your voice and to be wise with this one life you have given her. Because you don’t come sit at the foot of my bed at night and tell me what to do, I’m asking you for something—any sign that you are with me and that I am doing the right thing by turning my back on this treatment.
God didn’t work a miracle, at least not one where the staff all rallied around me and told me I was cancer free. He didn’t bring a calming rain or have a butterfly land on me. Instead, He answered quietly, just under the hum of the machine.
As the MRI whirred, the first song came through my headphones was “Ave Maria.”
I did my best to lie still as I blinked tears into my temples. What happened next, I can’t explain. It was as though God lifted me up into a pool of water and let me float blissfully right beside Him. I have never felt such peace. That hour and a half in the MRI felt like minutes. I emerged with no clear plan, but my trust in God was unshakable.
How many times has the chaos of despair torn at us? Those times when we felt that panic and the dry desperation for answers? We have all had moments like Elijah, hiding in the cave and looking for God’s voice to rise above the raging wind or the earthquake or the fire. Maybe you are there right now. Gosh, I get it. I have had so many moments where my legs were coming out from under me, and I would steal away into my room, agonizing through choked-back tears, asking God if I were dying. I have longed for Him to show up bigger than life and scoop me up and away from the pain. But the voice of our comfort is found, instead, in the still, small voice.
Through this journey I am learning that I cannot offer promises of knowing God’s will. But I’m also learning that knowing the end from the beginning is not our job—that’s where trust comes in. I can offer one promise, though.
When we need it most, that whisper will always be there.