The call came on a Thursday afternoon in late May while I was teaching a clinical training: a nurse reporting the results from a screening test done a couple of weeks before by a dermatologist (of all things) “as an abundance of caution to rule-out a rare form of cancer” based on my symptom of facial flushing. Dispassionately, the nurse told me, “Your screening number is very, very high, which the doctor notes is an indication that you likely have carcinoid. Her instruction is for you to make an appointment right away with your primary care physician for follow-up; this isn’t something our office treats. I’m sorry, but I don’t have any more information.”
With that sixty-second conversation with a nurse, my world experienced a seismic shift in the second personal earthquake in as many years. And so began my six-month journey with a rare form of cancer.
Quickly I immersed myself in all the information I could find about carcinoid, an uncommon cancer affecting the endocrine system. The good news is that carcinoid tumors are usually slow-growing; the bad news is that they often are hard to detect, especially when they aren’t causing any overt symptoms, which was the case for me. The worse news I discovered is that neither my PCP, nor the first specialist I saw had more than a cursory knowledge about carcinoid, which is to be expected since it’s both rare and way outside their normal scope of practice. The result for me, though, was a crazy roller coaster of medical uncertainty, chaos, and interminable waiting.
Like most everyone diagnosed with cancer, I had my moments of fear and angst. (Spotify informed me in the annual “Wrapped” report that my most-played song for the year was “You Are My Hiding Place” by Selah.) The hardest thing initially was to wrestle my mind away from the negative what ifs, like, Will I get to enjoy the swim spa I’ve ordered that’s being delivered soon? or Can I still manage my favorite strenuous hike? or darker, Will I get to see my grandchildren grow up? The lengthy time of waiting and not knowing tried my patience and increased my anxiety.
Yet from the first time I heard, “You almost surely have cancer,” I also received an immense grace: an absolute certainty that my MamaGod had brought me through tons of hard stuff in my life, and that She was not going to leave me now. My daily, sometimes hourly, prayer was for the grace to trust God whole-heartedly in this development.
After I got my head around the fact that I apparently had cancer and that figuring out everything about that diagnosis and treatment was going to be a long, drawn-out process, I set an intention: I would actively choose to put this situation on a very back burner unless there was something specific happening like an appointment or procedure. In the meantime, I was going to keep living and loving my wonderful life in joy and gratitude.
For the most part, I did, with the help of an ever-present, loving God, and the hands and hearts of an incredible host of supporters. I asked them to pray for the daily grace to trust God for that one day, which was the only way I knew to walk this unknown path. Fortunately, I have about 30 years’ experience taking life on life’s terms one day at a time.
From doctor to doctor to doctor, all said that nothing else known would cause such a hugely elevated number on the screening test for carcinoid, which measures the level of excess serotonin in the urine. Yet CT and PET scans didn’t detect any abnormality. Sounds great, except that I discovered that the PET scan performed wasn’t the specialized type that my research (and the report from the radiologist who reviewed the CT scan) revealed should be ordered to detect carcinoid. To his credit, the gastroenterologist called me personally when I expressed to his nurse my distress about receiving the wrong test. He was surprised that there was a specific type of PET scan recommended for detecting carcinoid and apologized for overlooking that recommendation. I appreciated that kindness, and I was dissatisfied with his treatment plan to wait six months and see what happened with my body. Despite carcinoid being an endocrine-related cancer, he didn’t think that an endocrinologist would be any more helpful, which confirmed my fear that my extensive research had yielded a body of knowledge that seemingly surpassed his.
Yes, it was good news that my body wasn’t riddled with tumors – and it was also crazy making when repeats of the screening test continued to be high for a carcinoid marker. In determined self-advocacy, I returned to the internet and discovered that a carcinoid specialist practices at the Vanderbilt Endocrine Center, right in my backyard. I got the required referral and called for an appointment. The first availability was for late November, which was four-and-a-half months away. Weeks had passed between each referral, test, and its result. The waiting got increasingly harder as I experienced significant, progressive fatigue.
Then came a flash of good news: I found a study published in the Canadian Journal of Endocrinology that showed that the supplement 5-HTP, which influences serotonin, can hugely elevate the screening test for carcinoid. I mentioned taking that supplement to all three doctors who ordered the serotonin-measuring screening test, and all were adamant that it would have no effect. Based on the research study, I hoped that they were wrong, and I stopped taking 5-HTP four weeks before the last screen in early October. Those results came back normal. Wow! I felt more hopeful – and also confused by the seesaw of conflicting information. What was real? (Another very old and, simultaneously, very fresh question.)
Thanksgiving week I finally saw the Vanderbilt endocrinologist who specializes in carcinoid. She was familiar, of course, with the impact that 5-HTP had on the screening test, and she is 99% sure that I don’t have carcinoid cancer! She said I was her first patient in 30 years of practice who arrived with a printout of a medical journal article (and a digital copy pulled up on my phone) that provided the exact diagnosis (a false alarm) that she was planning to share. Ha! She was also appropriately horrified at the roller coaster I’ve been on the past six months. I felt heard and validated, and that, alone, is very healing.
During this season of giving thanks and celebrating Christmas, my gift of no carcinoid is amazing. Equally beneficial, though, are the gifts I received during this season of “cancer.” I am grateful never to have wavered from trust in a loving God who was always with me. Those who knew about this journey have been supportive and gracious and kept me covered in prayers and good wishes. I’m so thankful not to feel alone the last six months.
Now I get to re-adjust to living from a mindset of health instead of from one of cancer brewing in the background. This shift has been surprisingly hard, and I still feel fragile. I keep waiting for the other shoe to drop, which has happened often in recent years. I’m still dealing with the fatigue of three years of unrelenting, life-altering stressful events. I’m getting to practice giving myself grace, which is a grace in itself.
I’ve learned anew the benefit of staying in the moment – the discipline of being right here, right now, which is surprisingly hard when you’re afraid and in emotional distress. I’ve found that when I haven’t felt “seen, soothed, safe, and secure” as Dr. Curt Thompson aptly puts it in his terrific book The Soul of Desire, I have the capacity to soothe myself (sometimes, at least). Swimming and being in nature have helped tremendously, even when I can’t swim or hike as effortlessly or as far as before. Being quiet with God has helped more. Soothing music and the nuzzle of my constant canine companion Kevin have helped most in the everyday moments.
The deeper truth is that I also had my fair share of near-debilitating distress. At times I was a hot mess, a blubbering puddle in my back yard or bed, crying my eyes out and heaving with racking sobs. I found that my margins were often razor thin, and some minor thing unrelated to cancer would put me over the edge. More than once as developments unfolded, I fled home to have the safe space to come unglued in privacy. At times I needed more comfort than friends could provide, and I felt shame at being so “needy” (another very old message). These things, too, were grace as I found that it was OK to lean into the dark places — that I didn’t have to be THE MARNIE FERREE who always had it all together. I could be messy and have needs and be in process with outsized feelings.
Like many people who are diagnosed with cancer, I’m evaluating life, priorities, relationships, and legacy. That process won’t end just because I’m blessed to be free, suddenly, from the cancer I never actually had. (Even that reality prompts self-doubt and embarrassment at bothering people with this false alarm. Ah, another negative belief I get to challenge.)
I’ve seen that while life often brings unsettling, even scary surprises, sometimes we’re also surprised by joy. I expect that Joseph and Mary felt similar opposites as they wrestled with and welcomed a Christmas “surprise.”
If you are journeying through a “cancer” season this Christmas, I pray that you, too, have moments of feeling certain of God’s loving presence, and even some moments brightened by flashes of joy. If you are blessed to be in a good space this holiday, I hope you remember that someone you know is probably struggling and could use a sweet contact with a compassionate angel. Be that voice and light. Bring joy to someone’s world.
Marnie C. Ferree