Living with Gliosarcoma
My oncologist told me this morning that my tumor is bigger than it was in June, and big enough to warrant a resumption of radiation and chemotherapy treatments. These could start within a couple of weeks.
Though it’s not clear they’re doing anything to fight my tumor, I’m going to continue my relaxation, meditation and visualization exercises simply because they’re making my life more enjoyable.
My brain tumor is back, it seems. The last few MRIs have shown a slowly growing pair of white dots near the black void where the old tumor used to live.
I had imagined this moment of reckoning as the beginning of the end, as a crushing blow to my spirit. The classic unraveling of a glioma case seems to accelerate at this moment. A second resection may be warranted, perhaps even a third in short order, with the understanding that these interventions would only delay an inevitable, irreversible and rapid decline.
And yet, after living through this “moment” I find it hard to remember as such. It was not a discrete moment but a strung-out series of hints and possibilities. My oncologist maintains the dots (one nearly a centimeter in diameter now after six months of monitoring) are inconclusive. A neurologist friend-of-a-friend who shared the images with an expert colleague reported it’s likely a recurrence.
I was busy guiding kayak tours and grieved only lightly and inefficiently for several weeks after the June MRI. For a couple of years I had pushed the specter of recurrence out of my mind with a resolution to live “one day at a time,” leaving the future in a fog. That approach seemed both practical and wise, but didn’t ease the bitter disappointment I felt at seeing my death take shape again.
My dear and courageous girlfriend encouraged me to try alternative treatments ranging from acupuncture to mistletoe. But each effort seemed so small, so arbitrary and desperate. I didn’t want my final months to be consumed by a vain striving. I wanted to “live my life.”
One day in mid-July I pulled a small paperback book from a shelf in my bedroom. Why Me? is the story of a boy, Garrett, who destroyed his own brain tumor with the power of his mind. I remember hearing about the book, when I myself was a boy. My stepfather described Garrett’s treatment as like playing a video game in his imagination, zapping alien spacecraft and thereby, somehow, killing the cancer cells.
Shortly after my diagnosis and surgery, my mother tracked down a copy of the book and purchased it for me. I don’t know why I didn’t read it sooner. Perhaps I considered the story fanciful and tinged with the same kaleidoscopic mysticism that colors their lives and home in the New Hampshire woods. It seemed tremendously difficult if not actually magical.
I had the habit of thinking of my cancer as something that happened to me, something uncontrollable and unreachable by any mechanism of action I might muster for myself. I championed the possibility that I might live for many years, but never believed I possessed the power to influence the probability of success. I never questioned the assumption that most of my body’s biological processes (digestion, circulation, etc.) were simply beyond the power of conscious thought to sense or direct.
The premise of Why Me? and similar books such as Getting Well Again is that this assumption is wrong. Starting with the observation that what one believes about his or her own health has a measurable impact on its quality, their prescriptions are psychological and focused on stimulating the immune system through deep relaxation and reflective meditation. The goal is to expose and improve beliefs that may actually suppress an immune response that would normally cull those rogue cancer cells alleged to occur rather commonly in the human body.
The startling conclusion of this line of thinking is that the mind contributes mightily to both healing and illness. I did not consciously desire to have cancer, but unconsciously I might have yearned for the benefits a cancer diagnosis provides: freedom from the trials of working a full-time job; rest and relaxation; permission to do what I want; a fresh start in life. My odd sense of relief at hearing my diagnosis can finally be explained, and accepted, more than three years later.
Upon reading these books I was struck simultaneously by a wave of sadness and a surge of determination: sadness because I might have contributed to my own cancer; determination because, if so, then I could fix it. For years I had blamed myself (on the basis of a crude and self-hating suspicion) for wanting cancer. The fact that others have found relief in considering culpability for their own cancer inspired me to reimagine my illness as less of a crime and more of a cry for help.
While I readily consumed this advice, I wondered why, if it is supposed to be so effective, it is not more often heard. Perhaps the idea that cancer (like illness in general) is not bad luck so much as a coping mechanism for psychological stress seems to blame the victim, and thus remains unwelcome in a world that reserves special care and comfort for its sufferers. So too a doctor who suggests patients must work to heal themselves, rather than simply subject themselves to treatment, might encounter incredulity in “consumers” of health care.
Let me explain something about the blight. It is, of course, fiction. But it is based on a true story: my life. Its function is to imagine my body’s heroic efforts to save “the world,” which is, to it, myself. I am now fighting the tumor in my brain with my mind.
Both Why Me? and Getting Well Again explore the use of active imagination, or visualization, to motivate the immune system’s white blood cells. Their advice is to attack the cancer symbolically by visualizing the cancer-fighting efforts of the white blood cells as a confrontation between good and evil.
Some symbols are supposedly more effective than others. My fantasy heroes should be visualized as stronger, larger and more numerous than the cancer cells, and as “powerful beings of some sort, whether human or animal, that possess conscious intentionality… and are responsive to direction.” ([10. Page 115 of Why Me?, Stillpoint Publishing, Walpole, NH, 1985.])
My early attempts at visualization had tiny protagonists sneaking around the back of house-sized cancer cells and setting off small explosions. Gradually, as I began to understand the mutually supportive relationship of imagery and belief, the battlefield tilted in my favor. My fantasy of gaining ground in this war of symbols features appropriately small and weak foes. I portray the cancer cells as “pathologically stupid” with the idea that they would destroy the world, and themselves with it, if unchecked.
I probably should not have written that the sleazies are “hard to engage.” It’s better fiction but worse therapy. Imagining the sleazies as less sensitive and more helpless led me eventually to think of the cancer cells not as a force of evil but as weeds in a garden: deserving of extermination, yes, but plain to see, immobile and defenseless. In addition to the battles, I began to visualize pulling weeds from rich, dark soil as “the crop” grew tall and strong.
It might look like a lot of sitting-around-doing-nothing, but believing is work. Turning an idea into a belief takes practice. The practice of believing becomes the habit of believing becomes the belief becomes the reality, is the plan. I work to believe, to save my own life.
It is work recorded in tiny checkboxes on a calendar beside my bed. The work of relaxation, meditation and visualization is ordered, intentional and focused. It is not “chilling out,” napping or daydreaming. With an additional regimen of writing exercises, it is also the work of reflecting again on a past I once rejected, of casting off the crutches of resentment and learning to forgive (even myself), and of planning a future with the full intention of living it; all designed to overcome the self-defeating messages of my unconscious.
I imagined attending my son’s high school graduation, in about 8 years. Is it telling that I had never done so, even before my cancer? I imagined good things happening to people I know. I was surprised by how hard it was to feel good about others’ success, and by how hard it was to imagine deserving my own success someday. I had to confront the unsettling idea that I may yet, unconsciously, prefer to fail.
Many of these checkboxes remain unchecked, however. I struggle to make time, to tune out the noise of baser thoughts and sketch again in my mind the details of the healing fantasy, calmly and patiently, while I yearn to move on to other things. I also struggle with a voice of doubt, a low mean voice that has dogged me all my life, it seems. Is it, like my tumor, a regressive and self-defeating aspect of my being? Is it the voice of the tumor itself? Is it the voice of common sense pushing me to the safety of convention? Or is it the voice of that vengeful boy who only wanted to be loved?
I had an MRI this morning: another moment of reckoning.
When I imagined the scene a few days ago I heard the perversely loud honking of the MRI machine as a jubilant song of recovery and an insistent pronouncement of health. I felt the radiologist’s curiosity at the mysterious disappearance of the tumor, and my oncologist’s satisfaction in announcing the news. I imagined the thrill of the prospect of new life, of a renewal of the future, and of the proof of my power to heal.
I won’t know the results until I meet with my oncologist on Friday. But presumably the radiologist has already seen the images and produced a report. What does it say? I’ve only just begun to measure the acceptability of various fates. A complete disappearance of the tumor would be ideal, of course, but any shrinkage would be cause for great joy. Even “no change” is a step in the right direction and hypothetically bearable for a long time. “Bigger” would be disappointing, to say the least.
At the moment, I dare not guess. Garrett, the boy hero of Why Me?, sensed his tumor with such accuracy that he was aware of its disappearance. One day, he tried to visualize it but couldn’t find it. Months later an MRI confirmed that it was gone.
I’d like to have that sense, but it’s difficult to separate intentional visualizations from spontaneous imagery coming the other way. When I began to “see” fewer and fewer sleazies in my visualizations, I took it as an indication of the tumor shrinking, but since then have questioned whether laziness is the cause, since I insisted on seeing each of the sleazies separately destroyed.
Sometimes I’m confident about recovery. At unexpected moments, I find myself feeling pleased. At other times a feeling of a twitch in my brain gives me pause. Then there was this morning’s dream, the most recent entry in my log of recovery efforts:
We were on a rocket that was supposed to crash into a planet. We waited anxiously for the moment when we would be destroyed. But it didn’t happen.