Escondido, California, United States
|Original illustration dated 1865,
by John Tenniel (1820 –1914),
for Lewis Carroll’s Alice in Wonderland.
The voice is barely audible. Is that because Iris is upstairs in her room and I’m downstairs reading in the living room? Or is it because…? I drop my book and run upstairs.
Iris is lying on her side in bed with an expression of intense concentration. She sees me in the doorway. “Alice in Wonderland,” she murmurs. She need say no more. It simply means that the most bizarre, mystifying, and officially unnamed reaction that my Kenyan “daughter” has encountered thus far during her chemo has returned.
When this reaction first appeared two weeks ago, I tentatively attributed it to the Compazine, an antiemetic that sometimes causes unpleasant mental reactions in people who aren’t psychotic, mostly due to its structural resemblance to antipsychotic drugs. Was this a variant of that so-called “zombie” feeling? It wasn’t mentioned as a side effect of the chemotherapy or post-infusion medication, or the benzodiazepine medication she’d been given for sleep. When it’s late at night and you’re not the treating doctor, a long-shot seems better than no shot.
I’d since surfed the Internet for words to describe this experience so that she could report it accurately to her doctors. “Weird” and “strange” fell short, and Iris’s own words were impossible to reduce to a sound bite. An articulate woman fluent in two European and three African languages, Iris could only manage, “My head feels like it’s expanding and expanding like a balloon and is out there, and my body, at the same time, feels like it is shrinking.”
Fortunately, I’d found a site where people who have bizarre perceptual experiences write to one another; one writer described a similar experience that he called the “Alice in Wonderland Syndrome.” First described in 1955 by John Todd, an English psychiatrist, the informally-tagged “Alice in Wonderland Syndrome” is a bona fide neurological phenomenon that primarily occurs in people who suffer from migraine headaches. The disorder causes a disorienting experience of distorted space, time, and body image, identical to Alice’s experience in the syndrome’s namesake book. Lewis Carroll, the author of Alice in Wonderland (1865), coincidentally enough, suffered from migraine headaches. Interestingly, Iris remembered that prior to her first episode she’d felt a left frontal pain in her head. I had advised her to take Tylenol, which promptly and totally dispelled the reaction.
Now, two weeks later, it is back. That first episode occurred at night, within 48 hours of her first infusion and less than 12 hours after the Neulasta shot she took to stimulate her body’s white blood cell production. This time it is five full days after an infusion, four days after the shot, and occurred in the afternoon, not at night. Is this significant? Also, each episode began while she was attempting to sleep, nap, or rest. Is that significant?
When Iris reported this symptom the first time, the nurse practitioner at New England University Hospital (NEUH) who quarterbacks her chemotherapy neither recognized the phenomenon as a reaction to the chemo or the Neulasta, nor had heard of such a phenomenon. Her guess was that it was likely an anxiety state— meaning anxiety caused the reaction, not vice versa.
Part of me knows I am thinking more as an investigator here than as a host-parent, the role my wife, June, and I had volunteered for during Iris’s two years of graduate studies in the United States. But that was before Iris was diagnosed with breast cancer on the cusp of completing her program. Was it a lifetime ago that June and I drove to her apartment, loaded up her things, and took her into our home so that she wouldn’t be alone while waiting for lab results and preparing for the worst?
“Where’s the Tylenol?”
“I left it downstairs by the microwave.”
I hurry downstairs to get the bottle. Iris takes a tablet, and we both wait, hopefully. Gradually, over the next ten to fifteen minutes the symptom clears, just like the first time. When it returns a third time, six hours later, Iris simply takes the Tylenol, and it goes away again. Is this Todd’s Syndrome? But where is the migraine? I am so glad that Iris is a person of faith; simply knowing that she is in others’ prayers seems to lift her spirits. And I’m glad, too, that my sensibilities as a father and as a general physician are available to her as well.
For the moment, at any rate, it seems we three–Iris, June and I–like Alice in Wonderland, have fallen down a sort of “rabbit hole.” Things are no longer as they used to be or even as they ought to be. Our perspectives seem to be changing. But one thing is unchanged: We are going down this rabbit hole together.
It is the next day. Iris experiences two more episodes back-to-back. Tylenol brings prompt, but temporary, relief. The second episode occurs only hours after the first.
Iris confirms that these episodes, like the initial ones, began while she was lying down and that all the episodes occurred while she was thinking excessively.
“I think too much,” she says decidedly.
Is thinking, then, a common denominator? But which came first, the weird sensation or the thinking? During the two recent episodes, she had a headache. She felt it in the left frontal area. Are we dealing with migraine aura? Why is Tylenol losing its punch? Why do I feel responsible?
“Think back,” I tell her. “When it disappeared after taking the Tylenol, was it completely gone, or was it reduced, but present enough that you could induce it if you tried?”
She thinks a long time. “It was there. I felt I could induce it if I dwelled on it.”
Iris didn’t sleep that night. “Wonderland continues,” she tells us in the morning. But we all had difficulty sleeping. The temperature was, and will again be, in the 90’s; our first local heat wave seems to correspond to the worsening of her symptom. She tells us she got some relief when she applied cold compresses to her head.
“It helped keep me calm,” she reports in the morning. “It was so scary.”
Now, in addition to the Gordian knot of medical and psychiatric causes of her Wonderland symptom, Iris becomes fearful of sleep.
“I’m afraid I’ll slip into the Wonderland and won’t be able to shake it off, and it’ll go on and be me,” she admits. “I want to know what is going on because I’m afraid I’ll lose control.”
She won’t take the nighttime lorazepam her doctor prescribed to help her sleep.
It is Monday morning, time to call her doctor. By now I am pondering lack of sleep as the trigger for new, persistent headaches. Have her efforts to solve this problem, in a counter-productive way, kept her focused on her pain and, as a result, paradoxically perpetuated the experience of Wonderland? Now I can’t stop thinking.
The phone rings. It’s the nurse practitioner from her oncologist’s office. Iris summarizes the weekend, describes the return of the weird mental experience, which no longer responds to Tylenol, and confesses her private fear, that she has malaria or parasites. The nurse says she’ll confer and get back to us.
When the nurse calls back she proposes this plan: simultaneously address all potential contributors. We’ll address the fear and anxiety with daytime lorazepam, the headache with Ibuprofen and Tylenol, and correct any electrolyte imbalance with water and Gatorade. We’ll address the lack of sleep with Benadryl. Again, the assumption from NEUH is that Iris’ Wonderland is an anxiety state related to the chemo. Although skeptical of this diagnosis, I am comfortable with any plan that puts relief first.
The lorazepam relieves the anxiety. Of course, the water plus Gatorade, like everything else that is swallowed, brings pain from her sore throat and esophagus, but, as Iris puts it, “It’s manageable.” Hydration proceeds to eliminate risk of hyponatremia and other electrolyte imbalance, potential causes of headache. We are forewarned by the nurse: “If you feel thirsty, it means you’re already dehydrated.” An impromptu visit by five of Iris’ classmates energizes her. But to June’s and my horror, she declines Ibuprofen or any daytime lorazepam.
“Are you sure you are up to this?”
“I don’t want them to lose interest,” she insists. “I don’t want them to turn away.”
Incredibly, despite being off meds, the electricity outage in our neighborhood, and temperatures in the 90s, Iris actually feels invigorated and uplifted from the visit. She even has an appetite for ice cream—she tries and loves the maple flavor.
Later, after taking the 600 mg of Ibuprofen, I ask, “How are you feeling?”
“More alert. My spirits are up.”
“The anxiety is gone.”
“Wonderland, very far away or very close?”
She closes her eyes, waits, and then opens them. “It’s not there,” she says quietly, as if not wanting to be overheard. “It’s not there.”
That’s more good news. And the electricity is back on.
“What did you think of your friends’ visit?”
“My friends boosted my energy. I get energy from these visits.” That night she takes Benadryl, falls asleep, and sleeps comfortably through the night.
Next morning I find her up making breakfast. This is a first; Iris has always slept late, usually from pulling late nights typing, calling home to Kenya to speak to her children before they leave for school, or lying in bed “thinking too much.” She sees my frown and anticipates my question. Can she tell I’m holding my breath?
“No wonderland, Dad,” she says with a smile. “No wonderland.” I exhale.
Has it been two years now that we have been host-parents to Iris? In the beginning this meant little more than visiting her at school from time to time, trips to museums and places of historic interest, dinners out, Thanksgiving with our family. We intended to be nothing more than familiar faces for a foreign student and guides and interpreters to things American. We were simply volunteer participants in a special program at her university. But what does it mean now that the time has come for her to return home while she is sick with a deadly cancer? Not only have Iris’ dreams been compromised, her peace of mind has too and, with hers, ours as well. Not only has her life been thrust down a rabbit hole, so to speak, but so has ours. We shall all need a map plus a source of light. I begin keeping a journal and continue to wonder.
Who prepares her meals? Who goes to the door should her friends visit? Who invites them? June and I live by unspoken but understood expectations, but what are those expectations now? And what a far cry these are from our questions of only a few weeks ago, like: What is causing that lump over her collarbone? With tests showing aggressive, advanced breast cancer at stage III, will she want to complete her thesis and deal with this after graduation? Should she be alone in her cramped apartment—uncertainty, dread, and terror her only companions while completing her thesis? As there is no treatment for this in Kenya save mastectomy, where will she live and how during an unplanned third year should her student insurance cover her here in the USA?
June and I are following our hearts, but it is obvious Iris now depends on us to use our heads. People who know what we have taken on say we are blessed and that Iris is blessed to have us. This makes us feel noble. Cold comfort. More relevant is our sense of trepidation. We don’t know what this course entails, where it will end. When you lead with your heart, feeling noble has no currency.
As a psychiatrist, a practiced keeper of stories, I know something about listening to and putting together a person’s account, from their valley of pain, fear and loneliness—even when I must join them there. I shall be, in my journal, the participating observer, Iris the observing participant. My stories—our stories—I resolve, no, I pray will hopefully serve as a lantern in the darkness to help us not only find our way, especially when we stumble, but help us identify and track unexpected and unwelcome visitors (or visitations as has already happened). But such a journal and such intentions, I am painfully aware, are little more than an attempt at anxiety management and confidence-building, for me. Nonetheless, putting on a brave face like my two companions, I do hope that documenting our journey will at least ensure that Iris, June and I keep moving in the direction we must go, towards life and towards the promises we have all pledged to keep: she to her sponsors and her family in Kenya; we to Iris and ourselves.
Iris has stumbled. The other runners, her classmates, are no longer in sight. They’ve crossed their finish line long ago; they’ve returned to their countries and families with their master’s degrees in sustainable international development. Where we are is dark and unpredictable, and Iris must make her own way toward a different finish line. This new destination is no longer academic. It is about keeping a promise. We are now a company of three.
ELI CANNON, MD is a pseudonym. His account is adapted from his unpublished memoir, Caring, Giving, Clashing: Memoir of an Improvised Intercultural Exchange. This chronicle describes a retired American couple who bring an African exchange student into their home for sanctuary and respite during her unanticipated year of debilitating treatment for an aggressive and malignant form of breast cancer, diagnosed shortly before completing her graduate degree. Despite the best of intentions and a happy outcome of full recovery, this team of three barely makes it across that finish line sane, on task, and on good terms. It is as if there were another cancer around, one that magnified all manner of issues in their intensity, reach, and damage. Cannon lives in Escondido, California.