It began with the octopus under my bed. The octopus was green and had come from Venus especially to eat me. I was terrified of it.
Had I been six years old, this would have been natural enough. I would then have been reassured that it had been only a bad dream; the rescuing parent would have provided a flashlight and we would have thoroughly examined the under-bed space together; relieved, I would have relaxed back into dreamland.
But I was not six, I was sixteen. And I wasn’t home in my own bed, I was in a hospital. I knew very well I had been dreaming—but now that I was awake the dream would not go away. That octopus was real as real…
I had had my appendix removed a day or so earlier, and the nurse had insisted I take “something to help me sleep,” which I now know was simple aspirin with codeine. Instead, I kept waking up in terror, and still the octopus simply would not go away. I did make it through till morning, thoroughly shaken but miraculously uneaten, and adamantly refused to take any more sleep aids thereafter.
Then there was the cough syrup, also with a hit of codeine, that sent me down a long, dark tunnel, far away from all human contact or comfort. And the sedative the doctor prescribed before my final exams, that sent me into a near-coma for two solid weeks. And the morphine after my hysterectomy, that made everything hurt worse every time they gave me a dose.
And, of course, the MRI.
Now nearly fifty years old, I had hurt my shoulder in a car accident. The injury appeared to be getting more inflamed, not less, and the doctor suspected a torn rotator cuff, but wanted an MRI done to confirm this. In 1991, having an MRI meant inserting yourself into a gigantic and supremely noisy waffle iron and then lying absolutely still for twenty minutes, staring at that enormously heavy, horribly rattling metal plate two inches above your nose. Not my cup of tea at all, at all.
“Here’s something to calm you down,” the nurse announced. “It’s just a Valium, perfectly harmless.”
Having figured out by this time that I had Weird Reactions to mood-altering substances, I refused the little pill. The nurse, however, was having none of my nonsense. She squeezed my cheeks to open my jaws, threw the pill into the back of my throat and forced me to swallow it. A few minutes later I was climbing the walls, panicked and all set to run out of the hospital in my all too open-ended gown. I was—just—able to give them Beth’s work phone number…
Beth finally managed to coax me back into the machine by dint of crawling in there herself—despite the lack of vertical space, there was plenty of horizontal room for two, or maybe a dozen—and holding my hand while we waited the mandated twenty minutes.
Curiosity satisfied, the doctor doubled my anti-inflammatory meds—which doubled my pain. After several months of increasing misery, an alternative practitioner took me off the meds—to which his diagnostic tests said I was allergic—and gave me a homeopathic; in two days the pain and swelling had disappeared.
And thus did I realize that my paradoxical relationship with pharmaceuticals isn’t restricted to psychoactive drugs. The sad and dangerous fact is that when introduced to my internal workings, most pharmaceuticals either have no effect, produce the opposite effect to that intended, or provoke strong allergic reactions. So do many foodstuffs, to the dismay of restaurant chefs and potential dinner hosts. And for most of my life, the only way to discover if something was a) safe and b) effective was to try it and see what happened…
Fortunately, most of the foods my system reacts to are not high on the must-eat-to-be-healthy list. The dietary absence of cane and beet sugar, honey, corn syrup, chocolate, and artificial sweeteners of all kinds is, I would say, a blessing. Being highly allergic to hops has saved me a lot of beer money; having to go slow on grains keeps my carbs intake down; there are adequate substitutes for cheese and other dairy items. I certainly don’t feel deprived. In fact, most of the really dangerous foodstuffs simply don’t register as “food” anymore. I enjoy the aroma of a warm chocolate brownie as I enjoy the scent of lilacs: both smell heavenly, but I don’t feel tempted to chew on either one.
Yes, dietarily I get along just fine, and I am thankful to my body for its unorthodox better-health-through-allergies policy. It’s the other stuff that has been a rather scary crap shoot. Nasty infection that won’t yield to alternative treatments? Try an antibiotic—assuming there’s one that will work at all. Then wait, fingers and toes crossed, to see if this chemical can do its job without my body raising serious objections to its presence in the neighborhood. Need something for nausea? Ditto. And as for pain relief, well… You know how the OTC pain relievers warn you that drowsiness may result from consuming that little pink or yellow tablet? Not for Paradoxical Pat, no sirree. The directions on my box of Tylenol (no codeine, please!) or Benadryl should read: “Take two tablets, then begin your nonstop motor trip across the continent. Don’t bother to make motel reservations; you won’t need them.”
Just under a year ago I finally discovered the architect of all this confusing mess. I had accompanied Beth to her appointment with a doctor who practices, as Dr. Shari herself puts it, “Midwestern medicine.” We love her philosophy: Use alternative/Eastern approaches first for almost everything, but do bring out the big Western-medicine guns when you truly need them. While Beth was getting ready to leave, I chatted with Dr. Shari a bit, and somehow the subject of my multiple sensitivities came up. I named a few, whereupon she took over.
“And you’re also sensitive to this, this, and that?” she said. “And you have paradoxical reactions to these painkillers, those mood-enhancers, these anti-nausea drugs?”
Yes, yes, and yes! How did she know?
“CYP2D6,” she announced. “You’re an ultra-rapid metabolizer.”
While I was still trying to turn this into English, she began a rapid-fire technical explanation of the glories of Cytochrome P450 2D6, to give it its formal name. CYP2D6 is, it turns out, an enzyme that one of our more idiosyncratic genes produces. Its job is to metabolize, i.e. break down and then get rid of, stuff the body doesn’t recognize as normal—mostly by changing it chemically into something else. And for reasons yet unclear, it comes in five varieties. And if you receive the ultra-rapid flavor, known officially as CYP2D6 Multiple, when certain foreign chemicals (i.e. drugs, added sweeteners, and so on) are introduced into your body Strange Things Happen. Chemicals get whisked out of the body before they can do their job. Or worse, they turn into different chemicals that Do Not Do What You Want Done.
In fact, usually quite the opposite. The calmer-downers become stirrer-uppers. The painkillers become pain-encouragers. The heartbeat-slowers become… you get the idea. Or, in the unlikely event that the drug actually sticks around long enough to do its job, your body is highly likely to say Yuck! Get this out of here! and produce an allergic reaction.
Not to mention that the results of the too-rapid metabolism can be deadly.
“Codeine, for instance,” said Dr. Shari. “I bet it gives you hallucinations, DTs, right?”
“Yes, it sure does,” I said. “But how come you know all this?”
“Because I have the exact same set of weird reactions you do, Pat. I’m an ultra-rapid metabolizer. And after playing chemical Russian Roulette most of my life, I woke up one day and realized that geneticists and biochemists now know a lot more about what foreign chemicals do in the body than they used to. So I did a bunch of research and found out about this little gene-child and its five forms. Ultra-rapids are quite rare—this isn’t one of the most popular choices, thank heavens
“So, codeine. Codeine is a gentle painkiller and sleep aid for most folks. For you and me, though, it can be lethal. That’s because codeine metabolizes into morphine in our bodies. Not a problem if you’re a normal metabolizer, because the codeine changes into morphine at about the same rate your body is flushing the morphine out. But if you or I take some codeine, whoosh! Instant morphine, piling up faster than the body can get rid of it. And that can make you hallucinate—or kill you.”
Being me, I of course went home and did my own research. Rare it may be, this ultra-fast gene-child, but not all that rare. There’s lots of information about it, including a list of the 76 classes of chemicals affected and their multitudinous drug names, and what the effects are likely to be for us super-speedy folks. Just about everything Better Living Through Chemistry is supposed to do for you, I discovered, won’t work for me. Or will work all too well, but in the opposite direction. And/or will probably be violently rejected by my body.
Oh, lovely. I wonder how I made it this far, was my first thought.
And my second thought was, But this is lovely. Now I have a roadmap. Now I can actually tell the medical folks what not to give me under any circumstances. And if something’s not on that comprehensive list, it’s unlikely to do me harm, and may even work!
And my third thought was, You know what, Pat? Without this particular version of this particular gene-child, you would not have made it this far.
Here’s why. In August 2016 I had developed a severe infection in one of the salivary glands just under the jaw. For some strange reason I tend to avoid hospitals, but thanks to a Grace-inspired plot between my acupuncturist and my wife I ended up in the emergency room anyway. I had been unable to eat and in extreme pain for several days by this time, and gratefully accepted the non-codeine-laced painkiller they found for me.
“This’ll make you drowsy,” they warned me. It did actually help with the pain, but (of course) rather than rendering me docile and sleepy, it put all my systems on full alert.
The ER folks took some blood and did some scans; by now it was close to midnight. Just after Beth left for the restroom, a young doc appeared. I asked what they intended to do, assuming they would give me an antibiotic and ready to tell them which antibiotics weren’t safe or effective.
“Well, that gland will have to come out, of course,” he announced. “And since this is probably coming from your sinuses, we’re also going to ream out your sinuses and nasal passages and fix that deviated nasal septum. Here, just sign this surgical release form right here and we’ll get you all fixed up.”
Imagine his surprise when instead of murmuring vaguely, “Sure, sure, doc, anything you say,” and signing on the dotted line, I turned into my own advocate. I said firmly, “Hold on a minute, Doctor X. I know there hasn’t been time to get the labs back or really have those scans read. And you haven’t even tried an antibiotic. Also, you need to know that a close relative of mine with the same nasal structure nearly bled out after that same surgery. So no, you are not going to do either of those things. Either admit me and administer an antibiotic I can tolerate, or I’m signing out of here.”
Beth, coming back at that moment, backed me up, and he meekly agreed to admit me and try the less invasive course first. Had I been in the expected opioid-induced haze, I might quite possibly have signed my life away then and there. Lifesaving moment number one.
It turned out the danger wasn’t restricted to the excessive-bleeding issue. When the scan results finally did come back, the hospital staff didn’t share them with me, but my own doctor did some show-and-tell later. At the time of the scans, he pointed out, that immensely swollen salivary gland had been within a hair of bursting and turning my entire body septic; in the several untreated hours between check-in and getting on the surgical schedule, I most likely would have succumbed to general septicemia. Lovely thought. Definitely lifesaving, that paradoxical alertness.
And then there was the middle-of-the-night encounter a few days later. I had not slept since entering the hospital, of course, given that I was on heavy intravenous doses of both antibiotic and painkiller. So when a nurse came in at four a.m. and began fiddling with my IV port, I knew very well it wasn’t time for either of my scheduled doses.
“What have you got there?” I asked, making her jump; she had thought I was sleep.
“Oh, just a blood-thinner. It’s to make sure you don’t get blood clots.”
“Stop right there,” I commanded. “Warfarin?”
“Well, yes,” she admitted.
“You need to know that I have to take Vitamin K because my blood already doesn’t clot very well on its own. Give me Warfarin and I’ll most likely have a hemorrhagic stroke. Write that in my chart right now, please. Go ahead, I’ll watch you type it in.”
I knew very well what had happened. Some doctor—my own was on vacation in Alaska at the time, so I got potluck—some doctor had seen that I was a 74-year-old woman, and knowing some older women develop blood clots when restricted to bed rest, had decided rat poison was the very thing for me.
The nurse finished typing and then came back with another vial.
“And what is this?” I quite naturally inquired, since she obviously wasn’t going to tell me.
“Oh, this is just your flu shot.”
“What flu shot?”
“Oh, it’s just standard procedure.”
“I see. So, since this is August, and since this year’s flu season won’t even begin for two more months, just how do you know which strain to inoculate me against? Last year’s strain won’t be around this coming year, you know. They mutate. So you go back to the chart now and write down ‘Patient refused.’ Go ahead now.”
Had I not been wide awake—thank you, CYP2D6 Multiple!—well, I don’t even want to think about it. Lifesaving moment number two.
After that, they pretty much left me alone. On Day Three, after Beth had administered the most effective healing aid of all, a Journey process, my stubborn fever broke at once and I even got some sleep. Ahhhh.
I was almost cleared for departure when the third baby doc in three days arrived at my bedside.
“Your labs are looking good,” she said. “Except for one. Your TSH is off the charts. That means your thyroid is barely functioning at all.”
“So, what do you recommend I do?” Having known about this supposedly under-functioning thyroid since the age of six—and having led, as many of my readers will attest, a very (okay, sometimes frenetically) active life anyway—I was intrigued to know which of the ineffective thyroid supplements she would recommend.
“Oh, we’ll take it out,” she announced. “You’re better off without it. I’m going to make an appointment for you with an endocrinologist for next week, but I’m sure that’s what he’ll recommend.”
“Not happening,” I said. “You don’t know me, but I know me. Write down ‘Patient refused surgery.’ Thank you.” What I actually wanted to say was, “So, if my brain was under-functioning, would you take it out? How about my stomach?” Not sure if that was lifesaving moment number three, but given my track record with surgery it’s a likely candidate.
So little CYP2D6 Multiple has saved my life at least twice. It has also restricted my use of pharmaceuticals, kept me off steroids and opioids and alcohol and street drugs, and forced me to eat very well indeed. Do I have issues with all that? Or can I admit that little Multiple, far from being an imp or demon sent to torture me by inches, is actually a rather irritating but nonetheless life-saving guardian angel?
Yes, little Multiple keeps hauling on my reins, apparently restricting my options—but if that’s to keep me from plunging off cliffs into death-dealing canyons, I’ll accept its services with thanks.
Here’s to you, CYP2D6 Multiple! Curse I may have thought you, little gene-child, but a blessing is what you truly are. May you always tap me on the shoulder—or in the adrenals—when I need to wake up, and post danger signs in my body when I’m straying off-track. Grace shows up everywhere… right down to the microscopic level and beyond.
P.S. Conversation between me and my massage therapist:
Donna: “So, your hospital is what they call a teaching hospital, right?”
Donna: “So, the more people they refer for surgery, the more practice the baby surgeons get. And since surgeons are the upper crust at the hospital…”
Pat: “... everyone refers people for surgery whenever possible. Oh dear. You really think so?”
Donna: “Well, what else would explain their eagerness to get you under the knife when they didn’t even have test results back?”
Bottom line: I really do see why it’s important to have an advocate along on any hospital visit. Unless, of course, you too have a dear little CYP2D6 Multiple keeping you wide awake no matter how many drowsy pills they give you!