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A Tale of Two Infections November - December 2019

Preliminary Diagnosis: Squamous Cell Carcinoma
I was crest-fallen when my internist quickly labeled a sore in the ‘basin’ of my outer ear as a squamous cell carcinoma when we returned from Europe in early September. The previous year, a little sore on my jawline surprised everyone by being a basal cell carcinoma.

Last year, my Portland dermatologist was unsuccessful in completely removing this, my first skin cancer, and after it had healed, I was subjected to a much larger wound to cut-out its remnants in a Mohs procedure. With her permission, I had postponed this second procedure until we were in the Southern California desert where we would park our trailer for months. We are in the desert longer than we are at home, so we are increasingly receiving more of our medical care there.
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Ear lesion on September 26th.

That was the plan with Tumor #2, to wait until our arrival in the desert in early December to have it removed. Being diagnosed with 2 skin cancers in a year didn’t bode well; I worried that my age-related, immune-compromised state was catching up with me. I also wondered if the increased sun exposure from largely living outdoors for the last 20 years as cyclotourists, and then hikers, was the cause. I’d been as meticulous as I could be in using high SPF sunscreens with excellent UVA protection and fully covering with high UPF clothing. I was feeling doomed for a succession of future skin cancers. And how in the world was I supposed to spot them inside my ear? And why hadn’t my skin check by the dermatologist 6 months ago afforded me more protection?

By the end of October, the lesion had grown and was fitting one of the classic skin cancer descriptions of ‘a sore that doesn’t heal’. It was painful, bled a bit, and it oozed several times a day. We both became increasingly alarmed, believing it was much more serious than initially thought. I made successive phone calls to the busy desert dermatologist’s office in hopes of being seen earlier. I didn’t want to sacrifice our backpacking trip in the Grand Canyon or our planned dinner with friends while there, but I also didn’t want to take undo risks. Appointments early in the week were more prized because the dermatologist did Mohs procedures on Thursdays, so being see on a Friday could mean a week delay in tumor removal.

The lesion was becoming increasingly painful, adding to our respective worries. Bill began talking about the dermatologist ordering an MRI to check for invasiveness and I began wondering how much of that thin area of my outer ear would remain after a significant surgery. My highest priority was to be able to sleep on that side after a reconstruction since my apnea-like issues prevent me from sleeping on my back—that mattered to me more than how I looked.

A Cold
About a month after receiving the preliminary skin cancer diagnosis, on October 12th, 2 days before our second big event of hiking between the south and north rims of the Grand Canyon, I came down with a cold. My stubborn side prevailed and I hiked the 46 miles in 2 days with a big stash of tissues in my pack. I rarely get colds and this one went on and on. Bill suggested that I might have a sinus infection though neither of us had had any experience with them and we were uncertain.

Two weeks into this persistent cold, I was hit hard and fast by a severe hay fever attack while hiking out of the Grand Canyon on our first ultra-light backpacking trip. The allergies haunted me for about a week but when they subsided, I still had the cold and now another sore throat. I decided that I’d have to seek professional help for the persistent sore throat but didn’t know with whom or when.
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On Halloween, 5 weeks later.

Skyrocketing Pain
Against this backdrop of a persistent cold, a sore throat, hay fever, and suppressed hysteria about my worrisome left ear lesion, I kept calling to secure an earlier, cancelled appointment slot with the dermatologist. I’d already advanced it from December 2 to November 15 but I wanted to be seen sooner.

Out of nowhere, the pain in my outer ear went through the roof during a hike while in the mountains above Palm Springs. Inexplicably, the earlobe ballooned and seared. My gut was upset from my latest antihypertensive medication and suddenly the extra weight of my 20 pound training load on my back was overwhelming. I could barely hold myself together. It was a social hike with 3 others, so I put on my happy face as best I could but chimed in when someone suggested turning around early for a 10 mile, not 13 mile, hike.

Once off of the trail, I pressed hard for an appointment for the next day and was ecstatic when it was unexpectedly granted. That could mean pain relief 48 hours earlier and the Wednesday appointment would give me a shot at a Mohs removal procedure the following day. I changed our RV park reservations so we could arrive at our next destination, in Banning, on a Wednesday instead of a Friday for the following week for the same reason. Saving my ear became the primary objective for organizing our calendar, with still hoping to squeeze in 40 miles of hiking a week.

I had been putting antibiotics on my earring post off and on for about 10 days and decided that the minor skin infection had gotten out of control and that was why my ear lobe had suddenly enlarged. I’d also been putting a lidocaine cream on the back of my ear to sooth the pain. The lesion inside the ear hurt but Bill advised me not to put anything on the open wound; I reasoned that a little numbing on the back side might dull the pain a bit on the inside.

I had hours of horrible, writhing pain in bed that night, Tuesday, after the hike. I used a gel ice pack on my pillow for about an hour; it did’t help, but it gave me something with which to fiddle.
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Two weeks later, Barb & her ear were a mess!

A New Diagnosis
Wednesday, we made the 75 minute drive out of the mountains at Idyllwild to the desert for the dermatology appointment in Rancho Mirage. Always running late and in a hurry, she quickly decided that I had impetigo, a bacterial infection due to staph or strep.

Bill’s subsequent research indicated it was actually ecthyma, or deep impetigo. It had advanced into the neck lymph nodes and was technically a cellulitis. Because it was now invasive, it was a potentially life threatening infection. Mine wasn’t expected to progress because of the aggressive treatment, but that extra detail did put it in perspective. In addition, the dermatologist believed that I also had allergic reactions to the topical antibiotic and/or lidocaine I’d been using. “Stop using it all” she boomed. I already had a day or 2 before.

I started using the oral and topical antibiotics in the desert pharmacy parking lot that Wednesday. I didn’t “qualify” for the much anticipated Mohs procedure the next day to remove the cancer—it was too dangerous given the raging infection.

We were stunned that I had a serious infection and that the dermatologist was very casual about the possibility of a carcinoma. Our life or death drama about my ear lesion was a shoulder shrug to her. It was my Portland internist who thought it was cancer. The dermatologist said it could be cancer or an actinic keratosis, which are benign little rough patches.

We were reeling! Perhaps no cancer at all, despite our angst, and maybe simply a smoldering, garden-variety bug? Either way, the dermatologist considered it too risky to biopsy the original lesion inside the ear until the infection cleared. She didn’t want to chance it getting into the business part of my ear.

Win Some, Lose Some
The intermittent pain around my ear continued to be fierce. I used some of Bill’s leftover codeine and the gel pack that night and the next with zero benefit. The third night, I opted to set-up an exercise slot with a blanket on our trailer floor rather than go to bed. I reasoned that if I engaged in some predictably painful but therapeutic myofascial release on my quads while the ear pain was at its worst, that the pain would register more broadly in my body and be less maddening. It didn’t work—the brain-scrambling pain was too intense—I couldn’t make the simple and almost daily maneuver of getting the massage ball between my front thigh muscles and the floor. I just couldn’t organize the familiar movements that normally required about 5 seconds. After this more than 2 hour-long pain episode subsided, I crawled into bed for a restless night.

About 24 hours after starting the antibiotics, the month-old, nasty and copious congestion in my nose or sinuses was about over and at 48 hours, the persistent sore throat was GONE. Clearly, I’d had bacterial infections in my nose and throat for a month. We first noticed the lesion in my ear in late August, so I’d probably been actively infected in my ear for months! That also helped explain why I had felt under the weather since our return from Europe in early September; I had felt like I never got over jet lag.

And Another Diagnosis
After the 3rd night of hours of sleeplessness due to writhing pain, I called the dermatology office when they opened at 8 on Friday morning, 2 days after being seen. I wanted a prescription for pain meds, something I’d never requested. Given it was Friday, the prospect of no access to pain relief until Monday was too much to bare.
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Too painful to touch.

Her office wouldn’t prescribe pain medication without seeing me in person but they would see me at 10. I hadn’t finished my exercises or started breakfast, but together we hustled me out to the truck in time to make it. I ate my enormous pork patty and scrambled egg breakfast while driving down the mountain.

I was seen by the dermatologist herself, not the medical assistant with whom the urgent appointment was booked. She quickly decided that I had shingles on top of my bacterial infection and allergic reactions! It wasn’t a total surprise to us because both Bill and I knew that this kind of pain was associated with shingles and little else, but it seemed so unlikely. I’d had both of the 2 vaccinations of the new Shingrex product that is more than 90% effective in preventing shingles over a year ago, and the older version years before that. And darn it anyway: I’d had a terrible hypotensive reaction to the 2nd vaccine AND now I had shingles. Bill reassured me it was not for naught; the vaccine should be softening my current case of shingles.

The dermatologist made the shingles diagnosis based on the pain being shooting pain and only on one side. I had none of the characteristic vesicles to support her conclusion but I was immensely grateful that she elected to treat it as such instead of taking the more usual approach of “Let’s wait and see.” She believed that by hitting it early and hard with antivirals, that the pain would subside that night or the next morning. I left her office without anything specifically for the pain.

Unfortunately, my pain persisted longer than predicted, with last event being at the end of the following day but at least after 4 tortured nights, I was able to sleep. Bill subsequently read that I was at risk of developing deafness from this shingles infection. I later understood that it was shingles, not the bacterial infection, that had caused the crippling pain on the hike earlier in the week.

So there I sat, flirting with the risk of dying from a common bacterial infection and being deaf in one ear when we had fretted about cancer, though it could still also be cancer. Crazy! And what a protracted drama for seemingly simple territory like an outer ear.

Good News
From my more informed perspective, I reflected on the good news:
..The antiviral specific for shingles gave an encouraging bit of relief within 3 hours of taking the first tablet. The next pain wave hit an hour later in all of the usual places for a doozy, but didn’t reach peak amplitude.
..An hour after that, I said “I suddenly feel better.”
..Bill then looked at my outer ear and commented that some of the horribly damaged skin was starting to peel after 2 days on antibiotics.
..After having peered at the lesion for months, Bill was leaning towards the dermatologist’s hunch that there was no cancer at all and perhaps, not even an actinic keratosis. He was entertaining the possibility that what had annoyed me in late August was only a bacterial infection.
..There was a chance that the entire drama would be completely over by the time of my appointment a week later: I would have finished the oral antibiotics and anti-shingles drug by then.
..The possibility of sleeping comfortably at night was on the horizon.
..Maybe the malaise, the tiredness, the lack of ‘oomph’ that had plagued me for 2 months would be gone. Damn it! The problem may have been that I’d been SICK!
..Bill held out hope that the nasty GI troubles with my antihypertensive medications were actually caused or amplified by these infections. (There however seemed no way to support that my high blood pressure I would improve.)

“Come back in 3 months but call me if it gets worse” was the dermatologist’s decree when she whizzed through my exam room a week later. The lesion now looked about like it had in September when the internist saw it and the dermatologist currently had little concern that it was cancerous.

“Bad swab” was her explanation when I pressed for the culture report that was negative. Functionally, it didn’t matter whether it had been staph or strep because the treatment had knocked it out. But, ever mindful of the need for patients, especially aging patients, to fortify their credibility in the doctor’s office, I had wanted to know. Responding to a future query with “It wasn’t determined” would be heard as “The patient forgot/never knew.” Sigh. And in this era when a patient’s air time in medical appointments is measured in seconds, there would be no space for elaboration.

The following night, I was able to sleep on that ear and the next night, I was able to use silicon earplugs again to blunt the noisy parade of slow moving trains on the nearby Banning tracks. I always forget: we are on the main rail route to LA when there.

During the saga of these 2 infections, I’d had a sudden and severe hay fever attack while on our first backpacking trip to the bottom of the Grand Canyon. Upon returning to our trailer on the South Rim, I was able to knock it down with generic Flonase from our traveler’s stash of medicinals, a product I’d only used once before. That incident had me rethinking the items in my emergency kit when isolated, like when backpacking. We already had carried Epipens for years on the off chance that one of us had a first, rapidly fatal, anaphylactic reaction to a new allergen. Despite the extra, unwelcome bit of weight it would add to my minimalist pack, glass-bottled Flonase was now on my list of essentials. It wasn’t a life-or-death antidote like the epinephrine, but it ranked high on my personal, misery-intervention scale.

Now, after this considerable recent pain, I also wanted to include my miracle antimicrobials to my stash: the antibiotic Keflex and the anti-shingles drug Valacyclovir. Should the need for either of these products arise when we were in a remote location at home or abroad, I wanted to be poised to immediately self-treat.

When backpacking, I could carry a mere 10 tablets, which would be enough to treat both types of infections for 48 hours for 1 of us. That would be enough to literally get me out of the woods and also speed the diagnostic process: if the drug worked, I would continue the standard treatment course. Presumably, I’d only take one of the 2 drugs and it wouldn’t be hard to select the correct one based on my vivid experiences with the symptoms.

Having a stash of prescription drugs like these isn’t supported by primary care physicians but we had a possible Plan B. The border town, Algodonas, Mexico, with its many pharmacies staffed with English-speakers, was only a few hours drive from Palm Springs. And I was in luck: an 800 number phone call reassured me that both drugs were available to me there without a prescription. The antibiotic was a mere $10 for 100 tablets and I’d only taken 20 to treat my raging impetigo infection. The antiviral was pricey at $60 for 30 caplets. That was enough to treat 2 bouts of shingles or 1 episode and 2 “Let’s see if it’s shingles” experiments. Both products were at bargain prices by my new pain standards.

Peace was mine once again: I was healing; I likely did not have a second skin cancer; I would be able to self-treat or self-diagnose if in a pinch with these skin or respiratory infections in the future; and my new plan to always see my Portland dermatologist when we returned from Europe in September would speed the proper diagnosis of my seemingly more frequent, serious, skin problems. I was delighted to have a comprehensive plan to restore that all-important illusion of control.

Ah, were it so simple. About a month after finishing the last of my antimicrobials, I had an episode of sleep-disrupting pain. It wasn’t the writhing pain I’d endured, but it robbed me of sleep nonetheless. I had a milder bout of painful wakefulness the next night and began to panic.

Online reading was frightening. I likely had “postherpetic neuralgia”. It’s a nasty, post-shingles complication that, at its worst, can cause severe, life-long pain. I wasn’t pleased. I was also disturbed because a little, rough, nodule remained at the junction of my earlobe and neck, right where the infections and allergic reactions had raged.

I made another squeezed-in trip to the dermatologist’s office just before they closed for Christmas. The cheery assistant suggested that the bump was likely a “no big deal” cyst that probably was now a permanent feature to be ignored. She offered several treatments for the pain. One was a capsaicin (pepper) topical that my insurance refused to cover, leaving me with a $180 personal-pay price. The kindly pharmacist recommended the $18 over the counter product that was four times stronger. The assistant also offered a maintenance drug, gabapentin, which I declined. A week later, the FDA issued a warning about this drug causing breathing problems, particularly in the elderly (which I have to remember, includes me.)

Still smiling and seemingly unconcerned, the assistant tossed out the option of taking another round of the antiviral drug. My recollection was that it shouldn’t be effective at this late date but she made no comment about that. She’d only go as far as to say it would cause no harm. I accepted the offer of a refill prescription. It had caused GI upset with each of the 3 daily doses, but it was tolerable. I was desperate for a fix and the sensations around my ear and in my neck had seemed like mild shingles to me.

It was off to the pharmacy for a surprising prescription of a 10 day course of treatment instead of the 5 days like the first course. Later, I discovered that my bottle only contained 14 of the 30 tablets. I was relieved that the pharmacist didn’t quibble with my claim. No doubt he figured out like I had that 30 tablets would not have fit in that little bottle. It only cost me drive time, but the trip in holiday traffic added to the persistent, unanswered question of “Why is this so hard?”

There was nothing to do but wait: wait to see if the anti-shingles drug did its magic a second time; wait to see if it was residual infection and not postherpetic neuralgia that was disturbing my peace; and wait to see if postherpetic neuralgia would be a lifelong companion or not.