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Birds In Spring: Turning Simple Into Difficult
By: Lou Ganim; Published: May 17, 2012 @ 12:37 pm | Comments Disabled
I thought I’d tell a little story related to an aspergillus fungal infection that beset me before my first stem cell transplant.
What I’m going to recount here has less to do with the fungal infection than it is a cautionary tale.
In a dark way, this story can be somewhat amusing, but the absurdity only gets humorous in the retelling, not in the actual experience.
The aspergillus came along with something called bronchiolitis obliterans with organizing pneumonia, or BOOP. That there’s even an illness that’s called BOOP is kind of funny in itself.
On one evening back in 2006 when I was on my second cycle of Velcade [1] (bortezomib), Doxil [2] (doxoburicin liposomal), and dexamethasone [3] (Decadron), known as VDD, I was heading for the shower and noticed these odd rings on my chest. They looked like what you’d find on a wood table if someone set a wet glass down on it for too long.
“Now what?” I thought. During chemotherapy, of course, that’s not an unusual question. We all know that treatment drugs bring along side effects.
So, I called out to my wife, Linda., I pointed to these rings and muttered something like, “What the heck is this?”
After checking them out, she said, “Looks like ringworm.”
Great.
The next day I had an appointment scheduled with my nephrologist who was keeping a watch on my recovering kidneys after multiple myeloma had “insulted” them, as my doctor at Memorial Sloan-Kettering (MSK) had put it.
On the way, I dropped into my local oncologist’s office and asked if one of the nurses could take a moment to check out my rings.
After a bit, a nurse called me out of the waiting room and into a hallway and said, “So what’s up?”
Since she seemed to have no intention of putting me in an exam room, I pulled up my shirt and showed her. In the hallway.
She looked the rings over and said, “Yep, looks like ringworm.”
And that’s it. Nothing more.
To break the deafening silence, I finally asked, “Well, what do we do about it?”
Apparently there was no “we” in what was to be done.
“You need to see your primary care physician,” she said.
I was in a doctor’s office – oncology-hematology practice aside – shouldn’t they know what to do about ringworm?
I reminded her that I was between primary care doctors, given that the last one failed to figure out what was wrong with me (actually, failed to even try), while my condition deteriorated over several months with rampant myeloma plasma cells spreading uncontrollably through my bone marrow.
I’d ended up as an emergency admission to Sloan’s Memorial Hospital for almost two weeks, and I really hadn’t had time to look for a new primary care doctor. And I certainly wasn’t going back to the last one.
Getting a new primary care physician wasn’t a priority, since I was a bit busy trying to stay alive.
Actually, I just thought all that. What I said was, “I don’t have a primary care physician.”
I don’t recall how the remainder of the conversation went. except that it was exasperating and went nowhere. I remember her turning around and walking away down the hall, leaving me without a solution to my ringworm.
This was my first hint that perhaps this overly big oncology practice might have lost touch a bit with its patients.
On to the nephrologist.
Toward the end of my appointment, I said to him, “I apparently have ringworm. Got any ideas?” Now, don’t take this the wrong way, because my kidney doctor is wonderful. But with the ringworm question, he simply gave me a look that said, “Hey, I treat kidneys.” He was sympathetic, but admitted he really wouldn’t be the right person to address a fungal infection of the skin.
Out in the parking lot, I called my MSK doctor’s office and got on with one of the nurses. She was great. She was understanding. But she said, “I’m not there.” She was reluctant to diagnose and treat something like this over the phone. I was reluctant to drive 150 miles to see her.
We hung up. I called my local oncologist and got on the line with a different nurse. She was more alert to the problem and told me to come by the office again. She sounded perplexed about why I was sent away without a solution earlier. She took another look at my rings. Another, yep, it’s ringworm. She told me to go to the drug store, buy an antifungal cream, and apply it until the ringworm went away. I did, and eventually, several weeks later, it went away.
With the benefit of hindsight, we probably all should have been a bit more alarmed about the ringworm attack.
My excuse is that at the time this happened, I was brand-new to this whole cancer treatment thing, not to mention being caught in the whirlwind at the time of having just gotten my diagnosis.
In my initial VDD treatment, among the drugs I was taking prophylactically was an antifungal medication. Obviously, in retrospect, it wasn’t working, because there I was presenting with an incipient fungal infection of the skin.
Perhaps if we’d all been paying more attention, we might have changed to another antifungal drug. Maybe we’d have avoided the aspergillus that invaded my lungs a few months later and the BOOP that accompanied it, causing considerable chaos on the eve of my first transplant, delaying it by about four months.
Just a little note about aspergillus: It’s a common fungus, often found in decaying vegetation (those dead leaves and maybe the compost pile in your backyard, for example), and it rarely affects people with normal immune systems. It usually responds to treatment. Sometimes, it doesn’t, and, well, then it’s just one more complication from which myeloma can bring about one’s demise.
Lou Ganim is a multiple myeloma patient and columnist at The Myeloma Beacon.
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URL to article: https://myelomabeacon.org/headline/2012/05/17/birds-in-spring-turning-simple-into-difficult/
URLs in this post:
[1] Velcade: https://myelomabeacon.org/resources/2008/10/15/velcade/
[2] Doxil: https://myelomabeacon.org/resources/2008/10/15/doxil/
[3] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
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