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From Lyme to Lymphomato Limbo-A Medical Diagnostic dyssey

Rosenthal, Eric T.

doi: 10.1097/01.COT.0000290862.02942.21
Department: Advocasy Insight

Modern medicine can sure be amazing at times. Combine multidisciplinary medical expertise with state-of-the-art technology and diagnostic testing and after nearly six weeks of a debilitating illness you too may learn how healthy you really are.

This medical saga began in mid-April almost immediately following my return from an ASCO media briefing on prevention in New York City and started to end at the end of May three days prior to ASCO's 39th annual meeting, in Chicago.

I shared a glimpse of this medical journey with you in OT's June 10th issue, where I wrote about my experience as a hospital inpatient. At that time, I was two weeks into an unyielding fever, severe night sweats, chills, headaches, and aches throughout other parts of my body, leading to a preliminarily diagnosis of Lyme disease.

During my two-day hospital stay at a suburban-Philadelphia teaching hospital, I had a battery of blood tests, various medical consults, a chest x-ray and MRI and received three different antibiotics orally and intravenously. Despite the support-staff frustration I suffered, I emerged still undiagnosed, with Lyme disease dropped as suspect when the titer returned negative.

The next month my only outings were periodic visits to my internist, an infectious disease expert, hematologist/oncologist, and surgeon, as well as several hospital trips for more blood work.

These diagnostic workups yielded a new proposed diagnosis of lymphoma, eventually resulting in a lymph-node biopsy on the back of my neck—further incapacitating me for more than a week post-surgery—four CAT scans and a bone-marrow aspiration and biopsy.

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Growing Weaker

During all this time my fever, night sweats, and chills wouldn't abate, I continued to grow weaker each day, and my legs began aching so much I was unable to sit, stand, or walk unattended for several weeks. My now-no-longer-possible seven-mile daily runs had taken far less effort than it currently required for me to get out of bed, and it was nearly impossible for me to find a comfortable position while sleeping.

Bedridden and immobile and not sure what I was facing, I mentally and emotionally put my life on hold—trying not to speculate about my prognosis or to think about all I had to do as a self-employed writer with all the other daily responsibilities of a middle-aged, middle-class husband and father.

My ad hoc medical team was perplexed. The internist had originally diagnosed Lyme disease; the urologist attributed my condition to prostatitis and epididymitis; the infectious disease expert suspected some rare viral infection; and the hematologist/oncologist seemed convinced I had lymphoma before my lymph-node biopsy or bone-marrow aspiration and biopsy.

The surgeon had enough sense not to do any diagnosing and merely complied with the hematologist/oncologist's directions to perform the lymph-node biopsy, which fortunately proved negative, as did the bone-marrow aspiration performed by another oncologist.

As diagnostic test after test came back, I learned of all the diseases I did not have. I was still as sick as I had ever been, but nothing could confirm a condition with a name. For five-and-a-half weeks, my symptoms grew worse every day, and my physicians did not know if my anemia, high blood-sedimentation rate, and other symptoms were cause or effect.

Figure. E

Figure. E

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Goal: Attend ASCO Meeting

I had a goal, however. I was determined not to miss the ASCO meeting in Chicago (May 31-June 3), which would be the 15th consecutive year I had attended. Having already canceled my attendance as a speaker at ONS's Congress at the beginning of May, I refused to be unable to attend ASCO if it was at all medically possible.

Then, on Memorial Day (May 26), my fever broke. The following day, I began regaining a little strength—not realizing until then how enervating the continuous fever had been.

I also had finally concluded my antibiotic cycle, and was a week past my neck surgery so I could begin taking naproxen-sodium tablets to relieve my leg pain. I literally practiced sitting, so I might be able to use that position if I were well enough to be a passenger on a flight to Chicago.

I called my internist and told him of my improved condition. Three days prior to ASCO he told me that I could travel if I felt up to it. I was to leave on Friday, but I still had appointments with my surgeon and oncologist late on Thursday to assess the healing of my neck wound and learn of the results of the bone-marrow aspiration and biopsy from each in turn.

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Bone Marrow Aspiration Negative

However, my accommodating surgeon spilled the beans when I met with him first: The bone-marrow aspiration results were negative. When I met next with my oncologist, he confirmed that I did not have lymphoma.

He ordered more blood tests and said that part of my bone marrow had been cultured to determine if I had some other infection that the other tests had missed. He too told me I could travel, noting I was not yet out of the woods for another 28 days until all the cultures were concluded.

I left for the meeting, and the huge convention center would prove an appropriate venue for testing my ambulatory abilities.

Once at ASCO, I met with the production team from The Group Room radio show—which broadcast a live clinical show that Sunday followed by taping a special advocacy program that would air the following week—and checked in with the OT team to discuss potential stories.

But despite my journalistic agenda, I had a secondary mission—to see if any of the ASCO attendees I encountered were familiar with the medical odyssey I had just experienced and to make contact with the heads of the University of Pennsylvania Cancer Center and the Thomas Jefferson University Cancer Center in case I still was in need of future oncologic care.

As I related my medical story—not unlike an Ancient Mariner—I actually met two other men who claimed to have suffered similar episodes that did not yield a diagnosis. Even though noting several anecdotal aspects the three of us had in common, I decided not to play irresponsible epidemiologist and draw any tempting but invalid conclusions.

I stayed the entire five days of the meeting, but decided not to push my luck by attending a three-day advocacy meeting in Washington that immediately followed ASCO.

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‘Fever of Unknown Origin’

I still do not have a diagnosis other than “fever of unknown origin,” but I did spend at least three of the five-and-a-half weeks thinking I might have had lymphoma and feeling strange after the fact referring to “my” oncologist when I actually didn't have cancer. Of course, I could always switch to “my” hematologist, a subspecialist with a larger patient base that transcends cancer patients.

I hope I learned a little something during my illness—to be more patient, to be hopeful but realistic; to take one day at a time; and never to take one's health for granted.

Someone asked if I was scared because I didn't know the cause of my illness. I replied that I didn't have enough data at that time to be scared—and I wasn't.

Now, still trying to get back to full strength, I'm content to be healthy, even if I never know the cause of my illness. But I've got to admit I hope it never recurs—whatever it was or was not.

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Conference Listings on OT Web Site



Acomprehensive listing of oncology-related confer-ences and courses is available at Click on “Conferences,” and meetings can be viewed either by a running list or with a month-by-month calendar view. When available, hyperlinks to the organizations/events in-volved are also included.

© 2003 Lippincott Williams & Wilkins, Inc.
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