Strength and Health

It always takes me by surprise to realize that the people around me think I have health problems. In my mind, I am a strong, healthy person - and if a stranger were to ask me to describe myself, that is exactly what I would say. But in the twenty years of my adult life, I have had mononucleosis, severe eczema, two miscarriages, near-death from hemorrhage after childbirth, pneumonia twice, bronchitis, a serious corneal ulcer, strep throat, and three episodes of deep, prolonged, undiagnosed illness. And on top of all that, putting everything else in the shade - cancer. I never think of these experiences all together, and in most cases, I hardly think of them at all. They happened to me, and some of them have formed my physical and emotional scar tissue, but I don't think of them as who I am, fundamentally.

In early March this year I got sick, and I kept getting sick over and over again through the next two months. I had what felt like every symptom in the book: high fevers, chills, exhaustion, enlarged lymph nodes, muscle and joint pain, headaches, malaise, loss of appetite, dehydration, and on and on. Each time after about a week, my fever would resolve and I’d start to feel better, but then my immune system seemed to overcompensate - I would have an allergic reaction with terrible itching and painful joints. One day my feet suddenly swelled up so much I couldn’t wear shoes (I had to leave my office in flip-flops). Other days a knee or wrist would become so painful it was debilitating. And then in another week or so I’d get sick again.

My oncologist Sara was able to say with some certainty that I was not presenting a recurrence of my breast cancer - the symptoms were nothing alike. She referred me to an immunologist (a specialist in immune deficiency) and a rheumatologist (a specialist in autoimmunity). The immunologist, Dr. Gendelman, ran a full panel of blood tests, the results of which showed a completely normal level of immune system function. The rheumatologist, Dr. Gorn, also ran blood tests, some of which returned higher than normal results. He also ordered a PET/CT scan, mostly out of concern about my enlarged lymph nodes. Previously, they had been the least of my concerns, since they were the least debilitating of all of my symptoms. In addition, Sara had dismissed them as reactive (meaning that they were enlarged as a normal immune response to something else and not a problem in themselves). However, there was one in particular which had become very enlarged just prior to the onset of my first illness and which was still palpable three months later; Dr. Gorn clearly thought it was not reactive. 

So I had the PET/CT scan this past Tuesday. As a cancer patient, PET/CT is a normal part of post-treatment life (we even have a term for what it feels like waiting for the results - scanxiety). Because of that prior experience, I had already internalized the concept that there is only one good result: a clear scan. But this time, I did not have that result.

My lab report reads: “Increased size and number of numerous FDG avid enlarged thoracic and abdominopelvic lymph nodes as well as new splenomegaly with increased FDG avidity. Overall increased size and number of numerous intensely FDG avid enlarged bilateral cervical, supraclavicular, axillary, subpectoral, interpectoral, and left internal mammary lymph nodes. For example, 17 x 24 mm left axillary lymph node (3-33), previously 5 mm. Mildly prominent subcentimeter AP window lymph nodes. Prominent and enlarged retroperitoneal, bilateral common, internal, and external iliac, and inguinal lymph nodes with intense FDG activity, for example enlarged left external iliac lymph node measuring 13 x 25 mm (6-316). Increased size and FDG avidity (now greater than liver) of the spleen, now measuring 13 cm.”

In layman’s terms, this means that lymph nodes all over my body are going crazy, growing big and filled with frantically active cells. My spleen is also involved, which is not surprising since the spleen functions like the largest lymph node in the body. 

Why this is happening is less clear. According to my lab report, “Differential diagnosis is broad and includes benign lymphoproliferative processes, such as Castleman disease, or infectious, autoimmune, granulomatous, malignant lymphoproliferative, and less likely metastatic disease.” The latter is the worst possibility, as long-term survival of metastatic breast cancer is basically zero. Some of the other possibilities are not great either; “malignant lymphoproliferative” means lymphoma, which can be devastating, and Castleman disease is very similar to lymphoma and can be similarly deadly - although both are treatable. Infectious, autoimmune, or granulomatous disease may be what I should be hoping for - although they can be very serious too, and sometimes untreatable (or even undiagnosable). There are too many possibilities for me to really think through, and not enough information for my doctors to say which it is.

To get more information, Dr. Gorn has ordered an excisional biopsy, in which a surgeon, Dr. DiNome, will remove the enlarged lymph node in my left axilla (armpit) so that more testing can be performed. This is the same surgery that I had last summer (and twice before that, during my mastectomy in 2015 and for the first time in 2006). It’s not fun - it requires a few days to recover basic function and a few weeks for full recovery. However, that is a small price to pay to get more answers.

Even now, as I sit at my desk writing these words, I still feel like a strong, healthy person. It seems to be an intractable part of my identity, although it may be less and less grounded in fact. I have not forgotten the misery of my illness this spring, but I already feel far removed from it. It is almost inconceivable to me that my immune system is going haywire inside me at this very minute, but the scans don’t lie. All I can do is hope that my doctors will be able to figure this out, and that the strength and health that I feel in my soul will overcome the illness that is apparently in my body.