Almost three weeks after my PET scans and MRIs and many many days of playing telephone tag with my oncologist in Richmond, I finally looked at my online health portal - my scans are all clear. Phew. Of course, I realized - intellectually - that bad news would have been transmitted swiftly, follow ups would have been quickly vetted and put into place, and a personal call to deliver bad news would certainly have preceded posting bad results online but ... - emotionally - I was not so sure. Logging onto my portal seemed risky. A very bad idea. Seeing bad news in print without the support of a physician would have been a blow so ... I avoided it until this morning when I let my head and my logic win the day. All clear. Okay. Breathe out. Move on. Nice to get a confirmation that lack of outside symptoms matches lack of evidence of lurking lymphoma sneaking back into my bones, my orbits, my nodes. Relief.....
That emotion of relief is countered somewhat by another piece of health news delivered that Monday morning in Richmond. While I will share more news as this upcoming path becomes clearer, my oncologist's keen listening to my regular mantra of "I get horrible colds; I can't shake them for up to 6-8 weeks; it can end in bronchitis or pneumonia" resulted in him running an immunoglobulin panel in my blood work. This test had never been run on me before and revealed that ... I really don't have any immunoglobulin. Barely perceptible numbers. We're talking single digits. After getting those blood results, he called me at 7 pm and left a message to call his cell phone. Ummmm.... while he sounded completely calm and upbeat, NO ONE wants to have an oncologist call at night and ask you to call back on his cell. No cancer news; just news that I seem to have negligible traces of IgG, IgA, and IgM. He already had scheduled a referral to an immunologist at VCU.
In following up with the VCU immunologist and confirming these blood results in another test, a diagnosis of Common Variable Immune Deficiency ( CVID ) appears likely. Treatment? Think diabetes management but rather than daily insulin infections, CVID can be managed with monthly or biweekly subcutaneous infusions. The CVID explains a lot. Not only does it shed light on my weak immune system, it is consistent with my shingles, my thyroid autoimmune mysteries, and even my lymphoma. The BEST news that emerges from this fresh information is that CVID makes the lymphatic system very active and that my stage 4 designation might have been overstated. CVID "lights up a PET like a Christmas tree", just like stage 4 lymphoma. CVID can "overlay" with lymphoma.So, now that stage 4 designation feels less likely. I remember the difficulty in harvesting a lymph node. I recall the clear bone marrow biopsy despite the stage 4 designation. And then ... I cringe when thinking how CLOSE I was to an allo Bone Marrow Transplant with its 25% mortality rate. Oh my.
Medicine = art and science. We are still in a nascent era of medical discovery and treatment.
Time to find care up here in the DC area. It looks like I will be searching for a CVID specialist.
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