roller coaster riding in '07 with new symptoms, strange maladies and an ever-growing list of specialists;
I got stronger and healthier in 2008 and along the way I shed my patient identity.
What is in store for me in 2009?
I had my 6-month CLL appointment with Dr. B today. I was not afraid; I had no misgivings about what the labs would show: since mid-2008, I have felt stronger and more energetic overall with the exception of a couple of nasty infections and a transitory fatigue this winter. I requested an ad hoc blood draw during the 6-month period between appointments when I began feeling fatigued and breathless and it lasted for several days: I was concerned the AIHA was returning but in fact my labs were fine.
Today, my labs were 'perfect' again and this is cause for celebration. The first defense against the AIHA was high-dose prednisone but in some cases, the AIHA is refractory to the pred and rituxin is brought in to finish the job. I was fortunate; the pred worked for me and the AIHA has not relapsed in two years.
With the news today, I do not need to return to Dr. B for a year. This is wonderful news after nearly three years in which I went from weekly blood draws and appointments that were slowly decreased to monthly. Then every other month, every 3 months, every 6 months.
But we still have unanswered questions and sometimes the CLL diagnosis seems a bit of a moving target and we wonder if:
- Is the CLL really in remission?
- Was the original bone marrow biopsy a clonal aberation that will never cause any difficulty ---- was it a "pre-cancerous" clone discovered through refined methods of early detection and because the initial questions of why my red blood cells were being prematurely killed off was not answered until the bone marrow biopsy showed that 'small clonal population of B cells'.
- Is the CLL lying low, hiding out somewhere in the deep dark depths undetected by instruments?
- Rare, spontaneous remissions have been noted in the literature and seem to occur in 1% of CLL cases, usually in Stage 1 or 2 and often in the absence of any prior treatment.
But for now, we celebrate!
And I sing the praises of two of Dartmouth Hitchcock's finest and having them on my team === Dr. B and Dr. R.