CONFIDENCE IS NOT DENIAL

M a c r o g l o b u l I n e m I a —

If I try, I can spell it but forget even attempting to pronounce it. The pathologist’s report from the bone marrow biopsy said lymphoplasmacytoid lymphoma, as if that were any easier to wrap your mind around, either cognitively, emotionally or linguistically.

But would you believe I was relieved by the diagnosis when it came in mid-December 2000. My wife (she is an oncology-certified RN) and I had thought from the symptoms I was experiencing and from the mysterious "protein" the internist kept talking about that I had multiple myeloma. I have been a pastor for nearly forty years so I’ve experienced what MM can do to both patient and family.

Although relieved, I was surprised, as was my oncologist because the IgM level was so low (less than 500). Nonetheless the "vasculitis" on my feet and ankles, my fatigue and the very painful peripheral neuropathy all indicated the bone marrow biopsy was necessary.

With so recent a diagnosis, I am really a newcomer. My oncologist gave me the information about IWMF and my e-mail request brought the information packet right away. Wow, what a helpful library of information came in that envelope!

My membership enrollment and contribution went back by return mail. The huge list of others who are care-givers or who have WM let me know immediately that my experience, rare perhaps, was not unique and that there was mutual interest and support out there. My first e-mail to an address that I thought might be a "neighbor" (the phone number gave me a hint) did not bring a response.

So I phoned the guy who headed the nearest chapter for WM support, even though the gatherings are about 4-5 hours away by car. He put me in touch with someone a lot closer and the phone conversation with this nearer "neighbor" was really empowering.

After just three months post diagnosis and just beginning in treatment, I am beginning to recognize that I am emerging from denial (as they say in the recovery movement — it is not just a river in Egypt) and am beginning to look seriously for information about WM and support from others with my experience.

My oncologist is somewhat knowledgeable since he has had another WM patient under his care for several years.

The peripheral neuropathy and fatigue I am experiencing are giving me the option of an early retirement in a few months, at age 61. I have located another hematologist/oncologist in the city near where we will live in retirement who is currently caring for six WM patients. I’ll be his seventh.

I am looking forward to the future. I don’t think that confidence is denial. I think is has to do with the faith I have experienced and proclaimed all my adult life.

Ronald G. Payne

Troy, Ohio