Grateful for Good News Even If It Involves a "But"

Not long ago I spoke with Dr. O'Connell at the Boston Medical Center.  Her report confirms what the hematologist suggested earlier this week: no organ involvement, but a plasma cell disorder that is amyloidosis.  

Given the toxicity of the chemotherapy, the team does not recommend any treatment at this time.  But I do have to have quarterly blood and urine tests (electrophoresis); six month cardiograms and annual visits to the Boston Center.

The probability that it will progress to organ involvement?  According to the doctor almost certainly.  Have they had other patients with my profile?  Yes, minus the head issue, and almost always it progresses.  Is it possible to live a whole life with the plasma cell disorder and no symptoms.  Not likely.

The question remains whether other centers would recommend a different course, for example chemotherapy to address the plasma cell disorder but not the bone marrow transplant.  Not today, because I have had enough of this medical stuff for awhile, but at some point I might contact another center, perhaps Stanford, and ask that question.  (Having already contacted them I know that they will accept the tests, but require seeing me in person for a second opinion.)

What is not in question is that I must maximize my physical condition in order to be in the best shape possible for when this near inevitable next step will be required.  

Dr. O'Connell commented on what we have already observed: as completely annoying, to say the least, as this whatever it is in my head has been and remains, strangely enough it might also be the vehicle for saving my life.  I know now that I have a disease that is otherwise completely asymptomatic often until significant damage is done.   And so we will worry about next steps when we have to take them, but at least I know the intermediate ones.   That, in itself, is a grace.