(Rambling worries and problems in caring for a loved one who doesn’t want to be cared for.)
In 1995 my son David, age 45, began to have frequent headaches, malaise and easy fatigue, plus a distinct lack of interest in his previously avid pursuit of hobbies and personal interests. There were periods of irritability punctuated with a lack of patience with innocent others.
This was very different from his usual sunny disposition and upbeat personality. Although he continued an active law practice something was clearly wrong, The indications for some sort of illness were there, but generally ignored, The change in personality did not endear him to clients, colleagues nor judges and his courtroom mien gradually affected his practice.
Finally in 1997 David consulted a physician. A CBC led to a firm diagnosis of polycythemia vera. We were greatly relieved that it wasn’t leukemia, perhaps overly so in our relative ignorance of the immediately serious possibilities of out of control PV that prevailed at the time. “You have about ten years” was frightening, but gave us time at the moment so the hoary adage, “Get a chronic disease and take care of it (for PV by occasional phlebotomies) and you’ll live long and well” was substituted for fear and resignation and unfortunately also in place of active attention to the then current state of hematologic science.
Time and the dogged work of a very few brilliant physicians interested in diseases of myeloproliferation changed all that. David was put on agrilyn with the usual disastrous side effects, then given hydroxyurea which he takes to this day along with aspirin and occasional phlebotomies..As a happy side effect, it restored Dave’s disposition and good temper. At least I credit better PV control for that.
Down thru the years I have learned a little something of the goings on and abnormal proliferations that take place, albeit rarely, in human bone marrow. I read the literature and attended conferences and learned and unlearned some useful things about PV. I was also informed and sometimes “uninformed” by pursuit of the internet. I probably have learned as much via patient advocacy groups as from my academic study. I reckon that misery loves company and you all here have been of much comfort in my learning as well as in the making of many new friends.
David didn’t follow along with me and preferred to “leave it up” to a trusted physician of HIS choice. I’ve tried to interest him in utilizing his hard won personal medical empowerment. Lord, have I tried! I guess he’s satisfied and I ought to stop bugging him, but the looming possibility of myelofibrosis and the emerging advancement of Jakafi over HU won’t let me give up.
He did spit for 23andme to please me. I know, I know, it’s his life let the poor guy alone. Easier to say than do for a concerned father who doesn’t know that much about blood cancers, but sometimes wishes he knew even less. Especially so that at 91 he’s not likely to be around to guide his son if and when his first-born (he probably didn’t fall far from the tree) would consider fatherly advice.
Yes I do realize that there may be thousands of people with uncomplicated PV that don’t ever suffer serious consequences or die from PV —and that they don’t often if ever, post to NGs.
I often wonder what role my genes, my cavalier use of office radiography, my early ignorance re dietary and environmental effects and the genetic risks of early 20th C. Florida farms –fertilizers, insecticides, well water, poor or no refrigeration, raw milk etc. etc.played in Dave’s PV –BUT, by the grace of God, I am here after 91 years.
Is Dave’s PV owing to me? Who knows and since I’m unlikely to father any more children who cares. BUT a father does care. That’s just the way of things and so I ask with all sincerity and humility, what would you do if your child with PV doesn’t want to learn or take help and advice re his disease? As I said “misery loves company” so if anyone here has a similar problem please share it and even if not I’d appreciate your take on my problem. At least for me it IS a problem. Best, Arch
Take me back to the Contents
© Dr. Arch M. and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Dr. Arch M. and MPNforum.com with appropriate and specific direction to the original content.