(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
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Comments on: "Arch’s Corner – The care of a reluctant loved one" (6)
I can assure you that you did nothing to cause your son’s PRV. If anyone knew what cause it there would be a cure. Years ago I had breast cancer and tried to figure out why but there is no why. People can be fat, thin, drink, not drink, exercise, not exercise etc. but my golly they still get a crazy disease – you did nothing wrong. Men can be so stubborn but maybe If you printed out a few articles and mailed them to him he may read them. I am also on HU and thinking about changing to another medication and may and may not do it. Many people have been on HU for well over 25 years and doing well, I think that I will wait awhile to see how the new drugs pan out; in the meantime, faith gets me through. Hang in there, after awhile I am sure that he will want to know more about. You are a wonderful dad to keep up with all the research on your sons disease and someday he will realise that.
Hi Arch, as always I enjoyed reading your column this month. Thank you for raising this interesting topic – Care of the Reluctant Loved One. As a Dietitian I often find myself wanting to help family and friends with health advice when I see those nearest and dearest to me in need or going through a health crisis. However, I know how hard it can be to walk the fine line between giving timely, welcomed, appreciated assistance or unintentionally offending by offering unwanted advice, which may even be percieved as interfering. I can understand how hard it must be to stand back and watch an (adult) child go through a serious health issue without accepting your help as a parent and a health professional. As a PV pt I am often (silently) glad I am the one coping with this disease rather than one of my wonderful, supportive family members, as I would find it much harder to watch a loved one battle this disease, while feeling powerless to help. Therefore, I can understand how hard it must be for you to watch your son cope with his PV in his own private way, which may not be the way you would choose yourself. However, I expect he does appreciate your love and concern but just wants to manage it in his own way and maybe this is his best form of coping at present. Best…Nathalie
Arch, so good to hear from you again. I am wondering, too, what started my PV, although it started later than David’s. Could it be living in a place where nuclear work has been done? Living in a beautiful but polluted area of Seattle, where planes on their descent course might have dropped jet fuel, even though they were almost too high to hear? So many things are beautiful but toxic. How I miss that beautiful lake in Seattle, but here in the dry dessert the air is better, even at 7000 feet. I joke that I’m always flying at or above the pressurization level of an airplane. I miss my airplane designer husband so much.
Arch I think what David is going through is normal. No one can fully understand the mental stress of the diagnosis and reality of their life potentially being cut short. There is a good article in today’s Wall Street Journal talking about CEO’s and Cancer bone of the CEO’s talks about everyday at some point his mind wanders off to thinking about his disease. I am interested in the grumpiness David experiences because I believe it’s an undiagnosed system which can be a factor in our MPN’s.
I have no children but worked with the mentally ill for 33 years and have watched all parents suffer trying to get treatment for their kid who were unwilling to accept help and denied a problem. I suspect kid (of all ages) with diabetes live in denial too while anxious parents watch. Heck, my father in law treated diabetes like a casual illness. You certainly get an A+ for effort and I wouldn’t quit trying. On some level he is listening.
It IS A problem, Arch. Some people put blinders on until the ugly reality hits them in the face.