I am sitting here underground, deep in the belly of Penn Station on Amtrak train number 94 northbound to Boston. All around me I see signs beckoning me to Key West, Marathon and the Islands. On this blustery February day in NYC the thought of a trip somewhere warm is seductive. But my destination is northbound, 100 miles south of Boston. The cold and snow will be there waiting. My visit to NYC has me wondering if I should consider a trip. A trip on the treatment train.
My trip to NYC was my twice annual visit with Dr. Silver. I am part of a large group of early diagnosed MPN patients who have an MPN that may have been confirmed by a Jak2 test or a bone marrow biopsy but symptoms are relatively minor and quality of life adequate so we are considered low risk by our doctors and treated with careful monitoring of counts and symptoms. A year ago a red cell mass study confirmed my diagnosis as ET, but there has always been a lingering question if I might actually have early stage PV. A paper published just the day before my visit
had Dr. Silver re-thinking my diagnosis. This decision would determine when to jump on board the treatment train. As Dr. Silver reminded me, a trip on the treatment train is a ‘shared decision’.
Recently my symptoms have increased. Minor chronic headaches, occasionally significant fatigue, an infrequent ocular migraine and the infamous itching after showers. Blood counts all over the place that suggest either ET or PV, depending on who is reading the labs. The big question is when do I start the journey and jump on the treatment train?
Unlike a seductive trip on Amtrak to Key West the treatment train doesn't stop. The treatment train continues on. It may take long station stops or change tracks to add or lose cars, but it never stops. As a patient with a chronic illness invisible to even my closest family it can be difficult to feel legitimate. I have a disease. Some call it a blood cancer. I feel different and know I have symptoms. But for now it is convenient to pretend my MPN doesn't exist. If I jump on the treatment train my disease becomes real. I become a 'sick patient'. One in need of treatment FOR THE REST OF MY LIFE.
Am ready for a lifelong train ride?
My life with an MPN is the same as it was before. It hasn't changed except for the ever present knowledge that I am no longer that ‘happy boring patient’ with a handful of medical visits each year. I have a disease that must be monitored and will progress. The biggest change in my life has been the mind game of becoming a PATIENT with an EXOTIC disease. I have a posse of specialists and a half dozen more appointments to my schedule. I have regular blood sticks, but my life hasn't changed. So why should I take a trip on the treatment train?
There is a psychological shift that occurs when one moves from a patient with an invisible disease that requires no treatment to that of a patient who needs treatment. We become sicker even as the treatment makes us better. I can't pretend the disease isn't real if the label on the prescription bottle advises me not to touch the pills. I can't ignore the disease if I am looking at a bright red SHARPS disposal box in the bathroom each day. I cannot avoid the disease as I prepare a syringe with medication for a weekly injection.
Does riding the treatment train make my disease legitimate in the eyes of family and friends? Are the side effects of treatment better than the 'minor' complaints I have without treatment? Will treatment put my disease into remission and make me feel better? Is the devil I know worse than the devil I don't know?
I am a woman who needs well defined parameters. I like yes/no answers. A trip on the treatment train might move my life forward by taking me out of the station towards a destination. Perhaps a destination defined by wellness without the anxiety of waiting. I don’t know ‘what’ I am waiting for. Higher counts, thrombotic event, a cure?
A trip on the treatment train is a shared decision. I can’t it make alone.
The MPN social networking community is a wonderfully caring and informative group. Together we bitch and complain, laugh and share pain. We get it. We understand. It can be tempting watching others on the treatment train to join them in the journey. I listen to stories of trips to exotic locations on the Jakafi express or controversial pegalated interferon coach and see the crowded hydroxy urea cars and I can't help but wonder if a trip would be right for me. Would any of those cars on the treatment train bring relaxation and peace?
I can never be that happy boring patient again. Those Amtrak signs call me to warm exotic locations, but I am afraid my trip may leave me riding the treatment train forever. Just like Charlie in an old Boston folk song beneath the streets of Boston lost on the M.T.A.
Next stop...New London
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