IT’S A LIVING…
by Elizabeth Goldstein
The day I was diagnosed with ET I asked my hematologist if I could still live to be 100 – she looked at me for a few seconds and said, “No, probably not that long, but you should have a reasonably normal lifespan if you stay in treatment.” I was shocked, my father was 94 and healthy then and I had always assumed I’d live a very long life. At home that evening, I searched the Internet and read everything I could find about ET and MPN’s.
Of course, the information ranged from completely terrifying to very encouraging and gradually, I accepted the fact that these diseases had very little research to read and seem to behave differently in almost everyone. I realized that I had to face a future of lots of questions and very few answers: will I stay with ET or will it morph into one of the other, less treatable and sometimes fatal, diseases; will Hydrea cause more problems the longer I’m on it or will it just stop working and I’ll have to deal with another drug and possibly, worse side effects; how will I know if my disease is progressing; and so on.
Now, fifteen months after diagnosis, I’m still learning to deal with the symptoms of the disease and the side effects of Hydrea and a daily aspirin: fatigue, lack of appetite, chronic sinusitis, Raynaud’s syndrome, cramps in my fingers and toes, red, dry eyes, etc. I have learned to take advantage of the good days – gardening is a passion and I try to get out and do it on those days or just get household chores done. On the bad days, I try to relax (not one of my strengths) and remember that I’ll probably feel better tomorrow. I have also learned from reading what others with this disease are going through that I am very, very lucky.
So, how long have I got? I’m sixty-five now, and lucky, but who knows and if someone did know, would I want to hear the answer? Learning to live with so much uncertainty isn’t easy but it is living…
© Elizabeth Goldstein 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 Elisabeth Goldstein and MPNforum.com with appropriate and specific direction to the original content.
Comments on: "It’s a living" (3)
I would not give it a second thought as most people die from something else. Be positive, think positive and as the mind thinks the body reacts. You may live to 140, only the man upstairs knows when. Think of your next door neighbor, they could be hit by a car, slip in the tub or have a heart attack – live and enjoy each and everyday.
Hello Elizabeth, Thank you for giving us a clear and succinct outline on how you are coming to grips with the uncertainties of living with a physical uncertainty with neither submission to it nor denial of it. I think it is a good model for many patients to consider and I would like to hear more of your story, perhaps if written on your ‘bad non-gardening’ days it would help you to relax and also preserve the good days. Ex: Was your ET diagnosis incidental to being treated for previous sinusitis, Reynaud’s or owing to onset of new symptoms. Attitudes of friends and family. Your relations with health care professionals. Did your symptoms change after beginning HU? Anything you are comfortable in mentioning. IMO, every MPN story told from experience adds to our understanding things about the neoplasm that are not discovered in research labs.
I’ve lived with ET for 44 years and we are close in age. And my father lived to be 95. I’m planning on it. Thanks for your story.