On the Topic of Decadron

Dear Dr. ________________________

The subject of decadron is a topic that is very heavy on my mind these days. I did not adapt well as a patient and had many troubles. I am sure many factors entered into my maladaption, however, one thing I know is that decadron was a big factor. I was on decadron for many years and for many of those years every week. Though they were relatively low doses, they affected me dramatically. I went through two or three days a week of extreme high, almost mania and it was not a good high. The drug of course was given to prevent the allergic to reaction to two of the primary chemotherapeutic agents I take. Though some people may just clean out their closets and become extremely domestic, I on the other hand, developed somewhat grandiose schemes, even buying a red volvo with a spoiler on the back (I love it, but I would never have bought it - used thank God) and a dog who was extremely ill (I mean almost died) and I bought him even though he had symptoms and was on antibiotic. I also love the dog. He is the smile at the end of the day. So somethings ended up OK, but the worst things that I regret was the overly assertive behavior I exhibited toward you at times. Panicking, calling you whenever I got sick. Writing you excessively and sometimes in a negative tone about things. One thing I must say to you my long time doctor, is that I bear you no ill will. I was going through a bad time that I had little control over. I am deeply sorry about that time, but I know when I was off decadron for two weeks things started to drastically change for me. Though I was attempting change in a variety of ways, trying to regenerate my compassion and become more spiritual, I know I could not have done it without stepping off that decadron roller coaster each week.

I know it was predominantly from the decadron. It seemed normal to me to be on an almost manic high for two or three days and then to crash into a very down state. I constantly cried and felt my situation was dismal. I was regularly panicking, shaking. I was in such utter terror that I grabbed onto anytthing that made me feel better - you made me feel better so I relied very highly on you. I needed you or I would not have survived.

When I have mentioned this to you, I sense you do not think it is important or you do not think this is credible. I wonder if my emotional state made me less credible, but I am a very hard working, meticulous person. Even in the bad times, all my ideas are backed up by the literature. I was trained in graduate school to back up every proposal with literature. I have done this. Even on this score. Yet, I feel you do not accept my knowledge of this situation.

My family can attest to the quality of my life. It was very poor, though I was good at faking. I do not have a perfect life now, but it is managable.

I was very fortunate the day you came in to check a carboplatin reaction and gave me solumedrol and explained the halflives. I had asked about this in the past to be told they were the same. I blame myself though because I pride myself on meticulous research and had not done it thoroughly. But learning that the halflife ws only 12 hours for solumedrol, changed my life. I asked to go on it, and the rest is history. Do I feel well all the time, no I do not, see the next letter, but I can tell you that I do not experience that rollerr coaster, I put great thought into this letter. After getting off decadron, I thought better, wrote better almost never felt depressed or overly euphoric. Was much happier and people could see it. Ask your colleagues for I know you find this hard to believe, but I know it.

I don't say it to be right. I was not right to not know about the drug. I say it to help other people in the same position.I have read extensively that coritico sterroids can cause psychiatric problems including mania, depression etc. I took them every week for seven years or so. I feel that patients who have these drugs should be told extensively of the potiential side effects and some consideration should be given perhaps to the personality of the patient (I am a little intense high strung) and perhaps to the prior psychiatric history of the patient. I think this is important in the choice of steroid though they have their obvious importance in reducing inflamation. They are truly the wonder drug, that works wonders, but they are also the most powerful drug in terms of side effects that I have ever taken and this includes taxotere, navelbine, carboplatin, temodar and now, etopside.

My second reason is personal. I feel that a medical problem requires a medical solution. I take responsibility for the lack of research, but I also feel I really could not see what it was doing to me. The drug itself altered my thinking and I came to believe it was how cancer patients felt, but I believe that in a medical world, there should be more understanding at least in retrospect about a medical problem and greater recognition of the source of the problem. To some extent I could not get out of it and I tried every week. I did not have perspective on it, until I was free of it. I would really hope that you could see this one day. I hope one day to be judged as who I am, for my information to be taken and considered out of this context.

This problem unfortunately damaged my relationship with you and my relationship with others. It makes me sad. I hope one day you can view this as a largely medical problem, see me for who I am now which is who I was before I was treated and listen to my learning, research and experience in a fresh context. That is my dream and hope. I feel I lost a tremendous amount over the years. I realize it is hard to separate negative events from this horrible misery I was in, from the real me who I think you only know a little of.

I do not see the years as bad. I see a very great and successful collaboration and I thank God the chemistry part of my brain is still working, though lately I understand certain aspects of chemistry I have been studying for years better. I am grateful to you for my life and I never changed inside. When I rejected by people, told I was a bad person by some and that I was some things I will not even mention, I knew inside it was not true. People seldom saw me the me my family and students know, which was my great frustration of my life.

Sincerely, as always, your patient, Mary