August 2, 1996
Hello Dr. Cooper,
Thought I would put some thoughts to paper before our appointment today. I have been taking a 20mg dose of prednisone for 33 days. The final methotrexate dose was Monday, July 22. I assume no reply to my FAX meant a refill was not in order.
I did experience some tightness/dryness/constriction at the back of my throat in the first three weeks, but haven't noticed it in recent days.
In general I feel great. My muscle aches and pains have all but disappeared and I have regained mobility and strength in my shoulders and arms after what had become a slow decline. The perspective view from feeling good clearly points up the facts of how low I felt, how I had normalized to the pain and how I had been in some sort of hibernative state.
Most of the symptoms/side effects I will describe have been doing a slow but steady crawl of intensity and purpose. In the first weeks, I felt as though someone was jerking my chain, surprising speedy rushes, yet relentless and gradual. I was resigned and determined to enjoy the ride. I have not filled the downer/sedative prescription you gave me yet, because of my hesitancy to medicate medication.
I am clear headed and focused almost to a fault. I am able to stay up longer hours and get much more accomplished during the day and on into the night. Once I have laid down, it has been taking me a little bit longer to drift off each night. I clocked my heart rate at 90 bpm as I waited to relax my in-gear brain two nights ago. While my sleep cycle has been OK, I take every precaution not to be awakened from a night's sleep, once my brain engages I am hopelessly awake till morning. When I awake in the morning, it is eyes wide open and immediate. I am at full power the instant I realize I am up. Not particularly refreshed or feeling rested but raring to go.
I have found myself mobilized beyond what I thought I was capable. I found myself running across the street for no other reason than my body was propelled, laughing all the way. 2 nights ago I was bounding up an escalator, not because I was in a hurry but my lack of patience with the speed of the escalator. My driving is surgical and extremely Le Mans-like.
There is a new vigor in my body. I can stand up straight from a sitting position and support my weight and height in the posture I remember as mine. Stairs are no longer a dread or pain but 2 at a time. I jump off the couch and bounce from focus to focus, 3 weeks ago I was capable of mere couch potatosity. Gravity was winning the battle and my body felt like it was a sagging limp victim. Although I am not running races, I seem to create an underarm body odor that would suggest I am.
I am bruising quite easily, in part because I am more active and banging into things. I'm not sure where some of the bruises come from and some of the odder bruises are red, like hickeys. you may be able to see a leftover bruise from the kneeling weight of my body on my forecalf, which was quite red and is now 12 days old. Some of the bruising is short lived like the tape mark from the blood draw swab, lasting only a couple of hours, while others have lingered for several weeks.
My skin is the most remarkable baby butt smooth concoction. I can't get over how soft and creamy it feels, as though it is creating its own lotion.
I am also much more sensitive to heat, the very hot showers of a month ago that helped to calm the clenching and allowed me to relax at night are singeing to my touch now. Sitting in a sunny window to gather heat does not take nearly as long and can induce discomfort if I overstay.
My appetite has improved because food doesn't taste like wax anymore.
I am still not consuming much food and lose track of mealtime, too preoccupied with other things to make food a main priority, but I do enjoy the intake much more than before. In retrospect, my meals were a chore and usually produced nausea when I forced myself to '3 squares.' I also desire sugar and can handle large amounts (like I did when I was younger) without getting sugar-sick. Some flatulence/belching but nothing way out of the ordinary. My bowels of the last two days have favored on the insistent, luckily I work at home.
I'm hungry not only for food but for life, knowledge, ideas, creativity, bordering on the obsessive. Confidence in the ability to complete a task or project goes without saying and I find myself diving in and satisfying my long standing completion compulsion.
I am chattery and verbose, which can be entertaining or as I've noticed with friends a bit like a hostage situation. In person or on the phone, I preface with the proviso that I will continue on and they must take the responsibility to cut me off. I will be talkative today and this letter in part should take some of the pressure off having to listen while I rattle on about the oh so important fine points of my everyday life.
Friends tell me I am a bit over the top, and I feel the need to bridle my impulses which seem to muck about in the very primitive range; anger, lust, hunger, hate, paranoia, rage
My temper is hair trigger which is not a characteristic I am familiar with. I am ultimately pretty easy going but within the last week I have become enraged about picayune things, perceived slights or injustices. I know that alot of these things are prednisone induced because the synthetic nature is a very familiar from my last encounter.
My rage is polite and just under the surface. At this point I can stand outside of the situation to referee the seething anger that I ultimately know is ridiculous. Once it is triggered, it grips me and won't readily let go, I came very close to slapping a woman last weekend. Can't see physical assault or provocation as being particularly healthy. I am more aware that the drug is a factor in these kind of base/lizard brain emotions. I have experienced very few emotional tides in a long time, so I may be unaccustomed to juggling so much feeling and so many feelings. I may not be as nimble as the drug in my readjustment to this newfound energy.
I look forward to speaking with and more importantly listening to you today and remember you must take the responsibility to cut me off
Yours very truly,
P.S. Graciously allowing me to videotape your explanations and plan of action was incredibly helpful in communicating the information to my family. With your permission, I would like to show the previous tape to Dr. Len Doberne, the endocrinologist that oversaw the iodine radiation, for his thoughts on anything similar he may have seen in other iodine patients.
If you need to review the tape, I have brought a copy along.