September 3, 2001
The DRUG - A Steroid Tale
John Fetto, JD
My wife recently had her cancer advance to her brain. She was dizzy, vomiting for no reason meaning even when she had nothing to eat for about two weeks. Finally one night when she fell while standing inside a shop with her sisters, she was taken to the emergency room where they diagnosed her as having an "olive shaped" growth of cancer in her brain. At Stanford Hospital they were able to treat with something called "x-knife". X knife is a radiation beam they use to hit the tumor from a variety of angles. Where the beam intersects the tumor dies, and according to their computer model, they have a 95 percent chance of killing it to the extent it shrinks down to next to nothing and does not grow. This was only a few months ago. One cat scan revealed that it had been reduced by at least 50 percent. We go for another next week. If it works it's amazing, it will literally have killed the tumor without breaking her skin. But this article isn't about that. It's about the drug they gave her to hold down the swelling while the tumor died and the side effects it has. No one really warned us about the side effects from this drug called decadron. I call it THE DRUG, for convenience and because it's effect is so dramatic, so loud, I think it deserves to be in caps. Since then I've encountered so many stories about it, I think the experience is almost universal. I'm not a chemist. What follows is a layman's or husband's description of THE DRUG.
THE DRUG, Decadron is a steroid. Not like the steroids that the athletes abuse. Those steroids build up your muscle or tissue. This one tears it down. It especially reduces the swelling around in the tumor in the brain so that there is almost immediate relief. As soon as they found the tumor, they started my wife on decadron fed intravenously through her vein (she had a port.) The reason she was throwing up, and people with brain mets throw up, is that the brain swells and part of the brain is pushed against the skill, activating the center which says it's time to throw up. It's like holding your finger down on a button. The decadron reduced the swelling quickly and she no longer felt like she had to throw up. This was an amazing benefit. After two days they sent her home with a bottle of the steroids which she had to take ever six hours, 4mg at a time, 16 mgs total. This is a lot. Eventually I would count the mgs one by one as she was weaned off THE DRUG.
First word of advice. If you're a care taker, don't let the person who is taking the decadron to administer the drugs for him or herself. I did. The week after the diagnosis, she seemed much better. There was a two week gap between diagnosis and the X knife (during which time the tumor grew in diameter by another 10 percent, from 3.2 cm in diameter to 3.8. This is a lot, when you figure the volume of it.)
But my wife seemed fine. The house was getting cleaned up. She had friends over every day. I was free to return to work and from my office could cordinate the schedule of office appointments. I insisted that her scans be submitted to the two best hospitals in the area, Stanford and UCSF, despite the fact the local oncologist assured me that if one place could kill it with radiation they both could. He was wrong. UCSF wouldn't try their gamma knife; Stanford would and we went to Stanford without losing any down time.
During this time my wife seemed to be okay. She had boundless energy. She would be up early. Really early, like 4:00 a.m. to make sure she took her pills at 6:00 a.m. They told us she would gain weight with the steroids and she was now eating every four hours or so. Ultimately she would gain more than 20 lbs. But I really didn't worry about this. She would gain it; she would lose it.
The first clue that I had that there might be some more serious side effects to THE DRUG was when I pulled into the driveway to our house and the tree in front of the house was gone. My wife hated the tree. We have small deck out in front and this poor plum tree really didn't have enough room to grow. It was leaning against our house a bit. Anyway my wife hasn't liked it for years. Well, with the steroids now though, anything offensive about the house had to be changed immediately. I later talked to someone on line who explained that when she was on steroids, she came home one night and ripped all the paneling off her kitchen. She had hated the paneling for years, but on steroids her distaste became so intolerable it required immediate action.
Boxes began to arrive. I don't mean a small box. I mean boxes that were as tall as my chest and a yard wide. They were from Martha Stewart. They were from Frontgate. They were from all the places you get those magazines from for home improvement. My wife now had all the magazines by her computer and they were marked with yellow tags. The yellow tags were there to tell her which pages had items that she really needed to and did order. There were so many yellow postit notes it seemed it would be more effecient to mark the pages that didn't have something to order. And every day two or three boxes like this arrived with essentials that she had ordered, usually at 4:00 a.m in the morning.
This was a huge change for my wife. I'm the spendthrift. For the 14 years or so we had been together she has been the one who holds the spending back. Prior to this time, she would literally sort through the things I would throw away and take them out and put them back. When we went to the store, she would put back the things I would put into the cart and say no, we really don't need that. She would make do, conserve, spend very, very little. Now the sky was the limit.
At first I said, what the hell. If I had a brain tumor, I probably would be guilty of worse excesses. I didn't think of it as part of THE DRUG. I didn't care about the money. I had lost more in the stock market. When I began to care was when I came home one night, a Friday night, perhaps two weeks after the the X knife at Stanford, four weeks after diagnosis. I think the timing of this is important, since it meant that she had been on steroids for approximately 4 weeks. Here's what happened.
I came home and my wife and her best friend Virginnia, a true saint, were opening more boxes and trying to get ready for Sunday. Previous to this date, all I knew about the event from Sunday was that she had invited over a "few friends" to watch the Mists of Avalon on TNT. Some of our friends don't get cable, so this seemed like a fun thing. It seemed harmless. Well on Friday, I found the small gathering had grown to a party of 15, that dinner was to be served, and that movers were coming the next day to re-arrange all the furniture in our house (I'm serious), so that there would be room for what would be the largest party we have ever had.
I blinked, looked at them like they were mad, and made the serious tactical error of arguing with them. Up till now it was, "Yes, dear.." but having the largest party we have ever had two weeks after major radiation surgery to the brain, seemed mad. It was, but so was arguing about it. To make a long story short, we ended up re-arranging all the furniture. A whole series of major changes which we planned to the house were done in a 24 hour period amidst loud, drawn out fights. Screaming contests at the top of one's lungs, none of which slowed down, much less derailed the unstopped engine of change which was running amok through the house.
I started to ask on line about the side effects to this drug and received a deluge of helpful often hilarious stories. One person said the nickname for this drug for him and his wife, was the "I'm the boss!" drug. Truly it was. Anyone who met my wife before is usually impressed by how nice, how sweet, how genuinely good natured she was. Well that person was gone, replaced by her evil twin. When I asked a different husband how he handled it, this husband, a Brit wrote me, "I would do everything she asked, and complain bitterly to my friends." Well I wasn't British. I was an American, and a lawyer. A champion of the civil court who didn't back down in the face of large insurance companies or imposing defense counsel. I had also studied martial arts and towered over my 5 foot four inch wife. So I argued, slammed my fist, and then did whatever she wanted, and complained bitterly all over the net, to friends at work, to perfect strangers I met.
Saturday night. After 24 hours of planning, reorganizing the whole house, tossing out half of our furniture and ordering more, I finally got my wife to sit with me and just relax. We folded out a converitable sofa in front of the t.v. and began to watch a movie. I don't remember what it was, but my wife seemed to genuinely relax.
She dozed. I think she had been sleep deprived for weeks. Another side effect of the drug was insomnia, but we had failed to get a prescription for sleeping. This is another major mistake. I now began to construct one from tylenol p.m. and melatonin, my nightly ritual and she slept, briefly. When she woke up, to our now organized and clean house, we chatted. The movie was still on, and somehow we lighted on the topic of tomorrow's party. To which she responded, "What party?" She hadn't remembered planning it.
This is not my wife. If it happens to your significant other, it is not them. It is THE DRUG. Another friend who had taken steroids and who was a college professor, a writer, a psychoanalyst, who possessed a mind like a steel trap, told me that she still couldn't account for two days when she was on THE DRUG. Supposedly, she had gone to a cocktail party and said things that she couldn't believe she said.
And this is the odd thing. As your partner is raving at you, there may be an element of truth in what they say. Not a small element. A deep and painful hunk of truth that you remember long after it's over. It's the things you may think about the person you love, but you don't say because you know it will hurt them. So there you are, working as hard as you can to help this person you love, and they're pointing out all the ugly truths about yourself. The Brit I mentioned before, told me suffering THE DRUG was the hardest thing he did in the long travail of his wife's breast cancer which ultimately took his wife's life. You're just not expecting it. You're expecting to be thanked, to be be thanked profusely, and instead the conversation is much less than flattering.
That was the peak. After that, I took control of the steroids to make sure that she was getting the precise dossage she needed, and as per the doctors instructions I began to wean her off the drug. From 4 mg to 3m every six hours for a week, then week by week down to zero. By now her weight had peaked, and her legs were strangely weak. She thought it was because she had gained so much weigh, but one of the other things they don't tell you is that it tears down the muscles in your limbs, particularly the quads in your legs. Well our house is three stories, built into the Oakland Hills. Literally she found that she couldn't walk up and down staris. Which scared her. Realize that after the x-knife they say come back in two months and we'll see if it works. Well, how do you know if it doesn't work? Well if the headaches return, the vomiting returns, or there's "personalty changes." Well what are the side effects of steroids. Personality changes. Dramatic personality changes. So how do you know if the tumor is growing or if it's just the effect of THE DRUG.
You don't. And the fear lies around the house like some grinning cat that you don't talk about. Another side effect of the drug is paranoia. Well I think anyone who has cancer, much less a brain tumor has a right to worry. Add THE DRUG which heightens the paranoia to epic porportions, and one night you may find yourself unable to catch your breath, and arguing with your husband, that you have to go to the emergency room right now.
Another husband, seperate from the other two already quoted, said he had driven his wife many times to the emergency room only to find out it was THE DRUG. When we got there, luckily the same doctor who receieved her five weeks before (when she was originally diagnosed; now 3 weeks after x knife) was on duty and remembered my good wife. She wanted oxygen, he gave her oxygen though her blood level showed no shortage of oxygen. He gave her valium and reassurance, and to be on the safe side took another scan of her head. it showed that the tumor had been reduced almost in half. This was great, tremendous news. He also gave me a prescription for valium to be administered with the steroids to take some of the edge off the steroids.
Slowly my old wife returned. And with her, her old frugality. Now instead of rearanging furniture my time was spend helping to box up all the things she had ordered and didn't need and taking them to the post office. I tried to argue her out of some of things, I thought were especially kewl, and won some of the arguments. Give and take was now back. We could talk again. We were on the same side again. We had gotten through this part. And perhaps this will help you, if you or someone you love has to take THE DRUG.