So if you’ve read anything about trends in modern medicine, you’ve noted that what is imminently clear is that treatments need to be tailored to the needs of individuals and not to broad targets of whatever is “average.” At least that’s what scientists know. But are doctors scientists? Some are. But a great many are not. And the result of that difference is that when most of us are being treated for a condition, we will be looked at in terms of a protocol which likely is intended for what I call, “the great middle.”
If you remember being taught what a bell curve is in school, you’ll know that there is a big rise in the center and smaller wings on either side of that rise. Woe to those of us who don’t fall comfortably into that big spot. Our responses to the protocols can surely be less than wonderful. Last Wednesday morning I showed up at my local hospital for a long overdue knee replacement surgery. The first thing that happens is “prep.” The nurses get you ready for your procedure, followed by the anesthesiologist whose job it is to keep you alive and asleep and then alive and awake.
The first thing I ingested was an oral cocktail of 4 different pills selected by my orthopedic surgeon. Last year when I had my first knee replaced, I asked the nurse what the cocktail was for and how the drugs were chosen. She didn’t really know so she called to ask my doctor. First he phoned me to explain but then he felt a personal appearance in my room was in order. I could tell he was annoyed, especially when he asked me the following question: “if you boarded an airplane, would you go into the cockpit to ask the pilot what his plans were for your flight?” When my response was that my behavior would depend on the circumstances, he wasn’t amused. This guy likes being inside the lines. After that first procedure, he went out to speak with my kids and told them they’d need to sit on me during my recovery. We’re not a great match. But in my part of the world his surgical outcomes are the highest rated. So I stayed with him for my second rodeo. That meant that this time, I just didn’t bother asking much about the pre-operative cocktail. I’d survived it last October and gambled that I would this time.
Next came the anesthesiologist. He was going to give me a nerve block in my inner thigh which would numb the nerves to my knee, offering more pain relief. After all, they do saw part of your bone off. I was given a drug to relax me before this procedure. It didn’t work very well. I asked him to show me how he made his choice of where to inject the rather large bolus of the rather dreadfully named “nerve agent.” As I watched on a sonogram, he pointed out my femoral artery and mentioned how important it was to avoid that lifeline. This, while poking and manipulating the large (at least to me) syringe which he put into a few places in my thigh. After that I was rolled into the operating theater. After some adjusting between my hospital bed and the operating table, I slid over and was descended upon by gowned and gloved people who began to attach drips to my IV. Eventually I said goodbye as I inhaled mystical concoctions from a mask they put over my face.
The next thing I knew I was in post-op, looking around at my fellow recoverers and asking for ice chips. When I finally got to my hospital room I had more medicines injected into my IV. I know there were antibiotics and pain meds. I’m not sure how many anesthetics I received that way. Eventually, the nurses began to appear with little clear cups filled with different pills and capsules. I knew they were for pain and blood thinning and stomach problems and constipation. They showed up every few hours. When it became clear that I was doing well enough to be released the following day, a flurry of paperwork was done and I was given seven new prescriptions to pick up on the way home. These seven were in addition to three prescriptions I take on a regular basis. Along with them, I had seven other pills which were supplements of one sort or another, each to either heal, prevent or override one effect or another.
When I got home I actually needed a bag to carry what amounted to 17 different drugs to be taken daily. Oh no, I said, oh no. I didn’t ever fill the big opioid guns I’d been given for my first surgery. I have a high pain tolerance and didn’t want to borrow any potential addiction trouble. My mom was addicted to medication most of her life and I’d rather scream in the street than go through the multitude of issues that her drug use spawned. But I thought I’d try the lower level ones. I was fed up in a day. I was fuzzy, dizzy and lightheaded. My stomach hurt. When I’d wake from a nap, my tongue was stuck to the roof of my mouth. Cotton head.
Although I was mobile, I just felt rotten. I started looking up side effects of all the medications. Each, both prescribed and over the counter, had ominously long and scary lists of problems. Of course, I understand that for liability reasons, even if only one person experienced a side effect it would need to be included in the warnings. But many medications had the same side effects – how could I ever know which drug was causing which feeling, with so many introduced simultaneously? I had an interesting chat with my son-in-law, who is a scientist and a chemistry professor. He told me some interesting stories about different ethnic groups who had specific mutations and for whom certain painkillers would have no positive effect whatsoever. No one really knows anything about what makes me “me.”
So I decided to stop taking all the medications except my usual ones and a few which I considered vital to a healthy outcome for me. I didn’t consult my surgeon. I couldn’t see the percentage in doing that. I’d just be the questioning rule breaker to him and he and I aren’t done with each other yet. So I’m trusting myself and my years of life experience to guide me through this recovery. I went to my first physical therapy appointment today which went very well. I’ve had the same person for both my knees and she told me I was way ahead of the curve compared to her average patient, regardless of age. She did mention that so many people come in foggy from drugs that they’re barely functional. So with a little pain tolerance, I get a head start. The point is, patient beware. Do your homework and be an active participant in your own care. What you know about yourself counts. Doctors don’t know everything. Let’s use our brains while they still work and maybe we’ll be treated more kindly by the rest of our bodies.
2) Odd Feelings
Life can be so random and serendipitous. Who’d have thought that a person I’ve known since I was a child would wind up marrying one of my husband’s high school classmates? Michael and I found out that happened when we attended my 20th high school reunion, thirty years ago. I’m not sure if we knew beforehand but I remember Michael and his buddy being glad to see each other and catch up on their lives at this event that belonged to their wives. Fast forward to 2017, the year Michael died and the 50th high school reunion of his graduating class. His friend added me to their 1967 class reunion social media posts. In addition, one of my oldest friends was a classmate of Michael’s, and I gave her messages to pass along to certain classmates about whom Michael had told me many stories. His death was very fresh back then and I numbly read through posts written by his old friends and felt the strangeness of seeing him listed on the “In Memoriam” section. I was thinking about our life together, not his childhood.
Now more than two years have passed. Michael’s classmates have been turning 70 this year. Although I was a year behind him in school, I’ve just turned 68 as I’d skipped a year of school when I was young. So despite having gotten through what should have been Michael’s 70th birthday, I didn’t register that this significant birthday would be cause for another celebratory event. But suddenly I found my membership in his class’s social media groups exposing me to the bash that was going to occur last weekend. My head is certainly more clear than it was two years ago, despite my knee surgery and drug blur. Before I knew it, I was watching live feed Facebook video of all the people who’d gathered to share this event. What an incredibly strange experience. Except for his friend who is married to mine, I haven’t seen most of these people except for yearbook photos. But I know about them. I know the women Michael had sex with when they were young. I know who was a virgin and who wasn’t. I know who drank and who didn’t. Whose homes were broken and whose weren’t. Which person owned what kind of dog. Whose mothers were nicer to Michael than his own. And there they were, having fun, eating, talking while I was a voyeur. Admittedly, although it makes me feel small, a jealous voyeur. Why were they alive when Michael isn’t?
Why did he draw the random short straw for a miserable rare cancer? Why did he look so handsome and robust, almost to the very end, despite years of treatment and disease? Why, why and more why? I’m not exactly thick-headed. And yet here I am, still going round and round with so many ifs and maybes, and the unattractive willingness on my part to trade in so many people if only I could get him back to go through these still vital years with me. Maybe it’s ugly and selfish. But it’s honest. When my sensibilities aren’t flooded by my desire to get that life that was stolen from me, I’m nicer and more kindly to the lucky people. But I’d be a liar if I said this wasn’t a part of me. So here I stand with all my flaws. That’s the way it goes.