Pain, physical and mental

First a quick update on the cancer front. There is new pain in my ribs. The diagnostic radiologist didn’t see anything on the ultrasound, so she’s recommending a PET-CT as the next step. I haven’t been able to reach my oncologist (who is the one who has to order it) through the clinics where she works, so I’m going to call her on her mobile. I don’t like to do that, but after discussing it with my GP, that’s what I decided to do. I’ll try to reach her today. I don’t like being importunate and I always avoid taking advantage of anything that might smack of privilege, so it was a difficult decision for me to make.

Then there are the mental health issues. When I saw the onco a week or two ago I discussed my anxiety with her, and we talked about the prevalence of anxiety in people with cancer. She was very emphatic about it being a quality of life issue and strongly encouraged me to talk to my GP about it.

Now, I have never explicitly stated in this blog that I used to be a mental health professional, but perhaps the time to “come out” has arrived. Like many MH providers, I apply a double standard to myself, preferring to think that I can deal with just about anything using my own resources. Like many MH providers, I’m full of bull puckey. In point of fact, I am well past the point at which I’d suggest to friends, let alone patients, that they need help.

So I packed up my false pride and machismo (machisma?) and asked my GP, who is a former colleague, what he thought. He kindly and matter-of-factly asked a few open questions and offered me Venlafaxine (also known as Effexor), a drug that is used for depression, anxiety and even neuropathic pain (like post-mastectomy pain syndrome). I’ve agreed to give it a try, along with my usual routine of quiet prayer and meditation, mindfulness exercises and as much exercise as my exhausted body can tolerate.

So that is what taking care of myself looks like today. Writing openly about these difficulties is also a way of taking care of myself, and maybe also of encouraging other people to take care of themselves. That is the paradox of writing a blog like this. I started it for myself, and its primary purpose is still to provide an outlet for my thoughts and feelings. Over time, more and more people have started reading it, and some people have told me that they are able to relate to it and get something positive from it. That makes me very happy. Thank you.

(When I get news about the PET-CT, I’ll post an update here or on the blog’s Facebook page Telling Knots, the 30%.)

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Pain is in the brain

Pain is much on my mind lately. As recently as last November I wrote a post (Pain) in which I talked about my reluctance to use narcotic pain relief. Recent readers of Telling Knots will know that I have since agreed to take the stuff in spite of my objections. I still hate it and I still take as little as possible as infrequently as possible.

I wish there was a non-narcotic medicine for moderate to severe pain, and every now and then I spend some time on PubMed looking for answers. I stumbled across some fascinating findings today.

The image above and its caption are from a USA Today online article from April 10, 2013. (Please hover over the image with your mouse to read the explanation and photo credit.) This very exciting research used functional Magnetic  Resonance Imaging (fMRI) to develop a “neurological signature” of physical pain.

A free preview of the original article in the New England Journal of Medicine can be see online here.

It is very, very early days and this research consists of four studies with a total of only 114 healthy subjects in the laboratory. Even so, the possibilities are tantalizing. The USA Today article quotes lead author Tor Wager: “”Many people suffer from chronic pain, and they’re not always believed. We see this as a way to confirm or corroborate pain if there is a doubt.”

The novelty of this study is not simply producing an image of what happens in the brain when pain is perceived, but in producing a combined signature that can actually measure pain. Furthermore, the researchers were able to distinguish physical pain from social or emotional pain.

As I said at the beginning of this post,I wish there was a non-narcotic medicine for moderate to severe pain, and obviously, I am not the only person interested in this: the study was partially funded by the (United States) National Institute on Drug Abuse, for example.

Aside from this being very cool research that may have many fascinating applications in the not-too-distant future, there is one aspect of it that I immediately hooked into. As Dr. Allan Ropper told USA Today, “This is beginning to open a new wedge into brain science,” Ropper said. “There may be completely novel ways of treating pain by focusing on these areas of the brain rather than on conventional medications which block pain impulses from getting into the spinal cord and brain.”

And that made me do a happy dance. Can you imagine how wonderful it would be to be able to treat pain (the whole pain, and nothing but the pain) without the side effects of narcotics? I know this is far in the future and I may not live to see it, but just the fact neuroscientists are working on it makes me very, very happy.

Better living through chemistry?

It was only about four or five months ago that I wrote Pain, a post about my decision to put off taking opiate pain relievers. I was – and still am – very ambivalent about it. The difference being that now I’ve taken the plunge.

This is a lot more significant to me than just the fact that my pain is becoming harder to manage through less powerful means. In that post, I wrote:

The last reason I give is closely tied with what I think is the psychological underpinning of my reluctance. I think I have an irrational sense that starting on narcotics will mean that I’m at the end, that all that is left for me is death. The thing is, whether or not I start using opiates now, the fact remains that I have a terminal disease, that I will die sooner rather than later. My irrational feeling is that taking these drugs will hasten the approach of the end. I know this isn’t true; the fact remains: that’s how I feel.

The moment has come. I have had to start occasionally taking oxycodone for pain that cannot be alleviated by other means. I don’t take it all the time, or even every day, but I can no longer deny the fact that this pain really hurts.

I feel pretty awful about it. Sometimes I feel like I’m doing something wrong, like I’m cheating somehow. Sometimes I feel like I’ve acquiesced to a malevolent power. Sometimes I feel like I’ve hastened my death with this decision.

I know this isn’t true; the fact remains: that’s how I feel.

So, reframe it. I take this medicine to make my life more livable, to be better able to take care of myself, to better enjoy my days and nights. When the pain is manageable I can pray better, work better, rest better, play better. When “Oh, dear Lord, this hurts!” is not the sole thought in my head I can sing, tell jokes, enjoy books and music, play Words with Friends and Lexulous.

When the pain recedes considerably, I can tell myself that I’m not that sick.

I know this isn’t true; the fact remains, that’s how I feel.

So I guess I am still ambivalent about taking narcotics. I am going to do my best to relax and accept it as part of my life at this time – but without ever denying my feelings. When God created the universe and all that it holds, emotions were part of it. And he saw that it was good.

So I’ll take my emotions, my ambivalence and my pain meds and I’ll keep moving through this world as best I can.

PAIN

Yesterday I met with one of my doctors to discuss my options for pain relief. I have been resisting taking the usual narcotics that are given for cancer pain for a number of reasons.

• I have a high tolerance for pain, so I am choosing to take advantage of the fact.
• I don’t like how they make me feel. I don’t like that woozy, dopey feeling, that ongoing drowsiness that turns day into night into day. Narcotics(*) cut you off from feeling not only pain, but life.
• I have a mild allergy to opiates (narcotics). When I take even a small dose my whole body starts to itch, even inside my ears and nose. It is intolerable. Therefore, if I have to take narcotics, I’ll have to take antihistamines with them – and I hate the woozy antihistamine feeling even more than I hate the opiate feeling.
• Once I start down the opiate road, I’ll be taking these drugs for the rest of my life, however short or long it may be.

The last reason I give is closely tied with what I think is the psychological underpinning of my reluctance. I think I have an irrational sense that starting on narcotics will mean that I’m at the end, that all that is left for me is death. The thing is, whether or not I start using opiates now, the fact remains that I have a terminal disease, that I will die sooner rather than later. My irrational feeling is that taking these drugs will hasten the approach of the end. I know this isn’t true; the fact remains: that’s how I feel.

I use some techniques besides medication to control my pain. When I pray I sometimes go into an altered state that would probably be an alpha state(**) if anyone was looking. I can also achieve this state through progressive relaxation of muscle groups. When I’m “there” I am aware of pain, but it doesn’t bother me. Hard to explain.

Then, there is endorphin production. I touched on this in a previous post, Kindling the Lights of Fire. We can stimulate endorphin secretion in a number of ways – physical activity is one. Laughing uproariously is another; so is crying. There are even certain foods that help. Endorphins are hugely important to how we experience pain. This is a link to the abstract of a slightly technical article on the subject.

Other non-pharmaceutical measures include doing my best to eat a balanced diet, getting balanced amounts of rest and exercise, and maintaining relationships, hobbies and interests so that I don’t spend all my time thinking about myself.

Having written all that, I feel less guilty about refusing the opiate option for now. I’m going to try a prescription NSAID that my doctor suggested and my hope is that in combination with these other measures, it will be enough for now. Even if my feelings about opiates are irrational, it can’t be a bad thing to avoid them for as long as I can.

I am coming back a few minutes after publishing this post to add the following:

I am completely in favor of availability of strong opiate pain relievers to people with metastatic cancer. No one should conclude from what I wrote above that I am advocating withholding or refraining from them. It all just has to do with me, right now, and my own feelings about my own illness.

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(*) In this post I’ve treated the words “narcotic” and “opiate” as synonymous.

(**) An awake, relaxed state associated with a lack of psychological tension and decreased attention to external stimulation. Measured on an EEG (electroencephalogram) at frequencies of 8-13 Hz and amplitudes of 20-200 μV. (Yes, I’m showing off. I can’t remember names of everyday objects or find the right word in the right language for what I want to say, but dammit, I still remember factoids from my training in the 1980s.)

Wednesday Video: Cancer Pain

In this short video, Dr. Kathleen M. Foley, a neurologist on Sloan-Kettering Pain and Palliative Care Service provides a sobering fact: about half of all cancer pain is not treated. 

 

In the current state of medical and pharmaceutical knowledge this is inexcusable.