On the Evening of a Bad Day

I know that no one ever promised life would be fair. 

I know there is no reason that this shouldn’t have happened to me and no reason why it did.
I know that sometimes things just happen and we don’t know why.

I also know that I’m fine in myself, which is how I say that I am basically, fundamentally at peace and that a stream of quiet joy and serenity flows underneath all the hard stuff and that once I calm down I’ll be able to tap into it again.

I know all those things.

But right now? Right now I’m sad that I’m in pain and that I have advanced cancer and that my life has become so limited. (*)

I’m glad that I have friends around the world and that I can reach out to them and have contact within minutes, less. But I wish there was someone here who would put their arms around me and hold me and pray with me and stroke my hair and help me through the hard parts.

Sometimes people write very complimentary things to me in the comments of posts. That is part of the reason that I think it’s important to write about these times, too. Yes, I practice mindfulness—but not all the time. Yes, I know how to change my attitude—but sometimes I don’t have the strength to do it.

I get down, I get angry, I get lonely, I get frustrated. These feelings come and they are awful. But I also know that “feelings are not the boss of me”, as I like to say. I know that in a few hours or the next day I’ll be back to baseline.

So right now I’m going to make some hot chocolate and take a sleeping pill and set another pain pill out ready in case I need it during the night. I’m going to spend some time with my friends on Facebook—and these are real people, real friends—and then I’ll go to bed for the night.

This sonnet by Keats fits my feeling at this time. Sleep, comfort, loneliness, death.

To Sleep

O soft embalmer of the still midnight,
      Shutting, with careful fingers and benign,
Our gloom-pleas’d eyes, embower’d from the light,
      Enshaded in forgetfulness divine:
O soothest Sleep! if so it please thee, close
      In midst of this thine hymn my willing eyes,
Or wait the “Amen,” ere thy poppy throws
      Around my bed its lulling charities.
Then save me, or the passed day will shine
Upon my pillow, breeding many woes,—
      Save me from curious Conscience, that still lords
Its strength for darkness, burrowing like a mole;
      Turn the key deftly in the oiled wards,
And seal the hushed Casket of my Soul.

(*) Up to this point, the text is copied from my Facebook status.

From Denial to Acceptance?

acceptance is keySlowly but surely, cancer is chipping away at my dignity, my autonomy, my self-image.

Last week I agreed to my oncologist’s suggestion of treating my apparent depression and anxiety disorders as a quality of life issue, and accepted my GP’s prescription of an SNRI. I know that objectively that was a good decision. I know that this is one way of taking care of myself and being sure that my needs are met.

Nevertheless, it feels like humiliation. I wrote about that recently, so I won’t repeat myself here.

Back to pain management, a quality of life issue par excellence. For a year or so now I’ve been white-knuckling, trying to avoid taking the narcotic pain relievers and when I eventually do take them, I’ve been taking minuscule doses that have little or no therapeutic effect. It’s not like I don’t know that; I’m reasonably conversant with these dosages.

As I’ve written before (as in this post from about nine months ago), my issues with narcotics are dual. On the one hand, I hate the way they make me feel. I hate that sleepy-dopey feeling, the impaired judgment, the excessive emotionalism, the lack of impulse control, the inability to do things that have to be done. I live alone. I have a house to maintain. After requiring my medical retirement, my employer was kind enough to give me alternative employment that I can do at home when I’m up to it. That has to get done if I want to keep getting a paycheck.

The other issue with narcotics is that I’m mildly allergic to them. My whole body starts itching, inside and out, and so I have to take an antihistamine at the same time as the narcotic. Antihistamines feel yucky, too.

So the decision for me involves balancing two elements. Which will be worse at any given moment: the narcotic-antihistamine impairment and discomfort or the unmanaged pain?

Last night I realized that (yet again) I’ve been an idiot, that my pride and self-will, my “machisma” has been causing me to make really bad decisions. I took a ridiculously tiny dose of Percoset last night and not surprisingly was up pretty much the whole night in pain.

So, a bit more of my self-image crumbled away last night. My image of myself as strong in body, mind and will, as a person who copes, a person who is in control… *poof*. I need to find a new base to stand on, and I’m going to try to start thinking of myself as a person who does whatever is necessary to take care of herself, even when that means adjusting long-held ideas and values.

Reality changes. Fundamental human values, in my opinion, do not change, but other kinds of ideas do. It is time for me to adjust the way I gauge my personal strength. It is time for me to step out of these last tattered remnants of denial and squarely face the reality of where I am with this disease.

I have metastatic breast cancer. I will never be healthy again. My pain and disability will increase. That is reality plain and simple, and as I wrote in a post about another issue:

Accepting an unpleasant or bad situation – war or abuse or cancer, for instance – doesn’t mean that I endorse it or like it. It just means that I have looked at reality and noticed that it is real. Not accepting reality is fairly insane. I can’t even work to change something until I have noticed and accepted that it is real.

At the same time, I am still the same person I was before diagnosis. I am still bright, I still have talents, I still have the ability to love and be loved, the ability to work effectively. The disease has not yet taken everything from me, and I still have the ability to cook, to watch movies, to read or listen to books, to be in touch with friends, to tell abysmal jokes, to help others and be helped by them. I can be grateful for these things while still acknowledging the devastation my disease has wrought.

It’s not going to be easy, but I’m pretty sure that this what is the landscape of the next part of my journey will look like.

Pain is in the brain

This image shows regions of the "neurologic pain signature," a standard map that can be applied to individuals who may be feeling pain. The map was developed based on heat pain applied to participants' forearms. Activity in yellow areas is predictive of higher levels of pain, and activity in blue areas is predictive of lower levels. (Photo: Tor Wager, University of Colorado, Boulder, via AP)

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 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.

The humiliation of fatigue

534075_333017693444653_190895940_nOne of the neighbors around our central courtyard made some remarks the other day that caused me to feel terribly helpless and humiliated. He mentioned how he had heard how active I used to be, how well I kept my house and garden, how much work I did for the marginalized and weaker people in the community. “What happened,” he asked. “It’s not good for you to be so inactive. Just do a little at a time and you’ll get your strength back.”

My neighbor knows I have terminal cancer. He knows that my world has become very small. He knows how sick I am… but he doesn’t get it. He is one of the many people who see cancer fatigue but register it as laziness or depression or “playing the cancer card”.

Don’t they know how much I want to be active again?

Today I changed the linens on my bed. It took an hour and I had to take a rest before doing the last pillow because I was not only exhausted, but out of breath. This is not fun, people. I love a clean house, a spotlessly clean house. I can’t have it now because I have to depend on other people to do the heavy work for me – and most of it counts as heavy work for me now. For the pittance I can afford to pay, I cannot require that they clean to my standards, just to “regular clean house” standards.

Not only can I not expect to be completely pain free for the rest of my life in the physical sense, I can expect to have a certain degree of emotional pain, too. I’ve written at length about how I deal with feelings that I don’t like. It works. But sometimes I wish with every fiber of my being that I didn’t have to deal with all this.

“Why me,” cried the woman, in honest desperation.

“Why not,” came the reply.

I do my best not to spend my limited energy reserves on nonsense, not to waste time howling at the moon–except when a good old-fashioned howl is what I need to free myself so I can get up and keep going. Today is a howling at the moon kind of day.

And so, dear friend across the courtyard, this is what I want you to know. Fatigue is real, even though you cannot see its stigmata on my skin. I am frustrated enough that I cannot do everything I’d like to do, and humiliated enough at the state of my house and garden without you pointing it out to me. I am doing everything I can possibly do, and probably a little bit more than that.

Moreover, I do not have to justify myself to you any more than you have to explain  yourself to me. I know that you mean well and would never have intentionally hurt my feelings. But please just keep your mouth shut and your suggestions to yourself. Give thanks to God that you don’t know or completely understand what I am experiencing, and continue to be the friendly neighbor you have always been, respecting our mutual boundaries.

Thank you.

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.

—–

(*) 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.)

Despair and Hope

As voluble as our generations are when talking about our feelings, we didn’t invent that kind of emotional transparency. In fact, I sometimes think that earlier generations were more creative about it, particularly the poets.

It’s pretty obvious to anyone who looks at my poetry posts, that Emily Dickinson is one of my favorites. Feminine, independent, strong, emotional, spiritual, clever and intelligent – few poets touch me as she does and has done since I first read her when I was a child. Each of these poems expresses a state of being that is opposed to, yet intimately connected, with the other.

First, “It was not death, for I stood up” (355):

It was not Death, for I stood up,
And all the Dead, lie down –
It was not Night, for all the Bells
Put out their Tongues, for Noon.
 
It was not Frost, for on my Flesh
I felt Siroccos – crawl –
Nor Fire – for just my marble feet
Could keep a Chancel, cool –
 
And yet, it tasted, like them all,
The Figures I have seen
Set orderly, for Burial
Reminded me, of mine –
 
As if my life were shaven,
And fitted to a frame,
And could not breathe without a key,
And ’twas like Midnight, some –
 
When everything that ticked – has stopped –
And space stares – all around –
Or Grisly frosts – first Autumn morns,
Repeal the Beating Ground –
 
But most, like Chaos – Stopless – cool –
Without a Chance, or spar –
Or even a Report of Land –
To justify – Despair.

….

And then, the better known “Hope is the thing with feathers”(254):

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
 
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
 
I’ve heard it in the chillest land
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Chemo Brain

Chemo Brain. So many of us (maybe even most of us) have gone through it, and some of us – like me – never get rid of it. The words that used to be there but aren’t any more. The inability to give clear directions over a route you know well or to negotiate obstacles without bumping into them. Forgetfulness. Even trouble gluing together a broken plate.

I have been telling my doctors about my problems for years. They don’t pay attention. The most troubling issue to me is not being able to find words. I am a writer and translator; words are my tools. If I can’t find my tools I can’t work. But the doctors don’t take me seriously. One friend has suggested that because I use words professionally my baseline function may be such that a deficit is simply not recognized in the casual attention of a twenty minute oncology appointment or seven minutes with the GP.

The results of what is described as a “large meta-analysis” were published in a September 4th press release by the Moffitt Cancer Center and reported in the print and online media. I’ve waited two weeks to write about it because I was so annoyed. I was annoyed because I’ve been told that I was imagining the deficits or that they are just part of aging (I am fifty-seven, for goodness sake, not eighty-seven!) or some sort of middle-aged lady hypochondria (“To be expected, dear, after what you’ve been through”). No one took me seriously enough to refer me to neuropsychological testing. The condescending responses to my complaints were sufficient to stop me from pushing the point or from pursuing testing through my own connections. My name is Knot Telling and I am a wimp.

According to the press release,

“Our analysis indicated that patients previously treated with chemotherapy performed significantly worse on tests of verbal ability than individuals without cancer,” noted co-author Paul B. Jacobsen, Moffitt senior member and associate center director of Population Sciences. “In addition, patients treated with chemotherapy performed significantly worse on tests of visuospatial ability than patients who had not had chemotherapy.”

“Breast cancer patients treated with chemotherapy who have subsequent cognitive deficits should be referred to a neuropsychologist for evaluation and management of the deficits,” Jim said. “Management usually involves developing an awareness of the situations in which their cognitive difficulties are likely to arise so that they can come up with strategies to compensate. Research shows that such strategies can make a big difference in daily life when cognitive difficulties do arise.”

So it looks as though even if I had been taken seriously and given an official diagnosis, there would not have been any real change. I would still be dependent on management strategies, probably pretty much the same ones I use now. It is painful, though. I am diminished. This is more of the “we had to poison you in order to heal you” story that is cancer treatment as I experience it. Would it have been less painful if I had been advised of this possibility in advance?

To tell the truth, I’m not sure it would.

“If pain for peace prepares” Interpreted

On September 11th I posted a poem by Emily Dickinson, If pain for peace prepares. Several people found it pretty impenetrable and let me know in the comments or by email and telephone, so I thought I’d post my interpretation of the poem to see if that helps at all. Please let me know in the comments if you understand it differently. That would make for an interesting discussion. I’ll start by paraphrasing the poem.

If pain for peace prepares
Lo, what “Augustan” years
Our feet await! 

If the experience of pain prepares us for the experience of peace, then in the future a time of peaceful contemplation is awaiting us.

If springs from winter rise,
Can the Anemones
Be reckoned up?

If winter gives way to spring, then the flowers will be to numerous to count.

If night stands fast — then noon
To gird us for the sun,
What gaze!

If the darkness of the night is preparing our vision so that we can can behold the sun, what a sight it will be…

When from a thousand skies
On our developed eyes
Noons blaze!

… when our well prepared  eyes behold the light of a thousand suns in a thousand skies.

In other words, I read this poem as a declaration of hope and a call for patience in suffering, as a statement of belief that just as shadows define light, as white space and margins define a page, pain and suffering allow us to fully experience peace and joy.

Dickinson employs a strong rhythm in this poem (without slavishly holding to it ), something she does not always do. In each of the stanzas the first two lines are more or less rhythmic, suggesting movement to me, and the third line consists of two equally stressed syllables (again, without strict adherence).

Da DUM da DUM da DUM
Da DUM da DUM da DUM
BAM BAM

(One of the things I love about her is her refusal to allow rhyme or rhythm to force themselves on the words and meaning, thereby not allowing us to be lulled by repetition but surprising us and keeping our attention engaged.)

On a “macro” level, the level I was intending when I chose to post the poem on the anniversary of the worst terrorist strike the United States has ever known, the poem suggests a way of marking the pain, shock and horror of that day with a view to the future – the idea that calm follows a storm, that a field must be plowed and disturbed in order to be planted and produce its fruits, that the pain of childbirth ends with the limitless possibilities of a new life entering the world.

On the individual level, this poem is very encouraging to me. Without too much gooey sentimentality (I don’t take to that very well) it reminds me that my physical, emotional or spiritual pain are limited. That the pain will give way to much more than absence of pain. It will open in the way a beautiful flower opens from a bud to reveal something very different, something wonderful.

Pain and suffering are never the end of the story.

If pain for peace prepares

Today, the eleventh of September, 2012, I offer this poem by Emily Dickinson, written in 1860 and published posthumously in 1924.

If pain for peace prepares
Lo, what “Augustan” years
Our feet await! 
 
If springs from winter rise,
Can the Anemones
Be reckoned up?
 
If night stands fast — then noon
To gird us for the sun,
What gaze!
 
When from a thousand skies
On our developed eyes
Noons blaze!