Chronically terminal rumination

 Last week I published a post about ways of referring to people with cancer at different phases of the disease (Cancer Words), mostly based on an article and a letter in the Journal of Clinical Oncology. (The link will take you to a Medscape Nurses review of the discussion.)

You know how a cow chews her cud? (Bear with me here.) She ingests her food and it goes into the first part of her alimentary canal, the rumen. Then she regurgitates the partially digested food and chews it up some more. This is called chewing her cud, and it is the characteristic of animals we class as ruminants.

Now then. This should make it clear that ruminating is not unlike throwing up a little in your mouth, an unpleasantness I try to avoid. On the other hand, some concepts do bear more than just passing consideration, and how to refer to my disease is one such. (Okay, at this point I should probably let you all know that I’m writing this post while under the influence of oxycodone. Keep up with the drivel, and we’ll ultimately get somewhere together.)

My problem with the terminology can be summed up like this:

  • I am not a survivor. I haven’t died of cancer, but there are secondary tumors at various places in my body. Active cancer.
  • I am not terminally ill. That is, I am terminally ill, but not in the sense of qualifying for hospice at this point.
  • I am chronically ill, but not in the sense of someone who has schizophrenia or diabetes or hypertension, in that I will eventually die of this chronic illness, God willing.

(“God willing” meaning that I’ll die of cancer unless  a war or terrorist attack or something, which is not all that unlikely around here, kills me first. Or the end of the world. Whatever. The point is, I’d rather live out the span allowed me, even with chronically terminal or terminally chronic cancer.)

In a very real sense, I am Living in an Undefined Space. I often say I am living with cancer, but cancer does not play well with others and is not a good roommate. I wrote about this in one of my very first posts, Have I survived yet? At that time, I wrote:

Living with doesn’t always mean “liking” or even “getting along”. Successfully living with a spouse or a roommate or in a family means respecting each other’s personal space, not impinging on their rights, not imposing our own will on the other one without their consent. Sometimes it means speaking up, protecting our space and our rights because the other one doesn’t respect them. I didn’t invite cancer into my life, but in it came. Cancer is not good at sharing space, does not play well with others. Okay, then. That’s a reality I have to deal with. Cancer and I are living in the same body now, so how can we do that successfully?

Over a year and a half later, I can say two things with certainty:

I am still alive. (Yay!)

I still don’t have the answer.

Fundamentally happy

October being Anniversary Month, I am republishing some of my favorite posts. This one seems appropriate after my drama queenery of last week. It was originally posted on January 25th of this year. I chose it because it’s always good to remind myself that I am in charge of deciding where to put my attention. Thank you for reading.

Today I read a post called “Pigeons” in one of my regular blog-reads, Table for One by Solitary Diner. I stopped short at this:

But as I thought about it, I realized that despite having a long list of potential self improvement projects, I am fundamentally happy.  Not all the time, certainly not at 4 am on a night float shift when I want to toss my pager into the fires of Mordor, but overall I’m happy.  And with very good reason.  Balancing out my list of pigeons of discontent is a very long list of things to be happy about. 

And I thought – hey, me too! I am fundamentally happy. My next thought was – When did that happen? Without going into a lot of detail, I can say that I have had a lot of pain in my life. I’ve lost people I love; I’ve been betrayed by people I trusted unconditionally. I have experienced catastrophic illness in my loved ones and in myself. I have been in material need. I have been in spiritual desolation. I have borne intense physical and emotional pain. Somewhere along the line, though, I slowly came to the deep realization that even though I cannot always control what happens to me, I can control how I relate to it. Even though I cannot control what feelings come up in me spontaneously, I can choose which ones to allow to stay. I can choose how I react to situations and feelings. “Feelings are not objective reality; they are our subjective reactions to objective reality.”

Ten or fifteen years ago I decided to make being kind to people my default mode of behavior. Aside from the positive results one might expect – more friends, people enjoying my company, better relationships in work and private lives – I noticed my inner world changing, too. As I began to be gentler with the people around me, I somehow started to become gentler with myself.

A few years after that, I began to realize that “feelings are not the boss of me”. I can feel like moldy bread warmed up on a rusty shovel over a cow dung fire and still smile at the person who comes into the room. I discovered that I am not unidimensional or monotonal and that I can feel sad about something, can feel grief and pain, and be honest about those feelings without letting them take over my essential being. My fundamental happiness takes nothing away from being sad or angry at a person or a situation, and the sadness or anger do not destroy the fundamental contentment.

I am a deeply spiritual and religious woman with an intense prayer life. This, I have no doubt, plays an important role in my fundamental happiness. My Creator created me as a human being with emotions, “and He saw that it was good”. I am grateful for the ability to feel emotions, because I have also known the flat, internal deadness of depression. But just as I do not have to allow myself to be ruled by my appetite for food or sex or exciting adventures, I do not have to allow myself to be ruled by my feelings.

Just as I choose to “live with” cancer, I choose to live with my feelings, knowing that they come and go, ripples on the pond of my contentment.

In the 13th century, Clare of Assisi wrote to Ermentrude of Bruge:

Our labor here is brief, the reward eternal; may the excitements of the world, fleeing like a shadow, not disturb you. […] Gladly endure whatever goes against you and do not let your good fortunes lift you up: for these things destroy faith and those demand it.

Living intentionally and being the master of our feelings are far from new ideas. Having found my center, my fundamental happiness, I can afford to take a couple of steps back from the “excitements” of my inner world and decide where to place my energy.

I have no idea if I’ve made any sense in this post. I’d be grateful for some feedback.

Have I survived yet? Part I (October Repeat)

October being Anniversary Month, I am republishing some of my favorite posts. Today’s is the first of two posts that attempt to explain my attitude to the cancer and why I choose to say that I am “living with” cancer; I am not fighting it or suffering from it, and I haven’t survived it. The second part is here. Thank you for reading.

This is not a cancer blog; it’s a blog about my life. My life is about flowers and lace and words and languages. It is also about having only one breast and limited use of one arm, about periodically going to a place where they inject deadly poisons into my veins. Remember “We had to destroy the village in order to save it”? (See Ben Tre if you are too young to remember or old enough to have forgotten.) They had to mutilate my body in order to save it. They have to poison me in order to heal me.

Once again, my life is about mysteries and contradictions, about thread wrapped around air.

The vocabulary of cancer treatment is often very violent. We fight the disease, we kill the wildly proliferating cells, we destroy the tumor, we wipe it out. I hate that approach. It is completely foreign to my core values, to how I try to live.  I try not to use those words. I prefer to say that I am living with cancer. When I want to be French and Franciscan and whimsical, I even talk about frère cancer, borrowing a page from Francis of Assisi who wrote about “our sister bodily death” in the Canticle of the Sun.

I don’t use the vocabulary of war in talking about cancer because war has a winner and a loser and no one knows which side is which until the dust clears. I prefer the language of coexistence: living with. The cancer and I share space. That doesn’t mean I don’t treat the disease, and I’d have infinitely preferred not to have to share, but it does mean that I do not invest my mental, emotional and spiritual energy in battle and thoughts of destruction.

Our words inform our thoughts, and our thoughts shape our experience of reality.

Living with doesn’t always mean “liking” or even “getting along”. Successfully living with a spouse or a roommate or in a family means respecting each other’s personal space, not impinging on their rights, not imposing our own will on the other one without their consent. Sometimes it means speaking up, protecting our space and our rights because the other one doesn’t respect them. I didn’t invite cancer into my life, but in it came. Cancer is not good at sharing space, does not play well with others. Okay, then. That’s a reality I have to deal with. Cancer and I are living in the same body now, so how can we do that successfully?

(I would like to thank Dr. Elaine Schattner, @medicallessonsauthor of http://www.medicallessons.net/ for the original inspiration for this post.)

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.

Love and longing

Changing the tone a little bit today, I’d like to share Poem XXVI from A.E. Housman’s The Shropshire Lad. The gentle rhythm and straightforward rhymes belie the complexity of the underlying emotions.

I’d love to hear your reactions.

The half-moon westers low, my love,
And the wind brings up the rain;
And wide apart lie we, my love,
And seas between the twain.
 
I know not if it rains, my love,
In the land where you do lie;
And oh, so sound you sleep, my love,
You know no more than I.

It’s not all about cancer – except when it is

Full disclosure. I live with cancer. I hate that I live with cancer. Cancer and I may have reached a delicately balanced modus vivendi, but cancer still scares me.

I have mets (metastasis, secondary tumors) in my bones, but the last chemo series greatly reduced them and I am pretty comfortable at the moment. Bone metastasis doesn’t scare me that much, probably because 1) pain control is available and effective and 2) I already have it, so I know what it’s like. What terrifies me is the possiblity of it spreading to the brain.

I am so afraid that I will lose my independence, that I’ll lose my sense of self, that I’ll need to be “managed” and “cared for” and “protected”. The possibility terrifies me.

Most of the time, the terror  subsides to a low-level, fairly constant background anxiety. If I forget my keys, I worry about my memory. If I forget someone’s name, don’t recognize a face, if I have trouble with an arithmetical calculation. If I can’t think of a word or the name of something I am looking at, I panic. And if I notice that I am unusually joyful or unusually angry or unusually into shopping and spending money, or unusually fixated on an idea or an activity… I go ballistic. Is my mind going? Has the disease reached my brain? Am I on my way to being tied into a wheelchair and parked in front of some dayroom television?

Yes, I know this is over the top. I slow my breathing, focus on tangible, material things. Here and now, I feel my breathing. Here and now I feel the chair under me. Here and now I see my magnificent peace lily. Its large leaves and pale flowers calm me. Here and now, I am aware, awake, competent. And I calm myself.

Sometimes I feel like going to the oncologist and asking for a brain scan because of some new behavior that might indicate a personality change that could be a symptom of a tumor in one or another part of my brain. But I feel like an idiot, so I don’t ask. These sporadic fears and anxieties embarrass me.  I take them as a sign that the cancer is winning this emotional war of attrition. (You see? Sometimes even I use the bellicose metaphors in talking about cancer.)

I use Occam’s razor a lot. Remember that? The idea is that if there are two possible reasons for something, the simpler reason is the more probable. If I am suddenly obsessed by shopping, spending money, thinking about buying things, fantasizing about what I would do with my new purchases (and this is out of character for me), that might be a tumor-related personality change. It might also be a reaction to anxiety. The simpler and more common explanation is that I am anxious around certain issues in my life. God knows I have plenty of that – and some of it doesn’t even have to do with cancer.

So I take measures to reduce my anxiety, and the shopping obsession gets back to reasonable proportions, thus proving the anxiety theory. And I can relax again until the next time.

Wednesday Video: Stephen Fry Kinetic Typography

A wonderful video by Australian graphic artist and web designer Matt Rogers at Rogers Creations, making delightful, creative use of a text written and spoken by Stephen Fry. Is it a rant? Is it a plea for sanity?

It is certainly a delicious interlude for eyes and ears and mind.

Have I survived yet? Part II

Yesterday I wrote “Our words inform our thoughts, and our thoughts shape our experience of reality.” That’s not an original idea. Theories about linguistic relativity have been around for over a hundred years. A thinker who formulated similar ideas in a way that is closer to what I mean was Victor Frankl. In Man’s Search for Meaning he wrote:

We who lived in the concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms — to choose one’s attitude in any given set of circumstances, to choose one’s own way.

“The last of human freedoms – to choose one’s attitude in any given set of circumstances” is not so easy to exercise. Even in my situation, which is in no way comparable to what Frankl and others went through in the concentration camps, it is hard. “Attitude” is such an abstract concept. I don’t know how to change something that I cannot touch or even adequately define, so I go about it through the side door. I change the way I talk about a situation in order to change the way I think about it, and somewhere in there that thing called “my attitude” changes, too.

Yesterday I wrote that I don’t like to use the violent, militaristic vocabulary of cancer treatment. Those words are inextricably tied to violent, militaristic thoughts. I know that many people who have cancer direct most or all of their thoughts and energy to fighting the disease. It’s not up to me to comment on their choice, but it is not my choice. I choose not to have my internal energies directed to fighting a war, with the implication that one side or the other, me or the cancer, will be defeated. Will be destroyed by the other side.

I choose to direct my energies in a different direction, to living with the disease. This is very affirming for me in a number of ways. First of all, my energies are directed to living. The quality of my life, the content of my life, the choices of my life are at the top of my priorities. The cancer is relegated to an inferior place. I pay attention to it only when it starts impinging on my choice for life and then I take appropriate measures. The cancer does not have control of my life – I do.

With the quality of my life being my top priority, I naturally look at ways to improve it. I look at my diet, my exercise, my meditation, my work, my play, my relationships… I look at these things as partners in living, not as allies in war. Does it make a difference to my recovery? I don’t know. Does it make a difference to how comfortable I am in my skin? Absolutely.

But it also raises another question. It is usual to talk about “cancer survivors”. People survive war, natural disaster, physical and psychological trauma. No one survives life. (Yes, that’s a joke. It’s okay to laugh.) So tell me: Have I survived yet?

Have I survived yet? Part I

This is not a cancer blog; it’s a blog about my life. My life is about flowers and lace and words and languages. It is also about having only one breast and limited use of one arm, about periodically going to a place where they inject deadly poisons into my veins. Remember “We had to destroy the village in order to save it”? (See Ben Tre if you are too young to remember or old enough to have forgotten.) They had to mutilate my body in order to save it. They have to poison me in order to heal me.

Once again, my life is about mysteries and contradictions, about thread wrapped around air.

The vocabulary of cancer treatment is often very violent. We fight the disease, we kill the wildly proliferating cells, we destroy the tumor, we wipe it out. I hate that approach. It is completely foreign to my core values, to how I try to live.  I try not to use those words. I prefer to say that I am living with cancer. When I want to be French and Franciscan and whimsical, I even talk about frère cancer, borrowing a page from Francis of Assisi who wrote about “our sister bodily death” in the Canticle of the Sun.

I don’t use the vocabulary of war in talking about cancer because war has a winner and a loser and no one knows which side is which until the dust clears. I prefer the language of coexistence: living with. The cancer and I share space. That doesn’t mean I don’t treat the disease, and I’d have infinitely preferred not to have to share, but it does mean that I do not invest my mental, emotional and spiritual energy in battle and thoughts of destruction.

Our words inform our thoughts, and our thoughts shape our experience of reality.

Living with doesn’t always mean “liking” or even “getting along”. Successfully living with a spouse or a roommate or in a family means respecting each other’s personal space, not impinging on their rights, not imposing our own will on the other one without their consent. Sometimes it means speaking up, protecting our space and our rights because the other one doesn’t respect them. I didn’t invite cancer into my life, but in it came. Cancer is not good at sharing space, does not play well with others. Okay, then. That’s a reality I have to deal with. Cancer and I are living in the same body now, so how can we do that successfully?

(I would like to thank Dr. Elaine Schattner, @medicallessonsauthor of http://www.medicallessons.net/ for the inspiration for this post.)