Isolation

Different!Last week I posted The Electrician Didn’t Come, in which I rambled on about nothing in particular for 600 words. I asked if anyone had a suggestion for a topic for future posts. In the comments, MC wrote:

Not to be maudlin, but I would love to hear about how you avoid becoming isolated – like I wonder if support groups and that sort of thing really help. To me, it is like getting sucked into a cesspool and running out of arms reaching down to pull you up. Or mabe you are just more resilient because of the tool chest of coping mechanisms you learned as a therapist? Also, is the medical system there a lot different than in the US? Your entries are very encouraging and uplifting, by the way so thanks. 

There are a few interesting topics there, so thank you very much, MC!

Isolation is a big problem for the subset of people with serious disease who live alone. My friend and fellow blogger Scorchy Barrington recently wrote an incredible post about her experience being alone in an emergency room. If you haven’t read it yet, please do.

In my own experience, it’s important to differentiate being alone from being isolated. I love being alone and even before I became so ill I chose to live a relatively solitary life for spiritual reasons, as well as due to my natural inclinations. However, I still left home for work, worship and occasionally to see friends. There were usually just a day or two in a week that I was really alone at home.

At the end of 2011 my neutrophil count (a type of white blood cell) became severely low due to chemotherapy. This kind of side effect is usually self-limiting and/or corrected with injections of granulocyte-colony stimulating factor. In my case, however, it never did correct and I now have to be very, very cautious about exposure to infection. Since my job involved contact with a lot of people from many different places, my employer very graciously changed my duties and allowed me to work from home.

As I became more ill I became less able to perform even those tasks and the organization I work for gave me a completely different job that could be performed from home on my own time schedule, working around my good and bad days. I’m very grateful for that.

The upshot is that I am home alone most of the time now. I would not say that I am isolated because there is someone who comes to do the heavy cleaning, someone else who has my prescriptions filled and runs little errands, and a neighbor across the courtyard who frequently invites me for a meal. In fact, I am quite fortunate in that regard. But even so, my main outside contact now is online.

There are lots and lots of online resources for the homebound these days. Besides blogging, Facebook and Twitter, there are specialized groups and forums for cancer in general, breast cancer specifically, and metastatic breast cancer even more specifically. I have made friends and found soul mates online.  With such real, intimate contact so easily available to those who have Internet capability, isolation is far from inevitable.

To answer the more specific part of MC’s question (“…like I wonder if support groups and that sort of thing really help. To me, it is like getting sucked into a cesspool and running out of arms reaching down to pull you up.) Support groups have definitely helped me at various times. As well as being a ready-made peer group, they are also a way to meet people who  have been through what you are experiencing. As I got to know the people, I was able to to discern which of them were more like me and which were not. I was able to make friends from among the peoknow what youple I met and learn how to respectfully keep my distance from some others. In that respect it’s no different from any other social setting, really.

Serious illness can easily feel “like getting sucked into a cesspool”; I get that. You will never hear me refer to cancer as a blessing or a gift or a good thing. It sucks. But that does not mean I cannot use the experience to learn and to grow. It’s largely a question of balance and attitude, I believe. I wrote a little about that in one of my earliest posts, Fundamentally Happy. Even though I am much sicker now than I was then, it still rings true to my ear.

Reading what I just wrote has inspired me to add a page of online resources to Telling Knots. Look for it in the next day or two. If you have a favorite resource, please mention it in the comments.

I’m not ready to die!

Hanging onI’ve written a few posts about acceptance. I sure hope I wasn’t too smug because warmed-up words are not a very tasty meal.

It hit me suddenly today – I’ll be fifty-eight in two days. Will I live to see my next birthday? There is a good chance that I will not. The odds that I’ll reach the age of sixty are minuscule.

I’m crying while I write this. I’m not ready to die yet. I wrote about it in my recent post Saying Goodbye Without Leaving:

The thing is, I am not ready to die. I love being alive, even with all the restrictions that are now my lot. I don’t know how to deal with this and it often makes me cry.

[…]

I don’t like that I am going to die, and I am not ready to die, but I know that I am going to die. I can only hope and pray that as my death approaches and becomes more immediate (unmediated by time) that I will be able to live each day with faith and courage, grace and humor to the last.

I want to write, don’t know what to write. The last couple of days, I’ve been sort of frantically active, within my limitations. This is a warning sign for me, a cue that I am avoiding difficult emotions. Wisely or unwisely, I looked within and saw…

I’m not sure what I saw. Not darkness – my fundamental happiness has not departed. Not despair – my God will not desert me. Not loneliness – I am fortunate in being surrounded by loving friends. So what is it?

Regrets? No, the only thing I regret in life is an unhealed relationship with a family member. I know that I’ve done all I can in that regard, so I quietly leave it in the hands of my relative and God. As I wrote a couple of weeks ago in Bucket List, I’ve had a good life.

I’m beginning to ask myself how much of this sadness is a control issue. I am a controlling person. I pay attention to detail and like to have my hand on everything going. As I get closer to death, my body compels me to start letting go of more and more. For example, my home isn’t as clean as I’d like (even though the Young Man Who Helps does very good work). I used to be very house proud; it’s hard to let go of this.

My house is just a symbol, of course. It’s not the grubby back door handle that is bothering me. It’s the letting go, letting go, the continuous letting go of life.

I’m not ready yet. How do you get ready to die when life is so good?

Another Level of Acceptance, by Scorchy Barrington. A guest post.

Scorchy Barrington is the intelligent, articulate, funny author of The Sarcastic Boob and is also active in the #bcsm (breast cancer social media) community on Twitter and Facebook. Her posts cover a lot of territory and are always well-written and a pleasure to read.

In “Another Level of Acceptance”, which appeared on her blog on 9 January 2013, Scorchy addresses an issue that all mets-ers have to work out – living in sure knowledge of the reality of approaching death. I am grateful for her permission to repost it here.

All things considered, I think I’ve accepted my diagnosis of metastatic breast cancer rather well.  I mean, I haven’t been walking around in denial (and never had a denial phase, to tell you the truth).  I’ve taken a very matter-of-fact approach to it; neither am I unrealistically optimistic nor am I fatally pessimistic.  It is what it is.

And while I haven’t been dramatic in my approach to it all, there have been those moments of all-too-real clarity when I say to myself  “I am dying.”   Those stark moments come and go and I think I deal with them as well as I can expect.  But recently I read a book that shook me a bit:  Dying in Public: Living with Metastatic Breast Cancer by Sue Hendler.  Hendler was a university professor at Queen’s University, Kingston, Ontario, Canada.  She found a lump in her breast in the summer of 2007 and then shared her experiences along the way in a newspaper column for the Whig-Standard in Kingston, Ontario.  The book is a compilation of those columns and some unpublished work.

There was nothing particularly new in the book.  That is to say, there weren’t any breakthrough treatment options and no particularly inspiring moments that were on par with a fireworks display (for me anyway).  But it shook me because I can relate so closely with Sue.  An educator who loved her students, she wrote about her experiences and connected with many people.  She, too, faced her disease with an apparent matter-of-fact practicality.  And while she doesn’t seem to have been unrealistically optimistic, she certainly looked forward to living at least a decade into the future.

We folks with metastatic disease get the whole median prognosis thing.  2.5-3 years from diagnosis,  meaning about half die before, and about half die after.  Now let’s translate that sentence into a graph.

Capture

Schematic depiction of breast cancer survival times. From Dying in Public: Living with Metastatic Breast Cancer. Michael Grass House: Kingston, Ontario (2012): p. 112.

“The number three still floats around in my head,” wrote Sue.  “But with time, I’ve realized that it is a statistic.  and only a statistic . . . And, even with the recent news of the spread of my cancer, I will continue to hope to live–and live well–into the right-hand tail of the curve.”  (112)

Sue died one year later.

There is so much uncertainty in this sick game.  Cancer doesn’t give a damn that my mother has already experienced the death of one child and couldn’t bear to go through this again.  It doesn’t give any quarter to my sister who tells me, “I know you’ll get better.”  It flips the bird at twenty years of hard work to achieve the career success that I have.  And it smirks as I try to put the whole experience in perspective and make plans to deal with it.

One approach Sue took to the reality of a shortened life is to make a list of things she would never do.  In it she included things like be in a committed relationship, finish a book she was writing on the history of women, sort all of the paper in her office, do a chin up, and (my favorite) “Figure certain people in my life out.  Not going to happen.  Doesn’t matter how many lifetimes.  Some people are just too fucked up.” (116)

What is it John Lennon was to have said: “Life is what happens while you’re making plans”?

Looking at that schematic is not easy.  Indeed, how can you confidently make plans when you don’t even know if you’ll have time to plan in the first place?

The answer, of course, is to just keep going.  What the hell choice do we have?

I hate feeling like this

Sometimes I just can’t tell the difference between being in touch with my feelings and expressing them appropriately – or playing the Stage IV card and milking it for all it’s worth. I’m having a rotten week or so and you, Internet, are the lucky puppy who gets to hear all about it.

First of all someone I care about a great deal is going through a terrible life-changing passage right now and I can’t do anything to help. That makes me feel helpless as well grieving for the losses in my friend’s life.

Next. Remember my friend who was found dead, murdered, in his home? I have had to be involved in some of the settling of his affairs because I was listed as next of kin. This week I had to pay a large bill to the water company for water usage after his death. The company does not care that he is dead and the flat is empty and doesn’t belong to me. They dunned me anyway. (My lawyer is on it.) This added to my feelings of impotence and frustration and grief.

Then there’s been my health. Mundane little health things, not cancer. I had a little bit of a fever (which is an issue because of the low neutrophil count) and stomach problems. I stumbled and hurt (fractured?) another toe. My chronic cough worsened (probably because of staying in bed with the fever). Nothing dramatic, just enough to make me feel like something you’d scrape off the bottom of your shoe. The stupid toe hurts and so do various other joints. The weather’s changing and I’m not twenty anymore.

And the pain, of course. (We’re on to the cancer now, if you’re playing along at home.) The bone pain is increasing to the point where I don’t know how much longer I’ll be able to cope without narcotics. I’m taking maximum daily doses of Advil supplemented with something called Tramadex (known as Tramadol in the US). It is a very weak  μ-opioid receptor agonist but provides pain relief similar to that of codeine, which I can’t take, and I don’t react to it badly as I do to stronger opioids. But I think I’m coming to the end of that road. Not sure what the next step will be.

What else is driving me nuts? Well, since you asked…

  • My house is not as clean (spotless) as I’d like it to be. I don’t have the strength or balance to do any more than I’m doing, and my household helper can only do so much in the hours I can afford to pay him.
  • My eyes are not as good as they used to be, which means that I have had to give up making lace. I still hope I’ll be able to take it up again, but the knitting I’m doing instead just isn’t the same. (Though it is very cool that I knitted my first pair of socks with a turned heel.)
  • My attention span is shorter and more variable than it used to be, which means I can do even less work than I used to do. Ditto my memory.

None of this is as bad as what many other people are dealing with – bringing us back to my drama queendom. I was hesitant about posting this for that very reason, but decided to go ahead. Why? Because when I started this blog I made a decision that I would be as honest and transparent as prudence allows, and that means sometimes showing these less attractive view of my life.

Thanks for being here.

It’s your own fault! (October Repeat)

October being Anniversary Month, I am republishing some of my favorite posts. This one is on a recurring theme. Thank you for reading.

“Didn’t you get regular check-ups? Is it in your family? Do you smoke? You bottle up your feelings too much and now your body is expressing them for you. You should meditate. You’re not eating properly. Did you or your parents ever have dealings with the occult? There must be some secret, unconfessed sin in your life. Why don’t you pray for healing? Don’t you have enough faith? Why did God do this to you?”

Every one of these comments was addressed to me by a friend or acquaintance shortly after I was diagnosed with cancer. At first I tried to reply politely: No, it’s not in my family, I don’t smoke, the people I live will be the first to tell you that I am not one to shy from expressing her feelings… and so on. After a while, I quit replying at all because I was not sure that I could do so politely. “Who do you think you are,” I wanted to scream. “Don’t you realize that these questions accuse me of giving myself cancer? You’re blaming me for being ill! I know your questions and comments are your way of expressing interest and concern, but why is it that you suddenly feel utterly free to make the most personal comments and speculate about the most intimate details of my spiritual life?”

I soon came to a different understanding of these intrusive and often insulting questions and comments. They are not so much about me, as they are about the person who is addressing me. We human beings are accustomed to having a certain amount of control over lives. Psychologists tell us that helplessness is the most difficult and painful of emotions. If I can point to a behavioral, environmental or spiritual factor in my neighbor’s catastrophic illness, then I can be reassured that I can avoid that illness by controlling those aspects of my behavior, environment and spiritual life. But if this terrible thing “just happened” to my friend, why it might “just happen” to me. And that would be intolerable.

When I was a teenager I was awakened early one morning by a serious earthquake. It was the scariest thing I had ever experienced: I put my foot down on the floor and the floor wasn’t there. The noise came from everywhere and nowhere. Terror. Sheer, visceral terror. The following days saw the aftershocks. I wasn’t alone in being paralyzed by fright by them, each as strong as another earthquake. Some psychologist came on TV or radio, I don’t remember, and suggested a way to cope with aftershock fear.

Get angry, he said. Stamp your foot, yell, command the earth to stop shaking! Our fear is sub-rational, he explained, based on our powerlessness in the situation. By acting as though we have power over the earthquake, we somehow trick those sub-rational parts of ourselves into believing that we actually have the power. Aftershocks last several seconds and stop, but our sub-rational being doesn’t know that. Hey! I commanded the earth to stop shaking and it did! I’m not a powerless victim; I can take control.

A similar mechanism is at play, I believe, when people try to find the cause of my cancer in something I could have controlled but didn’t. I think much the same sub-rational motivation lies at the heart of a great deal of victim-blaming behavior. She shouldn’t have worn her skirt so short. He shouldn’t have been out walking that late. She should have had an alarm system installed. He should have paid more attention. It’s their own fault. It couldn’t happen to me. I’m in control. I’m safe.

Surely there must be a way to make ourselves feel safe without resorting to blaming others.

Partial Results (Update 3)

Some of the results from the whole body scan are in. My lungs and liver are still cancer free! There is progression in the bone mets, but with the exception of one ambiguous finding the disease has not spread outside the skeleton. I am jazzed! I hadn’t realized how oppressive the stress and tension were until I got the news. I felt like I could breathe for the first time in a month.

I was posting my good news on a discussion board for people living with Stage IV breast cancer(1) and suddenly realized how odd it is to be happy that the cancer has “only” spread in my bones. Everything is relative, isn’t it? But there it is. Mets in the liver and lungs feel much more serious than mets in my bones. Yet when it first spread to my bones I was devastated. A large part of that is certainly the old saying “Better the devil you know than the devil you don’t”.

So, all in all, I am pleased and relieved. The situation hasn’t changed; my attitude has. How often I have to learn that lesson! It all goes back to those lines from Invictus:

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

As I wrote at the beginning of this year, I have a quirky interpretation of those lines.

I am living in circumstances I cannot change or control, but one power will never be taken from me: the power to choose how I deal with it. And the way I deal with circumstances of necessity changes the way they affect me. It is a dynamic relationship: by changing myself I have changed reality.

I didn’t take charge of the situation while I was stressed out, but I did recognize the change as soon as it happened, which is good. When I am working on changing myself (in this case, my tendency to catastrophize), I take a page from Skinner’s book and reward myself for successive approximations to the goal(2). Instead of getting down on myself for (yet again) allowing myself to be swept away by circumstance, I congratulate myself for recognizing my role in my own feelings as quickly as I did. I think I’ll make something special for my main meal to celebrate – and maybe even have coconut sorbet for dessert, even though it’s not Sunday!

Bottom line is that my disease has progressed, but not as badly as feared, and I still don’t know what the treatment will be or if I’ll have to have any biopsies. On the other hand, I’ve made strides in taking control of my inner world – and that is far more important.

Notes:

(1) An excellent site for people with breast cancer and those who are close to them, http://www.breastcancer.org/ offers great information as well as discussion boards for pretty much everyone touched by the disease.

(2) Wikipedia article on behavior “shaping” gives an idea of what I’m talking about. Click.

An Update

Repurposing
It’s good for the environment.

So. I was able to access the radiologist’s report from Tuesday’s bone scan. The good news – I didn’t have to wait until next week.

The “I’m too young for this” news – I may have hyperostosis frontalis, a common, benign condition seen in elderly females. Well! That is clearly a mistake. Elderly females, indeed. Harrumph, I say. Harrumph!

The news I’m putting off saying out loud – Looks like there is new mets in at least one spot (the sternoclavicular joint). The laconic language of the radiologist’s discussion was such that I am not sure about changes to the existing mets, and I’m not sure about how the scan relates to the skull findings on CT. I’m waiting to talk to my doctors about that.

In extreme stress I try to remember to do certain things.

  • Breathe. (Not as self-evident as one might think.)
  • Out with the bad, in with the good. (Pray. Talk about what I’m feeling. Accept advice and support from good friends and professionals.)
  • Do the next right thing. (Have and follow a plan of action. Review and change as required.)
  • Keep breathing.

The important thing is not to get ahead of myself. I’m not a physician, much less an oncologist. I have to take all my assumptions with a very large grain of salt until I’ve talk with someone knowledgeable. While it’s good to have a plan, I shouldn’t obsess over it until I have authoritative input.

I have a call into my GP, who has been walking with me through all of this from the beginning. I have some questions for him and I will ask him to guide me through the next steps. My oncologist is not available until October, so I am going to ask for his help with either getting me in sooner or maybe seeing someone else. I have a list of questions for her, the most important of which are 1) What is the statistical life expectancy and quality of life at my current stage of the disease? 2) What are the treatment options? For how long, and how will they affect my daily life? 3) What is the statistical life expectancy and quality of life if I have the treatment?

I am very aware that statistics don’t apply to individuals, but this will be more fodder for the decision-making mill. I will take the information with me and discuss it with several people who are important to me, including my spiritual advisor and a couple of very close friends. I will pray about it.

Then I will make a decision to have treatment or not. I have been living with cancer for eight years now. It is going to be a life-long relationship, obviously. “Brother Cancer” is not the companion I would have chosen. I don’t like him, but I am trying to live with him. The question I need to answer now is whether or not (following the images in the post I linked to) I should continue “standing up for my rights” or if the time has come for me to prepare to walk into the light, purposefully and with dignity.

Anxiety: A Paradox

Well, this is strange. In the weeks and days leading up to my recent CT, I was a quivering mess of anxiety and drama. I divided my time between obsessively cleaning my house and taking advantage of the kind and patient emotional support of my long-suffering friends. (You know who you are – thank you!)

Now here’s the thing. I had the scan two days ago, and I don’t have the results yet. I still don’t know if the mets has reached my brain, yet I am calm and focused. I banged out two translations in the last two days with no fuss and no muss, even though they were from my L4 to L1. This morning I quietly and easily did the usual morning things, and now I’m waiting for the grocery delivery and writing a self-indulgent, navel-gazing blog post.

What happened to the anxiety?

I don’t know any more about my health than I did last week. The scan itself wasn’t threatening or frightening, and I bypassed the tedious (and nervous-making) administrative hoops by paying for it out of pocket. (Relax, Americans. It is far less expensive in Israel than in the US.) Yet, now that it’s over, the anxiety has just dissipated like early morning mists in the light of day.

Thinking this over (or over-thinking this), I find myself remembering one of my favorite Psalms (131:1-2 NIV):

My heart is not proud, Lord,
my eyes are not haughty;
I do not concern myself with great matters
or things too wonderful for me.
But I have calmed and quieted myself,
I am like a weaned child with its mother;
like a weaned child I am content.

I wonder if, having done everything that is in my power to do in this scary situation, I have somehow “turned it over”, relaxed my white-knuckled hold on events and stepped back, “calmed and quieted myself” in this “great matter” of my health, my future.

I cannot control anything now. In a few days I’ll have the results of the test, and will be that much closer to knowing what’s going on with me. I’m not scared of cancer; we’ve been living together too long now for that. I am scared of losing my independence, my individuality, my identity. But somehow the truth that being anxious and dramatic will not shorten the time I have to wait for a diagnosis has pushed through the layers and layers of my psychological defenses and reached my core belief: God is good, and I am important to him.

As Julian of Norwich famously said, “All shall be well and all shall be well and all manner of thing shall be well.” I’ll close with that.

Apocaloptimists Unite!

I am essentially optimistic, a fundamentally happy person. Both statements are true. I am, however, not a bliss ninny. As I’ve said so often, accepting reality doesn’t necessarily mean liking it. As a relatively well-balanced person, I don’t pretend that I don’t feel sadness, frustration, fatigue. In fact, I’d go so far as to say that optimism and fundamental happiness cannot exist in a fantasy world, and it is only in fantasy that sadness, fatigue and frustration are absent. What keeps me optimistic and able to return to my baseline happiness is that I know the darkness is not the last word.

At the beginning of this year, I wrote:

It’s all about choice. Without choice, I feel helpless and depressed. With choice, I can decide not to concentrate on the ripples that disturb the water’s surface but instead turn my attention to the underlying serenity of the deep. I can choose to lean on the Rock from whom I draw strength. I can mourn my late friend and grieve over what was and what might have been while still living well. I can be sad without sadness taking over my life.

I can also choose to spend time looking at the ripples and being upset at the disturbed surface of the pond. It’s okay if I want to do that now, because I have remembered that it’s my choice.

And whatever I choose, it takes nothing away from the hard-won fundamental happiness of my being. It will still be there, whenever I choose to draw on it.

That basic belief, a knowledge at the bedrock of my awareness, keeps me going on days like today. Today I am feeling very frustrated by my poor health. I am having some worrisome symptoms that keep me from working. I am having some pain. It’s not a good day, but for some reason I feel better in myself – emotionally lighter – today than I have for the last few days. I think it may be because I can look at the negatives and know that they will not last forever.

I lifted this off a friend’s Facebook page:

Right. That about sums it up.

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.