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.

Cancer Words

I’ve written quite a bit about the power of words. Words are potent, sometimes in magical. Words do not only express our lived experience, they also give it shape, name it, describe it. One aspect of philosophy of language deals with the interaction and mutual influence of words and thought. Fields as diverse as linguistics, clinical psychology and economics address this idea in different ways.

But everyone agrees that words are important, powerful. That is why, like many other people, I care about what labels I attribute to myself and others. I have written quite a bit about that. You might want to look at The Problem with Surviving and Have I Survived Yet, for example.

So it was very interesting to find a link to “After Cancer: Debate About Terminology Beyond Treatment” in today’s Medscape Nurses newsletter. This is part of a discussion that began with “Cancer Survivorship: Why Labels Matter” (J Clin Oncol2013;31:409-411) by Canadian social scientists Kirsten Bell and Svetlana Ristovski-Slijepcevic.

Bell and Ristovski-Slijepcevic clearly attribute importance to the terms we use. The Medscape article quotes them: “Words not only describe, but construct, the phenomena under question,” they wrote, explaining that the term “someone who has had cancer” may ignore “the ongoing presence of cancer in the lives of many” who have had the disease.”

The discussion is continued by Paolo Tralongo and his colleagues, who suggest a range of terms, but attribute the importance of terminology to the way a term helps or hinders a patient in coping with the disease. They suggest a range of terms–patients with…

  • acute cancer (for people in treatment)
  • cured cancer (for people “who have long been disease-free and have reached a time when their mortality risk does not exceed that of their age and gender peers”)
  • chronic cancer (for people with advanced cancer that alternates remissions and relapses)
  • chronic cancer, active phase

I strongly encourage interested people to follow the link above to the Medscape article. There you will also find links to the original articles and letters in the Journal of Clinical Oncology. 

The word “survivor” annoys me for a number of reasons that I’ve described elsewhere. The main reason it annoys me at the moment is that I haven’t survived it yet; I still have cancer in my body. The term “chronic cancer” intrigues me. My stage IV disease is advanced, but not yet terminal (i.e. I am not expected to die in the next several weeks or months). Perhaps “chronic” is the best way to refer to it.

“Chronic cancer” has the advantage of being clear, specific and easily understood. It is very low on drama, even less dramatic than “living with cancer”, which has been my preferred term to date. I’m not sure yet, but I think I like it.

(As terminology. The disease itself is one of the worst things that has ever happened to me.)

The Fault in Our Stars: a review

The Fault in Our StarsThe Fault in Our Stars by John Green

My rating: 4 of 5 stars

This is a sharp, snarky, funny, intelligent, philosophical coming of age story with a bitter twist. The three teenagers at its center–one who has to go everywhere with her oxygen tank in tow, one whose leg was amputated, and one who lost an eye–all live with advanced cancer.

Yep. It’s a funny story about kids with cancer.

It’s also touching and inspirational, but not in that sappy made-for-television movie way. The kids use wry humor to deal with their deforming, crippling disease. I get it: that is how I deal with my own metastatic cancer.

There is love interest, there are plans and schemes, there is rebellion and disobedience, there are parents to rely on and outwit, there are doctors and nurses, there is the secret language of people living with cancer. (Trudging up the stairs to the support group with oxygen tank in tow because taking the elevator is too “last days”, or asking their peers if they “go to school” as a way of finding out how advanced their disease is because being taken out of school is a sign that you don’t have much longer to live, for example.)

Hazel, Isaac and Augustus are intelligent and creative, they love to read and to play video games. They indulge the adults who don’t know how to help them (or themselves) feel better. They have wishes and dreams, and they are also realistic about what can be achieved.

I loved The Fault in Our Stars, a life-affirming book. I have advanced cancer and I have been a teenager, but never both at the same time. If I had had the misfortune to be a teenager with advanced cancer, I think I would have been a lot like Hazel. I hope I would have.

View all my reviews

Birthday Week 2013 – Take 3

Don’t Give Up . . . Don’t Ever Give Up. (Motto of the V Foundation for Cancer Research)

Until a much-loved friend directed me to this video, I didn’t know much about Jimmy V (Jim Valvano). He was an award-winning American college basketball coach and sports commentator. In June 1992, at the age of forty-six, he was diagnosed with bone cancer. Metastasis was diagnosed the following month.

Exactly twenty years and six days ago, Jimmy V was awarded the Arthur Ashe Courage and Humanitarian Award at the first ESPY awards. On that occasion he announced the formation of the the V Foundation for Cancer Research.

There are some great moments in this inspirational speech, but one of my favorites comes toward the end, proving yet again that cancer doesn’t kill our sense of humor; it sharpens our awareness of life. A “thirty-second warning” came up on the teleprompter, and Jimmy V said,

“They got that screen up there flashing 30 seconds, like I care about that screen. I got tumors all over my body and I’m worried about some guy in the back going 30 seconds?”

Jimmy V died eight weeks later. His grave marker is inscribed:

 “Take time every day to laugh, to think, to cry.”

Here is the speech.

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.

If only…!

I’ve written before (particularly here and here) about my distaste for the bellicose images used when most people talk about cancer treatment. I didn’t write the piece below, but I love it! If only it were true…

Here’s a sample:

Using nanotechnology and some other high tech gadgetry, researchers at the National Cancer Institute along with a host of other leading medical centers are engineering good cells to fight bad cancer cells in a nice way that does not involve hitting. These new cancer fighting cells are unique in that they don’t just kill the bad cells; they convert them back to good cells, without resorting to violence. They kill them with kindness! (More…)

I shall be made thy music

Since I am come to that holy room,
   Where, with thy choir of saints for evermore,
I shall be made thy music, as I come
   I tune the instrument here at the door,
   And what I must do then, think now before.

This is the first stanza of John Donne’s “Hymn to God my God, in my Sickness”. Donne was an Englishman who lived on the cusp of the 16th and 17th centuries, a man who sacrificed career, reputation and even freedom to marry a woman. He traveled extensively abroad and came home to be a lawyer. A womanizer in his youth, he fathered twelve children with his wife and never remarried after her death; from a family of Catholic martyrs, including Thomas More, he became a member of the Anglican clergy and was named Dean of Saint Paul’s. He is perhaps best remembered today for his poem “No Man is an Island”. He died, some think of stomach cancer, in 1631 at the age of 59.

Donne’s life seems very modern to me, as peripatetic and mouvementé as that of a Baby Boomer. It certainly reminds me of mine. I bumped around for decades among cultures and subcultures, from continent to continent, career to career, from mainstream to margins and back again,  before coming to rest here in Jerusalem, with a life that I could never have imagined for its depth and breadth and luxurious comfort of soul. Yes, comfort of soul, even while the body is tired and ill.

Why do these particular five lines speak to me? I am living with cancer, not dying from it at this time, yet the reminder of death is never far from me. I relate to the prospect of my own death in different ways at different times; for now, I am more or less matter of fact about it. Death will come to me, it will come to you, it will come to everyone now living. Fact of life.

Donne’s concept of death in this poem is far from dispassionate. I shall be made thy music – I will become God’s music, the song of the heavenly choir, and now I am in the anteroom, looking in and preparing myself for the moment I enter. I tune the instrument, the part of me that is eternal, here at the door / And what I must do then, I think now before.

With the same firm, gentle and precise touch that once tuned my viola, my guitar, now I tune the instrument of my eternal being and prepare for the moment when I am made music.