Like a funeral selfie? An Open Letter to Emma G. Keller and the editors of The Guardian

Image credit: Serp / 123RF Stock Photo

Going into more than one kind of light.
Image credit: Serp / 123RF Stock Photo

In reference to Ms Keller’s astonishing piece “Forget funeral selfies. What are the ethics of tweeting a terminal illness?” published online on 8 January 2014.

First, my full disclosure: Like Lisa Bonchek Adams, I have Stage IV (advanced, metastatic) breast cancer, although I am perhaps not as close to the end as Lisa is. I have a blog. I tweet and I use Facebook. Ms Keller, do you have something to disclose? I am at a loss to understand why you felt it necessary to write this opinion piece and more particularly why you felt it necessary to blitz Lisa Adams with barely disguised ad hominem attacks.

There are so many hurtful elements in “Forget funeral selfies” that I cannot respond to all of them. Indeed, I don’t want to. I read the piece yesterday (It doesn’t seem be a journalistic article, and it’s not really an essay, either. I don’t know how to describe Keller’s text other than as a “piece”.) and was so upset by it that I put off writing this response until today.

Let’s start with “funeral selfies”, shall we? Quoting Keller, “Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her [Lisa Adams’] tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?” I’ll leave it to Keller to explore the question about her own “obsession” and her discomfort with it, though I think it would have been better for her on a personal level and would have led to a much deeper and more interesting essay had she done so before publishing.

Okay, then: funeral selfies – cellphone photographs some people take of themselves while attending funerals. They are in questionable taste at the very least, most of us would agree, and very self-centered at a time when our thoughts should turn to the deceased. From the beginning, then, Keller tells us what we are expected to take away from her piece: live tweeting one’s experience of terminal illness is bad form.

But how is tweeting (or blogging) my personal experience equivalent to funeral selfies, let alone “one step further”, a “deathbed selfie”? The comparison is so strange that I had a terrible time trying to take it in.

Then it came to me. Those of us who use social media to talk about our experience with our terminal illness are defying categories. Social media is supposed to be for people who eat in restaurants and play with their pets and attend sporting events and go to professional conferences, right? People with terminal illness are supposed to rest quietly in darkened rooms or lie sighing on chaise longues on sun porches or smile bravely as they murmur a few words to their nearest and dearest, right?

Could it be that Keller’s discomfort with her “obsession” with Lisa’s tweets is a reflection of society’s discomfort with death and dying? People like Lisa and like many of my brothers- and sisters-in-mets (my fond term for people who have metastatic breast cancer)—people like me—cause discomfort to some because we dare to bring our experience into the full light of day. We cause discomfort to some because we are living, living in acute awareness of our impending death, living in pain but living as fully as we can while we are dying.

I write because I am a writer. I’ve used words to try to understand and express my inner world since I was seven years old when I wrote an extended metaphor based on the life cycle of a silk worm. My writing has (thankfully) become more sophisticated as I’ve grown older and has become more of a consciously used tool of introspection. I suspect that is the case with many of us bloggers and, dare I say it, journalists.

Should we stop writing just because we are nearing the end of life? Should we forego the social interaction that is made so difficult by our physical condition but is facilitated through the new media? Should we lock ourselves away in a figurative darkened room so as not to chance disturbing the hale and hearty with thoughts of death?

This is not a question of ethics, Emma Keller; it is a social issue and an eschatological question (in the larger sense). It is not a social gaffe on the level of funeral selfies; it is an expression of our humanness, of our being as a social animal. Most importantly, it is not for you or anyone else to judge the decision of a dying woman.

The apology you owe to Lisa Bonchek Adams goes far beyond not having “given her advanced warning about the article”.

Respect

Advertisements

Pinktober Guest Post: Chris Welander

Pink-to-ber n A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Chris Welander is our guest writer today. Chris is a minority within a minority: one of our youthful sisters-in-mets. Diagnosed ten years ago at only 37 years of age, Chris tells her story in a voice that is both strong and plaintive.

I was in shock.

I was first diagnosed with breast cancer in 2003 at age 37. I hit it hard with a double mastectomy, oophorectomy and 10 weeks of chemo. I had a huge breast cancer team. Raised a lot of money for mammograms Went to support groups and really assumed I beat it. I didn’t worry. My iron will plus hard years of treatment was going to fix this.

When I found out two years ago that it had spread to my hip I was shocked. More treatment, lots of surgeries. I left work, lost touch with friends. Thank God for my metastatic support group but I was still young comparatively to many of the members. I felt freaky and lonely.

Last month my cancer spread to my liver after months of completely clean scans. More shock and boy do I feel gypped! I wanted to grow old with my partner. I want to contribute to society with my career and help my mom enter her twilight years. I want to see the pyramids, cook a hundred Italian recipes and read all my bedside books. Now I just make my friends and family sad. I talk to lawyers, doctors, financial planners and make THEM sad. I feel forgotten and still have to fight for care, for my rights and to be heard.

I think all discussion about breast cancer is better than the shame in the old days of not even saying the word “breast”. So I don’t have an issue with pink-azation. But I am invisible in the breast cancer community absolutely…mostly because women can be so stubborn. Like I didn’t work hard enough. Let me tell you I did. And being younger ironically works against my survival. You know what I need now? Money for a trip, cheaper prescriptions, people to say loving things to my partner instead of always asking how I am. And a resolution that agrees metastatic patients have been ignored and that more will be done to fund treatment for us and those after us.

Can it happen? Can we will that?

Boarding Pass

Image Credit: By cartoonist Kate Matthews.  Check out her work at www.facebook.com/cancercartoons Used with permission.

Image Credit: By cartoonist Kate Matthews. Check out her work at http://www.facebook.com/cancercartoons Used with permission.

Will it surprise anyone that death and dying are fairly often in my thoughts? Not in a morbid way, but as an event I will soon attend, a fact of life, the next step. I’ve written several posts about it. My favorites are Living in an Undefined Space, It’s not death, it’s the dyingand One Advantage of Dying? 

Perhaps that is why this cartoon spoke to me so loudly. Yes, people do say that to people with advanced cancer.

They are not mean-spirited people or cruel or pathologically self-involved people. Usually, they are people who love me, who don’t want me to be depressed or morbid, who are trying to cheer me up. It isn’t a horrid thing to say, but it is, I’m sorry to say, misguided and, however unknowingly, disrespectful of my situation and my feelings about it.

I don’t think anyone would seriously claim that the awareness of death experienced by a person of average health or a person who has a chronic, non-lethal disease is the same awareness as that of someone who has a disease that is fatal and cannot be cured. Metastatic breast cancer (MBC) is “managed” but there is no medical cure. It will kill us. It will kill me.

So what does that mean to me? How does it affect my life, my decisions? I’m not talking here about limited ability to perform activities of daily living (ADL) or about quality of life impaired by pain, anxiety, treatment side effects, and so on. I’m talking about the awareness of the relative imminence of my death: what does that do to my inner world? How does it affect my life choices day by day?

The biggest effect, I think, is that more than ever I am striving to be kind to people. Kindness is greatly under-rated. I don’t think I’m much different from other people in finding it much easier to say “I love you with the love of the Lord” (or whatever) than to do something kind for someone who may have hurt me. Yet acts of kindness speak much louder than words.

A friend of mine gave up most of her free day today to accompany me on my first walk outside the house in months. That was kindness. Other friends take time to email or text me encouraging or funny little messages. That is kindness. Just “being nice” to people is kindness. It’s easy when it’s someone I like. When it’s someone about whom I feel indifferent or even dislike – whoopsy! That’s a whole ‘nother thing!

A couple of weeks ago, my then household help broke something, a pyrex bowl with cover that I use quite a bit. He told me about it, and my first reaction was frustration and even anger. I took a breath and decided to be kind instead of angry. He didn’t do it on purpose and he knew he shouldn’t break things. It was an accident and he didn’t need me to make him feel bad about it.

“Oh well,” I said. “Be sure to clean up all the little bits. Pyrex is a bear when it breaks.” And that was that. I chose kindness over anger. Neither option would change the reality of the broken bowl, but a kind response is a concrete way to show that I value people, value that young man, over a glass bowl.

Valuing people and letting them know I value them is another area of concentration for me since my MBC diagnosis. Being kind is part of that. So is being polite, not blaming people for things that are not their fault and not going overboard when they are at fault. It’s a question of priorities. Which is more precious: my late pizza delivery, a broken bowl, a mistake in my grocery order… or the person I am talking to?

Of course I get angry and frustrated; I’m not pretending that I don’t. All I’m saying is that I am learning to prioritize the more important over the less.

In a novel I read once, an old woman said, “I wish I knew when I was going to die.” The people around were a little shocked and asked her why. “Because then,” she replied, “I should know what book to read next.”

Priorities.

One Advantage of Dying?

Have you noticed how many television shows and movies have a cancer theme these days? And how many of them deal with breast cancer? And how uplifting and inspirational they are, as a rule?

In order to keep the shows so relentlessly positive, of course, they don’t show much metastatic cancer. I did see a British TV show (a comedy-drama series) the other day that had a lady with metastatic cancer in one episode. This lady, thinking she had a year left to live, offered the visiting nurse coffee. The nurse took a sip and, “This has whiskey in it!”

“Brandy, actually,” the lady replied. “One advantage of dying is that you get to do all the things that are supposed to kill you.” Her goal was to cram a lifetime’s worth of experience into that last year.

I admit that I play that card sometimes. I am not above enjoying slightly discomfiting nurses and doctors and casual friends. If someone comments about my eating too many artificially flavored foods or something like that, I say, “What? It could give me cancer?”

I do have a sense of humor that has been one of primary defense mechanisms as well as one of my greatest coping techniques. (Two sides of one coin.) I like to joke and kid around. I love absurdity and anachronism. I am fundamentally happy. (Remember that the fundament is what is at the bottom, the foundation. It is not always visible, but it’s always there, holding everything up.)

(I also really, really love parentheses as a written form.)

I’m doing pretty well, all things considered. I have a couple of new pains that I’m going to discuss with my oncologist at our appointment next month. No point in making a special appointment—I know what is most probably causing the pain, I have pain meds at home. I don’t see any practical benefit to knowing that yes, it’s more mets, and if it’s something else, it’s not urgent and the onc will let me know in due course.

Don’t get me wrong. I am afraid of progression. I know that the cancer will inevitably progress and then progress some more until it kills me. I am not complacent in the face of that. But I can’t do anything about it that I’m not already doing, so when I feel afraid, I look at it, recognize it, let it go.

It’s not only alcoholics who can benefit from the beginning of Serenity Prayer. Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

This isn’t a one-time thing, this letting go. I do it over and over again, every time I get scared. Sometimes I cry and talk to a friend about it, sometimes I write about it. Sometimes I just keep it to myself… to myself and God. But I do let it go each time.

I liked the TV show I saw the other day. Toward the end, the visiting nurse had to give that lady the news that her last MRI showed progression in several organs. “How long do I have,” the lady whispered. “Two months,” said the nurse.

The lady’s face crumpled, her body seemed to collapse inward, and she cried. Then she straightened up, took a deep breath and said, “Well. I think we can skip the coffee today and go straight to the brandy!”

That was real.  Thank you, writers of Frankie.

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

Balancing Hope and Cope by Dr. James C. Salwitz

It seems to me that while we should never forget the possibility of the miraculous, and try always to avoid despair, that our patients are powerful beings and perhaps our true goal should be to move from the limits of hope, to the freedom and possibility of cope. (Emphasis mine – KT)

These words were written by James C. Salwitz MD, a medical oncologist and clinical professor of medicine in New Jersey (USA).  He blogs at Sunrise Rounds and is a frequent guest blogger on KevinMD.com, which is where I read the following post. It is reblogged here with the kind permission of Dr. Salwitz.

Have you experienced “the limits of hope”? Do you know “the freedom and possibility of cope”? Please read the essay and let us know what you think.

=====

The fine balance between hope and cope in cancer patients

At tumor board recently, we discussed what we tell our patients about prognosis.  Some oncologists give detailed information, including specific survival times.  Others never discuss the future, and let the events of the illness teach patient and family.  All try to adjust what they say by what the patient needs, because each physician expressed one core goal; “Whatever I say I don’t want the patient to lose hope.”  I thought about that message for a while and decided they are wrong.

The Oxford English Dictionary defines “hope as to “entertain the expectation of something desired.” Synonyms, according to Roget, include”faith, possibility, silver lining and no cause for despair.”  These are wonderful and powerful feelings.  My concern is that they are feelings which have at their core a tendency to look away from hard truth.  If our primary goal is to “hope” that things will go well, it may mean that we deny the reality that they are likely to go badly.  I worry that when we deny reality we deny ourselves the chance to cope, instead of hope.

A 65-year old man has stage 4 pancreatic cancer.  His oncologist does not want to take away the man’s hope, so he immediately offers chemotherapy.  The doctor does not say that this is a 100% fatal condition, but instead spends their visits talking about treatment and side effects. The man spends the next four months getting chemo, which has a minimal benefit.  Then, instead of talking about prognosis, another chemo is offered.  Never does the man hear the message, “you have a fatal disease, there is no absolute rule you must take chemo, you may want to spend the time you have doing something other than visiting the cancer clinic.”  Hope of a chemotherapy induced blue-sky substitutes for complete information.

We all balance, hope and cope.  We must use denial of the bad things that can happen, just to get through our normal daily lives, let alone deal with disease.  Hopes and dreams are important to our emotional health and each of us has different needs.  On the other hand, in my experience, the vast majority of people are emotionally strong and, with patience, teaching, support and love, can learn to cope with even terrible news.

A colleague of mine told me the story of a young neighbor, with school age children, who died of lung cancer.  While she underwent aggressive medical care, she also received honest information regarding the fatal nature of her disease.  She used the time at the end of her life to design, write and even film what she wanted for the future of her children, so that she would always be part of their lives.  If she had been given only hope, and never the opportunity to cope, she might have might have gone blindly forward with treatment and been astonished when suddenly the end arrived.

I have deep respect for the compassion of physicians who commit their careers to sitting at cancer’s bedside. Their sensitivity to the emotional needs of their patients is in the finest tradition of their profession.  However, I wonder whether there is a tendency in modern medicine to say little, offer too much and perhaps deny, in the service of hope.  It seems to me that while we should never forget the possibility of the miraculous, and try always to avoid despair, that our patients are powerful beings and perhaps our true goal should be to move from the limits of hope, to the freedom and possibility of cope.

Angry

ExplosionI’m angry. I have every reason to be angry, and I am angry. I know all about anger as negative energy. I know all about how nice, well-educated religious ladies aren’t supposed to be angry. I know all about ways to reframe the situation, ways to channel anger into positive pursuits. I wasn’t a psych professional for nothing.

But you know what? I don’t care. I am angry and I have every reason to be angry. I am angry and I going to keep saying that and acknowledging that part of my reality until I don’t need to any more.

I’ve talked about my idea of acceptance a lot in this blog, notably here. As I say again and again:

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. 

Right now anger is part of my reality. Feelings are not the boss of me, as I also like to say. “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,” as I wrote there. But feelings are real and they are part of the greater reality.

Okay. Now that we have all that out of the way – I’m angry! I’m furious! I’m enraged! No one in my family has had cancer – until me. Then I get cancer (how? who knows?) and I end up being one of the 30%. Lucky puppy me.

It used to be that when I got angry I’d go for a long walk or spend an hour on my exercise bike. I can’t do that any more. I can’t pound pillows or throw stuffed animals against the wall. But I can write. I can and do write. Homo verbalis – I use my words.

I am angry at cancer.

I am angry at awareness campaigns that don’t donate to research.

I am angry at people who call breast cancer “the good cancer”.

I am angry at my doctors for not having the tools to help me better.

I am angry at my body for being so weak and tired.

I am angry at the pain medicine that clouds my thought.

I am angry at people who stay away from me because terminal disease scares them.

I am angry, angry angry!

And then I come out the other side of the anger and I weep. I sob. I don’t know how to do this. I don’t know how to get ready to say goodbye. I cry because I don’t know how much longer I have, and I cry because I don’t know if it would be worse for that to be a longer or a shorter time.

I cry and I become calmer. I may even be able to sleep tonight.

Better living through chemistry?

Percocet-Generic-Oxycodone-242x300It was only about four or five months ago that I wrote Pain, a post about my decision to put off taking opiate pain relievers. I was – and still am – very ambivalent about it. The difference being that now I’ve taken the plunge.

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

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

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

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

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

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

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

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

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

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

Letter to a mother who died of breast cancer

2681468927_47dbbd0440This letter was written by Karen Cook, author of What Girls Learnten years after the death of her mother from breast cancer. It is reblogged with permission from Shaun Usher’s wonderful blog, Letters of Note: correspondence deserving of a wider audience.

This letter both moved me and empowered me. I’ve been writing a lot about my own death and my own feelings about it. I have no living children, but there are people who love me. Karen Cook’s letter caused me to think about them for a change – not just my own little self.

The letter is a little long, but entirely worth the few minutes you’ll invest in reading it.

* * * *

Dear Mom,

What time was I born?
When did I walk?
What was my first word?

My body has begun to look like yours. Suddenly I can see you in me. I have so many questions. I look for answers in the air. Listen for your voice. Anticipate. Find meaning in the example of your life. I imagine what you might have said or done. Sometimes I hear answers in the echo of your absence. The notion of mentor is always a little empty for me. Holding out for the hope of you. My identity has taken shape in spite of that absence. There are women I go to for advice. But advice comes from the outside. Knowing, from within. There is so much I don’t know.

What were your secrets?
What was your greatest source of strength?
When did you know you were dying?

I wish I had paid closer attention. The things that really matter you gave me early on—a way of being and loving and imagining. It’s the stuff of daily life that is often more challenging. I step unsure into a world of rules and etiquette, not knowing what is expected in many situations. I am lacking a certain kind of confidence. Decisions and departures are difficult. As are dinner parties. Celebrations and ceremony. Any kind of change. Small things become symbolic. Every object matters—that moth-eaten sweater, those photos. Suddenly I care about your silverware. My memory is an album of missed opportunities. The loss of you lingers.

…Please read the rest of the letter here.

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?