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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”.
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.
Today we are hearing from another young woman with metastatic cancer, Melissa Ross. Melissa already had Stage IV breast cancer when she was diagnosed at not quite forty-one years of age. That was four years ago, and today Melissa is NED (has no evidence of disease). “I accept that the cancer is not gone, never will be, unless some miracle in research happens in the next few years,” she writes. “We ride the same train.” Melissa has a special message to share. Let’s listen and give her a very warm welcome!
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I read a lot of blogs about what people don’t like about breast cancer, the treatments, the ridiculous things that people say and do when they find out you have it, the pain, the fear, the anger. All of this is true and real, and everyone who is diagnosed with the disease has every right to voice these things. When I was initially diagnosed, I had many of these same feelings, and some days I still do. But today I want to write about another aspect of breast cancer, at least for me. My diagnosis, like anyone who is diagnosed with a serious illness, was life changing. Change, any kind of change, is not inherently bad or good. It has both bad and good, if you look for them. Too often in the world we only talk about all the bad things that happen, and don’t put enough emphasis on the good things. So today I want to write about some of the good things that have come out of this experience for me. This may not be true for everyone, we each have our own path to walk, but this is my path.
I no longer wait for things to start. “When I turn 21 I will travel the world”, “when I buy my first house I will have children”, “when I pay off my debts I will remodel my bathroom”. Well, I never traveled the world at 21, and I can no longer have children, so I am not waiting to have that bathroom I have always dreamed of. We are taught that there must be an order to our life, a time to do certain things, but this can be so misleading. Go to school, get a job, find a mate, get married, have kids, buy a house, retire. It does not always hold true, nor should it have to. My cancer threw me out of the framework that I had built for myself, it made me realize that my life can be whatever I want it to be, I don’t have to wait for the right time, or place, or situation. This has allowed me to enjoy wonderful experiences, see beautiful places, and meet amazing people. All things I would have missed out on because the “time” wasn’t right.
I love my life. Really love it. I love waking up and seeing the sunlight through the window, smelling the air, walking the dog. I love that I am alive, even the so called “bad” things about life. Do I have pain? Yes. But better to have pain than having nothing. Do I get angry? Yes. But isn’t it wonderful that I get to feel the amazing emotions than to have nothing at all? Perhaps truly accepting that I will not have this forever, that I will one day leave this world and all the crazy, screwed up, fantastic things that are in it, makes me appreciate it all the more, and that whatever comes after this will not be the same, that I will never see that sunlight again, never feel the fire of my anger, never have the physical sensations that we too often take for granted. Life, any life, is truly a blessing, without it, there is nothing.
I am a happy person. When I catch myself not being happy, whether its stress over work, stupid drivers, or idiots blabbering away on TV, I realize that my unhappiness is not due to the world, it is due to me, specifically, my expectation that things should be different than they are. I try very hard to let go of these expectations, to choose to be happy. I now know that happiness is not determined by something outside of me, it is mine, I own it, and nothing can change that except me.
Would I return all of this to not have cancer? Of course I would, I’d be an idiot not to, but it is not an option that is available to me, so I must take the things I have been given, both good and bad, and make the best of them. In the end, that is all anyone can do.
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 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?
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.
Today we will hear from Sylvie F., a member of a French-language IBC/BC support group in Quebec. With her post, we are starting a new phase of Telling Knots – bilingual posts! Avec ce poste nous commençons une nouvelle phase de Telling Knots- des postes bilingues!
Sylvie writes (click here for the English):
Hello, je suis Sylvie, une femme de 51 ans qui vit en France, 2 filles, 20 et 12 ans, touchée par le cancer du sein depuis dix ans, des métastases pulmonaires depuis 2012 et qui essaie de retrouver une vie quotidienne la plus normale possible.
La vie avec des métastases est une vie en sursis, un jour après l’autre mais l’avenir s’assombrit entre angoisse et jours plus cléments, les personnes ne savent souvent pas ce que cela signifie, par exemple mon chef pense que je suis en rémission et si je suis fatiguée maintenant, mon état ne peut que s’améliorer, s’il savait que je vis à l’heure actuels mes moments les plus fastes malgré les séquelles et la fatigue, que l’avenir est un mot qui nous fait peur, avec le spectre de la rechute, des douleurs et de la déchéance de la fin de vie, à l’heure où les collègues font des projets de retraite, il est gentil, je n’ai pas envie de l’assommer avec ce qui risque de m’arriver, on ménage nos proches car la réalité fait peur. On est comme des funambules sur le fil de la vie et un jour ce sera la chute.
Hello, I’m Sylvie, a fifty-one-year-old woman with two daughters, aged 20 and 12 years, and I live in France. I have had breast cancer for ten years and metastasis in my lungs since 2012. I am trying to live as normal a life as possible.
Life with metastases is a life on probation, one day after the other but the future gets darker, between anxiety on some days and other days, better. People often do not know what this means; for example, my boss thinks that I’m in remission and if I’m tired right now, it a sign that my condition can only improve (!!!). If he only knew that in reality, right now is my best time, despite the side effects and extreme fatigue. “Future” is a word that frightens us with the specter of relapse, pain and decay at the end of life, at a time when colleagues are making retirement plans! It`s ok, I don`t want to scare him with what might happen to me. We want to spare our loved ones because the reality is so frightening. We are tightrope walkers on the thread of life and one day we’ll fall off.
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.
Today we will hear from Kate, who blogs at Kate Has Cancer. In her mid-forties and the mother of a young child, Kate writes “One thing I think I need to do is improve breast cancer awareness by sharing my experience.” It’s an honor and a delight to host Kate as she shares it here. Please welcome her warmly!
Two years ago this month, I really wasn’t worried about the lump my gynaecologist had just found on my breast. You see, it felt just like one I’d had five years before on the other breast — a fullness that went away after it had been determined to be benign.
This time, I was wrong. But for a couple of weeks, I didn’t know the lump was actually invasive ductal breast cancer. I didn’t know that my weird blood test results were a reflection of the tumours that riddled my liver. And I didn’t know that my aching back wasn’t “out” but broken in several places.
After all, like many people, all I knew was that October = breast cancer = pink. I didn’t know that for most women who get breast cancer, it doesn’t run in their families. I sure didn’t know that men get breast cancer. I didn’t know that in about 10% of the new diagnoses, breast cancer has already spread to distant organs before it’s found. All I had was this vague notion that breast cancer was an easy cancer.
Foolishly, I didn’t know that metastasized breast cancer cannot be cured. And advanced breast cancer was what I had. Easy cancer? It sure wasn’t easy telling my little girl I have cancer. No, these last two years haven’t been easy at all.
October of 2011 was eye-opening for me, in many ways. Yet, for a long time, I had trouble believing it was true. Day after day, I would have to remind myself that they had done a biopsy…on my own breast…and it was cancer. But I was supposed to live to be one hundred, like my grandmother almost did. Yet, there I was, dying before my husband’s eyes. Until treatment started, that is. Though it looked very dark for some time, chemo and Herceptin shrunk my tumours. Then I switched to Tamoxifen, which has held things stable.
My hair is regrown, and I’m walking better, but I know I’m not cured. Two years after my eye-opening Breast Cancer Awareness Month, there is still no cure for breast cancer. And a cure is what I need. Some educated awareness would be nice too.
My little girl tells me that nothing is impossible. She’s a smart girl; maybe she’s right.
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.
Stephanie wrote today’s post. Steph is a 40-something single mom to an adorably spunky 4 year old named Katy. She was diagnosed with Stage IV breast cancer only 4 months after she adopted Katy from Ethiopia. She continues to work, play, love and live with grace and gusto. Steph blogs at Finding Family, where this post first appeared. Let’s welcome her with our famous Telling Knots comment love!
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Blissful Pink
Still in the sunshine and butterflies pink, blissfully ignorant of it all, just noticing the pink, not sure what it means or why I should care. “That’s a pretty pink ribbon, and breast cancer seems bad so it won’t hurt if I donate to something helping it.” “Oh, breast cancer. My neighbor’s sister had that but she’s cured now.”
Desperate Pink
Crap, crap, shit hitting the fan pink. Now I have it, what do I do with it. Get a kick-ass wig, a prayer shawl and a parking pass at the hospital. “Well the pink ribbon helped others, it’s sure to help me too.”
Invisible Pink
Pink? What pink, I don’t have breast cancer anymore pink. Get a certificate for finishing treatment, get hair back and try to forget it ever happened. It’s the head in the sand approach that doesn’t really work when it’s everywhere. “Pink, sure it’s all good but that’s behind me now, I don’t need it anymore.”
Angry Pink
Despair and anger from the depths of my soul pink. Goddamn pink ribbon didn’t fucking do anything for me, why should anyone else get to feel good about it. And why should they anyway, it’s not like it’s cured or anything. “This wasn’t supposed to happen, the pink ribbon said I was cured.” “What good is early detection if it doesn’t do anything to the outcome?”
Amicable Pink
Just like an amicable divorce is still a divorce, guess what, cancer is still a terminal disease pink. Regardless of the statistics, someone will die from it. Maybe not you but someone. Does that mean we shouldn’t have raised awareness? Does that mean it should be all about me, the ‘loser’ in the fight? Guess what, I haven’t lost yet. I’m still a survivor, even if my pink is a bit tarnished and battered. Let’s just not forget that for all the early detection and ‘cured’ survivors, there’s someone out there living the battle every day. And living with gusto and grace. “Yes I have breast cancer but it doesn’t have me, and it shouldn’t have you either.”
On any given day, I might fluctuate between some or all of these stages. I wholeheartedly support my meta-sisters in the fight to remember the 30% of us who don’t get to forget it ever happened. I also support the early detected, treated and released survivors who are lucky enough to be in the majority. Sure wish I could be one of you and I hope you can stay there forever. But as long as I can’t, consider me thankful to be here to debate the issue.
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.
Today’s post is by my very dear friend Aliza Bat-Ami. This is her third guest post on the blog. You may remember in particular her account of going to the hospital to be with me for my mastectomy, almost ten years ago. Aliza had another close friend with metastatic breast cancer. Aliza is brutally honest about her experience as a fearless friend, or as she prefers to say, “a friend-alongside”. Please give her lots of comment love: she, and all our friends-alongside, deserve medals!
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Like most people the number of people that I know more or less closely who have cancer – mostly breast cancer – is ever increasing. If one has no familial responsibility to the patient, then the natural reaction is to be sympathetic from afar, in fact from as far as possible. Every time I heard of another diagnosis I have a strong feeling of “there but for the grace of God, go I” – and feel guilt at my relief at each clear mammography.
However things changed when a dear friend, Nina, was diagnosed with metastatic breast cancer.
Nina came from a culture totally different from my proactive Western individualism. She was raised to value stoicism and conformity and not to question authority. She was thus the most compliant patient any doctor could wish for. Far from being proactive and seeking out the “best” treatments, she determined right at the start to trust God and her doctors. What they said, she did.
At first I just took an interest in her progress not exactly from afar, but not at any cost to myself. The moment that I was suddenly irrevocably involved was the day when I discovered that her husband, from the same stoic background as herself, was driving her to oncology clinic, leaving her there alone and picking her up four hours late. Neither Nina nor her husband thought this odd but when I heard this I was struck to the heart. (In our language we say that “my heart was pinched” – very descriptive and accurate.) I couldn’t help it – I was now involved. I didn’t know what I was getting into, just that I had to do what I could. I started to accompany her to all her treatments, arranging my work so I could do so.
For three and a half years a large part of my life was being with her and her family. It wasn’t only chemo and radiotherapy. We also managed (albeit increasingly small) celebrations of life – driving out to see spring flowers, watching sun-sets, walking by the sea.
Time went by and we observed the decline and disappearance of many of Nina’s fellow patients. Her reserves of patience and strength waned. Both of us were getting very tired and depressed as the bad days began to outnumber the better days. Only the impossibility of retreating at this stage kept me going – Nina had no choice.
Then came the beginning of the end. I was present at the first visit of the home hospice team when the social worker asked Nina what she felt about the fact that there was no more treatment. Nina replied “Joy”. That reply certainly stopped the conversation! I was thunderstruck as I finally realized that the end of our journey together was imminent and felt a terrible guilty relief at the thought.
The last three months were in fact mostly as pleasant as could be hoped for – Nina was pain free, if increasingly sleepy. She was never alone and eventually died in her own bed with her family around her. I held her hand as the pulse ceased, and I was glad that she was finally without pain.
At her funeral I thought again – it is over, now I can rest. I missed her and grieved but I had several sources of comfort. Nina had shown me so much about how to live and we had the hope and real comfort of our faith in God. A totally unexpected and unanticipated gift was becoming “in-loco-grandparentis” for some of her grandchildren (especially sweet as I have none of my own.)
Now again I have another good friend with advanced metastatic cancer. My first thought when I heard the news of her cancer was selfishly “not again! I can’t take it”, but then my heart was “pinched” again and there is no turning back. This journey is quite different, with vast differences in character and circumstances, and there are always new lessons to be learnt, as I wrote in a previous posting.
Being a “friend-alongside” of a person with cancer is most definitely not something I chose for myself, but looking back I know that I received so much more than I gave in this journey.
Telling Knots 