The Burden of Survivorship

Posted on: June 18th, 2012 by
44

My oil painting: “Survivorship”



I’m a breast cancer “survivor,” whatever that means. 


But I’m still waiting — waiting for that moment when I can feel like a triumphant and brave breast cancer warrior-survivor, that ever-so-neatly-packaged archetype.


I want to live up to those expectations, you know, the ones where people tell me how brave I am, how heroic I am, how much of a role model I am. 


How inspiring I am.


I wish I could feel happy when I hear the “good-for-you-for-winning-your-battle-on-cancer” comments.


But the praises and accolades don’t sit well with me. 


Surviving breast cancer is a good thing, don’t get me wrong. And I survived partly through self-advocacy — and partly through sheer luck. Random luck. 


I wouldn’t trade my life for anything. But the status of “survivor” carries a heavy burden and a heavy price.


People who see me as heroic should know some things about me:


Not a day goes by without thinking about cancer. I spend enormous amounts of some energy quelling the fear welling up inside of me. I get panic attacks and have to control them with deep breathing. I worry about the toll cancer treatment has had on my body, I have body-image issues, osteopenia from treatment, chemobrain, constant abdominal and back pain from surgery, and fear of recurrence — and this is just the tip of the iceberg.


Emotions are still raw — even 11 years out of treatment and six years out of my double mastectomy with reconstruction.


I try to keep busy. I work hard. I paint. I write. I care for my daughter.


But I’m always looking over my shoulder. Every body ache assaults me. I wonder, did I strain a muscle, or do I have cancer? My friend Faun died of metastatic breast cancer, and she became aware of it because she had hip pain and went for a “routine” physical.  


Nothing is “routine” I’ve learned. I grieve for her still.


My hip hurts. Is it cancer? 


“No it’s not,” I tell myself, “Stop being such a hypochondriac.” I take Tylenol, and the pain goes away. Ah, I’m feeling more confident about my health. Later, my hip hurts again, and the rollercoaster twists and turns in my stomach all over again.


I put off getting routine bloodwork for almost a half-year after my general doctor ordered it. I am not proud of this. But for six months, I am trembling at the thought of the lab results indicating a new problem. I finally summon up enough courage to get the blood drawn on Friday. I am not afraid of the blood draw; I’m afraid of the results. I am trying to put it out of my mind for now.


I just set up an appointment with my oncologist, two months overdue. It is so painful to pick up the phone and make the call. My heart is racing. The receptionist tells me that my oncologist ordered bloodwork and I should get there early to have it done. I numbly say, OK, but when I hang up, I sob. “Why does he need blood from me?” I keep torturing asking myself. This “perhaps routine” test has been constantly gnawing at me on my mind ever since.


I get a “routine” colonoscopy this year, and the period of time leading up to it is hell challenging, and I spent a lot of time crying about it preoccupied with it. I’m convinced the results will be bad. Luckily, they are good. I’m relieved. For now. Until the next medical worry.


Yes, I’m waiting for that moment when I can feel like a brave and strong warrior. I now know I will never have that feeling of medical and emotional security. Because I have already had breast cancer. And that forever changed things for me.


In the meantime, I’ll continue looking over my shoulders, which carry a crushing burden no one should have to bear. 


For an excellent article on the complexities of survivorship, please read  Darryle Pollack’s article, Surviving Cancer: It’s Complicated

Have you been put on a societal pedestal because of cancer? How do you define survivor? Please feel free to share your experiences.


I’m writing a book titled Calling the Shots: Coaching Your Way Through the Medical System. Please feel free to subscribe to this blog by clicking the orange subscribe button. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

44 Responses to The Burden of Survivorship

  1. Catherine had this to say about that:

    Thank you for sharing this heavy side of survivorship – yes we have survived, and no, we don’t forget what happened and cannot stop looking over our shoulders. Personally, I do feel there is something hopeful in the term ‘survivor’, but when it comes to mixing the idea of surviving and being an inspiration, I become far more hesitant. (There is so much responsibility tied into ‘inspiration’.)

    But ultimately I prefer to focus on my journey and supporting those who are embarking on a similar trial. Labels are labels, but they are not obligations – knowing this gives me some relief.

    • Beth L. Gainer had this to say about that:

      Catherine, you are very perceptive, and you are right about “inspiration” carrying with it the weight of responsibility. I never quite thought of it that way.

  2. The Accidental Amazon had this to say about that:

    Even when we feel ‘good’ we are looking over our shoulders. I managed to get through six months of having (almost) no doctors appointments, except for a visit to the PCP to get an antibiotic for a sinus infection. Then, when I had a visit scheduled with a plastic surgeon last week to talk about options for recon, and another scheduled tomorrow with the breast surgeon for a ‘check-up,’ I started losing it all over again. It’s like a Pavlovian response. My concentration has been like Swiss cheese.

    This burden of continual surveillance is so hard to communicate to people who don’t have to live with it. I can’t say I’ve ever felt particularly brave even once in the last nearly four years of this. Those fleeting moments when we almost forget, when we can laugh or enjoy some ‘normal’ activity that has nothing to do with cancer are always colored with that background noise of trepidation.

    There’s no one word that describes this.

    • Beth L. Gainer had this to say about that:

      Kathi, you are so right about the continual surveillance not being understood by those who have never endured the type of trauma we have. Thanks for your eloquent comment. I’m sorry that you experienced that Pavlovian response with your breast surgeon. I totally get it. It is so very difficult to stay calm when seeing doctors.

      Like you, I do forget about cancer, and I laugh a lot, actually, but as you well know, the C experience comes back to haunt me.

  3. AnneMarie had this to say about that:

    Beth,
    Such raw emotion and testament to the fact that this stuff LINGERS and life is never the same again. We walk around fine and in a moment, three words change us forever.

    I did not see your story about Faun until I clicked the link here. It breaks my heart to read about how your friend was fine and then not and then gone. I am so sorry…..

    I’m waiting, too. I’m five years past chemo and I’m still waiting.

    Much love to you, my dear friend.

    AnneMarie

    • Beth L. Gainer had this to say about that:

      AnneMarie, thank you for your kind, supportive words. They mean a lot to me. Losing Faun was devastating, as it always is to lose a friend. She was young and vibrant, even through her treatments.

      You are 100 percent on target about cancer forever changing our lives. How can it not?

  4. itsthebunk had this to say about that:

    Beautifully written…. sobbed all the way through the post. I hear you, I hear you, I hear you….

    I am a 3X Breast Cancer “survivor” and there are those days I find myself telling myself “I am a badass, I kicked cancer’s butt, blah blah blah.” But, it’s not the REAL ME saying that to myself… it’s no doubt the collective societal voice bugging me to believe it and see myself as that archetype.

    I know what you mean about surviving via self-advocacy and luck. I had a bunch of that…. it was caught early, I had a (mostly) fabulous medical team, all that stuff… I also fought like a banshee to get through it all.

    Meanwhile, as you know so well, survival ain’t for the faint of heart….

    I LOVE your painting.

    Sending hugs and again, many thanks for your great post.

    Liza
    http://twitter.com/itsthebunk

    • Beth L. Gainer had this to say about that:

      Thank you, Liza, for the high compliment. You’ve been through hell and back. You make an excellent point about the collective societal voice telling us that we are the badasses and tough and cancer fighters. I feel that way too, sometimes….actually, more than sometimes.

      I also had great docs, and I also fought like hell. I just get upset sometimes when people tell me how brave I was when the reality is that the fear was suffocating.

      Thanks for your compliment on my painting. If I haven’t done so, I’ll follow you on Twitter.

    • Beth L. Gainer had this to say about that:

      Liza, I’m already following you! I just left you a tweet. I’m blaming my forgetting that I’m following you on Twitter on my chemobrain.

  5. Nancy's Point had this to say about that:

    Beth,
    Yes, survivorship can be quite cumbersome at times can’t it? The whole heroic notion is completely out of whack. I don’t see myself as heroic either. I just muddled through it all the best I could. I still do. There is so much pure luck involved. I love Catherine’s comment about labels. They are just labels. They are not obligations – we do not have to “wear” them in any certain way or even at all. I’m sorry you still look over your shoulder so often. I guess I do too and I think I always will at least be glancing back. How can I not with cancer being such a big part of my past? I happen to think this is actually healthy, at least for me. As Jody from Women with Cancer commented (I’m paraphrasing a bit here) on a post recently, remembering reminds us of the depth of the journey and how precious this moment really is. Don’t you just love that? Thanks for this honest post, Beth.

    • Beth L. Gainer had this to say about that:

      Nancy, thank you for your comment. Yes, heroic is not the term I’d use to describe myself. Catherine did make a great point about labels, didn’t she?

      Cancer is, indeed, one of those things that reminds us of the depth of our journey. It’s a double-edged sword. Cancer has made me stop to appreciate life more, but it also has decreased the quality of my life.

      Overall, I am doing fine. I just have these horrible moments, like so many of us do. Thank you for being a support anchor, my friend.

  6. Nancy's Point had this to say about that:

    Oh, and fabulous painting. I’m very envious of your talent.

  7. Jen had this to say about that:

    Actually, I don’t like the term and I don’t use it. It’s been almost two years since my ordeal (oh, don’t count years or use the cancerversary term either). If I defined myself that way, I’d dwell on it every day, so I don’t. I’m just Jen, an ordinary person who had a bad few months. I don’t want to be labeled or categorized. I mean, technically I survived lots of stuff that could have killed me, but they didn’t…I’m just not going to focus on this any more than I have to…which is really not much at all these days, thankfully.

    (I do feel everyone should make his or her own choice on the matter, BUT think that no one should automatically use it to describe anyone but him or herself.)

    • Beth L. Gainer had this to say about that:

      Jen, you make a good point. I think our society would be so much better off without labels. In reality, just living is a risk, and one could come close to death from a variety of experiences. But there’s something about a cancer diagnosis that knocks the wind out of people. I’m basically loving life and I appreciate all the good things, but this piece I wrote reflects a part of me too.

      • Frank had this to say about that:

        I found your blog heartening. My adcive to anyone facing breast cancer is to stay vigilant. I is now 28 years since my breast cancer diagnosis. Since then I have also had leukemia (AML), a bone marrow transplant and lymphoma. The worst came in 2007 when I suffered a heart block (a result of the radiation after the breast cancer). Thankfully my husband was near by and was able to resuscitate me. I now have a pace maker and some short-term memory issues. I no longer can work. But, I am alive.

        • Beth L. Gainer had this to say about that:

          I’m sorry that I missed this comment. Thank you for your candor, and I’m sorry for all you suffered. I completely agree that one must stay vigilant in taking care of one’s own health. I wish you the best of health and the best of staying vigilant.

  8. Yvonne had this to say about that:

    I am very sorry about Faun, Beth. So unfair.
    As I was reading your post, it occurred to me that there’s a kind of common expectation that we are victorious and somehow invisible all at the same time. I am confounded by it.
    yvonne

    • itsthebunk had this to say about that:

      Yvonne — what a powerful insight…. expectation that we are victorious and invisible…. food for thought.
      Liza

    • Beth L. Gainer had this to say about that:

      Yvonne, thank you for your kind words and empathy. Your insight about us being victorious and invisible is so spot-on. I never thought of cancer “survivors” in that way before. Thank you. Liza, I totally agree that this is a powerful insight.

  9. Lois Hjelmstad had this to say about that:

    I’d like to share a poem with your readers, Beth:

    Good News/Bad News

    the good news is
    there is no immediate
    bad news

    the bad news is
    there is no way to guarantee
    the good news.

    (Excerpted from Fine Black Lines)

    And I’d like to thank you and those of your readers who follow my blog on http://www.loishjelmstad.com. I really appreciate it.

  10. Annie Appleseed had this to say about that:

    As a chemically-sensitive woman I refused chemotherapy when diagnosed in 1993. I sought and found immense amounts of information about natural strategies. I founded nonprofit annieappleseedproject.org to inform others – and still docs and the system refuse to inform people when they become ‘patients’ of the various possibilities that might prevent the health issues so many suffer from. Cancer does not cause neuropathy, chemobrain, nausea, etc., it is the treatment. We advocated and lobbied for money for more. And that is what we got – more treatment, but NOT more survivorship (whatever we need to call it). Same % of us die from breast cancer annually, around the same # diagnosed late stage as well. Live and learn.

    • Beth L. Gainer had this to say about that:

      Annie,

      Thank you for your comment. I’ve learned that just as no two cancers are alike, no two patients opt for the same road toward treatment. The key is for the patient to take the road that is right for her/him. Thank you for sharing your story.

  11. Marie had this to say about that:

    Stunning painting Beth, I looked at it for a long time before reading this excellent summary of what it means to live in the confusing limbo space of “survivorship”

  12. Jan Baird Hasak had this to say about that:

    I agree with Marie: that’s a stunning painting. How can we who’ve had cancer not identify with that woman who could be any of us? I don’t like the word survivor, but I understand the sentiment behind people using the term. It surely beats victim or sufferer. I go through that rollercoaster all the time. The latest was another chest pain scare. The pain persisted, so my mind immediately went to the cancer scenario. The doctor has confirmed it’s not cancer, but that doesn’t mean an ache won’t come in the future that IS cancer. Thanks for this poignant post. xx

    • Beth L. Gainer had this to say about that:

      Thank you, Jan, for your compliment on my painting!

      I’m so sorry about your chest pain. It’s so understandable why it scares you. It makes sense. Thank you for sharing your life with such candor and grace.

  13. Idelle Davidson had this to say about that:

    Hi Beth, there’s not a day that goes by that I also don’t think about cancer, and it’s coming up on 7 years NED for me. And just this year, I’ve been procrastinating about following through on my screening appointments. I think we reach a level of fatigue where we just don’t want to do “THIS” anymore. Thanks for your thoughtful piece and for being there.

    • Beth L. Gainer had this to say about that:

      Idelle,

      Thank you for your comment. I totally get it, the fatigue as you put it so well. Yes, I often feel I don’t want to do “this” anymore, too. It’s amazing how universal the challenges of survivorship are. Thank you for your reply.

  14. BreastCancerSisterhood.com had this to say about that:

    LIke you, I’ve been hyper aware of every little thing and afraid of upcoming scans, blood tests and doctor visits, always fearing the worst. That is until James died, and then all of those fears seem to have stopped. When James was a live, I feared dying, mainly because I didn’t want my precious time with him cut short. Now that he’s gone, that’s not the case. In many respects, he was my life. So if someday, my test results aren’t good, in my mind, the worst thing has already happened to me.

    XOXOXO,
    Brenda

    • Beth L. Gainer had this to say about that:

      Brenda,

      I admire you on so many levels. You have such great perspective on life. You have been through so much and still are able to put things into perspective. I’m actually not afraid of dying, as much as suffering.

      Thank you for your insightful comment, as always.

  15. Beth L. Gainer had this to say about that:

    Gayle Sulik wrote:

    “Thank you, Beth. This is a topic heavy on many people’s minds and bodies, as your compelling painting expresses. I’m glad the complexity of survivorship is finally getting some public airing. I write about the prevalence of “she-roic” survivors in ‘Pink Ribbon Blues,’ which seems to contribute to the general lack of understanding about what it means to hear the words, “you have cancer,” and also to that victorious yet invisible status yvonne refers to. There is such pressure be transformed somehow from breast cancer…as if the disease and its aftermath don’t exert enough pressure already. Lots of food for thought. –Gayle Sulik”

    • Beth L. Gainer had this to say about that:

      Thank you, Gayle, for your comment. Survivorship is very complex, as we all know. Yvonne’s comment was indeed profound. I loved Pink Ribbon Blues and learned a lot, especially about the she-ro. Unfortunately, I all-too-often find myself bearing the burden of others’ expectations: they are the ones who call me a hero. I’m proud of myself for being a great advocate for myself, but getting treated for cancer was not heroic by any means. I was scared — and very vulnerable.

  16. Renn @ The Big C and Me had this to say about that:

    Love the painting, Beth! You are very talented!! And I SO get the procrastination thing. Half of me has my head in the sand, the other half is forever barreling ahead. (Hard to tell which one of me will appear on any given day!) Thanks for writing about what so many of us are feeling — and fearing.

    • Beth L. Gainer had this to say about that:

      Renn, thank you for your compliment on my painting! I’m glad this posting resonated with you. As you know all too well, it is difficult to keep seeing doctors and getting tests on time — all because of cancer. Thank you for reading and commenting.

  17. Ari had this to say about that:

    Hello, my name is Ari, I am a survivor (so far…) of two cancers, a widower of a cancer victim (now re-married..) and is dedicated to fighting cancer, and helping others do so.
    I lived in Toronto, Canada (my family is in southern California), and last year, after marriage, I moved to the Philippines. I am majority owner of a Dialysis clinic, and built a unique cancer clinic, the one I dreamt of having when my first wife was struggling. I took her to Mexico clinics twice, for treatments (which were very successful!), talked to dozens of physicians, and always found lack of properly equipped clinics, which could do a lot better if they were.
    Along the way, I have gained insight of how proper Hyperthermia should be applied. This is a method which doubles the success rate of conventional therapies, and alternative ones as well, provided it is done properly. I have purchased the most powerful device for this, and added two other types of devices, which when applied in the right order, prevent a process of DE-sensitizing of cancer cells to the effects of specific frequency hyperthermia. We also do mild whole body hyperthermia in order to strengthen the immune system (with no side effects),and help reach the right thermo-therapeutic levels within the tumour.(the right temperature simply destroys the tumour…). There are also other aspects to this, biological ones, which for lack of commercial incentive (UN-patentable..) is not pursued by multinational pharmaceutical corporations which control all medical research in the field.
    I also introduced other forms of immunotherapy, and alternative cytotoxic elements, such as Helixor, a mistletoe extract, which has three times better success rate then most chemo agents, without the side effects.
    I can give information about many clinics I learned about, (mainly in Mexico and Germany
    If you are interested in getting free advice, please feel free to contact me, @ advancedcancertherapies@yahoo.com
    Thanks,
    Ari Idan

  18. Knock knock - it's cancer! had this to say about that:

    First – the painting is stunning!!

    Second, amen to saying exactly what you said. I feel the exact same way. I am only a year out and of course, I keep waiting for a time when I no longer will feel as ‘raw’ about it all.

    Reading your post makes me feel that even a decade down the road, this feeling may still linger. I wish people acknowledged that – too many people display the ‘you beat it, so why so glum’ attitude.

    I’m not glum. I’m afraid. Those are 2 different things.

    • Beth L. Gainer had this to say about that:

      Thank you for your kind words about my painting.

      I guess it’s less raw as time goes on, but it is always there — the fear — I think. One needs to just hang in there. People shouldn’t say “you beat it, so why so glum” types of things, but they do. I’ve had a share of these types of comments myself.

      Thank you for your comment.

  19. Tami Boehmer had this to say about that:

    Obviously you hit a nerve with this post, Beth! I can certainly relate to all the fears you express. There are days I feel “normal” and a pain will come up and fear will come rushing in.

    I find the best remedy is prayer, staying engaged in my life and in the moment, and focusing on gratitude. Some days, all I can do is distract myself with Facebook and TV. That’s OK, too. We are all human; not heroes. Let’s save that for the big screen.

    • Beth L. Gainer had this to say about that:

      Tami,

      I think you’re right about prayer and living in the moment and gratitude. I’m always trying to get back to being centered and, as you say, some days are easier than others. And AMEN to the fact that we are only human, not the heroes so stoically depicted in the movies.

  20. Beth L. Gainer had this to say about that:

    Ari, Thank you for the information and for reading my posting.

  21. Lena had this to say about that:

    Wow, I’m so glad that I found this page tonight. I have seven more radiation treatments left and then I am done my breast cancer treatment. I’ve been a wreck dealing with this survivorship stuff. You put into words everything that I am feeling. Thank you for writing this.

    • Beth L. Gainer had this to say about that:

      Lena, I’m so glad you found my blog. And I’m glad that you are nearing the end of your treatment. That is wonderful! The survivorship stuff is really difficult, and every person handles it differently. However, cancer aftermath is usually a force to be reckoned with. All we can do is live the best quality lives possible and cope with the demons as best as we can.

      Thank you for reading and commenting.

Add Your Comment, Feedback or Opinion Here

Your email is safe here. It will not be published or shared. Required fields are marked *

*

You may use these HTML tags and attributes:

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>