Be forewarned: This is a breast cancer rant.
I don’t usually give in to the level of fear and obsession I’ve been feeling lately, but I want to get it out and onto paper so that I can move on.
I think about cancer every day. I worry that I’ll have a recurrence every day.
The fear sits in the back of my mind, lurking in a corner, coming out to haunt me right as I’m about to fall asleep or when I’m feeling most vulnerable when I wake up in the middle of the night. I am so sick of thinking about cancer and the possibility of a recurrence, that I have to put it into words to get it out of my head.
Fear is a strange companion. It’s been growing in me, kind of like the cancer that started in my left breast 4 1/2 years ago, and is festering in my mind.
I can’t seem to avoid thinking about cancer. I see it around me every day, everywhere. There are articles about cancer every day in the news, there are multiple postings about it every day on Facebook, Twitter and online.
It seems every day there’s another article about how to prevent cancer, or what causes cancer, or what you should eat to prevent cancer, or what you shouldn’t eat to prevent cancer, or what age you should have your kids so that you won’t get cancer, or where you should live so that you won’t get cancer, or where you shouldn’t live so that you won’t get cancer. There’s so much information overload that it’s overwhelming.
Before I had breast cancer, I thought I was healthy. I ate well, never had a weight problem, kept active, didn’t drink or smoke, had tons of energy and hardly ever got sick with anything more serious than a cold or sore throat. So I was really surprised when I found the lump that turned out to be breast cancer.
But in retrospect, I realize that when I was younger, my life wasn’t as balanced. During college, I spent one entire summer stripping toxic paints (and breathing in toxic fumes) off the walls in the dorms as a summer job. Those same dorm rooms had asbestos (a carcinogen) ceilings which I breathed in for a full year in my junior year.
I drank alcohol about 3 nights a week in my 20’s and 30’s, which could have contributed to my getting breast cancer. I smoked almost a pack of cigarettes a day for about 2 years in my mid 30’s; no explanation needed.
I had my kids late in life, which has been shown to have a direct correlation to breast cancer. I live in New Jersey, one of the most polluted states in the union, with who knows what kind of toxins floating in the air that we breathe and I currently live in an area of the state known for the high incidence of radon (another known carcinogen) naturally found in the earth.
I obviously did something, ate something, ingested something, smoked something, or imbibed something to get cancer. It’s a slippery slope trying to figure out why my body turned on itself but I can’t stop my brain from trying to figure out what I did or what I didn’t do, that contributed to my getting breast cancer.
I guess what I’m saying is that I somehow feel responsible and at fault for having breast cancer. And afraid, because now, 4 1/2 years post treatment, I really don’t feel like I have a clear understanding of what I should be doing to try and prevent it from ever coming back because there are so many conflicting schools of thought.
As a layman, I have no real understanding about what causes breast cancer, other than what I read. And after all the reading, what’s clear to me is that no one really knows with any certainty what causes cancer or how to cure it. In a hundred years, we’ll probably talk about chemotherapy, radiation and mastectomy the way people now talk about blood-letting and leeches.
So I try to do the right thing, although I’m not exactly clear on what the right thing is. I eat pretty healthily but I never feel like I’m eating exactly the right foods, I’m always second guessing myself. When ever I eat something “bad” for me, like ice cream which I adore, I feel guilty. Or if I have a couple of glasses of wine with dinner, which I also love, I feel like I’m tempting fate.
Man, it’s exhausting. I’ve been trying to stop thinking about it, but it’s been really in my face lately.
In the last week, I’ve finally come to a sense of calm about it. I am who I am. I live the way I live. I have tried and will continue to try to live as healthily as I can, but I can’t monitor every single thing I eat, or restrict myself from never having a glass of wine with dinner or completely cut all sugar, dairy, meat and wheat out of my diet.
I finally decided this week that I’m just going to cut myself a break and realize that I didn’t technically bring this on myself, it’s a pretty random occurrence; stuff just happens. Life is short, I’d rather spend my time enjoying it than worrying about every single thing I do, or eat, or don’t do or don’t eat.
It reminds me of this song “Cancer” by Joe Jackson, with the lyrics “Everything gives you cancer.” For your viewing pleasure:
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It is a pretty random event; as a former cancer researcher, I confess that we’ve learnt a lot, but we have so much more to learn! You’re quite right about relinquishing guilt; please don’t feel at all responsible for what happened to you! Luckily, at least breast cancer is totally curable if caught early! š
I didn’t realize you had done cancer research – that’s fascinating. And, yes, it sure seems like there is a lot more to learn about how it occurs and how to prevent it!
Oh Claudia. I wish I had some wise words to share, but I don’t. I have fortunately never had a similar experience and can’t imagine it not haunting my every day. However one thing that I can say is that there is nothing that you did to bring it on yourself. Cancer is not controllable and if there was a clear cause, it would have been identified. It’s just downright plain bad luck. Big hug.
Hi Jodi, I have to say that writing it down has already taken some of the obsession out of my brain. I tend to think too much and worry too much but putting it in writing and on a page gets it out of my head and into the universe so that it frees it up for me. Thanks, as always, for being in my life š
I spent this morning with my son at Sloan Kettering for his monthly chest x-ray for testicular cancer. I passed a nurse in the hall who knows me by my first name because last year she was my dad’s nurse for his lymphoma. Last week I took my mom to Mount Sinai to find out what her newly discovered papillary cancer was about. And two years ago I lost my uncle to pancreatic. Yes, I am sick and tired of it too, Claudia.
But what I do know is that life happens, and if we drive ourselves crazy we’re letting cancer win. We can never do that. So live life the best you can, one baby step at a time. And I’ll take those steps alongside of you. Every single day. For the rest of my life. I have to. My son has to be tested for the rest of his life.
Oh boy, Cathy. You have so much on your plate, I can’t imagine how you handle it all. But you’re so right, that’s the thing that got me to write it out, I don’t want cancer to take over my every thought, if I let it do that it WINS. And I would much rather focus on the good stuff than the bad. Thanks for letting me vent. Hugs.
Oh my friend. I am sorry that this disease even after all this time still has a hold. I feel the same way sometimes and it makes me mad! We are both aware of cancer everyday because when we look in the mirror at our scars, we are reminded. I guess I try to focus on the positives (as I know you do) that came out of it which makes me feel like I’m not giving Cancer so much control. I met you and made a good lifelong friend who “gets” it. I appreciate things so much more, a sunrise, how green the grass is. I try new things that I might not have done before like joining a flash mob or belly dancing. I’ve reconnected with people. I don’t stress about things as much as I used to because really, what good would it do? I feel like living the rest of my life with those people who are important to me as happily as possible, is the goal. And along the way I will savor the slice of thin crust pizza and drink a good glass of red because what good would it do not too? Fuck Cancer!
You’re the best. Yes, you and I are now BCBFF’s because of all we shared (remember we told my daughter that when we were in Cancun together?) together. I love your ability to see the positive and always be upbeat about it, so thanks for reminding me š I don’t know why the last few months have been so weird for me, before this I was really feeling positive as you know, I think it’s just a phase I’m going through but I so appreciate you as a friend and your strong, positive influence. xoxo hugs…..and hell yeah – Fuck cancer!!
Hi Claudia,
The blame game is a trap. Don’t fall into it. You are not to blame for getting cancer. Even if a person does every darn thing right, cancer can still happen. Of course you know this too, but sometimes we do need the reminder. I’m glad you have found a sense of calm. We can’t worry about every bite we do or do not take or get bent out of shape if we didn’t get our exercise in or whatever… Day by day we do the best we can. Why is this so much easier said than done? I wish I knew. Hope it helped getting it out on paper. I think about cancer every single day too. Oh, and I love a good rant now and then! I think it’s a healthy thing!
Hi Nancy,
Thank you for reminding me that the blame game is a trap – how simple yet how true. It DID help me, putting it on paper. If I can get stuff out of my head and onto paper, it helps and I already feel a lot more calm about it. It just seemed like all I was doing was living life to try and prevent a recurrence, which was a sucky way to live! Thank you for understanding, my friend.
My husband has serious health problems and his heart has stopped several times now. I think about the possibility of him dying EVERY DAY. Sometimes it’s a fleeting thought and sometimes it’s deeper and more overwhelming. I try to push the thoughts away, but they still come, so sometimes I just let my mind go there because I think, perhaps, it’s helping me prepare for the inevitable.
That’s not to say that you getting cancer again is inevitable. I don’t believe that for a minute! I’m just saying, I think this is how you are processing what you’ve been through. Does that make sense?
I think you’re right, Jennifer. It is my way of processing through the whole experience. And, I’m so sorry that your husband has such serious health problems. Usually I can compartmentalize it and actually really happy and relaxed about it, but for some reason the past few months have been weird and I haven’t been able to stop the chatter in my brain. Hoping we both learn to enjoy life to the fullest each day, because DAMN it’s short!
That’s exactly what my husband teaches me: to live each day as fully as possible because life is short!
Such good advice, he sounds very wise š Hugs.
This would scare me, too. But I have a dear friend who is now 15 years past her surgery. It no longer haunts her as it did, even though she knows anything could happen. She lives the best way she can, no judgment. We all do what we can. Blessings to you. I’ll keep you in my prayers.
Thank you, Carol. These words mean a lot, especially that you have a friend who is 15 years post surgery. I so appreciate your note and prayers.
dear Claudia,
I still remember when I first found your blog and the feeling of knowing just how much you are helping others with your writing, done so eloquently and being so authentic. I only “know” you through cyber space, but I treasure being able to read, feeling a definite connection, and the gratitude that fills my heart for your honestly, your humor, your deep love for your family and your friends, and for getting a peak at the things you enjoy doing. you are a good woman, you are a wise woman, and you have been in a place where one would ever wish to be; I think that sometimes we are all prone to delayed reactions from a cancer experience. our lives continue to evolve, and as we look back we may see things in a different light, wonder how we made it through all the initial shock and dreadful treatment, and yes, wonder just what the hell took us to fucking cancerland. sometimes looking back is even more scary than it was when we were actively going through it all. so it’s natural to have the thoughts of “what ifs”, simply because we’ve managed to attain some semblance of balance and happiness and fulfillment – and we so want that to continue, that marvelous re-invented life we’ve worked so hard to live. I am so glad you were able to write it all out – I do that, too, both with the cancers and widowhood – I call it, “writing for my life”, and sometime a good bitching rant is exactly what it takes to exorcise that damnable demon that makes us crazy with all the whys, what ifs, shoulddas, coulddas that swirl around our poor brains. sometimes it feels like it’s hard to even breathe, and very hard to just let it be. but with reaching out and sharing what you have been going through is a good thing – and I will hold you close to my heart and BELIEVE that it will bring you peace and respite. so just breathe…and FUCK cancer.
much love,
Karen XOXO
Dear Karen,
My dear friend, thank you for saying just the right things when I’m feeling down and can’t see through my fears. We’re both such “glass half full” kind of women, and I USUALLY have that mentality, so thanks for reminding me. Just expressing it and being acknowledged by someone who’s gone through a similar experience help me get grounded and back on track to being the normal positive person I am. Fuck cancer for sure and hugs xoxoxoxoxo
Yep. Cancer sucks. We can’t know exactly why it happens to some and not to others. We can’t blame ourselves or others. All we can do is live balanced and do our best. Good for you for letting go of self-recrimination and second guessing! Enjoy life!
Thank you – I really appreciate the note and Yes! Enjoying life is my best antidote to the fear that creeps up every now and then.
Claudia, I wrote a blog post about 2 years ago about trying to figure out what I did to bring breast cancer into my life. I came to the conclusion that I did nothing wrong. And neither did you! I think breast cancer and cancer in general is much more complicated. (Here’s the link: http://thebigcandme.blogspot.com/2012/04/its-not-my-fault-i-got-cancer.html). PS: I was diagnosed 3 ½ years ago. And the fear and confusion comes rushing back each time I step through those oncology doors for my 6-month checkups. I lose sleep for a week before and after, and conjure up all manner of bad news. We have to learn to live around the fear. It sucks!
Hi Renn – I think I remember that post of yours. I’m going for my next 6 months checkup at the oncologist in 2 weeks and that might be what brought on this recent fear and panic, but I have to say after writing it all out, I feel a lot free-er. We DO need to live around the fear and not let it stop us – otherwise cancer wins. Thanks for reading and I LOVE your blog – you’re such a positive influence.
Yes. This. I also blog on this topic, I call it “The Fear” quite a bit. Even as I approach 5 years out, yep, still have the stupid fear. Glad you’re finding some calm with it. We can’t blame ourselves. I’m finally coming to realize it’s basically a crap shoot. Love your blog & love a good rant.
Hi there! Just checked out your page and saw your most recent post which of course, I can certainly relate to. Hope you’re in a better frame of mind by now, for me it comes and goes. And yes, once in a while, a good rant is most definitely in order! hugs.
Yeah, it comes & goes…but sometimes it just gets the best of me. I probably have 25+ posts on this topic. Even reblogged a couple of lovely bloggers I see here in the comments. Rant away, I’ll rant right there with ya! xx
I write a lot of posts about this very thing. No matter how much I say I don’t blame myself I do, and no matter how much I resent having to cut things I enjoy out of my life (coffee, wine) I do that too. And I think about cancer every day and worry about recurrence all the time.
The whole coffee thing is yet another worry! I swear, every other day I read that something causes breast cancer – I’m now just going to eat and live my life the way I want to. I’m going to be as healthy as I can with the info I have and stop second guessing my every choice – it’s just too exhausting! I hope you find some peace of mind, you didn’t do anything to cause it, and life is too short to worry so much. All my best to you and hugs.
I write about this all the time and still blame myself, and no matter how much I hate giving up what I love-wine, coffee-I do that too. I worry about it coming back all the time
I write about this all the time, and still blame myself. And still do “preventative measures” although I hate giving up wine and coffee. I worry about cancer’s return all the time. -Cancer Curmudgeon, anotheronewiththecancer.wordpress.com (sorry, blogger never lets me comment using wordpress function)
Hi Claudia, boy could I relate to your excellent post. I’m 13 years out from diagnosis and treatment, but 8 years out of a prophylactic bilateral mastectomy. The latter was because of a scare on an MRI and, with dense breasts, I figured enough is enough.
I totally get what you’re saying. Like you, prior to diagnosis I was healthy: never drank, I exercised, at the right foods, etc. But I was also exposed to toxins and wondered (and still do) whether they were the culprit. My grandfather was a painter and worked with asbestos without protection, and he never got cancer. So nobody knows what causes this disease.
Do not blame yourself. It’s not your fault. Nobody knows why some people get cancer and others don’t. Fear is also a companion of mine, but I’m learning to contain the beast.
By the way, I wrote a post on cancer and how society blames us for getting breast cancer. If you want, you can read it here: http://bethgainer.com/breast-cancer-and-the-blame-game/
Hi Beth, Congratulations on being 13 years out from your BC experience. You’re absolutely right, no one knows what causes it and I’m back to feeling that it’s not my “fault” and that things just happen in life. It’s how we deal with the things that come at us, that make us who we are. I feel very lucky to be alive and to be able to have seen my 18 year old daughter graduate from HS last Friday night! I really appreciate your comment and the fact that you read My Left Breast, it means a lot to me. Hugs xo
Wow, it’s so hard to not blame ourselves for things, isn’t it? Cancer sucks so much. I know way too many people with it right now, including my biological mother who had a double mastectomy in December. Both of her sisters had breast cancer as well so although my mammogram was ok this year I definitely know the fear. It’s really not your fault though and I’m so glad you’ve found a sense of calm.
Kristi, I’m so sorry to hear about your mom and aunts. Thanks for your note and for reading My Left Breast xo
So, I have metastatic breast cancer to my liver. I guess I am living your worst fear. Yes, I know I will not live very long but I adore living life, even the negative stuff. I am at peace. I don’t want to die young but I will – I’ll miss weddings and grandchildren and growing old with my husband. But that is amorphous stuff, promised to nobody. What is real is this moment and the way we experience that.
I feel sad because from my perspective all this time you spend in fear and worry and examining what went wrong is wasted time. All there is is the moment we are living – the future is your imagination and the past cannot be changed. There is nothing you can do to change anything, so fear, worry and self-recrimination is wasted time.
I wish I could take a magic wand and shake it above all your heads and let you see things from my viewpoint. It is natural to feel fear, sure. It is natural to wonder why this happened to you. But it needs to fade, or you get stuck. Every minute you spending wondering what you did wrong or what may happen is a moment you are not living well. Don’t take away your own life because of fear. Try to enjoy your health now, the sunshine on your shoulders and the days you have been given.
*hugs*
Hi Ann, I was traveling for a work conference so haven’t had a chance to respond but I wanted to let you know that your note really made an impression on me. First off, thank you for your honesty! And second, thank you for being so upfront about your life now, post metastatic breast cancer. I have rarely heard from anyone online who is so positive about life, with mets. So, I appreciate hearing it from you, because that would be how I would want to approach a similar situation if I ever have a recurrence. I have to say that since I wrote the post, I’ve been much less concerned, and am feeling a lot “lighter.” I have so many things to be grateful for – 2 great kids, a caring and supportive husband, a career I love and my health! So, thank you for the reminder and the positive energy. All my best to you. Hugs xo
Cancer sucks mightily. Thank God my youngest son beat it over a year ago. But my mother in law didn’t and just the other day, I learned that a friend of mine succumbed to lung cancer. I didn’t know about the correlation between breast cancer and having children later in life. I had my oldest son on the cusp of 35 and my youngest at 41. And New Jersey. Yes, beautiful, toxic Jersey. So many variable, so many things we know and don’t yet know. So many things that are both in and out of our control. It’s mind boggling. And I”m glad you’ve come to a place of calm about it. Because it’s more than anyone should have to bear on a daily basis.
Thanks, Linda. I’m glad your son beat it, and am really sorry about your mother in law and friend, that sucks.
Yeah, the thing is there are so many contributors that at some point, you just have to stop the madness, and decide to live your life. Which is what I’m doing now. I sincerely try to eat well 90% of the time, and exercise a bit here and there, but I can’t just change everything in my life for a random occurrence. Since I wrote the post, I’m feeling much less overwhelmed by it, and in fact just had my 6 month oncologist checkup yesterday and all was fine, so it’s really, for me, just keeping my mind clear and looking forward instead of back. And don’t get me started on NJ! š I’m a Jersey girl, so have that whole Jersey love/hate thing goin’ on. Thanks for stopping by, I appreciate it!
Claudia — so lovely to read you. And so sorry about the cancer specter. You handle it with humility and grace.
Thanks, Shannon! And….the cancer specter has receded now that I’ve written it out of my head and onto the page.