Follow the Butterflies

Nancy’s Point today is remembering her bilateral mastectomy.  She’s also wondering if a day can go by without thoughts of cancer.  I’ve been pondering that myself lately, as the three year anniversary of my diagnosis on May 1, has come and gone.

My head is still very much in the cancer world.  The anniversary of my own bilateral mastectomy is June 22nd.  I can’t imagine now, how I was a functioning human being in the days between those two events.  I just don’t know where I found the ability to get out of bed each day, but I know I did it.

In those days my oldest son was playing in the local T-ball league and I took him to games.  I remember standing on the sideline in the early evening light with my secret while he played.  He was also finishing up preschool then and I sat among parents watching their little ones dressed in cap and gown claim their diplomas, dreaming of a future, while I held my secret close wondering what was still to come.  What was yet to be.

Somehow, it’s three years later and the other day I was driving to my breast surgeon for a routine visit.  My son’s spring concert was later that evening and I had a concern to discuss. Things seemed eerily familiar.  What turned out to be a scar from one of the mastectomy drains, had me in a near panic.  Until I knew for sure what that ridge in the skin that I somehow never noticed before, turned out to be, I imagined the worst.

I saw no possible way this visit would turn out well.  I thought for sure I’d be scheduling an MRI or worse, a biopsy, as soon as possible.  And I wondered, as I drove in the rain, as I did the day I got my diagnosis, how would I handle it?

How could I sit there and hear those words, “scans,” “biopsy,” “cancer,” all over again?  I didn’t believe I could.  There in the car, I knew I wouldn’t be able to handle it.  The last three years were such a struggle to climb out of the hole cancer dropped me in, there was no strength left to do it again.

In the midst of planning a good summer with my boys, my mind no longer envisions warm, sunny days, road trips, movies.  I no longer go there.  How could I make plans…what if its come again?  Everything goes out the window, life comes to a screeching halt…again.

I was driving alone.  Who would pick my crumbled heap off the floor when he said the word?

Where was the bravery so many talk about?

Certainly not riding along with me on this day.  I felt like a sissy.  Thinking I couldn’t handle what might come my way.  How could I not?  What choice would I have?

My surgeon knew immediately what it was.  Drain scars?  As soon as he said it I knew in my bones, he was right.  The one scenario I never imagined, of course, the innocuous one.  He spent the next five minutes reassuring me, reiterating how positive he was, without a shadow of a doubt… But I still didn’t breathe until he left the room.

I knew then, I could never truly live my life without thoughts of cancer.  It’s stronger than my will.  Its very nature sucking me in like a black hole time and time again, with every symptom, every run of my imagination.  It’s exhausting.  And sad.

Even when the news is good, when it’s the best possible news, as on this day.  The emotional roller coaster is draining.  It’s just not that easy to go from panic with entire visions of cancer playing out in my head to… All’s fine.  Go home.  Live your life.

I’m grateful for the good news that day.  I know some people never get such a reprieve.

I wish I knew how to put cancer in a place where it couldn’t haunt me.  Maybe the answer is more time.  Three years is not long enough to get a day free of cancer thoughts.

Maybe I just need to try harder to let it go.  Let the good win out.  
Follow the butterflies, not the spiders.

20 thoughts on “Follow the Butterflies

  1. That is an emotionally exhausting experience – and you’re right, even though the news was good, it still hits like a brick wall and dredges up those past feelings. Maybe the answer is time, I’m not far out enough to know . . . but I hope that’s the case for all of us. And sharing – we’re huge advocated for sharing and conversation at our page because it makes moments like these just a wee bit easier. Sorry you had that scare. Glad it turned out to be fine.


  2. Thanks for reading, Catherine. I agree with you on sharing. Doing that here and in the occasional support group helped me more than anything else. Keeping it all in is never the answer. I checked out your page and think it's great. I added it to my sidebar. xoxo


  3. Stacey, Thank goodness it turned out to be drain scars! Your fear was entirely understandable. I've been there. I don't think there will ever be a day when I don't think about cancer either. Some people say they get to that point, but I just don't see it happening for me. Too much baggage – past, present and future if you know what I mean, and I think you do. I've come to the conclusion that I will handle whatever is thrown my way down the road, or at least I'll try to. I'm not at all sure HOW I'll handle things if the worst case scenario plays out, but that's OK. I just know that somehow I will. Whatever happens, this is my life to live. Thank you for once again sharing so honestly about your fears, Stacey.


  4. Wow, I still think it's amazing that Nancy, you and I had our surgeries around the same time. I had my mastectomy on June 19, and this year it will be 16 years behind me. I can still see my two round drain scars. I can still remember the surgeon pulling the drains out…yikes! Those fears of recurrence still remain, but they are less sharp and less often. Three years after my mastectomy, I had to have another surgery to remove uterine fibroids, and I was extremely fearful that they would find cancer again, especially since I was told that one of the side effects of Tamoxifen is uterine cancer. It was a very difficult and fearful time in my life. Hang in there! Slowly but surely the roller coaster will slow down.


  5. Such an eloquent post … eerie that I have the exact same thoughts (and I just marked 3 years from my bilateral in April). I do hope you're right that time is the answer. I know the fears are irrational and yet they are truly exhausting. And the guilt that I should just be happy knowing that some women would trade seats with me in a heartbeat only makes it worse. I wish they would develop some kind of survivorship workshops. The ones I have tried have been ineffective and feel like extensions of the support group which sucked me into negativity. Glad to see I am not the only one with these feelings. XO


  6. Stacey: I can relate to everything you have written! It's like we are walking on what appears to be solid ground but in reality it is just loosely packed dirt covering a gopher hole. We can fall in at any time.(We just discovered we have a gopher in the back yard. We thought the dog was digging up a bone. But when we brushed away the mound of what we thought was solid dirt — there was the hole. Hence the gopher/cancer analogy!)I don't think you need to try harder at all. Just be.xoxo


  7. Stacey,Your posting resonated with me on a very deep level. I've been there. I've been given false alarms that scared the living daylights out of me. What you went through is normal for the person who was afflicted with cancer. Like Renn says, you don't need to try harder. You are doing the best you can, really.Will there ever be a day when we don't think of cancer? For me, it is \”no.\” I'm 11 years out of diagnosis and chemo and radiation, but 5.5 years out from my preventive double mastectomy, which was prompted by a scare that sent me reeling. Luckily, the biopsy showed the \”mass\” in question was scar tissue. Like you, I was lucky to get that reprieve, but I sought and fought for that double mastectomy. I think about cancer every day, but I don't let it dominate my life.


  8. Hi Nancy, I certainly do know about baggage and I believe it's why I can't let go either. I've just seen too much. I even mentioned to my oncologist how my mother was fine for 12 years, until she wasn't. But, no promises given, as you say, I'll just have to deal and figure it out somehow. Today…I'm choosing not to dwell on it. I hope you don't either. Thanks for being there, as always.


  9. Ginny, I can't express enough how awesome it is that you're 16 years out. That's something for me to focus on. I remember the drains coming out! One was so far up near my shoulder. I felt every inch of it when the nurse pulled. I'm cringing now just thinking about it! Thanks for the positive outlook. It's nice to see.


  10. Thanks in advance for the hug, Suzanne. That's a great thing, but I'd love to hear what you have to say, too. Thanks for reading. It means more than you know. xoxo


  11. Hi Anonymous, I'm shaking my head in agreement as I read your comment about the guilt. As if all the fear isn't enough, there's guilt thrown in because I know I'm lucky in comparison to some and I should just shut up and deal. Which, I did consider doing…not writing this post, but in the end, I thought there might be others like me, so I put it out there. Thanks for writing. I think you're right about survivorship workshops. Someone needs to teach us how to move on. Hang in there.


  12. Renn, I love your gopher metaphor. How perfect is that? We're being done in by gophers. That's how I'll envision this feeling from now on and it makes me smile. Thanks for that. xoxox


  13. Thanks for writing, Beth. I sometimes think I'm doing ok, but then the slightest thing tips me the other way. I'm so glad your \”mass\” was \”only\” scar tissue. I can only imagine how terrified you were. I like what you said about not letting cancer dominate your life. I'm with you on that, starting right this minute! I'll get back to you tomorrow to see if it lasts. 🙂


  14. It never lets go, Stace. Never. After nearly four years, I'm just now finding a few moments of reprieve, when I feel like maybe the burden is a tiny bit lighter. But The Stalker is always in the background, making me cherish and savor these moments in a way I never would otherwise. All we can do, all we ever do, is put one foot in front of the other. It's not about bravery. It's because we are, in fact, still here, alive, living life however we can, like flowers in a storm, turning stubbornly toward whatever light we can find, searching for butterflies.


  15. Oh, Stacey, I was just there; in fact, I am still there. I had scanxiety a month ago after continuing chest pains. With a history of cancer, I assumed these symptoms were signs of the cancer traveling to my lungs or kidney. A chest x-ray and urine sample ruled out recurrence, pneumonia and kidney problems. I was ecstatic about the relatively innocuous diagnosis of inflamed cartilage. Yet the pain persists despite the ibuprofen doses recommended. Will the scare that is cancer ever subside? Every ache and pain I feel panics me, even after nine years from my diagnosis of recurrence. I'm so glad yours turned out to be benign. We just never know, do we? Thanks for all your heart-felt posts. We all appreciate them. xx


  16. I love this post! Every thing you wrote, I get. It can be so draining to live with this monkey on our back, always worrying that it's back. Thank goodness we have each other to lean on during the scares. So glad yours was benign. Thank you for writing so honestly about this.


  17. Thanks, Kathi. I find it encouraging that you ocassionally feel the burden lifting. I hope there's more of that to come, for all of us. xoxo


  18. Jan, I'm so happy to see your pains turned out to be nothing serious! It's so tiring, isn't it? Take every normal worry, then throw cancer on top of it… it's so hard, but at least we can complain to each other. There's some comfort in that. Stupid cancer.


  19. Hi Nancy, thanks for reading. I know you get it and I don't know where I'd be without you and all the ladies in this bizarre comunity we share. Banging my head against the wall someplace, no doubt. Hugs to you. Stupid monkey.


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