I'd much rather just be tiptoeing through the tulips...

Tiptoeing Through Survivorship

As I mentioned in a previous post, it’s now been three years since my breast cancer diagnosis. It’s been three years since the shit hit the fan, or to put it more delicately, since the dominoes starting toppling.

Actually, the domino effect began in 2004 when my mother was diagnosed, but there are only so many dominoes one can keep track of, right?

This year the exact date (April 29th) came and went very quietly. I’ve since been waiting for some profound words to pop into my head that I could eagerly share with you, but so far, nothing much is coming to me…

Where the heck is the great life lesson anyway?

This year I didn’t talk about that day; in fact, I didn’t even mention it in passing to dear hubby (and I don’t think he remembered, which, by the way,  is just fine with me). I’m not even entirely sure why I didn’t bring it up.

Did I think about my diagnosis this year on that date?

You bet I did, but I did so by myself.

It’s almost like I’m tiptoeing around now – trying to walk quietly through survivorship.

I’m sure this is partly because this is what’s now expected of me. I’m supposed to move on. I’m supposed to be done. I have and I am; sort of. But I will never be done. For more thoughts on why many who are diagnosed with breast cancer feel they are never done, read this post by friend and fellow blogger, Beth Gainer – Calling the Shots.

Will I feel less apprehensive when I reach four years out, then five, then dare I say it, ten or more?

Probably; at least I hope so.

But this is Cancer Land.

My mother’s cancer recurred at 3.75 years post her diagnosis. Maybe this is why I tiptoe.

My friend and fellow blogger Jody, of Women With Cancer, was diagnosed with metastatic breast cancer merely days ago – fifteen years after her initial diagnosis. Yes, I said fifteen years! Maybe this is why I tiptoe.

Approximately 155,000 Americans are presently living with metastatic breast cancer and some 70,000 more are being “inducted” into this community every year. This is despite so much focus on awareness and all the pink hoopla. Maybe this is why I tiptoe.

There are still roughly 40,000 deaths due to metastatic breast cancer annually in the United States alone and close to half a million world-wide. Maybe this is why I tiptoe.

I do not live in fear.

I will not live in fear.

While it’s certainly true, each minute that passes since that day means there is more distance between then and now; admittedly, it’s also true that I still feel more than a bit wounded. I still live with the reality things can change in an instant.

Really, we all do though, right? Cancer or no cancer, life offers no guarantees to anyone.

I am more than content and very grateful to keep on tiptoeing.

Have you noticed a domino effect since your diagnosis?

Do you ever feel as if you are “tiptoeing through survivorship”?

 

I’d much rather just be tiptoeing through the tulips…

 

30 thoughts on “Tiptoeing Through Survivorship

  1. Nancy,

    I’d rather be tiptoeing through the tulips myself!

    The Cancer World is a scary one, isn’t it? It took me awhile to realize I’d never be done. I don’t know if it was denial or just wanting to — dare I say it — feel positive, but there came a point for me where I realized that the shoe can drop anytime for anyone.

    Like you, I refuse to live my life in fear. But I find myself sometimes tiptoeing through survivorship and sometimes wanting to stampede away.

    I do feel a domino effect from cancer diagnosis and treatment — physically and emotionally. My bones are affected, and I see the scars every day. I feel pain from the surgery. Emotionally, well how can someone not be affected by this “experience”?

    Thank you for including a link to my post. You are so sweet to do that; I appreciate it.

    1. Beth, Yes, the shoe can drop for any of us at any time, that’s for sure. It’s all a balancing act of sorts and an “evolution,” too, as how we feel about aspects of life in Cancer Land certainly changes and evolves, as it did for you. Thanks for your comments. And you’re very welcome.

  2. Nancy, this is so well written and I feel so many of the same emotions as you about “having breast cancer”. As long as we have periodic medical checks of any kind, we suffer the anxiety of recurrence only other BC patients can understand. Is this the time it comes back? Every single time – so we do stay in cancer land for our entire lives. I am often asked what I am? As in what do I consider my cancer status to be – survivor, fighter, in remission, you don’ still have it, right? And I have a hard time with that. As soon as I am NED (waiting for August) I will explain and use that term.
    Domino effect is real for me – 3 weeks of 3 surgeries, 7 weeks of rads, wiped out completely, mental acumen gone, job suffers, Family Medical Leave for 6 weeks, job suffers more, more surgery in February (another lumpectomy – other side), boss giving up on me, back to work trying to make up for lost time to improve relations, not in to it but it must be done. Feel like a failure and a weakling, 1 year ago I was at peak performance. The change happens so slowly, it’s interesting to recognize the dominoes myself as I write this.
    Thanks for the opportunity to vent.
    Jane

    1. Jane, There are a lot of dominoes when you start thinking about them aren’t there? Thanks so much for sharing and for your kind words. Feel free to vent away anytime!

  3. Hi Nancy…

    You commented on my blog long ago, before I dropped it for a while. I am back now and blogging a bit about survivorship myself. My diagnosis date was April 27th — four years for me. My mother was also diagnosed w/BC, 2 years before I was. She is still here. I am so sorry your mother is not.

    This post was just so well put, it resonated deeply with me. I love your style 🙂

    I’m going to add you to my blogroll asap and will be by here often.

    Thank you for all you do.

    1. Kayleigh, It’s great to hear you’re back at blogging. I’ll be sure to stop by soon. I’m glad this post resonated with you; well, I’m not glad you had the diagnosis, but you know what I mean. I’m so glad your mother is still with you. Thanks for adding me to your roll. Come on back any time. Thank you for your comment. I appreciate your kind words.

  4. Three years out of treatment just isn’t that long. You’re doing great, helping many others, and learning more as you go along.

    I call that tremendous.

    Thanks so much,
    Jody

    1. Jody, Thank you so much. You know sometimes it seems like a really long time ago and then again…and as you know all too well, things can and sometimes do change in an instant. My best to you, my friend.

  5. I passed my 4 year mark recently and I never mentioned it. In fact the further I am the more apprehensive I feel…
    I never feel safe our out of the woods…

    Alli….x

    1. Alli, I guess you’ve got one year up on me then. It’s interesting that you feel more apprehensive as time goes by. Maybe your feelings will evolve on that, but then again… thank you for sharing how you really feel, Alli. My best.

  6. I prefer ‘shit hit the fan’… I’m very glad you are so involved with your own process. I could have learned so much more from you if I’d started researching prior to my last dx. After almost 3 years of treatments, and continuing one pill a day, I did feel that it was a done deal, I was good to go, etc. I should have been tiptoeing, knowing, apprehensive. It’s not the way I’d wish anyone to live, but dammit, it hit me smack in the face in 3.25 years. I might have gotten a lot more done that would have meant something in the end, if I had informed myself of my own odds. Thank you for being in our lives Nancy. Much love…

  7. It’s natural that you would be aware of when your mother recurred and the timing compared to your diagnosis. There are so many reasons we tiptoe around so much of this. And then we are hit with the news of Jody. It’s natural that all of this is on your mind. We just have to keep on keeping….Love and Hugs – Susan

  8. I’ll be celebrating my 5 year cancer diagnosis anniversary by getting a complete hysterectomy due to high grade atypia due to tamoxifen. I had 4 more months to go….
    The hysterectomy will be almost exactly 5 years after my lumpectomy.
    I got lymphedema from that surgery, and had to find a gyn onc who wouldn’t remove pelvic nodes unless there is a strong indication.
    An tamoxifen induced second primary.
    I guess I have to thank my vigilant gyn who dragged me in for my third D&C, kicking and screaming that it wasn’t necessary, but I feel so upset that no one on the team stepped back and looked at the fact that I needed 3 D&C’s in almost 5 years on it.
    I thought I saw the end in sight. Now I have a new doctor, a gyn oncologist.

    1. Judy, I’m sorry about all you’ve been dealing with and that you need yet another surgery and yet another oncologist. Sounds like you’ve had a few too many toppling dominoes too. Good luck with your surgery; do keep me posted. Thank you for your comment.

    1. Eileen, Yes, our dates are close together; I wasn’t aware of that… Tiptoeing seems to describe pretty well how I’m feeling right about now. Thanks for “getting it,” Eileen.

  9. Dear Nancy

    You are right about tiptoeing through the unknown. I am just counting the days where I reach my 1 year mark i.e. 25 May. I can’t believe that it has been one year since my life was affected by cancer.

    Some days I wonder whether the cancer will come back even after all I have done. Did I make the right decisions or is there more I could do? I will never know.

    Ivy

    1. Ivy, Your feelings of uncertainty are completely normal, especially as you approach the one year mark – which is not very long to even begin to absorb all this stuff. I’ll be thinking of you. My best and thanks for sharing.

  10. It’s weird; because of other drama, when I found out Feb. 14, 2012 that I wouldn’t be doing chemo for this round, the dominoes that had been falling for over 3 years stopped falling. The past year has been all about re-setting the dominoes and tiptoeing around them, hoping that I don’t reset their fall. Excellent post!

  11. Nancy when I was diagnosed had the surgery finished the Chemo I asked my Onc to give me the facts. Being that I had multiple tumours that were malignant Lets not forget the botched Pathology letting my breast decompose over a weekend. He told me that being the way things are Most with this type has 4 good years a 5th a bonus so in passing 4 until I get past the 5 year mark I will be on my tip toes! Alli….

    1. Alli, Wow, that must have been disturbing to hear. I’m sort of surprised a doctor would say something like that. I don’t blame you for feeling anxious. Tiptoe on through with the rest of us I guess… Thanks for sharing, Alli.

  12. Tip-toeing is a good way to put it, I think. I’ve been contemplating the language in cancer lately–not the dumb things said to cancer patients, and not even the battle language–but the words survivor, remission and cure, and my convoluted relationship with those words. Once I muddle through it in my mind (and figure out exactly what is troubling me), I’ll try to post about it.

  13. Tip-toeing is right!
    After almost a year of treatment, everyone was celebrating that I was cancer-free. Except for my “little hot-flash pill,” that I was to take for 5 years, and lots of check-ups, I was done!
    Yeah, sure! First checkup of 2013, something was wrong with a blood marker, here came all the testing again, then radiation for mets on my spine, then adding a monthly injection to the femara.
    Plus, even if this next PET scan is NED, it will be assumed I am at risk for it popping up again in my bones forever. Treatment of some kind will continue and continue.
    So? What am I? Am I a survivor? That implies to me that treatment is over. It isn’t, although right now it is at a pretty low level. I know that might change at any checkup. I wonder about any new odd pain or symptom.
    I want to be able to put all this cancer stuff behind me. I want to just be a normal mom and grandma.

    1. Elizabeth, Tiptoeing seems to fit. That’s how I feel anyway. Too bad a person can never truly feel as if they’ve stomped out the cancer beast for good. All we can do is live and enjoy life in the moment while remaining vigilant too. Thanks for commenting.

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