Five years ain’t just a Bowie song

Let’s get something out of the way right now: five years of surviving ER+ breast cancer don’t mean jack.

Yeah, surviving means something.

Yes, every passing year is nice. Krikey, after a cancer diagnosis, every passing day is nice. Five years without flat-out passing is even more spectacular.

But five years doesn’t mean I’m cured. It doesn’t really mean much at all when you are ER+. My risk went down following chemo, following surgery, following tamoxifen, following about a two-or-maybe-three year wait. Then, my recurrence risk stabilized and will stay at the same rate forever.

Forever.

(I was going to cite some statistics for you, but revisiting some sites right now to get that information, I thought I was going to puke. A few years ago, I was numb to that feeling. I could still look up stats and share them. Not right now. A few years ago, I was still cancer drunk. Still blogging very regularly. Still immersed in the info. Today, I have a few years of of cancer sobriety under my belt and I can feel again. I would like to keep it that way. For now. Someday, I will probably be able to regain a healthy relationship with medical statistics, but not today.)

Now, while I know the risk remains the same for me forever, I don’t think that really puts me in a different category from all other types of breast cancer survivorship. While it does from a medical standpoint (in my very own category, as we all are unique patients), I think it would be true to say if you are surviving a breast cancer diagnosis – probably any cancer diagnosis – for the rest of your life, every twinge and pain and icky feeling gets a heightened level of concern.

Pain in my back? I get sent for a bone scan.

Generally bad feeling and other vague symptoms? Let’s check my liver enzymes.

Lumps in my armpit? Let’s run, not walk, to the nearest sonogram machine.

On an average day, I probably think of cancer about five times, down from an all-time high of a 100 percent focus on breast cancer from March 17, 2006, until about October 2006. Not a single day goes by that I don’t think of it. It’s really hard to forget. I have this giant mirror in my bathroom that shows my reflection as I get into the shower. I have a scar that runs from my left armpit, across my breast, to the center of my chest, skips about two inches, picks up again, goes across the other breast and runs into my right armpit. And I can feel nothing in the area formerly known as breasts. It’s surprising how annoying a persistent lack of feeling can be in any part of your body, especially since it’s not a body part I need to walk or type or move my head or anything else important like that. It’s certainly not essential that I feel the area formerly known as breasts, but it’s annoying that I can’t.

So, I am unlikely to stop having daily thoughts about breast cancer until the day I stop thinking. It’s a part of me as much as the color of my eyes.

At some point in the last five years, the risk become meaningless. I used to know, off the top of my head, all of my statistics, all of my health numbers. I could have told you my exact risk. I even faked a medical degree to get access to a personalized statistical tool. (Not nearly as dangerous as that sounds. It took two seconds.) But at some point in the last five years, the exact risk stopped mattering. The risk, you see, is no longer “the thing.” The risk is just the risk.

The thing is that I have the risk at all. That’s the thing. That I went from being someone who hardly thought of cancer to someone who has to think of it – a lot. I went from assuming if I ever got cancer it would be when I was old to being someone whose cancer risk put her left expectancy worse than people I thought were old. Consider that. Let it sink it. Yeah, that is the thing.

In this ramp up to my absolutely, positively meaningless five year breast cancer diagnosis anniversary, I have been thinking about cancer a lot.

I have been thinking about how stupid it is to think about it.

I have been thinking about the rollercoaster of it all and re-experiencing the rollercoaster of it all. It has been all I could do to keep myself from a full-scale meltdown, which I ultimately might not succeed in resisting. (As of this moment, I’m still a few hours away from D-Day: Diagnosis Day. Who knows? By the time you read this, I might be drowning my sorrows in some green Peeps or dancing around accusing people of being after my Lucky Charms. That’s what I imagine a full scale St. Patrick’s Day meltdown looks like for me.)

I have been thinking about how insane the last five years of my life have been, how most of it is a story that will never get told and how some of it is a story I had better start writing before I forget. I have been incessantly dissecting how much of it was ever really related to breast cancer and how much was not.

I have been thinking about all of my friends who have died. I have been painfully missing them. I’ve been really sorry that you didn’t get to meet them. I’ve been trying to remember the names of some women I didn’t know well. I’ve been really sad for the ones I never knew. I’ve been feeling so guilty. So, so, so guilty that I am here and they are not. The randomness of this disease is horrifying.

I’ve been thinking how glad I am I got to know any of those women. How glad I am for all of the women I know now and how they get in me in ways I can’t explain. I wish you all could have that experience without having cancer.

I have been constantly taking stock of the last five years and wondering why some of it went the way it did. Parts of it were fleeting and I am sorry they were. I want to reclaim some of that time. For the life of me, I can not figure out why I stopped roller skating. That needs remedied.

In all of the reliving, I’ve been feeling emotions I haven’t felt in years and wondering how I can make them go away faster. It’s not that I don’t want to deal with them, but I feel like I have. I’m just re-experiencing, so those emotions feel strange – they are out of time, out of context. They need to be gone. Their time is done.

I have been thinking this and so much more. It’s exhausting, all of this thinking. It makes me cry. Then, I try not to cry and trying not to cry takes a lot of energy. I try to think about happy things and those make me cry. I try to think about nothing and then I just want to sleep. I have never been very good at meditating. It just seems like a convenient time to take a nap. Exhausting.

I believe – goodness, I hope – this is going to melt away in a few days. If there is one bit of wisdom I have gathered in the last few years it’s that everything passes. Every damn thing. I know this is going to be earth-shattering information to some of you – some of you won’t even be in a place to hear it – but this is a truth that took me about 36 years and stupid cancer and rotten divorce to realize: worry is a choice. Anxiety, fear, most any negative feelings – they are choices. I know, right? It’s stupid and it’s true. These are not legacies we have to carry with us. We get to choose whether we have those feelings or not. Most of the time, I just choose not to have them any more. But there are times – like this – when I can’t make that magic decision work. So, the best thing I’ve figured out to take a deep breath and wait. It will pass.

So far this absolutely passive plan of mine has been working.

I survived cancer and all I got was this lousy t-shirt

Here is a brief list of some of the things that have happened to me since March 17, 2006, in no particular order except how I thought of them:

  1. I was diagnosed with cancer.
  2. I had four months of chemo, lost all of my hair, almost couldn’t walk by the end.
  3. I had seven surgeries.
  4. I had an estimated 60 doctor’s appointments, but that figure might be low. Definitely more like 150 with visits to the cancer therapist.
  5. I realized I have the best friends in the world. 
  6. I watched my daughter start kindergarten, first grade, second grade, third grade and fourth grade. (Just started crying. See how that is working?)
  7. My father-in-law died from cancer.
  8. I won a trip to Rome by a random drawing of co-workers and I can still hear them screaming through the phone.
  9. I went to Rome and it was awesome. I walked up the Spanish Steps twice and almost didn’t make it the second time and it was awesome. I got lost walking around Rome and it was awesome. I got front row seats for the canonization of Saint Mother Theodore Guerin and it was awesome. I got flat-ass drunk with nuns and it was awesome.
  10. I walked around Rome nearly bald and I thought I looked great because I was so excited to have a thick layer of peach fuzz, but pictures don’t lie.
  11. I got separated and I thought my whole world had fallen apart. I got divorced, too.
  12. My hair grew back and it was super soft and curly. I loved it!
  13. I realized that I probably won’t have more children.
  14. I traveled to Washington, D.C., Jacksonville, Fla, Dallas, Nashville, Atlanta, Philadelphia (twice), N.J. (via NY and Philly), Orlando, Fla. (twice), Palm Springs, L.A., Las Vegas, Chicago, New York, Key West, Kansas City and various Midwest cities.
  15. I ate a cheesesteak and a pretzel in Philly.
  16. I had water ice.
  17. I saw Celine Dion in concert and lost my little mind.
  18. I saw AC/DC in concert and lost my voice.
  19. I sang karaoke for the first time by myself and didn’t pass out.
  20. I started dancing (for fun not profit) again and hanging out in bars where dancing was encouraged.
  21. I went to a drag show.
  22. I went to another drag show.
  23. I met new friends.
  24. I reconnected with old friends.
  25. I met a man who was much too young for me.
  26. I told him that no matter how much I liked him, he was never going to meet my daughter.
  27. I introduced him to my daughter.
  28. I told him that I loved him first and I didn’t give a poop if he said it back or not. I had nothing to lose.
  29. He said it back.
  30. I embraced having nothing to lose. I made a lifestyle out of nothing to lose.
  31. My house went into foreclosure. I didn’t panic. I cried, but I didn’t panic. I had several plans mapped out, including living out of my car.
  32. I waited a lot and finally got a modification on my mortgage.
  33. I filed (am filing) bankruptcy, which is something that ranks right up there with divorce on the list of things I never wanted to do. I’m going to survive it, too.
  34. I was on the Today Show. I was in the crowd who stood outside, but I have video evidence that I was there.
  35. I learned how to text message during a mini-crisis where I couldn’t find my BFF in a bar and phone calls were not helping.
  36. On the day I learned my ex-husband was moving in with his girlfriend, I drank an entire bottle of Merlot, drunk-texted many people and puked.
  37. I no longer drink Merlot. I still text.
  38. I met a porn star.
  39. I just thought of the title of my book, “From canonization of a saint to hanging out with a porn star: how I survived cancer.” Yes? No? I think yes.
  40. I went to Las Vegas and totally forgot to gamble.
  41. I went to DisneyWorld!! It would be more accurate to say my sweetie treated my daughter and me to a vacation at Disney. It was awesome. 
  42. I almost got heat stroke at Epcot. It was still awesome.
  43. I drove from Indianapolis to Key West with my boyfriend and we picked up a man named Huff on the way. It took almost exactly 24 hours.
  44. Huff talks a lot – about really fascinating things – and talks really fast. In the middle of one of his really interesting stories where I was hanging on every word (serious, no sarcasm – he has great stories), he said, “And then this happened and this happened and that and IS THAT A FUCKING ZEBRA?!?!?” Sure enough, there was a fucking zebra alongside the road – a real live one, and another, and another. Pastures for miles and there were cows, horses and, suddenly, zebras. Totally random zebras. I think I laughed for an hour straight after the zebra pronouncement and, months later, Andy and I are always asking each other if we just saw a fucking zebra.
  45. I got to see sweet chickens and roosters and the Hemingway House and the Hemingway cats with extra toes and two sides of an island and the Truman White House and cute little lizards and an amazing sunrise and a sunset wedding and a wild thunderstorm and Key West is my new favorite place in the whole wide world.
  46. I went to a Miranda Cosgrove concert for my daughter – and I liked it.
  47. I went to the Country Music Hall of Fame and drove my sister crazy using my down home country music voice to declare we were in “Nashville, Tennessee, home of the Country Music Hall of Fame!” repeatedly and without regard to those passing by.
  48. My sister then retaliated by telling me it was easy to climb this 142-story jungle gym to see the lookout over Nashville. And I did it.
  49. I got certified to become a sex ed teacher for adults. Yep. I sure did.
  50. So many more things that I can’t remember at 1 a.m., aren’t fit for print or I choose to keep for myself. 🙂

Because I know Tim McGraw would appreciate my down home country music voice

This came on my radio today. It has been ages since I heard it and I don’t think I ever realized what it was about until today.

So, from me to you, just a little video with a hot man in a black leather cowboy hat to remind you that you don’t need to have cancer to live like it.

Author: rosie

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7 Comments

  1. Love you Rosie! You are wise woman incarnate! I get it, and I am thankful that I can call you friend.

    Valerie

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  2. Rosie! Love you and am happy to say Woo-Hoo to five years since cancer diagnosis, and all the other things you have done since then (well, maybe not the heat stroke and some of the the other things on your 50 things list!). You are truly amazing in so many ways and I feel fortunate to know you and hope we can see each other again, sometime soon! xo

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  3. Please write it all. More. I am Oliver in the dining room, I want more!!

    It’s not enough yet, Rosie. A blog just is not enough…’Five years ain’t just a Bowie song’ and “Five years, and introduction and a list on a blog just ain’t enough’ either.

    But it sure is a wonderfully damn good piece of writing:-) I so love your willingness and abilities to share with smiles through the forever pain and tears….

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  4. You are incredible Rosie. Congrats on five years and I raise my glass to you and wish you many many more.

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  5. Don’t forget about your constant text messaging during the Opry! That drove me crazier than anything!
    I love the song you posted. It makes me cry everytime I hear it. But I always end up with a sense of peace when I truely think about the words. It is a perfect song.

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  6. Rosie,
    I don’t know you…but I know your story very well. I too am a survivor. I too LOVE life now.
    I too lost my husband and my home during cancer. It’s all good.
    I am the Exec Dir of a 501c3 non-profit org. that helps stage IV cancer victims pay for their mortgage/rent and other $$$ necessities for as long as they need it.
    I would love to talk with you. I have never been on this site before. I’m not sure how to get in touch with you…safely. Any suggestions? I am asking both Rosie and also the moderator.

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