Fuck cancer

Too many of my friends are facing cancer…. so I had these made. Get at me if you’d like one.

Made by NoCoast graphics — located right here in the twin cities.

fuck cancer decal

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Five years ago today….

Hello world – five years ago I received the news that there was no evidence of cancer remaining in my body.  WHOA!  Time crawls and flies by simultaneously….

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So busy with LIFE!

Hello world — Nothing new to report, which, in the world of cancer, is usually good news.  I’ve starting racing at the National Sports Center Velodrome, which is amazing.

A.M.A.Z.I.N.G.

And I even won a state championship race (points race)!  Holy smokes!

Tre just started high school, and when I’ve asked him how his school days have been, he has a one word response…. Good. He’s playing soccer on the high school team, and that’s pretty exciting.

And here’s a photo of me riding on the track for your viewing enjoyment.

I hope everyone has a great day.

And – on behalf of my cancer friends and family everywhere…. FUCK CANCER. Because cancer sucks.  So…. FUCK CANCER.

first win on the track 2016

Tempo race with 2 and 1 points awarded for first and second across the line for every lap….  and the first race I won track racing.  YAY!  The bike was fabricated by the fantastic Erik Noren of Peacock Groove (https://www.facebook.com/PeacockGroove/).

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Reclaiming my chest after the double mastectomy

As promised – a photo!  With each addition, I feel this chest becoming more and more MINE again….

Tattoo artist:  Junko Osaki

http://www.tailorbirdtattoo.com/artists/#/guest-artist/

and

http://www.skinpapercloth.com

Photos minutes after completing second session on the Tree artwork.  I’m in love!

torse march 2016 tattoos

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Four years ago, I had a double mastectomy.

 

We don’t get to choose breast size. We don’t get to choose whether they are symmetrical or perky. We don’t get to choose whether breast-feeding will be easy or nearly impossible. We don’t get to choose whether cancer pops up in one or both of them

When faced with the cancer diagnosis – suddenly – I had some choices

Mind blowing

Was I happy about being faced with those choices? No – absolutely not. A cancer diagnosis is terrifying. But now, four years later, I’m darn happy with my chest – much happier than I ever was about my breasts

I had always wished for a flatter chest. One of my first vivid memories of feeling breastful was being looked up and down by my father and told I was going to be a regular Dolly Parton… with a gleam in his eyes, a huge grin, and a laugh. I think I was like eleven – maybe twelve

Ew. OK? Just EW. Big breasts are just not something that a parent should say – WOWZERS and imply that they’re something about which I should be proud. As if they or I chose the size of my breasts. … As if big breasts somehow made me worthwhile….

I remember thinking that these breasts were inconvenient and annoying. I remember thinking – what? They are going to get BIGGER???? And yes – yes, they did get bigger. I had many negative experiences with unwelcome comments (Jeez – I’m just trying to give you a compliment, he’d say) and stares and touches and pinches and grabs and more.

So often, as a teenager, I felt somehow controlled by my breasts. People stared at them. People touched them without my consent. My straight boyfriends (the best ones were the gay ones, truth be told) wanted to get their hands on them. My birth mother would tell me when I was unacceptably nipply. She would admonish me if there weren’t enough material between those nipples and the world. She only permitted me underwire bras, telling me that they were the only acceptable way to control my breasts. Because breasts needed to be controlled. Controlling my breasts extended to controlling me.

Today I have no breasts. In 2011, I received the news that I had triple negative breast cancer. Right at that first appointment with the breast surgeon, I felt confident in saying that I wanted a double mastectomy. His support of that decision never wavered. He asked me whether I would like to explore reconstructive plastic surgery etc… When I said no, he accepted that answer and simply moved forward with treatment planning.

Lucky for me, I had chemo before I had surgery. This was a major positive because I had time to think and rethink the surgical plan. Never once did I waver from the decision for a double mastectomy without reconstruction. My surgeon checked in with me a handful of times, with respect not challenge. I’m grateful for his approach, as he never demanded that I reconsider or seek permission from my spouse or make an appointment with a therapist (those things happen to breast cancer patients all the time).

In fact, most forgo breast reconstruction (Morrow et al., 2014). MOST. More than 50%. We have astonishingly poor access to data that could really help breast cancer patients make decisions around surgical treatment plans and breast reconstruction.

What data would I like to see? What data would help patients make informed decisions?

The data collected should be more informative. For example, the data should reflect the gender identity of the breast cancer patient – not just the sex assigned at birth. These are hard surveys to design, I am sure.

I think a database that could provide statistics regarding what surgical treatment plan people selected would be tremendously useful. While discussing options with a surgeon or sitting at home agonizing over single or double mastectomy…  Kind of like that cancer survival calculator. You enter things like your racial identity, gender identity, sex assigned at birth, fitness, weight, height, cancer details, and then you get a report describing how many people were similar to you, which options they selected, and an assessment of the outcome. That would be amazing.

 

Yes – longitudinal data – that would be AMAZING. Ask people to update their entries 2 and 5 years later, with ratings of how happy they are with their surgical outcome and what kinds of complications they’ve encountered. I know several athletes desperately unhappy with the consequences of implants or reconstructive surgeries involving moving tissues from one area to another. What fraction of athletes are happy or unhappy with reconstruction? What fraction of people feel their range of motion is compromised as a function of the surgical approach…. I don’t know the answers to those questions, but having information like that could help future patients make more informed decisions. Information like that could also lead to improved reconstruction techniques.

 

Every person is different, but I feel like the more I learn about the consequences of breast reconstruction, the more grateful I am that I don’t have reconstructed breasts. As I hear about the multiple surgeries often required to get a symmetrical result or to even handle complications that arise or to handle implant degradation over time, I am grateful that a flat result was the one I wanted most.

 

This new landscape of my chest is different. There’s a numb patch on the right side, near the sentinel node biopsy location. My chest doesn’t fill out shirts the way I sometimes wish it would. I mean, there are some shirts – t-shirts even – that simply look funny on me now. It feels a little awkward at times. Sometimes I feel people trying to figure me out. Sometimes people ask me rude questions about my body. They will ask – did you have – voice drops to a whisper – BREAST CANCER? Sometimes people express jealousy for my flatness – especially athletes – or pity for my flatness. Many claim they would go flat if faced with a breast cancer diagnosis or they would never go flat if faced with a cancer diagnosis.

So, how do I reclaim that landscape? Tattoos. I’ve spent quite a lot of time at the tattoo shop, working closely with an artist whose artwork I adore and who I trust to reclaim this chest of mine. With each new addition, I feel my chest becoming more and more me again. My full torso tree is currently in progress, and a photo shall be posted after my next appointment!

PS – four years after treatment, and I am still NED – that’s no evidence for disease – a lovely lovely acronym!

Reference: Access to Breast Reconstruction After Mastectomy and Patient Perspectives on Reconstruction Decision Making; Monica Morrow, MD; Yun Li, PhD; Amy K. Alderman, MD; Reshma Jagsi, MD, DPhil; Ann S. Hamilton, PhD; John J. Graff, PhD; Sarah T. Hawley, PhD; Steven J. Katz, MD, MPH; JAMA Surg. 2014;149(10):1015-1021. doi:10.1001/jamasurg.2014.548.

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Four Years Ago: You Have Cancer

Four years ago today – I was sitting in my office when I got a phone call from the breast center…. You have cancer, she said. You have invasive ductile carcinoma, she said.

It feels like yesterday and it feels like a decade ago.

Honestly – I probably would have spaced that it’s my diagnosis-day-i-versary except that I put in an annual reminder into my google calendar. Now – I’m thinking about deleting that.

I’m super grateful to the wonderful and beautiful and super savy Cheryl…… and the energetic and joyful Tre…. Thank you for sharing your lives with me! They definitely made cancer far far less sucktacular. And let me be clear – it was sucktacular!

I have several friends facing cancer – either themselves or supporting a loved one.

So, I’m going to leave you all with some advice. If someone tells you they have cancer… or their mom has cancer…. or their child has cancer…. HOLD your advice. HOLD your stories about so and so who died horribly….

Say something like this.
I’m so sorry you have cancer.
Oh my – that’s sucks!
Or – my personal favorite, although not everyone appreciates the f-bomb….
FUCK CANCER!

If you have energy and help to give, then offer it.

And – a wee photo for your viewing pleasure.
Flat and fabulous…..
Tattoos by Tatus by Kore (Tre’s world) and Ayako Junko Osaki at Twin Cities Tattoo (Eagle and Jonathan Livingston Seagull)

Photograph of Lee Penn's flat and fabulous chest, with a colorful tattoo by Tatus by Kore and an eagle and Jonathan Livingston Seagull by Ayako Junko Osaki.

Photograph of Lee Penn’s flat and fabulous chest, with a colorful tattoo by Tatus by Kore and an eagle and Jonathan Livingston Seagull by Ayako Junko Osaki.

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THREE YEARS since last step of treatment

Three years ago, I became flat and fabulous! Seriously! Flat and fabulous is a group of people who’ve had a unilateral or bilateral mastectomy without reconstruction. That’s me! I had a bilateral mastectomy three years ago today.

Three and a half years ago, I received the news that I had breast cancer. Over the next few weeks, I went through terror – terror that I would not see my child make it to middle school, among other things. Right now – as I type this – my child is having his annual birthday sleep over – celebrating his thirteenth birthday on Friday the thirteenth!

So – here I am!

My breast cancer was triple negative, which meant that it was not estrogen receptor positive, progesterone receptor positive, nor HER2 positive. This also meant it was an aggressive form of breast cancer with a high risk of recurrence. I had 16 rounds of chemotherapy, which included an experimental drug that has now been demonstrated to show effectiveness against triple negative breast cancer. I then had the bilateral mastectomy, and the pathology report concluded that I had a complete pathological response. That result meant that my risk of recurrence had dropped DRASTICALLY – to somewhere in the neighborhood of 5%. With triple negative breast cancer, most recurrences occur within the first three years after diagnosis. So, I feel I’ve hit a bit of a milestone (knock on wood!).

On reconstruction – the choice to opt for a mastectomy versus lumpectomy with radiation was an easy one for me. I did not want radiation if I could avoid it. I wanted to preserve my lung and heart function and did not want to deal with skin problems… I have very sensitive skin, as it turns out. Since I had clean margins after the bilateral mastectomy, radiation was not called for.

The choice to opt for a bilateral mastectomy versus a unilateral mastectomy was similarly easy for me. This was mainly because I did not want reconstruction. I did not like the idea of multiple surgeries nor the idea of needing “repairs” or “replacements” every decade or so. I also did not like the idea of foreign objects under the muscles in my chest. The whole thing seemed so very invasive! I also could not tolerate the idea of having one boob. I wanted symmetry and simplicity.

Being flat is definitely simple. I never wear bras – ever. I definitely have symmetry. It turns out, there are many things that are easier boob-free. I was fairly “well endowed” as they say…. and it’s easier to roll over in bed, jump up and down, run across campus, roll over potholes, jump over obstacles (whether on the bike or not), reach across a table for something, squeeze through small spaces, pick up large heavy objects, sleep on my stomach…. and I have the flexibility of opting for foobs (prosthetic boobs) if I want to. Turns out – I don’t want to.

As for clothes? Maybe no one really notices, maybe people are simply over it, or maybe people around me are way too polite to say anything… Whatever… I’m darn comfortable in my skin – more comfortable than I was with bras and boobs. I just wear what I wear… and that’s that. A few items no longer “fit” – and that’s fine with me. There are other things that actually seem to fit better. If I need a professional look – no problem. If I want a casual look – no problem…

IMG_0525 copy

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