Stability, not the mental kind

A couple weeks ago, I was down in Texas for Beloved Eldest Niece’s wedding. OK, Texas in August is HOT. Seriously.

So, needing some exercise to break that sluggish, post-travel-day slump, I got up early to run along the riverwalk (Waco). I saw lots of other like-minded folks out walking, cycling, running – because early is the only sane time to do that when the day will top out in triple digits. (I did see a couple of people running on lunch breaks. They were loaded with water bottles and hydration packs, enough to run an ultramarathon. But they were probably only running a couple miles – it was HOT! What is that saying…”mad dogs and Englishmen…”?)

I also worked in time to workout with my favorite clients – my parents. Lots of you know my parents from this blog, especially my mom. (you can read about Mom’s quest to be the pushup queen here )

They’re both in very good shape because they are great about exercising regularly. But they’ve both had some health issues in the last year or two, so I wanted to check in on their routines – make some adjustments and add some new things into the mix to keep their exercise routines from becoming too “routine.” With recent hip and eye surgeries, I wanted to add stability work.

Some changes were just modifying exercises they’ve been doing. For instance, instead of lunges forward, I had them do lunges on the diagonal, stepping out at a 45 degree angle instead of straight forward. This works the stabilizer muscles – abductors and adductors – a little more. Also, they don’t do deep lunges any more. They step and dip down only as far as is comfortable and stable for them.

I also took the post-hip surgery exercises for strengthening abductors and turned it into an upright, moving exercise. Originally, it was extending the leg out to the side, which can be done lying flat on the back or seated. Mom has modified it to a lift, lying on her side. I just took that exercise and changed it into a moving exercise for both of them because I want everything to relate to movement and making sure they are strong and stable as they move through their day.

So I had them stand facing a wall (for stability if they get off balance), then walk sideways: step, together, step, together. Next, I had them (still facing the wall, even touching it lightly for stability) walk sideways doing “grapevines” – cross over step, step, cross behind. These are both great exercises to help with balance and agility. They’re the same exercises I do for running, slowed way down, but still working the same muscles.

As my parents get older, I want to make sure they retain good stability and mobility. It’s so important for their health, their independence,  and for their peace of mind. But this focus on stability is important for all of us, at any age, especially anyone who has been injured or been weakened by illness or surgery. These are some of the same exercises I’ve done after my long surgeries and recoveries to get myself back on solid ground.

Julie

Posted in balance, modification, mom, older adults, stability | Leave a comment

Relief?

It’s amazing how 80 degrees can feel almost chilly. Honestly, I don’t know how southerners do it.

We’ve finally had a bit of a break in the “heat dome.” But it’s still wicked humid. I don’t do well in heat, and I really don’t do well in humidity! I am the sweatiest person on the planet – this is a fact, just ask my brother who, when crewing for me on races, has been heard saying, “Eeew, you squish, every step you squish, gross!!” as I squish out a puddle of sweat with each step.

I’m having a particularly hard time because I haven’t really had a chance to adjust to it. Our bodies do acclimate to temperature changes, but it takes time. We had a strangely cool spring, and then I spent a month upstate where it’s a lot cooler, even on the hottest days. So I’m still getting used to it. Normally by this point in the summer, I’d be used to doing long runs and racing in the heat.

And so, I continue to take it easy. Each day, I plan on building up mileage or speed, but change my plans when I step out into the sauna. That’s the only safe thing anyone can do. Heat and humid conditions can be dangerous, especially if you’re de-conditioned, have any number of medical conditions, or recovering from illness or injury. But that doesn’t mean don’t exercise. Just be reasonable.

Last weekend, I was up early to go meet friends for breakfast. I saw 5 different people out walking (I almost never see anyone out walking where I live) at 8am – before the heat. Go slower or not as long – your body has to work harder in the heat, so don’t push it as much. Stay hydrated. Stay in the shade – the other advantage of 8am is the sun is not directly overhead. And take a break if you need. On the hottest days, even if I’m only running a couple of miles, if I’m getting overheated, I slow up or walk. Or stop to try to get a picture of a Great Blue Heron at the Girl Scout camp.

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The point is, you don’t have to let the heat stop you. But you can make sensible choices in the heat.

Julie

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Alternatives

I did not go for a run yesterday. Instead, I decided to beat the heat by spending the hot afternoon hours at the Met Museum. Interestingly, when I looked at my little activity app on my phone, I discovered I had walked about 3 miles. (That’s partly because I hate to pay for parking, so I found street parking several blocks away. And because, well, the Met is a BIG museum.)

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Much of the country is under a massive heat dome, as they’re calling it. What that means is it’s hot. Really hot. And humid.

I always prefer to exercise outdoors if I can, and I exercise in pretty much any weather: frigid temps, snow, rain, wind. But I have more trouble with heat and humidity. So I’m a little more cautious in weather like this.

But everyone should be. It doesn’t mean don’t exercise. It just means be cautious. Consider changing activities to something indoors: get on a treadmill or stationary bike in an air-conditioned gym or house, swim, walk somewhere cool. If you do exercise outdoors, make the necessary adjustments. Carry plenty of water with you, stay in the shade as much as possible, go out in the early morning before it’s too hot. Slow down – your body has to work much harder in the heat, so slow down. Or go to a museum.

And remember, for health benefits, it’s the total amount of activity that counts, not just exercise done in one shot.

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A lot of my Met visit was spent in the excellent exhibit on the art the Seljuqs, 11th to 13th century Iran. It closes this weekend, but if you’re in NY, go see it.

JulieIMG_2261

Posted in exercise during heatwave | Leave a comment

So, Did You Win?

“Did you win?” That’s a common question runners and cyclists get from non-runners and non-cyclists when we say we have a race. Of course, the vast majority of us who are racing are not, or will never be, the winners. But there are so many reasons for racing.

This morning I ran the Saratoga Firecracker 4 – four miles to celebrate the 4th of July. I’ve run this race most years when I’m up here playing with Opera Saratoga. It’s a fun, community event which helps support some good local programs (like local track teams and an outdoor sports program for disabled folks).

But I haven’t been racing. It’s been almost a year since my last race. In fact, for a variety of reasons, I haven’t been running all that much this past year. All that didn’t matter, I decided. I didn’t care about my time, didn’t care about my lack of consistent training. Like I said, there are a lot of reasons for racing. So, a couple days ago, I signed up. (I REALLY didn’t want to get up this morning, did not want to race, but I had already paid my money, so I went – that was part of the reason I signed up before, knowing I might change my mind if I waited to register the day of.)

As I was jogging to the start, I was wondering why I was doing this. But then I got close enough that I started seeing all the other runners walking and running in, warming up, pinning on numbers, adjusting clothes. I saw the families who were coming out to cheer on husbands/wives/kids/grandparents. I heard the music blaring. And I remembered why.IMG_2194

Everyone was out for their own reasons. There were some really fast kids (I think the local schools must have some really good track coaches – I’m always impressed). There were teams. There were moms and dads, some running with kids who were running their first race, some pushing strollers. I ran for a while with a new mother, pushing her baby girl. It was her first race since giving birth (and also first race since breaking her ankle while pregnant). She didn’t care about her time, she was just happy to be out. Another mom was pushing a newborn with an impressive scream. Lots of parents or brothers and sisters were pushing disabled sons/daughters/brothers/sisters. There were people dressed in all the latest hi-tech gear. Others in old shoes and cotton T-shirt. One guy was rocking an old pair of Converse canvas basketball shoes – you know, the high-top ones. Some people ran for their best times. Others walked. I just wanted to feel that race feeling again. In some ways it’s been a tough year, so I just wanted to run, and to know that it was a manageable distance, and that I had to finish, and that I could.

So I ran. It was fun. I ran about 2 1/2 minutes slower than last year. But I didn’t care. Everyone was happy. Strangers encouraged each other. And that was why I raced. These are my people, my tribe, everyone just happy to be out. I’m sure someone won, probably impressively fast. But that’s not why we ran.

IMG_2195  Happy 4th of July!

Julie

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Happy Father’s Day!

In advance of Father’s Day here in the U.S., I’d like to share a few pictures from my recent vacation with my parents. We took two weeks, went to Madrid (where they first lived as a young newly-married couple), and then a river cruise in Bordeaux. Fabulous trip, so thrilled that I took the time to travel with them!!DSC_0073DSC_0441

 

 

 

 

 

 

But they’ve both had some health issues over the past year which affected their mobility. In fact, because of an eye surgery, we weren’t sure until two days before the trip whether we’d be able to go. So, besides wanting to spend time with them, I wanted to be there to make sure they were OK and help out when I could.

This was an active vacation: covering a lot of ground in Madrid, and daily shore trips on the cruise which involved lots of walking, usually on old cobblestone streets and through vineyards. I brought along a pair of lightweight hiking poles for my dad to use. And we walked. We walked slowly on very uneven ground, walked quicker on easy ground. We walked up and down steep medieval streets. We took rests after climbing stairs or hills if necessary. And I talked with them both about exercises to improve stability – working on lateral movements and balance (want to keep them stable).

There’s often so much emphasis in the media on super intense workouts. Way too often, people think the only exercise that matters is something that hurts, and if they can’t do that, then it doesn’t count. But it all depends on your situation. What’s adequate depends on your goals, your condition, your health. It’s always completely individual.

We all got a lot of exercise on the trip, but it was moderate. We walked. In some of the ports, I ran – nothing major, just a nice run along the river. And in doing so, despite great (and ample) food and drink, we all came home exactly the same weight as when we left (not that weight is the most important measure of fitness!). The key is, doing activity that is appropriate, and doing it consistently. That’s what’s necessary for longterm health.

So Happy Father’s Day! If you can, go for a walk with your dad. Anywhere, not just on a European vacation. It’s totally worth it – for both of you.

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And in the midst of a fabulous trip, probably my favorite moment was watching my dad ask my mom to dance – he’s still got some moves!

Julie

 

Posted in exercise while traveling, Father's Day, healthy lifestyle, thankful, Travel, walking | 1 Comment

Friends

Kate is hair and clothes flowing, delicate voice, searching through bags filled with tissues, snacks, books, water, pens. She is ethereal, not quite of this world. She is reading poetry, surprising me with her voice. She is in my line of vision as I look up from my music, her face glowing under stage lights, as the final Amen of Handel’s Messiah rises.

Next to her, I am earth-bound and solid. I am laughing as we talk about Beowulf and the art (and science) of linguistics. I am spellbound by her voice reading poetry. I am thrilled beyond measure when she introduces me to a group of poets, “not a poet, but a beautifully poetic writer of prose.” I am heartbroken and in disbelief that she could no longer exist in this world.

This was what I posted on FB last week upon hearing of Kate’s death from breast cancer. And to that, I add other names from the last days and weeks.

Madonna, the beautiful Madonna. She was quiet grace, always gentle, always moving forward as we climbed Kilimanjaro. She was sharing a beer with her husband, tired but satisfied, smiling in my pictures. That is how I think of her, smiling. Next to her, I am coarse. I wish I had known her better, or at least longer. Madonna died of breast cancer three weeks ago.

Jody is light and strength. She is precise, she is articulate. She is advocate, she is leader. Jody is one of the founders of #BCSM – an online breast cancer community – tirelessly working to create something of value, and she has. She has just entered hospice care.

And so, I will launch into one of my periodic rants (rages). Here’s the thing about breast cancer, it can happen to anyone, it can kill anyone, and there is no cure, there is no “getting over” it.

Early detection is great, but it is not a cure. Estimates are that around 30% of people with breast cancer, no matter what stage, will develop metastatic breast cancer (MBC) – cancer that has spread to other parts of the body, where it kills.

Breast cancer can, and does return, no matter the stage at diagnosis. It can return 3, 4, 5, 12, 27 years later.

Positive thinking and a “will to live” are not a cure. It may help people feel better and enjoy their lives more, but it will not cure cancer. I guarantee that every person who has died of cancer really, really wanted to live.

Funny, or touching, or clever social media MEMEs do not cure cancer. Pink ribbons sure as hell don’t cure cancer. Nor do any of the feel good cancer campaigns.

What might? Research. Plain old, boring, slow-as-molasses research. That’s what might help. Targeted treatments for some types of cancer, which can seem practically miraculous to those of us who have been around a while, were developed out of years of painstaking research. But a useful treatment for one type of cancer does not necessarily mean it will help another. There is no one thing as cancer, so there will never be one “cure.” Each and every advance comes out of research. So if you want to do something useful, donate $$ to research – RESEARCH.

Don’t mindlessly give money to any organization without checking how they spend it – and this is true for any cancer! Is the money going toward research? Or is all the money going to make little ribbons?

“Awareness” campaigns don’t do anything to find effective treatments. And at least for breast cancer, are probably fairly unnecessary at this point – unless they’re targeted for underserved populations. A recent study pointed out continuing racial biases in pain management, and earlier studies show disparities in cancer diagnosis and treatment. There is also still little awareness of male breast cancer. Programs targeted populations which can still use some awareness are one thing, but really, middle-class white suburban women probably don’t need any more “awareness.” This is pointed mostly to breast cancer, but this does apply to other cancers. And that gets back to my previous point: if you want to do something useful in your grief, donate money to research.

Or go for a walk. Really. The American Cancer Society (in their 2012 Cancer Facts & Figures) estimates that a third of all cancer diagnoses in the U.S. are directly attributable to lack of moderate exercise and poor nutrition habits. And if you know someone who has or had cancer, take them for a walk. Based on various studies, breast cancer patients who exercised moderately had improved survival rates of 35-65%, depending on the study, the exact populations, and how is was measured. But benefits are not just for breast cancer, other cancers (colon, lung, prostate) have shown improvements also. But the results for these cancers are so strong that the AACR (American Association of Cancer Research) recommended that all cancer doctors should talk to all their patients about exercise, no matter what type of cancer.

Of course, exercise is no guarantee. I’m a perfect example – very physically active, and developed breast cancer in my 30s. And all of my friends listed above: Kate did yoga, Madonna walked/ran/climbed Kili(!), and Jody loved to walk and cycle. But statistically, we’re the outliers. Statistically, you improve your health, and your friend’s, if you go for a walk regularly (or cycle, or dance, or swim, or skip).

So go for a walk. And support research. Because I’m so damn tired of writing memories.

And enjoy your friends while you can, because that’s so much more satisfying than writing remembrances.

Julie

Posted in #BCSM, Above and Beyond Cancer, benefits of exercise, cancer prevention, cancer research, exercise and breast cancer, exercise and cancer | Leave a comment

Enjoy….true confessions

Today’s Life-Cise Daily Tip is “Enjoy yourself!” It’s a phrase I’ve been thinking about a lot lately. And it’s an idea I’ve been experimenting with in my own workouts.

You know me – I’m a pretty driven, intense exerciser most of the time. Don’t get me wrong, I enjoy it, that’s partly why I do it.

But over the last year, I’ve fallen more and more into an exercise funk. Between family obligations, work, weather, little injuries, I fell off my training again and again. I gave up on various big races I had planned. And then started giving up on small races. It made sense at the time. Training for an ultramarathon (or any big race) takes a big committment – of time, of energy, of focus. And I just didn’t have that focus.

It was a good move. I think my body needed a break after several years of pretty constant training. And my mind definitely did.

But once out of the habit, it is so hard to get back into it. A lot of people have expressed surprise that I know anything about that…Of course I do. Everyone does. Or anyone who’s honest does – athletes, trainers, the most Type A person you’ve ever met.

As I’ve struggled to get back into the habit, I get easily derailed. Two weeks of regular exercise, and then I have a busy week or I fly out to see my parents or I’m just tired, and then it’s just easier to not go out for a run – “I’ll run tomorrow.”

But I’m trying something new. I’m putting all the training plans, the gadgets – the heart rate monitors, the GPS, the clock, the calculations – away. I’m concentrating instead on why I’ve always loved being fit – being outdoors, enjoying the way my body moves, seeing interesting things.

It started while I was down in Brazil at the beginning of the year (I was there for a writing retreat with my writing teacher). Fantastic trip! But I didn’t get as much exercise as I had planned. It was way too hot and humid, I was unsure of where to run that would be safe, and didn’t want to get lost since my Portuguese is VERY limited. But I walked. A lot. And when I got to the fishing village where I stayed for several days, I swam in the ocean every day, I ran barefoot on the beach. I don’t know how far I ran or swam. I don’t know how fast. I just ran and swam.

It was fun.

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(my gym for a few days)

And since I’ve been back, I’ve tried to keep that same feeling. I’m not thinking about miles I need to cover if I want to race again. I’m not thinking about how much fitness I’ve lost, how fast or far I used to be able to run. I’m not thinking about my heart rate, my pace, my anything. Just fun. I’ve been hiking with friends. I’ve cross country skied in the blizzard. I’ve been running in the woods. My only thought is how my body feels and what I’m seeing around me. I’ve gone old school, back to what got me out and exercising in the first place – it’s a beautiful (or windy, or snowy, or sunny) day, let’s go out and play.

And it’s working. I’m getting out more regularly. I’m looking forward to it again. My body is starting to feel better. It’s making me happy. Enjoy!

IMG_1739IMG_1744 IMG_1746 (bobcat tracks, spotted on a recent trail run)

Julie

(Oh, and the writing went really well in Brazil – got tons of good work done! And if you’re in Iowa, or have access, one of my essays has just been published in The Examined Life, the literary journal of the University of Iowa Carver College of Medicine.)

Posted in beginning exercise program, benefits of exercise, exercise is fun, exercise while traveling, expectations, fun, goals, The Examined Life Journal, trail running, training, Uncategorized | 3 Comments

Step By Step Into The New Year

In the closing hours of 2015, I want to share my parents with you. Many of you have met them before on these posts: I’ve written about my mom doing pushups, my dad riding and adventuring, and both of them helping me out on my first 100M trail race.

Mom had hip surgery just before Thanksgiving – a re-do from hip surgery 2 years ago (really wonder if many docs keep track of their later failures). Because it was a re-do, it was a more complicated surgery. She was no weight-bearing on that leg for minimum 6 weeks. I went out for Thanksgiving, and stayed for a bit to help out. I was there when she was released from the re-hab facility, and helped to get her settled at home, just in time for Thanksgiving. She was able to get around a little, with a walker, putting no weight on her leg – not easy! Through this process she showed, once again, a great example of diligence and patience.

You may remember her from earlier posts, about how I taught her to do pushups at age 70. She started off doing easy wall pushups, and gradually progressed to incline, and then modified pushups on the floor. But she didn’t stop there. She kept building her strength until she could do full pushups – a lot of them.

In recent years, she’d fallen off of pushups because of pain in her hips. But she had learned the importance of upper body strength for daily tasks, so she still kept in pretty good shape. And that strength paid off with this surgery! Not only did it help her overall recovery, but her solid upper body strength made her rehab possible. Before she could be released from the rehab facility, she had to be able to get in/out of a chair/bed easily. She had to be able to get into the shower, transferring from the walker to the shower bench. She had to be steady as she scooted along with her walker. All of this was completely dependent on her upper body strength. All the PTs were amazed at how easily this little 78 year old could pull and push herself around so quickly after major surgery.

Once she was home, she kept up her hard work. She did her exercises with care and regularity – the PTs quickly got bored with her because they didn’t have anything to correct. And she walked. Every day. She went slowly and carefully. She didn’t overdo it. But she pushed herself. Each day she tried to go just a little farther, even if just a few steps.

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And all the while, she was helped out by my dad. He watched over her, helped with whatever he could. He helped get her in and out of bed/shower/car. He ran errands, he cooked, he cleaned.

Caregiving is hard work! It’s easy to get so busy with caregiving that people forget about their own self-care. But Dad worked on that. Almost every day (we did miss a few), he got down to the pool or the gym and did his own exercise. Not always his full exercise, sometimes there just wasn’t time. But he would do something. He walked on the treadmill, plus I gave him some new strength and balance work – made sure he kept up the strength necessary for caregiving.

They both were models of all the things I stress in my training: diligence, patience, gradual progression. Well done Mom and Dad!

So, in these closing hours and into the new year, I hold both of them up as great examples for all of us to emulate.

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May your New Year be healthy and strong!

Julie

Posted in pushups, strength training, upper body exercise | 1 Comment

Love overcomes evil ~ Eagles of Death Metal

In light of the events of the past couple of weeks, I’m going to step away from fitness and cancer for a moment. This blog is not a political or morality blog; it’s about fitness and cancer. But today I’ll stick my toes outside of my normal circle because it’s been impossible not to be thinking about and deeply troubled by recent events and reactions.

Last week I had been working on an essay about, in part, the weeks and months after 9/11. For a few days, I had been steeped in memories of terror and the goodness that arose from it. And then I turned on the TV to watch The NewsHour while I ate dinner. Images in real time flashed in front of me – my beloved Paris, awash in sirens and blood and fear. Of course, it’s not just Paris that I mourned. It’s also Syria, Lebanon, Russia’s plane, Nigeria, Mali, and the list goes on.

And then there was the expected backlash, but this time so much angrier than before. I have been ashamed of some of the hate-filled comments, which, to my ears, sound no different from the terrorists’ words.

I have no solutions, no answers for the big problems of the world. I have only a broken heart and sincere prayers for peace and comfort.

Instead of going further down this road, I want to veer onto another path. I want to turn to what’s close at hand. In the same way I think about fitness – taking small steps, making small changes, improving our bodies and lives with our choices – I would offer that one way to respond to chaos in the world is to look closely at ourselves and take the small steps that could make real improvement around us. Instead of shouting about hatred, try actually helping someone – especially someone who’s not just like you.

But that’s just naive, why-can’t-we-all-just-get-along crap, you’re probably thinking. Yes, of course it is. It’s not going to fix the world. But perhaps, it might make a tiny corner of it just a little better. Perhaps instead of shouting about how the government has to close our borders and kick people out (talk which can only be called hypocritical in a country which is completely made up of immigrants), some people could actually do something useful, like volunteer at a soup kitchen in their town, donate clothing to homeless vets, feed hungry families, teach people how to read, clean up a local park so others can enjoy it, volunteer to clean up or rebuild synagogues, churches and mosques when they are damaged or destroyed by our own local terrorists (because a whole lot of heartbreak and damage in this country is caused not by radical Muslims, but by terrorists who are angry white men).

No, none of these actions will “cure” terrorism. Like with cancer, taking small steps like going for a walk will not “cure” the disease. But, done regularly, it will help you feel better in the short term, and studies show it may improve your survival longterm. There’s so much that we cannot control, in the world and in our own bodies, but we can take control of the things that we can change, and take concrete actions which can improve things a little bit. And a little bit is better than none. And sometimes adds up to big improvements.

A couple years ago, when I was running a 4-day stage race in the Indian Himalayas, I had the pleasure of meeting a man who exemplifies what I’m talking about. My friend Shreekanth was always looking around him for ways to make the world just a little better. He approached each day with gratitude for all the good things in his life. And each day, he strove to take small actions that made the world or someone a little better. I wrote a post about all the runners – their strengths, and what I learned from each of them. He’s been on my mind a lot this last week. No, his approach will not fix the whole world, but it certainly won’t hurt it.

You can read the whole post here. But the following is an excerpt – meet my friend Shreekanth.

~Shreekanth: the oldest among us, from Mumbai. Shreekanth was consistently last. He was also consistently the gentlest and happiest of us. Whether he was running or walking, fresh or tired, Shreekanth had a smile on his face. He approached each run with gratitude. It gave me great pleasure knowing that, no matter how slow or tired I may be, Shreekanth was somewhere behind me, smiling and taking in all the beauty around him. And along the way, he picked up trash. Each day he would come in and empty out his pack of other people’s garbage. Spurred on by his example, we all began to pick up trash along our runs. He cared nothing for his race time, only that he enjoyed his time racing, and that he left the world a little better, a little cleaner than it had been.

Although I would like to be a better, faster runner, and want to learn what lessons I can from these other runners, the person I wish to emulate most is Shreekanth. I wish we all could be a little more like Shreekanth – grateful for every moment, and doing our best to make the world just a little better than we found it.

Be good to each other. Make the world better. Or at least don’t make it worse.

Julie

 

 

Posted in Uncategorized | 3 Comments

No, It’s Not a Pink Ribbon

Julie – yup, me. For this last day of October, the last day of my own little breast cancer names project, I name me. Because I’m 14 1/2 years from diagnosis (and still counting) and still have No Evidence of Disease. Because although most people think of me as “cured,” I can never take my good health for granted. Because every single day I am grateful to be alive and still be healthy – every single day. Because breast cancer can and does come back, no matter the stage at diagnosis, no matter whether it was found early, no matter how many years have passed. Because far too many people I have known with this disease have died. Because I’m tired of saying goodbye. Because “awareness” is not a cure. Because scars are not cute or sexy. Because breast cancer is most definitely ‪#‎notapinkribbon‬.

This is how I chose to end my October campaign, with myself. All month long, I’ve been posting names of people I know or have known with breast cancer. The first half of the month were names of people who have dies. Then I transitioned into names of people living with the disease, most of whom are living with Metastatic Breast Cancer – breast cancer which has spread to other parts of the body. But even for those of us who are not Stage 4 or Metastatic, breast cancer is part of our lives forever. We live with the knowledge that our cancer can come back at any time. Early detection or early stage is good, but does not guarantee we will remain cancer-free. Many of the people I named had their cancer come back after 10, 15, 16 years or more. Many of the people whose cancer spread were initially diagnosed with early stage disease.

We still need awareness. We still do need to improve awareness and access to screening for certain populations in this country. We do not all start on a level field. Poor women, minorities, and men could still use better awareness and better access to screening and care. Unfortunately, most of the big awareness campaigns do not target the groups who really need it. Too many are aimed at middle class white folks – just preaching to the choir. But most importantly, we lose track of the fact that awareness is not a cure.

And this is why I started listing names throughout the month of October. “Awareness” is not enough. Early detection is not enough. We are learning more and more that the type of breast cancer, the individual makeup of the cancer cells, is perhaps a more important measure of who survives. And to learn more, we need research.

Throughout the month, I’ve gotten a lot of comments from people. Some have asked to add names to my list. Some have started their own list. Many people have thanked me, and even more have offered hugs. Thinking about friends and colleagues who have died or are living with Metastatic BC every day does sadden me. And it angers me. But unexpectedly, I have also enjoyed it at times. I’ve thought about people I hadn’t for a while. Memories of them have made me smile. I’ve seen examples of tremendous beauty and grace from some of them. I have learned important things from them.

To everyone on my list, and so many more, thank you for enriching my life, even for a little while.

To everyone else, these are the names of breast cancer. We are not pink ribbons. We are not pink confetti or streamers. We are not “boobies” or “ta-tas,” with or without bras. We are people, women and men, with names, with faces, with families, with friends. Please keep us in mind. We are #notapinkribbon.

Julie

 

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