cancer

Get Up Running – Marjie

Welcome to the inaugural post for what I hope can become an inspirational series about running during and/or after cancer – Get Up Running. This should go without saying but if you’re recovering from cancer and want to start running, clear everything with your doctors beforehand.

My first friend to respond to my inquiry was Marjie from Pink and Pearls. This woman has the kindest soul I have ever encountered, and I am so privileged to count her as a friend.

Name: Marjorie Miller

finish

Type of cancer & your treatment:

Breast cancer; surgery (I also had childhood Leukemia at the age of 12, and for that, three years of chemotherapy).

Were you a runner before cancer or any other sports before cancer?

I ran my first 5K literally the same day I found a breast lump. (race that morning, found the lump in the shower that afternoon). I started running a few months before diagnosis, but was never a runner before cancer.

Did you run during treatment? If no, how long after treatment ended did you take up running?

Yes, I tried to run in between surgeries. I had six total surgeries, including a double mastectomy with reconstruction and lat flap. After each surgery when I got the go-ahead from my doctor to resume physical activity, I attempted to run again. It didn’t always happen with the expanders but I tried.

How has running helped you during and/or after treatment, both physically and mentally?

Mentally it helps me feel like I have control over my body again. It helps me feel in control of my health and my life. Breast cancer took my breasts but it can’t take what I do with my body, which is running. When I run it’s just me and my body; I have complete control. I take myself as far as I want. I push myself as much as I can. Nobody else gets a say when I lace up my sneakers. Physically it’s made me stronger and healthier. It gives me so much self confidence. It gives me energy, helps me deal with stress and anxiety, and I feel it keeps me sane 😉

What did your doctor/doctors say about you running?

They applaud it and encourage it.

What has big your biggest challenge running after cancer?

Being comfortable with the implants. My chest still feels tight and I am still regaining muscles under my chest wall. Running sometimes hurts and pulls at my chest.

What would you say to someone ending treatment or just out of treatment who might be intimidated to take up running?

Take it slowly. Take it one day at a time. Start with what YOU feel comfortable doing. Remember: when you run, you run for you and nobody else. My husband said to me before my first 10 miler a few weeks ago: “Just run YOUR race.”

You’re only running for yourself. Not to impress anyone else. Start with walking, slow jogging, taking breaks, whatever you need. You’ll find with time your energy and stamina will grow. Your confidence will grow. It does get easier and the more you do it, the more you love it.

Run happy!

More than just a pet

In the months prior to my diagnosis, the Boyfriend and I had been discussing when it would be a good time to get a dog. One of the many reasons we had bought the house earlier that year was its double lot – perfect for a dog. For about five months after moving into the house, we devoted most of our time and energy into clearing up the backyard, which the previous owners apparently forgot was a part of their home. Weeds, years of un-raked leaves, literally garbage behind the detached garage, and so many “garbage” trees and a fence falling apart.

Once we got that all cleaned up, the next step was a dog. However, that fall, I was diagnosed with breast cancer.

Two months into my treatment – including the initial shock, lumpectomy and beginning chemotherapy, I had come to the conclusion: it’s not a good time to get a dog. I couldn’t see managing a dog, working full time and undergoing treatment for cancer. Even though I was working from home, I still thought it would be a terrible idea to get a dog.

When the Boyfriend called me from the local animal shelter in mid December because he couldn’t think of a Christmas gift for me and somehow found himself at this shelter, I didn’t protest at all. In fact, I forgot about all the reasons why I shouldn’t get a dog, and all I could think was:

omgpuppiesomgpuppiesomgpuppiesomgpuppies

Boomer at 8 weeks old

The shelter named her Brandy Butter, but we named her Boomer, after a character on Battlestar Galactica. (Back story: when he and I first started dating, one of our favorite things to do when we hung out was watch this show together.)

Two days after we adopted Boomer, or she adopted us, my hair fell out. I vividly remember going into my bathroom, taking a pair of scissors, cutting off my shoulder-length hair because my scalp hurt like a mutha. I stared at my reflection (and a crazy-looking woman looked back) for a couple of moments, and then I said aloud, “Fuck it. Go downstairs and cuddle your puppy.”

This is me, cuddling a puppy.

During chemotherapy, Boomer wasn’t just a pet to me, she was a welcome distraction. Before we adopted the dog, my brain was pretty much all cancer, all the time. What if it’s really not Stage 1? What if I can’t withstand chemo? What if I go into anaphylaxis? What if this is just the beginning and will never end? When Boomer came into my life, I had to worry about her. Did she need to go outside? Is she hungry? Wait, it’s way too quiet – what shit is she chewing up?

Boomer was a positive light in a very dark time. Sometimes she tested the very little patience I had, but at the end of the day, she was a cuddle monster. She followed me around (like a puppy, har de har har) and when I was crying because I was positive I just couldn’t take any more treatment, Boomer would just stare at me, head tilted in worry.

Why so sad, Mom? You can just pet me, Mom? I’ll make it better.

Boomer was also something positive I could talk to friends and family about during treatment. I would tell them about my most recent treatment or surgery, but then I would tell them about the newest cutest thing the Boomer dog just did. My Facebook status updates were half cancer, half puppy shenanigans.

When I was recovering from chemo, Boomer was my reason to get outside and start walking. If it wasn’t for her, I would have stayed inside much more than I did. I’d get out of the house 45 minutes a day, or I’d take her to the dog park on the weekends. She kept me from becoming a complete shut-in during chemo and radiation.

Me and Boomer after my double mastectomy

After my double mastectomy, I was on FMLA leave for six weeks. Boomer kept me company while I slowly shuffled up and down my stairs and slept off my pain medication. We posed for selfies, we slept on the couch and we went to the dog park when I had to get out of the house.

I don’t know if I’ll ever have children and sometimes, I don’t know if I want to have any children. This might be the part where you think, “Oh great, she’s going to compare her dogs to children.” Nope, not in the slightest. Boomer and Mal are my beloved pets, and I adore them with everything I have. I’m going to take as good care of them as I can until death do us part. I love Mal, but Boomer is definitely special to me. Boomer is more than just a pet – she’s the creature that got me through two of the roughest years of my life. She was my lifeline during treatment.

If you are a young, single woman just diagnosed with breast cancer.

This letter is targeted toward a young woman in her 20s or 30s – someone who isn’t married or has kids. Someone like me.

To a young woman recently diagnosed with breast cancer,

I am so very sorry. I wish I could tell you that everything is going to be okay, but I don’t know that. Nobody knows, and I wish I could assail you with all the platitudes in the world, as if they could actually take shape and wrap you in a warm blanket, but that’s never helped anyone. If you are looking for platitudes, then I am the wrong blogger for you. (I truly believe that our language when it comes to cancer has become so superfluous and hyperbolic, veering drastically away from cancer’s reality. I told the Boyfriend after hearing how I am such a “fighter” for the twelfth time that: “If one more person says I’m a fighter, I am going to straight up fight them. Seriously, I will drop the damn gloves and take a swing.”)

https://twitter.com/xeni/status/423731770773618688

Nothing breaks my heart than hearing how another young woman joined the cancer club, where we are the minority. According to the American Cancer Society’s Breast Cancer Facts & Figures 2013-2014, the median age for breast cancer between 2006 and 2010 is 61. We’re a part of a club that is comprised of women the ages of our mothers, aunts and grandmothers. The Young Survival Coalition’s website states:

In 2009, the American Cancer Society predicted more than 190,000 new cases of breast cancer in women. They estimated that roughly 18,600 of these women would be younger than 45.

The amazing Gilda Radner said it best:

Having cancer gave me membership in an elite club I’d rather not belong to.

Cancer in young women is so rare, but after you’re diagnosed, it seems to be something you hear about a lot more often. Having cancer when it seems like most of your friends are getting married or having children can be one heart ache after another. You’re in the hospital getting tests or scans, and you’re surrounded by those 15 to 20 years older than you.

My advice to any young woman who has been diagnosed with some type of breast cancer:

1.) Do not google your disease because typically, if you go looking for trouble, you’ll end up finding it. Googling is not your friend when you are diagnosed with cancer. If you are going to google, please take the advice from Andrew Griffith’s advice:

Google wisely. Google (and Wikipedia) are a reflex. Don’t fight it. However, when looking at suggested links, go for more reliable sources. Any national cancer (e.g. American Cancer Society, Canadian Cancer Society) or health agency (e.g., National Cancer Institute), major cancer centre (e.g., MD Anderson and others), and any specific cancer organization (in my case, the Leukemia and Lymphoma Society, and LLS Canada).

The internet can be the Wild Wild West, and anybody with internet access can post their crack-pot theories about cancer. (“You can cure cancer with eating nothing but carrots!” or “.) If you’re going to look for information, go to reputable websites. A great source for information can be other women currently going through treatment or who recently went through treatment. One place to find a great source of information would be the BreastCancer.org’s message boards. You can find someone your age, or someone with your type of breast cancer, or another patient who lives nearby.

This is another great resource for information – the #BCSM community is amazing. You will never find another group of individuals more passionate and focused not only on research, or awareness for the rarely talked about breast cancers, but helping other women (and also men) going through treatment. If you have a twitter account, browse through the #bcsm hash tag, and you will be guided however you need. If someone doesn’t know the answer, they may know someone who may know the answer. I’ve befriended many people from the #BCSM community and my life has been the better for it.

Definitely, always and forever, take the advice of your medical team. If you have any questions of something you have learned or come across, the best person to ask is your doctor.

2.) If you think you may want to have a child later down the road, please tell your doctor and get a recommendation for a great fertility specialist. When you are diagnosed with breast cancer, sometimes you live minute by minute. Hour by hour. But you should look ahead and talk with a fertility specialist about your options because cancer treatment may take those options from you. I discussed cancer and fertility a couple of months earlier.

3.) Lastly, this is something I wish I had done when I was first diagnosed – get thee to a counselor. Don’t pass go. Don’t collect $200. Find help. Find someone, like a therapist, or a support group, and take care of your mental health. I made the mistake of thinking, “Oh I can handle this,” but I got so overwhelmed after my fifth surgery (i.e., the tissue expander exchange surgery) that I just collapsed. To say it was bad would be the understatement of the year. I could barely function either at work or in my personal relationships. With the love and encouragement of my friends (one of who researched nearby therapists and found the one I still go to a year later), I went to a therapist and was able to learn how to deal with my post-cancer anxiety and depression.

I should have seen a therapist sooner, like as soon as I was diagnosed. I truly believe that if I had, I may not have sunken so low after my fifth surgery.

Going through active treatment, you feel strangely safe and secure, even though you are living day-to-day in a passive role. Every day, you are doing something to fight cancer. Chemo kills all the bad cells! Radiation zaps the cells! Surgery removes the cells! It’s a lot to process, to say the least. Mental health is often overlooked while you’re going through treatment since the primary focus is on your physical being.

Depression and anxiety is so common after a cancer diagnosis. Without the safety and security that active treatment gives you, you feel lost. Alone. Consumed with the thoughts: “What if it comes back?” The Dana-Farber Cancer Institute website has great advice on how to cope with this fear:

Be informed.
Learning about your cancer, understanding what you can do for your health now, and finding out about the services available to you can give you a greater sense of control. Some studies even suggest that people who are well informed about their illness and treatment are more likely to follow their treatment plans and recover from cancer more quickly than those who are not.

Express feelings of fear, anger, or sadness.
Being open and dealing with their emotions helps many people feel less worried. People have found that when they express strong feelings like anger or sadness, they are more able to let go of these feelings. Some sort out their feelings by talking to friends or family, other cancer survivors, or a counselor. Of course, if you prefer not to discuss your cancer with others, you should feel free not to. You can still sort out your feelings by thinking about them or writing them down on paper.

Please, please please take good care of your mental health while you go through treatment. If it’s online or in person, make time. Asking for or seeking help when you’re diagnosed with breast cancer isn’t a sign of weakness. It shows a real sign of strength. Take care and be kind to yourself.

Shame on you, Guardian US

Last night, the Guardian published a hit piece on Lisa Bonchek Adams, a woman who blogs and tweets about living with metastatic breast cancer. This is Lisa.

According to Lisa’s About Me page on her blog, she was originally diagnosed with Stage 2, Grade 3 breast cancer in October 2006. Six years later, Lisa learned that her cancer had metastasized to her bones, meaning she has Stage 4 breast cancer. Even though she underwent a double mastectomy, chemotherapy and the removal of her ovaries and Fallopian tubes. This woman did pretty much everything to reduce her risk of recurrence, and the cancer returned. Besides blogging, Lisa tweets about her health and treatment. As the picture above shows, as of January 2014, she has over 7,800 followers. I am one of those followers. I follow many women in the #bcsm (breast cancer social media) community.

When I heard about Emma G. Keller’s piece regarding Lisa and tweeting, I was livid. When I read this op-ed of Ms. Keller’s, I felt my blood pressure sky rocket. First, the headline and subheading were offensive:

First, comparing a woman’s Twitter account to taking selfies at a funeral is just nonsensical and downright offensive. Lisa isn’t holding up her smartphone and taking cheesy pictures of herself in inappropriate places. She is telling her story and letting her readers know what is happening in her life and health.

Bitch, this is a selfie.

This made me livid:

She has been scrupulous about keeping track of her seven year decline. Her journey began with six month routine postpartum checkup after the birth of her third child. You can read all about the details of her disease and treatment on her blog right up until about this morning, which is when she posted her latest entry, only a few hours after the previous one.

Seven year decline? What the hell is this horseshit? She had early stage breast cancer, went through treatment, and then she was in remission until October 2012. There was no decline. For a journalist, shouldn’t you do something called fact checking? How about interviewing Lisa or those who know her?

This is my favorite part:

As her condition declined, her tweets amped up both in frequency and intensity. I couldn’t stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?

I have a guess as to why she is so obsessed, and it’s a fact she doesn’t reveal in her hit piece on Lisa. Ms. Keller was diagnosed with DCIS in 2012.

But no, I was diagnosed with breast cancer on 5 January. Ductal Carcinoma In Situ, or DCIS as it’s known, is the fastest growing form of breast cancer today, thanks to new developments in mammography. But at Stage 0, level 1, it’s also the smallest, earliest form. (This is a cancer that, until recently, was known as “pre-cancer”.)

(I don’t know what she’s talking about when she says level. Maybe she means grade? This also demonstrates how little she apparently knows about breast cancer.)

You know what I find unethical? A woman who describes her bout with cancer as “my 40 day breast cancer” casting any negative light on a woman who will have breast cancer for the rest of her life. I suspect Ms. Keller is projecting her own fears that her DCIS diagnosis created in her. She asks why is she so obsessed? I don’t know, Emma – why don’t you unfollow Lisa and any other Twitter users with metastatic breast cancer if you can’t handle the reality they present?

I get it. I was diagnosed with Stage 1 invasive ductal carcinoma in 2010, and my biggest fear is a distant recurrence. When I feel a weird, unfamiliar back pain, I briefly wonder, “Is this a sign of mets?” That horrible nagging thought rarely leaves my side. Despite this fear and my anxiety about breast cancer, why do I keep following Lisa or Jada or Phyllis or Annie or Jude? Or why did I follow Jen Smith, who recently passed away from metastatic breast cancer?

I don’t think these (mostly) women with metastatic breast cancer should be ignored. Their voices should be the loudest in the breast cancer discourse, not those like Ms. Keller. They are the ones who live in three month increments, living life from scan to scan. They should be blogging, giving interviews and tweeting all they want. Instead of telling them to be quiet, let’s tell them to shout louder. Maybe, then, the ignorant (not rude, the real definition of ignorant) folks will actually listen. We need to be #fearlessfriends, allies to them, not trying to silence or shame them into being quiet. It’s bad enough that the month of October is basically a FU to those living with metastatic breast cancer. They should never be shamed into being quiet.

Ms. Keller, instead of obsessing over someone’s Twitter, maybe you should deal with the fact that there is no cure for breast cancer. Educate yourself. Your cells went rogue on you, and there is no guarantee that these cells won’t attack again. Since Lisa’s Twitter is creating too much anxiety or obsession or whatever this was, here’s a novel idea: hit this button.

It’s really not that hard.

You need to redeem yourself, Ms. Keller. Right now, you’re the writer who published a hit piece about a woman currently hospitalized from the disease I bet still gives you nightmares. Shame on you. Lisa should be concentrating 100 percent on her, not have to waste any energy on someone like you.a

Get Up Swinging

The boobs are fake. The snark is real.