Breast Cancer… Through the Eyes of a Son

Dear Friends,

When someone is diagnosed with cancer, the effect on the patient is pretty obvious, and sometimes we forget how much and in what ways the diagnosis may impact the family members and friends.  In this school assignment  to write about a first time experience,  Jacob opens our eyes to what he felt when his mother, Angel, went through breast cancer.  We are grateful that he allowed us to share his essay.  We think Jacob is pretty amazing, and we are sure you will agree after your read his words.  

Hugs, Mary Beth

While I don’t like to talk about this often, as it makes me feel like I’m “boasting” about a struggle that was not truly mine, I’m also often told that it’s a little uncaring to not note my part in it at all.  So, for my essay, I will be writing about my first experience with breast cancer in my family.
Before my mother was diagnosed with breast cancer, I don’t think that anyone in my family (including me) knew that much about cancer, other than the basics: That it has no “cure” yet, that it kills a lot of people, and that a lot of people are working to find out more about it.  So, when the news hit, it significantly changed how we saw the disease and, in a way, the world as a whole.30072_1490615910064_7480650_n

It was April, 2010, when I was told that my mom was diagnosed with breast cancer.  I was in the 7th grade, and was only 12 years old at the time, so I didn’t really know how to react.  She said that she was actually fairly lucky, since the cancer was found on a routine mammogram, and it could be removed.  We found some comfort in this, but we still were very scared.  I had no idea what I could do or what would happen, but I still tried to help her when I had the chance.  She tried to comfort us by doing things like bringing home books on how to deal with cancer in the family, ranging from very factual booklets, to childish picture books, but they never really helped me.  While I did care, I didn’t want to read about it when it comes to how it would affect me.  While I had full faith in my mother overcoming the disease, the books only felt like salt in the wound.

Her treatments carried on into high school, and here’s where we all got to see its effects first-hand.  They tend to make cancer treatment out to be much simpler than it actually is.  Cancer treatment is made out as just chemo, radiation, and hair loss, when that is only part of it. 33470_1661257295992_3735872_n There were many days where my sister (who was about 7 years old at the time) and I would have to be home alone because mom was in the hospital, and dad had to make sure she was okay.  When she was home, she was no longer as energetic as she was before.  She walked around in a half-asleep state, and didn’t have the energy or strength to preform many basic tasks.  For the most part, she may as well have been bedridden.  As the time went on, we got to see all her hair disappear.  When I say all her hair, I mean her eyebrows and eye lashes as well.  She went from having long brown hair, to lacking all the subtleties you would expect of the human head.  The strangest thing was that this was the easiest part of it all.  We all even found humor in the situation, in how silly it was.  My mom even joked about how she “now knows how a newborn baby feels”.  You could always get fake eyelashes, draw on fake eyebrows, and get a bunch of silly wigs and hats.  However, you could not get a replacement for all the pain that the treatment makes your body feel, nor could you get back the energy that it takes away.

To make matters worse, my dad works in the Navy, and had to deploy a few months after my mom was diagnosed.  Combined, these two things had a very powerful effect on everyone.  Throughout all of this, I tried to not let it affect me.  I told people at school, both friends and teachers, but I tried not to bring it up often.  This wasn’t only that I didn’t want to talk about it, but also because it felt like I would be making an excuse at the expense of someone else.  My mom was the one suffering, while I was perfectly okay.  To me, claiming that it affected me academically would be faking a broken arm after seeing the attention that the person with the real broken arm got.  I did care about my mom’s health, that’s why I didn’t want to undermine it by complaining about my “suffering”.  While it did affect me heavily, it would have been arrogant for me to “take credit” for the suffering that was not experienced by me.

Eventually, my mom was able to overcome the cancer and successfully had it removed from her body.  But, this taught me another thing I didn’t know about breast cancer.  A lot of surgery goes into attempting to bring back healthy tissue that was removed.   The most surprising thing was that the reconstruction surgeries are the ones that seemed to be the most dangerous.  While the chemo made my mom weak and sick, the reconstruction opened up the possibility of much worse things.  One of the scariest experiences I had during this was when my mom began to feel unusually sick.  We all watched her to make sure she was okay, even calling over a friend who was a nurse.  That’s when my mom and her friend realized what was going on.  The device put in place to help reconstruction had caused a major infection to begin to develop.  This meant that it must be removed, alongside all progress towards the reconstruction.  That was when I saw my mom go from seeming okay, to being in great sorrow and despair.  She didn’t want to have it removed, even refusing to go the hospital at first.  I didn’t understand this, and I’m not sure I even understand it now.  The tissue that was lost was not, as far as health goes, important.  It also didn’t make her appear strange in anyway, with even having many thing that would hide it if she felt otherwise.  But still, she seemed to initially choose her health over losing it.  This was the closest I felt to thinking that she was going to die.  She eventually went to the hospital and had it, as well as the staph infection, removed.IMG_8739

After a few years of treatment, the worst is now behind us.  However, the effects of the cancer are still present.  My mom is still going through reconstruction surgery, but nothing even coming close to before has happened.  The cancer has not returned, and I hope never will.  Her hair has regrown, and she has regained much of her strength.  She’s now active in the breast cancer support group “Beyond Boobs!” and has found a lot of people who have or are going through same thing as she did.  Everyone in my family is now more aware of the effects of breast cancer after seeing what it can do first-hand.

-Jacob (16 yrs)

02/07/14

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How do You Wear a Lymphedema Compression Sleeve with Style and Subtlety? You Don’t

Hennahead2How do You Wear a Lymphedema Compression Sleeve with Style and Subtlety? You Don’t
By Ami Dodson

One of the many challenges and frustrations of having a chronic condition that mandates wearing a visible device every day is when that disability is relatively unknown outside the breast cancer community. Imagine that you had diabetes and needed an insulin pump to regulate your blood sugar. Someone might catch a glimpse of your pump under your clothes and ask what it is. “An insulin pump,” you’d say, and the conversation could be over.

Now imagine that you have lymphedema and you must wear a compression sleeve every day, and a tighter compression sleeve when you exercise or fly in airplanes. Imagine you are in a yoga class, focusing on your Ujjayi breath, when suddenly you hear the instructor say, “You there – you in the back! Yes, you. What’s that thing on your arm?”

Flustered and aware that a room full of strangers is now staring at your misshapen figure, you stammer, “Uh, um, a compression sleeve.”

“What’s it for?”

“I, uh, I have lymphedema.”

“What’s that?”

“It’s a chronic condition that involves swelling of the extremities due to insufficient lymphatic fluid movement throughout the body secondary to removal of the lymph nodes and common in women who have had mastectomies to combat their breast cancers. Shouldn’t we all come out of Warrior Two now?”

Okay, that last bit is an exaggeration, but the first part of that exchange really did happen to me during a yoga class. The instructor was tactless and callous, but the real problem for me is that there is no easy answer to “what’s that thing on your arm?”

Variations of that conversation happen to me all the time, mostly by well-meaning people who assume I have sustained some minor injury, like spraining my elbow, and are legitimately concerned about my well-being. Although one person asked me if it was a cover to hide embarrassing tattoos. At a cocktail party. For my work.

It’s been a challenge for me to come up with something to say that is polite and clear, but also firmly conveys that this is not a conversation I wish to have. It’s never easy to discuss your breast cancer with casual acquaintances, and there is really no way to avoid going from “I have to lymphedema” to “I got it because I had a double mastectomy.” And yes, there was chemo. And yes, it was awful. And no, I do not want to hear about your second cousin twice-removed who had breast cancer and cured herself using only vitamins and meditation. Amazing!

All of this is compounded by the fact that the sleeves are ridiculously ugly. (Yes, I know about LympheDivas – they are fantastic, but unfortunately, they don’t fit me, so I’m stuck with the Medi brand sleeves, which are unattractive in a way that only a true medical device can be.) You can’t wear long sleeves all the time because it is difficult to fit your enormous arm into your regular size clothes. So you have to buy one size larger shirts to accommodate your arm, which makes the rest of your torso look like you either borrowed your mother’s clothing or don’t know how to dress yourself. So you start experimenting with sleeveless tops or tank-dresses and we’re back to the original problem of the ugly compression sleeve. And that it’s winter and you’re freezing.

So what’s a girl with lymphedema to do? My personal solution has been to invest in a lot of very sparkly jewelry that makes me feel glamorous no matter what monstrosity is on my arm. 12-27 Bracelet I am however, still looking for a good, short answer that would have shut down my embarrassing exchange with the yoga instructor.

Have some ideas? Fabulous. Leave them in the comments and let’s have a conversation on our terms, on our time, in our community. No downward-facing dog required.

Namaste.

Related Reading: On Lymphedema, Serial Killers, and Therapeutic Torture Devices

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On Lymphedema, Serial Killers, and Therapeutic Torture Devices

My Lymphedema Experienceami-rectangle300x366
By Ami Dodson

One sultry morning in July 2010, I sat down to watch an episode of Dexter. I was about two-thirds of the way through my regimen of chemotherapy for Stage IIb breast cancer, and I found something soothing in the blood-drenched gore of early Dexter shows. Plus, if I took my pain meds during the opening credits, by the time Dexter had sliced, diced, and dumped someone in the Miami Bay, my pain would have abated and I would likely feel well enough to shower. Or walk to the mailbox, if I was really up for a challenge.

It Started with a Tingle

Anyway, on that particular day, as the glorious Michael C. Hall fried up his steak and eggs, I felt a funny tingling in my left arm. “Huh,” I thought. “That’s weird.” By the time I watched Dexter Saran-wrap some notorious villain to his table and commence dismemberment, I realized my left arm had swollen to gargantuan proportions. “Well,” I said to myself, “that was fast.”

I quickly scheduled an appointment with a physical therapist and lymphedema specialist after my arm ballooned up to four times its normal size. They took my measurements and said, “Yup. That’s lymphedema.”

Quick Lymphedema Tutorial

A quick tutorial for the uninitiated: Secondary lymphedema can affect anyone who has lymph nodes removed from nearly any part of their body. Women who have had mastectomies with lymph node removal are particularly high risk. When I had my double mastectomy in April 2010, the prevailing wisdom was that the surgeon would check your sentinel lymph node, the one closest to your breast ducts, and if there was evidence of disease they would remove the entire cluster from under your arm.

In my case that turned out to be 19 nodes, only the first one of which had microscopic disease. A few months later, the standards changed: Even if a positive sentinel node was found, surgeons would remove only those nodes that had evidence of cancer, leaving the rest in place. This less aggressive surgery significantly decreased the risk of lymphedema.

I’m not going to linger too long on the causes, risk factors, and percentages of lymphedema among breast cancer patients. You can read about those here (http://www.cancer.gov/cancertopics/pdq/supportivecare/lymphedema/patient), or here (http://www.lymphnet.org/), or here (http://www.mayoclinic.org/diseases-conditions/lymphedema/basics/definition/con-20025603). I’d like to focus instead on my own experience and my efforts to control my condition, rather than letting it control me.

Of Sleeves and Wraps and Machines

After a consultation with the lymphedema therapist, I was fitted for compression sleeves and taught how to wrap my arm in bandages. The initial treatment, an attempt to reduce my swollen arm to just two or three times its normal size, involved wearing “wraps” about 23 hours per day. These wraps made my arm look mummified and were a colossal hassle to put on, take off, wrap up, wrap off, etc. I was “fortunate” my first flare-up was over the summer. It is impossible to put a sweater on over these things. 09-12 Lymphadema Bandages I also had to see the therapist every day for an hour, four or five days per week, for manual lymphatic drainage. And I had to learn how to self-massage my arm in order to move the collected fluid out of my arm and into the rest of my body.

When the lymphedema got really bad, I was fitted for a Compression Machine. (See photo.) This torture device involved lying perfectly still for an hour while a series of tubes and air pressure pumps massaged my entire left side. Creepy, weird, uncomfortable, and unsustainable. How many moms with kids under the age of five do you know who can lie still for an hour a night before bed? That’s right: none.compression-machine2

Chronic but Survivable: Time to Thrive!

Finally, after months of intensive therapy, daily maintenance, endless doctors’ appointments, and chronic pain, my lymphedema stabilized. I still wear a compression sleeve every day, but I’ve stopped wrapping at night and using the Machine. I have flare-ups when I fly long distances or when the weather turns hot and humid. The pain is chronic but manageable.

Now, three years later, my lymphedema is under control but by no means resolved. After that dark day in July, I commenced what would be a long, difficult, painful journey toward managing a chronic condition. A journey that, unfortunately, I am likely to be on for the rest of my life.

BUT! I am alive and intend to stay that way for many years to come. The lymphedema is a bitter reminder of what I went through to overcome breast cancer. But it’s also a reminder that I did come through. I did survive. And I will continue to thrive.

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Next post! Next week I’ll share some lymphedema tips and tricks and offer some photos of my favorite compression sleeves.

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As Breast Cancer Awareness Month Ends, Beyond Boobs! Takes Breast Health Action

As we close out Breast Cancer Awareness Month at Beyond Boobs!, we’d like to take a moment to remind you that breast cancer doesn’t care what month it is, nor is it partial to pink.

Beyond Boobs! exists to help the wives, mothers, and daughters who have breast cancer now. That’s why we preceded Breast Cancer Awareness Month with a post called, “3 Things Young Women Need to Know About Breast Cancer.”  That’s why our Good Health Fairy asked you to get Beyond Breast Cancer Awareness to Breast Health Action.  And that’s why when October ends, Beyond Boobs! carries on.

The Pink Ribbon and PinkwashingMB - headshot

October, known for foliage, football, and “fiends,” now has become synonymous with the pink ribbon. While the pink ribbon campaign has been effective in focusing public attention on the serious topic of breast cancer, it has also spawned a pink industry profiting from the use of the ribbon with promises to benefit various breast cancer charities or often just the vague “breast cancer research.”

The widespread placement of ribbons on products ranging from chia pet kits, dog costumes (really!), to rubber duckies has, in some cases, made people immune to the original, well-intentioned objective of the campaign. Even more serious is the emergence of the “pinkwasher.” This is a company or organization that claims to care about breast cancer by promoting a pink ribbon product, but at the same time produces, manufactures and/or sells products that are linked to the disease. To learn more about pinkwashing, click here: Think Before You Pink.

Take Breast Health Action NOW!

At Beyond Boobs!, we have been promoting breast health ACTION from our very beginnings, six years ago. Recognizing that “breast cancer awareness” was very passive (who isn’t aware of breast cancer?), we were one of the first organizations to focus on breast health and changing behaviors, and other organizations have followed our lead. And unlike many other non-profits, we aren’t focused on a future cure, we are helping women with breast cancer NOW.

As we work with young women diagnosed with breast cancer, we are helping to restore them to health – mind, body, and spirit – educating them about reducing their risk of recurrence, and encouraging healthy habits. We also educate all women about managing their own risk of breast cancer, advocating for their health, and urging a lifestyle of wellness.

So as you wade through the sea of pink ribbons this fall, we hope you will pause and do the following:

  • Women, ask yourselves, “Have I checked my breasts lately? Do I need to schedule my annual mammogram?” And men, please urge the women you love to take these actions. Your encouragement is often enough to compel us to do what many of us fear.
  • As you use the pink ribbon to show your support (and we wholeheartedly thank you!) to the over 220,000 women who will be diagnosed with breast cancer this year and the almost three million breast cancer survivors, we encourage you to learn who benefits from your charitable purchase and what percentage of your money benefits is donated.
  • Remember the many lives that have been lost to breast cancer and embrace the women who are fighting it now with grace and courage.

October is over, but we’ll continue to spread the word…we hope you’ll join us.

 

Warm hugs, Mary Beth

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Beyond Breast Cancer Awareness to Breast Health Action

Hello Breast Cancer Awareness Month! Wait! There’s something wrong here. We at Beyond Boobs! want you to focus on your breast health, not cancer, and not just this October, but every month. And though awareness is good, it won’t help with early detection if there is a problem UNLESS you DO what you need to “check them out” regularly.

So, get to really KNOW your breasts:

  • admire them (and you-we are ALL beautiful!) in the mirror as, say, you brush your teeth – look for any changesGHF
  • do a monthly self-exam where you feel them too
  • beginning at age 20, get regular clinical breast exam at least every 3 years
  • if 40 or over or at high risk (check with your doctor), get an annual mammogram (in your birthday month is an easy way to remember this and is a gift to yourself)

So find an “accountability friend” to help you make all this a priority (you’ll be helping her too) and go out to lunch or shopping (my favorite!) to reward yourselves for Taking Charge of your breast health!

With healthy wishes this and every month,

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