Raw October — Day 4 (Y-ME Closes Shop)

Raw October: raising breast cancer awareness — one fact, figure, feeling, and photograph at a time.

Y-Me, a well-known breast cancer charity known for its 24-hour hotline and annual Mother’s Day walk, was founded nearly 35 years ago by breast cancer survivors Mimi Kaplan and Ann Marcou, who found support in one another and decided to reach out to others. This past July, Y-Me closed its office doors, shut down its website, and stopped taking hotline calls. While some hope this is just a transition, it seems Y-Me cannot financially sustain its existence, and this may be the end of a national organization that held the hands of many, many women and men.

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Raw October — Day 3 (Interview With Joey)

Raw Octoberraising breast cancer awareness — one fact, figure, feeling, and photograph at a time.

Joey was 3 years old when I was diagnosed with breast cancer; now, he’s 11. I recently asked him some questions regarding his awareness about the disease. Here’s what he said:

Me: How old were you when I got breast cancer?
Joey: 5

Me: How old was I when I got breast cancer?
Joey: Wait, let me think, 33 or 34.

Me: How did you feel when I got breast cancer?
Joey: Nothing really because I don’t remember it.

Me: What do you know about my breast cancer from what others have told you?
Joey: That it was stage I, that you lost your hair, that you had to have chemotherapy or something, that you had red and blue lines drawn all over your stomach or boobs — what was that for, anyway?
(I told Joey that the red and blue lines were from permanent markers; they were used to line up the machines at the very start of my radiation treatment.)

Me: When I say the words breast cancer, what do you immediately think?
Joey: Cancer in your breasts, in the tissue.

Me: What is breast cancer?
Joey: It is a disease that starts at stage I and goes to stage IV, and stage IV is the worst.

Me: Do you know anyone else who has had it?
Joey: No.

Me: What do you think people should know about breast cancer?
Joey: That you can die from it.

Me: Do you know what happens when I go see doctors?
Joey: They check your boobs. Hey, do the doctors get to see you with your shirt off [Joey laughs]?

Me: What would you say to other kids whose moms have breast cancer?
Joey: I don’t know.

Me: Does breast cancer scare you?
Joey: Yes. Can men get it?
(I told Joey men can get breast cancer but that male breast cancer is not as common as female breast cancer.)

Me: Any final words you want to say about breast cancer?
Joey: I hope I don’t get it. Are you going to put this online?

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Raw October — Day 2 (Interview With Danny)

Raw October: raising breast cancer awareness — one fact, figure, feeling, and photograph at a time.

Danny was 18 months old when I was diagnosed with breast cancer; now, he’s 9 years old. I recently asked him some questions regarding his awareness about the disease. Here’s what he said:

Me: How old were you when I got breast cancer?
Danny: 3 or 4

Me: How old was I when I got breast cancer?
Danny: 30 something

Me: How did you feel when I got breast cancer?
Danny: I don’t remember anything that happened.

Me: What do you know about my breast cancer from what others have told you?
Danny: That it was a lump, that you had to cut all of your hair off because it was coming out in clumps, that Joey cut off your hair when it happened.

Me: When I say the words breast cancer, what do you immediately think?
Danny: That it happened to you.

Me: What is breast cancer?
Danny: Cancer that’s on your breast.

Me: Do you know anyone else who has had it?
Danny: Nope. I mean, I’ve heard you tell me, but I don’t know them specifically.

Me: What do you think people should know about breast cancer?
Danny: That you should go to the doctor every couple of weeks to see if you have it.

Me: Do you know what happens when I go see doctors?
Danny: You go into an MRI tube.

Me: What would you say to other kids whose moms have breast cancer?
Danny: I feel bad for you.

Me: Does breast cancer scare you?
Danny: Not really.

Me: Any final words you want to say about breast cancer?
Danny: I didn’t really know anything about it when it happened. You just told me.

Come back tomorrow for Joey’s answers to the same questions.

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NBC’s ‘Parenthood’ Braves Breast Cancer

Last night’s episode of “Parenthood” covered the bases of puppies, break-ups,  family schedules, a kid faking sickness to skip school — and breast cancer. The cancer bit didn’t consume the show; the bomb dropped at the end of the hour, but you can bet it will deliver major drama to character Kristina Braverman and clan.

Will the story unfold in an accurate manner? So far, in my opinion, the mammogram scene was pretty right-on (“slip in a little closer,” “slight pressure,” “deep breath,” “don’t move”), and the post-doctor-visit numbness Kristina exhibits is just how I remember it. There was no middle between mammogram and diagnosis, though, and for me, an ultrasound, a needle biopsy, and a whole lot of waiting followed the initial screening. I know, we’re talking TV here, and stories must develop rapidly; plus, who knows, maybe this is how it happens for some women.

I won’t be too picky about the beginnings of this storyline. I’ll just watch, take it all in, then determine just how real it is.

So, will you tune in to watch the “Parenthood” portrayal of cancer?

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Raw October

I have not been paying a whole lot of attention, but I am sure pink is starting to pop up everywhere. It is almost October, you know — the time for breast cancer awareness, which really is just code for pushing products in the name of a cure in order to make a few extra bucks. And I don’t mean the dollars that fund breast cancer research (because if you really zero in on the percentage that goes to the cause, you’ll find it’s usually very minimal); I mean the cash that ends up padding the pockets of the people who turn their products pink. (And yes, there are some folks who donate every single cent earned to charity; thank you, folks, for that.) You might think going pink for a month is not a huge deal; heck, you might even buy some ribbon gear because you genuinely like it. No worries. I, myself, have bought into the hype in the past; I’ve even helped push the pink. As the years go on (almost 8 of them), though, I realize that I’m not all that into Pinktober. I am a fan of awareness, however, and that’s why I’m devoted to the 31 days that are right around the corner. But instead of supporting pinkwashing, I’m going raw. During the month of October, I pledge to post every day some sort of

  • fact,
  • figure,
  • feeling, or
  • photograph

that is nothing but real. No pink, no puff, no fluff, just straight-up, awareness-raising cancer content. Something like that pile of pills (see right) that helped keep me alive for nearly 2 years.

Real. Raw. October. Join me, won’t you?

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Leslie Scored a Sleeve and Ditched Cancer

Leslie won the LympheDIVAs giveaway sleeve. Here, she shows off her new fashion (and function) statement and shares her breast cancer story.

I have been so fortunate and blessed in my cancer journey. My doctor received the “normal findings” of my annual mammogram, which was done in mid-May, with the notation that my tissue was dense. He called and said he would like for me to have an ultrasound done as an additional precaution. Early in June, I had the ultrasound and a small spot (4mm) showed up in my left breast. The radiologist recommended that although it was probably just a cyst, I should go ahead and have a core biopsy. This was done a week later, and 10 days postbiopsy, my doctor called to sadly inform me that I had stage 1 cancer. I was catching a plane to celebrate my father-in-law’s 95th birthday within a couple of hours after that call, so my husband and I decided that we would keep the news to ourselves for the long weekend while my doctor set up an appointment with one of our local surgeons for the following week. I must admit that I have felt from the beginning a sense of peace about this whole experience. I have never doubted that my Lord has been with me at all times, and I rest in His saving grace.

When I returned from our trip, I met with the local surgeon and told him that because my mom was a survivor of cancer in both breasts, I wanted to go ahead and have a double mastectomy. He agreed and was to process the schedule with the reconstruction plastic surgeon. In the meantime, I made an appointment for a second consultation with MD Anderson in Orlando. I met with both the oncologist and then the surgeon, and both physicians felt that I was being extremely aggressive in my decision for a double mastectomy based on the results of the biopsy and felt a lumpectomy was the appropriate course of treatment with radiation. But they would do whatever I decided. After researching the statistics and talking to my family, I decided to go with the breast conservation and had a lumpectomy done on August 2. Ironically, the lab reports that came back from that surgery, which included the sentinel lymph node, indicated that ALL the cancer had been removed by the initial core biopsy done in June, and there was no finding of any cancer in the site or at the lymph node!

I am now undergoing 16 days of radiation and will meet again with the oncologist to discuss hormone therapy. Through all of this, I have had minimal pain or discomfort and the only inconvenience is driving 50 miles to and from Orlando for my doctor visits and radiation treatments—no complaints on my end! So many wonderful people have been such a support to me—what a blessing. I have met numerous courageous women dealing with their cancer, been encouraged by an unbelievable number of breast cancer survivors, and have become an advocate for educating and encouraging women in my daily walk to be sure to get their annual mammograms, and if the findings are dense tissue, to seek additional screening such as the ultrasound. Had I waited another year for my next mammogram, who knows how large the tumor would have grown or how far it could have spread. Thanks to my doctor’s foresight, my cancer was caught so early that my prognosis is excellent.

During this journey, I had the pleasure of getting together with one of our business clients. My husband had told her what was going on and she told us all about her cousin Jacki Donaldson and her exceptional cancer journey. As it turned out, I was given a LympheDIVAs sleeve that my friend had won in a contest.  When my girlfriend (who is an OT and is trained in lymphedema therapy) was measuring me for the LympheDivas sleeve, I showed her the design I had picked out. She wondered why I was going with the lacy look that will stand out instead of a neutral skin tone color. I told her I want people to notice and hopefully ask about it so I can promote LympheDIVAs and give the elevator version of my  experience and how important it is for women to be informed and know about dense breast tissue.

Thank you for detailing your story, Leslie; I hope you get to tell it over and over again because it will make a difference.

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Covering the Bases

“I am not worried about malignancy,” my GI doctor told me this morning during our discussion about what may be wrong with my gut. Still, given my cancer history, and in order to cover all the bases, she has ordered a colonoscopy. This means that for an entire day, I can consume only clear liquids and clear foods—which, I assume, means jello only, because are there really any other see-through foods? Then, I get to drink a special potion that will put me on the potty for much of the day. The next day, I’ll get knocked out so my doc can examine my colon through a tube of some sort. Lovely.

I am not really looking forward to having a colonoscopy at age 42 (so much earlier than the test is typically prescribed for preventative purposes). I am, however, hopeful that the test will reveal a healthy colon.

Not worried about malignancy.

Just covering the bases.

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Cancer Is Not My Main Worry

There’s a little, teeny, tiny piece of me questioning whether cancer might once again live in my body. The question stems from a year’s worth of undiagnosed tummy trouble manifesting itself sometimes in simple discomfort and other times in downright pain. Some days, my stomach is tight as a drum, pushed out so far I think it’s going to pop. Other times, I feel bloated, full, and cramped. It’s all so unpredictable, and I have yet to pinpoint anything specific that is twisting up my insides. Doctors have not found any real answers, either. They did diagnose pelvic floor dysfunction, but apparently, the gut issues are a separate beast. The good news is that a battery of tests have revealed that my esophagus, cardia, pancreas, gall bladder, and a few other organs are in fine shape. That brings me peace. Really, it does. But I kinda wish the professionals could spot something, anything that might help me fix what ails me. One doc thought maybe chemo drugs were to blame, but another said it’s unlikely — if chemo drugs were to muck up my system, it would have happened at the time of treatment, not almost 8 years later.

Tomorrow, I meet with my GI specialist for a round-up discussion about all of my normal test results and about what the next step will be. I fear there will be no next step, that I will just live in this state of blah, eating only minimally because it’s the only thing that makes me feel better but is surely not a healthy remedy.

Cancer is not my main worry — it’s just that I’ll never totally excuse its possibility since it’s happened to me once already. Not knowing what’s wrong is my No. 1 concern.

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23 Best Breast Cancer Blogs of 2012

Thank you for this honor, healthline.com:

Cancer Blog is full of thoughtful comments about life with a dark passenger: breast cancer. Jacki has recovered from the physical blight of her cancer, but it is clear in her powerful posts that once it has made an entrance, life is never the same. She has a singular take on the aftermath of this illness, and her photographs and pithy reflections put everything in perspective.

My Breast Cancer Blog speaks of one woman’s daily life, but after a few minutes of browsing, readers will discover that Jacki’s experiences are those of survivors everywhere. Thanks for putting words to them!

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The Beauty of Every Breath

I submitted this piece for publication on a blog featuring positive-outlook stories. The editors there wanted a more developed finished product. This is too rapid-fire, they shared, and apparently, it doesn’t allow the reader to fully absorb the content. I like it as is, though, so I am publishing it here instead of elsewhere.

I was diagnosed with cancer at the age of 34. I was a married mom of two little boys—3 years old and 18 months at the time my fingers slid across a hard, pea-sized lump in my left breast during a morning shower—and at the time, I was pretty sure my days were numbered. I was most certain of this at night when I watched my babies sleep and tried to breathe away the crushing anxiety that filled my chest. Nighttime led me to create a turnover document for my husband—you know, the kind you’d leave for the person taking over your job. Instead of explaining a workplace filing system or a list of key company people, I jotted down the names of the schools our children would attend, the best places to buy shoes for growing feet, the times at which to schedule doctor check-ups. I was prepared to leave my family, and I wanted everything in place before I departed.

It’s been eight years since that November day when a doctor told me over the phone, “Unfortunately, cancer cells were found” and my medical madness began. There’s been surgery, chemotherapy, radiation, more drug therapy, physical therapy, antidepressant therapy, two hospitalizations, one blood transfusion, side effects, and more. I’ve been bald, bloated, and bitchy over the whole ordeal, but mostly, I’ve been inspired and maybe even a little thankful cancer crashed into my world (I know, gasp!) because without the disease, I might have just plodded along through life not really appreciating the beauty of every breath.

My anxiety started turning to calm the day a mommy friend anonymously left a bundle of spirit-lifting books on my front porch. This gift was followed by comfy socks in my mailbox; brownies sent from across the country; meals delivered to my doorstep; a quilt lovingly crafted and autographed by friends; and a whole string of presents, flowers, cards, emails, visits, and phone calls too numerous to list.

Cancer has given me more than overwhelming love from others. It gave me better hair; less stress; friendships with all sorts of cancer warriors; a writing and editing career (it all started with my ramblings on my Breast Cancer blog); a ninja-like ability to navigate the medical system for every ache, pain, itch, or twinge; a true admiration for life-saving doctors, the ability to push my body to new limits (I never thought I could run a half-marathon, but a few years ago, I did); and a relationship with my kids (now 11 and 9) that while sometimes characterized by chaos and conflict, is mostly beautiful. The beauty sinks in at night, when I watch them sleep and realize the anxiety is gone, and the turnover document has no place in our lives.

Some may think I’m wacky, thinking of cancer as a gift, and I admit, if it comes back, I am certain I will change my tune. For now, though, having survived for much longer than I’d anticipated, I’m thankful.

That’s all.

Just thankful.

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Guilty of Overshare

I am pretty sure I overshare.

An oversharer, from what I gather from a variety of sources, is someone who divulges more information than is necessary. The info-share is usually marked by intimate, gross, and disgusting life details, typically broadcast in writing where anyone can see them—you know, like on Facebook, Twitter, and blogs.

I tend to blurt out my personal details, which most always have a medical undertone, because (a) I think that what I publish can help others (case in point: this blog, where hundreds of people visit each day for information about breast cancer and a reminder that people, like me, do survive the disease, even after harrowing experiences) and (b) I know that what I publish helps me (case in point: this blog, where, over the span of almost eight years, bunches of well-wishers have lifted my spirits and led me to resources for better living.

Oversharing is probably expected on a breast cancer blog, where details and graphic photos (like the one of my boobs all marked up and ready for radiation) are key for raising awareness. Lately, though, my tendency to overshare has funneled over to Facebook. Here’s what I wrote today:

For those who love a good medical update — A dose of propofol (yes, the Michael Jackson drug), a tube and camera down the throat, a biopsy of a few parts, a groggy wake-up, and now I’m home. Findings are as follows: gastritis, duodenitis, hiatus hernia, and some iffy mucous in pancreas. Next up: MRI to investigate pancreas thing + a follow-up with doc to determine course of action. The good news is that my esophagus and cardia (the opening that connects the esophagus and the upper part of the stomach) are normal. Well, that’s good, right?

Some people would never dream of such a share. I’m an open book though, so it doesn’t phase me to tell you that I suffered a miscarriage 12 years ago, that I vaginally delivered two bigger-than-10-pound babies (reason for some current pelvic issues), or that my tummy (which was “tucked” to remove excess pregnancy skin) is so troubled that I ended up with an endoscopy today, and I am a little worried about what might come back in the pathology report.

Oversharing is just part of who I am. And I hope that one day, maybe, what I so freely spout out helps you, or helps me, and if you hate that I tell you everything you never wanted to know, just steer clear of this blog and my Facebook page, and you’ll stay happily in the dark.

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$3 to Save the Boobies, Score a Button

Teather Sanders wants to help save second base, but she needs a little help. I could tell you all about her hopes, dreams, and entrepreneurial spirit, but I’ll let her do that. Take a peek at the cute and clever video featured below, then read the story behind her desire to make a difference. (In a nutshell, a donation of $3 helps Teather reach a goal and gets you a boobie button of your choice.)

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LympheDIVAs Compression Sleeve (GIVEAWAY)

I have a compression sleeve. I just don’t wear it much—mostly because I’m not at high risk for developing lymphedema, but also, I think, because the thing is sorta scratchy, and it pretty much blends into the corner of my closet withs its flesh-colored boring-ness, and, so, I usually forget to wear it when I mow the lawn (which, to be honest, is rarely) or when I travel by plane (which I hardly ever do). I’ve got to tell you, though—I’m pretty sure times are gonna change.

I just received a new fancy, schmancy sleeve from LympheDIVAs—a small, family-run company that provides fashionable, medically correct compression garments for upper extremity lymphedema. Lymphedema in breast cancer patients is manifest as swelling that can occur when a sentinel node or a number of lymph nodes are removed or when the nodes receive radiation therapy. Having a sleeve on hand is key—it’s one of the tried and true therapies for lymphedema. Now that I have my newbie, I’m thinking it might become more fashion accessory than cancer-surviving burden.

There’s a great story behind LympheDIVAs: The company was founded in 2006 by three inspirational women, two of whom had lymphedema themselves. One of these women—Rachel Levin Troxell—pushed that hot, thick, itchy, beige compression garment option into the shadows by launching some comfortable, breathable, aloe-vera infused, and fashionable arm candy. Seriously, isn’t my arm beautiful?

Sadly, Rachel passed away in 2008, but her creation lives on, thanks to her dad and brother, who are working to fulfill Rachel’s mission to bring lymphedema awareness to the breast cancer community and beyond. Thanks also to Anna, the designer of all the beauty—the same Anna who is GIVING AWAY one sleeve and one gauntlet to one lucky reader.

Ready, set, enter to win:

  • Browse the LympheDIVAs online shop and pick out your favorite pattern; leave a comment naming your fave.
  • Leave your comment no later than 5:00 p.m. EST on Thursday, July 26, 2012.
  • You may enter only once.
  • Open to legal residents of the 50 United States and the District of Columbia, who are 18 and older.
  • One winner will be selected in a random drawing via random.org.
  • One winner will receive one sleeve and one gauntlet in the pattern of her choice. Gift valued at $153.
  • Winners will be notified by email, so make sure to check next week to find out if you’ve won!

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Grace Under Pressure

I’m tempted to use this space to moan and groan about a recent medical condition—not cancer and likely curable—that has me feeling pretty bummed. But I can’t bring myself to publicly mope because I am not very sick, really, and when I think about it, never have I been really sick. Not when I think about my new faraway friend Lauren, who blogged today about true sickness. Lauren, a breast cancer survivor, is battling leukemia, and the fight is really taking a toll on her body. She is sick.

I once thought I was sick. That time chemo kicked the crap out of me and left me all dizzy and light-headed and almost incoherent, with low blood counts and the need for hospitalization (twice), a blood transfusion, and some growth-hormone-type injections—yea, that was pretty convincing. But considering what Lauren is enduring, that wasn’t sick.

I had jury duty recently, and an attorney asked me to define “grace under pressure.” I told him, “it means maintaining a sense of calm in the midst of a difficult situation.” What I wanted to tell him is, “Lauren.”

Lauren is grace under pressure. If you read her story, I think you’ll agree, and I’m pretty sure you’ll be inspired to live strong, in sickness and in health.

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Cancer Is Relevant

"Relevancy" — Jason Arnold — http://redbyrd.tumblr.com/

Says the artist about his iPad sketch, “Relevancy” is about how words are taken for granted until something urgent happens.

For me, cancer was just a word — until it crashed into my world. Now, the word has relevance in everything I do.

What word have you taken for granted that now has relevance?

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Eight Birthdays After Cancer

I remember prom like it was yesterday (I think my date probably remembers, too, considering the display of my way-too-big boobs in that white strapless dress), and now, somehow, today is birthday No. 42. Gosh, the time has just disappeared. So have the big boobs, which were reduced in 1996. Funny things, those boobs. They tried to kill me. That was back in 2004. Now, it’s 2012. Eight birthdays since cancer. I love that.

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