Raw October — Day 12 (Flashback to 2005)

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

I wrote the following post in October 2005. At the time, I was in the midst of breast cancer treatment.

On Saturday, my mom and I attended a half-day seminar on the topic of breast cancer. It was sponsored by Shands Hospital, and many of the speakers were my own medical people — a surgeon who took my blood prior to my lumpectomy for research purposes, an oncologist who treated me both times I was hospitalized during my first chemo regimen, my physical therapist, and the woman who coordinated my initial care when I was first diagnosed. I already knew a lot about what they talked about, but I learned that there is a lot on the horizon for breast cancer detection and treatment — like new radiation techniques that can limit the treatment time from seven weeks to just one week and methods for detecting the smallest trace of breast cancer before it begins to grow. My physical therapist is studying cancer-related fatigue (I think I have it!) and how to manage it. It amazes me that these medical professionals are spending their work days seeking cures and miracles. What a huge responsibility. What a noble cause. I am lucky to be in their care.

But after hearing about all the science and hope and possibilities, I am reminded mostly of one loud and clear message I heard on this day. The oncologist spoke about the components of breast cancer tumors — there are about six criteria that are taken into consideration when studying a tumor, such as age, stage, grade, lymph node status, hormone receptivity, and HER-2 status. My criteria are: age 34 at diagnosis, stage 1 (out of 4), grade 2 (out of 3), lymph node negative, ER/PR negative, and HER-2 positive. Some of this is good; some not so good — this balance has left me feeling OK about my personal situation. But the oncologist said, “even a good tumor in a young women is a bad tumor.”

I guess I knew this. My age is what qualified me for aggressive treatment — because young women have the most aggressive tumors. But to hear it spoken in a formal teaching setting and in somewhat of a grim tone, is troubling. But I’m OK. I’m not wounded by this bit of information, and I’m not anxious like I once would be. I still feel like I am winning my battle, so I can take this in stride. And if cancer comes back to me one day, I’ll just keep fighting — like this young woman who is quoted in the book “Hope Lives: The After Breast Cancer Treatment Survival Handbook“:

Why do I keep going through treatment when there is no permanent cure? I ask myself this every time. There are no options other than death, which to me is no option. It’s not that I fear death. I really don’t anymore. I just love life too much to quit. It’s a race against time. Treatment buys me time until they come up with new drugs or new ways to treat this illness. I’m not quitting.

—Robin, age 38, diagnosed 1996, 1998, 1999

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Raw October — Day 11 (Happy to Say I’m Surviving)

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

The other day, 11-year-old Joey asked me, “Mom, are you so happy when you say that you have survived cancer?” I told him I am so happy when I get to say that, although I usually say I’m surviving cancer, not that I’ve survived it because to have survived would imply there is a cure for cancer, and, sadly, there is not. Still, to be a surviving the disease is a pretty great feeling.

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Raw October — Day 10 (Four Subgroups of Breast Cancer)

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

I have a friend who is a cancer researcher, and I must admit, he is pretty much a superhero in my book. I mean, he spends his days and nights (when not wrangling three little kids) trying to cure a horrible disease — I am totally in awe of that. I am also in awe of the researchers who recently discovered that there are four molecular subgroups of breast cancer, each group with its own biology and survival outlooks, which has resulted in a new and unprecedented peek into breast cancer.

The study of samples from 825 breast cancer patients has led to the identification of the following subtypes of breast cancer: HER2-enriched (HER2E), Luminal A (LumA), Luminal B (LumB), and Basal-like. The implications of uncovering these groups are huge — it has been determined, for example, that the Basal-like group (also known as triple negative breast cancer) shares genomic similarities with serous ovarian cancer; now, researchers can compare treatments across these two cancers. Also, it seems that half of HER2-positive cancers belong to the HER2E subtype; the other half belong to Luminal subtypes — now we know that there are at least two types of HER2-positive tumors; as a HER2-positive girl, I wonder which group is mine and what meaning this has for my survival.

There is so much more to this study, and I can’t possibly do justice to fully explaining it, but I can point you in the direction of a press release on the National Cancer Institute website, where you will likely find yourself in awe of what superstars like my friend are doing with their days and nights.

Awe.

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Raw October — Day 9 (A Million New Cases)

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

Wrap your head around this:

“According to the World Health Organization, there are approximately 1.3 million new cases of breast cancer and 450,000 deaths worldwide annually. Breast cancer is the most common cancer among women. The majority of cases are sporadic, meaning there is not a family history of breast cancer, as opposed to genetic, where genes predispose a person to the disease. Men can also develop breast cancer, but it accounts for less than 1 percent of breast cancer cases.”

National Cancer Institute. (2012). Study reveals genomic similarities between breast and ovarian cancers [Press release]. Retrieved from http://www.cancer.gov/newscenter/newsfromnci/2012/TCGAbreast

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Raw October — Day 8 (Magic of Music)

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

This boy was 3 years old when I was diagnosed. He shaved my head; told me my bald head, cap, hospital mask, and IV pole made me look like an alien; and revealed just recently that he has no real memory of breast cancer. This boy is now 11 years old, and I am so very thankful that I am alive to witness the magic of his music.

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Raw October — Day 7 (There Is Always Hope)

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

 . . . there are two ways of looking at cancer statistics: Is it a 95 percent chance they will die, or a 5 percent chance they will survive? We like to look at that 5 percent—because 5 percent is not zero. So I think there is always hope.

Dr. Shane Dormady, medical oncologist at the El Camino Hospital Cancer Center in Mountain View, California, said that in his “Talking About Cancer Treatment in 2012” interview.

5 percent is not zero.

I love that.

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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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