Raw October — Day 28 (My Survivor Reminder)

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

My niece Jordan is my survivor reminder — she was born in October 2004; I was diagnosed with breast cancer in November 2004. Every time she turns another year older, I tack on another year of survival. She just turned 8 — that means I am about to celebrate 8.

Jordan’s age is not the only cancer connection she and I share. We also have memories (well, I do; she doesn’t) of infusion-room bonding. Jordan was 6 weeks old when I started chemo, and she sat with my mom and me every time toxic drugs dripped through my veins. My recollections of sickness and despair are tempered by the vision of that sweet, new baby in my mom’s arms — the baby who now has beautiful long hair; perfect freckles; a mean volleyball serve; and a huge hug to share whenever she sees me.

Thanks for being my survivor reminder, Jordan. I love you!

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Raw October — Day 25 (Cancer Talk Coming Up)

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

On January 4, 2013, I will talk about cancer — not that I don’t spout out about it all the time as it is, but I will officially discuss the disease that is now 8 years behind me when I join my favorite oncologist at Shands Hospital for an interview session with prospective med students. My doc will highlight how the school/hospital operates from a patient-centered perspective, I will share my patient story, and the students will get to ask me questions. In all, I will give about 2 hours of my time. I know I will enjoy every minute of it.

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Raw October — Day 24 (Recurrence Will Not Happen)

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

What a difference a year can make. Last November, I nearly lost my mind after a bogus MRI revealed a possible malignancy. Yesterday, I learned that I pretty much have a zero chance of breast cancer recurrence.

My doctor says she knows this because of my type of disease — my tumor was ER/PR negative and HER2 positive, which happens to be aggressive, but only for the first 5 years. After 5 years (I’m at almost 8 years), there’s pretty much no risk of recurrence either locally or to distant organs. That’s not to say another cancer won’t ever pop up, but the one I had should not ever, ever, ever return. I will not, therefore, be a woman who says 20 years down the road that her cancer came back.

I should find great peace and comfort in this news, said my doctor. I do, I assured her. I really, really, really do, and while I kept my composure in her office as this gift of information swirled in my brain, tears fill eyes as I adjust to my newfound relief.

More good news — no more annual MRI. It’s not the standard of care for someone with my risk, and that makes it just not necessary. No more annual blood draw, either. It’s also not the standard of care, and the results tell my doctor nothing about my cancer-related health. My future line-up, then, is one annual follow-up with this doctor (she’s my medical oncologist), one annual follow-up with my radiation oncologist, and one annual mammogram.

Sounds good to me.

All of it.

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Raw October — Day 20 (Radiation Round-Up)

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

Another year, another radiation follow-up appointment. Yesterday’s check-up went well, and my doctor sent me home with a clean bill of health.
She and I didn’t even discuss breast health too much, actually — our discussion was mostly focused on my tummy troubles, which still have not been fully diagnosed (maybe my November 8 colonoscopy will deliver some answers). Our chat was a good one, and I walked away once again thinking that perhaps chemo is to blame for my aches, pains, bloating, tightness, and pressure. My GI specialist suggested this months back, a colorectal doc disagreed, and now, my radiation oncologist says I should not underestimate the power of chemo to do damage. No underestimating here; I truly believe anything strong enough to kill cancer while simultaneously stealing my hair and wiping out my white blood cell count can surely muck up my insides, even 8 years post-cancer. The question is: Is chemo the definite culprit, or is it something else? I’m not sure I’ll ever know. Something tells me I may need to be OK with that.

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Raw October — Day 18 (It Could Be Worse)

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

I wrote the following post in August 2008. At the time, I had survived cancer for a little longer than 3 years.

Joey’s new mantra: It could be worse. He uses it to excuse his questionable behavior — like when he was playing at the dinner table recently, waving his arms all around like we tell him not to do, and he knocked over his cup of milk. “It could be worse,” he announced after locking eyes with my frustrated gaze. Not exactly my preferred response — “I’m sorry, mom, I know I shouldn’t have been horsing around, and it won’t happen again” would have been my pick—but hey, the kid is 7. How much can I expect, really? Besides, he’s right. It could be worse.

Sometimes Joey is wise beyond his years. The kid always gives me something to think about. Once Joey told his dad about the grandfather he never knew (he died before Joey was even born): “Don’t worry that your dad can’t see you anymore. He’s in the sky now and the clouds are his eyes.” He told me 3 years ago that cancer is “medicine and love.” Pretty good way to sum it up — I got lots of medicine and lots of love. I’m not sure in hindsight that I’d describe it much differently.

It could be worse. I keep thinking about this and realizing Joey is right on with this perspective.

Back to cancer.

I found a lump — early. It could have been worse. It could have spread. It could have been larger.

I had a lumpectomy. It could have been worse. I could have had a mastectomy.

I had chemo, and it made me sick. It could have been worse. My cancer could have been so bad chemo wouldn’t have worked.

I was hospitalized twice during treatment. It could have been worse. I could have been hospitalized three, four, five times.

I had radiation, and my skin burned slightly. It could have been worse. My skin could have been left sizzled and scorched. I could have been in pain. I wasn’t.

I had more drug therapy. It could have been worse. I could have been a non-candidate for the treatment (Herceptin), which could be the very thing saving my life.

I went to counseling for more than 1 year and took an anti-depressant, too. It could have been worse. I could have denied these forms of help and could be battling depression and anxiety at this very moment. I’m not. I’m happy.

I could go on and on, but I think you get my drift. I hope you get how this applies to your life, too. Try this next time you’re down in the dumps — tell yourself: It could be worse. See if it makes a difference. It does for me. And Joey, too.

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Raw October — Day 16 (Tips From Survivors)

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

No one gives better breast cancer advice than survivors. Keep reading, and you’ll see what I mean.

Katie: Get “wigged” out — find a wig that matches your personality and have fun with it! There’s no other time in our lives when we can have a blonde pixie do one day and long flowing brown hair the next.

Kimberlee: Always take someone who is emotionally strong with you to your first few appointments. You will be inundated with information and will most likely be too overwhelmed to remember everything. Taking someone with you who can jot down pertinent information, while remaining a shoulder for you to lean on, will be extremely helpful.

Me: If you need chemo, get a port — this prevents multiple needle sticks in arms and hands — and purchase a numbing cream for the skin on top of the port, unless, of course, you have a high tolerance for pain, which I do not.

Sue: Ha! I got the numbing cream too! My advice . . . if you’re not confident in your doctor or have hesitation, switch doctors. I stayed with my first onc for 4 months. After chemo and some iffy blood work, she believed the cancer came back. We got a second opinion and saw an onc who ordered the biopsy needed. It came back negative. My first onc was ready to have me do six more months of chemo. Guess which Dr. I still see, 8 years later?

Tracy: Let people help you. Give them the direction and approval to do so. Friends and family need it as do you.

Lisa: Wish I’d known about numbing cream — those port insertions hurt, and the regular nurse didn’t understand why I didn’t want to draw my counts from the port but use my arm instead! I usually drink lots of water but couldn’t because of the taste in my mouth — crystal light lemonade cut through the bad taste and helped me!

Amy: I’ve learned that everyone is different even if you have nearly identical diagnoses, so try not to compare treatment plans and try not to worry if something that worked for someone else doesn’t work for you. And drink a ton of water on the day of chemo before it starts to taste nasty!

Tina: Even though your world has just been turned upside down, nothing seems to make sense, and you feel like your world has just become filled with nothing but Dr. appts. with many different doctors, hospitals, surgeries, procedures, chemo, radiation, etc., etc. and life seems like it will never be the same, it does get better. I know it took me about 2-3 years after I was diagnosed to just feel like ME again. I was terrified I would never feel like me again, but I do. I have a new appreciation for the little things in life, and I don’t take anything for granted anymore. It made me a stronger person.

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Raw October — Day 15 (Not for the Squeamish)

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

There is nothing pretty about breast cancer, and CancerVacation blogger Julia Grim captures the disease in its raw form (click on this link, then Photos & Reports, then Photos). Her photos are not for the squeamish; they are for anyone who wants a peek at the realities — surgery, chemo, hair loss, weight gain — that cannot be tied up all pretty with a pink ribbon.

Here are the photos: http://www.cancervacation.com/home.html

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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 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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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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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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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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