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.

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.

Raw October — Day 23 (How it All Started)

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

National Breast Cancer Awareness Month (NBCAM) was started in 1985 by the American Cancer Society with funds from a chemical company and a drug company for the purpose of filling an information gap and empowering women to take charge of their breast health. The Breast Cancer Consortium details the almost 30-year evolution of NBCAM and highlights a few of the criticisms that surround the awareness campaign. Here’s the rundown — RIGHT HERE.

Now, vote in the poll below and share your thoughts on NBCAM — is it a worthy cause or a whole bunch of pink nothing? Take your pick, then share a comment to explain your position.

Raw October — Day 22 (Body Check Journal)

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

http://bodycheckjournal.com/

A friend of mine with a chronically ill child dreamed up the Body Check Journal™, she’s been working tirelessly to bring her vision to life, and now, her creation has launched. Congrats, Dawn!

According to the Body Check crew, this journal “is a simple, easy-to-use communication tool that helps you easily track subtle changes in your child’s body. Armed with consistently tracked data, you are powerfully positioned to work in partnership with medical professionals to indentify and address atypical health issues. The sooner you can understand what is truly happening in your child’s body, the sooner you can address concerns and restore you child to optimal wellness.”

Awesome, huh? And guess what? In January, an adult version of the journal will be available, and that means tracking your own health from breast cancer diagnosis through survival will be so much easier.

Take a tour of the Body Check Journal™ website, which includes a shop, a blog, testimonials, how-to tips, and a space to share your story. See if this tracking tool is up your alley. I’m betting it can only make life easier.

Raw October — Day 21 (Hair By Chemotherapy)

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

Warning: Chemotherapy can change the color and texture of your hair; meaning, the hair you lose will likely not be the same hair you get back. The proof is in the photo — I lost my straight, blond locks and gained a dark, curly mop.

The hair transformation is not always a forever thing, though, because my dark is not so dark anymore, and my curls are not so curly anymore. With each passing day (there have been about 2,920 of them), I look more and more like my old self.

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.

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.

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.

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

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

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.

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.

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

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.

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.