The Whole You: Lessons Learned After Moving from Nurse to Patient

Best-selling author Hollye Jacobs, RN, MS, MSW, blogs about three lessons she learned after she was diagnosed with breast cancer. Join us for our Annual Fall Conference, part of Wellness Weekend in Denver, CO this September 18-20 to meet Ms. Jacobs, to hear her speak and get a free copy of The Silver Lining Companion Guide in your conference goodie bag at registration for the event. 

As a healthy, happy, vegan-eating, marathon-running, 39-year-old young mother with absolutely no family history of breast cancer, being diagnosed with the disease in 2010 literally shattered my world. As a health care professional, I very quickly moved from the side of the hospital bed into the hospital bed.  This transition from nurse to patient taught me profound life lessons.

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Lesson #1: Honor the feelings and let them out.

Prior to my experience with breast cancer, I was a grin-and-bear it kind of girl who was reluctant to share any feeling other than joy. However, once ‘Roid Rage (the intense feelings of anger brought on by pre-chemotherapy steroids) and Chemo-Sobby (tears at the drop of a hat brought on by the chemotherapy flowing through my veins), and the Freight Train of Fatigue (courtesy of the rads of radiation beamed into my body) entered my life, I had no choice but to let all of my feelings out. I was too exhausted to muster the energy to make them look “pretty.” And you know what? Expressing feelings, all feelings, happens to feel good. Really good. Though I no longer have ‘Roid Rage, Chemo-Sobby or the Freight Train of Fatigue (thank goodness!), I continue to openly express my feelings. And it still feels good! No, actually, it feels great! Continue reading

The Whole You: Is it Hot in Here?

Getting good breast cancer care means caring for yourself as a whole person—understanding how cancer impacts you physically, emotionally and spiritually. This is why we’re hosting Wellness Weekend, a three-day event that combines our annual fall conference, Breast Cancer Today: Individual Treatments, Shared Experiences, and Yoga on the Steps: Denver. In anticipation of the Denver, Colorado weekend, Randi Rentz kicks off our blogging series, The Whole You, with a post about a side effect that impacts a number women of who undergo hormonal therapy for hormone-positive breast cancer – menopause.

Randi Rentz new headshot

Ah, summertime. Long, sunny days. Outdoor cookouts. Lounging by the pool.

Say what??? Make that: Long, sweaty days. Internal cook-offs. Lunging for the pool.

Summer can be difficult if you’re in the midst of perimenopause or menopause. Geez! I first experienced menopausal experiences while receiving chemo. It got worse once I went on  tamoxifen. I also had to have a hysterectomy, which totally threw me for a loop. That procedure, of course, put me in permanent SCREAMING and KICKING menopause.

For those of you who have experienced menopause – naturally occurring or induced by cancer treatment – you know exactly what I mean when I say that hot flashes absolutely STINK!! Not only do they rock your world in a moment’s notice with absolutely no warning, but they (at least mine) are all consuming and utterly UNCOMFORTABLE! Well, let me be more specific: the truth of the matter is that my mind is a wasteland of emptiness during which I am at a complete and total loss of words when a hot flash comes on. They so overwhelm me.

Irritability, mood swings, sudden burst of crying. They’re all part of this new phase in my life. I am now menopause symptomatic (a.k.a. Itchy, Bitchy, Sweaty, Sleepy, Bloated, Forgetful and Psycho).

The number one symptom for me: hot flashes, cold flashes and night sweats. Now, these aren’t the sweats of relaxation you’d feel in a sauna, or the rewarding ones indicating you’ve just exercised This is more like: OMG, I’m on F%$#ing fire.  Call 9-1-1….Nooow! Continue reading

A Refreshing, Calm Morning with a Community of Support

Marcia Pinkstaff blogs about her experience with breast cancer, Yoga on the Steps and the importance of community.

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Almost 3 years ago, my life changed forever when I heard those awful words, “You have stage III invasive ductal carcinoma breast cancer.” Breast cancer? Stage III? How is that even possible? Those are the immediate thoughts that raced through my mind. Will I survive? What will life be like after?

I’m excited to tell you that in addition to advances in research and care, which have made early-stage breast cancer, mostly curable, there are also many exceptional programs to help you get your life back after diagnosis. Living Beyond Breast Cancer offers many of these programs including webinars, seminars, a conference, and my personal favorite Yoga on the Steps. LBBC has an amazing team that wants to help you navigate life after diagnosis.

Many organizations raise money for treatments and to deal with the health aspect, but there are so many additional challenges that a survivor must face including financial and mental health issues. The stress of having cancer and what’s to come can overtake you if you let it. LBBC is here to help you face these outlying issues and treat the whole person, mind and body.

I attended my first Yoga on the Steps in Denver, about a year after my diagnosis. At that time, I had finished chemo, a double mastectomy and radiation. I also had the opportunity to share my story, which can also be therapeutic, or at least it was for me. At that point, I still looked like a survivor and didn’t feel like myself, but participating in an event with such a wonderful group of people as the sun comes up is not only refreshing and calming, but a fun way to start your day.

I hope that you will join us for Yoga on the Steps in Kansas City and/or Denver. I would love to meet you and hear your story. And if you’re new to yoga or LBBC, I’d love for you to join us for this inspiring outdoor event. Yoga is a great way to not just help you physically deal with some of the new obstacles through stretching and even just getting some exercise, but also helps to relax you…something that is just as important.

Someone asked me the other day if cancer defines me. I thought it was an odd question. I responded “no.” Cancer doesn’t define me. It’s a part of who I am now and has changed me, but I get to decide what defines me. Cancer is just one of the many things that have shaped my life. You never know if and when you might here those words, “you have cancer”, and I hope you don’t. If you ever do, you will be appreciative of organizations like LBBC and the sense of community that they bring.

Cancer is a lonely disease. Surrounding yourself with others who have been there gives you something that you can’t get from your friends and family who haven’t been there. No matter how much someone loves you and thinks they know what you’re going through, they cannot possibly understand. I love all of those who tried, but I know even with family members who had cancer, I never fully comprehended what the journey was like until I lived it. Please join me in supporting this wonderful organization that gives so much back to the community.

Marcia Pinkstaff is an independent representative and star leader at Silpada Designs Jewelry and a stage III breast cancer survivor.

The 411 on Inflammatory Breast Cancer

LBBC’s Christina Meehan shares information and resources about inflammatory breast cancer and writes about attending Jefferson University Hospitals’ Inflammatory Breast Cancer Conference for the Community.

Christina Meehan

I inherited my large breasts (DDDs) from my mother (Fs, I think), and she inherited them from her mother and so on. I didn’t “get” my breasts until my late 20s when they seemed to appear overnight. These days I’m a lopsided B-kinda-C cup. Unfortunately, a botched boob job isn’t to blame. Instead, I was diagnosed with the “Big C” in July 2013 at the age of 31. My lopsidedness comes from a mastectomy to remove my right breast and a breast reduction in my left breast. I thought I had a hard time finding bras when I had two DDD breasts; one breast and a prosthesis is even harder!

When I was diagnosed I thought two things: there is only one type of breast cancer and young women certainly don’t get it. I soon learned, however, that while I did, in fact, have breast cancer, I had a rare type of breast cancer called inflammatory breast cancer. I never heard of it; my mother, a nurse for 30 years never heard of it, and doctors can go through their entire careers without seeing a case. How can this be?

Last month I attended Jefferson University Hospitals’ inaugural Inflammatory Breast Cancer Conference for the Community. More than 80 people attended including other women with the disease and healthcare professionals. Based on information from the conference and my personal experience, here’s what I think you should know:

What is IBC?

IBC occurs when cancer cells block the lymphatic vessels in the skin covering the breast. Symptoms include:

  • The skin can become thick, red, itchy and dimpled like an orange (peau d’orange is the technical term).
  • The breast can appear swollen, bruised or darkened.
  • The breast may feel heavy or full, warm to the touch, painful or tender.
  • The nipple of the breast can also invert (push in) or appear flattened.

These symptoms also describe an infection of the breast called mastitis. Very often women who go to their doctor with these symptoms receive antibiotics, especially those who are pregnant or breastfeeding. Continue reading

The Turning Challenge

Hear My Voice Outreach volunteer Maggie Kudirka started #TheTurningChallenge to help raise research funds and awareness of resources for metastatic breast cancer.

One year ago, when I was 23 years old, I learned that I have metastatic breast cancer that has spread to my sternum, spine, and pelvis. Metastatic cancer is cancer that has spread from its original location to another body part.  It is sometimes called advanced cancer or stage 4 cancer.

I am among the 10% of women who are initially diagnosed with metastatic breast cancer. It was the last thing I expected.  Other than being female, I have none of the risk factors for breast cancer: I am very young, thin, physically active and fit. I have never used any hormonal medications; I don’t smoke, drink, or use drugs; I eat a healthy diet.  Genetic testing indicated I do not carry the breast cancer genes. But, I have metastatic breast cancer.

Metastasis is what makes breast cancer a deadly disease. It is the leading cause of death in young women with breast cancer. In fact, every day 108 American women die from metastatic breast cancer. This is over 40,000 women each year and this number has held steady for the last 15 years. If a cure is not found soon, one day it will be me.

Billions of dollars are raised for breast cancer, but only 2% goes toward research to find a cure for metastatic breast cancer.  Most of the money raised is spent on awareness, early detection, and treatments for early stages of breast cancer. Early detection does not guarantee a cure, and successfully treating early-stage breast cancer does not mean that one never has to worry about cancer again. Metastatic breast cancer can occur many years after the patient’s original diagnosis and treatment.

Until a cure is found for metastatic breast cancer, no one with breast cancer can ever be certain that they are cured, even after both breasts have been removed and no cancer is detected following surgery. Our current technology cannot detect whether very tiny breast cancer stem cells have traveled to a new body part. These cancer cells sometimes begin growing after surgery, radiation, and chemotherapy have been completed. In fact, this will happen to about 30% of the women who were successfully treated for early stages of breast cancer. Months, years, or even decades later, they will develop stage 4 breast cancer and die. It is a possibility that no one wants to talk about.  It is the elephant in every breast cancer patient’s room.

Please help raise awareness and funds for metastatic breast cancer research by joining me in the Turning Challenge.  Let’s send a message to breast cancer fundraising operations to turn around and look at us Stage 4 patients; we deserve more than 2 percent.

I started the Turning Challenge as part of my work as a Hear My Voice Outreach volunteer for Living Beyond Breast Cancer. I knew I wanted my outreach project to combine a fun activity with my passion for raising funds for metastatic breast cancer and educating people about the disease.

The Turning Challenge can be fun for everyone: both dancers and non-dancers.  All that you have to do is post a video of spinning or rotating in some fashion.  It can be as simple as the Hokie Pokie or as difficult as 32 fouettes. You can hold a spinning object like a pinwheel or film your pet dog chasing his tail.  There are no rules!

Inspire, entertain, amuse – or just make us smile! Be creative!

Please use  #TheTurningChallenge and nominate three or more friends.  If you prefer not to complete the challenge, please make a donation to METAvivor where 100% of your donation will go to metastatic breast cancer research. Also, visit LBBC.ORG to learn more about metastatic breast cancer and resources available to people living with the disease. Share this information with people living with stage IV breast cancer.

Help make this a Turning Point for metastatic breast cancer research and resources.

Good, Confident and Sexy: Becoming Whole Again

Breast cancer can impact sex, intimacy and body image whether you’re single or in a relationship. In anticipation of our Twitter Chat on Wednesday, June 24, AnaOno Intimates Owner Dana Donofree blogs about her experience regaining confidence and embracing her desirability after treatment.

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I often compare myself to a broken doll. Not the kind that was so beloved, it was carried everywhere, slowly fading and falling into disrepair over time as if it were aging gracefully. More like the kind that was once beautiful, but its owner decided to take construction paper scissors and hack its hair down to oddly shaped tufts, to accidentally (or on purpose) break off a limb or two, scar the midsection with a Sharpie and leave it half bent and mutilated in in the corner of her closet.

Because that’s what breast cancer did to me. It took a perfectly acceptable woman and turned her into a shadow of herself, and when it is all said and done, it made her feel broken, ruined and rejected.

When I was first diagnosed, what was about to happen to my outward appearance wasn’t even on my mind. I thought I had it all together, the strength, the attitude, the “let’s do this.”

See, I was never terribly attached to my breasts. I never even really thought about them all that much. I was 27. My boobs were small, but perky. They hadn’t done anything hero-worthy like nourish a child. Their biggest accomplishment was being able to exist without a bra. Their greatest time to shine was on weekend party nights when they could hang out in a super low-cut blouse and up my va va voom quotient.

So, when the time came to go our very separate ways, my friends threw a “Ta-Ta to Dana’s Ta-Tas” party and they had one last night out on the town in the lowest plunging neckline I could find.

I was pretty flippant and casual about parting with my two of my lady parts. Friends and family took bets on which of my surgeons, Dr. McDreamy and Dr. Hottie, was the better catch. I joked that they would be the last to ever cop a feel of my original breasts.

I thought I was going to be just fine afterward. That it wouldn’t faze me in the least.

But, I never could have prepared myself for what it felt like, both physically and mentally, when I woke from surgery. For something I felt I was completely comfortable with and ready for, losing them, my breasts, shook my world.

I took off the bandages, and saw this alien staring back at me in the mirror. I was mutilated. I was swollen. My scars were their own entity  purple and protruding like someone had chainsawed me up and stapled me back together.

It is not at all what I had imagined. Where was this “We are replacing your boobs with ones just like them so you can feel ‘normal’?” I hadn’t expected to look like a badly-repaired Lego. I expected to kinda come out looking more implanty-boob-job like. This body was the farthest cry from normal I could have ever imagined. Continue reading