Join MBCN in Taking Part in ITSABOUTTIMEMBC

September 28, 2016

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Metastatic breast cancer – cancer that travels from the breast and spreads to other parts of the body – is treatable, but not curable. Though exact statistics are unknown, an estimated 155,000 people are living with the disease in the United States.

Those with metastatic breast cancer face challenges different from those with early stage because metastatic breast cancer patients are always in treatment. They experience ongoing anxiety and fear knowing they will die one day from the disease.

 

For metastatic breast cancer patients it’s about time. Time to spend with their families, time to cross something off their bucket list, time to simply drive the carpool or cook a meal.

It’s also about time we increased awareness of the disease, time we developed more treatments to help metastatic patients live longer, time there was more recognition and support of those managing this disease.

As we approach Breast Cancer Awareness month,the Metastatic Breast Cancer Network (MBCN) is proud to be taking part in the It’s About Time campaign to raise awareness of metastatic breast cancer. What does time mean to you and your family? What would you do with more time? We invite you to visit the campaign website at www.itsabouttimeMBC.com and share your stories – or spread the word on social media using the hashtag #itsabouttimeMBC.

More than 30 organizations and 100 bloggers will be sharing their stories. Please join us! You can share your story AND take part in a special Facebook event on Oct. 13; National Metastatic Breast Cancer Awareness Day. Beginning at 8:13 a.m. Central time, and continuing at 13 minutes past the hour, for 13 hours, It’s About Time will be hosting a conversation at https://www.facebook.com/ItsAboutTimeMBC/. Every hour matters, we hope you will join us.

Blogger and MBCN board member Katherine O’Brien has shared her story here

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Stage IV Breast Cancer Resources for Spanish Speakers

September 5, 2016

 

The Metastatic Breast Cancer Network (MBCN) offers brochures in English and Spanish for people living with  Stage IV breast cancer. Special thanks to our friend Sandra Bishnoi and the Center for Language and Intercultural Communications and the students in SPAN322–Medical Professions, Rice University, Fall 2015, for preparing the Spanish versions.

English Spanish Together

You can download a copy of  Diagnostico: Cancer de mama metatasico .

….and here is the English version: Diagnosis: Metastatic Breast Cancer

MBCN also offers Conozca Los Datos as well as the English version: Get the Facts

 If you’d like hard copies of the above brochures, drop us a line.

This handout offers an overview of MBC in Spanish..  And here are questions you can ask your doctor about MBC.

 Here is a list of nationwide MBC  support groups–the majority of which are in English. But there are are some Spanish speaking Stage IV groups–here is a fairly new one:
CALIFORNIA: Mission Viejo
“Nuestro Camino Juntas”
3rd Tuesday of each month
11:30-1:00
Mission Women’s Wellness Center
26732 Crown Valley Parkway, Ste 171A
Mission Viejo, CA 92691
Contact: 949-481-4145 – Marilyn Viera, LCSW, Support Group Facilitator
Are there additional Stage IV materials/resources in Spanish we should know about? Let us know–we are happy to add them.

Adrian B. McClenney, IBC Patient Advocate, Author and Inspiration

August 14, 2016

 

We are sorry to share that Adrian B. McClenney has died. Adrian was 46 years old–a beautiful, wife, mother, grandmother, sister and friend.

I met Adrian in New York when we both participated in a workshop conducted on behalf of the Metastatic Breast Cancer Alliance. We were there to provide insights on what people living with Stage IV breast cancer wanted the general public to know about the disease.

I called Adrian and asked if she would like to go to breakfast. She readily agreed and met me in the lobby. Adrian had a seemingly effortless beauty–I don’t know many people who could look that radiant, that together, first thing in the morning, but Adrian definitely could!

We started talking and I learned Adrian was a bus driver until she was diagnosed with metastatic breast cancer. If there was an award for Nicest and Most Glamorous Person Driving a Bus she surely earned it. The transit industry’s loss was patient advocacy’s gain: Adrian was active with many groups–both where she lived in Miami, but also on a national level.

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Read more here.

Just a few weeks ago, Adrian flew to California to participate in Project Lead, a prestigious science training program for breast cancer activists. She also is a 2016 Ford Model of Courage–she participated in a photo shoot, modeling gear that is sold online to raise funds for three breast cancer non-profits.

Adrian held a special place in my heart because like my mom, she had inflammatory breast cancer (IBC). IBC is a rare, but aggressive breast cancer that doesn’t have a lump. Overnight, a person’s breast may become red and swollen with the skin having the texture of an orange peel. It accounts for about 5% of all breast cancers and is usually found at Stage 3 or Stage 4. People with IBC are often misdiagnosed–their cancer may be confused for a breast infection such as mastitis. Further complicating Adrian’s case was her breast cancer’s triple negative subtype. Triple negative breast cancers are often more aggressive, and, since there is no protein or receptor to target, chemotherapy is typically the only treatment available.

It took five months for Adrian to be properly diagnosed. She worked to inform others about IBC, starting an initiative called Hot Pink  High Steel Toe Boots “to educate the world about inflammatory breast cancer.”

Adrian was diagnosed with Stage 3b IBC on May 19th 2011. Her treatment regimen consisted of 16 cycles of chemotherapy, a bilateral double mastectomy and 37 radiation therapy treatments. In  March of 2012, Adrian had No Evidence of Disease (NED). Unfortunately, in July 2014 she learned her cancer had returned and this time it was metastatic, having spread to her neck, check wall and pelvis.

When me met in New York, Adrian told me a little about her family and her pride and love were obvious. “All I could think of were my children and who would take care of them,” she said, when remembering her diagnosis. Her daughter was in fourth grade at the time of her original diagnosis. Her son was playing college football for a well-known program but Adrian would never have told me that–she seemed very modest–both about her own talents and those of her family.

AdrianOn Facebook, she was Author Adrian–she wrote two books: “Pink Lifesaver”, a 31 day affirmation book with biblical scriptures included and “Pink Sunshine”, a self-help workbook designed for you to realize what you’re grateful for and what truly means the most to you. She  also co-authored “Igniting Your Faith Factor.”

A quick glance at Adrian’s Facebook page shows the tremendous legacy she leaves. Friends and fellow advocates from across the county shared photos and how much Adrian touched their lives. Many spoke of her laugh, her smile and her strong faith. Others also shared how Adrian had reached out to encourage and inspire them when they faced challenges of their own.

Adrian3Her faith never wavered. Adrian was often exhausted from her treatments but few people who saw her would have guessed this. “There are many things in life that happen that we don’t plan, but we adjust, regroup and keep pushing forward,” she said. “No matter what, I refuse to lose. I am tired every day, but it is my duty to fight like a big girl. All the challenges I face, I do it with a smile. I have a family that needs me, but loves me more.”

Our sincere condolences to Adrian’s family and friends. She will be sorely missed.

–Katherine O’Brien, August 2016

 

 

 

 


Before, During and After: Laura’s MBC Story

July 8, 2016
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Laura and friend

Laura Snyder is a wife, mother of two, triathlete and patient advocate. In 2012, at age 49, she learned she had stage IIIa  breast cancer  that was ER-positive and HER2-positive.Chemo, surgery and radiation followed and she was deemed cancer-free.  But nine months later, Laura felt a lump in her neck. 

She learned the cancer had metastasized to her lungs, liver, and mediastinal and supraclavicular lymph nodes. Laura was treated with Taxotere, Herceptin, and Perjeta. After scans showed no evidence of disease (NED), she continued on Herceptin and Perjeta. Early in 2015, while doing flip turns in the pool during her regular swims, she felt mildly disoriented. She subsequently learned she had brain mets.  Whole brain radiation followed as did  Xeloda and Tykerb. In January 2016, additional lesions were found and she had gamma knife treatment. In June of 2016, after experiencing vertigo, Laura learned she had more brain mets and again had gamma knife treatment. She’s currently on TDM-1. 

After Laura’s most recent gamma knife treatment, she drew a self-portrait of herself in “the cage” aka the head frame used to ensure a patient remains in the exact same position for the procedure. Her drawing was so powerful it prompted us to invite her to share her story–and like Laura, this story is multi-faceted. Brain mets is part of it but there is so much more. You can read more about Laura on her blog. –Katherine O’Brien, MBCN, July 2016

 

Before, During and After

By Laura Snyder

June 2016: Back in the Cage | Before: – the abject, jaw clenching dread. During – the “Breathe, just breathe, from the belly” I repeat to myself throughout the seven hours I’m in this cage, feeling like a torture victim right out of a sci-fi horror movie. After – I don’t remember, did we get Vietnamese food?  As David Byrne sang, “Well, how did I get here?”

Let’s go back in time. . .

July 2012: Stage IIIa Diagnosis | In July I did my best Olympic distance triathlon to date. That’s a mile swim, a 25-mile bike ride, and a 10k (6.2 miles) run. I was a youthful 49 years old. This was me four years ago, thinking about whether to continue with this distance or move to a half Ironman.

Yup. One month later, I was diagnosed with Stage IIIa HER2+++ breast cancer in my right breast and several lymph nodes. Premeds are better now but the treatments have been the same for decades. Some of us call it Poison/Slash/Burn. First I had a six month regimen of difficult IV chemotherapy, followed by a bilateral mastectomy right to implants and axillary lymph dissection in which twenty of my precious lymph nodes were removed.

Pathology showed I did not have a pCR (pathologic complete response) to chemo, which I had been hoping for, and which I would have prayed for were I not a staunch atheist. Then the Burn – seven weeks of daily radiation an hour from home. I was done (except for the rest of the Herceptin infusions)! At least I thought/hoped I was.

May 2014: It’s Back | I suddenly felt a lump in my neck in May. It seemed to come out of nowhere. I tossed and turned with anxiety all night, and in the morning called my beloved oncologist. His response was “When can you get here?” Two hours later he was talking me down from a cliff and encouraging me to let the biopsy tell us what was going on.

Turns out I am one of the estimated 28% of early stage breast cancer survivors whose cancer metastasizes – mine to lymph nodes, liver, and lungs. After another regimen of chemo, this time for about eight months, I was pronounced NED (No Evidence of Disease). I prefer to call it NRED at this point of being a grizzled old cancer veteran, which stands for No Radiologic Evidence of Disease. Because with MBC YOU JUST NEVER KNOW.

June 2015: Brain MRI | In June,  I felt just a little funny doing flip turns in the pool. In another life I would have chalked it up to hunger, or dehydration, but in mets life I bugged my doc for a brain MRI. Yup. Eighteen lesions in what’s called a miliary pattern (don’t ask, I still don’t get it!), which meant they could not be treated with gamma knife so ten rounds of whole brain radiation later I was sent home to wait and see what my next scans would show. And I had to drop my beloved Herceptin and Perjeta and switch to Xeloda and Tykerb which are thought to cross the blood brain barrier.

January 2016: Shocking Developments | January: I was shocked – I don’t know why – to find out there were four lesions in my brain. Gamma knife here we go.

This involves wearing a cage literally screwed into the head, two in the forehead and two in the back of the head. It’s not lightweight by any stretch either. Each lesion would take about twenty minutes so I was in the game, after waiting hours for the detailed MRI to be read and for the radiation oncologist and medical physicist to plan their attack. Afterwards at a Vietnamese restaurant I was horrified to notice there was blood dripping down the back of my head.

June 2016: Vertigo | I’d had one clean brain MRI in April. Six weeks later I experienced some awful vertigo and asked to have the next one early. Lo and behold, a few more lesions to zap. Unfortunately, the more detailed MRI (1mm slices v. 5mm slices) showed 22. Yep, 22. I thought well, that’s it, I’m dead.

But the team wanted to gamma knife them all. I picture Dr. Kee, Dr. Adler, and the physicist whose name escapes me engaging in a huddle, coming out, doing a big chest bump, and hiking the ball. They were rock stars, as were the nurses and even an aromatherapy lady spritzing me with lavender and telling me to breathe as they bolted the frame on.

I was loopy (Ativan and Oxycodone), most of the time but I sensed that there was always some combination of this group around me, making sure I was doing OK. I wasn’t (who would?), but as we like to say at my house, it was “good enough for who it’s for.” I spent seven hours in the cage this time.

Treatment was again switched to TDM-1, part chemotherapy and part targeted treatment. And here I am. I am still reeling a little, and worried.

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“Self Portrait With Cage”  by Laura Snyder

Drawing My Feelings | I drew this picture (the first I have drawn since high school art class) as an outlet for how I felt/feel. Most people are lucky enough not to see an image like this in their lifetimes!

While drawing, I referred to a photo of me resting in denial of the cage around me. My  drawing expresses the angst, sadness, and pain of finding oneself in this unenviable position. I’m no artist so I feel silly saying this, but I’m inspired by Frida Kahlo’s self portraits depicting the intense pain she suffered.

I call it “Self-Portrait with Cage,” stating the obvious. I couldn’t stop thinking “the devil’s in the details” when I looked at it. I think it’s because I drew very literally – the different colors of metal, the bolts and screws, the creases in the pillow and folds in the blanket, the dark circles under my tired, gray-tinged eyelids. I am planning to draw a series where I try to capture the emotions around MBC and its treatments.

How I Feel Now | In spite of this depressing report detailing the last four years, I find myself pretty content if I look through the lens of the everyday. I am a dedicated yoga practitioner and this I think has helped my body and mind more than anything. I don’t work, because each time I’ve tried some cancer catastrophe is thrown my way to deal with (see all of above!).

I swim; knit; write (not enough); play ukelele; hang out with my husband, kids (18 and 20 years old), and friends; and of course have started to draw. I started a yoga for cancer class at my local hospital, taught by my fabulous and inspired teacher, a yoga therapist. I’ve attended two LBBC Metastatic Breast Cancer Conferences and made deep friendships that started online even deeper. And learned how to be an advocate in LBBC’s Hear My Voice Program and lots of other stuff too.

Summing Up | I’m still alive to say that if you have MBC I have some advice:

  • Support groups, whether online or in person, are invaluable. We can be so isolated and scared without other people to communicate with who walk in our shoes.
  • And… be careful about getting your information from legitimate web sites or oncology professionals. There are a lot of ridiculous scams and “cures” to be found. Go the science direction.
  • Find a yoga class that suits you and exercise when you can.
  • AND find some contentment in your life every day. Your life is not over yet!!

Remembering Sarita Joy Jordan

June 21, 2016
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Sarita at MBCN’s 2015 Conference in Boston

We are sorry to share our friend and fellow advocate Sarita Joy Jordan died this past weekend. Our sincere condolences to Sarita’s family and friends.

I met Sarita shortly after her 2013 metastatic diagnosis. We were at the YSC conference in Orlando and she had just participated in the Disney Princess 5K. Her first thought was for her children–I think that was always her outlook–her children came first.

I often told Sarita that she was so well named–“Joy” was her middle name and she truly exuded it. Sarita brought joy to so many people. If they were having a bad day, they could count on her Facebook posts to raise their spirits. They were often just a cute picture, sometime selfies of her morning drive with “Mini Me” as she sometimes called her youngest son. Sarita was very proud of her kids’ athletic, artistic, musical and scholastic achievements–we loved to share in this pride when she posted their latest accomplishments.

Sarita’s ever present smile was her trademark. She was among the most open and giving people I have ever met. Sarita gracefully dealt with insurance and other issues that would have made most of us swear, cry or just rant. That was not her way. She just deal with things–and she had faith things would ultimately be resolved.

Faith was so very important to Sarita. A lot of people don’t live their faith–Sarita really did–she embodied The Golden Rule. She touched so many lives–and by her own example surely inspired others to love their neighbor, too.

I don’t think Sarita ever hesitated to try something new. A few years ago, she was urging me to sign up for “Casting for Recovery.” Although I am a country mouse, the idea of putting on hip waders and standing in some body of water trying to catch a salmon or trout with a fly fishing rod was not in my comfort zone and I said so. Sarita, the Philly girl, didn’t hesitate at all. Even after she hooked her eye with first ever cast, her enjoyment wasn’t diminished one bit.

Last fall she posted a video of another adventure–this one was First Ascents, I believe. The trip involved  not only kayaking but sitting in the kayak on a bridge about 10 or 12 feet above the water and launching the kayak–essentially jumping into yet another body of water but while wearing a kayak. I can still remember the cheers in that video after Sarita successfully completed the challenge–maybe none louder than hers.

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Mary Hernandez and Sarita shooting the MBC Alliance video: https://www.youtube.com/watch?v=AqUS582jkfg

Sarita was a tireless advocate. She worked with the American Cancer Society, Living Beyond Breast Cancer, the Metastatic Breast Cancer Network, the Metastatic Breast Cancer Alliance, Young Survivor Network and I am sure many others. A few months ago, despite all that was going on with her health, she even served as a DOD reviewer.

For an LBBC blog post, Sarita reflected on why she told her story: “I choose to share my story so that others don’t feel they are alone. I tell my story because I am an African-American and my community needs to be able to relate to the messenger…I  tell my story because I’ve learned that little money is spent on research for metastatic breast cancer and I’m running out of time to have my voice heard. This is why I am so grateful to be a Hear My Voice Outreach Volunteer with LBBC: to participate in community events and advocacy for metastatic disease. I tell my story for those that are no longer able to tell theirs.”

Last year I wanted to make a video about racial disparities in breast cancer. Many of the people featured in the video were Sarita’s friends. I am indescribably sad that she has now joined those friends.

But I will take my cue from Sarita–I will tell my story–and others. And I will embrace the words Sarita used in her Facebook profile: Educate, educate, educate!

Sarita’s legacy is everywhere–in her children, in the many, many lives she touched, in the countless advocacy projects she did. It was truly an honor and a blessing to have known Sarita. I miss her already and I always will.

—Katherine O’Brien, June 2016

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RIP Holley Kitchen, the MBC Mom Who Reached Millions

January 12, 2016

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We were so very sorry to learn Holley died today, January 12, 2016.  She was 43 years old.

“Our hearts are broken as we share the news that Holley peacefully passed away early this morning,” writes Holley Facebook page friend and administrator. “She was surrounded by love, as she has been in every moment of her life. . .Details regarding Holley’s services will be forthcoming. Please respect the privacy of those closest to Holley as they grieve and make all the necessary arrangements. Thank you for your unending support and love.”  ‪#‎Lifer‬

Anyone who wishes to support the Kitchen family financially, can find the links here. Our hearts go out to Holley’s family and friends. She was a true gem.

“I didn’t know my risk for reoccurrence or what metastatic disease even meant,” she told PEOPLE magazine about the impetus for her famous video. “I didn’t want someone feeling…

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Sherri Shares: My First Visit From Hospice

August 13, 2015

See sherrifillipo.com

“Once a nurse, now a patient” is how Sherri Fillipo describes herself on her blog.  Sherri was first diagnosed with breast cancer in 2010 just prior to her 50th birthday; her metastatic diagnosis followed in 2012 when she learned her cancer had spread to her liver. Sherri has done several guest posts (The Conversation, When a Nurse Becomes a Patient, Why Does My Oncologist Always Ask Me How I am Feeling and Improving Your Cancer Patient Experience). Sherri recently entered hospice–we have found her blogs very informative and hope you will, too. Here’s Sherri’s account of her first hospice visit. 

My hospice nurse,  Melissa, recently made her first visit. I fretted about the apartment, plumping pillows, dusting counters like I was having a dinner party. I don’t know why. I guess of all the people I have ever had come to my home in the past 55 years, hospice has not been one of them!

We ended up spending two hours together and I am not sure why except I had a million questions that I wanted answered,  more from a curious nursing perspective than patient. At one point, she looked at me and said, “Most people don’t want nearly this much information this soon!” I told her I did. This is an area of nursing/healthcare that is a total mystery to me and I was determined to draw back the curtain and get some answers by dern!

Truly, it was what I would call an intake assessment. Basic demographic information from me, though we did tip toe around delicate issues of death (Did I have a ‘Do Not Resuscitate’ Order? Do I have a healthcare proxy?). I believe she would go as far as her patient would let her. Some of the things I wanted to know included:

  1. Can you use my port for medication? No, they do not use the port. They will provide medication by mouth until the swallowing reflex is gone and then they transfer to a liquid mixture that they say works well when given via a syringe (no needle on the syringe) into the back of the throat that slides down and does the trick.
  2. Will there be morphine in the home (the nurse in me goes, “WHAT?”) and the answer is yes.
  3. I asked her if my neighbor could administer it and the hospice nurse said she could. Then I shouted over my terrace to where my neighbor was sitting on her terrace and asked her if she would like to give me morphine when the time comes and of course she said, “I would love to but only if you will share! You know those old Bianca commercials where they spritz a little mouth freshener into their mouths?” She said she would just take a little. NO, she is not serious. She just knows how to make me laugh in tense situations.

Things I learned:

  • Patients are placed on teams of which there is a nurse, social worker, spiritual liaison and host of others. There is a weekly interdisciplinary team meeting where you are the center of attention and the team discusses how you are doing, they review the meds you are on etc. I LOVE this idea. We do it in the hospital but not nearly enough. Everyone is together and everyone is looking at you from their professional perspective. Think holistic.
  • Everything is conducted here in the home which I mentioned yesterday.
  • When I begin to have difficulty with activities of daily living, there is an LPN who can come to the home an hour a week and assist with bathing, etc.
  • Physical therapy is a benefit (I am working on some way to get a massage out of this but I can’t quite figure how to word my need for one to make it sound medical!)
  • As a nurse I am used to the question (ten thousand times over), “One a scale from 1-10, how would you rate your pain?” Hospice has a different question which she said would be asked every time and it went something like this, “What is the one thing today that is most on your mind?”

All in all an oddly pleasant afternoon with this benevolent stranger. Next up, the social worker comes in on Monday. Stay tuned. All is well. Cats are curled up. The sun is shining. The temps are cool. I am drinking coffee.

Follow Sherri’s story at http://www.sherrifillipo.com