Celebrating Jill Cohen, Dancing With Cancer Blogger

Jill Cohen, photographed by Ben Heath for the 2015 Story Half Told campaign

We are sorry to share that “Dancing With Cancer” blogger Jill Cohen died this past Thursday, August 11, 2016. Jill lived for a remarkable 14 years with metastatic breast cancer. She was 56 years old.

“Jill’s last dance with cancer occurred this morning at 11:18 today at hospice at Swedish at Cherry Hill in Seattle,” wrote her husband, Rik, in a Facebook post. “She was not in any pain. Susan her sister and I were there holding her hands as she breathed her last breaths. She lived life to the fullest, and wanted no “pity party” so do not mourn her death but celebrate her life by living and loving each other. Thank you to all for the hugs, love and reachouts from around the globe. Jill and I thank you from the bottom of our hearts.”

Funeral services are set for Sunday at 3PM at Congregation Beth Shalom at 6800 35th Avenue NE in Seattle’s Wedgwood neighborhood. In honor of Jill’s last request purple is the color of the day. 

“I know many women don’t live as long as I have with mets (12 years as of August 2014),” Jill said  in this post. ” I think I provide hope to many even though I have mets to multiple bones, liver and brain, long-lasting neuropathy and lymphedema as well as the usual fatigue etc. associated with years of treatment.”

Jill most certainly did provide her fellow patients with hope. She had so many talents and interests: music, cooking, writing, dogs and of course dancing. Although cancer was part of her reality, Jill was so much more than a cancer patient. She was always on the go. I was amazed in 2014, when Jill went on a tour of Bulgaria with her folk choir, Dunava. I really enjoyed Jill’s accounts of the trip: She was a keen observer with a fine eye for small details. “New shops, cafes, and restaurants abound,” she wrote of her excursion to Plovdiv, the second largest city in Bulgaria. “Except for the public toilets, where a squat toilet and Western-style toilet sit privately side by side. To use either one, you have to ‘pay’ the lady outside 50 stotinki, which regretfully doesn’t make the toilets any cleaner.”

Jill was very proud of her heritage–she gave her readers a wonderful glimpse into her faith and its traditions. In 2010, she wrote about celebrating the Jewish new year. “I was honored with the Kohen aliyah to the Torah,” she wrote. “Every time I am asked to read this blessing, I think of my father. For Dad, being a Kohen, a descendant of the ancient Jewish priests, was a special responsibility and privilege. . . I remember the first time I was offered the Kohen aliyah, at summer camp when I was about 15. I knew about it a few days in advance and had to call home long distance — collect! — from the pay phone to be sure I knew my full Hebrew name: Yachna Maryam bat Shimon Shir haKohen u’Masha Leah. Dad was startled but happy to oblige.”

Although Jill provided in-depth descriptions of all that was happening with her treatment, these accounts were straight forward–no drama, no despair, just the facts. Or, as Rik said, no pity party.

Jill was active with many cancer groups–a great spokesperson for those living with Stage IV breast cancer. She participated in Living Beyond Breast Cancer’s (LBBC) Hear My Voice patient advocacy program and shared her story here. She was one of five women with mets profiled as part of  A Story Half Told,  a national partnership with advocates, patients and healthcare professionals that aims to elevate public understanding of metastatic breast cancer.

Jill said that her philosophy was Dum vivimus, vivamus which means while we live, let us live. “Life is precious,” Jill said. “In a very real sense, we all have the same amount of time — today.”

May her memory be for a blessing.

 

–Katherine O’Brien, August 2016

Before, During and After: Laura’s MBC Story

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.

“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!!

Sheila’s Journey to Fight Metastasized Breast Cancer

Editor’s note: We are pleased to post this guest blog by Sheila Ghosh from the Netherlands, who wrote in response to an email from MBCN president, Shirley Mertz.  Sheila reminds us that mbc affects women around the world. We tend to get US-centric, but Sheila’s experience resonates with all of us. You can follow her blog at http://sheilaghosh.com/ or on twitter: @sheilaghosh.

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Dear Shirley,
Thank you so much for your e-mail asking for people who wish to share their story. I would very much like to share my story with others.

First of all, I am living in Europe, in The Netherlands to be exact. I went to college in the US and lived in the US for 11 years, although I’m a Dutch citizen.

I don’t know if you would want a story from Europe, but I follow MBCN and would like to have a chapter or network like MBCN here in Europe.

My story is one of hope and my recovery feels like a miracle to me.
I was diagnosed with stage 4 cancer in July of 2012, at the first diagnosis, when I was 42. There was no history of breast cancer in my family. Also, I didn’t feel anything in my breast because I was checking for lumps, whereas this tumor felt like my breast bone (upper part of right breast.)

The metastases were spread all throughout my liver, so that it was one and a half times as big, like a deflated soccer ball. My liver was in such bad shape that hormone treatment wasn’t an option because it takes 6 to 8 weeks to start working and my liver was barely working (bilirubin at 50). After the first 10 weeks of weekly chemo’s (AC) didn’t work well enough, I got very sick from infections due to neutropenia. I could not eat or talk because of the mucositis and stomatitis. Meanwhile, my oncologist thought the cancer was growing and didn’t have much hope. I did not think I would live till Christmas of 2012.

Fortunately, I was transferred in October to the National Cancer hospital where I was given Mitomycin-C locally in the liver. Two treatments and two months later the results were so good that much of the cancer in the liver was replaced by scar tissue. The liver stabilized and I could eat and talk again. From January 2013 I took Xeloda which reduced the cancer in the breast and since May 2013 I’ve been on hormone therapy (Letrozole). I’ve been in menopause due to the cancer, not the chemo.

I’ve gone back to work – I work as a IT architect contracting for the government – and have been getting back in shape by exercising and eating healthy. Most of the time I feel great. I look good again and can function almost as before. My message to others is that there is life after hearing you have metastatic cancer, and with the right treatment and frame of mind and support more is possible than you would expect. I’m not cured – the cancer is there but inactive – so as long as the hormone therapy works I’m fine.

I also am part of a social network of other women with mets here, because there are very few resources for people like us. What bothers me especially is that patients with mets often don’t seem to count. The images and fundraising campaigns in the media suggest that either you can be cured (stages 1-3) or else you face imminent death (stage 4) and this frightens people. Research results and treatments for metastasized breast cancer are not easy to find here and there’s a big gap in knowledge between oncologists and hospitals. The many regulations slow down research projects and make the drugs exorbitantly expensive. Still, I am extremely grateful for this second chance I’ve been given and it has made me value my husband, family, nature, friends and my life so much more, I’ve taken up windsurfing and writing and work less.

That’s my story. I’ve been writing about my experiences at http://www.sheilaghosh.com in case you’re interested. This is a public site so feel free to use anything that you find interesting, with a citation/ reference. I hope you don’t mind but I am publishing this letter on my blog so others can follow. If you do mind, let me know and I will remove it.

Please let me know if I can help in any way.

Kind regards,
Sheila Ghosh
The Netherlands

Energy and persistence conquer all things

Editor’s Note: If you enjoyed Sheila’s story, please consider sharing yours. Email your story (500 to 800 words, max) to us at mbcn@mbcn.org. Include your name and phone number–and don’t forget the photo!

Andrea: My Support Network is a Blessing

Andrea relies on TEAMSOSA to help her deal with her metastatic breast cancer diagnosis. In April 2014, she started this blog, which she updates on Sundays.

Read on to learn more about her story.

My name is Andrea and I am 37 years old. After I noticed significant breast pain, I had a mammogram and biopsy, and I was diagnosed with Invasive Lobular Carcinoma, that metastasized to lymph nodes, in late February 2014.

My doctor recommended a double mastectomy but then a PET scan revealed metastasis to my vertebrae, belly, sternum, and clavicle, as well as additional lymph nodes. Rather than surgery, I began chemotherapy in April. I have a significant family history and found to be a BRCA1+ carrier.

AN EXTENSIVE SUPPORT NETWORK

Since I do not live close to my family, I decided early that I would have to rely on my friends and “work family.” I have been blessed to have an extensive support network through my job. Working for 15 years in the same department has given me opportunity to experience growth as a person and a professional, and grow with my work family as they establish their lives and careers. These wonderful people are my primary support system and have organized fundraisers as TEAMSOSA.

MY CALIFORNIA ROOTS

I am originally from California’s Central Valley, and came to the Bay Area to attend college and start a career in local law enforcement and the Courts. During the past 15 years, I have obtained my Masters Degree in Criminal Justice while working full-time in a high stress, high demand workplace. I have established long-term personal relationships with coworkers who have supported me as I progressed in my career. Over time, we have become family, and watched each other experience personal joy and hardship. As a member of that community, my coworkers have stepped up with T-shirt fundraisers and luncheons. TEAMSOSA is my support community here, and they help with everything from chemotherapy appointments, to daily visits, or food runs.

MY SUPPORT SYSTEM

I am single, and have no children, hence the need for a support system. Right after the diagnosis, I decided I was not doing this alone. I communicated with close friends and family about the new journey, and nearly everyone has been overwhelmingly supportive. I sent an email to my workplace announcing my leave of absence and support has come from people I never expected it from. I was also placed in contact with retirees and other breast cancer survivors, and learned quickly how this disease has touched so many lives.

MY FAMILY HISTORY

There is an extensive cancer history on mother’s side including ovarian cancer, breast cancer, colon cancer, and lymphoma. I have two sisters and two nieces, who are aware of my diagnosis and what to inform their doctors for their health. Also, my mother was treated and diagnosed for breast cancer approximately 20 years ago. She is a retired registered nurse, and cancer-free.  My father has battled heart disease all of my life.  My parents have been supportive with frequent visits and regular check-ins, and wear their TEAMSOSA shirts with pride.

CANCER SUPPORT COMMUNITY

I participate in activities at the Cancer Support Community; my doctor’s office provided me with their information. Their facility and staff are courteous, professional, and empathetic. The Center is welcoming, and there are so many stories to be told within their walls. I attend a weekly support group, which has been very helpful in answering questions, as well as observing those progressing to wellness after recovery. I have met two other women who are my age, and also met other women who have gone through treatment for breast cancer. The resources there include exercise, creative activities, and a library, among many others.

MY TREATMENT

I was diagnosed fairly recently– in February 2014. I am undergoing chemotherapy as part of neoadjuvant therapy. My treatment plan includes surgery and radiation. I have had four (of six) cycles of Taxotere and Cytoxan.  The side effects have been rough, but manageable, through medication and rest. Mainly, I have experienced heartburn, hives, and fatigue. In between treatments, I try to get out of the house once a day, whether its to do an errand, or attend the CSC. I attend various sporting events with friends, including SF Giants baseball games (I’m a huge fan). My friends have been very good about inviting me to lunch or to go for walks, which reminds me daily that I am not alone.

WHAT PEOPLE SHOULD KNOW ABOUT BREAST CANCER

When I was first diagnosed, I took the time to individually tell friends and family. Each person provided me with an emotional response, as well as hope. No one said this wasn’t treatable. Everyone said it was going to be rough. One person said “it would be a bad year,” and another reminded me “it was not a brain transplant.” Along with some other sage advice, I was grateful to learn I had the support of so many who were aware this disease was TREATABLE.

While most women, through early detection or genetic testing, have treatment options that eventually end, I am aware Metastatic Breast Cancer requires long-term treatment. I am aware of the options I may no longer have because of the progression and behavior of the disease. However, I will continue to do what I can, until I cannot.

Andrea

 

Editor’s Note: If you enjoyed Andrea’s story, please consider sharing yours. Email your story (500 to 800 words, max) to us at mbcn@mbcn.org. Include your name and phone number–and don’t forget the photo!

Why Valerie Harper Inspires Me and Many Other Cancer Patients

Harper has just published this memoir.

By Katherine O”Brien, Secretary and PR Chair, MBCN

I know that Valerie Harper isn’t Rhoda, her old character from “The Mary Tyler Moore Show.” But when I hear her name, I think of her in that role. I loved Rhoda’s brash attitude and her many sarcastic comebacks.

“Rhoda was the sass to Mary’s spunk, the head scarf to Mary’s beret,” writes EW’s Jessica Shaw. “She was so beloved that she transcended sidekick status and scored a show of her own.” 

In my mind, Valerie Harper is ageless–she will always be the same age as Rhoda on “The Mary Tyler Moore Show.” But of course that’s not the case. Harper is now 73 years old. She recently  announced she is  undergoing chemotherapy for brain mets. This past January she was diagnosed with  leptomeningeal carcinomatosis, a  complication of her lung cancer in 2009. (Two to five percent of women with metastatic breast cancer experience leptomeningeal metastases (LM), read more here.)

Rhoda? Cancer? Brain Mets?  No way!

I was so sorry to learn of Harper’s diagnosis. “Inspiration” is a word that is often overused when writing about cancer patients, but I believe it applies here. No one would fault Harper if she preferred not to discuss her illness or her diagnosis. That’s her choice–as indeed we all have the right to determine what if any information we will share about our personal lives.

But she choose to be very open about having an incurable disease.

“This could draw more attention to cancer research. I think there’s an opportunity to help people,” Harper told  People magazine.

Harper, a nonsmoker, was  incredulous when she was diagnosed with lung cancer four years ago. “I’ve since come to learn that more women are dying of lung cancer than [from] all the breast, colon and pancreatic cancers combined [according to statistics from the National Cancer Institute]. And many of them are nonsmokers…Society thinks lung cancer equals smoking. But when I told my doctor that I don’t smoke, he said that 20% of his patients are nonsmokers. He also sees people who quit smoking – and 20 years later, this disease bites them in the butt.”

Harper thought she had beaten the cancer but in  August 2012, she experienced a “belt-like sensation” across her midsection. Then in mid-January 2013, Harper experienced numbness in her jaw. Subsequent tests ultimately revealed leptomeningeal carcinomatosis.

“I just want folks to see me, that I’m OK, that I’m not suffering so far,” said Harper. “There may be pain. There may be a lot of things ahead, but whatever they are, they’re ahead. They’re not now.”

In the past week, Harper gave many interviews. Writer Donna Kaufman compiled “The 10 Most Inspiring Things We Learned from Valerie Harper”:

1. Don’t blame yourself for tragedy. “If you die, you’re not a failure,” Harper said on Today. ‘You’re just somebody who had cancer. And that’s the outcome.”

2. Live in this moment, right now. “I’m not dying until I do,” Harper told Today. “I have an intention to live each moment fully.”

3. Remember that death is part of life. “I really want Americans, all of us, to be less afraid of death,” Harper said on The Doctors. “Know that it’s a passage, but don’t go to the funeral before the funeral. While you’re living, live.”

4. Let yourself be sad — but stay hopeful. “I don’t mean this to be Pollyanna! I allow myself the grief,” Harper told Today‘s Savannah Guthrie, when asked if she ever felt sad. “What I’m saying is keep your consciousness, your thoughts open to infinite possibility and keep yourself open to miracles.”

5. Don’t give in to despair when there’s more pasta to eat. When Harper first heard her diagnosis, she said on The Doctors, “I broke down. I absolutely sobbed. I let myself do it. Then I said, ‘Okay, you’ve been the drama queen. Now get over it and make the pasta.'”

6. Deal with your battles in the way that makes sense to you. When one of the Doctors asked Harper why she was spending her final days on a press tour, she responded, “Dr. Travis, this is not for everyone. This is my way of dealing with it.”

7. Don’t live in denial. “I’m trouble,” Harper admitted in a video message for People, “but when the smoke clears, I’ll be standing. Until I’m not. And I’m ready for that, too.”

8. Don’t forget to live just because you’re dying. “‘Incurable’ is a tough word. A lot of people were calling — ‘Can I come by the house?’ ‘Are you in a wheel chair?’ — because they hear it as this death sentence,” Harper said on Today. “Which it may be. But I’m not dying until I do. I promise I won’t.”

9. Never be afraid of what’s next. “I don’t know what’s ahead, but I’m ready for it. Onward!” Harper told fans in her People message. “I love you. And know that I’m okay. I am okay on this venture.”

10. Keep your loved ones close. Harper says she’ll be spending her final months with her husband and daughter while she undergoes treatments to try and slow the progress of her disease. “My doctor said it’s incurable — so far,” Harper said on GMA. “And I love that possibility. We all need to live in infinite possibility.”

In addition to her inspiring words, Harper is taking this opportunity to campaign for universal health care. “Health care for all! I mean, I’m lucky: I have my union, I have the greatest husband in the world, and the wonderful Cedars Sinai hospital,” she told People, “and that should be for everybody. It shouldn’t just be for me.”

On a forum for people with lung cancer, one poster wrote, “Rhoda was on [television] about her terminal cancer, what an interview God bless her and her family for those of us who saw this. This gave me strength and understanding of the diagnosis. Talk about lung cancer being the number 1 killer in the US,  great stuff today.”

Harper’s message also moved people with metastatic breast cancer. “I found myself uplifted by the words of a woman with only three months to live,” wrote one participant on a board for people with Stage IV breast cancer. “She does not fear death, she is ready, but in the meantime, she will keep her friends and loved ones close and live her life. While we all know these words to be true, hearing them from someone most of us grew up laughing at and admiring really hit hard. I applaud her spirit and her bravery and I pray that her remaining days are everything she needs them to be, and that her passing will be peaceful.”

Me too.

Live Sincerely

Penny’s tone through the telephone is upbeat, vivacious and decidedly realistic. She tells me her story. She was diagnosed October 24, 2004 with lobular stage III breast cancer, a type notoriously difficult to detect via mammography. Her cancer returned in 2009 and she’s had a difficult journey including a hemi colectomy. But Penny’s is not a sob story. While faced with her own mortality, Penny has decided to live.

“My inspiration comes from The Live Sincerely Project,” Penny told me. “Live Sincerely follows the journey of Vanessa who has metastatic breast cancer, her sisters Jessica and Christina as well as everyone who touches their lives. They challenge everyone to embrace life in all its elements, however ‘unfair, scary, hard, confusing, painful, fleeting, amazing and connecting’, they may be.” “On the site, visitors can take the pledge to Live Sincerely,” Penny explained. “So far 1,150 people have taken this pledge and I am proud to count myself among them.”

The Live Sincerely blog urges people to live each day with purpose, acknowledge that which can’t be changed, but seize the moment to change what you can with hope and creativity.

Back on the phone Penny tells me after she received her MBC diagnosis she decided to conquer her fear of heights by daring to zip line. And she has continued to zip line at every retreat she has attended. She’s an optometrist and her children are a junior in college and a senior in high school. Penny shares an open relationship with her children and together they savor moments that are both lighthearted and serious.

Earlier in the year when Penny was headed off to a breast cancer retreat she wrote to the girls of Live Sincerely to ask for pins. “I loved the sisters’ response,” says Penny. “They said: ‘The message is to ask each of us to look inward, reach outward and make efforts in your own life to live sincerely.’”

At MBCN, we like to share stories of how women and men with metastatic breast cancer are living meaningful and productive lives. How about you? Are you looking inward and reaching outward? We’d love to hear from you. Please comment below or drop us a line at mbcn@mbcn.org.

Shuyang (Sue) Yao

MBCN

Wall of Stories: 31 days of October

We at MBCN are so honored and proud to display Our Wall of Stories of those Living with Metastatic Breast Cancer on our home page—31 stories—one for each day of October.

We want to thank all of you who contributed and helped spread the message of what it’s like to live with stage IV breast cancer. Here is a screenshot of our story writers, but please visit mbcn.org to click on their photos and read their stories.

Thank you!

Ginny Knackmuhs

MBCN Board member

 

 

A daughter’s story

In 1999 my mother Hong was diagnosed with Stage II Her 2 positive breast cancer. In 2001  it returned and in 2009 after a long battle, my mother passed away. I am thankful I had such a courageous mother and of the many good moments we had in those years. However, as an immigrant family and as the caretakers of a patient who did not speak English fluently, we had difficulty navigating the labyrinth of metastatic breast cancer treatment and at times were incredibly confused and isolated.

I can only imagine now how incredibly scared my mother must have felt when she learned her cancer had returned at age 40, less than 2 years from when she was diagnosed. None of us knew that breast cancer could return or that when it did, it would no longer be curable. I can only imagine how she felt as my father reluctantly translated what her oncologist said: you now have mets to the spine, you are Stage IV and there is no cure for you. I was 11 and my brother was just 2.

In the years following we tried to do our best to obtain the best care for my mom. It was a challenge translating the types of pain she described to doctors and nurses. Reading scan reports often led to dictionary searches and my father or I were always required to accompany my mother to appointments to translate. Additionally, culturally speaking, patients in China are less aggressive in patient-physician interactions than those in the US where patient self-advocacy is encouraged and we were uncomfortable questioning oncologists, at least initially.

The most challenging areas were obtaining accurate information on treatment and clinical trials for metastatic breast cancer and finding support. Despite the Pink movement and the focus on breast cancer in hospitals, we just could not find complete information on metastatic breast cancer treatment specific to Her2. The language barrier did not help. We knew of Herceptin and we would hear of certain options such as taxanes and platinums but we didn’t have an understanding of all the treatment options.

Finally, during the duration of my mother’s battle with metastatic breast cancer, we weren’t able to find other Stage IV folks to connect with and did not feel like we had a voice. After neither the Chinese language support group nor the hospital support groups my mother found had any Stage IV members, it dawned on me that metastatic breast cancer is still in the shadows. This past month I found MBCN. I am glad that I am now able to share my story and I hope that collaborative efforts will bring more attention and research funding to this disease.

Sue (Shuyang) Yao

MBCN volunteer

Send us your story: the good, the bad and the ugly

A few weeks ago, I met an energetic, adventurous and determined older woman with metastatic breast cancer.  After exchanging pleasantries and our cancer “stats”, I suggested to her that she write her story for our website.  She kindly, but assertively, commented that she wasn’t sure that she wanted to write the kind of “positive” story that she thought we would expect.

She went on to talk about the struggle to deal with difficult and cumbersome side effects and the unrelenting stress of living with uncertainty.  This woman also spoke about the adventures that she was engaging in and the importance of these ventures in keeping her focused on moving forward.

We all know that dealing with mbc is complex, gritty, and at times, very unpleasant.  I invite you to share your story with us – even those parts of your experience that are more painful.  Do not feel that your story must only be positive.  MBCN is committed to raising awareness and this means that we are open to and desiring of stories that reflect all aspects of what it is like to live with mbc.

My best,

Joani

mbcn@mbcn.org