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.

Adrian2

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

 

 

 

 

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Celebrating Jill Cohen, Dancing With Cancer Blogger

August 13, 2016

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