Late last month, Vice President Joe Biden held a Cancer Moonshot Summit at the White House, the intent of which was to vastly accelerate the “…understanding, prevention, diagnosis, treatment and care of cancer…” This summit had over 350 guests including Andrew and Esther Schorr, as well as 6,000 others participating throughout the United States.

I became aware of this initiative when Tom Brokaw interviewed Vice President Biden on national TV just days ahead of the summit. Mr. Brokaw has been with NBC News since 1966 and was network news anchor for over 20 years. During the interview, Mr. Brokaw talked openly about his cancer and spoke about the support he received both personally and from his professional community. He was particularly emphatic about how his employer really supported him.

Mr. Brokaw’s comments really hit a nerve. I marveled at his good fortune to have an employer who helped him deal with his cancer. Mr. Brokaw said as much.

Not all of us are so lucky.  Given the predilections of Corporate America, and increasingly in other economic sectors, the days of a being with one employer for an entire career are long gone. Depending on the quoted source, people can anticipate having between seven and 15 jobs in a career.

CLL tends to occur in people who are in their 50s or older. It is this same demographic that often has the most difficulty staying employed—and in finding new employment. Among others, there is a meme that older employees are more expensive, less productive, and have greater medical costs when compared with younger workers. Unfortunately, and despite the benefits of our experience, mentorship, and yes, loyalty (how anachronistic), we are nonetheless viewed as expensive liabilities.

In my own case, this meme has no basis in fact. First, physiologically I have been tested to be 15 to 20 years younger than my physical age. For example, I rode 75 miles on my bike this past weekend in near 100-degree heat and am disappointed that I did not get to my goal of 100 miles. Similarly, my professional experience lets me focus on what is important to a client, and then effectively allocate resources towards achieving those goals. My projects reflect well on my employer.  I am sure that I am not alone in debunking the myth.

Nonetheless, for those of us in the workforce with CLL, it presents one more challenge to be navigated. On the one hand, it is illegal to discriminate on the basis of either age or health. On the other, proving that one has been discriminated against is difficult given the vagaries and subjective nature of modern HR.

This is one reason why I blog under a pseudonym. On the one hand, CLL is just part of who I am, and I live well despite this. On the other, as a purely practical matter, I really don’t want to give potential employers a reason to pass me by.

Although just briefly hinted at in my first blog, this entire topic drew a very large response about to whom, and how, one tells people they have CLL. While there remains general concern about my health within my personal circle of friends and family, we have collectively processed this fact and focus on living. However, from a professional perspective, bringing this topic up just makes things that much more difficult, and I wish that were different.

We need a robust discussion here, not just in this blog, but more broadly. I welcome your comments about how you, or others that you know, deal with this thorny topic.

Thank you for reading!

Always hope. Never quit.

–           C.J. Chris

 

 

ros-chrisIn my last blog, I had an aha moment where I realized that I am becoming an advocate. I have had many titles over the years: daughter, sister, wife, mother, military spouse and volunteer. In all of those titles, I also realized that I tend to be a little controlling and driven. But never once did I associate the title “advocate” with who I was.

Today, I’m learning what that new title means as I try to figure out how it is that I evolved into this new role. Being an advocate is sort of like being a mom. One difference is that the voice I’ve used to yell and scold my children with, I’ve now toned down to speak to others. Another thing I’ve noticed is that I’ve become more informed on what lung cancer is and isn’t. As a mom, I could play Answer Grape [a colloquial phrase that refers to a “know-it-all” that started as an animated character to answer questions about wine. Today, it is used to answer a child’s questions]. I could be very creative in my responses to the kids. For example:

Child:   Why do I have to wash behind my ears?”

Me:   Because if you don’t, your ears will eventually end up sticking out from the side of your head!”

jillians-dreamToday, as an advocate, one of the first questions I get asked is: “Did she smoke?” Now I have to be calm, use that question as a teaching moment, and remain calm. Instead of a blaring and annoyed “NO!!!” I’m learning to return the question: “What made you ask that question?” Today, that’s followed by “Can I tell you a little about lung cancer?”

Turning into an advocate was not a path or job I would have taken on my own, nor is it one I think my family would have chosen for me. Up until Jillian’s diagnosis, I held many jobs. One of the jobs I worked part-time at was a hardware supply store figuring out the nut from the bolt! Each piece depends on the other to make a connection. It’s a great metaphor for lung cancer. A very basic and simple look at this would be to think of lung cancer, or any cancer, like this: the tumorous cancer cell needs many things to make its connection: blood, other cells, a sleeping immune system…in order to grow, mutate, metastasize. Nuts and bolts—the necessary connection. Or look at it like this: researchers need to think about tumors and clinical trials outside the box—to be innovative and figure out how to separate the nut (healthy cell) from the bolt (cancer cell). Yet another way to think of this metaphor: researchers, patients, survivors, oncologists need advocates to help make the connections they can’t do on their own. We are the nuts (no pun intended); they are the bolts.

ros-friendAs advocates, we have unique opportunities to use our voices to educate, raise awareness and fundraise for our cause. Right now, my cause is lung cancer. It’s hard to believe that it’s been three years since losing Jillian to this deadly disease. It’s bittersweet. Seeing so many more survivors who are thriving because of new therapies and treatments which have come about because of the nuts and bolts: the researchers; the oncologist and the patient.

In the last few months, I’ve attended and participated in two lung cancer conferences. LUNGevity hosted the first. The first day was an advocate track. For the first time, I was asked to speak to other advocates about my journey. In retrospect, it was an opportunity to talk about my whys: Why me, Why Jillian’s Dream, why now, why lung cancer. The short version is that as her mom, I had to be the one to talk about her, what happened to her and how unfair it was. Jillian’s Dream was started as my way to raise awareness and to educate people, to put a face to lung cancer that had nothing to do with smoking and to follow in her footsteps and help find a cure. Why now? Well, that’s simple…John Lewis once said: “If not us, then who? If not now, then when?” If I couldn’t be her voice who would be? And if I waited any longer to do something, say something, then how could I expect any change? That’s pretty much what advocacy is right? Although my speech didn’t go as I planned, and I got more emotional than I wanted, it was well received, because another lesson I’m learning as an advocate is that when you speak from the heart, it reaches the heart.

ros-panelThe second conference I attended was from Free to Breathe. In creating Jillian’s Dream, I thought I had established an innovative fundraiser that would and could be repeated with better results. One thing I didn’t take into account was the need to become that “leader” who knew how to delegate, motivate and lead. So participating with this group gave me the tips, tools and support. I’m very fortunate to have organizations to turn to not to mention all the friends I’ve made and can lean on.

Advocacy takes time—getting known and communicating a clear message takes time. Nuts and bolts. Advocacy is hard. You need to be strong and passionate, not overly aggressive, have a community behind and beside you, and a firm commitment to make a difference one person at a time, one day at a time. I didn’t grasp that quickly. For advocacy to work, and to work well, it needs all of us and the roles we play for a purpose. It’s not done single-handedly. It needs collaboration, sharing of information. Nuts and bolts. I’ve come to learn that. While my story is important, so are all of yours. We are a part of what makes up the nuts and bolts of lung cancer, and I, for one, am honored to be a part of the hardware.

Stronger than lung cancer,

Ros Miller

I have to begin this blog on a sad note. There have been personal and national tragedies that occurred since I agreed to write a blog about hope and optimism. I lost three friends to cancer in a week’s time … and last night, my city lost five police officers who were gunned down in cold blood while doing their job of overseeing a peaceful protest march. Sometimes, events make it hard to see joy and optimism, but it’s still there. We just have to look a little harder.

donna-roseEven though I will miss my friends badly, they each outlived their prognosis for stage IV lung cancer by years. The reason they beat the statistics and had years added to their lives after being diagnosed is because of the huge advances being made every single day in new treatment options.

I am the beneficiary of research. When I was diagnosed in 11/2012, my oncologist estimated that I would live only four months. I would have beat his estimate, even with only receiving traditional chemo treatments, but I likely would have succumbed to my disease within a year of diagnosis.

But when my cancer began to grow after stopping chemo to give my body a rest, I was fortunate enough to join a clinical trial for immunotherapy. The day I joined that trial, hope returned to my family and to me.

Now, three years after beginning to receive nivolumab, also known as Opdivo, I am not only aliv but living life. And, feeling good enough that a month or so ago I felt confident enough about my future health that we added two new kittens to our family. Their names? Divo, for the drug that gave my life back to me, and Esperanza, which means hope in Spanish.

donna-kittensDo you see the significance of this? After I was first diagnosed with cancer, I wouldn’t renew magazine subscriptions, because I didn’t want to waste the money. I thought I would die before a year’s subscription ended. Now, I am confident enough that I will live that I brought two new baby lives into our family, lives that will be dependent on us for many years into the future.

A cancer diagnosis is still scary, but I am proof that there is hope. I have many friends who were, like me, given less than a year to live. Instead, they are celebrating their 5, 10 and 15-year cancerversaries. Like me, they are the beneficiaries of research and either receive targeted therapies or immunotherapy or a combination of treatments. Not only do these treatments keep us alive, their side effects are far less than what we underwent when getting traditional chemotherapy.

donna-natureHope reigns!! And researchers are making tremendous strides. More and more of us are beating the odds. If you or someone you love receives a cancer diagnosis, give yourself a moment to grieve, but then, pull on your fighting boots. There’s still a lot of life to live!

Hating cancer…loving life,

Donna Fernandez

slippersAs we are at the mid-2016 mark, it’s probably appropriate that I update you on a behind-the-scenes look at Patient Power. Perhaps, like you, each year we do some goal setting, and we have a planning retreat near Seattle in August to start. Remember, Patient Power really has no “office,” as the team works virtually around the world. It’s much cheaper, and we get to wear our fuzzy slippers while we work. :)

Last August, we set goals to expand…more visitors and members, more content distribution channels, more partners, more languages, covering more countries and a wider group of cancers. We also set out to bring in more voices from the communities we serve and to get more involved in policy issues that affect our communities.

I am happy to report we’ve been pretty successful—with your help—and I’d like to tick off some examples, with great thanks to the Patient Power team who made it happen:

    • In a typical month, the main Patient Power websites have about 55,000 visits. But our reach is greatly amplified by exposure on social media pages and others websites—like OncologyTube.com where our videos have been viewed 2.3 million times, in many cases, by doctors.
    • We have growing partnerships. This includes an expanding one with the American Association for Cancer Research and their 37,000 members. Our goal is to work with them to connect patients with researchers and move us all toward cancer cures—faster!
    • Several new hosts have been working with us—patients who are living the condition that’s discussed. Janet Freeman-Daily is a lung cancer patient who is adding so much perspective. She hosts a town meeting coming up in September in Chicago.
    • We’ve kicked off our “Where Are They Now?” series of blogs and videos sent in by patients we’ve met before to tell everyone how they are doing and to inspire us.
    • Esther and I have launched regular LIVE video updates on Facebook, and we are looking forward to conveniently and quickly sharing the perspectives of others, too.
    • joe-bidenRecently, I participated in a workshop about cancer drug costs with the President’s Cancer Panel. I was honored to be included, and it’s clear we can bring patients’ perspective to key public policy issues. A couple of weeks later, Esther and I participated in Vice President Biden’s Cancer Moonshot Summit and, again, it was thrilling to add our voices to major discussions about cancer.
  • Our creation of new video content has stepped up, too, with more town meetings in the second half of the year across several cancer conditions. We’ll be in my old hometown of Charlotte, and in Little Rock, Chicago, the Los Angeles area and Houston. The recent events in my other old hometown of New York City were very satisfying. And, of course, we were at the big ASCO meeting and will be at ASH in San Diego in December.
  • Our activities are not just in the U.S. Our team who runs PatientPower.eu have been busy in Europe covering medical meetings for patients, signing partnerships with government cancer agencies like CNIO in Spain, and planning town meetings like one on CLL in Barcelona for people who speak Spanish anywhere.
  • andrew-esther-irelandThe drumbeat for “patient centricity”: finally governments and pharmas want to more regularly hear the voice of patients. Because many of you are members of our communities, we have called on you to help us bring the “patient voice” to these groups. Many of you have volunteered and we have had discussions between patients and these interested parties in Miami, Dublin, Chicago and near San Francisco just to name a few. Thank you for being willing to share your voice this way and in our regular surveys on key topics!
  • Lastly, we are now covering more cancers. The newest area is head and neck cancer, and we are gratified that patient groups and foundations in this area are happy to partner with us. As research moves ahead we are hoping we can tell a positive story for patients and caregivers.

Before I wrap up, I wanted to clarify a few things: first, the team at Patient Power does this much more for love than money. While we are technically a “for profit” (like PatientsLikeMe, Facebook, NBC, CNN and BBC, etc.), we reinvest everything we can. So often we produce important programs that have no sponsors or advertisers. And everything is always free and editorially independent. Second, we welcome true partners. We have open arms to work with and help others who will treat us the same way. We are always positive, hopeful, and not at all “territorial” or jealous. We believe when we all work together, “all boats rise.”

I know this is a lot to read and much longer than the typical blog, but I am writing this in the foothills of the Sierra Mountains near Yosemite in California. It’s peaceful, and I finally have had the chance to put on paper so many things I have wanted to tell you.

Please know that what you see from Patient Power comes from many people who are totally dedicated to you. And you always have a voice to contribute or to tell us how we can improve. We welcome your comments and suggestions as we strive to make the second half of 2016 a great one and a healthy one for all of us!

Wishing you and your family the best of health!

Andrew

For those of us who are struggling with this beast called cancer, I hope this helps in your search for financial assistance. I have found this disease to be very emotional for me and, as such, looking and asking for a handout is very hard to do, not due to pride (okay, maybe a bit). […]

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Welcome to ASCO—The American Society of Clinical Oncology, and its annual conference.  I covered this onsite two years ago, learning some rookie lessons about comfortable footwear and conserving energy.  Here, at the world’s biggest cancer conference, is often where major clinical trial findings are presented. One significant study result presented on Saturday had the biggest […]

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[Editor’s Note: Because Richard was diagnosed so late in life, the focus of his blog and subsequent research topics does not include information on stem cell transplantation. Instead, Richard focuses his well-honed research skills on therapies that are more closely associated with age-related risk factors and subsequent treatments.] I thought I had an active healthy […]

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People often see the birth of a child, marriages, graduations and other life events as milestones and points of reflection. For those of us who have cancer, the day we received our diagnosis with the big “C” is likely one of those. In that context, my CLL was discovered about 40 months ago and confirmed […]

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[Editor’s note: This blog was written by Patient Power staff member, Sheryl McIntire, on behalf of the Kearney Family]. Which is more difficult, being diagnosed with cancer or being told your child has cancer? This was the question I mulled over on my drive to visit the Kearney family at Seattle Children’s Hospital. I had […]

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[Editor’s Note: Over the years Patient Power has heard from many patients and care partners. With our ongoing “Where are they now” campaign, we get an opportunity to check in and hear updates from Patient Power’s amazing community members. Suzanne shares with us her latest news. For previous conversations and blogs with Suzanne, click the link(s) below.]  The […]

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