The Patient Power Blog

by Andrew Schorr – Host & Founder, PatientPower.info
Powerful Patients at a 2014 event at Moffitt Cancer Center

Powerful Patients at a 2014 event at Moffitt Cancer Center

I have written many times here about my frustration when groups that are supposed to have a devotion to cancer patients as their top priority get sidetracked by egos, distrust of one another, bureaucratic procedures and turf wars. Over the years, I have seen it happen much too often. But I am happy to report some instances now when groups are working together as true partners, and I want to call them out for credit.

Over the next weeks and months, Patient Power has plans to produce a number of “town meetings” for patients and care partners affected by specific cancer types. And great organizations are helping in each case.  On Saturday, we’ll be at Moffitt Cancer Center in Tampa to produce an event for people with lung cancer. Over 200 people are expected in person and maybe 50 or more watching live online. Moffitt has been great in providing staff, an auditorium, expert medical personnel and a mailing to their patients. Joining us for this event, and we hope for others, is a wonderful advocacy group, LUNGevity. We proposed a way to expand their “Hope Summit” events, and they agreed. We have been very impressed.

Later in March, we’ll be in Phoenix working with our old friends at Banner MD Anderson Cancer Center. We will produce two town meetings there—one on melanoma with the Melanoma Research Alliance and a second with our friends at the CLL Global Research Foundation. We are excited to do more in melanoma and appreciate the guidance and oversight from MRA. In CLL, we are looking forward to working closely with CLL Global on many projects this year in the U.S. and overseas.

Beyond these events, we have other growing relationships. One relationship is with PatientsLikeMe as we make a clear connection between their cancer communities and ours and give new services back to both. HealthUnlocked is great, too. Another relationship is with the chapters of the Leukemia & Lymphoma Society who always stand ready to help wherever we go. And in our work in myeloma, we appreciate the partnership with Myeloma Crowd and in the MPNs with MPN Forum, the MPN Research Foundation, and PV Reporter.

And then there’s the AACR (American Association for Cancer Research) and their Cancer Today Magazine. They have been great about raising awareness of our activities, and we look forward to helping them and all the research efforts they support.

Of course, social media groups have been strong partners, too, acor.org and Facebook pages administered by many devoted patients and caregivers.

Our hat is off to all these folks as they prove we CAN work together for you. When cancer groups collaborate, you win. You should expect this kind of partnership. And if you come across an organization that seems to always go it alone, ask them why.

Wishing you and your family the best of health!

Andrew

At 26, they told me I had an MPN and to take a pill. So I took it.

At 29, they told me I had a different MPN and to take another pill. So I took it.

At 38, I listened to what they had to say. And then I researched, I questioned, I consulted, I paid attention to my labs, my symptoms, my daily ups and downs, and I researched some more before I decided with them how to manage my health.

“They,” of course, are the knowledgeable MPN specialists wearing crisp white coats.   Like many MPN patients, I’ve seen a lot of them. And like many doctors, they can be intimidating. They live immersed in hematological details that I cannot understand. They know what is best for patients.

Wait a minute—full stop. That’s was the 26-year-old newly diagnosed me speaking. I exist today as an informed and active participant in my medical care. By becoming involved, I gained control not only over the course of my medical treatment but also over how I feel about my health. I am less anxious—my MPN is more manageable—I feel healthier.

Now how did I get here?

Read everything you can. Start with something comprehensive like the Leukemia & Lymphoma Society fact sheets.[1] Highlight the words or sentences you don’t understand. Take the highlighted sheet with you to your next doctor’s visit. Better yet, send the highlighted sheet to the doctor’s office before your next visit so that the doctor can review it in advance and use your office time efficiently.

Next, learn the CBC lingo. Read summaries of each lab test,[2] watch videos of experts,[3] and study your own results. Collect your lab results in a notebook and review them before your appointment. Create a spreadsheet to track key results. Notice a trend? Concerned about a spike? Highlight it and show it to your doctor.

Once you understand the essentials, dig deeper. Watch experts discuss specific topics, such as drug side effects or fatigue.[4] Read abstracts of new medical articles.[5] Research potential drugs, your doctor, weird words from your bone marrow biopsy results, anything. Interested in reading a full medical paper? Contact your local library or medical college and ask if they subscribe to that particular journal. Or contact the paper’s author and ask for a free patient copy. Don’t get bogged down in the details. Read the conclusion and then work your way through the article.

Get ready to talk with your doctor. Bring key research or Internet articles with you. Jot your questions down between visits and take the entire list with you to your appointment. Even if your research answers some of the questions before you see the doctor, reviewing your whole list will give your medical team a better understanding of your current concerns. Practice saying the important questions out loud before your visit. Sound like a silly thing to do? It’s a common practice tip for those giving speeches or starting difficult conversations. A lot of medical topics sound stupid the first time you say it. But once you’ve said it five, 10 times or more, it begins to sound like a reasonable question that you need answered.

Lastly, give yourself a break. Forgot your questions while shivering in the waiting room? Take a breath and ask them next time. Feel overwhelmed with medical lingo? Reach out to patient groups and ask for help. Find too many medical articles with confusing or contradictory messages? Set them aside and pick them up again when you are rested. It will take you a while to understand this disease and to become partners with your medical team. But you can do it. That’s what my now 40-year-old self believes.

[1] http://www.lls.org/resourcecenter/freeeducationmaterials/mpd/

[2] http://labtestsonline.org/

[3] Search for example, Dr. Susan Leclair.

[4] Consider http://patientpower.info/myeloproliferative-neoplasms/understanding; https://www.youtube.com/results?search_query=myelproliferative.

[5] http://www.ncbi.nlm.nih.gov/pubmed/

Samantha Trahan

 

Andrew with Dick and Carole Crew near Seattle just before Dick’s stem cell transplant in Summer 2014

Andrew with Dick and Carole Crew near Seattle just before Dick’s stem cell transplant in Summer 2014

Just two weeks ago, I wrote of losing an old television colleague to liver cancer. From diagnosis to death was less than two months. Today I am writing about the death this past weekend of another old friend and mentor, Dick Crew, who fought diffuse large B-cell lymphoma for about a year. While I have been so fortunate to live with two chronic blood cancers, my friends’ versions of malignancies took them much too quickly and with conditions where we have made less progress. Sadly, despite progress against some cancers, these very heterogeneous diseases remain formidable foes, and we must always be reminded of that.

I wanted to tell you a little bit about my friend Dick and how he made a difference to me and you.

I am writing this today from Charlotte, North Carolina where I worked as a television news and feature reporter 35 years ago. It was Dick who gave me my ticket to bigger things in national television and relocation to San Francisco in 1980. Dick was national executive producer of the PM/Evening Magazine television series that was zooming up in the ratings and proliferating from just five television stations to being featured on 110. My new job was to work with Dick and a small group of great producers to choose what America would see on that program every night and how to promote the stories on the program in a way that millions would want to watch.

Dick was my mentor in underscoring that viewers want to connect with stories about real people who have hopes, dreams, emotions and relationships that are key to their lives. That storytelling is what I learned from Dick. And it is central to what we do at Patient Power.

Dick also was much more thoughtful and organized than I am. He was an enormous help in organizing and positioning the book I wrote with Mary Thomas a few years ago, The Web-Savvy Patient. Dick had earned his PhD in communications and became a university professor. His strategic thinking really helped me, and I will never forget it.

It’s tough to lose a mentor and friend who you have known for 36 years, someone who enjoyed your wedding, someone who lived in three of the cities you lived in. Our lives criss-crossed again and again.

And it’s tough to see how variable the cancer journey can be. We talk so much about people doing better. But that was not Dick’s journey. Modern medicine let him down, as we still have so far to go.

For me, it just reminds me how we need to celebrate every day whether we are living with a diagnosis or not, and to cherish the lessons you get from friends. I know Dick’s teachings live on in what I do every day.

Wishing you and your family the best of health!

Andrew

 

Joel Blank

Joel Blank

By Carol Preston

I lost the dearest of friends last month. For those of you connected with the life sciences, you may know the name Joel Blank, a Yale-educated PhD who helped develop and win FDA approval for MRI, magnetic resonance imaging.

Joel also co-founded five start-up companies. But Joel’s true passion was his family: Paula, his wife of 52 years, daughters Stephanie (Jay Musoff) and Carolyn (David) Morris, and most especially his four grandchildren—Madeleine, Charlie, Gracie and Will. Joel poured his heart and soul into loving his family and creating memories.

Will the rest of us do the same?

Joel and I had been friends for more than three decades. In 2009, our lives intersected in a way that neither of us could have anticipated. Joel was diagnosed with multiple myeloma the year I had relapsed with CLL. Now, more than friendship tied us together. We shared a common goal: to beat these blood cancers. The difference was that Joel already had beaten cancer once—prostate cancer nine years earlier. He was a veteran of this ugly war.

When I relapsed, I was terrified. I thought, “This is the end.” I needed to be talked off the ledge. Rather than picking up the phone, I fly from Washington, DC to San Francisco to visit Joel. I was getting ready to start a new round of chemo. Joel was preparing for a stem cell transplant.

Memory retention is only about 10 percent, so I don’t remember much from that weekend. But what did stick with me were Joel’s parting words as I headed to the airport, “Carol, it’s a game. Think of the latest treatment as a bridge to get you to the next treatment. There are always new treatments. You’re going to be fine.”

And he was right. More than that, I wasn’t alone. My friend for three-and-a-half decades had taken on a new role, that of clinical mentor—someone who understood EXACTLY how I felt, who had walked this walk, and would walk with me on a journey we both could have done without.

Joel faced a recovery far tougher than many of us could have imagined, let alone handled. Post-transplant, he contracted Guillan Barré Syndrome and fought for two years—successfully—to get out of a wheelchair. What’s remarkable is that Joel never wavered from his passion for family and his mission to create those memories—no small task since his children and grandchildren lived on the East Coast. He and Paula flew to as many events as possible, including swim meets and awards ceremonies. He talked politics and science and music with the kids, treating them as valuable verbal sparring partners. Yes, Paul and Joel were blessed with resources to travel with their families to several countries. But yes, Joel sometimes toured in that wheelchair.

He didn’t complain. And he always kept in sight his goal of touching so many lives, especially his family.

You see, Joel decided that he didn’t have time for cancer. Physical therapy to recover from paralysis was exhausting. It also drove Joel to push harder to capture more family time, to create more memories. And once out of the wheelchair, Joel walked every day to build his strength.

Twice last year for Patient Power and the Patient Empowerment Network (PEN), I interviewed Joel’s doctor, Tom Martin of UCSF about the latest research in multiple myeloma. I would send Joel my video interviews, and like a proud older brother, he would watch them and comment. Tom Martin gushed about his star patient—Joel’s spirit, his fierce, unwavering determination to push through every medical adversity thrown in his path.

Except the one he didn’t see coming.

Joel on January 24, 2015 died of a stroke, which struck swiftly and, ironically, while he was taking one of those strength-building walks. He was 72. The end came quickly. He didn’t suffer. Everyone who spoke at his funeral (including me) regarded Joel as a best friend. His teenaged grandchildren shared warm, detailed stories about their “Papa Joel.” So many ingrained memories.

Can the rest of us say the same? What memories have we forged with our children, grandkids, nieces, nephews, brothers and sisters? Are they enough? Can we do more? Will we allow our cancer to consume our lives or, like Joel Blank, live larger than the cancer and, memorably touch the lives of family and friends? I vow to try harder. I wish this for you as well.

I am a two-time cancer survivor of chronic lymphocytic leukemia and myelofibrosis. I think about cancer almost every day as I wonder what the future may hold and how I am feeling that day. I think about my friends with cancer, too. Of course, I am thrilled that the publicity around World Cancer Day can […]

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Experts say there is tremendous promise in stimulating a patient’s own immune system to fight their cancer. A few new drugs are already on the market in this area for conditions like advanced melanoma and some subtypes of lung cancer. We have a town meeting discussing this for lung cancer on March 7th in Tampa and […]

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I wasn’t always a medical journalist. And I wasn’t always a cancer patient. Although, as I am lucky enough to age, it seems like a very long time. Yes, I began telling patient medical stories for a living in 1984 and became a leukemia patient in 1996. But my career actually started in Charlotte, NC […]

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Editor’s Note: This blog was first published on pharmaphorum.com. As the numbers surviving cancer increase, the onus must be on ensuring that the pathways are in place to treat the whole patient and not just the disease, to ensure they and their families have the support necessary to aid the best transition back to everyday […]

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I started as a television reporter at age 22 in 1972 in Charlotte, North Carolina. I was terrified. I won a job at the largest television station in the Carolinas, and they had an audience of 300,000 people. But I overcame the butterflies and went on camera, first on film, then videotape and finally live. […]

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Stress affects all of us in one way or another. By definition, stress is a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances. A new year presents new challenges for people on top of everyday stressors. Whatever your life challenges are, there are ways to manage your stress […]

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