Sunday, March 20, 2016

Myeloma weekend in Miami! Thanks Cure Mag for Recognizing Jenny Ahlstrom of Myeloma Crowd!




William and I had an amazing weekend in Miami. I was invited to attend CURE magazines Myeloma Heroes Awards banquet, along with my partner in The Myeloma Crowd (www.myelomacrowd.org), who I nominated (she won!) as a hero.

The weather in Miami was heavenly-- hot, humid and sunny. We ate dinner at Nobu, walked along the beach, and met up with some of my favorite myeloma peeps that I've known over electronic world, but now I got to hang out with them in person. I love cancer survivors-- they are pretty much universally amazing people. We stayed at the lovely Eden Roc hotel, with a very 1950's hip Mad Men flair. Our room overlooked the beautiful South Beach.

On Thursday night from my hotel room, I was interviewed on the World Hope Broadcast radio program for 20 minutes where I discussed tips on thriving life's curveballs. I can talk about THAT topic forever because I've survived some of life scariest moments simultaneously! And I found a really fabulous life on the other side of survival (well, between treatments, anyway-- myeloma treatments are really awful sometimes).

On Friday, I found out just prior to the awards gala that I was actually introducing Jenny's award. I was totally unprepared but since I can talk about our story and the myeloma world non-stop, it was fun. Talking about Jenny rocks because she is amazing and she really is my hero. She is a pioneer when it comes to showing what we patients can do. We do not need to sit on the sidelines being a patient, being passive, waiting for treatment and a cure. We can GET UP, LIVE and take a very active role in finding new treatments and living better.

After the ceremony dinner was over, I got THE BEST compliment EVER. A doctor walked up to me and said, "I saw you and your husband in the elevator heading down to the beach. You were so cute together and I thought how lucky this couple was to have a nice vacation together and here I was working. You looked so happy and adorable. And then tonight I realize you're here for the same thing I am. You're a patient. I had no idea! You are so vibrant and fun and alive. I have a newly diagnosed patient and I'd love to connect her with you. Would you mind?"

Mind? I'd love it! I love inspiring others when I can to live past challenges. Anyway, we got home last night and my daughter, Morgan, and I chatted for a long time. She melts my heart. While she's getting older and seemingly more independent, she still needs her mum. We missed each other so much that it hurts. I hate leaving my daughters, not even for a day. It was so good to be in the loving embrace of my children, who are my life. THEY are my passion.

Here's Cure magazines recap of this weekend's event. Now let's get busy finding that CURE!

CURE Honors Eight Individuals and One Organization for Support of Those With Multiple Myeloma
 
In keynote speech, TV and movie actress Marlee Matlin urges resilience.

BETH FAND INCOLLINGO @fandincollingoPUBLISHED: MARCH 19, 2016

In her keynote speech, TV and movie actress Marlee Matlin (second from left) spoke about her father's diagnosis with multiple myeloma, dealing with adversity by cultivating a good sense of humor, and more.
In her keynote speech, TV and movie actress Marlee Matlin (second from left) spoke about her father's diagnosis with multiple myeloma, dealing with adversity by cultivating a good sense of humor, and more. When it comes to being deaf in a hearing world, a recipe for success is to simply have “chutzpah,” and the same can be said for those fighting multiple myeloma.

Actress Marlee Matlin’s dad taught her to have that kind of strength in the face of challenges, and then he embodied the philosophy himself after he was diagnosed with multiple myeloma, the Academy Award winner told an audience of patients with the disease, their loved ones, patient advocates and health professionals during CURE magazine’s inaugural Multiple Myeloma Heroes Awards in Miami March 18. The event, which honored eight people for making heroic contributions in support of those with myeloma, took place during the 20th Annual International Congress on Hematologic Malignancies: Focus on Leukemias, Lymphomas, and Myeloma, hosted by Physicians Education Resource.

Matlin won the Academy Award at age 21 for her leading role in the movie “Children of a Lesser God,” and has appeared in television shows including “Seinfeld,” “The West Wing,” “The L Word,” “Switched at Birth,” “Picket Fences” and “Dancing with the Stars.” As a child who lost her hearing at age 18 months, Matlin received a tremendous amount of support from her parents and siblings, who taught her to deal with adversity by never taking no for an answer and by cultivating a good sense of humor. They lived those ideals, first by rejecting a doctor’s suggestion to send Matlin away to a school for the deaf, and later by creating stories that made her feel comfortable with being different – she had an “accent,” her brother told children who asked, because their parents were foreign spies.

When her father was diagnosed with multiple myeloma in 2003, he lived by the same principles, Matlin recalled. “He lived his life and (the cancer) was just part of who he was. He did not let it define him. He got up every day and proved everyone wrong,” she said. “He lost his 10-year struggle, but his life lessons are in me, just as they are for the heroes here tonight who will never take no for an answer.” Four of the people honored during the event — a doctor, a nurse, the founder of a website and a patient advocate — made their contributions individually, and four did so together, as part of a group that climbed Mount Kilimanjaro to raise funds for multiple myeloma research. In addition, the Multiple Myeloma Research Foundation (MMRF) was given a special award for making a difference in the lives of people with the disease. A collaboration between CURE Media Group, Takeda Oncology and MMRF, Moving Mountains for Multiple Myeloma brought together a 15-person team of patients, doctors, family members and supporters to climb Kilimanjaro’s famed 19,341-foot Uhuru Peak in Tanzania, Africa.

In conquering the world’s highest free-standing mountain, the team raised awareness of myeloma and nearly $250,000, with all proceeds benefiting MMRF efforts to accelerate research for next-generation treatments. During the evening, a documentary about the Kilimanjaro climb debuted, sharing with attendees not only the challenges involved in the climb, but the meaning behind it for participants. In a way, the climb was a metaphor, said Marty Murphy, director of patient education for CURE.

“A cancer patient has a unique and very powerful journey,” he said in the documentary. “It is an incredible uphill challenge, from initial diagnosis through how you get through your day-to-day, with your work, with your loved ones, with your physical situation. It’s such a major journey for a cancer patient.” Erik Lohrmann, vice president of sales, oncology, CURE Media Group, praised all the heroes for engaging in the kind of “team science” that leads to success. “You all move mountains in your tireless efforts every day to raise awareness about this disease and fight for a cure: researchers, drug developers and organizations like MMRF, all working together for the tremendous progress we’ve already made identifying newer treatments and, hopefully, one day, a cure,” he said. “Above all, there’s power in each patient support team: doctors, nurses, advocacy groups, spouses, family members, friends and peers. Time and time again, patients remind us that they could have come this far without their support teams.”

The individual winners were nominated by patients, caregivers and colleagues.

Michael S. Katz, a tireless patient advocate across a broad spectrum of cancers who helped shape the drug-development process, was honored posthumously. A management consultant for more than 30 years, Katz was a loving husband, father and grandfather who lived with multiple myeloma for 25 years and rectal cancer for five years. He served as a long-time board member of the International Myeloma Foundation, chair of the Patient Representatives Committee of the Eastern Cooperative Oncology Group, chair of the National Cancer Institute Director's Consumer Liaison Group, and also served as a patient consultant for the FDA. In 2014, he was honored with the American Society of Clinical Oncology’s Partners in Progress Award.

Katz was nominated by myeloma patient Nancy Stewart, who noted that his work on medical committees led to decreases in the amounts of dexamethasone and bisphosphonates prescribed to patients with myeloma, which has improved their quality of life. “He was just a remarkable man,” she said. “He connected with people, taught people about myeloma and let them know that you can live your life even though you have a diagnosis.”

Katz’s son, Jason Katz, was on hand to accept the award. “I wish my hero was here tonight to accept this award,” Jason Katz said. “I’m honored to accept on his behalf. He lived for his family and he lived for patients. It was a patient at a seminar that gave him hope, and he needed to pay that back. I think doing that gave him some extra duration to his life, so I’m especially grateful that this came from a patient. That’s what really matters in all this.” Mary Bohn, RN, OCN, is a nurse at Froedtert Hospital in Milwaukee, Wisconsin. A nurse for 32 years with an oncology certification for 25 years, Bohn works at her cancer center’s clinic with multiple myeloma and stem cell transplant patients. She speaks at support groups, plans survivor symposia, prepares patient and nurse education and, most importantly, cares for patients, often staying late to make sure their questions and concerns are resolved.

In September 2015, Bohn was the first nurse to receive the Chuck Koval Award from the Leukemia and Lymphoma Society for her service to the myeloma and greater blood cancer community. “Half the myeloma patients in our state know her,” said Lori Jemison, also a nurse, who nominated Bohn for the award. “I’m honored to have witnessed her hard work and compassion, and that I could nominate her for such a prestigious award.” Rafat Abonour, MD, is professor of medicine, pathology and laboratory medicine at Indiana University, where he has worked since 1995. Abonour established and directs the Multiple Myeloma and Plasma Cell Program at Indiana University and has authored or coauthored numerous peer-reviewed initial research articles, book chapters and review articles. Abonour has lectured nationally and internationally and received numerous awards, including the Sagamore of the Wabash, the highest honor an Indiana governor can bestow, in 2010. In addition, he created Miles for Myeloma, a bicycling program that has raised $3 million, so far, for myeloma research. His nominators describe Abanour as a caring and encouraging doctor who supports patients during difficult times. In a videotaped comment, Abanour praised his patients and their families as “the real heroes,” adding that “I love my patients, their families and the word cure.”

Jennifer Ahlstrom is a wife and mother of six from Utah who was diagnosed with multiple myeloma in 2010. Her goal is to keep her favorite job as a mom while helping to find a cure by filling the gaps in the work already being done. To that end, she created the Myeloma Crowd website, Myeloma Crowd Radio, Myeloma Crowd TV, all aimed at educating patients in understandable language. She also launched the Myeloma Crowd Research Initiative (MCRI), which has raised $300,000 to help fund two clinical trials testing immunotherapy techniques in high-risk and standard-risk myeloma patients.

She was nominated by her partner in those ventures, Lizzy Smith, a myeloma patient who has undergone several stem cell transplants. “She’s such a pioneer,” Smith said, and her work shows that “we don’t have to be patients and just wait to be treated and be passive and fearful.”

The remaining four honorees are patients who climbed Mt. Kilimanjaro. Stanley Wagner is a Brooklyn, New York, print production artist who was diagnosed with smoldering myeloma in 2012 that progressed to multiple myeloma in January of 2013. After five cycles of chemotherapy, Wagner has remained in remission. He climbed Kilimanjaro as an affirmation of his appreciation to the MMRF for working toward new treatments for people with multiple myeloma, and to his wife, Pam, for her support. In the past, Wagner has moderated a Facebook multiple myeloma support page and helped to launch a multiple myeloma support group in Brooklyn. Wagner was nominated by Jamie Slater, a colleague whose interest in climbing Mount Kilimanjaro sparked the idea for the Moving Mountains climb. “I nominated Stan because he’s an amazing person,” said Slater, who described him as “the gentlest man ever” and someone with great “strength of character.”

Bob Dickey, Jr., a single father of three boys, was diagnosed with myeloma in 2011 and underwent a stem cell transplant on July 4, 2012. A year later, he climbed Mt. Whitney as his first fundraiser for the MMRF. After a two-year remission, Dickey needed further treatment and joined a trial testing the proteasome inhibitor Ninlaro (ixazomib). A year later, he is near remission again. In addition to participating in fundraising climbs, Dickey enjoys speaking to cancer support groups and newly diagnosed multiple myeloma patients.

His nominator, Ryan Cohlhepp of Takeda, noted that, while most of the climbers went back to their lives after walking away from Kilimanjaro, Dickey spent two days at a center for orphans and displaced children in Africa. He added that Dickey’s niece, 8 at the time he was diagnosed, developed a children’s triathlon to raise money for myeloma research. “It speaks to the impact Bob has for changing this world,” Cohlhepp said. “He has truly become an advocate, and he truly is my hero.” Dickey told the audience that “heroes are ordinary people put in extraordinary situations,” and stressed that patients can’t make a difference without help from nurses, doctors, advocates and family members.

Jeff Goad, a 55-year-old Chicago beer sommelier, was diagnosed with multiple myeloma the week before his 50th birthday; he’s been in maintenance remission since 2011. Goad considers the MMRF a trusted resource and, as a marathon runner, has previously used marathons as a means to raise money for the group. Before they climbed Kilimanjaro, Goad and his wife, Ramona Biliunas, hiked the Grand Canyon rim-to-rim as a tribute to multiple myeloma patients. His brother, David Goad, who nominated him, noted that, after diagnosis with myeloma, “some will get busy dying and some will get busy living. I know one who is not just living the cards he was dealt. He’s chosen to embrace what’s possible.”

Jeff Goad thanked his brother for the support. “I’m immensely proud of you and all you’ve done to inspire me over the last six years,” he said. Charles (Chuck) Wakefield, a Texas dentist, was diagnosed with myeloma in December 2003 but currently has no evidence of disease. Always active, he was eager to participate in the Kilimanjaro climb. He also speaks to support groups and treats oral problems in many multiple myeloma and other patients who have undergone bone marrow transplant, preaching the importance of perfect oral hygiene. He was nominated by his oncologist and colleague, Brian Berryman, of Texas Oncology-Baylor Charles A. Sammons Cancer Center, who has also become a dear friend.

“It’s been a blessing to me to be involved with his life and to be involved with you guys,” Berryman said. “Dr. Wakefield is my hero. My mother (who died of myeloma) was my hero, as are you, myeloma patients and caregivers. There’s nothing I could do to be (equal to) you guys.” The evening’s final award went to the MMRF and was accepted by Sharon Saias, the organization’s vice president of marketing. “We have a staff back at the foundation that is just amazing, people that you don’t see who work so hard for the organization,” Saias said. She particularly praised Alicia O’Neill, director of business development and partnerships for the MMRF, who participated in the Kilimanjaro climb, saying that O’Neill “drives us with her passion and support, and just is an amazing friend to me and colleague.” “I’m so grateful and honored to be accepting this award for MMRF,” Saias continued. “We still need to all remember that it is an incurable disease, and our mission is to find a cure. As our founder says, we won’t take our foot off the pedal until we find that cure.”

The awards ceremony was led by mistress of ceremonies Kathy La Tour, CURE’s editor-at-large. In her keynote speech, with the help of her interpreter Jack Jason, Matlin told stories of obstacles overcome. She recalled being a 13-year-old actress in a theater program for deaf and hearing children and telling the actor Henry Winkler, when he visited, that she wanted to be a Hollywood actor like him. “Henry told me to never back down or give up my dreams,” said Matlin, who is still close friends with Winkler and, in fact, married her husband on Winkler’s lawn. “Eight-and-a-half years later, I was standing on stage with an Academy Award in my hand.”

Matlin described the headlines the next day that claimed she’d won due to “pity,” and the ongoing career that has proved those writers wrong. Finally, she related a Jewish parable passed down through her family, about a man who collects jewels and has a favorite diamond that gets cracked. A craftsman promises to fix it, but brings it back with the crack still there – and a rose also carved in. “Now the diamond has the most exquisite rose with a stem, which makes it more unique, remarkable and perfect,” Matlin said. “Every day, there are people who are facing a diagnosis of cancer, but when you honor heroes, you are little craftsmen creating beautiful roses out of what some people might think is an insurmountable challenge.”