August 13th, 2014 · Leave a Comment
By Paul Scotti
Some people who overcome a life-threatening illness feel motivated to give something back to those who helped make their recovery possible. Charlie Willwerth, a 61-year-old leukemia survivor and bone marrow transplant recipient from St. Augustine, Florida, is taking steps to help bring life-saving stems cells to others in need of a bone marrow transplant.
Two years out from his bone marrow transplant, and with his leukemia in remission, Charlie recently completed courier training with Be The Match, the world’s largest bone marrow registry, to become a volunteer stem cell courier. His new “job” -- transporting life-saving stem cells from a donor’s location to a matching recipient -- can take him anywhere in the world.
“This is the most direct way I can help others who have helped me get a second chance at life,” says Charlie. “If it wasn’t for my donor, I might not be here today to have the opportunity to help others with needs similar to mine.” Read the rest of this entry »
August 4th, 2014 · 3 Comments
Sometimes the only way to respond to a thing of beauty is to pour your thoughts out onto the page. And that’s what Mayo Clinic patient Jerry O’Donnell, of Waterloo, Iowa, did after being moved, perhaps even changed, by experiencing the beauty of music in the atrium of the Gonda Building on Mayo’s Rochester campus.
Over the past year, Jerry has been a regular visitor to Mayo Clinic, after being diagnosed with a rare form of abdominal cancer located in the duodenum. It was a difficult diagnosis. “Over a short period of time, the reality of my health became more weight bearing,” he says. “Even while at Mayo, peaceful moments were difficult.”
When something like that happens, he says, your values change and things take on a new significance. Jerry found healing moments while listening to the piano in the atrium in the Gonda Building. “The piano became a refuge,” he says. “Music brought hope and connection. A larger family emerged before me as did a humbler sense of self with more gratitude for just being alive today surrounded by the treasures of my life, my family. Music like ‘It’s A Wonderful World,’ ‘Amazing Grace,’ and even ‘The Wheels on the Bus’ can change us.” Read the rest of this entry »
July 28th, 2014 · 1 Comment
At age 39, Tom Peroulas was active and fit. Coaching and playing rugby, biking to work in downtown Chicago, and exercising daily kept him in good shape. So when he started noticing pain in his leg, groin and hip, he thought it was probably related to activity. He tried stretching and yoga. He rested it. He worked with a physical therapist. Nothing helped.
After several months of persistent pain, Tom turned to his doctor, who referred him to a specialist in orthopedics. By the time he turned 40, in April 2013, tests revealed the startling reason for his discomfort: an uncommon kind of cancer called chondrosarcoma that begins in the cartilage around bones. The cancer was affecting Tom's hip socket, or acetabulum. But although the source of the pain had become clear, the best way to deal with it had not.
Faced with a wide range of surgical options, Tom dove into researching his choices. After an exhaustive search that had him talking with physicians as far away as Canada and Europe, he decided to go to Mayo Clinic. Using a unique technique for hip reconstruction, the orthopedic surgery Tom had at Mayo allowed him to return to his life with the cancer removed and chances good that he won't need another reconstruction in the future. Read the rest of this entry »
June 25th, 2014 · Leave a Comment
"There's something weird going on," explained the surgeon in Las Vegas, Nevada. For retired hotel executive Charles Livingston, these words signaled the start of a long journey, which began following an emergency appendectomy. He had experienced abdominal symptoms and received various diagnoses before being rushed to the operating room for a burst appendix.
Following surgery, Charles received devastating news -- he had metastatic appendiceal cancer. His local oncologist referred him to Mayo Clinic in Arizona where he met with Nabil Wasif, M.D., a surgeon, and John Camoriano, M.D., an oncologist. Charles says he was immediately struck by the genuine concern both physicians had for him as a human being.
Working together as a cancer care team, the physicians recommended a debulking surgery and hyperthermic intraperitoneal chemotherapy (HIPEC). Charles agreed to undergo the extensive surgery and HIPEC treatment to save his life.
It's here that fiction becomes reality. Charles says that just before his cancer diagnosis, he had finished writing his novel, Gabriel's Creek. The story revolves around a man who faces learning he is terminally ill. Charles says he had never imagined that his future would hold the same challenges as the main character. He admits that there were few edits to the novel, so perhaps he was unknowingly preparing himself for what lay ahead, he says.
Watch the video below as Charles shares his story.
June 20th, 2014 · Leave a Comment
By Paul Scotti
Being diagnosed with multiple myeloma, a serious blood cancer, is difficult enough to accept. But being told that you also have a rare hematologic condition called amyloidosis — a disorder that could prevent you from receiving the bone marrow transplant necessary to combat your myeloma — could put anyone’s strength to the test.
Such was the case for 67-year-old Kendall Schwindt of Sun City, Florida, a retiree who spent 26 years with Walmart and who has remained active playing golf and riding his motorcycle. After experiencing a sudden illness in March 2013 while visiting his son, Schwindt knew something wasn’t right. After visiting his family doctor, he was told he had a very high creatinine level in his blood and was sent to a local nephrologist for a kidney biopsy.
His diagnosis — multiple myeloma, a cancer of the plasma cells, a type of white blood cell present in bone marrow. Plasma cells normally make proteins called antibodies to help the body fight infections. But that wasn’t only devastating news Schwindt would receive. Read the rest of this entry »
June 4th, 2014 · Leave a Comment
In the summer of 2013, Amy Supergan took a trip to Italy. That may not sound extraordinary, but there was a time when being able to travel and enjoy a vacation with her family seemed like an impossible goal.
Amy faces a range of challenging medical problems, but at the top of that list is pain so debilitating she was forced to quit her career and give up an active lifestyle. But through the care she has received at Mayo Clinic and her participation in an innovative clinical research trial, Amy has found a renewed ability to manage her pain, and enjoy friends and family when she is able.
"Although I may never ski again or be back at work, with the help of all of my doctors at Mayo, I am now able to live independently with some assistance," she says. "I have found happiness in being more relaxed and appreciating some of the smaller things in life. I don’t feel like I’m missing out on life as I did before." Read the rest of this entry »
June 1st, 2014 · Leave a Comment
June 1 is designated National Cancer Survivor Day – a time to celebrate those living with cancer. It seems ironic, though, for one day to be called out as cancer survivor’s day. Let's be honest – once you receive a diagnosis of cancer, regardless of what kind, every day is essentially survivor’s day.
As a two-time ovarian cancer patient, I know this. But the word "survivor" brings some dilemma. Exactly who is a survivor? What defines a survivor? Are you a survivor after you've completed a six-month chemo regime? Finished weeks of radiation? Lived for x-number of years cancer-free? The question or definition of a survivor is something I and others have grappled with for years.
“Survivor” is a strong and powerful word. According to one definition, a survivor is one “who continues to function or prosper in spite of opposition, hardship, or setbacks.” Sounds like every cancer patient I've ever known. But it’s also a label I’d apply to family members and friends. It takes a village to raise a child, they say. So, too, I believe to fight cancer. By that definition, aren't we all survivors?
May 16th, 2014 · Leave a Comment
Written by Eunice Nishimura
My journey started innocently enough as a neck strain I received while playing with my daughter’s golden retriever in October 2010. As the year ended, the discomfort had increased, and I sought out my physician in January 2011. He set up appointments for MRI and MRA exams. Once done, I quickly ended up at a level I Trauma Center, where I was diagnosed with a tumor on my C3 spine. The full diagnosis was stage IV non-small cell lung cancer with spine and lymph node metastases. The lung tumor was inoperable due to its proximity to the pulmonary aorta. Within 48 hours, the lymph node was removed, and I began radiation on the spine tumor, which lasted 3 weeks.
During that period, a cousin in Southern California suggested I contact Mayo Clinic in Arizona for a second opinion and gave me the name of Dr. Helen Ross. I had my consultation with Dr. Ross on Feb. 7.
From our first meeting with Dr. Ross, both my husband and I developed a trust and respect for her that continues to this day. Dr. Ross presents a forthright, open and considered respect for me not only as a patient but also an individual. She does not sugarcoat her evaluations. She always questions what has been done in the past and then takes it one step further. Read the rest of this entry »
May 6th, 2014 · Leave a Comment
By Paul Scotti
Melanoma is the deadliest form of skin cancer. And for those patients whose disease has spread beyond its origination site, most treatment options have offered only modest success in controlling the disease. So when James Donaghy of Huntersville, North Carolina, entered a clinical trial at Mayo Clinic in Florida testing the effectiveness of an experimental immunotherapy drug called MK-3475, he figured he had nothing to lose after several other chemotherapy treatment options failed to control his melanoma.
The 67-year old, Brooklyn-born Donaghy had his first experience with melanoma in 1994, when he found a mole on his back. As a phone company lineman for 36 years who worked outdoors on a daily basis, he figured his prolonged exposure to the sun may have put him at high risk for skin cancer. The mole was eventually diagnosed as melanoma and removed by a plastic surgeon. With regular monitoring by his doctor, all was well for many years, until he found another mole in 2011, this time on his neck, which turned out to be a recurrence of his melanoma.
March 7th, 2014 · 1 Comment
By Mayo Clinic
When I arrived at Mayo Clinic in Scottsdale, Ariz., that September day almost five years ago, my care for colon cancer was fractured and really a mess. I had suffered through a second bout of the disease, when the cancer jumped from the colon to the lung. After surgery to bisect the upper lobe of the left lung, I had just embarked on a six-month program of chemotherapy.
A local hospital had bungled the pathology from the original colon surgery in February 2008, discovered only when I went to a facility in Texas for a second opinion. As it turned out, at the time of the original colon resection, a trace of cancer was evident in a lymph node, doctors there discovered. Had my oncologist at the time possessed that information, he would have immediately placed me on a course of chemo. He didn't, and suddenly I had become a Stage IV cancer patient for the worst of reasons: medical error.
Just as bad, the surgeon who performed the original colon surgery did such a poor job sewing up my abdomen that it created an incision hernia. When she fixed the hernia, she told me she had inserted some mesh to pull the area together. That turned out to be false. The hernia surgery had to performed again. This time she demurred and sent me to another surgeon, who did the job properly.
No apology from the doctor or the local hospital has ever been forthcoming.
In the late summer of 2009, the second opinion confirming the spot on my lung, the biopsy, the surgery itself, and my first chemo sessions were reminded me of the times I was given flu shots in the pharmacy of a Safeway. My anxiety was at an untenable level, and as now the CEO of my own health care, I had learned an important lesson: the more doctors, clinics and hospitals involved without access to the same computer records, the greater chance for something to go wrong.