I live in Los Angeles in California but, as a performer, have had the good fortune to travel and work internationally for the past 50 or so years.
My amyloidosis announced its unwelcome arrival around 2008, if not a little before, when I was in my late 60s, with the manifestation of persistent dark circles around my eyes. When these worsened, with the deep shadows taking on a purple hue, a hospital checkup concluded that I was suffering from multiple myeloma with an amyloidosis association.
Having practiced homeopathic and naturopathic medicine for most of my adult life, my first instinct was to treat this condition by the same means. Initially I had some success, delaying the onset of more severe symptoms. But these inexorably arrived and eventually I was persuaded to undergo chemotherapy at a local hospital in Los Angeles. Put on a regime of Revlimid and Dexamethasone, with occasional doses of Velcade, I began to feel extremely unwell, and was forced to restrict activities. My professional career was slowly put on hold, apart from the occasional recording and recital where my voice showed relentless signs of deterioration. Dark glasses concealed my signature “raccoon eyes” whenever I was out in public, these occasions becoming less and less frequent.
Pat, my wonderfully supportive wife, was indefatigable in trying to ensure that the treatment I was being given was, in fact, in my best interest. She researched online and never stopped questioning, becoming especially concerned when there was little sign of improvement. Eventually, her due diligence was rewarded with an extraordinary stroke of good fortune when she was put in touch with Dr. Robert Kyle of the Mayo Clinic in Minnesota. Dr. Kyle is a legendary pioneer in the field of hematology, heaped with international honors, and still adding his wisdom and kudos to medical conferences worldwide. He and Pat talked by phone and corresponded by email. After having requested her to send him records of my blood and urine tests, Dr. Kyle declared I was not suffering from multiple myeloma, but from amyloidosis of the dominant AL variety. He invited me to come to the Mayo for a thorough check-up, at which his diagnosis of AL amyloidosis was confirmed.
I was given the choice by Dr. Angela Dispenzieri, the brilliant physician supervising my treatment, of continuing with the drug therapy or of undergoing something more radical, a stem cell transplant. As the Mayo had a successful history with these operations, we decided to take this option. In July 2012, I underwent an autologous transplant at the Mayo, using stem cells from my own blood. Fortunately, the operation – my “second birthday” – was very successful and I was soon able to return home with my new, improved immune system.
I now had to be closely monitored, and returned to the Mayo every 100 days for checkups. I began to realize how lucky I was that my amyloidosis had primarily manifested in the soft tissue around my eyes and in the throat. I could see and hear that something was amiss. Amyloidosis can be a silent killer, and I learned of too many cases of patients who suffered a fatal build up of amyloid deposits in critical organs before they could obtain a correct diagnosis.
The numbers from my regular blood and urine analysis continued to improve and I found I could eventually discontinue all medication without any ill effect, but made sure of optimal nutrition and supplements. I gratefully resumed much of the lifestyle we had enjoyed before the onset of my illness. I even participated in two stage performances and was encouraged to find that my voice, which had been severely compromised by the illness, was slowly improving. I was able to travel again and, on one occasion, took advantage of being in London to visit the Royal Free Hospital where Britain’s National Amyloidosis Centre was headquartered. There I was scanned by a machine unique to the hospital and to the world to ascertain my remaining amyloid load, with encouraging results that basically confirmed the Mayo’s optimistic findings.
I began to see more and more that the most useful role I could now play was as a patient who, for the moment, had been reprieved and as someone who had a certain public profile, was to help disseminate knowledge of amyloidosis, this orphan disease now slowly emerging from the shadows of misdiagnosis and mistreatment. I was able to narrate a video about amyloidosis and the several forms in which it manifested, and to participate in events to raise both funds and awareness. As my eyes still displayed bruising under certain stresses, I was particularly interested in research into discovering an antibody that would target amyloid deposits and facilitate their removal. I tried to include these latest findings in a book I completed about my whole amyloidosis experience that now awaits publication.
I am certainly aware that my renewed gift of life cannot be taken for granted and should be devoted to philanthropic ends – hopefully by contributing in some measure to the eventual control and elimination of this medical scourge. Meanwhile, I remain eternally grateful to all the doctors and scientists, the researchers and healers, and the caregivers like my wife Pat, whose devotion and knowledge played an indispensable part in my recovery.
My advice to any newly diagnosed patient is to seek out as many second opinions as possible – amyloidosis is notorious for masquerading as other illnesses. Refuse to take no for an answer, and scrupulously avoid all negativity. I would then purify yourself by adopting a diet of organic food to help detoxify the body and make it more receptive to the healing. Tell yourself that that you are going to meet this medical challenge with complete success, and visualize yourself as completely healed. The mind is powerful medicine!