It came out of the blue, though we now realize the symptoms of the disease had been building for months, if not years. At the time he was diagnosed in late November 2014, we had three grown children living on their own and 30 plus years of marriage. It was supposed to be the beginning of "our" time - until everything changed in an instant.
It was Thanksgiving and instead of discussing how we were going to cook the turkey(s) we were telling our children and family that Doug had a disease no one had ever heard of or could even pronounce. We warned them not to Google it, because most of the information is gloomy.
Amyloidosis (pronounced, am-uh-loy-DO-sis) is a blood disease that causes misshaped amyloid proteins to build up in your body around vital organs. In my husband's case, it predominantly attacked his kidneys leaving him with swelling, exhaustion, and an irregular heart beat among other symptoms. It quickly leads to life threatening organ failure it not stopped or reversed. Because it is so rare, people often visit 4 or more doctors until they are correctly diagnosed.
THE TREATMENT can be HARSH...CHEMOTHERAPY generally... AND THEN IF THE PATIENT has a strong enough heart AND is WILLING, A STEM CELL TRANSPLANT.
Our oncologist, Dr. Heather Landau at Memorial Sloan Kettering is an expert when it comes to treating Amyloidosis. Her patients, like snowflakes (no two are alike), and her attitude always positive and hopeful.
In the months ahead, I missed many weeks of work at WABC-TV- but I always felt the presence of my colleagues and my family and friends as we went through the grueling chemo and stem cell transplant process.
During the actual transplant, Doug, got a virus and was hospitalized in ICU at MSK- those were scary times, especially when he didn't remember the day or year or who was president. But over weeks his strength slowly returned and we went home. Down the road, and because he had a compromised immune system, he got sick again and lost what little kidney function remained. He was on dialysis for four months when a family friend, or family "angel" came to us offering her kidney. He underwent a kidney transplant and now is much stronger and doing very well.
While there is no cure for Amyloidosis, he has had the best possible outcome from his treatments and we look forward to may more Thanksgivings together to come.
People ask, how did you get through it - keep in mind during all of this we also had our son's accident which is detailed on my Facebook page. The answer is, you don't do it alone. It takes a village when it comes to treating cancer and other life-threatening diseases.
Many people, our "angels", had our backs during the weeks spent in hospitals and the recovery time at home. We have always been grateful for all the messages and shows of support on our Facebook pages, often from people who didn't even know but were kind enough to offer words of support. We also loved hearing from others who had been in our shoes, dealing with a stem cell or kidney transplant. We learned what we already knew, that we were not alone with what we were dealing with.
This month, I am humbled to be honored by the American Cancer Society along with our wonderful oncologist, Dr. Heather Landau, as Mothers of the Year.
It gives us a chance to support a special place called Hope Lodge. We did not stay there, but thousands undergoing cancer treatment have. It's a free place to stay in New York City both for patients and caregivers... a place where you can feel safe and supported.
People come from all over the nation and indeed from all over the world to receive the best in the world health care that we in NY are fortunate to have. Dealing with cancer is tough enough for caregivers without having to tackle the problems of housing and the city of NY.
Hope Lodge provides those people an oasis in their time of need. As someone who has had to be a caregiver to a seriously ill patient, the support of people and places like Hope Lodge make the unwanted journey bearable.
Thank you all for your support of the wonderful institution that is our New York City Hope Lodge.
Doug is currently in remission, but there is still no cure for Amyloidosis.