I have been a healthy person my whole life. I never drank alcohol or smoked, and I had a good diet. In 2004, I began to have some questionable numbers on blood work, but my primary doctor could never really tell what was going on. My knees shook when I was referred to a hematologist and oncologist in 2010. I was given a diagnosis of Monoclonal gammopathy of undetermined significance (MGUS). I was told that I had an indolent lymphoma that may or may not develop, and that I should “go on living” and we would “watch and wait.”
In early May 2019, I was in for the shock of my life when I began to feel unwell. After being hospitalized for what I thought were kidney issues, I was given the diagnosis that I had Waldenstrom macroglobulinemia (WD), a very rare type of lymphoma. My health was very critical because the WD had attacked my kidneys.
I was told that I needed to begin chemotherapy immediately, and doctors would try to stop any further damage to my kidneys. This turned my family’s life upside down. I live each day in fear and dread, and I pray that I can recover. I want to be able to see my two sons finish growing up, and to live to see my wife and myself as grandparents one day.
Because I am at such a high risk for COVID-19 from my disease and from having to be on kidney dialysis for three months, I am only able to leave my house for chemo treatments. My wife and children must take extraordinary measures to keep me safe from any possible exposure to this dreadful virus. My sons must do virtual school, and my older son cannot work outside the house while home from college. My wife applied for a medical exemption at her job, and was granted a temporary telework status, because she cannot risk possible exposure.
The stress from this pandemic has negatively affected me; I am constantly afraid of being exposed and having my improving health be set back. My nephrologist tells me on every telehealth appointment that I am at the highest risk for catching COVID because my immune system is at the lowest possible levels. I am told that having as little stress as possible will reduce burdens on my immune system, which will help my health overall. I have read that stress can kill. I’m already fighting for my life against this disease, so having less stress to deal with strengthens my mind and body.
September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of the rare cancer community – learn more.
