was made after becoming ill enough to receive a liver transplant from my liver failure secondary to my Primary Sclerosing Cholangits [PSC]. I was told by the Massachusetts General Hospital Oncologists that I had 14-20 months to 5 years, emphasizing 5 years was a very low probability in my case.
©Eric Fritz
‘Living with Dying’ This is a little of my story about living with the unknown, the inevitable; death. Every day is a choice to simply get up and join the world. Which some days are harder than others. The challenges include not only the physical pain and fatigue, but mental and emotional exhaustion, and feeling overwhelmed. The loss of control is in itself debilitating. I am very realistic with my disease, knowing the end is inevitable. The scariest thing is living with this disease and having children. I can’t control what happens after death; fearing that my memory will fade with them over time. I live with Stage IV Liver Cancer; Intrahepatic Cholangiocarcinoma. The disease and prognosis are very grave. Intrahepatic cholangiocarcinoma is a cancer that develops in the cells within the bile ducts; both inside and outside the liver. As a rapidly growing and very illusive process, my diagnosis was very difficult to make. My diagnosis
I have taken the last year and a half to strengthen my relationships with those closest to me. I have been able to incredibly affect my relationship with the kids in such a way that I never thought was possible. For those that know me, I frequently say, ‘they are my world.’ This is what drives me every day. Without them I think my fight would be much different. I also have built a great relationship with my primary caregiver. She has stood by me throughout this all, been there for all procedures, assisted me out of the tub, off the toilet and up stairs when I could not do so on my own. She is incredibly strong, passionate and dedicated. Cancer Isolation is real. Many people do not know what to say, many will never understand. Many people are in denial and cannot discuss the disease causing the social isolation. Finding someone that you can connect with that is also battling cancer that can understand and listen is so powerful and healing. Throughout the years I have heard, ‘I don’t know what to say, so I don’t say anything to you,’ ‘I can’t deal with it,’ ’what can I say, I know nothing will make it better,’ ‘it’s easier for me to not talk about it.’ The fact is, I am the same person, extremely charming and hilariously funny! Ha! No, actually, I don’t need anyone to try to make it
better, or be worried about saying the wrong thing. I am not always interested in discussing the disease or my current condition. One of the most frequently asked questions is, ‘how are you?’ I know it’s the natural and safe question. Which is a very loaded question, I often reply ‘fine’ or ‘okay’ because it’s easier then getting into it all and I find there is a fear of what I will say. If you’re not ready to hear the truth, I understand, please just don’t ask. ‘Living with dying’; means living with me. Include, invite and involve me to do things. [coffee, lunch, etc] I may not always feel up to going, however I would be more than happy to, when possible. Most days, I don’t need or want to discuss the disease. A healthy distraction makes such a difference. _____________________________________