On May 25 2016, my mom Kathie was diagnosed with incurable, inoperable, metastatic stage 4 cholangiocarcinoma. It is a very rare form of cancer in the liver/bile ducts. She was informed that specifically she had a tumor the size of a baseball on her liver and in her bile ducts and wrapped around the inferior vena cava (main artery to her heart). Because of the location and size of the cancer it was/is too risky to operate and remove. She was also informed that there were signs of cancer in other locations, including nodules in her lungs. She was given the option to at least try chemo (trial and error since there is no known cure for this) in hopes for the cancer to shrink to maybe make it possible to have surgery someday "soon"... or to just focus on quality of life for the time that she had left, which, if she then chose not to do any treatment at all, she would have maybe 6 months to a year. Because of the severity and rarity of her type of cancer there still was/is no guarantee that any chemo treatment would in fact shrink the cancer in hopes to be able to operate someday. Mom, being the strong fighter that she is, chose to at least give chemo a try. She was NOT giving up! She has gone through one full round of chemo and a partial round of another (different) chemo treatment. It has now been over 4 months since being diagnosed and it is with a very heavy heart that I report that not only has the chemo not worked to shrink the cancer but instead the cancer has increased in size and has spread even more. She now has absesses/infections in the liver and bile ducts, which make it so that she cannot have anymore chemo anytime soon. She also has 2 blood clots- one is a tumor clot in the portal vein coming off of the liver and the other is in the hepatic vein on the right side. These clots cannot be aggressively treated due to her risk for bleeding too much from the blood-thinning anticoagulants needed.
Mom has been in severe pain now for a long time and her quality of life for the past few weeks has not been good. Her team of doctors and healthcare providers have all just told us that the best thing we can do now is to focus on pain management and quality of life. The big question is how much time does she have left? If the cancer keeps growing and spreading at the rate it has been then the answer is a month or less, maybe 2. If a miracle happens then she could have 3-6 months but the oncologist has made it clear that it isnt likely. NOBODY, especially my strong independent mom, wants to hear this or accept this. But this is the reality and we need to all come to grips with it and try to stay as positive and cooperatice and supportive as we all possibly can.
My mom Kathie is receiving remarkable care at The University of Minnesota East Bank campus in Minneapolis. The support from friends and family has been truly overwhelming. I speak for my mom and myself and my sister and our immediate family when I say how much we truly appreciate all of your thoughts, well wishes, prayers, offers to help, messages, phone calls, and the love we have received from all of you. My job and my goal is to handle everything so that mom can focus on pain management and living the rest of her days as comfortable as possible. She has appointed me her "family spokesperson" and health care agent so if I seem rude or unavailable at times, please understand that I don't mean anything by it at all and that I am only ALWAYS trying to act in my mom's best interest. I am doing the best I can to keep level-headed despite the strong emotion involved. I have to do my job(s) well so that she can do her job, which is accepting the reality of all of this and taking care of herself the best she can.
If you would like to visit my mom Kathie please call or text message me on my cell phone (763-438-2282) to arrange for an appropriate time. I will coordinate with her nursing schedule, work around planned visits from others, and her overall capacity for interactions based on what she tells me and how she is feeling and doing. I ask that everyone avoid calling her directly for ANY reason other than to offer her words of love and encouragement. All questions, comments, update requests, and scheduling should be directed towards me. If you are sick, have recently been sick, or feel like you might be getting sick, unfortunately we have to respectfully ask that you stay home and share your love with my mom via telephone or this website. For those of you who wish to send a "get well" card or anything else via postal mail, please send to 20826 Polk St NE, East Bethel MN 55011.
Thanks again to all of you for your thoughts and prayers. We are truly blessed to have such an incredible network of support. My mom needs our love now more than ever.
Many many thanks, Jeni Roberts Benny 763-438-2282 (cell)