Question for Bernie:
I was diagnosed with an extremely rare liver cancer 14 months ago. It is an Acinar Cell Tumor. Little is known about this type of cancer since it is normally seen in the pancreas. I had two large tumors that were crushing my portal vein. No mets anywhere else in my body. I had no idea this was going on until one day last November my skin and eyes turned yellow and my world was turned upside down. I had stents placed, did 2 cycles of chemo, 4 rounds each, and started 6 weeks of radiation in June. Things were looking good initially but my scan last week has revealed a few small lesions are starting to show up on the other side of my liver.
O.K. that is the cancer side of the story. But most importantly here is my side of the story. I am 53 years old, a wife, a mother and dog mom. My greatest joy in life is my children. My greatest teachings have come from my grandparents. I am Italian and that means family and loved ones are always around. I am not ready to give this up to cancer. I am strong as an ox and can do the work of most men. I walk and hike almost every day, I don’t look any different since my chemo regimen didn’t have me lose my hair. My skin is not yellow anymore. I am a very private person and haven’t shared this with too many people outside of my immediate family. My closest friends don’t even know. The toughest part is not the physical stuff. (Yes, it has been a challenge to say the least; 7 stent change procedures in the last year, a horrific bout of cholangitis, chemo and radiation effects that made me nauseated for 9 months straight. Got Covid, etc, etc.) The toughest part is the mental. Looking across the dinner table and thinking I won’t be here for my son’s high school graduation, my daughter’s prom or my oldest graduating from Nursing School. The thoughts that my husband will have to take this on himself rip me apart.
I just read your book Love, Medicine and Miracles and you have given me a renewed hope in my future. I have had a deep feeling all along that there has to be another component to this journey that I am on. My intuition is usually right and I have felt it is time to seek out a new “care team”. Find an oncologist that is more than just matter of fact and wants to understand me as a person. It is not a quick and easy process. I know with my determination I can find it. It’s keeping the bad thoughts from taking me down that are tough as I proceed on my journey. I’m scared to death of course and I don’t want a life of constant hospital stays, new chemo and radiation protocols, endless time waiting for scan results and people saying they are so sorry. Your book helped me see just how strong the mind/body connection is and I believe I can be one of these people. I live in the Philadelphia suburbs but I would come up to one of your group meetings. I have seen ads for cancer support groups around here but I have no interest in swapping war stories about the disease. That depresses me more.
I guess what I am asking for is some positivity. My grandmother died at 102. My Dad is 81 and is more active than me, my Mom is 76 and is still beautiful, and all of my aunts and uncles have lived into their 80’s and 90’s despite bouts with cancers. I come from “good stock” so why can’t I? I’m not delusional about this type of cancer. Bile duct cancers are tough and with so little known about this cell type it’s all a crap shoot. But in your years of experience you must have seen way worse than this that went into remission? I will take any advice you would be willing to share. Any wisdom you may be able shed would be appreciated. With God with me on this journey I believe I can do it.
Thank you for your time.
Follow your heart and not your mind in finding a new team or anything else.
You can draw some pictures with crayons for me to help you decide things and guide you–if you want to, let me know and we can discuss what to draw.
Your emotions are the key ~ give your body the message of your intention to live.
Go to my web site www.berniesiegelmd,com and, on the opening page, you will find phone numbers for two groups you can call into, so connect and we will move on from there.