On May 4, 2022 my husband, Chris, was admitted to UC Davis hospital with COVID and a biliary obstruction. 7 days later the Dr's called me with a tentative diagnosis and I was allowed to then go and quarantine with my husband in his hospital room. I was there to help deliver the devistating news. He has bile duct cancer. In an instant his whole world changed forever. He spent almost a month at UC Davis. My husband endured multiple procedures trying to get him stable. We also had amazing teams of nurses and drs working with him as well. It was decided that we could try and get Chris a liver transplant as his best chance of survival. Our Dr. consulted with a colleague in St Louis and persuaded her to take a look at our case for transplant evaluation. UC Davis doesn't have a transplant program. His tumor was now estimated to be larger than 3cm taking us out of contention for many transplant programs including the Mayo clinic. Chris was discharged Thursday, June 2, early in the evening. Weak and in pain from a biliary drain placement we came home and packed. By Saturday, June 4th, 9:30 am we were on a plane to St Louis Mo for a liver transplant evaluation at Barnes Jewish Hospital. Our evaluation appointments began the following Monday. The Dr's had been coordinating at both hospitals and it was an intense time.
We spent the next 2 weeks in St Louis. I was given a print out with all of our appointment times and locations throughout the hospital. The first 10 days was non-stop testing and Dr evaluations to be placed on the transplant list. The final day of our appointments was a laproscopic surgery as the final step to clear Chris for the transplant list. He had cleared the bone scans, PET scans, anesthesia consult, abdominal CT, stress tests, whole body CT scan, chest and brain CTs, blood work ups, and a dozen or more meetings and appts. This was the last step. 20 minutes in the actual stomach. In and out. Only it didn't turn out to be that simple. Nobody was expecting what came next. The doctors found 2 tiny spots inside his stomach lining. The cancer has metastasized.
So, as a result, Chris is no longer a liver transplant candidate nor a candidate for a partial liver resection to try and remove the cancer. The doctors at Barnes have done all that they can do. Chris got a formal diagnosis of Stage IV metastatic hilar cholangiocarcinoma. He was given a prognosis of approximately one year to live.
While St Louis didn't provide the answers we had hoped, there were so many good and beautiful things that came out of that trip and somehow, through all the pain, it will be a treasured memory.
We arrived back home in Sacramento on Saturday, June 17. We had the first appointment with Dr Kim, Chris's oncologist at the UC Davis cancer center on Wednesday, June 22. The plan was for Chris to start a chemo/radiation treatment as soon as possible for 2 weeks on and 1 week off. But, with the emotional roller coaster we have been on, there was still another surprise in store for us. When we arrived at the appointment the Dr was thrilled tell us that it turns out my husband has a particularly good genetic marker that allows access to immunotherapy treatments. This is a promising development for a stronger prognosis. We won't know for sure for several months how the immunotherapy will work but for now Chris will be forgoing the chemotherapy and radiation at the recommendation of his Dr. and just begin immunotherapy.
This is our story.
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On June 15, after several months of near constant hospital stays and unexpected complications, my beloved husband Chris came home on hospice. The cancer has spread beyond what our Dr’s can do to help. Our hearts are broken. The severity has come on quite suddenly and unexpectedly.
So we find ourselves in the next part of this journey. Chris and I spoke about what this would look like early on. He was always clear he wanted to be here, at home. We are spending these last days together, surrounded by love and support, cherishing each moment. You may wonder what that looks like? Sweetness. Tenderness. Lot’s of Family Feud, Impractical Jokers and Food Network to name a few. Loads of new beverage requests and taste testing - Chris is now only able to take fluids for comfort. Comfort care. Good conversations. Music. Most importantly Love.
Out of respect for my husband and his journey I pulled back with our updates for quiet awhile. Once he had returned to work I wanted to give him space to have some normalcy and then honestly... it just came more important to be living in the moments rather than trying to curate them or write about them later.
But I knew that I needed to write this. There are so many of you who have been wondering how my husband is, following along on his journey, hoping and praying for a cure. We have felt all the love and we are forever grateful.
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