Sorry, But We Can't

     At the beginning of February 2019, the newest scans showed a promising response to treatment. Dr. Javle was pleased with the progress Co had made and he put us back in contact with the surgical team. We were headed home to College Station after our second full day of MDA appointments and chemo when we received the call. Trips to MDA are never quick. It's a 2-hour drive one way, and one to two appointments can drag out to eight or nine hours. We were whooped, but Dr. Vauthey wanted to see us the following day to discuss "good news". We agreed and woke up at 4am the following morning to trek back down 290.
     Dr. Vauthey did have good news. He was happy with the tumor's response to treatment and wanted to schedule Cody for surgery to resect the tumor. FINALLY! The day we had been patiently waiting for was within reach! We were told that chemo would no longer be necessary and we had completed his last treatment. HECK YES. The PA, Steve, came in to discuss details. Cody's surgery was scheduled for February 28, just three weeks away! Steve explained what exactly would be taken out, how long the surgery would take, and how long we would be in the hospital, etc. You can see his notes pictured here, I saved it to frame after this was all said and done. We were so excited. All those months of chemo, the tears, the fights, the feelings of hopelessness all diminished to a dull ache instead of a sharp, searing pain.

     Unfortunately, this feeling was short-lived. Three days after our meeting with the team, Dr. Vauthey called Cody while I was at work. Co called me immediately after and I could instantly tell by his voice that something was very wrong. I left work and found him with his head in his hands at the kitchen table, shoulders shaking. Dr. Vauthey called to say he was sorry, but he couldn't perform the resection surgery for Cody. After having several radiologists review the scans, it was determined that Cody has Primary Sclerosing Cholangitis (PSC). The physicians were struggling with the fact that the tumor had shrunk significantly, but the bile ducts remained dilated and scarred. Meaning, if they removed the left lobe of the liver and the tumor, the remaining right side of the liver would not be conducive with life. His bile ducts are too scarred and have suffered too much damage to survive alone.

     Just like that, our lives came crashing down for the second time. We both slumped at the kitchen table and wept for a long time that day. What the hell are we supposed to do now? Chemo is killing his quality of life, we can't do chemo forever!! This is so unfair, we had a DATE! We had a surgery date set! I had my happy, uplifting, good news facebook update typed and waiting to post! How can they keep picking us up and dropping us like this? We can't keep doing this, we can't take much more! These are the best oncologists in the world, what do they mean they can't help us?! I just want my happy, healthy, hairy husband back, is that REALLY too much to ask? Why can't we just FIX THIS ALREADY?!

      My heart is racing as I type and relive this memory. The lump in my throat slowly creeps back in and I could scream with frustration all over again. I still don't have answers to any of those questions, I probably never will.

     It's taken me a long time to get to a point where I can openly share this. I have refrained from posting updates on our situation because I didn't have good news to share. The highs and lows of the past couple of months have been almost unbearable. I feel guilty about sharing bad news and dragging others into this rollercoaster of frustration and disappointment. However, I've realized I can't weather this storm alone, and if someone out there can walk away feeling better about their situation after reading this, I'm happy to share our story.


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