Hello everyone, aside from my first post, this was my most hardest post to write, because with it comes the most difficult news.
Last time I shared, I was hoping to get onto a clinical trial, but my liver numbers were too elevated. I drank lots of water, retook the test on Friday 9/16, and still had no luck as my numbers (AST and ALT) although significantly improved, were still not within threshold.
Background - Sunday 9/18
Morning - Severe Shortness of Breath: Over the weekend, the hydration continued, but on Sunday I was severely short of breath. I was at church, in the back, and had to step outside because I was feeling extremely dizzy. Even leaning against the column outside with the breeze I was close to passing out, which was difficult to understand because I hadn't done anything remotely intense. It took tremendous effort and a very slow pace just to get back to the car. This was the day before I was supposed to take the test again to get on the clinical trial. I was thinking to myself, "Even if I get on the trial, how will this fix my shortness of breath?"
Evening - Jaundice and Lung Blood Clot: After watching the (horrible) Seahawks game, while riding in the passenger seat because I was still dizzy and short of breath, I looked in the mirror and discovered my eyes were turning yellow, a sign of jaundice and liver failure. I called the Fellow to consult with whether I should go into the ER all things considered, and because I was also coughing up blood on that previous Thursday, they wanted me to get checked out to verify I didn't have a blood clot in my lungs which may be a cause of the shortness of breath.
Night - Emergency Room: We arrived at UW ER Sunday night around 9pm. They provided me with some oxygen, and ran some tests. I requested they test my liver function so I wouldn't have to go into SCCA in the morning, which they did, along with doing another CT scan. The CT scan came back okay with no blood clot in the lungs, and my condition improved after being on the oxygen. They released me, and shared my results with SCCA, suggesting I call them in the morning to find the results.
Seattle Cancer Care Alliance Visit - Monday 9/19
Phone Call With The Nurse: I called my nurse at SCCA to inform her of what happened over the weekend, but she was well aware of the events, as the UW ER sent them a note. My nurse said that they did get the test results back, and they wanted me to come in to meet with my Oncologist in the afternoon, that I don't need to get a blood draw, and to make sure to bring my wife with me to the appointment.
This set off a number of red flags, especially the fact that I'll be meeting with my oncologist on a Monday, because he does not have clinic on Mondays, and it's never a good sign when they say to make sure that your wife is with you. Looking back over the past week, I knew my body was deteriorating, and had even looked up liver failure a number of times.
Meeting with Oncologist: We walk into SCCA around 1:45pm and my Oncologist arrives at the same time through the front doors, confirming that he still does not have clinic on Mondays, and we ride the elevators up quietly together. We walk into the room and he later enters to give me the news.
While the liver numbers that were originally elevated preventing me from getting on the clinical trial are now within acceptable range, another much more critical number is now elevated beyond normal, my Bilirubin. This means my liver is no longer functioning at a safe level, and any introduction of chemicals through clinical trials or even standard chemo will do more harm than good. This is because the liver is required to filter out the toxins that would be poisonous to the body that is received in the chemo, but if the liver can't do that, the unfiltered toxins will end up causing more problems than benefits.
Hospice Care: After my doctor told me my liver was no longer functioning, I knew what he was going to say next and I dreaded the moment that this would come. I always expected this time would come, but was hoping it wouldn't be until much later.
My doctor said that this was now the time to be focusing on the quality of my remaining life, and the best way to do that was through Hospice Care. Hospice Care was founded by Filipino-American Dr. Josefina Magno who dealt with many cancer deaths in her family including her husband and son. Hospice focuses on comfort for my last few weeks and days, by providing care for me at home, and medications to keep me at ease. It includes a team consisting of a social worker, nurse, nurse's assistant, chaplain, and other services that come to the house to help care for me. Although I wasn't surprised that this is the situation I would end up, I was saddened that it happened much sooner than I had hoped.
Prognosis and Disease Progression
Prognosis: I asked my doctor the standard difficult question that I always ask. The doctor said that given my current condition and liver progression over the past few weeks, he would be surprised if I lasted more than a couple months, and the fact is my time remaining is likely closer to one month.
Disease Progression: As my liver continues to shut down, my body and eyes will become more yellow from the bile. As the toxins increase, I may become irritable, extremely bloated, agitated, confused, itchy, and once it gets to a certain level where the medicines cannot extract the ammonia from my body, I will fall into a coma. Luckily, my doctor said that I will pass peacefully after falling into the coma, so the transition will at least be easy.
I'm compiling my final thoughts to post and will share them later. Again, although this is disappointing news, I will continue to remain positive, to hopeful, and strong, and I hope you do too. Thanks again for reading, and I wish you all the best.