About a year ago I wrote a blog called “Sugarcoating”. The aim of which was to enforce that talking about cancer should not be taboo. I’m going to take my own advice and not sugarcoat with you.
Recently, I shared on my personal Facebook that my family had to cancel our winter vacation to Puerto Rico. Then, during the time we were supposed to be in Puerto Rico, I ended up in the hospital for a night and made light of being in the hospital penthouse over vacation. Many friends reached out expressing apologies for my trip getting cancelled, but friends, maybe I’ve been sugarcoating. It’s not about the vacation. It’s that I’m getting weaker and sicker and my liver may be failing.
If I always laid out these cold facts, it would be hard to be positive, so I try to find the humor or the silver lining. But, here’s the non-sugarcoated version. For some time now, treatments have not been working. Recently, I’ve been extremely tired and weak to the point where it feels burdensome and exhausting to reply to the sweet texts, messages, and posts I’ve been receiving. I’ve begun in-home physical therapy to build up strength due to weakness from the cancer.
My liver hasn’t been behaving. Bilirubin occurs normally when part of your red blood cells break down, then your liver takes the bilirubin and changes its chemical makeup so it passes through you. High bilirubin levels are a sign that the liver isn’t breaking down waste properly and clearing the bilirubin from your blood. Recently, the doctors at Dana-Farber have been wanting to monitor my bilirubin because my recent bloodwork showed the numbers creeping up. I’ve had an ultrasound and MRI to rule out a blockage and my overnight hospital stay was to monitor and run tests on the liver. The doctors have taken me off chemo because they think the chemo may be the culprit for the rising bilirubin numbers. We will get a more definite answer once the doctors can evaluate if it is the treatment.
When I was first diagnosed with MBC, there was so many wonderful people reaching out to me and that was how I started sharing this journey on Facebook and this blog. I never meant it to be the whole story of what’s going on, but to share my thoughts about different treatments, how to talk to your kids about Cancer, genetic testing, travelling with a terminal illness, etc. I don’t post or blog about everything because cancer affects everything and that would be a stream of conscience, not a blog.
I don’t share with you all the day-to-day of cancers because it’s so much and depressing. The day when I had to sit down after showering because it took too much to stand, the next day when I slept for 17 hours because my liver was causing weakness, the next day when my stomach was all kinds of unpleasant and I was too nauseous to stomach food, the next day when it took too much energy to take Wally to the bathroom, the next day when I cried because treatments aren’t working, etc. I’ve asked Mark, Michaela, and Max to do a lot more than I wish I had to. To be honest with you all, I had Michaela write this because I’m just too weak to even write on Facebook.
I chose to start this blog to share my thoughts with all of you, so this is the non-sugarcoated version. This is cancer. This is what has happened to so many wonderful people I know or have met along the way. Many friends have passed recently and it makes me plain mad and sad. This is the ugly side of cancer, not the silver lining-hopeful side. However, I still remain hopeful Dr. M has something up her sleeve to make my liver behave. I still believe in positivity and finding the good and silver-linings. But during these past few days, I didn’t care about my vacation, I care about my liver and I found it time to be really honest.