Last Thursday my labs showed my liver enzymes were even higher and I was having abdominal pain. I was concerned because the oncologist had said if the levels got any higher I would have to skip chemo or reduce the dose. I didn’t want to do that if I didn’t have to, but I also don’t want to injure my liver. 

Last Friday: My chemo nurse messaged the doctor through the computer system regarding my ALT (I’m told they are not allowed to call him on the phone 🙄). The doctor, my oncologist, wrote back that I should have the full dose regardless of my enzymes and he doesn’t think my abdominal pain is related to my liver. I was very confused, I didn’t understand. The oncologist was rounding at the hospital and couldn’t speak with me. I asked the nurse why this was a big deal last week, but this week, when my levels are even higher, it’s no big deal. She didn’t know either. I chose to skip chemo based on the previous discussion I had with the doc. I figured maybe he got me confused with someone else or had forgotten our conversation. The nurses encouraged me to call my primary to discuss since the oncologist wasn’t available to me.

Over the weekend, I found that studies show that taxol can cause liver damage and failure if the enzymes are in the 1000’s, mine are still low 100’s. ALT is specific to liver, whereas AST is found in a variety of tissues. I’m angry with myself that I blindly believed my body was in trouble. My abd pain has been tolerable. I have been told two different things by this oncologist (that it was bad to have a high ALT and I needed to have a smaller or no dose, then it didn’t matter and I could have the full dose). I want to understand but he is offended or annoyed when I question his treatment plan. This isn’t the first time he’s talked in circles and left my questions unanswered. I’m disappointed that I didn’t advocate for myself, that I choose to skip chemo without speaking with him or another covering provider in that moment.

Yesterday (Thursday): labs drawn, no abdominal pain since Sunday. I saw the nurse practitioner. She immediately brought up my liver enzymes and told me, at these levels, it is not an issue. She told me my abdominal pain is acid reflux—to which I disagreed completely. The pain councides with treatment and feels nothing like heartburn ever has felt before. I asked her why my dose was reduced and he gave me the option to skip chemo weeks before. She said she didn’t know. The conversation progressed and I gave her an earfull. The oncologist and I do not communicate well. I want more information than what I’m being given. I felt my concern was ignored. She told me I was free to change my care team. Duly noted.

I felt like I had just experienced medical gaslighting, something I have laughed at and brushed off previously. Oops.

And so, I plan to stay six/seven more weeks with this doctor. I’ll finish chemo here as Dr. Moline suggested. Then I will consult, again, with CCNW in Spokane to hopefully complete my cancer journey.

Warning:  Unsolicited advice…