I’m not dead yet, and I’m not typing this update from hospice. We had a productive visit in Iowa City on Monday. Dr. M actually had four clinical trial options for me to consider. After the visit at Mayo Clinic last week, I’ve been under the impression that we don’t have many options left. Dr. M thinks we should start with this clinical trial. It’s not a chemotherapy. It’s six pills I have to take each day once the trial starts. Sounds like there is about a week I’ll need to be in Iowa City when I begin the trial for several blood tests. I left Iowa City on Monday evening feeling hopeful, but uneasy about the fact that we really have nothing left proven to fight this thing. The clinical trial I’m enrolling in at the University of Iowa worked great for mice, but it hasn’t been proven to work in humans yet. Before we leave, Dr. M reassures me that while my scan from last week was concerning, I’m probably not heading to hospice soon.
I scheduled a virtual visit today with Dr. C at Mayo clinic. I think she’s my favorite one of the whole bunch, and I wanted to hear her thoughts on the situation. Dr. C doesn’t think we’ve given immunotherapy or the cancer fighting electric hat enough time to work yet. She agrees the scans are concerning, but also reassures me that I am a long ways away from going to hospice. I hope she’s right. Dr. C encourages me to do the clinical trial at the University of Iowa. She explains some of the other tools they have in their arsenal to keep fighting, including continuing immunotherapy and the electric hat. I made myself very clear that I’m not ready to give up, and that I want to keep treating the disease as long as we can.
I’m learning so much through this crazy cancer adventure. The landscape is constantly changing. Time isn’t guaranteed for any of us. People don’t always know what to say or how to help me. I don’t always know how to ask for help. Awkward conversations about death are awkward for everyone – even for doctors who deliver a lot of bad news. I’m learning that one doctor can tell me bad news and make me feel horrible. Another doctor can tell me the same bad news and offer me much more positive reassurance. In the end, bad news is bad news. But moving forward, I’m going to stick with the doctors who give me the most hope. And I’m going to always seek a 2nd opinion when something just doesn’t feel right.
For now, we’re moving forward with the clinical trial in Iowa City. My next scan is at the University of Iowa the week of Feb 14th. I’m excited for the trips back to Iowa City. I lived there back in 2005 with some friends, and I lived there in 2010 when I was first treated for brain cancer. I love Iowa City and made wonderful friends and fond memories in my short time living there. When I lived there in 2005, my friend Josh had a sunroof in his car. Some nights ater the bars closed at 2AM, we’d drive around downtown. I’d pop my head through Josh’s sunroof and throw muffins at drunk college kids and scream “I’m the muffin man!” Imagine yourself stumbling out of a bar and getting pelted with a muffin by the muffin man himself? Would you be upset or impressed? I’m surprised we didn’t get our butts kicked.
I’ve been told by my care team that surgery is not an option at this point. But I want to hear this from an actual surgeon. Tomorrow, I have a virtual appointment with Dr. B – the australian guy who sawed my head open in 2019. It’ll likely be him telling me that surgery is not an option, but what do I have to lose by asking him? I’ve already met my yearly health insurance deductible. And after all, does he know that I’m the muffin man?
The last week has been horrible, but the last few days have offered us some glimpses of hope and plenty of laughs with friends. We’ll take what we can get!