Mayo Recap

We had our virtual appoint with Dr. Thiels from the Mayo on January 8th. This was a much anticipated appointment - would this be path toward a No Evidence of Disease (NED) life for Phillip? Would our anxiety (ok, my anxiety), be put to ease because science and expertise are in front of us? My Type A personality could not prepare for this appointment because I had no idea what direction the meeting would go.

It became clear as Dr. Thiels began talking that surgery was off the table again. My heart dropped, sinking at the weight of another closed door. We quietly listened as he explained the spread of Phillip's disease and the predicaments a surgical team would be faced with on an operating table.

While this conversation was disheartening, I appreciated Dr. Thiels time and thorough explanation of why Phillip is not a surgical candidate. In a nutshell, his liver has tumors across the entire organ, and this, coupled with hard-hitting chemo, has resulted in liver damage. Presently, any surgery would place additional strain on Phillip’s liver, and the risk of liver failure makes it an unwise option. Given that he has been tolerating chemotherapy well and his body is responding positively, the potential benefits of surgery do not outweigh the risks at this juncture.

I inquired about alternative procedures to surgery, such as HIPEC (Hyperthermic Intraperitoneal Chemotherapy), and was informed once more that it would strain his body. Radiation was mentioned, and we were advised that it affects a broad area and could also impact his liver health. Dr. Thiels reiterated what the Mayo Clinic had told us last July, we are currently doing everything right.

While this all deflated me, Dr. Thiels also went on to say that Phillip is young and healthy and we need to consider this like a chronic disease, similar to diabetes. It requires routine monitoring and it is possible Phillip could live many years with this "condition." This mindset is hopeful and promising and if I can overthink the worst, why can't I overthink the best?

Our conversation with Dr. Thiels went on to discuss the potential for clinical trials in the future. Science is constantly evolving. However, Dr. Thiels explained that due to the current Administration’s gutting of funding from the National Institutes of Health (“NIH”), progress in cancer research and clinical trials has stalled. I cannot even put into words how angry this makes me—and while I won’t get political here—it is devastating to know that lifesaving momentum has been lost for no reason other than the pathetic orange man deemed cancer research "wasteful" spending. What the current administration must have overlooked is that more than 99% of all drugs approved by the FDA between 2010 and 2019 relied on NIH-funded research. New therapies extend lives, and the reduction in clinical trials is directly impacting Phillip and other patients with chronic illnesses who are placing hope in an institution increasingly unable to deliver breakthroughs. It makes me physically ill to think about.

After we finished our appointment, I began sobbing to Phillip, “This isn’t how our story is supposed to be.” In his calm, steady way, he looked at me and said, “Kell, I’m not going anywhere. I’m too stubborn for that—you know it.” I told him he better not go anywhere, because I can’t do this life without him. He also reminded me, "you knew this mountain was going to be hard, we can't get all the way to the final peak just yet, its going to take time."

He went on to say, “I don’t know what you heard in that appointment, but everything the doctor said was good. We are doing everything right.” And that is why I love him. He finds the positive in every situation, and I truly believe that a positive mindset through a cancer journey is a powerful healing force.

Phillip had maintenance chemo this past Monday and everything about it was uneventful. He has started disconnecting his FOLFORI pump at home on Wednesdays, which saves him a drive to the clinic. This has resulted in us having a "biohazard" cabinet in our bathroom where the used chemo pumps are stored until we bring them back to the clinic for the next cycle.

January has felt months long, and as we process our conversation with the Mayo, we are also grappling with the horrors unfolding in Minneapolis. It is hard to believe, and it adds another layer of heaviness to life. Yet even amid this weight, life continues to move forward, bringing small glimmers of hope and resilience that remind us we are not powerless.

Next week, we are escaping reality and heading on a Caribbean cruise with Phillip’s family. Sunshine, laughter, and relaxation will be had, and we are eagerly looking forward to the healing power of all three.