A Little Soapbox

As you may have read in Ryan’s last post, there have been quite a few changes in our lives since May. In the past month and a half, we have gotten married, we’ve moved, I started residency, and he started a new chemotherapy regimen. I’ll go into that last one a little further. As you know, he has been on the XELOX regimen (Xeloda and oxaliplatin) since mid-December. He has clinically been doing quite well, and we were able to fully enjoy both our wedding and honeymoon. However, a few subtle changes had already started to occur: about a month before the wedding, we learned that there were some small changes in the CT of the lungs that were a little concerning but of uncertain cause. A week prior to the wedding, we learned that his tumor markers had jumped up from the 300s back up into the 1000s. The week of the wedding, Ryan had a follow-up CT of the lungs, which showed very small nodules and punctate (hole-y) lesions, but which were still determined to be inconclusive in terms of etiology. We left the office that day somewhat appeased that there didn’t seem to be any significant progression in the disease, but still a bit anxious (at least on my part). We went on to experience the most loving and beautiful day of our entire lives, and then flew to Europe to enjoy 8 days in Italy and Greece. We then flew back on June 1, traveling almost a full 24 hours via Sheremetyevo International Airport in Moscow, and scheduled our next doctor’s appointment.

At this appointment, the situation was revealed to be a bit more serious than previously implied. The jump in the markers was quite significant, there was a fair level of suspicion that the nodules in the lung were likely metastatic disease, and we would not be continuing with the same chemotherapy regimen, as these findings showed progression of the cancer. Instead, our plan would now be to discontinue the Xeloda (he had been off of Oxaliplatin and Avastin for about 3 weeks at this point), and switch gears to another line of therapy: Irinotecan. We would also continue Avastin, and replace Xeloda with fluorouracil (5-FU).

On a personal level, it was a bit jarring to be told that the tumor seemed to have stopped responding as well to the chemotherapy and that we would have to change regimens. I won’t lie, I felt a bit as though we had been a bit caught off guard after being told before the wedding that everything was essentially fine. Transparency in healthcare is of the utmost importance in the care of patients, not only so that patients can be educated about the disease process transpiring in their own bodies, but especially so that patients can practice autonomy in their medical decision-making that is both educated and appropriate to their personal situation. That being said, I have been told that in the care of cancer patients, where the goals of therapy are not just survival and prolongation of life but also quality of life, full transparency about the gravity of the situation is not always the correct answer. That is to say, brutal honestly about the situation may hurt the patient rather than help. And I tend to agree. In this blog, Ryan has consistently posted on the importance of a positive attitude and hope in his fight against cancer. In a disease where the stakes often seem too high to defeat, I believe that the attitude of the fighter can really sway the outcome. You might say that by not revealing every horrific outcome and prognosis, the effect is somewhat of a nosocomial belle indifference, but when it comes to cancer, I think this may be only part of the story. Did we enjoy coming back from vacation to find out that what had been seen in the labs was indeed progression? No. Did we feel a bit defeated when we found out that we would need to switch chemotherapy regimens? Yes. But would we have been any more prepared for this news if we had been told as soon as the results came out, before our wedding, before the honeymoon, before we had to speak of infinite love to each other in front of all of our family and friends? No, absolutely not. If anything, by not drawing out every hard edge of the disease, Ryan’s doctors actually allowed us to experience and fully enjoy the happiest day of our lives. Obviously the ability to determine the appropriateness of softening negative news comes with decades of experience and years of knowing your patients well. But in a time when everyone (including myself), just wants the hard news, wants it straight, and wants it now… it’s good to consider that, at times, a little softness may be more charity than condescension.  

I honestly meant to go into an explanation about Ryan’s new medication regimen in this post, but as I have digressed so thoroughly, I won’t pain anyone with another 3 paragraphs of didactics and will save that treat for next time.

Till then…

-Clover