Prognosis

We knew from the pain that things weren’t fine, but we had every reason to believe you would recover.

No one ever said anything about dying. The doctors talked about the cancer being aggressive, and so we’d treat it aggressively. They told you how you were so young, and they had to be sure to get all the cancer, which might mean the drugs and surgeries would be more severe than they would for an older person. Side effects were discussed at length. The scary go-to-the-hospital ones were highlighted. Risks of surgery were discussed, but even more focus was put on recovery.

I learned so much during those months. I read entire books. I read journal articles, papers, summaries, forum posts, anything I could get my hands on related to cancer. Whenever I found a post from someone young who’d survived squamous cell carcinoma, I rejoiced. When I found ones with a negative outcome, I pretended to have never seen them. I learned how chemotherapy works. I learned how your specific drugs were used in concert to shrink and kill tongue cancer. I learned how immunotherapy works, and how it would increase your chance of event free survival. I learned how targeted therapy works, and I understood why they decided to use it when your tumor seemingly grew during treatment.

I learned about surgery, and why surgery was necessary for any oral cancer if the patient was to survive. I learned about techniques, read more papers, looked at photos, and I looked into your team. I read about their accomplishments, research, areas of interest. I felt safe. I felt like you were being treated by the best of the best. I still feel that way, and that’s what makes it even more fucked up that you’re not here anymore.

We both learned about how important attitude was to a cancer patient’s prognosis. The entire time, you were so sunny and even on the days you could barely open your eyes, you never rated your mood below a 2 out of 5. Usually it was a 3 or 4. I was so tickled with how you kept data on everything, from the 40 plus pills you took daily during chemo to every single side effect and symptom. Your app even had a “wrapped” at the end of the year, proclaiming you a “contented capybara, calm, happy, and grateful” which is unbelievably accurate. You found a therapist you really vibed with and talked to her about your feelings, your fears, and ultimately your goals once you were cancer free.

Even with all the twists and turns, the constant visits, you never gave up hope. When the first surgery wasn’t successful you barely had time to register that information before you were being wheeled back for the second. When that one wasn’t successful either you were not stoked but you accepted it. When things looked dicey after number three you were exhausted and didn’t know what to do. But you shared with everyone how you felt, and you started to improve. I printed a dozen photos to hang in your room and hoped they would remind you of the strength you already had.

We got the all clear the day before you crossed over. They finally told us you were healing well. The shortness of breath was just something we’d figure out and treat. Whatever it was, it was treatable with medication. Until it wasn’t.

I don’t know if I will ever be able to get past the unfairness of it all. You were everyone’s favorite, called a “fan favorite” on the 17th floor. One of your nurses told you that you were the strongest patient she’d ever had. I annoyed everyone with my constant requests to keep you comfortable, and swelled with pride that you got the recognition you deserved. So why did it turn out this way?

After spending hours with you that dark day, I looked through our photos and chose one to give to the nurses, techs, and providers on the floor. I signed it and gave it to them before I left the hospital one final time. I don’t know why, but I felt compelled to do it. I got an email from the nurse practitioner who was with you during your CT scan thanking me for it later. In another world I imagine that we’d have gone back to visit to celebrate you being cancer free, thank them all in person. Now I don’t know if I’ll ever go back there again. I never was a huge fan of the city. I only went for you.