Some Good, But Not Great, News

Before Phillip’s PET scan on Saturday, February 21, we carved out time for a much-needed date night at 6Smith. For a few hours, we set aside the weight of worry and simply enjoyed being together. We dined on tartare, lobster, bread with gourmet butters, and heirloom carrots. It was such a wonderful date night and we soaked up the normalcy. Phillip went to bed early to ensure he could "ace" his test the next day.

We were told the PET scan results would be "rushed" so we could discuss them with Dr. Tatineni at our appointment on Monday morning. Our outlook going into this appointment was there can't be bad news. If tumors are stable = GREAT. If there has been tumor growth = not so great, but this means we add back in the heavy drugs to control the situation.

Since the start of maintenance chemo we were told there would be a noticeable difference in Phillip's side-effects, fatigue, nausea, etc. However, this anticipated reprieve from the bad days never seemed to happen. If they did, they were few and far between. I kept thinking, "we'll feel the relief next cycle," but, truthfully, there have been no significant differences in side-effects between FOLFOX and maintenance. It has been just as draining and unpredictable but also with an added layer of disappointment.

On our way to the appointment on Monday, we maintained the mantra, there will be no bad outcomes from this scan.

We sat with Dr. Tatineni as she retrieved the images (they had not yet been reviewed by a radiologist). As she pulled them up, for reference, she also displayed the PET scan from 5/31 as well as the CT from 12/5. If you’ve ever seen a PET scan, you know they can resemble inkblots from a psychological evaluation, seemingly abstract, shadowy, and almost impossible to interpret without guidance. We had no frame of reference or what we were actually looking at until Dr. Tatineni began explaining. She pointed out the dull glows in the liver from the 2/21 scan and compared it to the bright lights from the 5/31 scan. As she was looking at them she said, "this is truly remarkable."

To know the liver tumors continue to remain stable, and in some cases, much smaller, is such a relief. From Day 1, his liver has always been the greatest concern for his doctors. Seeing the dim glows in his liver reaffirmed our mantra: there will be no bad outcomes from this scan.

Dr. Tatineni went on to review and, noticed there was a single glowing dot in a lung, as well as a questionable tail-bone break with "inflammation" or uptake in cancer activity. She ultimately said, "let's see what the radiologist reports." Based on the scans, the plan of attack was to re-introduce Avastin because his throat ulcers have resolved, and also coordinate with the radiation team to discuss next steps on the cancer in the sacral bone. We left the exam room feeling elated from her positivity and settled into the infusion suite for Phillip to begin this week's regimen.

Within 20 minutes of sitting in the infusion suite, the radiologist's results posted to MyChart. Given the positive discussion with Dr. Tatineni, I fully expected to read the findings and see "stable." Much to my surprise, stability was not noted anywhere in the radiologist's report and the final result was "disease progression." My emotions were already fragile, and the blunt, sterile language of the report that was so clinical, so absolute, sent the tears rushing in. I understand that a radiologist’s role is to report facts, not feelings. Still, reading stark medical jargon without any human context or compassion is hard to absorb, especially when it concerns someone you love.

In a nutshell, the radiologist indicated there were new nodules in his lungs, lymph nodes in the pelvic area, and thickening nodules on the abdominal wall.

So there we were, sitting in the infusion suite, reading words that said the cancer was progressing. The hope we carried out of Dr. Tatineni’s office dissolved in an instant, undone by a few stark, clinical lines.

I looked at Phillip in tears and told him I needed him to cheer me up as the tears were flowing and I couldn't control it. Despite what the name indicates, the "infusion suite" is not a private suite and we are in a room with other people who are receiving an infusion for one reason or another. I fumbled for a tissue box, of course it hadn’t even been opened yet, and I ugly-cried, tears, mascara, and everything else, trying to pull myself back together in a room that doesn’t really allow for falling apart.

And then Phillip did what Phillip does best.

He laid the optimism on thick, like a throwback to his single days at a bar, determined to make a girl smile. “Kell, this is positive. I felt like shit on maintenance chemo anyway.”

And somehow, that made me laugh through the tears. This is why I love him. As he sits there being pumped full of toxic medications meant to “make him better,” he still searches for the upside. And the truth is, he wasn’t wrong. If he’s going to feel awful, then let it be because the chemo is working overtime. Let the discomfort mean something. Let the price be worth it!

Once I had wiped the tears and snot off my face, I sat there with him, looking into his eyes as they pulled me back to a better place. There will be no bad outcomes from this scan. As we sat there he tried to change the subject talking about the features of our next boat. And since my emotions were obvious to everyone in the clinic, Phillip's nurse came over and said she had asked Dr. Tatineni to come see us and that we could go chat in a private room.

As we were waiting to meet with Dr. Tatineni, the woman sitting next to us finished her infusion, packed up her belongings, and walked toward us, portable oxygen and all. She gently put her hand on my shoulder and said to us, "I don't know what is going on, but I want you to know I will be thinking of you." And just like that, my faith in humanity was restored. This beautiful soul, going through her own battles, felt compelled to step into ours, with nothing but kindness.

When we finally sat down with Dr. Tatineni, we walked through the radiologist’s report together. She reassured us that the overall plan remains intact. We are restarting Avastin and will explore what radiation may offer. The goal is clear: to have Avastin target and wipe out the new nodules and lymph nodes that have appeared. There is still a strategy. There is still a path forward.

As we regain footing from this, we are holding fast to the belief that there will be no bad outcomes from this scan, only information to guide the next move. We are grateful Phillip had his scan earlier than March and the next plan of attack is underway.

Thank you all for the love and support,

Kelley