Playing the Game

Phillip had chemo on Monday after it was postponed last week due to low white blood cell counts. Even though Phillip ate dirt as a child and never catches bugs, the doctors will not risk infusions if his white count is tanking.

Although Phillip could not receive infusions last week, he was offered an iron infusion to help with his anemia, as this may help with his fatigue. His response: "Nah, I am at 70% right now and I don't think Kelley can handle me at 100% anymore." And he's so right.

Last week's blood draws brought new excitement because his alkaline phosphatase ("ALP") was back within normal range. ALP is an enzyme that speeds up certain chemical reactions in your body and is commonly used as a marker of liver health. Up until this month, Phillip's ALP was high, and some weeks, extremely high. This number has always been "one to watch," as the health of Phillip's liver has been one of our greatest concerns.

Opening his complete metabolic panel results to see healthy liver markers brought such relief over the past two weeks.

We've previously been told surgery is not an option due to the burden of disease in Phillip's liver, but this blood work suggests the treatment is combating the tumors that had infiltrated his liver. Does this open doors we thought were closed?

Perhaps our questions to Dr. Tatineni were premature given this new turn of events. But Phillip and I both saw glimmers of hope in numbers that used to be so bleak. When we asked her on Monday about adding radiation to eradicate even more disease, I was stunned when she answered, "No, if we treat it, it will just come back."

I'm still searching for the words to explain how much her response threw me this week. I have a feeling her objectives don't match ours, and we need a deeper conversation to decide whether we want to keep working with her. I understand how serious Phillip's cancer is, but I want a long-term strategy built on shared goals.

I don't think this is the bargaining phase of grief. I'm recognizing that Phillip is young, he's gutting out chemo every other week, and we are not here for "palliative treatment." Our goal is "No Evidence of Disease" (NED), and we recognize the road to get there will be hard, but that is why it is called a fight.

After the appointment, I told Phillip how disappointed I was in Dr. Tatineni's response. He told me I can't expect the answers to change, and then he said, "Kell, I have terminal cancer." It caught me completely off guard; we had never said those words since this all started. My stomach flipped, and I could feel my heart break into smaller pieces. I immediately shot back, "Don't say that. We don't say that." To which Phillip replied, "I am not going to white-glove this around you. We both know what this is." That brought on big tears and bile rising in my throat. I can't help but question how this became our life. Here we are at a restaurant on a Monday, arguing about Phillip's cancer prognosis. Yes, we've been told his cancer is "incurable," but that has never stopped us from holding onto hope. But the word "terminal" sounds like it belongs in a tear-jerker cancer movie, the kind you walk out of thinking, "That will never happen to me."

And just like that, two sentences have me spiraling and reaching for the Lorazepam to function. Perhaps it's the change in season, reminding me that time moves on and we are still here in the thick of it. Or perhaps it's coming off the heels of an epic summer of vacations, when cancer wasn't at the forefront and it felt like we were winning at life. Or perhaps it's time for a medication check, and my anxiety meds need to be amped up. Whatever the reason, I'm in the midst of a sad week over here.

Phillip is telling me to recalibrate my expectation of "good." And I know he's right, because he always is. "Kell, I feel the best I have felt since this started. This is all so GOOD. We need to be happy about this." Yes and yes. But I've been resetting expectations since the beginning, and every time I reset, I feel like I lose a little more of him.

To focus on the positive, this past weekend, Phillip went on his annual BWCA trip with most of the "outlaws" in our family. This is a trip he looks forward to every year. Last year, unbeknownst to us, his throat ulcers were causing his hemoglobin to be extremely low which caused the BWCA to be pretty tough for him. But this year, Phillip was back looking ruggedly handsome with a 7.3 hemoglobin. The trip was a success and I am grateful the camping gear is packed away again for another year.

In other happy news, we added a new member to the family and now have a fourth (yes, fourth) dog named Winston. He's become the blessing we did not know Lenie needed. They are two peas in a pod and have developed a strong bond. He sleeps with her every night and we go to the dog park most days where Winston and Lenie frolic through fields together. It makes my heart so happy.

It's these moments that ground me: knowing Phillip is in his element at the BWCA, and hearing Lenie's belly laughs with her new best pal at the dog park.

And we carry on. We play the strategy game against cancer alongside the game of life.

While I navigate the mental whiplash of this week, I will force myself to recalibrate, bask in the glimmers, and immerse myself in clinical trial research. Because knowledge is power, and if we have learned anything, it's that playing the game also means being his best advocate.