A Gritty Year

The last maintenance cycle deviated from our expectations, instead bringing extreme fatigue and nausea. These unforeseen symptoms during "easy" chemo highlighted the unpredictability of a cancer journey, reminding us that assumptions should never be made. Over the past two weeks, I know I was particularly annoying to Phillip by repeatedly asking, "How are you feeling?" and "Do you need anything?" As a caregiver, there's a feeling of helplessness when the person you love and care for is unwell, and you have to step back and just know nothing you try to do will change how they feel.

In the midst of Phillip not feeling the best, the "magic" of the holidays was in full swing. This month was extra busy with festivities and family gatherings which likely contributed to his fatigue. I felt determined to make sure the traditions and decorations overcompensated for the quiet resilience resonating throughout our house. We attempted to make Christmas cookies, which ultimately resulted in "Kelley Math" not mathing and skipping 1/2 cup of butter leading to a crumbly, chalky snickerdoodle cookie experience. However, we tried to redeem ourselves with the sugar cookies, only to realize we did not have a rolling pin... cue the foam roller. We also did not have any cookie cutters so we quickly found shapes out of Lenie's play-doh set to use. (As you can probably tell, we are not bakers in this house).

The holidays felt peaceful and more real than ever before. Phillip's fatigue may have been in full swing, but he showed up for the big moments, like he always does.

Given Phillip's persistent fatigue over the last two weeks, I assumed his hemoglobin was dropping again and it really kept me on my toes. My eyes stayed glued to him every time he stood up to see if he was wobbly, which I know also really annoyed him. His balance remained steady, and if he did stumble it was probably because of a cat lying on the floor.

To my surprise, his labs today showed his hemoglobin was a 9.4! This is amazing news and proved me wrong. While I am happy his hemoglobin is on the uptick, it doesn't explain his fatigue for the last two weeks. However, the nurse practitioner assured us that all his numbers look great and for him to keep doing what he is doing.

A bright glimmer for today was that our time at the infusion suite has decreased because Phillip is receiving two fewer infusions. Skimming two hours off our time at the clinic puts a little extra pep in our step on chemo days. It still rattles me that we've become regulars at a place where "everybody knows your name," and we also know the "best seats in the house," especially now - when a strong draft by the windows makes already cold patients, even chillier.

While at the clinic today, Phillip's phone buzzed as he napped and a "507" area code with "Rochester" displayed. I woke him quickly: "Mayo's calling!" They've scheduled a virtual appointment with a surgical oncologist for January 8th. This is significant. When MN Oncology referred Phillip to Mayo's Surgical Oncology unit back in June, they rejected him as a patient, citing "a heavy burden of disease." The fact that they're willing to see him now feels like progress, though I'm bracing myself for either possibility - a gentle letdown or an actual plan of attack. Fingers crossed for the latter. I've already researched the doctor and his specialty is aggressive, advanced, complex cancers. I'm taking that as a good sign.

In other exciting news, we've started disconnecting Phillip's chemo pump at home. This allows Phillip to skip his Wednesday pump disconnect appointment. The first time went a bit rocky, which prompted a few quick YouTube searches, but all is well now. My dislike for blood and needles has somewhat subsided and I am tolerant to this procedure and can assist when needed. I am so excited I can let my vet know I will no longer pass out at the dogs' vaccination appointments.

We've learned so much this year, whether it's tolerating platinum-based infusions, flushing ports, reading lab results, or advocating in medical appointments, it's been a year of firsts. Skills we never wanted but now possess. We've become fluent in a language we never asked to speak: CBC counts, tumor markers, treatment protocols. We've learned which questions to ask, when to push back, and how to find moments of lightness in hospital rooms. It has also been shitty and gritty and all things in between, the kind of year that changes you whether you're ready or not.

This year has been the ultimate lifequake and reminder of our vulnerability. It's shown us how quickly "normal" can vanish. 2025 has also taught us that joy and difficulty can exist side-by-side and that you can laugh in a chemo clinic, find gratitude in a stable hemoglobin count, and feel profound love while also feeling terrified. This was the year of truly being alive and taking nothing for granted. The fragility is real, but so is our resilience. And we will carry both with us into 2026.

Wishing you all health and happiness in the New Year,

Kelley