Back to Reality

Here we are, back in Minnesota's gray chill, settling once again into the rhythm of chemo cycles. During our cruise, we soaked up every ray of sunshine, every degree of warmth, and every moment of normalcy we could gather. It was the perfect way to recapture joy in the midst of maintenance chemo.

There were learning curves for all of us, especially for Phillip's family, during buffet breakfasts, when Phillip needed to ease into the day at his own pace. He captured it perfectly when he told me, "Kel, I'm just like a puppy. I'll come to you when I'm ready." Noted.

Aside from our whirlwind camping trip last June ("we are making memories!"), which was just a few weeks after the life quake, this was truly our first family vacation since we began pulling ourselves out from the rubble. The pace was slower, and for Phillip, someone who could never sit still on vacations previously, was at peace with sitting in a lounge chair and soaking up vitamin D. We played cribbage, snorkeled with sea turtles, tested our fears at a water park, and enjoyed Lenie's giggles as she lived her best vacation life. Phillip was also in his element as he devoured soft-serve ice cream cones every day. In all seriousness, I think he had at least 8 one day! Every time I saw him he was double fisting soft-serve. It made my heart so happy.

Coincidentally, we celebrated our 10-year anniversary while on the trip. For those of you who do not know, we were married in a symbolic ceremony in Puerto Vallarta and legally married on Leap Day. We always joke that we have been married for 2 1/2 years but it feels like 10...

We had a sweet surprise when our cabin door was decorated by all the kids for our anniversary. It truly melted our hearts.

It was a great trip, there were some harder moments, but I am so grateful for the experiences and memories we made over the week! Vacation looked great on Phillip and I am so glad we were all able to sneak away.

We departed from Miami on February 1st, with temperatures in the 30s, which made Minnesota's weather seem much more tolerable. Right after returning from our vacation, Phillip had a chemotherapy appointment on Monday, February 2nd. To our surprise, his white blood cell count was too low for him to receive the infusions. We were somewhat puzzled that it hadn't recovered from the previous round, especially since he had an extra week to recuperate due to the vacation.

At the appointment, Phillip was experiencing significant nausea and back pain, and this was one of the first appointments where I could truly see the toll this all was taking on him. There was no cheerful small talk, just quiet and honest responses. It was definitely the wrong day for the nurse to butcher all of his medication names and ask if the list is current. (Health care providers, there has to be a better way...) The feeling of helplessness was overwhelming, and observing him deflated, nauseous, and in pain, was crushing. Given Phillip's pain and nausea levels, we took the postponement of chemo as a glimmer to start the week.

During the appointment, we also talked about Phillip's back pain and whether any intervention might offer some relief. Unfortunately, a few weeks ago, Phillip had a bad fall outside. It was one of those falls that seemed to happen in slow motion, and as I watched from inside, seeing his tailbone hit the ice, I knew it wouldn't end well. If you have seen Phillip, you know he no longer has a butt so there was minimal cushion for his tailbone against the ice. His poor bum didn't stand a chance. At this point it is unknown if his low back pain is a result of a broken tailbone or whether its pain from the cancer in his sacral bone. The oncologist suggested to consult with the radiation team to determine if perhaps a blast of radiation could help with any underlying cancer pain.

After discussing with the radiology team and evaluating Phillip's latest tumor markers, it was suggested that his scan originally planned for March should be moved to February to decide on the next steps. Phillip is now scheduled to have a PET scan on Saturday, February 21st, where he will take a nice nap in a mobile PET scan machine in the back of the semi at the Buffalo Hospital.

Dr. Tatineni has advised us not to place too much emphasis on the upcoming scans. Phillip has been in the maintenance phase since November. Oxaliplatin is no longer part of the infusion regimen, and Avastin has also been paused due to his throat ulcers. Phillip's tumor marker has increased from 5.2 to 12.8. Although this is more than a twofold increase, his CEA level remains relatively low. (The normal range is 0-3). For context, Phillip's CEA was 147 at the time of his diagnosis.

We are harnessing calm and positive energy this week with the upcoming appointments. Tomorrow, Phillip will be scoped again to determine if his throat ulcers have resolved. Given his hemoglobin was at 10 (!!!!) last oncology appointment, we have every indication to assume the ulcers have healed. If that is the case, Avastin will be added back into Phillip's chemo regimen again.

We are still living a rollercoaster and I never know what kind of day Phillip is going to have until he sees a cat. If it's a good day, its a cheerful, "Oh <insert cat name>, come here kitty kitty" vs a bad day will be him shouting, "You damn cats!" Its really been a great indicator on when I should proceed with caution around him.

Recently, on one of Phillip's hard days, I was struggling watching him feel just crummy and he looked at me and said, "Kell, this is why they call it a battle. It's not always going to be easy." Somehow, in the midst of his wicked nausea, he is still able to be my rock. And even on the bad days, there is still so much love. The unknown is scary and has been the catalyst for us to love as hard as we can.

I still feel like we are living life in a blurry, acute realm and most days I find myself questioning how we got here. I keep thinking I will see a flicker of light at the end of a tunnel and it will get easier, but now that we are nine months into this, I am still struggling to find the rhythm to this new life. Every hat I wear feels like it could slip off at any moment.

Instead of casually reading mystery novels, I now spend my spare moments combing through National Institutes of Health studies on the efficacy of soursop, dandelion root, and high-dose vitamin C, mapping out ways we might weave them into our daily routine. I carry this quiet fear that I’ll never forgive myself if we don’t explore every possible avenue, every alternative that might buy us more time.

As I research, my social media algorithms seem to haunt me, flooding my feed with “other remedies” boldly claiming to be the cure. My years managing fraudulent advertising settlements for the Federal Trade Commission come rushing back, and I know that if something sounds too good to be true, it probably is. And yet, I also find myself understanding, in a way I never did before, how these cure-alls can pull so many people in. When you love someone who is sick, desperation has a way of softening your skepticism. Hope, even fragile and improbable hope, can be incredibly persuasive.

So here we are, existing in the balance between science and hope. We review the research. We nurture what we can, carefully selecting what's best for his body and maintaining our spirits with determined optimism. We are protecting what we can control: our outlook, nutrition, moments of laughter, and the quiet belief that the body and mind can achieve more than we often recognize.

Please send all your prayers and positive energy into the universe for Phillip's scope and scans this week.