364

Tomorrow marks one year since Phillip's cancer diagnosis. It's a milestone we never imagined facing, and yet, here we are, still standing and changed in ways we may never recognize. This diagnosis has brought so much into our lives and it is hard to put into words. As we process the significance of this milestone, we also continue to muster patience and grit with ongoing chemo and clinic appointments.

Day 364 brought another chemo appointment, one that has been much anticipated given recent delays. Unfortunately, we were sent home from the clinic last Monday because Phillip's white blood count was too low to administer chemo. Our anxiety has been heightened since learning of the progression and we were ready to start the new plan of attack. Learning chemo could not happen last week was maddening, especially since the clinic should have been reactive to his low counts at the prior insurance appointment so there would be no further delays. All of this was a reminder that patients and caregivers have to advocate loudly.

Last Monday, Phillip shifted into sales mode and attempted to win the doctor and nurse over letting them know we understand the risks of chemo during low white counts. I wanted to scream, "but he ate dirt as a kid and he never gets sick!." Despite internal escalations at MN Oncology, we were told they absolutely cannot administer chemo when white counts are as low as Phillip's. This subsequent delay meant a month had passed since we learned of the progression and there has been no treatment. All of this has felt like one step forward and three steps back.

However, the glimmer at last week's appointment was meeting with a research oncologist named Mandy, who spoke with us about a potential clinical trial. We've been told enrolling in a clinical trial requires the stars to align as treatment history, cancer biomarkers and geographic locations are all critical components to qualification. The trial Phillip may be a candidate for has a 12% acceptance rate, so while it is exciting this opportunity exists, we are not holding our breath. During the appointment with Mandy, Phillip granted authorization for MN Oncology to send a tissue sample of his tumor biopsy from last year to the pharmaceutical company running the trial to determine if his tumor biomarkers align with the requirements. We will find out in 3-4 weeks if he is a candidate. (Side Note: it is mind-boggling to think there are freezers full of tumor biopsies of cancer patients somewhere within medical facilities. Phillip and I both imagine this looking like Jurassic Park's cryogenic lab).

Even if it turns out he is not a match for this trial, he has been added to Sarah Cannon Research Institute's list for consideration in other trials.

Today, we were excited to find out that Phillip's white blood cell counts were sufficient for his infusions to continue. You know you're in the thick of it with a cancer journey when the prospect of chemo infusions brings excitement.

Today's infusions included his new regimen with "pannekoeken huis," which comes with a list of side effects, such as skin rashes. Sun exposure can worsen the rash, so protecting Phillip's skin will be crucial this summer. Like a vampire, Phillip will need to avoid the sun, making the use of liquid flannel, wide-brimmed hats, and SPF clothing more important than ever. It's unfortunate that this new immunotherapy is starting now, as he has been eagerly awaiting the end of our winter hibernation to spend time on our boat again.

Like he alway does, Phillip will tolerate this new side-effect with stoic resilience and his trademark positive attitude. Apparently, the worse the skin rash, the more effective the drug. Let's all hope Phillip starts to look like a pubescent man-child for the next few months!

This past weekend, to mark his one-year cancerversary, we enjoyed a staycation at the Four Seasons in downtown Minneapolis with Allison and Brent. We indulged in the spa amenities, slept in, and admired the San Antonio Spurs and Colorado Avalanche, who were also guests there. It was a weekend filled with laughs and naps, marking a milestone I am glad we shared together.

Leading up to this one-year mark, I've thought a lot about our "before." There will always be the what-ifs — the wish for a DeLorean that could take Phillip back in time to catch this as a polyp, at any other stage, in any other world where we got there sooner. But nothing good lives in what-ifs, and we cannot change where we are.

The night Phillip went to the ER, it was a beautiful evening. I was sitting on our front porch watching Lenie play in her hammock. It was golden hour, and I remember thinking what a beautiful life we have built. My spidey-senses were already going off, knowing Phillip was en route to the ER, and I made myself a promise: remember this moment. This may be the last time everything is perfect.

Most days, I cannot believe this is our life and the significance of the one-year mark is a cruel reminder that this nightmare is not over, and will not be for awhile. People often comment on our strength. I understand why, and I'm grateful for it. But the truth is, it isn't strength. It's adaptation. It's putting one foot in front of the other because there is no other option. It's waking up and doing the next thing, and then the next...

Receiving a cancer diagnosis comes with a steep learning curve. Over the past year, we've discovered a great deal about ourselves, about each other, about our families, and about the very real flaws in our healthcare system. We've learned that every cancer journey is singular, that stage IV is no longer the sentence it once was, and that the internet, when used wisely, can be a powerful ally. We've learned that Google, used unwisely, is not your friend. We've learned that nutrition and hydration matter more than we ever gave them credit for.

We've also learned not to let Phillip order Chinese food after a gummy, unless you have a large family to feed and no plans for the next three days.

I've learned to love this new version of Phillip, even on the snappy mornings. I've learned to be a black cat and have a higher tolerance for his groans, sighs, and sad eyes. I'm not always successful. But I'm trying.

A year in, it comes down to this: nothing else matters if you don't have your health. Take the trips. Say I love you every single day. And if someone you love is headed to the ER on a golden evening in late spring, sit on your porch a little longer. Watch your daughter in the hammock. Let the moment be perfect for as long as it will hold.