Hawaii.

What my view looks like today:

What I am imagining my view looks like today:

Today is PET scan number 17 – I think. But to be honest, I am losing count!

It has been a long time since I have updated via blog, so let me do a quick rundown of the last 6 months.

My lungs improved greatly after February and then I had another PE scare in early April that turned out to just be a pneumonia or a chronic lung infarction (still inconclusive which it was). I spent most of April feeling pretty under the weather, but again, showed good improvement through May and June.

Then it was June 19th, a day we had been planning for almost 2 years – our trip to Hawaii.

{This part of the story is not (directly) related to cancer, nor is it about planning an awesome vacation, but hang with me, I’ll get to the point.}

We first talked about going to Hawaii in 2018 when friends of ours (I’m looking at you Hanna family!) said the next time we go to the beach together it needs to be Hawaii, not Delaware. That’s not hard to agree to, but it’s also not cheap to agree to, so we created a ‘Hawaii jar’ and started collecting any and all loose dollars and cents.

Now, for those of you that haven’t had experience with a life threatening illness, let me give you some insider info: knowing you have a disease inside you that can overtake and take your life at any time, makes it hard to plan for the future. Even in periods of remission, I have a hard time thinking long term. Seeing my kids through high school, turning 40, celebrating our 20th anniversary, future career plans – it all feels uncertain for me and therefore difficult and a bit scary to plan for.

That’s how planning for Hawaii felt.

By 2019, our jar was filling with pennies, but my hope of getting to use those pennies for anything other than medical expenses was fleeting. My immunotherapy treatments had left me terribly ill and out of options for treatment beyond clinical trial at a time when my cancer was still very present. It felt so risky to hope for more years, much less an adventurous weeks-long vacation on an island in the middle of the Pacific Ocean away from my care team.

But the thing about hope is it is stubborn. It is buoyed by optimism and fueled by faith.

Great doctors also help buoy hope when it feels like things are sunk.

In January 2020 I started a clinical trial that breathed fresh hope into the dream of a family trip to Hawaii, but by March we were realizing that cancer was not the only obstacle threatening to keep us from our trip. We wore our masks, continued to save our nickels and prayed that there would still be a way. In August I was showing full response to the treatment and it seemed as though COVID was slowing, so in September, we bought four plane tickets to Honolulu, arriving June 19th 2021.

Through the rest of the year we planned and saved and dreamed of all that we could see and experience. When my December PET scan still showed full response and once the PE nonsense was under control in the beginning of 2021, we started to book everything we could – campervan and other lodging, flights between islands, camp sites and experiences.

Now, this story is really quite a bit longer (yes, that’s possible). It’s filled with more ups and downs and COVID tests and vaccinations and cancelled flights and cars getting towed. But here is what I want you to know: a by-product of hope is gratitude.

We got to go to Hawaii for 3 weeks and snorkel with manta rays and stargaze and adventure and swim at the most beautiful beaches and climb volcanoes. It was idyllic and beautiful and to someone who doesn’t know our story, I’m afraid the real beauty of this trip for our family might be lost.

I didn’t think I would make it to Hawaii.

But we dared to hope and that is what made our trip so beautiful. What a gift it was to be together as a family. To make memories. To laugh and to fight when the space in the campervan was just a little too tight. What a gift it was to watch the sunrise together even with the complaints of kids who didn’t quite appreciate the anticipation of the dawn. What a gift it was to marvel at the majesty and beauty of God the creator in every fish swimming in the reef and every star dotting the sky and every crater of every volcano. The togetherness, the anticipation and the hope of the trip is what magnified the beauty of a place that already defines the word. Grateful does not even begin to describe our sentiment after this experience.

Oh and PS – PET scan number 17 shows complete metabolic response, still. And grateful does not begin to describe my feelings about that either.

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