Finding Home

I didn’t realize how much care we’d taken to make our 10-year Minneapolis house a home until we moved into our new house in Seattle. 1,700 miles from home while staring a metastatic melanoma diagnosis straight in the face is a sure-fire way to make everything feel a little out of whack.

Conversely, it wasn’t until my husband and I were sitting across from each other at a Pizza Ranch in Rochester, Minnesota, that I realized our mountainous suburb of Seattle had become more of a home than we’d realized.

This was and is the crux of it all.

This was and is the beautiful trust of it all.

Finding home isn’t always as easy as it seems.

But there is always a sense that it MUST be true, it HAS to be true…we’re WHERE we’re supposed to be.

If you’ve had the fortune of living in the same house for 20, 30, 40 years, count your blessings of stability and security. If you’ve moved, been displaced, found your way in a place far from everything you’ve ever known, you understand what I’m talking about.

From the moment the Minnesota Mayo doctor called me with with MRI results indicating 8-10 lesions on my husband’s liver while I was sealing grout at our new home in Seattle, there were questions of HOME. Should we get the biopsy done at Mayo where the original choroidal melanoma diagnosis was made 3 1/2 years ago, where my husband spent a week in the hospital with a gold plaque filled with radiation stitched to his eye, where liver lesions were found on CT and MRI scans 3 1/2 years later? Or should we get the biopsy done 1,700 miles away in Seattle, the place we now called home? Our choroidal melanoma doctor was adamant. We must get the liver biopsy done at Mayo. They are the best of the best. They’ve seen more of this incredibly rare form of melanoma than anyone on earth. So we had the biopsy at Mayo, we got the metastatic melanoma diagnosis at Mayo, we had an MRI of the brain at Mayo, and my husband had his first immunotherapy treatment at Mayo.

But questions of HOME lingered, even so.

The plan was to have that first immunotherapy treatment at Mayo, to come home and have the second immunotherapy treatment in Seattle three weeks later, then return to Mayo another three weeks later for a third treatment and more scans. After that? Well, we’d go from there.

So after our unplanned 10-day trip to Minnesota and Mayo Clinic, after we landed in Seattle, right after we got in the car to head back home, I made the call to Seattle Cancer Care Alliance so we could get an appointment set up for Seth.

11 days later, Seth and I were sitting in an office downtown Seattle, waiting to meet another new doctor. The journey had already been exhausting. Adding to the exhaustion was 2 1/2 hours and seven phone calls with insurance and Seattle Cancer Care Alliance the day before, and 45 minutes of me meeting with a financial rep from family services trying to figure out whether or not this Seattle Cancer Care Alliance was in-network with our insurance plan. Thank GOD, all that work was worth our effort. The Alliance is IN-network, thanks to a special network of University Physicians we have access to as part of our insurance plan.

Finding home isn’t always as easy as it seems.

This consultation with the Seattle doctor was required before Seth’s second immunotherapy treatment could even be scheduled. The doctor had reviewed the case, but had us provide a full review anyway. Seth explained the side effects he’d experienced since his first immunotherapy treatment – full-body itching, low-grade joint aching, fatigue, nausea and a bit of diarrhea setting in. Dr. V explained that with immunotherapy, the side effects are more unpredictable than traditional cancer treatments. He explained the things to watch for down the pike, and predicted that the worst of the side effects are still to come. Then there were what-next questions, what-if questions, and those dreaded questions about HOME. Dr. V from Seattle Cancer Care Alliance was going to call Dr. M from Mayo. There were questions and differences of opinion on what would be the best dosing, when would be best to run the next batch of scans, and what the next-best treatment options would be IF immunotherapy doesn’t work. We explained that we’d like to keep BOTH providers, Mayo AND Seattle Cancer Care Alliance. This wasn’t a usual nor preferred practice for Seattle, but the doctor thought it could work.

Six days later and just two days from what was supposed to be Seth’s second immunotherapy treatment in Seattle, I spent another FOUR HOURS on the phone with insurance, Mayo Clinic and Seattle Cancer Care Alliance trying to determine WHERE oh WHERE we’d be getting that treatment.

Finding home isn’t always as easy as it seems.

We finally got clarity. After all of the questions and uncertainty, insurance was dictating that we needed to CHOOSE one place or the other for treatment. We couldn’t go back and forth between Mayo Clinic in Minnesota and Seattle Cancer Care Alliance in Seattle as we’d hoped and planned. If we wanted to receive ANY immunotherapy treatments at home in Seattle, we’d need to CANCEL the authorization of six immunotherapy treatments at Mayo and re-authorize treatment for Seattle. One place or the other. One home base or the other. Not both.

Time had run out. Everyone had done the best they could to support us and follow the case hour by hour, but the truth was, Seth needed his treatment in 48 hours, and we still didn’t have clarity as to where it was going to happen. We needed to make a decision and FAST. Treatment was scheduled for Seattle, but we didn’t have insurance authorization. We had authorization for treatment at Mayo, but didn’t have any appointments scheduled.

I spoke with a nurse at Seattle Cancer Care Alliance. From their perspective, it was clear that time had finally run out. We’d need to fly and get this treatment at Mayo in Minnesota. Then after that, if we wanted to get ANY immunotherapy treatments here, at our new home in Seattle, we’d need to CANCEL the Mayo treatment authorization, get treatment re-authorized for Seattle, and the doctors HERE would need to be in the driver’s seat moving forward.

Finding home isn’t always as easy as it seems. Or maybe it’s more that HOME can be elusive because we’ll never be truly home till we’re in heaven.

Time was pressing on these questions of home. WHERE oh WHERE would we call home for this treatment due in 48 hours? WHERE oh WHERE would we call home for treatment of my husband’s metastatic melanoma? WHERE oh WHERE would we call home?

When we circled back to reason and reality, the answers about HOME were undeniable.

  1. Our house is in Seattle.
  2. Seth’s job is in Seattle, and our health insurance is through that job.
  3. Our children are enrolled in school in Seattle.
  4. We can’t predict Seth’s health moving forward. We need to secure a local provider rather than flying to Minnesota every time he needs care.

Home is in Seattle now.

This is where we are.

Home is where you are.

Perhaps HOME is the presence of the Lord, wherever you are?

Here we are.

We are here.

Do you know where you are?

I called Mayo with an update and made them aware of our urgent situation. It took an afternoon, overnight and into the next late-morning of researching on Mayo’s end to get orders placed and appointments secured.

Seth booked his flight to Minnesota the afternoon of the 10th. At 4:30 am on the 11th, I pulled out of our driveway and drove Seth to Seattle International Airport for a 6:30 am flight to Minnesota. I stayed here at home with the kids and my family who’s visiting from Minnesota. Seth was greeted by his brother, Jake, at the airport in Minnesota, who then drove him to Rochester for labs and an appointment with Dr. M at Mayo.

This is not our preferred course of action. We wanted to use both Mayo AND Seattle Cancer Care Alliance for treatment and testing related to Seth’s metastatic melanoma. But Dr. M understood, they suspected we’d need to transfer care to Seattle. This is home now.

Dr. M has spoken with the head of the Seattle Cancer Care Alliance. There are still slight differences of opinion as to WHEN follow-up scans should be run and WHAT KIND of follow-up scans should be run in the immediate future. There are still slight differences of opinion as to what the best contingency treatment options would be IF immunotherapy doesn’t work. Blood work revealed a level in the liver that was slightly elevated, slightly abnormal. Seth will need to return for more blood work next week to make sure it isn’t on the rise. ALL of this will be done and decided at home, in Seattle.

For now, right now as I type, Seth is wrapping up his second immunotherapy treatment at Mayo Clinic in Minnesota, with brother, Jake, by his side. Tomorrow, I’ll cancel the Mayo authorization for treatment, and we’ll begin the process of re-authorizing immunotherapy with Seattle Cancer Care Alliance.

Finding home isn’t always as easy as it seems.

Perhaps home is the presence of the Lord, the Abba Father’s Spirit, wherever you are.

  1. Auntie Joyce says:

    Wow Amy and Seth, you are walking with God. My love to all the family. Really good post.

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