In our last hospital room meeting when she shared the initial pathology results, Dr Steiner advised us that we would need to stay local for the next six months minimum. There would be regular blood testing for tumor markers; CT scans for spots, nodules and tumors; and the biggy, a full GI workup with a specialist GI disease surgeon. In the moment, that seemed like a very reasonable plan and surely something we could easily do.
Within days, six months local began to feel extremely confining. Stuck in Portland for six months? Surely we could travel some? Sneak out for a month in Europe in spring between tests? I learned that Kaiser has an option where you can have tests done within one of their other regions, so we could even be in California or Seattle at test time! My damaged spirit leapt at the idea of travel and, even more so, at the idea of not letting cancer dictate our lives.
But then reality hit. How do you book a trip to Paris for April when you don’t know what the endoscopy and colonoscopy in March is going to find? What happens to the February in California plan if the January CT shows something that needs to be biopsied?
Eventually, god willing and the creek don’t rise, we will be able to travel again. Even if they did get out all the cancer and find nothing else in the next six months, I will be on a five year regimen of tests and exams every three months, gradually increasing to every four months and then every six months. But, if I am initially consistently clear, we can eventually have the confidence to make (cancelable) plans for travel.
For now though, that makes no sense. So instead, we are traveling locally.
Two months on the Oregon coast. Time to breathe by the sea. One month in Manzanita and one in Cannon Beach to give us different beaches, trails and sights.
Then a month dog sitting in a Portland neighbourhood we’ve never experienced (primarily to coincide with my GI workup – who am I kidding?) Then perhaps a jaunt to Seattle or Bend or Vancouver Island?
We’ve committed to staying in the states until early October which gives us nine months for surveillance and then a reason to celebrate as we’ll be formally welcoming our new nephew at his and our eldest niece’s wedding.
But the Monday after the wedding? It won’t surprise you to know that we have booked international flights out of Indianapolis with the hope that we will be able to use them to return to a lifestyle of our choice. Refundable of course, but that’s the way it will have to be for the next five years.
And in the meantime, we’ll make the best of where we are. Sure it’s the absolute worst time of year to be in the Pacific Northwest, but the sun comes out every couple of weeks.
Seriously though, we’re in one of the most scenic places in the US, regardless of the time of year. We’re appreciating the empty beaches and trails, the soaring eagles, the playful seals, and the time together we might not have had if the surgery had gone differently.
I’m moving well again. I’ve progressed from shuffling around the house and sidewalks with hiking poles to slow walking to brisk walking. I’m able to do gentle hills and trudge up the paths through the sand dunes. I have my goals set for real hills in the months ahead.
I’ve started very light physio and stretching. I’ve added a few light band exercises, although I have to pay special attention to not engage my core as it is still extremely tender inside and out. I had kept up my usual strength training routine until the day before surgery and am keen to get back to it before too much atrophies (although I accept that it will be months before I can resume real core work.)
This time of year, the soothing nature of the deserted beaches is tonic to my soul. Despite the methods our therapist has shared, I’m unable not to worry about my cancer. Everything is too uncertain to not think about it more than I should.
The concerns change as time passes, but they are ever present. What will they see in my six week post-op physical? What will the first set of blood tests post-surgery show? Will the spots on my CT scan have grown or magically disappeared? And if they have magically disappeared, will I be able to accept that they are really gone and were never any cause of concern? What will the GI specialist find?
I’ve found an online support group for the rare form of cancer they think I have and I find it alternatingly comforting and terrifying. The largest dose of emotion it provides me though is gratitude.
Gratitude that I found my tumour relatively early. Gratitude that I was able to access amazing care so quickly – not in just one, but in two countries – and had it removed before things got worse.
Gratitude that my surgeon didn’t open me up and find the widespread advanced cancer she and Tom thought they would.
Immense gratitude that my surgeon was so skilled that she was able to successfully perform a major operation without anything going wrong during surgery. Most importantly, that she expertly removed a 20cm tumour without it rupturing. This is something I mostly took for granted until I learned how many women move from a low stage of ovarian cancer to a higher one due only to the tumour rupturing and the cancer cells spilling out into the abdominal fluid during surgery.
Gratitude for the love and support of family and friends. Gratitude for an amazing, empathetic partner who manages to be patient, compassionate and a pillar of strength all at once.
For now then, we patiently wait for the next steps with the cautious optimism that they will bring reassuring test results, clear scans, and negative findings from the GI procedures.
With those, we will gain certainty and confidence that we can move forward without this constant anxiety and with the ability to plan. Rather than fearing it as a sneaky foe, I’ll learn to trust my body as a friend again, enabling me to do all the wondrous things I envision.
