Time marches on as I continue to heal and we continue to be grateful for how well things are currently going. At the same time, we continue to live with uncertainty, making planning ahead nearly impossible.
January
The first month of 2023 was one of initial healing, with goals of walking long distances on flat trails and hard packed sand, with the occasional jaunt up a dune or a small hill hike. I was delighted to be able to accomplish all of that, including the big goal of making it all the way to the end of the sand spit and back – which I managed to do on our last day in Manzanita.
More importantly though was that my stamina was returning. By the end of the month, I was no longer exhausted when I returned from my half-day walks and had the energy for quiet pursuits some afternoons. I even added light weights, light floor exercises and a few easy resistance band activities.
Hale spent his time learning all about a new form of water sport, dock starting on his foil, and decided to go for it. After searching high and low for the best deals on used or new equipment, he soon had a new setup and had already given it a go before we left Manzanita.
For both of us, it was a time to recover from the traumatic events of the last two months and let our minds catch up with where are bodies were – stuck back in the States with a cancer diagnosis. Long walks on empty beaches, sunrises and sunsets, and lots of rain made for contemplative time….alongside plenty of escape with books and movies.
A highlight for us both was a visit with our wonderful eldest niece and her fiancée. We’re so lucky that his sister lives out here and they had planned a family week at the coast long before we had any inkling we’d be back in Oregon. So we just crashed in on their time and it was delightful. We’d enjoy spending time with them even if we didn’t love them to pieces as family.
It’s been surreal to be back in our home country but to not be seeing family. Our family is in the Northeast, Midwest, and South and our insurance (and preferred part of the country) is in the Pacific Northwest, so being back in the US didn’t mean we were anywhere near them. Of course there had been offers to come visit before, during and after surgery, but I’d been petrified of flu or COVID delaying my surgery and then had wanted to focus on my recovery. These were our first family hugs and their sincere concern was like a warm blanket, but mostly we just loved catching up with them and hearing about their world.
We loved being in sleepy Manzanita, with its one main street of shops and restaurants ending in the ocean. Busy in summer and empty in winter, we experienced only slight upticks in traffic on the weekends but mostly it was extremely quiet and serene. I could walk the beach for hours without seeing a soul or spend my mornings wandering the trails in the state park seeing more elk than people. We also loved our Airbnb which made me feel better about having gone crazy booking it in the first place.
On the medical front, the rosy “it looks like we may have gotten it all” diagnosis became marred by the reality of new indications that didn’t match. Soaring tumor markers could mean that we tested too soon after surgery or they could mean something more sinister.
Unexpectedly finding ascites (abnormal fluid in my abdomen that is sometimes described as cancer weeping) led to another long rainy drive into Portland the very next day for a paracentesis (draining the fluid for testing) and yet a lab muck-up meant the right tests weren’t performed. Is the cancer back or did they really not get it all? Or is it a sign of a different disease? Or inflammation left over from surgery? Wait and see on all of the above.
February
February brought a change of scene as we moved twenty minutes up the coast to Cannon Beach. On day one I hated it. It felt commercial, big and crowded. There were people on the beach and there were cars. Horror! After a day or two, I got over my culture shock and stopped comparing it to Manzanita, found all the good parts, and settled in to enjoying it for its own quiet winter beach town features.
Turns out our closest beach is separated from the main beach by a river and I most often have it to myself. Definitely the biggest prize is that I can walk from our home straight into incredible Ecola State Park, which is the epitome of forest meets sea, with towering second growth forest ending in sheer cliffs down to a shoreline scattered with haystacks, arches and hidden beaches.
The trails that traverse the park are not immune to the wet Oregon winters and most days were too muddy for walking.
I often simply walked the road up into the park, which was almost as spectacular. The hidden bonus of road walking was that I never had to watch my step so found the experience even more immersive as I could feast my eyes on the trees, shrubs, moss and ferns rising up in all directions.
And up is the key word there. After spending the month of January regaining my stamina on the flat, I was ready to get back into hill shape.
Trudging up the hills in the park at first felt exhausting, leaving me with aching legs, core and lungs. But before the end of a month, I had breezily achieved my goal of reaching Hikers Camp.
February also gave me time to rebuild my strength with weights, resistance bands, and even core work. As the month ended, I was on the phone booking into a Pilates class for when we return to Portland in early March. I’m a wee bit nervous of course, but think my scarred belly is ready for it.
Hale was also making great progress with his new sport. Having something fun and new to learn and practice helped pass the days that otherwise felt like biding time while we wait for the doctors to figure out my cancer.
The highlight of the month was without doubt a wonderful long weekend with my two big sisters.
They both dropped everything in their lives to come out and spend several days which was healing for all of us. I didn’t know how much I needed their hugs until I was in their arms. Seeing me healing and healthy went miles to allay their fears.
Plus we just had a marvellous time – exploring the coast together, eating all the seafood we could manage, laughing, talking, sharing and catching up. They are not only my sisters but also my best friends and it had been far too many years since we’d had a sisters’ weekend together.
So what’s next?
Speaking with different doctors has brought home the point that absence of evidence is not evidence of absence. The presence of ascites could mean residual inflammation from surgery or could mean that not all the cancer was discovered and removed. The biopsy taken from one spot in the peritoneum that showed no evidence of cancer doesn’t mean that cancer isn’t lurking elsewhere in that enormous organ that lines our abdomens. The fact that the drained ascites showed no evidence of cancer cells doesn’t mean much when you learn that detecting cancer cells in ascites is notoriously extremely difficult to do.
Since that paracentesis, and as I await the next CT scan, I am again afraid of what I see my body doing. Does the growth in my belly mean I am gaining weight post-surgery or that ascites is accumulating again or god forbid, that I am growing another mass? Who knows is the truth of my here and now. We are certainly optimistic that all these fears will prove to be unrealized. And yet until they are, they dictate our ability to control our future.
I continue to struggle mightily with this, which makes sense since it is so much a part of who I am. Not only while actively traveling full-time, but also well before that when I was never without some excursion in the works even if it was only an add-on to an international business trip.
And of course planning played a key role in the lead up to our early retirement – that’s what made FIRE possible after all (not once, but twice if you count our mini-retirement when we sailed full-time for four years.) But beyond travel planning, my passion and skill for planning was always one element of the success I enjoyed in my career.
Taking away the ability to plan is like ripping out a part of me – which is ironic given that the organs I had removed are causing me no emotional distress although they certainly do for other ovarian cancer patients. But we have to accept this because the stark reality is that cancer is uncertain.
However, that’s not the whole picture and only feels that way when I let it. The other reality is that I do have control and the ability to look ahead. Not only can I design my days down to the minute if I choose, but I can also confidently schedule the current week and even the weeks ahead of the next doctor appointment or scan.
I can even, with caution and caveats, organise a few weeks or even a month ahead for travel or visits from family and friends. As long as everything is cancellable, or close to Portland, and everyone involved knows it could change, then why not? I am grateful for this and strive to remain positive in how I view our current situation.
I intermittently find travel podcasts inspiring as I envision places we will go someday or frustrating as I can’t begin the planning process for them that I so long to do. I catch myself looking at listings for Iceland housesits and wonder why I am torturing myself when there’s no way I can commit. Old habits are hard to break when they are so deeply ingrained.
Didn’t the whole world of travel lovers have to learn to deal with this during COVID? Why then is it so hard for me now?
I think there are three reasons:
(1) We were fortunate enough to be in New Zealand where they handled the virus so effectively that we were free from COVID in the community for much of the time that the rest of the world was suffering shocking death rates. We had no desire to leave. We were able to continue living in a country that we loved and continue freely traveling with the exception of a few lockdowns during which we were confined to the beautiful beaches on our doorsteps.
(2) COVID was a collective experience and something as personal as cancer has a different impact on our psyches.
(3) Does wanderlust ever become easy to tame when external factors force us to try?
What a privileged problem to have, but therapy teaches us that suffering is not a comparison game nor on a continuum.
Ultimately I hold onto the hope that while the physical bits that were taken out of me are permanent, the ability to plan and travel is not. I will be clear of the current level of uncertainty and instead live with a much lower grade level of insecurity, just not yet. And I am grateful for every day that I am healthy, even whilst living with uncertainty.
Once markers normalize, once I am consistently clear of ascites, once I have a clean GI workup, once the scans are all clear, then I can move into maintenance mode of check-ups every three months. I’ll grow the confidence to travel freely between those and eventually develop the self-assurance to plan ahead for the subsequent three month period, and then the next, and then the one after that.
It feels strange to be sharing my vulnerabilities here, but I continue to do so with the hope that my story helps someone in a similar situation who is navigating an illness as an interruption to their world travel journey.
PS – Did you know that a synonym for reality is certainty? No wonder I am so turned upside down!
