Author: 2ramblingshoes

It’s been too long since I posted but since that’s due to the fact that I’ve been back to living life, I won’t berate myself too harshly. 

It’s hard to believe that 10 months ago we were merrily tripping our way through life without a clue that cancer was breeding in my belly.  Or that only 9 months ago I was busy telling Hale who should have what piece of jewellery once I was gone.  That month of going from clueless to a stage 4 pre-diagnosis was a whirlwind but I think we are slowly recovering from it.  (My oncology therapist thinks I have PTSD and sometimes I agree.  Just mention that someone has cancer and I have tears running down my face whether I know that person or not.)

I’m so happy to be able to write that the six months between the last post (3 months Post Op) and now have been progressively positive – physically, mentally and emotionally.

A Heart Scare and then a Trifecta of Good Results

March was back to the Portland area for doctors’ investigations and the unfortunate discovery via a CT scan of fluid around my heart.  It could be caused by cancer or it could be something else or it could be nothing (sound familiar?)  

This led to further investigations with no real answers on cause, but during an echocardiogram, a reassuring cardiologist said that my heart was healthy and the fluid was not enough to cause problems.  While this was reassuring, it didn’t answer the underlying question of what was causing it?

He also took careful measurements of my enlarged aorta which had first showed up on a previous scan so that they can monitor this for changes.  (At present time, it is abnormally large, but not to a point of concern.)  I try to remind myself that if I weren’t undergoing all these tests and scans, I wouldn’t know about all these things.  I’ll have a regular echo scan done yearly now to monitor both the fluid and the (unrelated) aorta.

For most of March, we enjoyed a housesit with a sweet little old pup in a great leafy suburb of Portland where the first spring blossoms brought brightness and fragrances signalling the end of winter.  Hale found some docks and kept progressing on his foil skills and I proved to myself that I could still do Pilates post-surgery.

Although it will sound strange that I call this out, I also for the first time told a new acquaintance that I have cancer when I told our housesit host why we were back in the area.  Suddenly it became easy and I was comfortable telling Pilates instructors, friends with whom I hadn’t spoken in a while, and random people on the street (just kidding on the last bit.)

And finally some solidly good news started to emerge from my medical team.  My tumor markers were in normal range for the first time.  The ascites was still present in my abdomen, but not increasing. 

Best of all, I had a clear GI report after a triple whammy day of Colonoscopy, Endoscopy and Endoscopic UltraSound.  I don’t have GI cancer!  It’s becoming clear that not only can we trust the diagnosis of ovarian cancer, but also that the miraculous Dr.S really did get it all out.  Admittedly, I could not fully absorb this at the time and first needed to see another few sets of good results, but this was definitely a turning point.

On the move again

As the doctors reports turned better and better, we headed to Bend in Central Oregon for a two week April housesit. I’ve always wanted to spend more time exploring this high desert part of the PNW, and it was still within striking distance of my doctor should I need her. 

At the end of April we swung by Portland to see Dr S on our way north and soon we were up in the mainland coast by the San Juan Islands. Can you imagine a surgical oncologist who tells you to call when you are driving through and she will try to fit you in between surgeries? When I say I won the lottery with her, it’s true.  She treats me as a whole person and wants me not just healthy, but living life to the fullest.

More good test results from this visit brought additional reassurance that we were getting on the right track and I began to shift my mindset from dread that the cancer was still hiding and growing within me to dread that it will reoccur, which is particularly dangerous with the sub-type I have.  All the more reason to make the most of every day.

In Ancacortes, with warmer weather, so many trails and much better water conditions for Hale, plus a quick trip to see family in the Midwest for me, our time at the best cat sit ever flew by and soon we were finishing out May with two weeks in Vancouver BC.  Gradually we spent a smaller and smaller portion of our minutes thinking about cancer.

Although all this slow travel was intermixed with visits to Portland for doctor stuff, I am very glad we didn’t just sit still waiting for appointments.  I know other cancer patients have to sit still waiting for the next exams, tests and results, but being able to distract myself with travel certainly helped me cope.  (I wrote a whole post on the benefits of being financially independent and location independent if you are interested in reading my thoughts on that aspect of this year.) I needed distractions and needed to feel like I could plan, even if it was only for one month at a time.

Back in the other Vancouver (WA) at my June appointment, I broached the subject of international travel with my oncologist.  We discussed how to self-monitor daily, what parts of the world with what types of medical systems and English language proficiency were okay for me for now, and that I needed to be ready to jump on a plane to return if I found anything abnormal.  With this all in place, she cleared me to travel internationally between my three month visits.

This was a huge step forward!  I’m free – not as free as a year ago, but a lot freer than I was six months ago.  I’ll take it! Cancer is never far from my mind and may pop up again anytime, but being able to get back to planning adventures is a perfect way to combat that reality.

Gratitude for my good fortune

This is a good time for me to yet again sing my doctor’s praises. My good fortune in being paired with Dr S never ceases to amaze.  Endlessly competent, smart as a whip (yet open to admitting how much is unknowable with cancer), dedicated beyond belief, and unbelievably invested not only in my physical health but also in my life – I could not have drawn a better gynae onc surgeon from scratch if I had tried.  She saved my life in surgery and now shows true interest in my mental health and in getting me back to the things I love. She embraces my lifestyle of travel and is going to do all she can to enable it.  

Sometimes my appointments with her feel like a free therapy session tossed in with the physical exam.  She is helping me grow my confidence that even though I was stupid enough to dismiss a football sized tumor quite obviously growing in my abdomen, I won’t miss the next one.  She assures me that no one ever misses it the second time and the greater risk is over hyper vigilance.  The key, she tells me, is finding the happy medium.  And because I can’t do that on my own, she welcomes my calls from overseas – even if it’s just to tell me that ‘no, a hangnail is not a sign of cancer.’

With her support and guidance, I decided I was ready to not only go but also to go by myself.  Sure, would it be horrifying to feel something strange in a daily scan when I was so far from Hale?  Yes, but the world is pretty small with jet travel and I felt confident that I could make it back on my own without breaking down.  In fact, I needed to show myself that I am brave enough to risk it. I also want to embrace all of life’s opportunities and not squander precious time.

Back out into the big beautiful world

By the end of June, I took off south (way south!) to escape the heat.

I spent 2.5 months in Tasmania where I had a great time hiking every day in a stunningly diverse set of landscapes via a plethora of walking tracks. 

It was also great fun to reacquaint myself with solo travel – the pleasure of doing whatever I wanted (and needing to carry my own water – literally and figuratively) paired with missing sharing the adventure with Hale.  

I was conscious of my body and had a few “oh shit, what’s that? Is that cancer?” moments, but I didn’t dwell on it and was delighted to instead fill my mind with seeing new places, smelling new smells and hearing new birds.  I took comfort in knowing that a full set of scans, tests and exams were awaiting me when I returned.

Meanwhile back in the Gorge, Hale had a fabulous summer of wing foiling in the hot summer sun and a well-deserved break from doctor’s appointments.

So that’s where we are 9 months post-surgery.  My body is happy, our emotions are strengthening and our minds are starting to believe we can look ahead.  We’re fully aware that we’re not out of the woods yet, but for the moment, we are appreciating life.

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!

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.

Back home at one rental and then the next, I settled into a routine of slow walks and rest. 

I popped Tylenol every six hours like clockwork, with my alarm waking me for the midnight dose. That kept the pain completely manageable, except when I did stupid things like bend or reach, which was especially hard not to do when moving airbnbs a week after I came home from hospital, despite Hale’s best efforts to keep me from doing anything.

Initially, I was still only able to eat a few bites per feed before feeling stuffed and I was also afraid of a recurrence of nausea from the prolonged ileus. But gradually that diminished and within two weeks I was back to eating decent amounts and starting to add back in more interesting and hard to digest foods.  Within five weeks, I was back to eating normally. Each day I gained strength and felt more like myself. 

Morning and evening walks around (and around and around) the house and daytime walks along the sidewalks in the neighborhood, with my hiking sticks as insurance against a fall that could split my incision, filled my schedule.

Although I was in a good deal of pain, walking slowly didn’t increase it so I was happy to follow doctor’s orders to walk as much as possible in order to expedite my healing.  I was exhausted after each walk and happy to collapse for a couple of hours on the sofa or bed before the next round. 

We watched as the internal bruising deepened and darkened and spread with gravity, but the hematomas did eventually start to reduce in size, as did the general abdominal swelling.  I had a few more post-op complications, including a UTI and phlebitis, that saw us spend our Christmas afternoon and evening at urgent care, but none of them turned out to be anything major and all gradually resolved. 

I wove in calls to people close to us, initially just wanting to talk about the hospital stay. I hadn’t spoken to anyone while in the hospital and hadn’t felt up to texting much at all, so all the details were new to everyone but Hale and me. 

I wanted to assure everyone that I was healing and the surgery had been a great success. I suppose I also needed to process what had been a traumatizing experience and didn’t want to rush right on without doing so.

The next round of calls was about the ‘good cancer’ news.  Although telling your mom that you definitively have cancer and hearing her reaction reinforces that there is no ‘good cancer.’ 

I struggled mightily with wanting to reassure people that the prognosis was good, while also wanting to be honest about all the uncertainty and upcoming diagnostic investigations that might or might not change that.  How much hope did I give people?  How much realism should I convey? How to share the uncertainty that the diagnosis was only preliminary and could be worse without alarming them?

During my first week out, I was stunned to receive an email from Ali, our nurse in Whangarei, just checking in because she’d been thinking about us.  The kindness of Kiwis will never cease to amaze us.  We wore our pounamu with a new fervor – seeing it as a protector but also a reminder to carry that kindness with us and be like Kiwis rather than descend into the mad rush of rudeness so prevalent in US society today.  Another benefit of a life of international travel – bringing back the good things you find in other countries.

And through it all, I struggled to figure out how to wrap my head around our new reality.

Up at 3:30, out the door before 5, and at the hospital early for our 5:30am check-in, we were more than ready to be the first surgery of the day.  As we waited for my name to be called by the nurses, I said all the cliché overly dramatic things to Hale but mainly we just stood there feeling ready.  I desperately wanted the tumor out as I had started to envision it growing and spreading within me.

Everything went smoothly except for getting an IV line in and getting blood out for final tests, and soon I was on the table with the surgical team surrounding me as I was put under by the anaesthesiologist whom I had met (and inexplicably chosen to cry to) in the pre-op room.  Next thing I knew, I was floating in and out of consciousness in post-op.

My surgeon appeared and told me everything went extremely well. She took the tumor out intact, took all the organs successfully, and very surprisingly didn’t find the widespread cancer she had anticipated.  The immediate pathology that they do during surgery (frozen section) did confirm that it was cancer, but she felt very good about what else she saw in there. 

This was hard to take in given the expectations and my loopiness.  Later when I saw Hale, he confirmed all of this based on his more lucid conversation with her after the surgery.  While feeling relieved, I was really too focused on the present to take in the big picture.

For hours I drifted in and out waking to pain in my belly and throat.  The nurses gave me ice chips and drugs and the day wore on.  It turned out that they were awaiting a room on the oncology floor to be vacated so I could move in.  Sometime in the evening that option disappeared and I switched to waiting for another room on a general surg/med floor. 

There was a scare when someone coughing with the flu was brought into the post-op ward, where we were all separated by only partially closed curtains.  Then things quieted down as all patients left and soon it was almost only me.  The nurses were very kind to me – getting me up for my first stand, sneaking Hale back in to sit with me, and switching me from a gurney to a hospital bed. 

Around midnight they wheeled me to my room and we celebrated that I had scored a private one.  Finally Hale could go home and I could get some rest. 

Or so I thought. Inexplicably the night nurse decided that my catheter needed to be removed at 2am and subsequently reinserted when my bladder didn’t work on its own.  Then she couldn’t get that put back in and had to call for help, all while I lay crying, feeling helpless, alone, and exhausted.  An hour or so after finally falling asleep, the technician arrived to draw blood and an hour after that, the nurse with meds, soon followed by the nurse’s aide to take vitals and then at 7 the hall was alight with noise as nurses changed shifts. So much for sleep!

The next couple of days were a series of ups and downs. 

Pain and discomfort. Happiness at being able to walk a little further each day, with my walker and Hale by my side. Sleepless nights. Eating solid food. Endless pokes, prods and blood draws. Delight at my first shower and no longer being greasy and malodorous. Uncooperative bodily functions and the various unpleasant medical compensations. Doctor and Nurse Practitioner visits to check on my progress which seemed to be improving. A swollen and painful hematoma along my mid-incision.  Hale’s full day company every day and texts and flowers from family and friends. 

Several absolutely outstanding nurses who showed me such care and helped me understand just how one nurse can completely change a patient experience.  They far outweighed a couple of terrible substitute nurses who left me feeling unseen and afraid for the nights. Lovely nurses’ aides who, despite being overworked, looked after me with competence and compassion.

Then things started turning for the worse. 

I was anaemic, natural right after surgery but which should have been getting better by now rather than worse. They discovered internal bleeding and another hematoma and took me off ibuprofen since that could cause the bleeding to worsen. And off the blood thinners necessary after surgery to prevent clots. I lay awake at night worrying that it would worsen and trying not to google what could happen. 

And then came the sudden onset of nausea and vomiting after Hale had gone home one night.  For the next 36 hours, I expelled up everything I had eaten for three days.  Back in went the IV for fluids and anti-nausea meds.  Back in went the catheter.  Back on went the leg pumps to prevent clots since I was not moving on my own.

No more Tylenol since I couldn’t keep anything down.  Extreme pain in the incision from the retching. (You are not even supposed to cough, sneeze or blow your nose after this surgery, let alone uncontrollable spasms. A nurse later told me I was lucky I hadn’t ripped open my ten inch wound like she had seen happen to others.)  Waking up suddenly throwing up into the little green bag.  Or worse, not making it into the bag and covering myself in vomit, with no hope of enough strength to shower – which would be impossible anyway with all the tubes attached to me. Extreme exhaustion to the point of being unable to keep my eyes open even when awake. 

Calls in from my doctor and visits from the weekend attending doctors as they tried to figure it out.  They determined I had a prolonged ileus, which is basically where the top part of your digestive tract is paralyzed so nothing makes its way down and eventually comes up instead.  The prescription was “nothing by mouth” to let the intestine rest and begin working, then gradual reintroduction of ice chips, drinks, bland soft food in tiny portions.  And definitely no hope of going home soon.

Great nurses got me through this.  Despite all Portland hospital systems going into Crisis Standard of Care due to the tripledemic of RSV, Flu and Covid on my third day in hospital, my nurses took excellent care of me and treated me efficiently yet with kindness.

If you are a nursing professional, thank you. Please know that you are often the bright light in a dark night for your patients.  We know how overworked and undervalued you are.  We know you have lives outside the hospital and that you have both wisdom and stories to share with us.  We appreciate you.

I began to get better.  The anaemia improved.  The ileus started to resolve. I could eat a few bites of food, and even better, digest it. (I didn’t, however, manage to eat any of the multiple plates of turkey with gravy, mash with gravy and extra gravy that they kept bringing to vegetarian me.)  I slept. My strength started to return. The tubes came out. I showered. I was walking again, eventually working my way up to 10,000 steps in a day around the same hospital corridors.

And then, very quickly, I was hitting all the milestones they wanted and was nearly ready to be released.

But first, my one week post-op consultation with my oncologist to go over my pathology and next steps.  This had been scheduled for her office, but since I was still in the hospital, she came to my bedside instead and combined it with a physical check.

She told us that we were extremely lucky.  Not only had she not seen anything scary in there (other than the large tumour of course!) the pathology concurred in not finding any definitive signs of cancer beyond the tumor. 

I have cancer but none of the other biopsies came back positive so there was no evidence that it had spread anywhere in my abdomen, which would be the most likely place for spread.  Because cancer is tricky, she couldn’t rule out that it hadn’t spread there or to the chest or shoulder where the worrisome spots had appeared in my CT scans.

The initial diagnosis was ovarian cancer, but a quite rare form of it.  This form has pros and cons.  It doesn’t have the same extremely high recurrence that the common form of ovarian cancer has, but if it does recur, it is highly likely to mean a very quick end because it is chemo resistant. 

This form of cancer is also tricky to diagnose because its pathology has a lot in common with GI cancers.  Indeed, it is sometimes found on the ovaries, masquerading as ovarian cancer whereas that tumor is actually a metastasis from the pancreas or colon, etc. which is the primary cancer source.

Therefore the next six months (at minimum) will be a time of intensive monitoring and diagnostics.  I’ll have a full GI workup with the specialist whom she consulted before and after my surgery.  He’ll do all the scopes to see if anything is lurking in there.  I’ll have physical exams and blood draws to check my tumor marker levels.  And I’ll have CT scans to monitor my neck down, check for anything new growing in the abdomen, and generally be on the lookout for anything suspicious.

If all goes well and I am clean for those six months, I will move to checks every 3 months for 3 years, then every 4 months for 2 years and finally once a year after 5 years.

My doctor seemed shocked that we weren’t turning cartwheels at the news – I had cancer but it was likely of the good variety!  I was grateful and relieved – this was so much better than what we all feared and believed the outcome of surgery would be.  But I was also extremely sad. I have cancer. 

I felt bad not being happier for her and able to exhibit the joy she expected, but given the choice, I would have preferred “benign” to “cancer with no evidence of spread.” (Writing this now with a month of perspective, I can see how this translates into the future too – I need to learn to be grateful for every clear scan moving forward and not dwell on the fact that I have the uncertainty and dread that cancer carries.)

We were filled with questions, but she had to dash off to her next appointment and promised to be in touch soon.  She told us she was arranging to have my biopsy slides reviewed by another pathologist just to be sure.  I am so grateful for her thoroughness and for her expert and skillful care.

The nurse arrived, took out my IV insertion ports, gave us our discharge packet, popped me into a wheelchair, and we were free!

We spent the weekend adjusting to time zones and to being in the US, buying all our necessities, and settling in to our rental.

But we also went out to the Columbia River Gorge for a hike on Eagle Creek trail.  It was somehow fitting that this was an experience we hadn’t been able to have in the final three years before we left due to the terrible wildfire that had closed it for years, and now we were able to. 

We even saw salmon spawning in the creek, something we had not seen in our ten years living out here.  Breathing in the smell of the PNW and the beauty of the area refreshed us and gave us stamina for the week ahead.

Monday morning we jumped straight into preparing for surgery.  Day one was a CT scan and blood draws.  I had my first reaction to CT contrast dye, but nothing too bad- just a bout of severe itching.  (I also had my first “ugh, people actually like Starbucks coffee” moment after I paid twice as much as we were used to for a pretty lousy flat white.  Not sure which was worse!) 

We took the CD of my New Zealand CT and Ultrasound scans down to another Kaiser facility in Portland so they could upload them for comparison (something they were never able to do.) Hale got his COVID booster and flu shot – neither of which I was able to do so close to surgery so we remained hermits as much as possible.

On Wednesday, we had our consult with the gynae onc surgeon which lasted half a day and felt very thorough.  We were grateful for the time she and her team gave us, as that had been a big fear returning to the US medical system.  Her efficient, confident, and intelligent demeanor inspired confidence in us. 

She explained the surgery and what she would be taking out – total hysterectomy and BSO which means ovaries, fallopian tubes, cervix, uterus, and omentum, along with the tumor of course. She would also take samples of the peritoneum and lymph nodes and would remove anything that looked cancerous. Meaning that if she needed to take part of my colon, etc., she would.

She also showed concern for all parts of us – acknowledging the trauma of hearing a cancer diagnosis and the impact it was having on every aspect of our lives.  She seemed surprised we weren’t sobbing in her office, but we’d had the benefit of multiple doctors giving us this news and then time to steel ourselves for this meeting so that we could absorb as much as possible.  She referred us to a cancer therapist for counselling, a service we are using and finding helpful. 

Her news was not only as grim as Tom’s, but worse.  Things didn’t look good. My tumor markers were all high, even higher than they had been in NZ just weeks ago, and one had skyrocketed from high to astronomically high.  My CT scan on Monday had picked up spots in my chest and an enlarged lymph node in my shoulder.  She wanted me to go that afternoon for a neck and head scan to see if the node could be biopsied and to check if there was any spread to my brain. Frankly, it was terrifying.

When we were finishing up, I found the courage to mention to her that I had seen FIGO stage 3 on the MDM report – hoping against hope that she would assure me this was a mistake.  Instead she looked at me and said “yes, and with the new spots, we may be looking at stage 4.”  I can assure you that she got to see some emotion from me then.  How on earth could this be happening?

Her nurse came in and went through all the details around pre-op, time in hospital, and post-op plans.  She was thorough and we left the office feeling ready logistically for what was to come.

I had already scheduled a mammogram for that afternoon, simply because I was due, and while there they snuck me in for the head CT scan.  I’m so grateful that it happened quickly because too much time to think about spread to the brain would have been crippling.  It was only a day before we had the excellent results that my head was clear.  (Which gave us something to laugh about too.)

Next up were blood draws, an EKG, and pre-op appointments to ensure I was healthy enough for surgery and anaesthesia and to blood type me in case of the need for a transfusion.  And then a nerve-wracking Covid test three days in advance.  I passed them all with flying colors which was a lovely contrast to the onslaught of distressing test results.

We had a final call with our oncologist surgeon on Friday and she told us that she had presented my case to the tumor board and had been discussing me with her colleagues.  My astronomically high marker indicated GI cancer rather than gynae cancer, so she consulted with a GI specialist.  Everyone was in agreement that while they could do a thousand things at this point to diagnose, it was better to proceed with surgery.  Doing a biopsy or a colonoscopy/endoscopy would delay surgery and clearly things were getting worse rather than better the longer we waited.

Throughout the week, Hale and I struggled to live up to our new mantra of “make it suck less.”  We snuck in walks along the river, ate ice cream (despite my oncologist telling me to cut out sugar, although I did listen to her on alcohol) and snuggled up to lame holiday romcoms to try to avoid thinking. This isn’t a personal or relationship blog, so I will only mention this once, but I cannot fathom a better, more empathetic, caring, and supportive partner than I have.  In the midst of feeling like my string of luck was at an end, I paradoxically felt that I was the luckiest girl on earth to have him at my side.

I did a round of calls with each of my family members to prepare them that the surgery would likely reveal it was cancer.  I had downplayed the chance of it earlier so as not to cause undue anxiety and because I didn’t want to ruin their Thanksgiving together.  I still didn’t share the scariest parts with them.  What a progression I had made in three weeks – suddenly cancer wasn’t the scary part, cancer spreading throughout my body was. 

I struggled mightily with guilt during this time period.  I had destroyed Hale and my plans for summer in Welly, a year in Australia, and quite possibly the rest of our lives.  I was causing anguish for Hale, my mom, my siblings, my in-laws, my nieces and nephews, and my dear friends.  I’ve had such an incredibly fortunate life that I was often the comic relief character – the one who could be counted on to bring levity, adventure stories, and fun to a conversation.  Suddenly I was just the opposite – I was preventing people I loved from sleeping at night. 

I knew this wasn’t justified.  Cancer was doing all of this, not me, but I couldn’t shake it.  Weeks later when talking with our cancer therapist, I finally started making progress when he used the expression “uninvited” with us.  I had a term I could grasp onto now.  When I felt guilt for hurting someone with my news, I could remind myself that I didn’t invite cancer into my life and therefore into theirs.  Cancer crashed this party and now we all just wanted it to leave.

The Initial News

“Hi.  I’m Courtney.  I’m the gynae doctor and I’m sorry to have kept you waiting.  Why don’t you tell me what you understand at this point?”  Hale and I shook her hand and looked at each other wondering what to say as we sat in the tiny curtained off portion of the Emergency Department where we’d spent the evening, interspersed only with a trip down the hall for an emergency CT scan.

“The doctor who came in before you said the CT confirmed what my ultrasound this morning showed – that there is a mass in my belly and it looks malignant and you would be in to talk to us.”

Her compassionate face told us it was true and she went on to spend two hours with us, talking us through the scans, the possible diagnosis, and the next steps.  Her shift was over but she stayed until almost midnight to care for us mentally and emotionally, whilst also ordering additional blood tests and ensuring that my body was functioning enough to be allowed to go home for the night. 

The drive home was surreal – both because of the wild wind and rain storm that was howling outside the car, tossing tree limbs onto the partially flooded curving roads, and because our minds were mimicking those effects as the news reverberated within us.  At home, we were only safe from the external chaos. A drink and crisps for 1am dinner did nothing to quell our minds before we slipped into bed for the first of a long string of sleepless nights.

Backdrop

How did we get here?  Aren’t we the luckiest kids on earth, retired early traveling the world without the usual worries of workaday folks? 

Yes, and that privileged position will continue to serve us as we face this challenge. 

But how did we get HERE?  Here – to a likely cancer diagnosis?  Let’s go back in time a few months from November 2022 to July 2022.

I’m small and thin, due to both nature and to a healthy lifestyle, but like many US women, I worry about my weight and beat myself up over my body shape.  Therefore when in July through October I noticed my lower abdomen growing, I was sure that I was experiencing the much proclaimed “as a woman, once you hit fifty, you better watch out or you will suddenly develop belly fat” syndrome.

In July I had started attending Pilates classes at my wonderful physio’s practice in Wanaka and felt my body growing stronger, longer, and sleeker… except for that belly that kept sticking out more.  Maybe it just looked like it was larger because the area around it was leaner?  Maybe it was the cake at the café with our flat whites?  Maybe it was my lousy form in exercises that was causing my belly to protrude instead of flatten? 

In the midst of this timeframe, one day whilst attending Pilates in Queenstown during our month there housesitting, I had a terrible incident with cramping in my stomach that left me bent over, hobbling out the door, calling Hale for a pickup, and having him load me into bed where I stayed for 24 hours in severe pain googling what could be wrong. 

But once I felt better, I put it in the back of my mind as just another of my annoying GI issues.  I went back to Pilates in Wanaka and kept growing stronger and fitter….and my belly kept swelling more and more.

In November, up in our beloved Whangarei Heads, I called to book in with a GP for our planned December and January in Wellington and was informed they wouldn’t be able to see me this year as a non-enrolled patient (they’d made an exception the year before but were now too busy.) 

That, and a night of stomach pain, convinced me to just go ahead and see an unknown doctor at the White Cross urgent care in Whangarei.  I’d been to them the year before for a breast lump that turned out to be fibroids so I was certain it would be another nothing as I sat there for hours in the waiting room, regretting wasting the time.

The doctor looked at my abdomen, asked a few questions and told me that he was going to send me for some bloodwork, refer me to gynaecology, and that I should schedule an ultrasound to get an idea what was going on in there.  He mentioned that one of the blood tests would check for ovarian cancer, just to rule it out. That of course caused a bit of concern, but I bopped out of there mostly unconcerned, did the blood draw, and scheduled an ultrasound for three days later hoping that it would reveal a GI issue that could be easily solved. 

The ultrasound lasted an hour with the cheerful and kind sonographer taking 66 pictures and two videos and stepping out to talk to her doctors while I prepped for the intravaginal one after the external one. 

How this didn’t clue me in is a mystery (or proof of the mind’s ability to deny), but she kept up a great act that she was searching and searching and not finding anything. 

After that, I swung by the White Cross to enquire about my blood results and talk to them about how the gynaecology department wouldn’t see me because the original doctor hadn’t done a pelvic.  They said he should have and brought me in for a pelvic right then.  This doctor said she would ensure that my ultrasound results and her pelvic exam notes (nothing of concern) made it to gynae and I would hear from them to schedule. 

The receptionist gave me my blood results and the CA125 (tumor marker that is used to track ovarian cancer treatment but cannot diagnose cancer) was 65 (normal is below 35).  This concerned me, but not even to the point of mentioning it to Hale when he picked me up on his way back from wing foiling and we made a quick grocery stop then started towards home.  Instead we shared stories of our days.  Part way there came the call.

“Hi Susan.  This is the doctor you saw today.  I have your ultrasound results and they found something.  You need to have a CT scan to investigate.”  Me: “Okay, where should I schedule that?”  Her: “Go to the Whangarei Hospital Emergency Department right now.”  What???  A couple of deep breaths and we turned the car (and, although we didn’t know it at that point, our lives) around and headed back into town to sit in 5pm traffic.

At the ED, I first heard the word “mass” from the triage nurse at check-in as he reviewed my referral. Suddenly it was all becoming scary. 

They were very busy and therefore, between waiting to have the CT and then waiting for it to be read by a doctor in Australia, we had a few hours of trying to grasp this before we reach the point in the story of Courtney walking in. 

Courtney explained that both sets of imaging indicated that I had ovarian cancer.  When we asked her if it was possible that the mass was benign, she said “it’s always a possibility but it looks highly likely that it is malignant.” 

She gave us a few minutes to cry and talk while she went off to organize things and upon return, gave us the details.  The mass measured 20cm (8 inches) so was taking up the majority of my abdomen and looked like it was in the ovary region.  It had malignant characteristics and there was also a large amount of ascites detected, which is a fluid that cancer causes in your stomach.

Next steps were for my case to be discussed at the Auckland Multi-Disciplinary Meeting.  This is essentially a tumour board where oncologists, radiologists, surgeons, doctors, and nurses discuss the complex cancer (and possible cancer) cases that have just been discovered in the North Island and determine a plan of action for each. 

My case would likely be discussed not the coming Wednesday, but a week later – leaving us almost two weeks until we would know their recommendations.  She provided us with the name and number of the Whangarei gynae nurse Ali who would be presenting my case and whom I could call at any time with questions. 

We also talked with Courtney about our unique situation.  We’re full-time travellers and not New Zealand residents.  We have visas that were due to expire at the beginning of February.  We don’t have NZ health insurance.  But we love the NZ health system and the way it cares for everyone without profit as a motive. 

She told us that the choice would be up to us – stay and be treated or fly back to the states.  But she cautioned that if I needed chemo, I would need to start around three weeks after surgery and wouldn’t be cleared to fly for six, so choosing surgery here would be committing to follow up treatment here also.

Immediate Reactions

After our midnight return home from the ED and a sleepless night, Friday morning brought a mixture of despair, detachment, and denial for us both. 

I’m too healthy to have cancer.  I’m dying.  They are totally wrong.  There’s something terrible growing inside me.  They have no idea what they are talking about.  Oh that poor couple who just received this terrible news – I feel sad for them but they aren’t us.  I’m scared.  It’s just a big ball of Whitaker’s chocolate in there.  Cancer?? 

And over and over again, the big question – when and how will we know for certain?

The planning side of our brains started on the Stay or Go question.  What we knew for certain right then was that the mass had to come out, and soon. The mass was pressing on my organs.  (Indeed, Courtney was concerned that my bladder was already compromised and had cautioned me on things that should cause us to immediately go back to ED for emergency surgery.) 

I called Kaiser (my HMO in the states) to start the process there.  Over the course of the next five days, I became increasingly frustrated with the lack of response, promised call-backs that never came, and slow movement on referrals.  How could I have confidence that they would prioritize me the way they were here in Aotearoa if they wouldn’t even let me speak to a gynaecologist or arrange for a case manager from Care Away from Home to contact me?

On Monday, we decided to go into the Whangarei hospital and see if we could speak to Ali in person.  The additional blood work had showed that two more tumour markers were elevated (one quite significantly) and that had us pretty frightened.

For our US readers, imagine this.  We walked in to the gynae department without an appointment and the nurses knew who we were, offered us coffee or tea, and said they would pull Ali out of a meeting to talk to us.  When we insisted we had all day and didn’t mind waiting, another nurse sat with us and answered questions for 30 minutes before Ali joined us and then the two of them talked to us for an hour.  They were the kindest and most compassionate professionals we could have hoped to meet. 

Ali told us that it wasn’t necessarily malignant and we shouldn’t think that yet.  The mass had characteristics of both benign and malignant tumours so while we might know more after the experts at the MDM reviewed it, we likely wouldn’t know for certain until surgery.  The tumour markers were concerning, but not diagnostically accurate.  We left feeling strangled by uncertainty, but with some hope back in our hearts.

With that hope, we decided to simply tell our family that there was a mass and that I would be undergoing open abdominal surgery to remove it, along with my uterus, cervix, both ovaries, fallopian tubes, and my omentum, a major surgery that would involve 3-6 days in hospital then 6-8 weeks of recovery at home.  We downplayed the risk of cancer so as to save them the emotional tailspin we were experiencing.  After all, it might not be so why cause unnecessary worry?

Before calling family, I “practised” by telling a dear friend. I told her the whole thing which felt good, but also made it a bit more real.  We decided to hold off on telling any other friends until we knew more.

Over the next ten days we vacillated between hope, worry, fear, anxiety, denial, and frustration with not knowing.  I measured my belly each day to see if the tumour was growing rapidly.

We were overwhelmed with terminology and trying to understand the notes Hale had taken in each interaction with our medical team. We tried not to read obsessively, but we did. 

Our lovely nature walks turned into a marathon of listening to podcast after podcast about cancer.  This helped us to educate ourselves, to prepare for what was to come, and to learn coping mechanisms for the crushing fear. 

With our usual lame sense of humour, we decided to call this just “a ‘bump’ in the road.”  We also came to terms with the knowledge that even if it was benign, we needed to abandon all our upcoming plans.

Immediate Adjustments for our “Bump in the Road”

Our plans had been to stay in Whangarei Heads until the end of November then drive down to spend two months in Welly before flying to Australia on 31 January, ten days before the end of our last visa and just over 39 months after first landing on the land of the long white cloud.  Then we’d have nine months of touring Australia before flying to the states for our much loved niece’s wedding in October. 

I’d lined up a mix of Airbnb stays and housesits, including a primo one for the holiday on the shores of Wellington harbour in our favourite suburb Seatoun.  I’d booked the flight to Melbourne, the hotel and Airbnb there, the ferry to Tas, and all the other transport, even including the flights to the states for Oct 2023.  Hale had just received his long term visa and I was due to submit my application. 

Everything was on track and we were both looking forward to two months in the wonderful little city of Wellington where Hale could be on the water every day and I could soak up the bays, tracks, and city life when not playing with cute cavoodles.  

For at least a week, I stubbornly refused to let this go.  I could have the surgery and still do all that right?  I’d just take it easy.  Since it surely wouldn’t be cancer, we didn’t need to change anything.

Hale accepted this as patently unrealistic long before I did, but graciously allowed me to come to terms with it (and everything else) in my own time.  Before long I was contacting home owners to back out on our commitment to care for their pets while they holidayed away and feeling terrible about it.  The understanding and concern they showed us buoyed me as I went on to cancel all the rest of our plans.

We were constantly wrestling with staying or going.  Although we maintain a tight budget, we are fortunate enough to have been able to pay for surgery in NZ out of pocket if that was our decision.  Ali helped secure a quote and it was extremely reasonable even as a non-resident.  We were overwhelmed by the care we were receiving in Whangarei and could anticipate in Auckland. I was leaning towards staying but we had the visa issue hanging over our heads.

Finally the tide turned at Kaiser and I heard directly from a competent and efficient nurse in the Gynaecological Oncology department in Portland.  (Such a mouthful – we’ve decided it is less intimidating and easier to stick with the kiwi term gynae onc.)  She explained that I would have a consult with the gynae onc surgeon on Nov 30 and surgery on Dec 6 or 7.  They planned the same total radical hysterectomy and bso as they were anticipating in Auckland.  Prior to that I needed to have bloodwork and a CT scan done in the US.  This team wasn’t wasting any time once I landed on their desks and I was pleased that they matched the urgency we felt here. 

Looking at the calendar, this meant we needed to return to the states by the 26^th if we were going to meet this schedule.  But the Auckland MDM was meeting on the 23^rd and we didn’t want to leave before we received their recommendation.  To top it all off, the 24^th was US Thanksgiving, meaning we were looking at one of the busiest air travel weeks of the year. 

Happily, we found that no one flies into the US on Thanksgiving itself, so we booked flights leaving the 25^th from NZ and, with the magic of the dateline, arriving the 25^th in the US.  Using points, our tickets were refundable so we could keep our options open.

But remember that we had been living in NZ for three years and had all the accoutrements of a fun life there.  First to go was my bike and bike rack.  (I could rent an ebike in welly when this all turned out to be nothing was my way of staying in denial.)  Since we were taking the bike to the Hospice Op Shop, we might as well do a necessary culling of stuff we didn’t need anyway. 

Hale sold the roof box locally and offloaded a bit of foiling kit too.  He looked into selling the car, but couldn’t find rental cars that we could use to get down to Auckland for our flights. Since we still didn’t know if we were leaving, we held onto it.  We did get a quote from the large used car dealer Turners which was predictably but disappointingly low.

Trying to reserve accommodations in the US just a few days before we would arrive was challenging, especially given that we had new requirements.  Move as infrequently as possible, no moves around the time of surgery or shortly after, no stairs, easy to get in and out of chair, couch and bed, shower I could safely step into and Hale could be in to assist, etc. etc.  And we wanted cancellable since we still hadn’t made up our minds.

Our long-time landlord in Vancouver helped us out with the first segment and I found a suitable spot for the second and third week post op.  And then, in a fit of emotionally needing something good to look forward to, I irrationally booked a very expensive non-refundable place on the Oregon coast for the month of January.  I figured we could travel into Portland for doctors as necessary and for chemo if necessary. 

On the 23^rd, we went into Whangarei hospital and met with Ali, Delia (a gynae Dr) and a trainee doc.  They told us the bad news.  The MDM was almost certain that it was cancer and saw several indications that it had already spread beyond the tumour into the pelvic area – including on the peritoneum (abdominal lining), in the Pouch of Douglas and possibly nodules elsewhere. 

They proposed surgery on the 7^th – matching exactly what the US proposed schedule was – and advised us that chemo would be likely as soon as I recovered enough from the surgery.  They had scheduled us to meet with the surgeon in Auckland the next morning to discuss. 

They cried with us and hugged us and spent hours with us.  Delia even offered to arrange a zoom call to help us tell our families.  

We told them we still didn’t know what to do, but with this news, were leaning towards flying to the states and we didn’t want to waste the surgeon’s time.  They insisted that it was part of caring for us and no one would consider it wasted time so we decided to do it. 

They advised us on flying home and the risks of blood clots with cancer and arranged for us to talk to the nurse in Auckland the next day about anticoagulants and compression socks for the flight.  They loaded us up with hospital grade masks for the long days of travel.

After a coffee stop for a deep breath and a discussion, we drove home and went into high gear.  I reserved a hotel for that night in Auckland and we started sorting and packing.  We sold our coffee machine online in an hour.  We stuffed our 2 suitcases with what we wanted and filled rubbish bags with what no one would want.  We were blessed to be staying with the sweetest of all hosts, Lil, who told us to leave everything else and she would distribute it to family or take it to the op shop. 

We had told Lil earlier and she had already shown us such kindness – understanding our feelings, urging us to stay positive, and gifting us with a beautiful and spiritual Manaia pounamu necklace to protect us in this chapter of our lives.  Knowing that she had been receiving treatment for cancer while we stayed with her in 2021, we knew she understood at a deeper level than most.

We had everything packed into the car and were on the road south to Auckland just as rush hour finished in Whangarei.  Our heads were spinning faster than the wheels on the car now that we had time to sit with the news on the drive down.  Once in Auckland though, we moved into busy mode getting into the hotel and planning for the next day.

Our hospital visit began with a resident doctor who was cautious in her approach, starting with the same “tell me what your current understanding of the situation is” question.  Then Tom, the gynae onc surgeon, joined us and was very frank in sharing his thoughts, while still treating us so humanely and kindly.  Every single medical professional we dealt with in New Zealand showed that they cared for us as people, not just as patients. 

He showed us the scans, pointed out the concerning areas, and told us that he felt it could very well be advanced stage cancer.  Therefore he recommended that we return to the US since we would have more access to clinical trials and targeted therapy than we would in New Zealand.  We decided to go.  He offered to talk with our surgeon in the US if they felt that would be helpful and asked us to let him know what was found.

A nurse showed us how to inject the anticoagulant before the flight and outfitted me with haute couture white compression socks and we left the hospital about noon.  Hale dropped me at the hotel and went off to sell the car and take the bus back downtown.  We took a big loss by selling the car that way, but we had used it for over three years as opposed to the original plan of nine months so felt that we won that game anyway.

Due to the last minute booking, we had to move hotels to one just next door. While I was waiting to be able to check in, I treated myself to a feel good pedicure with Christmas colours.  I figured I would be spending a lot of time looking at my toes whilst in bed and wouldn’t be able to bend to tend to them on my own for months, so why not. 

Once we were in our room, we did the final repack in preparation for our flights the next day, had a drink at the bar, and grabbed a takeaway for dinner.  (By this time I was starting to panic about catching covid and having my surgery delayed.  It was too close to surgery for a booster or a northern hemisphere flu shot once back in the states, so I just had to be very careful.)

On 25 November, our time in Aotearoa was over. (for now!) I took a last walk on the Auckland harbour front, said my goodbyes to this haven that I love, and we were off to the airport to hang out in the lounge and await our flight to San Francisco. 

The flight back was uneventful.  I was glad we had splurged using extra miles to pay for business.  We’d done it because it wasn’t that much more than economy for once, but also because when we booked we’d had no idea just how uncomfortable I might be by then with the mass growing and pressing on things.  It turned out to be great to have my feet elevated and be able to walk as much as I wanted as my mind would not rest about the possibility of blood clots and the ominous FIGO stage 3 I had seen on the notes Tom provided us.

Arriving in Portland, the cold rain and already dark afternoon was ultra-depressing and a wake-up call to the reality that we had truly left behind not only our enchanted travel life, but also summer.