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 26th if we were going to meet this schedule. But the Auckland MDM was meeting on the 23rd and we didn’t want to leave before we received their recommendation. To top it all off, the 24th 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 25th from NZ and, with the magic of the dateline, arriving the 25th 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 23rd, 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 7th – 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.
