Chapter 1 – The lead up to Diagnosis

Matukituki Valley, Mt Aspiring National Park. The authors home for a few years.

In the Beginning:

In the early weeks of 2017, it felt like I had been diagnosed with a mystery illness. It took some detective work to figure out the exact flavor of the disease – it was a rare form of mantle-cell lymphoma. It was like a game of Clue, but with a lot more science involved!

I was stuck between a rock and a hard place for a while.

Time Line of This Chapter:

  • The austral winter of 2017 – July through to Oct.
  • Some background leading up to a diagnosis
  • Many tests before the diagnosis
  • How did I feel
  • Technical notes
  • Decision making imminent

Mt Bevan, West Matukituki Valley, Mt Aspiring National Park, New Zealand

My story started with a wobbly knee. I was working for the third time for New Zealand’s Department of Conservation for a six-month period, spanning the summer of 2016-17. The location was the West Branch of the Matukituki Valley in Mount Aspiring National Park, the crown jewel of National Parks and a dream destination for any mountain lover. It was like a fairytale, but with a lot more hiking involved!

Towards the end of my last contract, I developed a wobbly knee, which was a bit alarming in New Zealand’s rugged Southern Alps. For my last walk out for the season, I radioed my workmates to let them know that a modest 4WD rescue might be necessary. However, I never did fall over and the mystery of what was causing it wasn’t revealed for a few more months. It was like a suspenseful movie, but with a lot of solitude involved!

The "Meat" tree by Aspiring Hut, West Matukituki Valley, Mt Aspiring National Park, New Zealand

Plodding alone down the valley in the autumn mist on my last walk out, I came across the “Meat” tree by Aspiring Hut. The tree symbolized the end of a chapter in my life, and the start of a new one filled with health and happiness.

◀ So called because old time deer cullers used to hang their tucker in it “to season”

So-called “front country” tramping had taken off (the new terminology referring to the easy walks in our back country). And the question arose in my mind, “Do I ever want to do this, now overwhelming job, again?”

Looking down West Matukituki Valley, Mt Aspiring National Park, New Zealand. From the Liverpool Hut track

Every day I would interact with lovely people, for sure, but front country types tend to be high maintenance (7am until 10pm) – they’re in an environment new to them and have lots of questions relating to the ticking off of to-do lists (inspired by the internet). These questions usually pertained to weather timing and times to get to other huts.

Discovering a lump in my groin by winter was a bit of a shock. I went to my doctor, who is an old friend and knows me well. The first thing I brought up was my wobbly knee, the second was the lump. After that, the knee got forgotten!

My doctor and I are old friends, so knowing me well he told me the serious truth of the matter, right up front. A blessing – that was what I needed! But of course detail was missing.

I mentioned that after I finished my seasonal job with the Department of Conservation, I had taken several weeks to recover. My doctor replied, “It’s good that you did!” or something similar. Looking back a few months later, I realized this might have been an indicator that the disease was not as aggressive as first thought, but on the other hand, it could be a risky assumption to make.

How did I feel:

  • Felt vulnerable and scared
    • Solution: make an effort to put these aside and deal with clarity, with no wasted energy. Be selective about which emotions to entertain and let ingrained survival skills come to the fore.
  • Felt shocked and indignant – cancer happens to others, not me. Realized sugar habit and emotional health may have played a role.
  • Felt anger briefly, but realized it was useless for personality type.
  • Experienced sudden tears while driving, wanting to be there for my son.
  • Initially held a “victim” persona (“poor me”) which was examined later.
  • Felt desperation and turned to yoga and dietary changes, including reducing sugar and drinking lemon water each morning for hydration.
The old Cadbury Chocolate factory currently being demolished to make way for the new Dunedin hospital

For the moment, the public health system at Dunedin Hospital was running full steam ahead for me. I had a quick surgical procedure to remove my tumor, which and it had been scheduled to happen very quickly.

The old Cadbury Chocolate factory currently being demolished to make way for the new Dunedin hospital.

One Friday, I received a call from a surgeon while I was driving. I pulled over to take the call and he told me that it was urgent to remove the tumor as soon as possible and he had a space available on the Monday. The surgeon also mentioned that his last name was similar to a popular character in a children’s book series, but he assured me that he was much nicer looking and not related.

It turned out that one of my best friends, who was an anesthetist, had worked with my surgeon before and said that he was very good. And indeed, the surgeon was very reassuring and professional prior to the procedure. I was soon taken into the operating room where there were about eight people waiting for me. They started the procedure and I was out like a light before I’d even had a chance to look around.

When I woke up, I was greeted with a welcome tea and sandwiches. I was pleased to find that there were no after effects like queasiness. And I commented on how far the technology has come.

Technical Stuff (Keeping in mind I’m not a doctor! And that at the time I was not only feeling poorly, but the recipient of bad news. Both inhibited my ability to keep track of detail. And frankly it would have served no purpose if I had. Nor would I have understood the detail.)

Before the surgery, I underwent a fine needle biopsy (the sample was too small) and a bone marrow biopsy, which revealed evidence of the disease. I also had some blood work done (which was okay) and a CT scan to help define locations and likely reveal other critical information. Additionally, I had a manual hands-on examination of my immune system circulatory areas and associated places, such as my neck, chest, armpits, groin, and stomach, to look for lumps. Various lumps of various sizes were found.

Each test was reviewed and signed off by the appropriate specialist. I later saw the resulting email that contained the collated information and it was very long and technical, which was reassuring.

🔎 Within days of the surgery, the type of disease I had was identified. The next step was outlining the treatment plan options. I also noticed that my knee was feeling better after the surgery and realized that the tumor must have been pressing on a nerve.

A summation and decisions I thought I had to make at the time:

  • Who to tell about my diagnosis, if anyone, and when?
  • Whether to approach my treatment as a battle or not
  • What changes I need to make in order to survive and become healthy
  • How to best prepare for the future while staying present in the moment
  • Who would be willing and able to support me
  • What I should do first to address my diagnosis and treatment plan

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