December 27th, 2018
On the morning of my 45th birthday, I stood before the bathroom mirror’s harsh, yellow light, looking at a lump where my armpit should be. I’d felt something under my arm in the shower, a bulge where the hollow of my armpit is, the ‘axilla’ as I would learn to refer to it. The lump was alien enough to be worrisome. When I lifted my arm up, the raised spot looked like half a tennis ball was stuck under the skin. It was soft to the touch, and at that moment, painless. Happy birthday, James.
I showed my wife, who immediately looked concerned, “That looks like a lymph node, is it hard? You should get it looked at”. I had no intention of doing anything that day, I think my exact words were “I am not going to the fucking doctor on my birthday.” I resolved – unwisely, in retrospect – to wait and see. Dr. Google said If it got any bigger, harder or didn’t go away, I should go and get it looked at. When? Who knows. This was really the stupefying cloud of denial and fear, leading to poor decisions
What the hell is wrong with my eyes?
Earlier, around Late September, It had become apparent something was abnormal with the vision from my right eye – the good one – in that a little patch of my visual field had a distinct blur, as if there was Vaseline smeared on it. This got bad enough that I was worried the retina was at risk of detaching (lottery-like odds of this happening to both eyes) but a trip to the eye doctor revealed absolutely nothing unusual, and It felt better – a good example of white-coat syndrome, as I would later realise. A bit like the way toothache stops in the dentist’s waiting room.
As Autumn receded and Winter started to take hold, I realised my vision was not improving, daily tasks like driving were becoming difficult – depending on the angle of the sun and cloud cover, It could be very difficult to see clearly. In January, I had a light bulb moment: Could these things – this lump and my sight – be related? I was starting to feel the first nips of panic, for such a condition could potentially be very serious. Did I have a big, dangerous cancer hiding somewhere? Was I already too late? It was strange, because i felt absolutely fine. The only physical symptoms I had were the lump and vision problems, which is fairly bad, I suppose. I hadn’t been ill for months, and I always got colds in Winter.
The end of the beginning
I couldn’t get a doctor’s appointment until March, and this was hardly a job for a walk-in centre, so I resolved to go to the emergency room. It was January 29th.
Medical staff are careful not to give anything away, but they don’t always hide their emotions that well. On lifting my arm up, it was clear from the ‘ohs’ and ‘whoas’ I should have got it examined earlier. I got a minor telling-off from a nurse to that effect, and the doctor, whom I swear was barely a day over 20 informed me I had to have a CT scan, the first of what would be many.
…soft tissue material likely represents a Rokitansky nodule
related to a mature teratoma. The lesion measures 10 cm
Jesus Christ, 10 fucking centimetres? Teratoma? Big relief, that’s just a harmless, big ‘ole fatty lump. I get a referral to a surgeon and am sent on my way, hugely relieved. I would need to have it removed, but that’s no big deal, right?
Not so fast..
My ‘surgical consultation’ was with a typically brash but professional general surgeon who promptly went on to scare the shit out of me. He told me that he did not want to operate until he had a biopsy, as he was concerned it was lymphoma. Lymphoma is not a word you want to hear, and I had already persuaded myself this was not serious. The Biopsy came round a couple of weeks later, and I reported back to the hospital to have it done. Essentially I had a local anaesthetic and then the physician’s assistant uses ultrasound to poke around with a huge needle to identify and capture some samples. The first thing that happened was I started leaking, so the fluid had to be removed. In totals 225cc of reddish/pink stuff was drained out; the swelling all but disappeared, like a deflated balloon. I left with a warning that there is a risk of infection, and to be watchful. That turned out to be an interesting bit of foreshadowing. Meanwhile, my arm felt normal for the first time in weeks. It wouldn’t last very long.
The biopsy results came back as inconclusive, by now this wasn’t surprising, and this pattern would repeat for some time with my eyes, too. Nobody seemed to have any idea what the hell was going on.
It would turn out that my case was ‘rare on top of rare’, to quote one doctor.
A frightful referral
The surgeon called me, and casually notified me he wanted me to see an oncologist. I knew full well what that meant. I was worried sick. The appointment would not be for two weeks, plenty of time to tie myself in knots. In the meantime I had undergone an MRI to try and get to the bottom of my eye problems, and that had a neutral result too. Whatever was going on, it was not in my brain, thank God.
The biopsy site got infected on the day I had to see the oncologist, of course. This doctor was a mild-mannered Indian chap, and he was not able to tell me much I didn’t already know, outside of the fact a gang of them had discussed my case at a ‘tumour board’, which sounds like the shittest party ever. They only knew that it wasn’t a teratoma, because those don’t grow this fast. I would need another scan and lots of blood work. The proposed scan would be a PET, and would be six weeks later. This wait was important to ‘allow things to settle’, inflammation from the biopsy could produce a false positive, but more on that later.
The infected site responded almost immediately to antibiotics, but would continue to leak. My wife, ever inventive, devised a dressing using my youngest son’s diapers (much to his annoyance – “you stealin’ my diapers!”) And I continued like this – changing it twice a day – right up until the lump was excised. It leaked a ferocious amount, my morning routine involved pulling off the dressing which would typically be a bloody pulp after soaking through the night. There was a distinct relationship between pain and the volume of the mass, as it filled with liquid, it got painful, so the leak was a blessing in disguise as it relieved the worst of the pressure.
A PET scan involves being injected with a radioactive tracer; essentially it measures metabolic ‘uptake’ of the solution. Cancerous cells absorb this solution at a significant rate. The bottom line is the radiologist gets a 3d image of the body, and can pick out hotspots of high uptake.
The scan was straightforward, it takes about 20 minutes after a 40 minute wait for the solution to be metabolised. I would have to wait to see my oncologist for the result.
Late, in the oncologist’s office the flat-panel monitor showed the images from the scan. Scrolling through the cross section with the mouse wheel, the Dr. indicated the mass under my arm lit up like a stadium in a sea of dark greys and browns. The high absorption rate was pretty clear; a child could read it.
…intense metabolic activity within the relatively large and
lobular malignant appearing mass of the right axilla. The mass
contacts and possibly invades the lateral margin of the right
pectoralis major and minor. Soft tissue infiltration extends from the
mass to the skin surface at the upper right breast with high
metabolic activity at the skin surface,,,
‘Malignant’.‘invasive’ These were words I expected but I had not wanted to read. I still had inflammation because the axillary mass was by now permanently agitated in a cycle of muscular stress, draining and re-accumulating. There was a chance this caused the high-uptake indication.
There’s a paradox when you are unwell and nobody knows what’s wrong with you. You want a diagnosis, no matter how bad, because there is then a way forward. When I had the MRI, I wanted something to be found, despite the fact that this could only be very bad news, and felt despondent when no abnormalities were found. By the time it looked increasingly obvious I had some sort of cancer, I was – in a small way – relieved. I knew what I was facing, what the fight would look like.
Oncology were still a little puzzled, because none of their blood work had shown the slightest trace of anything unusual. This would set the tone for the invesigation that followed. little about this would be straightforward.
The Doctor quite memorably summarised “We don’t know precisely what it is, but it should not be there, and it needs to come out, sooner rather than later.
It did not appear to have spread anywhere, which is a huge bit of luck. I just had to wait for surgery.
Around this time, the leak stopped, and the pain started to become significant. The mass was also harder, feeling more like a waffle of pulpy tissue than a hollow sack. My proposed surgery was three weeks in the future. I was not convinced the mass would wait that long, and I still wasn’t getting anywhere with my eyes.
At this point all I reallly knew was that i very likely had cancer, and was possibly going blind. I was otherwise perfectly healthy; 2019 was going to be great.
To be continued