How did I get here?

As I said earlier, the first time I sat on “the other side,” for reals, - not merely for a prescription refill, an immigration medical to go back to New Zealand while in medical school or a screening test (that's all I ever went to the doctor for), I thought to myself “lets just go through the motions here because it is the right thing to do, get your lymph nodes checked again for reassurance. See the appropriate specialist, undergo the necessary tests and this will all be over.” I kept thinking, you feel so good, are functioning at a high level, haven’t had weight loss etc..But deep down, I knew my body just wasn't right.

What ensued in just over the past two weeks has led me down a road that I always feared. Actually, I still fear what is ahead but thats on small scale to what my brain processes every minute of the day, awake or asleep. Just prior to my diagnosis and leading up to the very day I went for my initial appointment, I had been working on the palliative care unit in Halifax. I was literally that doctor holding hands with patients and their families until their last breaths. Staying late on the palliative care unit to make sure patients got what they needed. It was humbling, it was really eye opening. You can’t write this story, unfortunately, it is all true.

Many people have asked – Were you sick? Did this come on suddenly? If you felt enlarged nodes in your neck, why didn't you go to the doctor? Aren’t you a doctor? Settle down everyone, let me explain.

I first felt a couple of enlarged nodes in my neck last summer. I thought maybe they would go away. Fortunately for me, I had an upcoming appointment to see an ENT (ear, nose, throat) surgeon for an unrelated issue with ringing in my ear a few weeks later. I went to see ENT surgeon number 1; he noted these enlarged cervical nodes, palpated them over and over and sent me for a full blood count, which I promptly obtained and at that time, was predominantly normal (predominantly). He reassured me if the blood test he ordered was ok, I should be fine too. Happens all the time. I told him they had been there for 6 weeks, I hadn’t been unwell or sick and in fact I was training for a marathon in Auckland that October. More of them came up, they never decreased in size. I knew something wasn't right, but felt reassured enough to let it be. He arranged no further follow up with me for this issue, or for the ringing in my ear.

In that situation, even I as a family medicine resident, I felt my opinion was inferior to that of a specialist perspective with respect to my adenopathy. I knew I should have further investigations, I knew my body so well, and was incredibly in tune to anything being even slightly off balance, but I trusted his knowledge. I felt reassured by his certainty and the fact that he felt no further follow up was indicated temporarily put my concerns on the back burner. Isn't it interesting that even in an interaction such as this, with a potential malignancy on the mind, we are able to just trust what is being said rather than push for further investigation? Maybe hearing the news we hope to hear, that assurance things are ok, can allow us to be settled after leaving a physicians office, despite that voice in our head saying "but theres something more going on here...". The tinnitus in my ear went away, but the lymph nodes in my neck did not.

Off I went to Moncton not long after this appointment and then New Zealand for medical electives, still with enlarged nodes in my neck. I remained hopeful that the faith I instilled in this ENT surgeon would essentially make the lymph nodes disappear and that they would be in keeping with a benign presentation, just like he said.

I returned home to Nova Scotia a couple of weeks after the new year began. I knew it was time to get my neck checked for a 2nd time. Things didn't feel right and I had to be my own advocate. I found a family doctor at the university (my GP of 25 years had retired) and at my first visit I brought up these nodes. She didn't pay much attention, didn't check for enlarged nodes elsewhere, didn't order any bloodwork, but we decided on an ultrasound scan. I had the scan less than a week later and concern was certainly raised at the time of the ultrasound by the sonographer.

I was called back to my new GP's office, shortly after the scan, who I can’t say a lot of positive remarks about at this point in time. Her secretary called me on a Thursday night and asked me to return “sometime early the next week.” I asked if there was something urgent that should be discussed on the phone, or at an earlier appointment. Apparently not. I got an appointment the following Tuesday afternoon, five days later. I waited anxiously alone in the waiting room because I didn't want anyone to know what was happening, or what I was going through, just incase things were fine. When she finally called me in, I was asked if I had seen the results of my scan, specifically, if I had looked them up. Actually the words were “I’m sure you have already looked your scan up.” Again, assumptions. I hadn't.

She was cold, printed off my scan results and handed them to me, without any explanation, placing the piece of paper on her desk. I had a moment to read and process what the reports said, alone as she faced her computer screened and not me. My position as a patient in front of her was taken advantage of. She treated me like a doctor and provided no explanation of this worrisome result which indicated I had an abnormally large, concerning node on the left side of my neck. She informed me I would be referred to another ENT surgeon and suggested I find his office while at work the next day to try and get myself an urgent appointment. She then asked if I wanted anything added to my bloodwork (“Have I ordered blood work yet?" she asked) and that was that. I had no idea what was really going on and processed the news alone, outside of her office in my car. I can't possibly put into words the disappointment I felt that day in my new family doctor. Lacking the pivotal, fundamental skills of a family physician, she failed to provide empathy, explanation, an appropriate gate keeping role, concern, or a plan for me to follow up with her. I have not seen or heard from her since that day, 16 days ago.

I saw a surgeon the very next day, thanks to another physician I brought my fear and concerns to. She promptly advocated on my behalf and was in my corner after witnessing and hearing of the poor care I had been receiving.

ENT surgeon number two was calm, warm and wanted to proceed immediately with a small aspirate of cells. He assured me it would happen within 1-2 days. After leaving our consult, he tried to arrange an aspirate for that day, which did not happen. I went for blood work, a chest XR and then went back to work awaiting results, seeing patients for the afternoon. The next two days I waited somewhat patiently but eventually I got frustrated. I was promised by ENT number 2's secretary she would call the very next day and she didn't. Finally, on day two I called her. I wasn't ok with being told I would be contacted, when I wouldn't. I was no longer ok to be left in the dark, advocating for myself. She wasn't sure when I would have my biopsy, but advised me to call radiology myself to try and expedite the process. This was getting ridiculous. I did call and not long after I had a biopsy scheduled for five days later.

That night, I ate chocolate that was blessed at a monastery with my friend Rachel. We were hoping for the best possible outcome at this stage. We sat around her kitchen table for hours; she was and remains a pillar of strength for me. I ended up staying at her house for a few nights; I couldn't bear the thought of going home alone and being left to my own thoughts.

My blood work was not reassuring. Immediately the physician who had so kindly helped me obtain an ENT appointment went into action mode with me; calling hematology, ordering more specific blood work, a CT scan and sent ENT surgeon number 2 a message asking him to skip the cell aspirate and proceed to open biopsy for definitive diagnosis. She was amazing and if it weren’t for her, I would still be in the cue awaiting an ENT appointment I am sure. Without hesitation, she had things rolling.

I’ve been in a tailspin, a hazy mind ever since. I went from being the doctor, making decisions and sitting with my patients over their last hours and breaths, to being on the other side absolutely lost and shocked. I go into stores now and when someone asks how I am, I can barely answer. I look around me and wonder “Is this real?” Never have I had a concern for my health. Never have I taken that for granted. But let me tell you, everything changes the minute someone tells you that you need investigations, or they mention the “C” word with your symptoms in the same sentence.

Five days later after my ENT number 2 appointment, it was time to head in for my neck biopsies. It started out smoothly, with two core biopsies taken from a node in my neck. I was just getting ready to leave and was called back into the room. The biopsies had been put into the wrong containers and had to be done over again. The first two weren't all that painful, the freezing into the neck certainly stung, as expected, but the second round took the cake. The radiologist performing the biopsies incorrectly thought my neck would still be frozen for the final two he required. My neck was not frozen. Immediately upon him entering into my neck with the biopsy gun I remember tears unconsciously streaming down my face. He looked at me shocked and feeling terrible, knowing I was no longer frozen from the local anaesthetic he earlier infiltrated. I told him to fire the gun, freezing or no freezing and after two attempts I was done. Again, I had no idea what to expect that day, as it was never explained to me that I would be unable to chew solid food or move my neck side to side for a couple of days.

After my neck biopsies, Rachel and I went to seek out the pathologist who had reviewed my flow cytology, a specialized blood test that I had been hoping was misinterpreted. I needed to know if there was possibly an error in my cytology results. He wasn't in his office, but a lovely lady called his personal cell phone and handed me the telephone. I told him who I was, why I was interested in speaking with him as a patient and physician and I remember him pausing, responding "Wait, are you the 34 year old?" I am, I replied. "This is not usual" he said and told me to send him an email for us to meet. I sent him an email and he called me back later that evening, though I wasn't really able to talk. He continued to call me nightly, for three days updating me on my biopsy slides, processing times and providing explanations for what was going on in my blood. He was personally seeking out my neck biopsies and ensuring they were stained with attention, processed as fast as possible. He really went above and beyond and finally I was getting some answers.

That night and into the next day, I had three servings of "yucky drink" (AKA gastrograffin) in preparation for my CT scans. Atleast I can pre-warn my own patients that this stuff is vomit worthy. Rachel wasn't wrong in appropriately naming this "lemon-metallic flavoured syrup substance" the yucky drink. It was now Wednesday, one week and one day after I received my initial ultrasound results. I still couldn't chew, but I didn't really care. I couldn't sleep either and that was really starting to bother me. I had nightmares every night and that particular night, I dreamt that a male physician placed his hand on my shoulder, looked me in the eye with his black rimmed glasses and said "Yes, you have cancer." That was it. I woke up from this nightmare, realizing this wasn't totally a dream. My premonition would come true.

It was Thursday when I got the call that I would see hematology the following day. By this time, I knew the direction that all of my investigations were headed. It wasn't going to be what I hoped, I knew that for sure. I was prepared to hear the news (as prepared as one gets) and on the morning of my hematology appointment, for the first time in nearly two weeks, I curled my hair, put make up on and was ready to face February 3. I haven't changed my mind though, I still think that February 3rd was an asshole to me this year; clearly I haven't gotten over it.

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