I have some news

Puponga, Golden Bay. The farthest north, the farthest west I can possibly get within the Tasman region of the South Island. From a bed, I lay looking out into the clear dusky sky, no cloud, no smog. Only the erratic unsettled movements through the native treetops contradict my perspective of a still and tranquil evening. The day has been good, great even, and although I feel tired now, it is more due to physical activity than any particular disease process. I have, of course, used the term ‘activity’ loosely as it was not the most active activity. Overweight old men stealing sideways glances at my audible breathlessness whilst resting (er, I mean, admiring the view) atop a small summit “She doesn’t look unfit” they’re thinking. I managed it though, the one kilometre walk over small summits, the clambering, sinking, falling, over, in, and around the giant sand dunes. At one point I began to read far too much into my own wildlife metaphor as I lay amongst the dunes watching the seal pups play in the rising tide, in the surging waves, in the small river feeding into the wild sea. There was, also, excitement when I realised my hair is now long enough to be wind swept, albeit requiring a Wharariki wind. As the afternoon went on and the gusts turned to gales, I managed the one kilometre walk back over small summits, again with sideways glances from overweight old men and, a new addition, concerned stares from international tourists, tourists who were promised an easy walk to see some beautiful dunes so why is this local girl with her wind swept hair audibly breathing so very hard? Hence now my physical exhaustion.

Did Gertrude Bell find sand walking quite this hard?

One pillar of wisdom.....

A little over a week ago I had a bronchoscopy. A camera is fed down through the airways, usually the nasal passage, into the depths of one's lungs. Whilst down there the team squirt in a bit of liquid, let it rattle around for a while, then aspirate it back up again in the hope that the fluid will bring a few respiratory cells along for the ride. These cells would then, again hopefully, culture some bugs and give me a diagnosis that isn’t lymphoma, a diagnosis more like Tb whose symptoms happen to mimic Hodgkin’s Lymphoma. I have spent the last two months wishing, actually hoping, I had Tb. The procedural idea is to administer IV anaesthetic, enabling the patient to experience a mild amnesia and ensuring they remain compliant with the clinician’s instructions throughout the thirty-minute bronchoscopy. I am unsure of what happened in my situation, whether the drugs took a little too long to kick in or if not quite enough was administered. I do, unfortunately, recall the procedure rather vividly. Oh, and no I was not compliant, although, I assure you, I had every intention of being so.

The consultant could not get the hook of the camera into my nasal passage, a ‘petite nose’ apparently, (I think she means ski-jump but I’ll accept the euphemism) and so the oral route was required. A rather large black tube was eased down my throat. I couldn’t control my coughing, which quite quickly converted to heaving. Occasionally I calmed myself with periods of nasal breathing; these periods never lasted more than five breathes and I must admit I was breathing rather rapidly. My coughing, heaving, nasal breathing routine proceeded for a half hour or so, looking up at the stark lights and black cylinders (I was calmer with my eyes open), listening to the doctors bark instructions “more fluid, more fluid, more fluid” – “Please no more fluid” I am thinking however it comes out a more muffled “mew err err cough cough cough aherr herr herr aherr herr”. Eventually, they aspirate the fluid from my lungs whilst verbally considering whether to biopsy one of my beautiful lung lesions. They can do that, you see, while they are down there. By now I have realised my ability to communicate using vocal tones is severely diminished and therefore I attempt a more telepathic approach; “No, no, no, no, please no, I will wait another month for diagnosis, two even, if it means ending this torture now”. The consultant is still audibly considering her decision with ‘umms’ and ‘ahhs’ but picks up my wicked brainwaves and opts for “No”. I am unsure what a sigh of relief sounds like with tubes in one's lungs but I feel that this is what I delivered. As punishment for my non-compliance, I was to cough up blood and the occasional clot for the next twenty-four hours. “Traumatic” they termed it, which, even for me, is a bit over-dramatic.

How are you going? Frustrated at my small talk? I have covered the weather, what I did last week; I wonder what else I can waffle on about before I actually have to give some substance to this post? A hometown friend of mine drew a slight smile from me when I saw her last; “Right, what is going on?” she asks, minimal pleasantries, direct and to the point. Perhaps that is what I must do here, plunge right on into it rather than attempting to give any flow to my writing. Two days after my experience with a bronchoscopy the histological results from my axillary nodes confirmed Hodgkin’s lymphoma. In hindsight, there was no need to go into my lungs. So now I am officially diagnosed with refractory Hodgkin’s lymphoma. In a lovely little laboratory paradox, once the lymph node biopsy revealed lymphoma the bone marrow trephine could also confirm it. The bone marrow morphology was slightly abnormal, not conclusive of Hodgkin’s, further investigation would be required if I did not have Hodgkin’s, but made perfect sense once Hodgkin’s was confirmed. Gotta love those scenarios. On the plus side, my haematology consultant has promised me a trip to the lab to examine the morphology myself and to have a sneaky peak at their brand new Sysmex analysers. I may, just may, take the opportunity to introduce myself to various laboratory staff, have a sly look at their laboratory procedures, who knows, if I continue to talk the talk I may be able to line up a job at the end of all this. Oh, the prospects! Possibly not with my recent ‘let’s get the haemoglobin level from a citrate sample’ suggestion, I am not sure that went down too well with the purists out there.

OK let us summarise that jumble: I now officially have refractory Hodgkin’s lymphoma, it is in my bone marrow, the haem team have allowed me a brief convalescence trip to Nelson/Golden Bay (they don’t actually know about the Golden Bay part, that is our little secret), I get to visit the haematology lab in Wellington to (perhaps) make some friends.

Where do I go from here? Treatment, obviously, needs to be discussed. What else? Statistics? Well, I think most of us don’t really find p-values overly exciting so perhaps statistics will be left for another post. I am sure I will, at a later point, get into the nitty-gritty of the treatment regime so for now, I shall give you the minimum required to be informative. The next step in the treatment chain is salvage chemotherapy followed by an autologous stem cell transplant. Although this sounds like something involving controversial ethics and an impromptu trip to India, it is nothing quite so exciting. The first treatment goal is to get rid of the lymphoma, which is where the chemotherapy comes in. They are going to give me regime called ICE. No that is not a Breaking Bad reference it is indeed my chemo regime: Ifosamide, Carboplatin, and Etoposide. I am sure in the coming months there will be various moans and groans about each of these drugs therefore, again, I shan’t delve into too much detail at present.

Three ICE cycles are planned with each cycle spanning three weeks. As ICE is administered over a seventy-two hour period, I shall be an inpatient for three days each cycle. The number of the day, by the way, is three. At some stage, after my final dose of ICE my own stem cells will be harvested from my blood and preserved before I get zapped for about a week with high dose chemotherapy. The haem team have never named this ‘high dose chemotherapy’ making it all the more ominous. For the record anybody who thinks they are escaping a scientific version of events is rather delusional. All that is to come, my friends, it is just not necessary for this particular post. After the ‘high dose chemotherapy’ (cue spooky music) they reinfuse my stem cells, which have been protected from the ‘high dose chemotherapy’ and I have three weeks or so whilst the transplant settles in where I am pretty much bedridden. Throughout both the ICE chemo and the high dose I am going to be reliant on blood transfusions, platelet transfusions, sodium infusions, magnesium infusions – pretty much everything. Anyone out there contemplating donating blood would get enthusiastic encouragement from me.

As with anything medical related, plans are likely to change. Scan results, the way my body reacts, even funding, all have the potential to alter plans. This is the plan for now. My 'holiday' in the Tasman region is nearly at an end and it will be unlikely that I can escape again this year. I will try, oh yes I will try, but at this stage, I am Wellington-based for the foreseeable future. The foreseeable future being, of course, three months.