Trees, Sepsis, Hair loss

Friends! I have an update on the faux Christmas tree. Two months prior to Christmas the tree has been removed from the naughty corner, replaced by a non-descript pot-plant with glossy green leaves. The Orwellian in me wishes it to be an aspidistra, however, I really cannot be certain. I am unsure what the fake Christmas tree has done to redeem itself. Perhaps it is merely a ruse. Perhaps they will present the tree again in December in an attempt to fool us guests, pretend they have made a Yuletide effort when really they had forgotten it for ten or so months. However, I shall not be fooled by their guise, as I will still be here in December. I will endeavour to keep you updated on this faux tree’s fate. Until then we are left with this non-descript pot-plant, a pot-plant that is really too tall to be an aspidistra, destroying all irony I was intending.  Perhaps I am reading too much into this situation and the real reason the tree was removed is because they, whoever “they” are, read my blog. I mean, all the cool kids read it, right?

One Friday night recently, when the fake Christmas tree remained in a position familiar to me, I had a rather memorable dream. It did not involve the tree. The slumber on the particular Friday night in question was induced by a magic pill. I had experienced consecutive sleepless nights and in order to prevent a deformed second head from rising through my neck bling, roaring with a bitchiness only ever induced by lack of sleep, yes to prevent this highly probable event from occurring, a magic pill was consumed and thus the dream followed. I will warn you now; the dream is not that spectacular. There will be no civil rights movements, or anything of the like, resulting from its documentation. It was merely a vivid dream. A vivid dream I intend on telling you about. Eventually. Just a bit of background information before we begin: when I rigor I am usually running a temperature so although I feel extremely cold I am actually burning up. This means I am usually prevented by the powers-that-be from warming myself up. No hats nor blankets nor hot water bottles, indeed sometimes they place cold flannels and iced water on me instead despite my persistent protestations.

So it was a Friday night (I think), I was drugged (voluntarily), I was asleep (possibly), and I began to feel cold. In my dream I was cold, shivering in fact. Now Dream Liv is a pretty smart cookie. She realised that those surrounding her, which at this point in the dream were her husband and a bunch of nurses, would not take kindly to this shivering. She knew these individuals would try to admit her into hospital, a place that neither her, nor Reality Liv, wished to be. Dream Liv needed to conceal this shivering and hopefully warm herself up in the process. What better way to do that than to dive further under the covers? This would provide warmth and was not at all conspicuous. Dream Liv even congratulated herself, cackling away at her perceived ingenuity. The nurses with needles could not find her, the ambulance had crashed, her husband was talking to her, louder, louder, shaking her; oh crap Reality Mike had cottoned on to Dream Liv’s antics and was attempting to summon Reality Liv who, in a Zopiclone laced fever, simply ceased to exist. “This thing [thermometer] is beeping at me!” cries Limbo Liv “What is it doing?” Get the beeping away from me!” Reality Liv eventually emerged around 10am, frozen in a pool of her own sweat. This was the third time I had had a hospital dream. The previous two had landed me in hospital. My sub-conscience was more alert than I.

I had not experienced a rigor episode since I began chemo so this incident took us a little by surprise. My head felt over-inflated all day, as if all my blood had been forced into my brain and I now resembled Mr Mackie. Further rigors, persistently raised temperatures (the thermometer and I had reconciled), and numerous nonsensical statements lead to a Saturday night ED visit. I knew it was a Saturday, but had forgotten that Friday was the day prior. I kept informing the clinicians of my blood results “from Friday”. I felt as though a week had passed when it had merely been 36 hours. Upon my VIP entry to ED my heart rate was 165, temperature 39°C, and all my lymph nodes were inflamed. My spleen hurt. My spleen and I have had a decent relationship these past few months and I was upset that this relationship was once again strained.

Ultimately, I was petrified that the fevers, rigors, sweats, nodes, and delirium were due to my disease. I had felt far too well post chemo, it was quite obvious to Fever Liv that the chemo had not worked at all. My lymphatic tumours were fighting back, punishing me for my continuing insubordination. But apparently no, these fevers differed from my disease fevers, I actually had neutropenic sepsis. I am unsure how many people are relieved to hear such news but I can tell you that I certainly was. Prompt IV antibiotics and fluids reduced my confusion but did not induce any sleep; I spent the night in my private ED room listening to the fallout from a high school ball. Sunday morning, mid-rigor with my face burning, nausea overcame me. It was not pretty. I vomited through my hands, on myself, on my bedding; vomit smeared across my shivering face I was desperate for a receptacle to make the situation a little more dignified. Eventually I spied my water jug and proceeded to fill it with my stomach contents, my teeth chattering throughout. To be quite honest I felt dreadful. Utterly dreadful. Upon discharge, some five nights later, I read that I was deemed ‘well’ in ED. If I was well, I do not ever wish to be deemed unwell. My septic episode was mild in comparison to the many others on the ward combating the same thing.

Scaring all the adults with my neck bling

I do not have that much hair anymore. The day I was discharged I spent $40 on a bad haircut. Two days later my hair started falling out. In clumps. One morning I woke to find a substantial volume beside me on my pillow. In the twisted irony that currently seems to be dominating my life, it appears I am allergic to my own hair. Not anaphylactic allergic, more rub-your-eyes-constantly allergic. Irritated is probably a more apt word. The next morning left me looking like a soccer ball that had been left outside the entire winter; dirty and slightly waterlogged, the leather sagging to leave distorted white and black patches. I had lost a third of my hair in one day; a number one was necessary. The day Mike shaved my head I was required to shave my legs, but not for the same reason. And I still have eyebrows as bushy as Bert’s. Eyebrows appear to be stubborn beasts. How do I look now? Well, now I look like a cancer patient who has recently lost all their hair, but none of their eyebrows. I look silly really, very silly indeed. In fact, I have taken a break from practising head scarf knots in order to write this. After two hours of practice, frustration, and tantrums, I think I will just opt for a skullcap. Finesse is not really in my repertoire.

So my hair fell completely over three days. With ABVD it took six months and even then I was never entirely bald. I caught an unknown infection that hospitalised me after my first cycle of ICE, yet my neutrophils were only low for a few days and I had been vigilant with diet and hygiene. With ABVD I was a little more adventurous, had lower counts for longer, yet I was never unwell. On the plus side, my mouth is ulcer free and my throat is still co-operating. Other than the hair loss and the sepsis, I have had few side effects. Except, of course, fatigue. I have instigated pre-bedtime naps, on top of my post-breakfast naps and my siestas. Yes, the fatigue is strong in this one.       

Inpatient notes

It is rather difficult to begin these posts. For this particular entry I do, at least, have a rough plan in regards to content. Beginnings, however, are a little tougher. Rather than pouring over the notes I made as an inpatient, my eyes instead dart around the room in search of creative inspiration before finally focusing on inconsequential features. An item that has struck up particular interest with me today is a medium-sized faux Christmas tree leaning at a slight angle against the corner of the lounge area. Given it is now October I can only assume the tree has been in such a position for at least ten months. It may well have been sitting there for years. Perhaps it is doomed to lean like a naughty child for the remainder of its days, the transient tenant population here would never notice. Yes this unseasonable tree is an insignificant, yet still a distraction, and thus I am no closer to beginning this post.

“Pouring” over inpatient notes is somewhat hyperbolic. Such a word implies I wrote substantially over those five days, that I have screeds of brilliant jots just waiting, begging, to be stitched together, inevitably forming a mythically beautiful piece of prose. This is not quite reality. Indeed one day I merely wrote “two hours sleep total”, I mean, that is hardly Man Booker material. It is not even grammatically pleasing. But I guess we should be grateful that I did at least make some notes elsewise there is a high chance that I would still be waffling on about fake Christmas trees. I think the general theme one can take from these now infamous inpatient notes is that my first round of chemo went rather well. Almost eerily well. Like, I keep expecting something to jump up behind me, or to receive an ominous phone call, or, I don’t know, some sort of clinical setback involving zombies, vampires and rabid dogs. Unimaginative, I know, but that is where my mind first raced to.

I may have mentioned in my previous post that this ICE chemo regime is to be administered as an inpatient rather than as an outpatient. Hence the formation of inpatient scribbles. Despite my nocturnal rigor-fever-sweat-rigor-fever-sweat-sweat-sweat routine, I felt aptly prepared after my first night on the ward for the twenty-four hour Ifosfamide infusion I perceived I was receiving that day. It turns out that the Ifosfamide infusion happens the second day not the first. The first day is merely a thirty minute Etoposide infusion, which actually is a nice way to ease into things, but I must confess that administering drugs out of acronym order did boggle my over-analytical brain just a bit. If we may, just for the sake of completeness, confirm the actual acronym, then technically it ought to be EECIE. Not as memorable, granted, and phonetics could pose a problem especially as I have some accent confusion when it comes to e’s and i’s, but I feel it gives one a more accurate indication of drug order. But do not fear! The remains of my first day were not all in vain, I was rewarded for my efforts with another blood transfusion. I will blame my marginal haemoglobin for my more-than-marginal breathlessness in Wharariki. This transfusion was somewhat comical as, owing to difficulties regarding vein size and PICC lines, I currently have a central line protruding from my neck. I rather felt I resembled a paradoxical vampire. An uber efficient paradoxical vampire.

The Master would be so proud

It is difficult to know if the following sleepless night was due to the transfusion or due to the dexamethasone, which is given as an anti-emetic. Possibly it was due to both. Dex is hardly Prednisone but it does have the ability to keep one awake at night. What I can assure is that this was not merely a tossing and turning night. This was a ‘let’s go for a run’ night. My legs did not wish to maintain a horizontal position despite protestations from my heavy brain. Background nausea had kicked in you see, sleep would have been well appreciated. Instead I relied on mouthfuls of ginger beer, regular blood pressure checks, and Albert Camus to pass the night. That day I was connected via my neck bling to the ever-eager-to-beep pump machine for the remains of my chemotherapy, administered ECIE over thirty hours. I managed to sleep all day and all night. In hindsight the sleepless night may well have worked in my favour. It is best to be sleepy when immobile.

I woke from my slumber marathon much resembling a puffer fish. My hair and eyebrows askew; my hands, feet, knees, and cheeks bloated and swollen; well it all compounded to form this aggravated fish look. The Ifosfamide is given with litres of fluid. It is rather toxic to the bladder so the clinical team wish to keep urine output to a maximum, in fact they actually measure the urine. All of it. When they weighed me that puffer fish morning, as they did each morning, I had gained four kilograms. Well I can tell you, cancer or not, no young woman (I’m young in the haem ward) wishes to be told such things. Overnight? Four kilograms? If I had had any facial definition remaining I am sure I would have frowned. I informed my nurse that I had attempted to self-medicate with a nice New Zealand long black. Coffee, however, is a weak diuretic and the one she had to offer me was ‘very, very strong’. What does ‘very, very strong’ mean? Well it means I now know my bladder capacity is about 900mls, and I had to completely empty it three times in the first hour. That roughly equated to three kilograms, visible kilograms too; I had my cheekbones back within the hour. 

And that, friends, was the height of the drama. A mere puffy morning. I did not even throw up. I slept a lot. I continue to sleep a lot. I am not quite at narcoleptic levels but my body is certainly making up for the many nights lost due to rigors and fevers and sweats. In the first of what I can only assume will be many comparisons to ABVD, ICE went pretty bloody well. I recall that complacent day in January, a day that feels a lifetime ago, with horror, and horror is what I expected to experience again. Perhaps in preparing for horror the horror itself dissipates. Perhaps Kurtz just needed more preparation. These past two months I have watched fellow patients begin their treatment and never once, funnily enough, was I jealous of them. I did not wish to start treatment but now that it has actually begun I am glad. So for now I leave you as an outpatient feeling ‘not too bad’, although I do suspect the decline and subsequent fall will be rather drastic.               

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.