A statistically bad chemo

I think the less I say about my last chemotherapy experience the better. Even the minimal information I do intend on parting with will probably gross you out. Basically, there were too many bodily fluids flowing from too many orifices. There are certain biological functions that, as an adult, one assumes they will always have under control. Ah, welcome to hospital! Here is a bag for your possessions, and another for your dignity. You’ll never get the latter back. The majority of the three days was spent playing trial and error with food sources in a vague attempt to keep said sources in my stomach. The error rate was high. Eventually, I stuck to minute sips of water. Despite my vomiting, shame, and general sentiment of doom and destruction, it was difficult to feel sorry for myself. The guy through the wall from me would heave for an hour straight. I, at least, threw up my pathetic meals rather quickly.

We are not entirely certain what lead to such an extreme decline in my chemotherapy tolerance. There were two variables, which I know is terrible science but I cannot help that now. I am beginning to think that biology is more of an art than a science. I will use this to justify my multiple variables. Anyway, where was I? Variables, right. I had begun a rigor-fever cycle a couple of days prior to this round of chemo. The fevers were never massive, they were deemed low-grade (which I believe means less than 38°C) by the medical staff. This time the rigors were blamed on the lymphoma despite my full blood count resembling an infection. I may have questioned the numbers. Twice. I still suspect I had an infection. The rigors do not matter much now, they have resolved, but a week ago they wore me out dreadfully. I was like super tired before chemo even began. 

The second variable involves the anti-emetics, which were altered slightly. They withheld the steroids. Initially I was happy with this move. I do not care much for the side effects steroids have to offer me, namely the pressing need for two a.m. snacks. Unfortunately, here I need to swallow what little pride I have left and confess: chemo is easier with steroids on-board. I feel better throughout and I feel better afterwards. Perhaps this may be deemed performance enhancing, but seeing as I am not a Russian track athlete, I don’t think anybody is going to mind too much. The day after my discharge I spent twenty hours horizontal, fighting, not really fatigue, but some haze between the real word and unconsciousness. Aside from a vague nausea and a relatively vocal stomach, I was not in any real discomfort, my eyes just refused to remain open and I could barely move. Next time I will take my dexamethasone like a good little girl and, perhaps, have days of production rather than destitution.

I have written more than I intended about my last chemo. It is a period I care to forget about. The topic I had actually intended on writing about is statistics. This could be an opportunity for you to stop reading. Things may get a little dark from here on, and the word ‘statistics’ has been used so, naturally, I expect some of you have drifted off to sleep. Also, I may mention particular statistics that you may not wish to know about. I kind of wish I did not know. I have stopped asking. So if you want to tag out right now I really don’t blame you. In fact, I admire you for lasting this long. Chocolate fish all round.

In July, after I received my unfavourable news, I was forced to think a bit. People talk about glasses and their perceived volume; is the glass half empty or half full? Most would probably decree that I was a glass-half-empty type of girl. To be honest I never really put much thought into the matter until I was, well, forced to. Upon reflection, I realised I was the type of girl who obtained, through certified channels, the exact capacity of the said receptacle, analysed the volume of the liquid within the receptacle using a traditional measuring cylinder, confirmed the result using a weight based technique (verifying the equipment's calibration status in the process), and had therefore discovered that the liquid occupies 47.25% (+/- 0.25%) of the volume of the receptacle; so indeed the glass is more than half empty. What I am trying to say is I like to know all the facts. And then I will overanalyse those facts.

In early August I became a little obsessed with statistics. I listened to the doctors, I read the textbooks, the papers, the review summaries; I knew the feedback cycles, the treatment regimes, the drug interactions. Then, sometime during my August-September diagnosis period, I developed a thought pattern, probably incorrectly, that medicine as a practise was entirely statistics. The case studies, clinical trials, meta-data analysis, create these numbers and percentages that are then used to treat patients. This is why my diagnosis process was so thorough: “It is very rare, Mrs Stocker, for you to have relapsed or refractory lymphoma given your clear scan in April.” It is like 8% rare or something like that. Not really rare, more statistically unlikely. I had a 92% chance of achieving remission and I blew it. Somebody needs to make up that 8% and once you find yourself in that minority group you cannot wish yourself out of it. As soon as you do that you are effectively wishing it on someone else. I would never wish this on anyone. For the 92% who made it through I am happy for you, but also a tiny bit jealous.

Having been blown away by stupid minority statistics, it is difficult to take the rest seriously or optimistically. Apparently 50% of patients are successfully harvested. Given my rapid relapse, that figure drops below the half mark; somewhere between 25 and 50%. So I had a 92% chance of remission and now, with some extremely positive thinking, it is around 40%. I began shying away from success stories, as if those whose treatment worked chipped into my 50%. It is not that I didn’t want other patients to be successful, I just didn’t want to hear about it. This is, of course, absurd logic. Each individual’s case is mutually exclusive, statistically not even medically. Medically each case is like an ENZA orchardist comparing apples with apples. I started to get cranky. What does ‘successfully harvested’ even mean? Do age, previous medical history, or charming personality effect these statistics at all? Is there a time frame? Is it six months? Three years? Five years? I would be happy with five years, hell, I would be happy with three. What happens if I am unsuccessful? Actually, I know the answer to that one: more treatment, worse statistics.

Eventually I became overwhelmed by statistics. 50% of salvage chemotherapy patients present with neutropenic fevers. 1% will die from these fevers. Less than 1% of patients fail to have a PICC line inserted. 99.9% of female salvage chemotherapy patients over 25 years of age become infertile. 50% of patients discuss fertility preservation options. 50% of patients who discuss fertility options actually take up the options. 10% go on to use the stored material. It is ‘unfortunate’ but not ‘unheard of’ to have needed multiple biopsies pre (or mid) diagnosis. At least they did not attempt to quantify that one. I have a scan coming up that will alter my statistics. Not the scan itself, but its results. Over the last couple of months I have stopped reading the statistics. I cannot change them and, although there is no point in dwelling, I did tend to fixate on them a bit. Ok a lot. Now, in order to make an informed treatment decision, I am required to read the science and statistics once again.

In here, this cancer institution, this day ward, this haematology ward, we are all unfortunate statistics. Not one person I have met has obeyed the textbook. Bone marrow transplant patients have had failed stem cell transplants. They were happy with the time they got. In the community the people one meets are usually survivors. Here, they are sufferers and complications. And there is always someone more worse off than me.

Some days I get hung up on the statistics. They are totally beyond my control and I think that is what bothers me; there is nothing I can do to change which side of the statistics I fall on. I get frustrated, sad, and angry. Other days I find it all oddly liberating. That life plan that always niggled at the back of my mind, a career, a house, some kids, a few cats, a handful of chickens (they would get along with the cats just fine), that plan doesn’t exist anymore. It is not even possible. I mean, Piper would never tolerate a chicken. During the days of liberation it feels like there are no expectations of me, like the only thing I have to worry about is being on the good side of statistics, the statistics I can participate in, but cannot control. It is odd to have these contrasting days. I would say that there is a strong correlation between how I am feeling physically and how I am feeling emotionally. So is the glass half empty or half full to me? Well, unless we are talking about a beer jar, I really do not give a damn.         

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.