If all goes according to plan

So. It has been a while since we last spoke. As you may have noticed I have retracted into my shell, occasionally sticking my irritable neck out for food and water, but generally content to sit in my own darkness, insulated from the outer world. I think it is my bald head. It kind of makes me look like a turtle. I am pretty distracted and this entry has been the victim of severe procrastination so I am just going to launch into it, skip the descriptions Wellington’s wind, of my fragile emotional state, and just get the words out there. I don’t particularly enjoy writing in this manner but let us see how it goes.

Some weeks ago, after my second round of ICE, I had a CT scan to check my lymphoma status. The results were good; I had achieved a partial response to ICE chemotherapy, only the nodules in my lung remained. BCSH guidelines (yes, I have read them) state that a partial response is required to proceed to the next treatment stage. Mike and I shared another public peck at the good news and preparations for the stem cell transplant began. It was scheduled for December 23^rd, a perfect Christmas present. I had only one round of ICE remaining.

I shall deviate here slightly to nerdily describe the stem cell transplant progress. It is better defined as a ‘blood stem cell transplant’, you know, to remove any controversy. The idea is the bone marrow is stimulated via high dose G-CSF injections administered over a ten day period. This means two injections in the gut each morning. By about day seven the bone marrow is producing so many cells that they do not have time to differentiate within the marrow, so they just remain as stem cells circulating in the blood. These ‘mobilised’ cells are then ‘harvested’ by apheresis: blood leaves the body from one tube, undergoes centrifugation, the stem cells are collected, and the blood is returned back to the body through another tube; a continuous process with only a few hundred milliliters of blood leaving the body at one time. It is similar to dialysis. The collected (haematopoietic) stem cells are then frozen. This is a preservation process as the high-dose chemotherapy (BEAM in my case) is so toxic that it kills the bone marrow and damages stem cells. It also melts away any residual tumours. After the BEAM, the frozen cells are reinfused into my body, take about seven to ten days to work their way into the bone marrow and Hey Presto! I am cured. If all goes according to plan. The stem cell mobilisation was to start the day after my final ICE infusion.

I check into the haem ward cranky, as usual, for my final round of ICE. As I have previously mentioned it is a three night incarceration that I am never eager to attend. And the final round was crap. I was irritable day one, threw up for three consecutive hours day two, refused all hospital culinary delicacies from there out, and spent day three trying to focus on objects situated directly in front of me, failing, and falling asleep. At two a.m. in the morning of my final scheduled night as an inpatient, my temperature spiked above the dreaded 38°C. I am usually pretty clued up when it comes to my fevers, I know when they are coming on, I know how long it will take for my temperature to reach 38°C, and I know when to take paracetamol to calm the bastards down. This particular fever, however, took me by surprise. I knew I would not be discharged that day and I was pretty bloody angry about it. The doctors termed me ‘unwell’, infection was presumed, and broad spectrum IV antibiotics began with a disclaimer: we may not be able to begin your stem cell mobilisation tomorrow if you have an infection.

Well, isn’t that a fun thought to try and get your head around, when you are stuck in a room with a stranger, a stranger who has many different snores (so many I could not count each noise), trying to comprehend that your schedule, the schedule that had taken three months to prepare, could be thrown out the window because of one stupid temperature spike. I had prepared for many scenarios where the transplant would not go ahead, but I had not prepared for failure before the process had even begun. I was angry, down to the depths of my stomach, and there was nothing at all I could do about it. Relief came the following day, a Monday, when the regular haem team were on and assured me that the stem cell mobilisation would go ahead. It was the most reassuring gut injection I have ever received.

Despite the continuous IV antibiotics, my body feverishly pottered along. A couple of tender lymph nodes bulged from my neck, a couple more sprung up in my groin. The fevers became the predictable events I remembered; a rigor one could set a watch to. These were starting to resemble disease fevers rather than infection. This thought comforted me; if I don’t have an infection then they will let me out of hospital and I can at least feel shitty in an environment of my own making. I decided these words of wisdom ought to be conveyed to the haem team.  Unfortunately, they did not share my enthusiasm. I should not be displaying symptoms of disease. If I was, then the transplant would not happen and plans B and C would not only need to be devised, but also actuated.

And it was about then that I completely lost my shit. I had, externally anyway, remained calm when around the clinicians, hid my fears, my worries, and had just concentrated on the information they divulged. I even offered them a sly joke or two. But, at that moment, I lost it. My tears became as uncontrollable as my fevers. It turns out that further relapse was also omitted from my list of possible failures. There was still the slight, very slight, possibility that an infection was causing my symptoms and, as I was losing my shit in more ways than one, further tests were performed. I vaguely recall cheering "I have c.diff, I have c.diff" from my hospital bed and fist-bumping my nurse as he wheeled me into isolation. I am not sure how much of that memory is actually fever. Probably most of it. The general sentiment of the moment remains: I was happy and the clinical team were ‘cautiously optimistic’. The persisting IV antibiotics had wiped out my microflora, my good little bacteria, leaving c.diff to run amok. But it did not take long before I realised that the infection was a false hope. A helpful little night nurse even told me that one doesn’t get fevers with a c.diff infection. I do not know if she understood the implications of her statement.

I remained in isolation to protect my fellow patients, received the daily G-CSF jabs and plunged back into lachrymosity, the tears only amplified by my frequent fevers and general pessimism. Harvest day was looming. The haem team continued to bathe my cells in IV antibiotics. If I did indeed have some superbug with freakishly good hide-and-go-seek skills, they did not want it interfering. Interestingly, if my disease had relapsed it would probably not affect the harvest. Hodgkin’s cells rarely make it into the actual blood, so my stem cells should be mutation free. I know I have used the word ‘rarely’ there. I will emotionally deal with that possibility at a later date. A far later date. Anyway, the only ominous factor, aside from those aforementioned, was the absence of bone pain. I had been on double dose G-CSF for eight days without the slightest orthopaedic discomfort. There is a minimum cell count (CD34) required before the harvest will proceed. That magic number is 20. (They never told me the units, and I confess I never asked.) My count, on the day scheduled to be harvest day, was 2.5. The harvest is planned over a week, I still had four days remaining to reach 20, so really it was no big deal, but having been in hospital for eleven days, and with all the setbacks, and the frequent toilet breaks, I did not have the mental capacity to deal with a number as low as 2.5. So I do you know what I did? I am sure you do. Yup, I cried. I ignored all of Oasis’ advice, and cried my heart out.

The following day, however, I was roused by unrelenting skeletal agony. And I smiled, a sick masochistic smile, as I informed the clinical nurse of the substantial bone pain. She shared my excitement and rushed to tell the team. I imagine she burst into the office, hands in the air singing “She’s got bone pain!”, the remaining nurses and doctors of all ranks tossing their papers in an act of jubilant celebration.  Hmmm, perhaps that was just another fever. When she returned I was back to tears. I was no longer enjoying the pain. My count that day was 10, but they decided to hook me up to the harvester anyway with the hope of collecting the required volume of cells over two days rather than just one. They did not want to risk losing any of my circulating stem cells. The panic was unnecessary. The next day my stem cell count jumped up to a whopping 45 and I was hooked up for a further six hours. I will tell you about it sometime. But not now. This has gone on far too long already. The stem cell harvest is done, they have double the cells required, frozen in a protective pool of DMSO, safe for the next five years.

Harvest time

So that just leaves the fevers. In the final days of this horrendous episode I had a CT scan. The results were damning. The lung nodules had grown, further nodules had popped up in my spleen; pretty much all of my lymph nodes were enlarged. A biopsy wasn’t even required. In the three weeks since my last scan I had once again managed to relapse, relapse with a vengeance. This means, of course, that of my three doses of ICE, one worked, one was dubious, and the final was utterly useless. All it did was increase my reliance on donated red blood cells and platelets. In July I just wanted to make it to Christmas without a relapse, instead, I have relapsed twice. Yes, I am a bit bitter.

My discharge came suddenly. I could not be discharged to the cancer accommodation we had been staying at for the last four months as I was still symptomatic for c.diff and my fellow immunocompromised inmates could contract it from me. Mike called his brother and we made a rapid transfer to his place, and, ah, we kind of haven’t left. I am not going back to the cancer accommodation. It is existence, it is not living.

As the clinicians discussed plans B, C, D, F and probably Z, I was left to battle the fevers myself. I had a column of cuts running down my thumb from the paracetamol packaging. The fevers became more and more frequent and debilitating with each passing day. I was a broken mess, and all the King’s horses and all the King’s men were struggling, really struggling. They have since put me on Prednisone, hence the hyperactive nature of this post, which usually works for ten days. I’ve been on it sixteen now and it is starting to wear off, a few symptoms are sneaking through, but it has given me a fortnight of faux energy and actually feeling alive. Obviously, the transplant did not go ahead, but plan BCDFZ has been written, in pencil, and further treatment is imminent. We are just not sure quite when. There have been, and still are, a few complicating factors, but I will go over those in a later post. I don’t have the energy to discuss them right now. We will be in Wellington for a few more months yet. After a year of treatment, I find myself back at the start.

  

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.               

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. 

Red, hot, and sweaty

I had initially started this post from a hospital bed. Some fairly illegible scribbles were made to the terrible tunes pumping from my first roommate’s radio. Honestly, she turned the radio on at 7am, the volume slowly increasing as the day progressed. At one point I was scribbling to ‘A Whole New World’, which I at least found comical, but otherwise the station played just far too much Whitney. The following day I was treated to Mike Hosking first thing in the morning. Torture, I tell you, torture! Rather than biting my already raw tongue I opted for earplugs, which raised eyebrows and questions from passing nurses. Apparently I was the odd one.

    

There has been substantial action since we last conversed, however, I shall tell you from the outset that I am still awaiting lymphoma confirmation. It is difficult to know how to write this post. Flicking through my inpatient scribbles, the legible ones that is, I am struck down by boredom. An essay on all that I have done this September is not at all interesting and so I think I will begin with the most recent experience with hope that any gaps will be filled in as they rise. Let us see how that goes.

Ah, I am already going to digress! The plan did not go well at all. Time for a new plan. As I have mentioned, I have been feeling rather poorly since mid-August. Mainly rigors, fevers and sweats, although there was a period of nausea as well. The tendency is for these symptoms to persist a few days until I confess them to the haem team and am placed on antibiotics through the haem day unit. Initially it was Augmentin for the gum infection. At the next sweaty presentation they opted for regular blood cultures but held off on the antibiotics. That was until a set grew Micrococcus luteus from both lumens of my PICC line. We know it was Micrococcus luteus now, but it takes a while to determine the species of these little beasts and thus I needed a course of vancomycin. Here are a few fun facts about vancomycin: it has poor oral uptake and therefore is given intravenously, it has a higher toxicity than other antibiotics I have taken and therefore is administrated over a two hour period, and it has a short half-life so doses are required every twelve hours. I was obliged to report to the hospital twice a day for two hour infusions, and of course no infusion ever took less than three hours. This routine continued for ten days and although the haem team were fairly certain the growth was merely a skin contaminant, my bloody symptoms subsided (for a mere four days) therefore they had to proceed as if I had line sepsis. I subsequently lost my PICC line and am requiring cannulae and needles again.

Yup, all that is still boring. I think it is in part an attempt to justify my radio silence. Over the past fortnight, possibly longer, I have spent a minimum eight hours a day in Wellington hospital and I am not even working there. Last Thursday (maybe, time frames are becoming a little fuzzy), on top of the vancomycin, I had another surgical biopsy. The surgeons opted for the right axillary nodes (under my right arm) as they had shown themselves as ‘hot’ on my NZ PET scan. I cannot even remember when the PET scan was. I remember that I was pretty unwell for it and they let me lay my arms at my sides throughout, which I appreciated. I think I fell asleep during it. Anyway, the scan is still showing hot nodes and gave the surgeons further options for excision, including the right axillary. My response to the general anaesthetic during this last surgery was far from admirable. I stated my pain level as four out of ten to the recovery nurse, then began physically squirming, perspiring and potentially groaning. “It is not really a four is it Olivia?” “er um no” cue further opiates. The old lady opposite had undergone cranial surgery yet was displaying few pain symptoms. My attempt at staunchness was a pathetic failure. Do not fear, it does get worse. The surgeons decided to keep me overnight and thus I was introduced to my nurse, a girl a few years my junior who had attended the same schools as I from primary (possibly even kindergarten) to high school; one of those individuals you have known your entire life yet you do not actually know in the slightest. She may have gained a little insight into my psyche as I hurled up bile, shivered uncontrollably, and then proceeded to flash the entire ward due to a sexy hospital gown malfunction. No, the general anaesthetic was not as fun the second time around.

At this point I had had another four day ‘rigor free’ period. I had a brief shiver attempt at the haem day ward the day following my surgery, a shiver that resulted in the loss of my PICC line. The remaining three days of vancomycin was delivered via a cannula, as was an impromptu blood transfusion (not phenotyped, by the way, but I guess this is less of an issue now). As it turns out vancomycin is a pesky drug that likes to irritate veins. Presently I cannot straighten my right arm, and although it is not at dacarbazine level, my arm is bloody sore.

Sorry, I was discussing rigors. Friday, I had a minor chill, Saturday a decent rigor, fever, sweat combo, and by Saturday night I was back to a six hour rigor routine. I had feverish dreams where I attempted to get to A&E but for various reasons could never arrive there. Sunday I did not rigor but I did feel warm all day and when I finally conceded to a temperature check Sunday evening, the thermometer revealed it was in fact 40°C. And so we packed an overnight bag and walked across the carpark to the emergency department. I always feel incredibly nervous when attending A&E. I feel as though I am never sick enough to warrant a visit. A component of my feverish A&E dreams was a fine from the ambulance drivers because I did not actually need to attend A&E and therefore I was responsible for the car crash that had occurred (in an underground car park; it made perfect sense at the time, don't question my dream logic). I had been in a daze for most of the day, I definitely felt unwell, but it turns out along with my 40°C fever I had a heart rate of 170. The A&E screening nurse tested the heart rate monitor on himself as he thought it was broken. Although standing was extremely difficult and concentrating on my personal details was nigh impossible, I did not feel as though my heart was beating quite that fast. I was placed in the acute unit in A&E, which may have been overkill. On the floor there were squares indicating the places each clinician should be standing, I guess for extreme emergency cases. In the room beside mine, which was separated by a curtain and a three quarter wall, The Wiggles played loudly on repeat to pacify an ill youngster. I must say that Hot Potato did little to ease my heart rate.

This little episode of mine lead to my admission. IV fluids and antibiotics were administered using a brand spanking new cannula in my left arm, my right being bloody painful and all. The Scottish nurse got the cannula in on her first attempt. I thanked her profusely for her efforts. During my stay I displayed my rigor, fever, sweat combo for all the clinicians to see. I began sleeping, or at least laying, on a towel at night. A red rash had developed on my right forearm. Gradually it spread and now I have the fortune of rocking a full body rash, which is oh-so-attractive and does not at all scare the general public. It turns out I have a drug allergy, but good luck trying to figure which drug it is; any that I have had in the past four weeks is the answer. I guess we’ll find out the next time the culprit is administered, in the meantime I will continue to itch and scratch until it subsides. 

Eventually they released me from the ward and from my second roommate - a roommate that did not require a radio to be utterly annoying. I am thinking how to best briefly summarise her irksome qualities. They certainly cannot go unmentioned, so here goes: shrill unrelenting voice (my earplugs did little to block her pitch), lengthy explanations, exasperated doctors, physically waking me at seven in the morning and a new found love for her religion. This is only a small selection of her many endearing attributes. Therefore, when I was offered the opportunity to return to the cancer accommodation I responded with a vigour that may have been mistaken for good health. It would not have ended well if I was to endure another night with my new friend. As was noted on my discharge summary this little episode, and those prior, are most likely due to my underlying yet unconfirmed disease.

I am aware that this entry has gone on for a while now, and possibly there are few that remain reading, but there is one final aspect to my latest inpatient installment that I feel compelled to comment on. I must confess that I am always surprised when clinicians are polite to me as a patient because my employment encounters had left me with a rather different, some may say less favourable, view. I like all the haem registrars that have treated me, both in Wellington and Brighton. Fortunately I have never worked at either hospital. My career (career being a loose term) is starting to cross over quite seriously with my treatment. Firstly, I am having a few issues surrendering my blood to unknowns in the lab. In the UK the majority of my monitoring bloods were tested in the laboratory I worked in. Even in the Brighton lab I had contacts. Now they are tested in a lab where I know no one, nor their procedures. Perhaps these are control issues that ought to be addressed in a forum that is not so public; but then that is no fun. 

Before my last blood transfusion I sent the first unit of blood back as it was not irradiated. My first day on the ward, it took the doctors seven attempts to get a vein that offered any blood. The vein happened to be in the same arm as my IV fluids and thus the sample was diluted. The lab rang the ward in a panic (I am using dramatic licence here) with a surprise low Hb of 62. I told the nurse “No, it isn’t that low. The sample was diluted and the lab should really have picked up on that”. Liv was grumpy at the prospect of more needles and therefore was disappointed in the lab for failing to detect the diluted sample. She had been testing their ability, a competency assessment if you will. Three more needle attempts later and we had a decent vein with good blood flow, enough to fill a FBC, two coags (overkill right?), a group and save and a chem sample. But alas! The label from the FBC happened to stick to the label of another tube and therefore was deemed unlabelled. I had been pricked ten times already and was facing further needles. The registrar was devastated and, perhaps, the lab rat received the brunt of her frustration. All I know is that she actively conveyed to them how difficult I was to bleed. I suggested that the lab use the spare coag sample to obtain the Hb, which was the only result they actually needed. It is a simple calculation, merely multiply the value by 10/9 and you will have a fairly accurate figure. Fairly accurate was all that was required, merely a confirmation that my Hb was above 80. 

I nearly volunteered wandering up to the lab and doing it myself, hospital gown and all. The indignant scientist refused my citrate suggestion and even went to the effort of taking my doctor’s registration number, presumably to lay a complaint. In the end the repeat sample had to come from my foot. At this point even I was angry at the lab. I wonder which was the worse outcome, an off the record haemoglobin, or cellulitis of the foot due to an infected puncture wound? I think sometimes we scientists may take our job a bit too seriously. I imagine a few wry smiles have appeared on the lips of former colleagues at my last statement. “I hate catchy choruses and I’m hypocrite; hungry, hungry hypocrite” I hmmm, tunelessly.                            

Further non-updates

Firstly, I must issue a disclaimer; I do not feel like writing, I do not particularly want to write, I am therefore struggling to write and cannot promise any cohesiveness in what follows. Currently I am a bitter, angry individual whose only real desire is to get excessively drunk in the sun and mull over the world’s problems with the miniature New Zealand seagulls. Maybe I would even touch on my own problems. There are many barriers preventing me from accomplishing my desire; the anti-fun laws of New Zealand prevent public drinking, Mike would also disallow such activities, and, honestly, drinking two beers makes me feel utterly terrible. I no longer have that pleasure.

On Thursday I attempted this post for about the third time. Unfortunately, I spent all my energy suppressing an overwhelming urge to pick up the netbook I was using and, with one fluid motion, hurl it over the glass partition I sat behind, smugly watching the sluggish little beast fall four floors and smash upon the black marble foyer. Noise, destruction, silence. This would have been a rather dramatic action given I was once again situated in Te Papa, but I feel such an exploit would aptly demonstrate the frustration consuming me of late. Strangers would stare as I stand with a slightly maniacal grin on my face. I need a minor act of rebellion, it may distract me from the tedium that currently is my life.

As you may have gathered I am yet to start treatment. My excised lymph node provided no conclusions. It is with mixed feelings that I receive these results. No evidence of Hodgkin’s lymphoma (perfect lab speak), some reactive features, some scaring. On one hand it is great to hear that a node displaying disease in December no longer does, however, a negative result in one node does not rule out disease. We are in a situation where we actually require distinct evidence of lymphoma in order to continue, continue with anything. All this result actually does is send me further into the depths of denial.  

These results, or non-results, were delivered to us last Friday in a consultancy appointment. Of course there are further tests that can be performed to confirm relapse, or indeed other diseases. The appointment ended with an impromptu bone marrow biopsy/trephine. Surprise! We’re going to bore into your pelvis! In the NZ vs UK healthcare game NZ gained a point here by offering me anaesthetic gas, gas that I gleefully accepted. The procedure itself was tame in comparison to the one in December, although I did manage to incite a growl from the haematology registrar when I removed the gas to abuse the radio station for their terrible music selection. The gas seeps into the room you see, and then the doctors inhale it, and then they feel ‘light-headed’; not an ideal situation. But back to the music, honestly, this radio station makes Heart seem good. The bone marrow results are still pending.

To further complicate matters, I have not been well this past fortnight. Chills, fevers, sweats, fatigue, tachycardia, irritability (ok arguably not a symptom), raised inflammatory markers, raised neutrophils, no obvious sign of infection; head scratching all around. Is this all really a systemic infection? Could the positive PET scan, which was performed directly after my last ‘infection’ presentation, be a false positive? Apparently this is a possibility. Given it has been nearly six weeks since my last scan, another PET has been ordered. We all know how much I enjoy those, but at least it is something, just something, which may progress diagnosis. I presented in the day ward with pyrexic features about ten days ago, therefore the haem team have decided to wait a little before the scan; they do not want another false positive. This caution will, potentially, go unrewarded as I had a lovely little fever last night implying my reactive state has not fully resolved. Nights are becoming exhausting.

This break in testing allowed us a small window to discuss fertility options with experts. The appointment was Tuesday. Our decision was required Friday. Prior to my initial chemotherapy I was too ill to delay any treatment with such discussions. ABVD does not contain alkylating agents so my natural fertility was likely to be preserved. After my July PET scan I was informed that the next treatment regime will leave me infertile and I had little time to discuss such matters. As it turns out I have not yet turned into a pumpkin although perhaps my carriage has. (Yes, Cinderella is my current literary level.) Upon hearing our fertility options, the procedure, the delays it would cause to further answers, the uniqueness of my case (I would quite like to be utterly normal right now), the chances of success; Mike and I were left with a rather hefty matter to discuss. We responded the way all couples in a healthy long-term relationship would; by postponing the discussion. Repeatedly. I spent the days mulling over the issue, desperate for somebody else to make the decision for me. The day ward registrar (whom I quite like) was having none of this delegation. This was our decision to make, alone. It is difficult to go from having all natural options, to no natural options, to some artificial options, all within a month and without the concrete knowledge that I am actually going to receive further treatment. Small things like twelve-year-old boys spitting on us whilst we were mid discussion certainly did not help the ‘pro’ column. We did make our decision in time. Fifty percent of cancer patients opt for fertility preservation prior to cancer treatment. Just a fun fact.   

    

We remain in our transitory state, our state of homelessness, of unemployment, of bitter Wellington wind. I have not gained medical clearance to fly so have only been home (Nelson) once since our NZ arrival. We remain in our cancer accommodation with fellow transient patients all keen to talk of their lives and, sometimes, their situations. In between my naps and appointments I slink around the communal areas reading the various plaques that remind me who has donated what. I am unsure whether to feel grateful or guilty for such generosity.

I guess the important thing to remember is that refractory Hodgkin’s lymphoma is still the most logical explanation. In my last scan I had lesions on my lung, lesions that look rather like Hodgkin’s lymphoma. I imagine that when the PET scan goes ahead they will look for a larger node to remove. This will probably lead to abdominal surgery. There will not be any definitive answers for a few weeks. I do not expect a negative PET scan. The delays to treatment have not occurred without our consent. I have not yet mentioned the next round of chemotherapy, but just know that the side effects, both short and long-term, are severe. We need to be certain before starting the next phase.

   

What the hell is going on?

Oh, dear body! Why would you engage in grey lipped teeth chattering whilst in an extremely public place? Do you despise me that much? I am aware that the environment in which we currently sit, together, could be deemed overheated, so why the hypothermic shivering? The lady exiting the bathroom did shoot me a rather peculiar look but thankfully did not comment on such ridiculous behaviour.

I am afraid I have little to update you on. Last week the surgical team successfully removed a lymph node from my neck, the same node that was biopsied in December. I feel a little sorry for the node; it provided me with my initial diagnosis and is rewarded with excision. Now it is doomed to spend the remainder of its days in a specimen pottle on a laboratory bench. Some may argue that the node will be immortalised given the inevitable formaldehyde fixation but for me, the node is gone forever. I never even learned his name. Sob, sniff, sniff. Although I have described remorse at the loss of this particular node, remorse does not actually convey how I feel. I am glad the surgeons chose my neck. The only other option was a full on abdominal laparotomy; days in hospital, weeks of recovery, and a rather high chance of some major blood loss. So I was relieved when, after some gentle manipulation from both Mike and me, neck surgery was chosen.

As a child, and some may argue as an adult, I was moderately clumsy. However, despite my greatest efforts, I never required surgery. Sure a few superficial stitches here and there, the occasional scar or two, but nothing a local anaesthetic couldn’t handle. This biopsy was full on surgery; fasting, felt tip markings on my neck, oxygen mask, general anaesthetic, slight room spinning, oh these drugs are quite fun, “keep your eyes open for as long as possible”, as long as possible being about ten seconds, unconsciousness, breathing tube, blackness. At some point, I recall somebody, probably a nurse, asking “can you tell us your name and date of birth?” I could not. I flung my left arm vaguely towards the voice, attempting to direct them towards my hospital ID bracelet. I may not have known who I was but I knew how the interested parties could find out. I, myself, could not figure out how to open my eyes let alone my mouth.

Eventually, I did wake and was surprised at how lucid I found myself. I had a comprehensive discussion with my nurse about Leeds, where he had studied, and conveyed to him how uncomfortable my throat felt, an apparent result of my breathing tube. I was rewarded for my efforts with a lemonade Popsicle. All-right. I will never know how long the actual procedure took but I was unconscious for about two hours. My Leeds nurse disappeared once I regained consciousness. I feel he has the best nursing job; once his patients wake up his job is done and he moves on to the next unconscious patient. Minimal conversational topics required and he probably gets to witness some hilarious awakenings.

Where am I? A post opiate Popsicle

Now we wait for the biopsy results. I recall little from my university histology classes. What I do remember is the tissue preparation process was time consuming, required a finesse I could never muster, and that our instructor had to leave the university abruptly due to some rather shocking criminal proceedings. The third item is, of course, the most vivid. What I am attempting to say here is that histology is tricky and takes a while. It is also a discipline where most of the samples are deemed urgent in priority as they will all be required for cancer diagnosis.

Before I received my distressing PET scan results, the waiting period had a peculiar sombre feeling, as if I was suspended in time rather than participating in it. For reasons I cannot explain, the current waiting does not evoke any ill ease. It is a little frustrating not being able to update anybody, as there is nothing to update, but aside from that minor inconvenience, I am feeling rather ambivalent about it all. There is a risk that denial has crept back into my mindset. In the waiting periods, in the not knowing, there remains a possibility that the cancer no longer exists, the results could be negative, my enlarged nodes could be merely reactive. These thoughts, desires if you will, are not productive. They ought to be cast aside. There will only be disappointment if, or when, such thoughts turn out to be false hopes. This would be a situation where positive thinking is inappropriate. A more realistic approach is called for.

Healthwise I appear to be holding up ok. My blood results remain normalish. An interesting side note; in contrast to most lymphoma cases my LDH levels (an enzyme used to monitor cell turnover) have been normal throughout my illness. The marker of my disease has been my CRP levels. Currently, my CRP sits at 23 which, although technically raised, amounts to a mild shrug and barely audible ‘meh’ diagnostically. Certainly not the 280 odd they were at the height of my illness. So there is little disease progression as far as the lab is concerned. Although I have had (minor) night sweats four consecutive nights now. And there are these bouts of inconvenient teeth chattering….

Since my new PICC line was inserted I have been unable to straighten my elbow. Some wicked bruising and bicep swelling presented Thursday night and kind of indicated that there was more to the issue than mere muscle stiffness. An ultrasound revealed a haematoma near the entry site; good news really as the other possibility was a blood clot. Now I watch with fascination as the bruising extends down my arm, an apparent response of the haematoma to gravity. I am still unable to straighten my arm but the swelling has subsided, not quite completely, but sufficiently. I can at least get my arm through my sleeve now without looking too comical.

And so we continue to wait. Fortunately, our cancer accommodation still applies during this waiting period and therefore we do have a rather comfortable roof over our heads. We are, however, relying on government-funded Wi-Fi, hence the inappropriate shivering in highly public places such as Te Papa or the Wellington library. I am rather appreciative of such facilities!               

Homeless Hodgkin's Lymphoma?

I was wondering if I ought to change the title of my blog seeing as I am now back in New Zealand. Am I now 'away from home'? This pressing issue did not require too much thought; although I may be back in my home country, I am not home. In fact we are probably deemed homeless. I can just imagine 'no fixed abode' listed as my address on my medical records, a phrase I often associate with alcoholic GI bleeds. My conclusion is that changing the name to 'Homeless Hodgkin's lymphoma' would summon the wrong images: plastic bags, rags, empty Tennent's Super cans and hiding under bridges from the bitter Wellington wind; not really an accurate description of our situation. So, for the time being I shall let the title stay as it is. I hope you will all agree.   

This is my first real opportunity to write since our rather abrupt departure from the UK. Emotions have been varied; coming and going whenever they, not I, see fit. Sometimes they linger for a day or two, using their powers for evil, never for good, beating me into submission. My surreal bubble burst somewhere between Gatwick and Dubai leaving a teary, snotty mess and a perpetual trail of soggy tissues literally spanning the globe. Had I begun this entry a week ago it would have had quite a different tone. Perhaps more desperate, more exasperated; but today, alone in my cancer accommodation, I have found a temporary calm. After scouting the various communal areas I have settled upon the library, a small room with fluorescent lighting giving off an office vibe rather than the desired cosy reading den. There are five bookcases lining the walls, bookcases I would like to imagine as my own however if this were so I would be appalled at my own literary taste. Of the shelves there are eight books that I have read (six of which I would actually admit to), one I want to read, one I probably should read and one I may possibly reread. I thought surrounding myself with books would offer comfort, instead they are a distraction.

What has happened these past ten days? Well, tests. Numerous tests. Tests on my kidneys, my heart, my blood; fortunately no tests on my bone marrow although I am sure it is only a matter of time. I have the marks and bruises of fourteen separate needle punctures, some of which were failures. Ok, most were failures. My right forefinger is numb as at one point during a cannulation attempt the needle struck a nerve. Any pressure on my inner wrist delivers the strangest sensation to my hand. Even inserting my new fandangle PICC line proved difficult. The route chosen was through my bicep, and we all know how big those babies are. Hopefully the line should give my poor little veins a bit of a break.

Treatment has not yet started. We are waiting to confirm that the enlarged nodes are in fact the same disease. The prompt relapse after cessation of treatment is rather rare so they, the clinicians, wish to ensure that it is still cancer. I am showing few symptoms (splenic pain, the occasional chattering of teeth and permanently cold feet) and, aside from a mild anaemia, my blood results are particularly normal. A contrast CT scan on Friday revealed no further spread in my assumed disease, in fact some of the nodes have actually shrunk. This is good news for me mentally as I was initially a little uneasy at the minor postponement of treatment, although I imagine the processes in Brighton would have been much the same.

Of course we are left with a similar situation to that of December. I have no obvious accessible lymph nodes to biopsy. All the problematic nodes are nestled firmly in my chest or have buddied up with rather large blood vessels, such as the aorta; using them for protection as an ethnic restaurant would use the mob. I wonder what the going rate is? The surgical team are scheming, deciding which of my little nodal pals will part from me forever. The haematology team are scheming, demanding which node they would prefer to see. The one thing the haematology and surgical staff agree on: nothing would be done on the weekend, so I did at least have 72 hours of liberty.

Each evening is spent toasting, usually with water, my potential last night of freedom. Each morning we arrive at Wellington hospital and the plan changes marginally. I am aware of my failure to update everyone, or anyone, on the goings on. This is due, in part, to the super massive internet black hole I appear to have landed in. It turns out I cannot go a week without being online. I start getting rather cranky. I am a little upset at how much this disconnection bothers me. I also must confess that constant updates and justifications on matters that are changing daily, sometimes hourly, is rather exhausting. Once treatment starts I am sure the updates will become more regular, more concise. The procedures and delays are only occurring with our consent and to be honest I am enjoying the chemotherapy reprieve, even if it is only short-lived. 

Everything appears to be failing me. My phone, my two pens, my body, my memory; they are all slowly giving up. I left my favourite sweatshirt somewhere in Auckland airport, my phone has decided it will receive text messages from my sister only whilst refusing to offer internet connection of any kind, and the two pens I had in my writing bag decided to give up on me simultaneously. This had made my little black book look rather messy and incomplete. There are some who say you make your own luck, I myself am not so sure.