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.                            

PET scan and PICC line anyone?

It has been a hectic week and I have felt like crap throughout. Currently I am enjoying a Renaissance Cherry Porter, so bliss is very near. This gives me an opportunity to recap on my week and hopefully restrain me from complaining too much.  Here we go…

I feel I may have built up far too much suspense in the ending of the previous paragraph. Sorry about that. Essentially, last week I had chemo Monday, overdid things Friday and spent Saturday and Sunday paying for it dearly. Sunday, I busied myself in differing positions of horizontal; lying in bed, lying on the couch, lying on the floor. I was so exhausted I could not even formulate replies to text messages. Sorry to those affected by this. I know hearing from me is the highlight of everybody’s lives. Fortunately, sleep came readily; I did not even need my nearly-empty-calorie-pills, which is good because I did not have any left, and my biological resistance to slumber inducing substances has reached the level where one antihistamine just doesn’t cut the mustard.

I suspect this current bout of woefulness is in part due to dread. My second cycle of chemo is now complete and this is a magic line in the sand kind of moment, as my treatment and prognosis after this point is dependent on the progress of the chemo thus far.  I am sure that all makes sense. Basically, I had a PET scan prior to my first chemo, and another one yesterday. If the tumours have reduced in size and prevalence, then yay, I stay with ABVD. If not, then treatment options need to be reassessed. This could mean a relatively new regime named escalated BEACOPP (I know very little about it) or, although highly unlikely, an autologous stem cell transplant. I will explain what that means if or when I need to. I won’t find out what my next type of treatment will be until Monday, when the results of my scan are known. Fun times.

Shall we talk about the PET scan then? I had intended this as separate entry, another retrospective one, however I never got around to it so I will do it now. The science behind this is quite cool. They inject a radioactive variant of glucose into you whilst you are in a fasted state. Tumour cells metabolise glucose at a much higher rate than regular cells, so in the PETCT scan they show up all red and angry, while the normal cells are grey and boring. We like boring. Everyone hope for boring. Right, so, I have to be in a fasting state, on the first scan this was fine, it was a 10am scan so it was no big deal. Yesterday it was a 1pm scan; I went from fasting to famished. I had retired to bed at a spritely 9pm the night prior, so by the time my appointment rocked around I’d passed hangger and moved on to total lethargy. I gave vague responses to the multitude of poorly put questions. They were particularly unimpressed with my response to the “Any chance you could be pregnant?” question; “I am pretty sure the chemo would put stop to anything like that”. Not the correct answer, just an FYI. It is crazy that pre-treatment they prep you on the odds of infertility and the like, and then any chance they get they like to ask you if you’re pregnant. I am not, I do not plan to be, and I am pretty sure my body wouldn’t be able to handle it if I was. It would tag out. Game over. Ok so no jokes allowed, granted it was a rather dark one, but I guess we are technically dealing with physicists here.

Once that rather dicey question has been inadequately answered we get down to the fun stuff. The lady (whom I fear I have portrayed negatively when actually she was quite lovely) fetches her radioactive glucose, it is kept in a metal case, in a metal syringe, and looks like something out of a Bond movie; she is donning a full lab coat, gloves and a radiation counter. The cannula is inserted into my right arm (last week’s chemo arm, so already in an utterly pitiful state), and promptly the substance is flushed through my veins. Boom! I am radioactive. I feel like I should have gone all Peter Parker on everyone. Unfortunately I was instructed to lie as still as possible for an hour. Absolutely no leaping with spider like projections from buildings. Damn.  I am not even able to read, as that demands an unfair proportion of glucose for my brain and they would like the distribution to be equal throughout my body, please. As I have mentioned, I was feeling crap, very very very crap. I think I may have slept; the drool present on my face when I was collected would definitely lead to such a conclusion. I was instructed to ‘pee’ (he actually used the word pee, which at least drew a smile out of me) using a separate toilet, as I am radioactive you know.

Then comes the scan. The scan sucks. You have to lay totally still for like 30 minutes, whilst going in and out of a prolonged CT scanner. Oh and you have to keep your hands above your head, still. This was hard enough pre dacarbazine - have I mentioned how much dacarbazine makes my arm ache? – but post chemo it was horrendous. Deep breathing and, I believe, some quick scanning by a fellow antipodean, meant I got through it with only the bare minimum of tears. I think at one point I may have shouted “I can’t go on!” a total “Do it to Julia” moment. Big brother was totally watching, cameras, microphones, the works. Who would have thought room 101 for me was purely keeping my hands above my head for half an hour? And I was a basketballer. I need to toughen up.

That brings me to today. I cannot recall if I have yet mentioned that my arm hurts a mighty lot after chemo. Well it does. It does so much that I have neglected to write this entry into my little black book, as my right arm was my chemo arm this time, and it is unable to hold a pen. So I am going full tilt on the typing, which to be honest, does little to relieve the pain. But do not fear dear readers! I have come across a solution. This solution is a PICC line, which I had inserted today. A PICC line is inserted just above the elbow joint. Using ultra sound and local anaesthetic, a wire is thread through the vein, running just under the fourth rib and into the heart. A tube then surrounds the wire, and a cannula is attached to the tube. No more needles, and a lovely little protective sheath for the dacarbazine (if indeed that is the drug of choice) to pass through rather than the vein. And, above all, hopefully no more bloody arm pain. Except now I don’t know which pain is caused by the darcabazine, and which pain is caused by the PICC line. What I can tell you is that occasionally I feel the line tickling my heart, which is a little disconcerting. It does cause sporadic heart palpitations, but it doesn’t hurt anywhere near as much as my spleen. I don’t think a splenectomy is on the cards, so don’t get your hopes up on avoiding that complaint. And the rest of my arm is still in agony from last week’s darcabazine, so I will be inclined to moan about that for a wee while longer.

Does this thing work for caffeine or alcohol as well?

That is my week thus far, I keep thinking paracetamol doesn’t touch the darcabazine arm pain, but then the drug wears off and anguish again sets in. I have a proper purple vein this time, still a little bruising, and a slight uncomfortable feeling in my chest when I slouch or breathe too deeply. They have x-rayed my chest to see where the line is sitting and everything is as it should be, so I guess it will be a feeling that, in time, I will become accustomed to.