Chemo round three... It may be getting easier

Apologies to my dear avid readers for not posting a pre chemo brief. I had intended to, however for a couple of inadequate reasons it did not end up happening. Namely, I was acutely aware that I had already had one strop of a post earlier in the week, and did not wish to burden you with a second so soon after. Also there was a degree of laziness involved; a rather obtuse degree. 

My weekly bloods displayed a neutropenia warranting at least an eyebrow raise had I been validating the results at work. A level of 0.4 x 10^9/L of blood (a good scientist would have published this unit already), so we are getting clinically low now. I received my reliable Friday night phone call from the haem day unit, again mid-wine but fortunately pre-rugby, to inform me thusly and tell me my prize…. more GCSF injections! Three in fact, on concurrent days. The GCSF is kept in my fridge which creeps me out; my occupation conditioning requires strictly separate food and medical fridges. The only upside to my ever increasing appetite is that the subcutaneous injections are now much easier. It turns out weight loss may no longer be an issue.

I had been forewarned that GCSF makes some people feel a bit crappy, however, other than the previously mentioned sternum pain, I didn’t have too much strife the first time around. This time was not as successful. The promised ‘flu-like symptoms’; vomiting, aching, no sleep, more bone pain – both sternum and pelvic this time, were severely apparent. Mike would probably like me to also mention crankiness, but personally I think he is a little biased and this isn’t his blog anyway. There was a particularly low point Saturday afternoon, my head down the toilet heaving my guts up, tears streaming down my face, nose bleeding into the bowl, our toilet seat is broken so I am holding it up with one hand all whilst my body has decided to shiver uncontrollably. Potentially a Hunter S Thompson moment, although at least he got a buzz, all I got was a cytokine release. At the time of this despair it was difficult to ascertain whether it was due to the GCSF or, possibly, neutropenic sepsis. As you have probably noticed from previous posts, I have become rather neurotic since this pesky diagnosis. Fortunately, my temperature never breached the designated danger point of 38°C, and my previous CRP had been a staggering 1 mg/L, so the GCSF was attributed with the blame. 

Subsequent to my Sunday evening injection I was lucky enough to enjoy an all over body itch. Whilst silently thanking myself for having the forethought to trim my fingernails earlier in the day so I could go all out with the scratching, I was hit with a most unusual sensation. It was as though I had jumped into a pool of pop-rocks; an all over body tingling, which had the potential to been a kind of cool experience but instead it was entirely unnerving. Throw in some rigors for good measure (my body never fails to miss a good shiver if the opportunity arises) and I was totally freaking out. Scrutinising the drug information insert did nothing to relieve my concern, but did inform me that the vomiting could fairly and squarely be blamed on the GCSF. A quick google search gave me nothing but the certainty that I had febrile neutrophilic dermatosis (I didn’t) so I threw back an antihistamine and a not-so-magic pill and let the night put an end to my misery. 

I awoke alive, which is a plus in my books (as the great Tommy Ill would say) so it can’t have been too serious. Although it was Monday which, as the title of this post has promised but so far not delivered, was chemo day; a leisurely 2pm appointment. My attempt at losing a Civilization V scenario was interrupted by a call from the haem day unit around 10am politely inquiring where I was as they had expected me in at 9am. My timeslot had been changed; I hadn’t been notified. A power shower, a very well packed lunch from Mike and a taxi ride later I arrived flushed at the unit blubbering about a mix up in times. Who would have thought I’d have been so eager? Mike was tasked with collecting my parents at Gatwick after their thirty something hour flight from Auckland, so I was flying solo this time. Some may argue he had the harder task.

Once I had regained my composure (let us assume I had some to begin with), I noticed with unrelenting horror that I had lead you, my darling readers, astray! The previously mentioned oversized salmon chemotherapy chair is not even close to salmon in colour! More a dull hot pink, which I guess just makes it pink. I apologise profusely for leading you down this incorrect path of imagination. Although, I believe I did publish a photo last time, so most of you were probably aware of my inability to correctly describe colours before I was. Nevertheless, the apology still stands. 

My sister had given me a tremendously tough personal best target of five hours, but I was up for the challenge. The Friday neutropenia resulted in further blood tests, and therefore another pre-chemo wait, however the cannula went in without a hitch, so I was feeling confident I could achieve her ridiculous goal. Unfortunately my faithful laboratory friends had other plans. At least a 2.5 hour wait for the neutrophil count, a count around the 27 x10^9/L, so rather elevated. I like to think that a rip-roaring blast flag, some poor clinical details and a panicked urgent blood film requiring a manual differential was the cause of the delay. As I have alluded to in the past, I do enjoy a bit of drama. Whatever the cause, pharmacy had definitely brought their A-game that day, I think I had the drugs within the hour, but even with this promptness my five hour objective was already looking shaky. 

My chemo has arrived, the old lady opposite is giving me a scowl. She has been waiting for as long as I, in fact her transport has already arrived to take her home, but there is no sign of her therapy happening anytime soon. I have a brief discussion with the nurse about my previous darcabazine reaction, but couldn’t convince her to give me an antihistamine to cover me. This should be fun. The A, B and V infusions go well, even my previously documented agitation as a result of the vinblastine was absent. I was pretty chuffed, I am knocking on the door of five hours biatches! But no. Darcabazine time. The prescribed infusion rate means it should all be over in thirty minutes, but the nurses inform me that no one has ever managed that. This may sound like a challenge, but I can assure you it is not one I will ever be attempting. They set me up with a ninety minute infusion, and not even five minutes in I am thrashing in agony. Honestly, how cytotoxic is this drug? Is actually stripping the endothelium from the inner my vein, whilst bursting every valve it is passes through? Because that is what it feels like. A viscous blob slowly destroying my insides. No wonder my spleen is causing me so much pain. In what I wish had been a much calmer voice, I plead for the nurses to decrease the rate again. I can imagine my sister, had she been there, feeling a perfect revenge opportunity had arisen; revenge for all the ultra-marathons where I have denied her a rest in order for her to achieve her target. Thankfully, she wasn’t there to utilise such an occasion. 

The pain is still epically present, but it seems to reduce somewhat if I drape my arm over the side of the chair and hold it perpendicular to the floor. Unfortunately this draws attention from the nurse, and she turns the infusion rate down yet again. Is that a wry smile from the old lady opposite? I think it is. I expect you all to be judging her accordingly right now. Despicable behaviour, having therapy races. Given her age, she was probably a pro. I am still a rookie. Tut tut. Despite the further reduction in infusion rate, now in excess of two hours, my arm still needs to be held at a right angle in order for the pain to be remotely bearable. I find a more subtle way to achieve this, the old ‘I am actually holding my book comfortably whilst resting my elbow on the arm of chair’ routine. You should try it sometime.

Furthering my torture, the ‘ever eager to beep’ mechanism the infusion runs through has an unavoidable ‘time remaining’ countdown on it, persistently informing me of my imminent failure. I am pissed off, Mike has already completed his mission and wishes to come and join me since I am having oh so much fun. Is he rubbing his success in? Has this become some sort of Amazing Race episode - chemo vs husband vs old lady? He is getting one word responses. When he does arrive I am relieved he can read through my tough texting exterior, because although, to be quite honest, this was easily my best chemo experience thus far, I was still very close to tears. And crying would have given that old lady far too much pleasure. Two hours later we were on a bus, total time of six and a half hours, still a personal best, but only narrowly.

Now, Tuesday morning, I am not feeling too bad. Certainly the best I have felt the day following chemo. I am pale, with dark grey bags, but am comforted by the current Topman model; apparently the cancer patient look is in this season. I was just now thinking that the colour of my nose would put Rudolf to shame, then it started oozing blood. Obviously my nose does not take kindly to such compliments. I have bruises down my left arm, not only down the entry vein, but bluish purple tracks running entirely down my forearm as well. At least I have something to point to and cry “I am not exaggerating, the pain was shocking!” A poorly scheduled fasting ultrasound appointment means I am trying to quell my insatiable appetite with the horrid mouthwash and copious amounts of water, resulting in frequent trips to the ladies, where I am rewarded by catching a glimpse of my Knight of the Woeful Figure reflection. On the positive side, I still have both my ears.               

I would like to take this chance to thank everyone back home for all their kind words, cards and gifts that my parents brought forth from Aotearoa, they were very gratefully received, and, in most cases, heartily devoured. Thank you!

I am about to throw a tantrum

I warn you, this will most likely turn into a giant ranting moan. One long list of complaints, confirming that I have resided in England long enough to conform to the stereotype.  Ah, some casual racism to start the whole thing off; it is mere banter my English friends! I have only met one or two that fall into the alluded classification, and I choose not to associate myself with that minority. Hmmm, shall continue in an attempt to dig myself out of this hole? Do you have the time, to listen to me whine? (I am sorry, the song just came on my playlist and the timing was too perfect not to include.)

Where to start? Well, I can tell you that I am nearly ready to tag out. I have had enough and do not care to participate any longer. My team has fallen apart; the key players are starting to act as individuals, maybe in the hope of glory, who knows? I have grown tired of the prolonged anatomy lesson my spleen is giving; I have never enjoyed anatomy anyway, this is the reason I suck at it. Physiology, that is fine! Do your thing little organ, I do not need regular updates. Yes, I know you are underrated but you’ve always been one of my favourites, so there is no need to persist with this pain. I think it is ignoring me. I should probably be thankful it doesn’t have a twitter account. Incidentally, an enlarged spleen is called splenomegaly which, let’s be honest, is a fantastic word.

Directly opposite my spleen, a lymph node is causing far too much grief. I know it is enlarged, but the pain it is instigating is disproportional. I am so disgusted with this particular node, which probably has a biological name but I refuse to memorise it as a display of my indignation, I am not talking to it. So, no lecture for that nameless node. Having these two complaints leads to bilateral discomfort under the edge of my ribcage. [Bilateral is probably the wrong word as I only have one ribcage, but I can’t think of a better one so we’re just going to have to deal with bilateral. It describes what I mean.] This discomfort makes sitting, currently my most prevalent pastime, unenjoyable. My already pronounced slouch tends to accentuate, causing my biopsy node (either subclavicular or lateral – I have already explained my weakness in anatomy) to hit my collarbone and pipe in with its own qualms. I am sorry my friend! I know you have been through a lot, but please, just because the others are getting attention does not mean you are allowed to interrupt. Honestly, they’re worse than children! Currently, my favourite tumour resides in one of my intercostal nodes (lower abdominal). It is the one that is reaching into my bone marrow and my bowel (yup, stage IV folks). It is my preferred because, although a delinquent in the past causing the most damage and the most pain, it is now causing far less than it was and far less than the aforementioned parties. Silently doing destruction behind my back. Or into it.

Above my thoracic (an important distinction) diaphragm, my chest hurts in a multitude of different ways; more ways than ever I imagined it could. Thanks to the GCSF, there is a crushing aching sensation in my sternum. Thanks to the chemo, there is a course raw feeling in the mucous membranes lining my oesophagus. Thanks to the small (very small) masses in my lung, it burns to breathe. Thanks to something I can’t explain, the back of my throat aches, as if I am perpetually on the verge of a cold. I have ulcers on the inner of my bottom lip, and a cold sore is forming on the outer. I was offered a choice of mouthwash flavour; original or mint. I replied that it didn’t matter. It totally matters!!! Original has the taste of what I imagine most industrial chemicals taste like with a splash of aniseed. The bitterness lingers throughout my mouth for hours afterwards, marring any food I try. I will concede that the wash does seem to be working on the ulcers though.

The dacarbazine is causing some serious vein irritation. The entire length of my arm burns, culminating to a persistent stabbing ache on my inner arm at my elbow joint, or at any point I happen to put a little pressure on. This leads to gammy arm holding, which in turn leads to painful arm muscles. The bruises I obtained during the great cannula experiment ten days ago are still prominent. My skin is blotchy, my cheeks puffy, my hair thinning, yet, amazingly, still able to display uncontrollable volume. Due to the increasingly not-so-magic-so-therefore-rationed sleeping pills, my balance, which has never been a strong point, is fairly unsteady. My body moves but my legs lag behind. Cue some very close calls, a few unnecessary bruises and some gallant saves by Mike. Luckily, I am now light enough for him to catch me.

I am about to continue my complaining, but I am going to include a symptom that, until now, I have refrained from mentioning. If you truly do want to know the depth of my despair, I feel this aspect really brings out the sorrow. So, although I will use as many euphemisms as possible, anyone who wishes to avoid reading about my lower intestinal complaints, ought to skip ahead to the next paragraph.  Here goes. Argh, the anti-nauseas, the not-so-effective painkillers, the not-so-magicsleeping pills, they all accumulate to form a rather uncomfortable situation. I finally understand why people take reading material to the restroom. Thankfully, I am presently reading Don Quixote; 768 pages should be long enough. I know I am in a pretty dark place when a bowel movement is not only my biggest achievement of the day, but one I am excited about. Is it appropriate to have a desire to phone your husband after going to the bathroom Randy Marsh style? Or to fist punch the air and dance through the flat celebrating your success? Don’t worry, I have only done the latter. The doctors can’t prescribe a prolonged course of laxatives because you tend to become reliant on them. I am fairly certain there isn’t a support group for that dependency.

My attempt to make this post more positive

Welcome back to any readers who avoided that last paragraph. Be rest assured that whilst you were away, the sunset over the terraced houses and the British Channel illuminated the charcoal clouds with warm pink and auburn hues, however the photograph I captured through the grubby jammed window of our top floor flat just dose not do the beauty justice. [This is what happens if you avoid toilet humour. You get crap.] I would like to give a shout out to my liver which, despite being picked on by its neighbour, is behaving enzyme wise; my kidneys - both are doing standout job filtering all the cytotoxins pumping through my veins; my pancreas - because I don’t want to piss that beast off, and finally to ya’ll out there; writing this has greatly reduced my frustration, meaning my lovely, amazing, caring, stunningly handsome husband will receive a significantly scaled down whinge we he arrives home.             

In December, I was privileged enough to have a bone marrow aspirate….. and a trephine

This was karma kicking me in the ass. Literally. Hopefully I will allude back to this statement and, in time, it shall make sense. Knowing me though, it will be later rather than sooner; I do seem to go on a bit!

A bit of background info: Hodgkin’s lymphoma is very rarely seen in the peripheral blood. I have never seen a Reed-Sternberg cell in a blood film which, although mildly disappointing for me work wise, is good news for any patient. These cells are also rarely seen in the bone marrow. Armed with this knowledge, I was hoping like hell that I would avoid a bone marrow examination. However this was delusional; a bone marrow biopsy was always going to be necessary, and I believe past Liv was aware of that fact but, for some reason that seemed appropriate to her at the time, chose ignorance. So let us hear of past Liv’s tale and get away from this ridiculous third person perspective that has developed and will be far too difficult for me to maintain.

I was scheduled for a lymph node biopsy, however, due to complications I will probably explain in a later post, the biopsy did not go ahead. I had been impatiently sitting in my bunker ward (seriously a bunker; the walls were lead lined due to the extreme levels of radiation used in treating gynaecological tumours during the 1970s) all afternoon awaiting my summonsing to the ENT theatre, when, around 4pm, the haem team made an appearance. The biopsy isn’t going ahead today, but they wish to do a bone marrow. Tonight. Faarrrk. I have this irrational queasiness with bones. Yuck. Shivers down spine, goosebumps, teeth clenched, skin-crawling ickiness has come over me just writing this. When I was a trainee I had managed to dodge witnessing a bone marrow. I think we were meant view one, however it just ‘didn’t end up happening’. I don’t know why. Subsequently, I never really learned the difference between an aspirate and a trephine and my knowledge of bone marrow biopsies (other than morphological knowledge – which to be honest is pretty weak) extended to a word-of-mouth ‘this is the most painful experience aside from childbirth’, and a basic theory of how it is undertaken. An aspirate is bone marrow fluid, a trephine (which means ‘to bore’) is bone marrow tissue. I just looked that up. 

Cue karma. Having avoided observing such an event eight years ago, I was now going to be an active participant. Great work 21-year-old Liv. Thank you ever so much. Mike had told me I needed to be brave for each procedure (this was my first invasive one), but in between each I could breakdown as much as I wanted. As he said this, all I could think about was Catherine in A Farewell to Arms. At 7pm, after three hours of stewing, I was informed a porter was coming to collect me. Butterflies flew into my stomach. When was the last time I had butterflies? I thought they had died when I stopped eating Chupa-Chups. [Complete tangent here, one that is not scribbled in my little black book, did anyone know that Salvador Dali designed the logo for Chupa-Chups? I only just found this out. Not his finest work, granted, but I may have to frame a wrapper just for the sake of it. It is the only way I will ever own a Dali. I love Dali.]

Sorry about that. The porter arrived around 730pm. It is totally ridiculous. I was perfectly capable of walking, but due to section one million three hundred and sixty two of the NHS Health and Safety policy some poor bastard has to wheelchair me the two miles from the cancer ward to the haem ward. Hyperbolic enough for you? I guess this is why I have a ‘dramatic’ reputation. Four separate lift rides later (I’m not exaggerating this time) and there Mike and I are waiting for the haematology registrar. I am now in full blown anxiety mode. My stomach muscles are tensed enough to be classed as an ab workout, and I have made an unconscious decision not to breathe… I was grateful that during the brief chats I’d had with the haem reg she seemed fairly onto it. OK, I may have tested her. I have reason to! There are some, if not many, I have come across that would not be getting anywhere near me with a boring tool. 

Eventually I am escorted into what is quite clearly a renal treatment room and not a bone marrow biopsy room. What sort of Mickey Mouse outfit is this, using a makeshift marrow room? With a trembling hand I mark a signature, one that would never hold up in court, on the necessary paperwork. The paperwork informs me that I am aware of the two possible side effects – bleeding and <1:10,000 chance of infection. All this nervousness, all this anxiety is caused by the prospect of pain. Temporary pain. It is ridiculous how my brain works. 

Any squeamish may wish to stop reading here. 

The marrow sample is taken from the iliac crest, so fortunately I am not required to see the size of the screws or the needles. Nervous chatting kicks in, mindless, uninteresting dribble: don’t distract the lady with the giant needles Olivia! It turns out the bone is numbed with these giant needles. I wasn’t aware of that, I thought I had to do it the macho way. Once the bone is numb, she hammers into it, which is bloody weird. I can tell exactly what is going on, yet technically I can’t feel anything, just pushing, and pushing, and wow yip that is her entire bodyweight behind that tool, and resistance and then nothing. Oh well that wasn’t too bad now was it? No it wasn’t. Ok then, let’s start the chatting thing again to let her know how tough you’re being – “How did my blood film look by the way?” Now is not the time for such questions - I get a brisk response of “fairly normal – you are about to feel a shooting pain down your legs….” I let out a rather audible gasp. Then I blush. The pain wasn’t even that bad. Kids go through this far better than I. I am breathing excessively now, and between my wheezes I assure the doctor that I can handle the shooting pain…. “It’s ok, it’s ok, that wasn’t that bad, I can handle the shooty pain” (yes reverting to five-year old speak) “Well, that pain is over now.” 

What comes next is the trephine. The technique is to screw a boring tool into the marrow as deep as possible, which is to say as far my pain threshold will tolerate. I am aware of the pipe sticking out of my back as she changes tools. Again, with her full weight behind her, I feel pressure as she turns and turns the screw. With each rotation the pain increases. Not a shooting pain, but more of a ‘someone is screwing something into your bone’ type of pain; an entire body ache which is slowly becoming more and more agonising. At some point I am give myself an internal high-five for being so quietly staunch. My cockiness is then rewarded as I let out a dying wookie sound “Woaaarrrrrowghffff”. She stops. “Well, I can remove it now, but there is a risk that there will not be enough and I will need to redo it” “KEEP GOING…. I can keep going”. She keeps going. I do not make it much longer. Maybe half a turn. The seconds it takes her to make the slides pass with excruciating slowness. “There is enough here, we’re done, everyone finds it difficult their first time” (There had better not be a second time). 

“I’m not brave any more darling. I’m all broken. They’ve broken me."

With my breathing still heavy and an almost non-existent thumbnail (staunchness my ass), I stumble out of the room, down the corridor to my husband without saying a word to the lovely registrar. Then I throw up. Thankfully I made it to the bathroom and no one witnessed the event. I had myself so worked up over something that was essentially 5 minutes of pain. But there was definite pain. When I was researching the difference between the trephine and the aspirate, I read on the Birmingham Cancer Network’s website a description about the procedure. They wrote that you “may feel some pushing and slight discomfort, but many patients do not feel any pain at all.” Now I know they breed them tough in the Midlands, but I feel the procedure has been vastly downplayed. Yes it wasn’t as bad as I had expected, yes I got myself overly worked up, and yes they gave me enough morphine afterwards to enable some pretty choice dreams, but I put it to the Birmingham Cancer Network that ‘mild discomfort’ is a gross understatement.