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.

   

To ABVD or not to ABVD?

Apologies, dear and loyal readers, for the delay in this post. I would like to think the delay was due to grand penmanship, developing prolonged suspense, however, realistically, the week prior has been frantic, further adding to my inexhaustible fatigue.  How are you feeling Liv? Tired. Exceptionally tired. This, in essence, means pure laziness on my behalf! So hence this rambling and ill authored apology. Since Monday, the day of reckoning so to speak, I have had my next dose of chemo further adding to my enervation, but I will address all that in another, hopefully imminent, post.  

Monday; 2pm haematology appointment with a jet lagged husband in tow. We had made a list of questions and checked it twice, had brief discussions on all the possible outcomes, crammed research on the various treatment options and, independently, had come to the same conclusion. Which is a nice feeling really, to know that you and your husband are on the same page. There are a few things I wish to address in an attempt to allow you all the opportunity to get inside my head a bit prior to me divulging the outcome of the meeting. I will apologise in advance for any content repetition from previous posts. Essentially, my brain for the last eight weeks has been repeating the same bloody thoughts and overanalyses, so I feel you should share in some small amount of that particular suffering. A further gift to you.

As you are probably all aware and are incredibly sick of being told, I’ve been diagnosed with advanced stage IV nodular sclerosis Hodgkin’s Lymphoma, and the majority of the negative prognostic features associated with the disease. What this basically means, is the lymphoma was in my nodes above and below my diaphragm, in my spleen, in my lungs, in my bowel and potentially in my liver. It was also advancing into my marrow. That sums up the stage four aspect; the classification would have been stage three had no other organs been involved, and stage two if the nodes effected were only those above my diaphragm. The ‘advanced’ aspect is due to the symptoms displayed, or ‘prognostic features’, before treatment started; drenching night sweats, weight loss, fatigue, spontaneous fever, haemoglobin below 100 g/L, lymphocytes below 10% of total my white cells, white cell count above 15 x 10^9/L  and an ESR greater than 100 mm/hr. In fact, the only features I had working in my favour were my age, I am under 45 years, and that I am a female. Oh and the nodular sclerosis subtype was also fortunate. I am unsure what my albumin was, but given they initially suspected cholecystitis, I suspect it was raised. What all this means is that the lovely little five year remission rate of 90% I was informing everyone of, was actually reduced to around 60%. If my two month PET scan was positive, then the remission rate after five years drops to around 28%. Hence, Mike and I both independently agreed that if I was indeed PET positive, we would change treatment regime from ABVD to escalated BEACOPP.  We were aware of all this from the beginning of my diagnosis, so it has been playing on our minds, and my clinician’s mind, quite a bit over the past three months.

There has been an abundance of recent research in the last few years in relation to the treatment of Hodgkin’s Lymphoma, and opinion is divided as to which treatment regime should be adopted. If I had been diagnosed in Germany, the USA or even parts of London, I would have given eBEACOPP from the word go. The reason I was not is that eBEACOPP is far more cytotoxic than ABVD; increased bone marrow suppression, increased nausea, increased fatigue, increased chance of infertility and, most alarmingly for me personally, a vastly increased chance of developing another cancer in the years to come; disturbingly acute myeloid leukaemia was on this list although, granted, evidence suggests there is only a 1% chance of this, but I was not overly happy to see that little nasty there. Another concerning aspect of eBEACOPP is, given it is a pretty new treatment regime, there is not a lot of data in regards to long term side effects. This is ultimately an exceptionally selfish concern. Someone needs to be part of that statistical group, why shouldn’t it be me? I do apologise, once again, for feeling that way. I had decided I would be adopting eBEACOPP should I need to, so I feel that although I had that selfish concern, I was willing to put it aside. It merely occurred in my head. Now I have passed the thought on to you. Judge me as you see fit.

Have you had enough of this preamble? I think you all have the general gist in regards to the state of my anxiety. Should I progress onto the actual guts of the appointment? I do hope that those of you uninterested I the scientific and medical aspects have simply skipped to this paragraph. I do confess the previous paragraphs read somewhat like a reflected learning piece; CPD points anyone? Well just to further the scientific parts, I do have to correct something I wrote in my previous post. I reported that in the PET scan therapidly dividing cells were red and angry. This is not the case. They show up white. The non-cancerous cells are still dull and grey, so those of you supporting me in the wish to resemble a New Zealand First supporter in my second PET scan can take heed that your wishes were still correctly directed.

Ok, enough of this! The appointment was scheduled for 2pm, as I have mentioned. It was held in the renal ward (clearly the NHS is adequately funded) so Mike and I were waiting amongst those about to receive dialysis. We were still talking about worse case scenarios and all that jazz when my Macmillan lymphoma nurse called me through. In my haste, I dropped my winter coat on the floor, then my gloves, then my hat. I have always been known for my super-cool qualities and calm head under pressure. It says so on my CV so it must be true. Once I managed to salvage my wardrobe from the floor, we toddled on through to see my consultant. On Monday mornings there are haematology meetings for all the clinicians along the South Coast discussing results and cases. This is fantastic; it means if you happen to see a different consultant they are all clued up on your case, and it means there is extensive collaboration in regards to treatment options. As far as I am aware, my PET scan results came through Monday morning, so my consultant had only just discussed them at the meeting. She could barely contain her excitement. In fact, I would say that she didn’t contain it at all. I hadn’t even taken my seat before she told me she had fantastic news, beaming from ear to ear, informing me that I was PET negative. We got to have a look at the first and second PET scans side by side. My spleen was the best example. On the first scan it mirrored a BNP supporter – you know white, large, angry and causing a lot of pain. On the seconded scan it was a lovely conforming grey. No more splenic involvement. Why does it still hurt then? Well it could be that I have falsely accused it as the root of all of my discomfort (much like a BNP member does to the rest of society) or the nerve endings are still aggravated so therefore it is kind of a referred pain. We don’t know yet. What I do know is that it still hurts, as does my upper right side, however my gall bladder pain has subsided, a fact I had mentioned to Mike prior to finding out my results. So it isn’t all in my head.

What does all this mean? Well it means I still have four months of ABVD chemo left, but that my chance of remission at the end of the treatment is now very high. It also means the chance of me being clear for the next five years is very high. This is all good news. How do I feel about it all? Well, trick question, I feel exceptionally tired. Sorry, bad joke. No, I don’t really know how I feel. I had so mentally prepared myself for bad news that the so called good news has not really sunk in. I still have four months of fatigue, nausea, hair loss, pain and general crappiness to go, and I am not really looking forward to it. But the option of not having those four months was never there, so I do not know why I am feeling sorry for myself. A number of people have said ‘well done!’ I find this an interesting turn of phrase. I haven’t done anything. I think it became apparent when I started to refer to my body in the third person that I had lost all control over it. Of course I never had control. If I had, I would not have got cancer in the first place, I would never have caught a cold in my entire life, I would have never suffered through chicken pox and I would be able to dunk a basketball despite my 5’6” stature. I have done nothing to deserve commendation. All I have done is sit around literally pulling my hair out and typing a whining blog about how terrible I feel. Nothing praiseworthy in that!  How do I feel? I cannot really tell you. I still cannot plan my thirtieth birthday merriments despite the high odds that I will be in remission. I still cannot plan Christmas.  I think all the positive thoughts and celebrations will kick in around the 30^th of June, when the finalities of the disease are apparent, and the bloody chemo is finished. So do not fear! You still have four months of whining to look forward to. But it is good news all round, and I did smile, and Mike and I did share an inappropriate celebratory peck in the foyer in front of all the poor bastards waiting on their regular life dependent dialysis. 

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.