Mushy peas

I know I promised this post would be more positive than the last. I am afraid I cannot keep

that promise. This post is again selfish. It is for me to vent, to dwell, to wallow in my own self pity. I am writing this to get the words out of my head. And my brain remains as mushed as a side of peas, so none of this is likely to make any sense. Continue at your own risk.

When I presented at Wellington Hospital in November with my crooked tongue, I was required to switch steroids. My steroid of choice is Prednisone. I’ve grown fond of it over the past year, and the dosage I was on (15mg) gave me all the Prednisone-goodness, without too many side-effects. I will complicate things here and say that because I am on immunotherapy, I ought not to be on steroids at all. Zero steroids is the aim, but well, they’re just so darn helpful. So roid me up. Anyway, presenting to a hospital with neurological symptoms gets the doctors a little nervous, so they switched me to Dexamethasone. Apparently Dex is like the go to steroid for reducing brain inflammation. Apparently I had brain inflammation. The neurological symptoms also meant that my nice low steroid dose was about to be upped. And boy did they up it. I am really quite susceptible to steroids, and my consultant knows that, but he was away and so they just prescribed the highest dose available, which is the equivalent to 100mg. I’m tweeked out at 60mg; at 100mg, my goodness.

Sleep was off the agenda. Food became a major focus. Then it became an obsession. It was exhausting. It started out fun; a little like ‘yay I can eat whatever I want, whenever I want, almost unreasonably.’ Then the ‘almost’ was dropped and it became simply ‘unreasonable’. I was knocking back six or seven meals a day, with snacks. I became fixated on food. I was lying on the couch, overfull, bloated, yet obsessing over the ice cream I knew was in the freezer. If I eat that ice cream I am going to feel terrible. But I want the icecream. I know, I will have just a small serving of ice cream. That will work. But our bowls are so big, and it was boysenberry ice cream, so I ended up with three scoops. One morning, I consumed an entire packet of TimTams in ten minutes. That is less than a minute a biscuit. I was going to dip them in my coffee, but there just wasn’t enough time to brew the coffee. No time for coffee! That was after my four AM cream cheese bagel. Let us just say that it was an expensive few of weeks. Now I can’t remember if we’ve got snacks in the house, and even if we did, I can’t taste anything except Habenero sauce (another radiotherapy side effect). Thankfully, the steroid dose has dropped, and my food fixation has passed.  

Unfortunately, three weeks of binge eating really plays havoc on one's weight. My face is round and puffy, like a partially deflated beach ball that has spent too many summers outside. I’ve lost almost all my hair. This, again, is due to the radiotherapy. It causes hair loss at the targeted site, and because my whole head was targeted, I got to lose it all. It fell out one afternoon while the cat sat on my knee. She finally got her comeuppance. Some stubborn patches of hair remain, which is uber attractive. Plus I have some wicked acne, perhaps caused by all the junk food. I am looking gorgeous for summer. But don’t worry, I did spend like an entire hour deliberating an eyebrow wax. I decided no. Nobody is looking at my eyebrows.    

That just leaves the brain mush. The fatigue. My brain is so slow. It is too slow for everyday life. Everything has become so difficult. It is like 90% of the batteries that provide my mental energy are exhausted, so I am running on just a tiny energy store, and I can only give a minute portion to any task. I sit at a cafe, and a sharing plate comes out. Ciabatta and balsamic and dukkah. Simply eating requires considered effort. My deliberate thought process is thus: OK so person A has finished reaching for the bread, and person B is reaching for the dukkah, so I can reach now, I need to move my arm straight out and take the bread without bumping anyone and now I need to stretch to the balsamic and, opps, balsamic was thicker than I thought and I have spilled it, and oh oh my hand is shaking, no that’s ok, it has steadied, right so the bread is in my outstretched arm, so I need to bring my arm towards me and lift my hand to my mouth. Ah fuck, I just dropped everything on my white top. It required immense energy and mental thought to reach for some bread, and then I messed it up. Which is fine, if I can laugh at myself, but it is extremely frustrating and sometimes I cry. In public.  

My personal deficiencies are amplified in my current state; things that I have never been good at I simply cannot do. I've never been good in social situations. It takes a lot of background effort for me to know what is socially appropriate. When to talk about certain issues, where to stand so that it doesn’t impact on others, how to sit at a dinner table; all this requires quite a bit of thought from me. And often, even before this brain mush, I'll catch myself doing something antisocial, like putting my finger in my ear. Now, I cannot do two things at once so if I am listening to somebody, I can only think about what they are saying. I cannot think about my posture, or my elbows on the table. I cannot eat, or even contribute to the conversation. My verbal communication was always poor, now it is pretty much absent. I am unable to formulate responses fast enough for society. Basically, guys, I can no longer rant. I can no longer listen to a rant, I can no longer contribute to a rant. My brain is too slow. For three weeks I could not concentrate enough read. Writing, fine, I have a lot of internal dialogue, background brain noise if you will, so I can pen my own jumbled thoughts. But reading was pretty much impossible. I had pretty much lost my brain.

There have been instances where I could not communicate at all. I forgot how to form the words. These instances were short-lived, only a few minutes at a time, but I’ll confess that I panicked. A quickening of breath, more tears. All I wanted to say to those around me was that I couldn’t think, but I didn’t want anything and I was happy and grateful that they were helping me. Instead, I hyperventilated and cried. I was finding life amazing, but I relied on others to think for me, to fully care for me, and I felt I couldn't communicate with them. This was more than merely accepting that I needed to ask for things, I actually had to think to ask for things. And then I couldn’t remember that I was required to ask. Does that make any sense?

It turns out I had a pretty good memory. It turns out I relied on my memory to exist. Once I lost my ability to remember, to tell the time, to do math in my head, I became aware of how others think. Because they were thinking for me, I began to understand their thought processes. During a public meltdown involving an op-shop Xmas tree and three decisions, I received a moment of true empathy from a stranger. She looked at me with raw sympathy and said “Oh, you’re really tired aren’t you? I get that way sometimes. Here, sit down.” There is a difference, you see, between understanding and empathising. Up until now I'm not sure that I have ever empathised. I mean, I would get sad if someone else was sad, and I would be sad for somebody, but I never really stopped and took a moment to get inside their mind. I have become aware of how intolerant I was, how particular I was, and how I never tried to understand let alone empathise. I am lucky that I now realise this, and that I have the opportunity to change. I need to maintain this compassion. Feel free to remind me that. And if you see somebody dithering in the street, or faffing (I can’t tell the time so I have become a faffer), it is probably because they cannot remember, or because the world around them seems a little too fast.

How am I coping? Well, to be honest, for the first couple of weeks I wasn’t. I spent a lot of time worrying that I would forget something, or worrying that I would be unable to do a task, a walk, a social outing. But, after some inspiring words from Mike, I have learned to adjust. My brain is slow, yet I was trying to live as if it functioned normally. I was asking those around me to slow down, but I needed to slow down myself. It all amounts to effort. I can remember, it just requires a bit more effort. I can communicate, I just need to think, think real hard, before I speak. I can cook dinner, it just takes a little longer and requires a bit more planning. It is very easy to rely on others, to submit, but if I do that then my memory will get worse, and I will become lazy. Effort is the key. Increased effort brings increased reward. I’m beginning to understand that it is permissible to forget; a grocery, a day, a thought. That is acceptable to fail; the reaction to the failure is more important than the failure itself. I am so fortunate that I have had an opportunity to slow down, to experience what it is like to live with a poor memory, with poor concentration. To understand how difficult a large portion of society must find everyday life. Mike and our families have been amazing through this period; my revelation has come at their cost. I guess all I can do for them is to maintain this tolerance and relaxed attitude. Because my brain function is returning, the loss is only temporary, the worst has past. Others do not get that luxury. Let us hope that I can remember this experience.        

Oh, and just a little bit of science for those interested. What I now have is termed central nervous system (CNS) lymphoma. It is rare in Hodgkin’s patients, and different to primary CNS lymphoma because it did not start in the brain. The haematology team speculate that the cancerous Hodgkin’s cells have invaded the CNS via the bone, thus avoiding the blood brain barrier. The brain and nervous system have a protective barrier separating themselves from the blood. This barrier is pretty selective as to what it allows across. Most medications aren't permitted, nor my pesky Hodgkin's cells. It is also why meningitis is so bad; the immune cells can't get into the CNS to fight the infection. My cancerous cells were pretty much like El Chapo Guzmán tunneling under a Mexican prison wall. Fun times.  

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.