Category Archives: Paraprotein

Missing Milestones

Once upon an early diagnosis, I loved nothing more than recognising, in celebration or in defeat, a myeloma milestone. Back then, in what feels like a lifetime ago, everything related to my illness was new, scary and needed to be thoroughly documented or looked forward to. All my progress was marked this way; the first day of treatment, the end of a first cycle of treatment, my first birthday with myeloma, the first year with myeloma, the first stem cell transplant, the first relapse, even the second relapse and so on and so on. And so on. Three years ago, it was so easy to identify these milestones.  It was how I got through my then treatment, which I saw as something temporary, something that could be considered fleeting in the grand old scheme of life. Using the word ‘exciting’ to describe these things is a little perverse, but let us not forget that I was once a little pervert. 

I entered a world so alien to me, that the click, click clanging of an MRI scanner was exciting. Every time something changed, developed or I was sent somewhere new, I considered myself to be getting somewhere closer to the cancer nirvana. I was getting closer to remission and a life free of drugs. With each box I marked as complete, I was one step closer to the impossible something. 

I was wrong.

I was a novice and the novice in me found everything to be noteworthy. Even if I did not make an actual note of it, I would have acknowledged it to myself and marvelled in the exploration. Until my relapse, and even in the months after my relapse, I could have told anybody who asked, how many doses of chemotherapy I had had, right down to the number of Velcade injections poked into my stomach compared to the number I had stabbed into my arm. If I thought really hard, I might have even be able to have worked out how many blood tests I had had. All of it is a blur to me now. This blog acts as my record.

Time has passed. Lots of time.

Contrary to what I may have said at the time, in the early days of My Myeloma, I found it to be extraordinary. There was something fascinating to be discovered in everything it made me do and everything I planned for. Now, My Myeloma is no longer extraordinary to me, it is ordinary. It is my day and it is my night, and it has been that way for so long, that a blood test, a biopsy, a doctor’s appointment and even a stem cell transplant feels run of the mill. Fatigue, sore hands, an aching back, unformed stools, vomiting and cancelled plans are not significant. It’s my equivalent of a daily commute to work and then the 9-5 itself. 

I am not pessimistic.  I no longer track my progress as religiously as I once did, nor am I making plans for the future. I do not, not make plans because I do not think I have a future. I do not make plans because I do not know what my future will look like. If I try to envisage where I’ll be in February, for example, I have a dream of where I want to be, but the picture is fuzzy at best. That’s just February, anything beyond that is unfathomable.  Most the time, the picture is blank. Over time, I have concluded that not thinking about it and not planning for anything, preserves my sanity and reduces the size of the box entitled ‘Dashed Hopes’. 

In my post transplant world, recovery is slow. Recovery is not only slow, it is the Unknown. I could not pinpoint what I am recovering from nor for. I think and plan in terms of no more than a week. Any more than that can feel torturous.  I wake up, hope that that day is not going to be one that features vomit and I try to do as much as I can whilst factoring in the planned activity I have for the remaining seven days. Nothing more. Nothing less. That is my existence. 

I try not to think about how long I have been waiting for things to change or how much longer I have to wait for things to change. If I allowed my brain to think about it as often as it tried to, I would be stark raving mad. Given how much I already converse by song with the dog, it do not need anymore assistance in the road to madness.

In my days ruled by myeloma, but where it is the last thing I try to think about, imagine my surprise a month ago when I was told that I was now 100 days post transplant. I was not surprised it had been 100 days already; I was surprised that I had forgotten to mark such a significant milestone. 

If somebody had asked me what Day 100 would be like prior to my Day 0, I would have said I and the Medically Trained People would have a much better indication about my medical future than we do at present. I was told that at Day 100, my care would transfer back to UCH. Most importantly, when I sat down and signed all those papers, I was told that I would be taken off the Ciclosporin at Day 100, and then we would know how much, if any, Graft vs Host Disease I would get. In the last 100 days, this milestone, or the significance of this milestone has changed.

I don’t have the immediate answers I wanted. Instead, at Day 104, the Medically Trained People came up with a six week plan to slowly reduce my Ciclosporin to zero. GVHD may occur within the four weeks after that. I know this is progress, but I am pretty certain the tortoise just overtook me. Instead of being free, I have at least another six weeks of waiting (and willing) myself to become ill.

There is always the chance that I will not become ill when I come off ghastly smelling drug. If I do not break out in an unsightly rash or poop out my insides, then all of this waiting and all the treatment could be for very little. Imagine the weight of that anticipation; it’s an anti climax that hits me every day. 

On Day 105, some 27 days ago, I returned to the place where everybody knows my name for a clinic appointment. Not just any clinic appointment. It was the first appointment at UCH since treatment began at St Bart’s. That too should have been a milestone. The problem? I felt like I had nothing to tell them. There were so many questions, but no answer. Although I loved the familiarity of it all; the more comfortable seats and the smiling faces, it failed to be the milestone I wanted it to be.  It failed because we are not in the position for them to be my primary care makers again. Instead, it highlighted how slow my progress is. I get to go back again in February, by which time, I hope the  picture is in HD. 

Fifteen days ago, when I started this blog, I received a letter. A very nice letter.  The letter was a summary of the clinic  appointment at UCH on Day 105 and contained the results from a bone marrow biopsy I had on Day 103.  I could type out what the letter said, but it is 2015, I can show you instead:
 
Paraprotein not detected’

‘NO evidence of myeloma’

A milestone if ever there was one. Seven words that three years ago would have been my cancer nirvana.   A fortnight ago, they were words that make me smile. They were  words that made my support network squeal and cry. For a moment, I paused and felt relief.

The relief only last so long. Those seven words need to come with a footnote. A footnote that is so lengthy that I was tempted to not tell anybody about them.  I wasn’t sure if I could stand their excitement. 

Experience has taught me that it can come back, that’s one thing. My Myeloma has not shown me anything else. I have never had results as good as this before, but I have been in remission and it came back. I am still in recovery from the stem cell transplants and that means I still feel weak and my days are a struggle. My weakness is like a permananet cloud. Not having a paraprotein level or signs of myeloma, does not magically make the damage already done to my body go away.  Finally, I want GVHD. I need it. For long term success, for a better quality of life, I want GVHD. I long for it. Such is my want, I have spent the last four weeks monitoring my body to such an extent that I have become a hypochonriac. I am part excited, part suspicious of every stool, itch or back pain. 

It may surprise you, given my tone, but I know I am incredibly lucky. I do know that. I have one sibling and  against the odds, she was a perfect 10 for me. We matched when so many do not. I have almost completed my fun packed 2015, and so far, my treatment has gone as well as it could have. In fact, with just 13 days left of the Ciclosporin, I know that it could not have gone any better. My energy is increasing, not as fast as I would like, but faster than the Medically Trained People expected. Even with my energy, there are many a milestone that have occurred but gone unnoticed since I walked out of that hospital all those months ago. 

Despite this, despite all of this, despite all of these positive developments, I am tired. I am tired of my ordinary life. I want so much to be able to celebrate and acknowledge the good, but I cannot. The clarity I need could not come soon enough. I want to fast forward to a life not ruled by medical milestones. I do not know if that is even possible for me and that is terrifying.  That said, if it can happen, if it does happen, it really would be a milestone worth celebrating. 

EJB X 

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The Frenzy

I am well known to be able to work myself into quite the frenzy prior to my clinic appointments. My version of a frenzy anyway, most the time such a frenzy is something to be stewed upon in silence; that way I can pretend it is not a big deal. There are many factors that can heighten or lower my worries, but regardless of whatever they may be, there is always a level of anxiety before any appointment with a Medically Trained Person. It’s guaranteed and I believe that is why I require so much sleep after such an appointment.

Yesterday, my pre clinic appointment anxiety was particularly high. It had been brewing since last Friday and it is for this reason that I opted to wear a black top yesterday morning instead of the cream one I actually wanted to wear. Nobody needs to see back sweat through a silk cream blouse. I do not believe that is what a Marks and Spencer’s intended

The reasons for my worry, were as follows:

😁 I had a MRI scan on Tuesday, that I did not request, but was arranged because the Medically Trained People wished to see my progress since my relapse. In my mind, it is part of a conspiracy.

😁 Regarding the MRI scan, I was told at my last clinic appointment 28 days ago that I needed to have the scan before my next appointment so we could discuss my progress. Progress means change, at least I think it does.

😁 At my last clinic appointment, I was also told that my paraprotein had to get to 10 or below before I could have the referral to discuss my transplant options. After that appointment, the transplant would likely take place two months later. At that time, I thought my paraprotein level was 15. As in, years away from 10 or below.

😁 Last Friday, I found out that instead of plateauing, and in spite of being on reduced chemotherapy in October, my paraprotein level had fallen to 12 as of 23 October.

😁 Finding the letter with these results on my return from a trip to the hospital, made the excursion to UCLH for a simple blood test almost worthwhile. As the blood test also included a paraprotein test, it meant that there would be an up to date paraprotein level when I visited they hospital six days later, something that does not usually happen…

😁… Thus there was a chance, or I let myself believe that there was a chance that, that very result could be below 10. There was a chance that I could get that referral and by default, I would get some tangible put it in my diary progress.

Like any old pro, I spent most of my week trying not to think about what would be said at the appointment, whether it be good or bad, which in reality meant that I thought of mostly nothing else… Good and bad.

Upon arrival at the hospital yesterday, The phlebotomist took five tubes of blood instead of three. The conspiracy continues. As I checked in on the fourth floor before my urine sample, I noticed that there was a certain Medically Trained Person doing the clinic who we shall call, The Bad News Deliverer. 😁

As I sat patiently and waited for 95 minutes for my appointment, it became apparent that there were only two doctors running the clinic and the only one I knew was The Bad News Deliverer.

In a nutshell, the presence of The Bad News Deliverer + a long waiting time x everything else = 😁😁😁😁😁

I hid it well. I genuinely did, for The Bad News Deliverer noted when I sat down for my appointment that it is easy to forget the impact of myeloma on my life when I always come in for my appointments smiling.*

So, having monopolised my thoughts for much of the week, and I dare say the thoughts of the immediate Jones Clan, I can now say that the clinic appointment was anticlimactic. It was anticlimactic because the Bad News Deliverer did not deliver bad news, nor did he deliver any glimpse to the end of this limbo. What I got instead was a very normal clinic appointment, well apart from the start of it where one could have easily thought I was referring to myself in the egotistical third person. I was actually quoting somebody else talking about me whilst I was in my presence. It may also have come across as egotistical.

Emma just needed time to realise that that the behaviour and and comments from some people in her life were not acceptable and she needed to learn how to manage them; Emma uses CBT, well, she has developed her own version of CBT; Emma puts on a brave face, it is easy to forget that she has bad days’

Anyway, so yes, regarding my treatment I had nothing new to mention to mention. That’s a lie actually, I’m experiencing slight ‘bladder issues’, but I forgot to mention them because I was nervous. My bloods were fine and my paraprotein has reduced to nine.

Nine is less than 10!

I asked about the referral as discussed previously and the Bad News Deliverer said that he was not sure about it, so he would speak to the necessary colleagues and get back to me. I understand that this response is not his fault, but it was not one that provided me with the clarity I wanted, nor the one I thought I would get when I was once again in single figures, and thus my frustration will continue for at least another month.

Using my own version of CBT however, I have spent my time since the appointment seeing the bright side in what was discussed. Obviously, the main positive is that my pp continues to go down and for my body, I do not consider reductions of three to be a plateau. History says five cycles in, it’s actually good for me. Secondly, the MRI scan showed that there had been improvements since my previous scan and there was evidence that the radiotherapy had worked. I still have evidence of the disease, but I could have told you that every time I bend down, rollover, stand up or move. Lastly, I am telling myself something that I have learnt the hard way, it could have been worse and I should therefore be happy with that.

Yesterday then, I entered Cycle 6. Cycle 6 includes the full drug regime of which I have become accustomed. It’s not Groundhog Day; it’s progress. Yes, it is most definitely progress. At least, that is what it has to be.

EJB x

P.S. I am very aware that this whole Bad News Deliverer thing is irrational, and evidently not true. The person in question is a very nice human. I am working on this.

* Not blowing my own trumpet or nothing, but this came up because news got back to The Bad News Deliverer that the talk a fortnight ago with the Macmillan staff was well received. I’m playing down what he said because, like I said, I’m not one to blow my own trumpet. 🎺

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Ignorance is Bliss

I have been so focused on fixing my back pain, a pain which occasionally spreads to my neck and legs, that I have rarely thought about my paraprotein level. In addition, my current treatment is rather difficult, and now, three quarters of the way through my third cycle, there are still so many other, more immediate things to concern myself over. I have one clinic appointment every four weeks lasting about 15 minutes where I have the opportunity to discuss everything that I have experienced in the four weeks previous, and so, by the time it comes for me to ask how my paraprotein is doing, it has slipped my mind.

My neutrophil count for example has twice been at 0.85. A quick google search revealed that this means I am suffering from moderate neutropenia. As a consequence, I am now on weekly G-CSF injections to boast my immune system, and on daily watch for any changes to my body. It is a figure that comes from a Full Blood Count, which takes the Blood Taking People in the Cancer Centre 15 minutes to process. The paraprotein test takes a few days to return and thus, and result I get will always be out of date, and will almost always require a phone call if I wanted to know what it was.

At the start of Cycle 2, cyclophosphamide was added to my treatment cycle, which is something else that took up time key discussion time in my appointment. I also sensed during that appointment that if another form of chemotherapy was being added to my treatment, then I could not have done that well in Cycle 1. Of course, having thought about this in many of my alone hours, at that point, the Medically Trained People would not have had my results from the first treatment cycle. It did not stop me from wondering and worrying however, and that wondering and worrying led me to one conclusion; ignorance is bliss.

Three weeks ago at the end of Cycle 2, I was told by maybe my second favourite Medically Trained Person that my paraprotein had indeed reduced. It was at this point that I realised that I did not even know what I started my treatment with. On the 23 June, when I was told I had relapsed, it was 20 and I figured then that it did not matter what the figure was thereafter, all that mattered was that My Myeloma was active once more. By the time I started my treatment a week later, it had risen to 26. Halfway through my second cycle, the level had reduced to 18. When I was told this, I openly admitted that I had not thought about asking what the magic number was, and in response I was asked whether this was because I was afraid of the answer. That is a big question.

I think I was afraid of the answer. Not seeking the answer was a position I reached by default. If it was intentional, I did so subconsciously. I have experienced the excitement of a reducing paraprotein level followed by the plateau two times before, and logically, my previous experience is always in the back of my mind when I think about my illness and my future. The Medically Trained Person was pleased by my results and said that I could soon be at a partial response. Every part of my being wants to get to a partial response soon, but I fear history repeating itself. I do not need that sort of negativity, so what I had actually done, inadvertently, is not consider it all. I get up everyday, I take my drugs three times a day and I stay in the flat when I need to stay in the flat in order to save my energy. I do not want to spend the next however many months, crossing my fingers reliving the feeling of getting my A Level results, worst still, the disappointment of my GCSE results.

I learnt from my previous treatments that living for that result at the end of each cycle, is not mentally healthy. It does not ease my mind. It does not send me to my happy place. All it does is make me worry and occasionally it makes me cry. I need to keep my head high and that too needs to be a priority in these darkish days of twilight. Of course, as much as I do not want to live for the numbers, I want the number to reduce as much as it needs to ten times more. The weight I put on this means that I cannot overthink it. What will be will be, right?

There is a difference between my current stance on following my paraprotein and negativity. I do not sit at home all day and all night long thinking that my treatment will fail, I just try not to think about it at all. Myeloma dominates my life at the moment, but I do not want to live for it. When I think about the numbers, no matter what it is, I will always want it to be lower and that does little for me and little for those around me who have to manage my disappointment.

At this point, all I need to know is that my treatment is working, and the sacrifices I am making, the monotony of each day is worth it because I am actually getting somewhere. I will not ask for anymore because I know that it is not realistic for me to ask for it, despite the people around me wishing to know the scores on the doors so they can measure my progress.

The initial excitement I had when I found out that my paraprotein had reduced soon past, when I realised the dangerous, all so familiar path it would take me down. I know it is dangerous because I know that the Medically Trained a People know what my results were at the end of the second cycle, and once again, I am afraid to find out what it is. I need to carry on thinking that all of this is worth it, nothing can contradict that, even the truth.

EJB x

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I Give It A Year

Have you ever been to a wedding and attached an expiry date to the happy nuptials? If I had done this in my past, I would have almost always been wrong. Being wrong takes the guilt away from having the thoughts in the first place. Just over 11 months ago, I attached a multiple timescales to something that was not a wedding. The successful relationship between myeloma and my stem cell transplant, had me predicting the length of the union many times over. At my most positive, it would last so long that divorce was a fuzzy dot somewhere in my future. My worst nightmare was that it would not work, closely followed by it failing within a year of my transplant. My transplant was on 17 July 2013, and I have relapsed. There is no happy anniversary for me, just a fuzzy dot somewhere in my future where I may once again be as happy as I was a fortnight ago.

I am not ready for this yet. Last Thursday, when I was told that my paraprotein may have gone up, my overriding thought and one that I shared, was that I was not ready for it to come back yet. On Monday, when I received a phone call telling me that not only was my previous test correct in it’s finding of a measurable paraprotein, it had risen again to 20, I knew then that I still was not ready.

I feel like I put my life on hold. From August 2012 to November 2013, my life was on hold. I had a hold on my existence, to ensure that I did not burst. After November, when the wondrous ‘remission’ word was spoken , things did not return to my new normal overnight. It was hard, much harder than I thought or dreamed it to be. I had to teach myself how to exist in the real world all over again, with myeloma as my sidekick. I still had not perfected it, but from March, I would say that I finally started to enjoy trying to. I was in my infancy. I am not ready to let go of that yet. I have more to do and I have more to give. I cannot do these things when I am chowing down dexamethasone and having to treat shitting like an event again. One cannot seize the day when they are so heavily constipated that they vomit and soak their t-shirt in sweat that smells like oranges and onions.

I was two Velcade injections away from relative freedom, and even though I feared jinxing things, I was planning things. I was not just looking a month ahead. Hell, I have plans for October. October you gasp, positively crazy talk. Clearly. Closer than that, I had booked myself onto a weekly film course because I was able to retain more information than I have for a long time, I had more energy and most importantly, I thought it would be good for me to do something just for me. There are more things in between, but even if there was not a specific date in my diary, I looked forward to it, just because I could. Hell, I might have even had time to meet a gentleman fellow. I might have had time to grow somebody else’s egg in my belly. That all goes out the window now. Relapse means that at 30 years old, my life is on hold.

It’s just not long enough. I deserve more. I want more.

Of course, a relapse was an inevitability with myeloma and the treatment I had. I knew this, we all did. That does not take away my sadness at no longer being able to say to taxi drivers in an attempt to get a discount/free ride, ‘I have myeloma, a cancer, but I am currently in remission’. If they were lucky, or if I was talking to an acquaintance and delivering the Road Show, I might have added ‘I feel the best I could feel.’ It’s going to be a while before I can say that again. If I can say that again.

I had things to do. I have not even had time to write my blog about how I manage to hold down a full time job, how that makes me feel and the sacrifices I have had to make to do that. Nor have I blogged about how I was told off by the Medically Trained People for doing too much resulting in me reaching for the Oramorph. Apparently the increased and continuing pain was muscular, because My Myeloma was not active and thus there was not evidence to suggest something more sinister. That might not be the thinking now. The back and shoulder pain is funny, because the thinking was that I injured my shoulder because I forgot that I had myeloma and lifted a suitcase one too many times, when we all know that I should not lift anything. Maybe that is why this hurts so much, because I started to believe that I was more than my illness again. Well, for that sort of folly, myeloma has punched me in the face and stood on my nipple whilst wearing a stiletto heel.

I will find out tomorrow what my treatment is going to be. I’m pretty sure I have been here before. A friend yesterday said that given my previous experience with crappy myeloma, knowing what to expect is a benefit. She may be right of course, but right now I see fatigue, financial woes, steroid crashes, tin mouth, bruises, loneliness, frustration, constipation, insomnia and my bed. Lots and lots of time in my bed. I have previously crowed over escaping from my Bermuda Triangle; that was shortsighted.

The Support Network tell me that I am strong enough to do this again, even though I have not had enough time to replenish my good cylinder (yes that is making a comeback side by side with my paraprotein). I know that I will have to find the strength from somewhere, but finding the strength to exist and not live, when everybody else around you is living, is exhausting. It’s so, so exhausting. I do not want to lose myself in it. I do not know how to preserve me. I am not as strong as I was two years ago. Myeloma has already taken that away.

So then, here we are… Welcome to My Volume II. It’s going to be something, I just do not know what yet.

I suspect I am going to need more help this time around. And lipstick, lots and lots of lipstick.

πŸ’„πŸ’„πŸ’„

EJB x

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Trace

45, 36, 26, 29, 24, 23, 21, 20, 19, 18, 26, 21, 21, 20, 19, 8, 7, 5…

Since the 15 August 2012, when a junior Medically Trained Person told me I had an inaudible rare sort of paraprotein in blood, I have been plagued by it’s volume. For the first 12 months, it ruled my life and the monthly test result would determine my mood and resolve for the rest of the month. I lived and breathed that paraprotein level because so much of my life depended on it.

“We must get a partial response of 50% reduction.”

“It has to be below 20.”

“A complete response is 0, and it is unlikely you will get that on PADIMAC.”

“We think it has plateaued.”

“It’s 18, you can go to transplant.”

“I am afraid your paraprotein has increased and you will not be having your transplant. You will have another four months of treatment and then we will see”

“You are unlikely to have a level below 10 after your transplant.”

And so it went… I monitored it and everybody monitored it with me, using a plethora of emojis when it was good news and kisses when it was bad.

To preserve my stoicism, after so many dashed hopes, at some point last year, I told myself that I did not care what it was because I was tired of feeling like I was getting my A Level results every month. In the autumn, for the first time, my paraprotein level reached single figures and then I realised that I did care. The ability to live my life revolves around a figure I have no control over Once upon an infancy, I thought that reaching single figures would be easy, a piece of piss if you will, but for me, it quickly became evident that it would not be a piece of piss. It became out of my reach and the thought of not having a paraprotein level was not even a dream. It was a disappointment.

In recent months, I avoided asking what my paraprotein level was because I did not want to know that the life myeloma has carved out for me was over before I could take off the training wheels. I chose ignorance. Ignorance however, in case you wanted to try it, does come with an unhealthy amount of paranoia and self doubt; and that is how I have lived.

I had a doctor’s appointment recently. It was one of those situations where I had worked myself into silent hysterics prior, mostly because I was informed three days before it that I had to come in for an appointment and then as I waited, I saw The Senior Medically Trained Person and my palms started to sweat. At that moment, all I could think about was my paraprotein level. It had increased to be sure and I would be back to the drawing board.

That is not what happened.

In a matter of fact way, I was told that my current treatment was working because my bloods looked “very good”. Very good, I thought, I must be maintaining my status quo, and I satisfied with that despite struggling through my velcade injections every fortnight. Velcade and all it entails is the payoff. That said, a general comment was not sufficient for me, and seeing as I had made the effort to be half an hour late for my appointment, I used the opportunity to ask what my paraprotein level was and what do you know? I did not have one.

It did not and does not feel how I imagined it would. There are no fireworks in my head. Everyday continues to be an indescribable struggle full of sacrifices and walls, which yesterday’s day in bed would attest to. The overriding feeling I have and this latest development is relief, I feel like it buys me more time. More time to get used to the life myeloma has carved out for me.

Naturally, the Support Network were more enthusiastic about it than I. Emojis and kisses. They do not see that it changes nothing in terms of my daily routine, treatment and ability to see them. My favourite celebration was a fist bump accompanied by the acknowledgement that everyday will still be difficult.

That said, I did let myself smile. A few times.

πŸŽ‰πŸŽŠπŸŽ‰πŸŽˆπŸŽπŸŽ‰πŸŽŠπŸŽ†
xxxxxxxxxxxxxxxxxxxx

EJB x

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Give Me A Seven

It is rare for me to get excited about anything myeloma related these days. Gone is the time when I had targets, hopes and dreams. I still have a diluted version of the last two I suppose, I just liked the sentence structure. My dry wit, however, does, if one is reaching, offer some evidence towards the statement above that I really do not get excited about anything myeloma related. I have been there, done that and got the stem cell.

So, imagine my surprise this morning when I did get excited. I did jump up and down in my bedroom and I did</em scream out loud. As a result I did procrastinate so much that I had to get a taxi into town; that is my excuse and I am sticking to it.

In this morning’s post I was pleased to receive the note of my last doctor’s appointment informing me that my paraprotein level is no longer 8. My paraprotein is now 7. Seven. It didn’t go up.

I know there is not much in a point. It doesn’t change my circumstances. I have previously talked myself into thinking that a point up or a point down in the world of paraprotein means very little.

That said, for today, I’m going to let myself have a little bit more hope than I did yesterday, because recently, not even in my dreams was I hitting a seven.

A seven.

EJB x

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Single Figures

In my post transplant world, I have rarely thought about that pesky thing known as my paraprotein level. In the months prior to my transplant I rarely thought about that pesky thing known as my paraprotein level, for I was going to get the transplant anyway.

My blood is stubborn and so is the paraprotein and no matter what drugs I was given, it did not want to fall that significantly, oh no, it wanted to plateau. Plateau. If it was not plateauing it was increasing with aplomb. The bugger.

Way back when, I was told that my transplant would not bring me the remission I so wish for, and that the pesky thing known as paraprotein would remain. I am pleased the Medically Trained People told me this, for it meant that I could block out all the white noise to the contrary. I was told, that given my pre transplant level, to expect something around 10. And that is what I expected.

Today, I opened my post to find my post appointment letter and discovered that my paraprotein has indeed reduced. The miracle did not happen and it has not reduced to nothing. Damnation. Obviously. It has however, for the first time since we discovered I had one, a fact that is important to point out because there was indeed a period in my life where I did not have one, my paraprotein level has fallen to a single figure. I am so used to the template of the summary letters, that I thought the formatting was wrong, until I realised that there was missing a digit next to the word ‘paraprotein’.

My paraprotein is currently 8.

I do not know how I feel about this. At a guess, I would say that I am relieved that it has fallen below ten and my transplant achieved something, and on the other hand, I would say that I was disappointed that I did not get a miracle.

EJB x

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Little White Lies

It is a well documented fact, that I do not live on a schedule of my making. My body demands my current schedule, but it is not the schedule I envisaged for myself a year ago. The Medically Trained People have more control over my long term planning than I do. I should probably add, that I make the most of it, most days I have little acts of defiance, but I can only do that because I live day to day, and not week to week, month to month. For the last four months, if anybody were to ask me what I was doing or if I wanted to do something post July, I would not be able to answer. I would not be able to answer, because I did not know. I did not know where I would be. I still don’t.

I do, however, from last Friday, have a slightly better idea. It will, unfortunately, remain an idea for a few more weeks, because myeloma is not that clear cut. Myeloma is an inconsiderate bitch.

Previously, last week if my short term memory is being kind, I voiced my concerns about the Medically Trained People moving the goalposts, changing the date of my transplant by pushing it back further than the proposed six to seven weeks. Pushing it back, because that is what my experience told me was likely to happen. On Friday, I discovered that the goalposts had indeed been moved. The provisional date for my SCT is not in the six to seven week timescale, it is in fact, in a five week timescale, meaning that in three weeks time, I will, correction, may be packing my bags, giving EMan a wash, and going to stay in a magical place called The Cotton Rooms, before I am reunited with T13’s Angels. I am told that my holiday will be between three and four weeks, before I then get to have a longer holiday in a little island known as Bed.

Since Friday, the majority of people I have spoken to have said that going in to hospital a week or two weeks earlier than I had started to prepare myself for on 6 June, is not a significant issue. The sooner the better they say. I agree with this too, of course, for I categorically do not want to be in hospital after 14 August. Turn that coin around however, and the thing that I have been waiting for for six months, now seems to be happening too soon. Too, too soon.

I do not know if I am ready. I want to let my hair down (metaphorically) before I spend an estimated three months recovering. I want to do fun things. I want the opportunity to fill up my good cylinder before the bad cylinder becomes my main service provider. I have not learnt how to use my sewing machine yet for goodness sake. There isn’t really time for that in the next three weeks. Let us not forget that I still have another ten days on VDT/VTD, so the opportunity to have some mad, crazy fun is limited because I am a sleepy bum, who likes her bum and her sleep. Being a sleepy bum has not stopped me from planning to have some mad, crazy fun, but I fear it may prevent the execution of it. It may sound trivial, but I feel like I need to replenish that good cylinder, for I do not know how I can get through the coming months without it and when I will next get the opportunity fill it. There is just no time to and this not only frustrates me, it scares me. I feel like I have so many conflicting priorities, that I will worry and concentrate on them so I feel guilt free and not really have the time to just, be. Then, before I know it, it’ll be the 17 July and I’ll be missing my SMART TV. Then before I know that, it’ll be a week later and I will be shitting in a public toilet.

It is a Catch 22. I want to plan. Not only do I want to plan by filling up my good cylinder, if that is indeed possible, I want to prepare myself for my transplant and whatever that is going to entail. I am going to be incredibly poorly, I am going to lose my eyebrows and I am going to feel isolated and lonely in an environment that is not my own. I did this ahead of my first transplant date in March and I felt ready and that made its cancellation taste so much more bitter. I do not want to feel the way I felt on my Bad Day ever again. Unfortunately, I will not know, and presumably, neither will the Medically Trained People, for certain, if I am having my SCT until a week before I am due to have it. A week, by the way, is a conservative estimate. The reason for this uncertainty, is because they need a bone marrow biopsy and that is not happening until 3 July and the results take a good week to come back. For some reason, this biopsy could mean that I do not get a transplant and presumably, that my life span has reduced some more, so, that is something to look forward to. By the time I find out for certain whether I am to leave my flat for a prolonged period of time, it’ll be less than a week before I go into hospital. It is a Catch 22. Prepare and risk being disappointed. Do not prepare and be unprepared. This conundrum has been going round and round my head since Friday and I am in a pickle. I am trying to carry on as ‘normal’, but in everything I do, I see a countdown. Tick tock. Tick tock.

In this interim period, my strategy is Carry On As Normal With Added Extras. The ‘added extras’ are enjoyable things I happen to find myself doing around my treatment and need of sleep. It is not ideal, because the truth is, I do not really have time for ‘added extras’. I barely have time to see people. I try to see people, but it usually ends up with me over booking myself by attempting to be out of my flat for more than ten hours, feel pressured by myself, and then feeling incredibly tired and incapable of sleep. Attempting not to dwell on my latter point, I may have booked a ticket to the theatre and an exhibition and I may have had a family day out with the Cottams on Saturday, I have also planned a bake-athon in my kitchen, but I am doing these things just because I can and not because I need to.

My short term memory also tells me that I told you that I can sell anything to myself. I am selling myself this lie. It’s two lies really, the first lie is me preparing for my transplant without actually preparing for my transplant, and the second lie is me convincing myself that three events in three weeks makes fun. I lie however, so that I can carry on for the next two and a half weeks, and then, I guess, I will jump whatever bridge I find myself on then. After all, I have managed to get this far.

EJB x

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The Numbers

I am trying not to live for my paraprotein result. By live, I really mean, I am trying not to dwell on my paraprotein result. Bloody numbers.

I have spent months waiting for the result of that monthly test, where a few points up or down can have epic consequences. On the one hand it goes down and I got a Christmas with my family, on the other hand, it goes up and before you know, I am back watching my paraprotein level, sweating at the thought of it like I am finding out my A Level results all over again. The anxiety this causes cannot be good for me, maybe good for my bowel, but really, it isn’t good for anything else. The thing is, try as I might, I am always going to fixate on the result.

The Medically Trained People told me not to worry and think about it, but when my paraprotein level is the indicator they go by as to the success of my treatment, how could I not worry about it? Don’t worry about your paraprotein, but it does need to reduce by half for you to go to transplant. Okay, sure thing, now just excuse me, whilst I remove this elephant from the room.

In this area, I want to be a medical marvel. I don’t want to be known as the young lady who got myeloma, I want to be known as the young lady who got myeloma and responded astoundingly well to her drugs and was cured. Alas, that is not a test I can study for. If only I could. My body does what it wants regardless of what the best thing for me is and intellect has no weighting here.

I’ve been pretending I am indifferent to the results, mostly because failure scares me. I failed once before and now, I just see the stubborn figure as a big fat major. Every time I think about my paraprotein level, I think about failure, my mind goes into a spiral with thoughts that do not need to be repeated here. Bad thoughts.

The issue I also have, is that I don’t know what is a good or bad result. I have already been through this once before, so I know that any improvement (see what I did there, positivity)is going to be slight. As much as I would love to fall asleep, have my blood taken and then three days later find out that I have had a reduction of 15, I know it is not going to happen. My paraprotein level takes things slowly, like my erm… metabolism. So, I have to take any improvement as a good sign, as hard as it is for me to get excited about a point here or there. I don’t get excited about it anymore, because even if it goes down, it is still there. I get my exam anxiety pre-results because there is always going to be a part of me that wants to be the medical marvel. I cannot stop myself thinking that, thus anything that is not that, is a big fat letdown, even if it is a move in the right direction.

So, with that in mind, last Friday I found out that my paraprotein level had reduced by a measly three during my first cycle to 23. I am not excited about it.

EJB x

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The Bad Day

Yesterday was a bad day. It was probably The Bad Day. The thing with myeloma, is that they’ll be more Bad Days. I realised that properly yesterday.

I like to think that I am stoic and I deal with My Myeloma as positively as I can. The sad truth is, that on a day like yesterday, even the strongest of strong bad asses are going to fold. I folded. I guess, as the cliche goes, it’s the getting up again that matters. I didn’t get up yesterday. I have since I started this journey become a firm believer in letting it out. And boy, did I let it out yesterday. There is no use pretending that I didn’t. I did. My emotions yesterday were real and they played out something like this:

Upon hearing my dreaded news, I believe my self preservation mode kicked in and all I could think of was to not cry in front of the doctor or nurse. Sure, that made it quite difficult to process what I was being told and you know… concentrate. I didn’t ask why my mouth and nose were swabbed, I didn’t ask how bad my increase was. Is it actually just a step away from donating my body to medical science? I didn’t ask. I just had to get out of the room and I didn’t want anybody to ask me how I was. I wanted to go home.

That did not happen though. I had to pee into a pot and make an appointment for next week. I got the peeing out the way, but making the appointment was near impossible. I did not have the energy to overcompensate my tears with a joke. I just whispered to the receptionist as she dilly dallied over her computer. Rather nicely, my transplant nurse waited for me to do this to check that I was okay. I wasn’t. She got the lift down with me and again, all I could think of was ‘don’t cry’ and ‘don’t ask me any questions’. She did though and I think from that point on, I could not help but enter the longest crying session I can ever remember experiencing.

Of course, I could not go home straight away. Life is not that simple. I had to pick up some drugs from the pharmacy. I was told that it would be 30 minutes. It wasn’t. It took over an hour and that was an hour of me sitting on the ground floor by the Garden Lift crying, hoping that nobody I knew saw me. Again, that did not happen either. It would be inappropriate to rank my doctors by preference, they are all Medically Trained People after all, but my least favourite doctor walked by twice as I sat there blowing my nose on the lining of my coat with mascara running down my face (FYI, I strongly suspect given the time between sightings, he was having a crafty fag, Medically Trained People should know better). My favourite Macmillan lady also saw me and with her I didn’t try to hide it. I just let it out. More tears and more snot. Consequentially, my counsellor called me later in the day to arrange an appointment. That’s where your charity money goes folks.

If waiting wasn’t bad enough, I had to tell The Support Network. I have a vague recollection of saying to a Medically Trained Person, I do not know who of course, ‘what am I going to tell people?’. Apart from Mamma Jones and Big Sister, this was done via the group text message. I am a coward. The responses were heinous, for each text I received in reply, I cried some more. It’s not just about me. It would appear that people do care and they do love me. It was too much to take. Yoda was told not to come to the hospital, because I think at that point, if I had seen somebody from my actual life, I would have had no option but to roll around on the floor and/or to destroy the biscuit display in Costa whilst spitting expletives that rhyme with ducking hunts. I needed to be alone and I needed to process.

On getting home, via taxi, because the thought of waiting any longer in that building for my transport made me want to rip out my intestines, I sobbed. Actually, I howled. I walked down to my kitchen, opened my plate cupboard and thought that smashing its contents was an awesome idea. I then remembered that I hate cleaning and as Middlesborough tells me every time she comes to the flat, I do not have enough plates in the first place. So, I vetoed the smashing and instead, made my way to my bed and cried some more and reached for the tissues.

I tried to stop looking at my phone. I am probably still not answering enough of my calls because yesterday I did not know what to say and today, I want to forget about it. My favourite comment yesterday, which I received from several quarters was ‘it is fucking shit’. ‘Sorry’ worked to some extend, but I wanted venom. Only venom was going to stop the tears yesterday.

After a few hours more of crying, I moved on to the paranoia. Why was everybody being so nice to me? Why were there so many sympathetic faces? Why did they say ‘if’ I have my transplant? Why did the doctor think it was a good idea for a family member to come next week? The questions went on and on and on, and yesterday, the only answer I could come up with, was ‘because I am going to die’. And then I cried some more.

And then, I thought I better keep my evening plans because the alternative was to carry on crying alone on my bed and I did not have enough Kleenex. So, I went out and what do you know? I cried some more and had to wipe my nose on yet another coat (black cape if you are interested).

Getting to sleep yesterday however, was surprisingly easy. I was exhausted. The shock had taken most my energy away from me and then the tears took what was left.

Not everyday is a barrel of laughs in Myelomaville. I felt loved and alone all at the same time. I also just wanted the day to end.

As for today? I got out of bed.

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EJB x

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