858 state

You know the facts, but you haven't got a clue about me
I Hang Suspended - Boo Radleys

Check up ... Hb =11.7 ... Neutros = 1.2 ... FLC = 55

After November's results, with my light chain scores creeping slowly tediously upwards, I wrote: "Here's hoping it is still less than 80, come January". So I am ecstatic that today's result, at 55, is the lowest score I have ever had. That's the good news.

But there's always a but. Today, it's my haemoglobin. If ">14.2"="normal" and "<8.0"="immediate transfusions", then 11.7 equals cause for concern, and an explanation of why I have been feeling so wasted. I am significantly anaemic, again. Haemoglobin is the vehicle for transporting oxygen round the body. Less Hb means less oxygen, pure and simple. In a way, I'm not so surprised, as I've been getting fatigue problems the last few weeks.

While my light chains remain low, this is a bit of a mystery. The consultant invites me to ask questions, but cheerfully adds
"Of course I don't have many answers"
It could theoretically mean my myeloma is back, but has stopped secreting light chains. But that is statistically unlikely, and I think I'd feel it in my bones by now if that was going on. So I'm not too worried.

Still, it means the consultant has booked me in for a massive array of blood tests in a few weeks time, with the promise that if my Hb drops below 11, I'll have to have a BoMB. If ever there was an incentive to eat lots of spinach, this is it. *

I'm hopeful that, having been completely side-swiped by the flu-cold bug that has been doing the rounds (two and a half weeks feeling shit), my blood counts are simply down because I'm run down. Interestingly, the last time my Hb dipped was in  June, when I was last laid up with a bug. My subjective experience is certainly that infections now knock me off my feet like they never did before, and leave a trail of fatigue behind them. Let's hope it is that, because the alternative would be worse.

As a result of feeling so ill, I didn't post in December, when I passed a peculiar milestone... my final zometa treatment. Zometa helps strengthen bones, and is also known to suppress myeloma. However, with prolonged treatment comes increasing risk of osteonecrosis of the jaw. As with all things myeloma, it is a judgement made on the basis of insufficient information, but my docs reckon the risk outweighs the benefit somewhere beyond 2 years of treatment. And so December's dose was my last.

It feels odd walking to the chemo unit "for the last time". Not really the last time - we all know I will be back - but not now for an indefinite, indeterminate, unspecified time to come. I count up the time since my first visit. 858 days have elapsed.

Of course, I haven't spent all of those 858 days in hospital. But I have had:
60 (or thereabouts) visits to the chemotherapy unit (usually at least half a day, sometimes a whole one)
25 (or so) appointments in the haematology clinic (anything from 1 hour to 4)
21 days in isolation after my SCT
10 trips to the physio
6 sessions in the post-transplant rehab gym
4 bone marrow biopsies
3 MRIs
3 days waiting in the ward for inconclusive tests after getting a fever
2 sets of nuclear medicine scans (for bones and kidneys)
2 sets of PET/CAT scans
2 trips to A&E for suspected fractures
1 day in apherisis
1 night in, and a morning in the neurosurgery theatre
Appointments with the cardiologist, lung dept and the university dentist
So many x-rays I lost count

Innumerable blood tests

I suspect I've spent more than 15% of my waking life - 1 day per week - these last two and a half years, in hospital. Of course, most of that time was condensed around my front line treatment and my SCT. It's really only been a day a month, during the last year. But leaving the chemo unit does feel like the end of a chapter. My last treatment experience is a total shambles. I arrive at 9am, have my blood taken at 9:30, but am still waiting for my treatment at 1:00. I won't miss that.

If it weren't for the anaemia, I'd be down to one appointment every second month, for now. I sincerely hope that nothing shows up in my forthcoming tests, in which case I can finally bask in my low light chains, and stop spending so much money in the hospital coffee shop.

* Actually, my anaemia is macrocytic, not microcytic, so low iron is probably not the cause. You can nerd yourself out reading up on those if you want. If you do, you'll see that macrocytic anaemia can be caused by vitamin B12 deficiency. But my consultant warned me off going bonkers on B12 supplements. There's enough confusion in my blood without chucking things in at random.

Chalky

[Instrumental]
Calcium - The Future Sound of London *

Calcium = 2.16. Apparently that does matter. Who knew.

In the melee of figures that go with having regular blood tests, I've learnt to focus on the few that really matter. Normally, that means the indicators of blood cell types, and of course indicators of myeloma. Every now and then, my attention is drawn to something else (I had a crash course in liver function indicators, many moons ago.) One number I have consistently ignored has been my calcium level. Active myeloma can cause hypercalcemia (too much calcium in the blood). But my calcium has been consistently low (hypocalcemia). This is almost certainly a consequence of the bone strengthening drugs I'm still on (though next month may be my last, with a bit of luck).

Every time I go for treatment they tell me my calcium level is low, but treat me anyway. I then take calcium supplements for a few days, before forgetting all about it for another month.

Since the summer, I have been having consistent abdominal muscle pain. This has been a site of much unpleasantness in the early days (spasms due to vertebrae damage in the beginning, and then sporadic flare ups during my initial treatment), so its recurrence has been disconcerting as well as painful (though nothing like the pain of old, when I was unable to stand up without searing agony).

I tried to put the "what if..."s to the back of my mind and focus on addressing the symptoms. After a lot of (yellow) English mustard (turmeric, which is yellow, is good for muscle spasms - among many other things, so English is better than less-yellow-French or more-added-colouring-American!), some amitriptyline** (short term relief), and a bit of stretching exercise (if anything, this made it worse), I seem to have settled on an answer... increased calcium. I've been getting through a lot of chalky calchews.

Sure enough, today's test results shows higher calcium levels than ever - actually in the normal range - and at the same time my muscle pain has gone away. The nurse today agrees the two could easily be connected. Not that anyone volunteered this fact to me until I'd worked it out for myself. Apparently - she fills in the science bit for me - mineral imbalances between in-cell and out-of-cell levels can lead to pressure, and so pain, across stressed muscle areas... so for me to experience it in my abdomen is not really that surprising.

Having myeloma is a bit like switching the body's blood machine from automatic to manual - things which used to auto-correct themselves now have to be actively managed. What a pain. Or not a pain, actually, right now.

* I was unsure whether I am allowed to put an instrumental in as my lyric quote. And then I remembered it is my blog. So I am the arbiter of the rules, as well as good taste, in this space. I can see it will pose a little problem for those of you who don't know it... So here's a link to listen on youtube. And of course, it is today's contribution to RadioM. for those on spotify.  Seminal early 90s ambient techno. And the first album I discovered while at university.

** Google's spellchecker doesn't recognise the word "amitriptyline" and wanted to correct it to "pantyliner", but I haven't tried those, so I can't tell you if they are any good for my muscle cramps, I'm afraid.

Bucolia

Then off goes the bell ringing through my head. Signifies that all's been said
The Bell - Villagers

Check up: ... Haemoglobin 11.9 ... Neutrophils 1.87 ... Platelets 184 ...

My test results from Monday much as last month. No plans to find out my FLCs this month, so just presuming my myeloma continues dormant.

Sitting in the hospital this week for my bone drugs, I can't say I've missed it. Each visit I notice fresh changes. The corridors have been recently refurbished. More than half of the staff in the chemo unit have come and gone. Being here is very much standing still, for me. Standing still is a lot better than going backwards, or downhill, of course. Nevertheless, losing more than half a day every month, sitting in the chemo unit, is a tangible drag. Even with my headphones on I can't help overhearing unwelcome snippets of other people's woes. She had an adverse reaction to velcade. He waits endlessly for blood results. Her chemo must be attenuated. He needs assistance to walk to his seat. And then there's me. Healthy, happy, and incurable. Fiercely independent, yet dependent on endless tests and therapies. There are charities - I can't ignore it because there's a poster staring me in the face to remind me about it - set up to "support" me and "help make life better" for me.

The bone drugs, this week, leave me feeling a bit shabby for 24 hours - for the first time in ages, I retire to bed. And then I have yet another hospital appointment - this time with a physio who is going to try and get my spine fit for running again. This is a great goal - but what a drag to have to keep working on my back day in, day out, probably for ever.

Sitting in the hospital makes me think about my progress. If you'd asked me, 15 months ago, where I'd be now (or even if you hadn't asked, because it was almost a fixation for me) I'd have painted a picture of completing my PGCE (which I have not) and then backpacking the children across Asia, before setting up home in New Zealand. A carefree existence like that is simply incompatible with myeloma. It's a tricky thing for me to even think about now, and Marisa and I don't discuss it much. A year ago we had photos up on the wall of our kitchen of our "destination". For a while they were simultaneously difficult to look at and impossible to take down. They are long gone now, replaced with pictures of happy children and holidays. It's a kind of bereavement, I suppose. We are grieving for a life that never was.

Instead, where am I? On holiday, if at all possible. After the summer en famille, kicking back in France, we just took a luxurious, romantic, child-free, weekend in Venice. We're off to Turkey next, for some autumn sun in a couple of weeks and (barring something awful happening in the meantime) planning a jaunt round The Philippines in six months: Marisa and me, our wonderful children, and some of our dearest friends. In between, I'm working, but also making time to do a share of our child care.

Oh... And we recently got the keys to a little place in Sussex, and are throwing ourselves into rural weekends. A beautiful view. A wood burning stove. Easy access to the seaside, to country walks. We've been blackberrying, shell collecting, castle climbing, bird watching. Bliss.

I feel a little uncomfortable with the new self image. Holidays in the south of France? A lifestyle job? (To use the term with which an old boss used to disparage anyone who prioritised family instead of graft.) A second home? Yikes. On the other hand I defy anyone to look at Marisa and me and even think - let alone vocalise - anything along the lines of "it's alright for some". The rest of my immune system may be compromised, but I'm largely immune to feeling guilty, any more.

Many people have warned me that it can be the time when intense treatment has ended, when life returns to "normal", which can be the hardest on the mind. Seems ungrateful really - I have much to be thankful for, after all. But when I was ill I had a clear focus - getting well. Now I keep asking myself the purpose of being healthy. Am I making the most of it? Am I being responsible, but not too earnest? Am I enjoying myself enough, but not being too frivolous? Where's the optimum balance?

While I went through the intense period of my treatment I could whinge to my heart's content about bone pain, nausea and fatigue. After months of being concerned on our behalf, it's nice for people (that's you) not to have to worry about us. So I'm reluctant to inflict my existential uncertainties on you. (I may need all your empathies again, one day... can't afford to give you compassion fatigue!) Easier, therefore, to write it. (And now I have.)

No news is

Courage to carry on. I’ve got to be oh so strong. ‘Cause it’s a long way home
Home - Rudimental

Check up: ... Haemoglobin 11.9 ... Neutrophils 2.04 ... Platelets 208 ... Kappa FLCs ?? ...

I spent much of August ignoring – not even really thinking about – my myeloma. Fatigue snared me just once, which is remarkable given the amount of cycling, canoeing and swimming I did. Not to mention the long drives, hot weather, late nights (courtesy of good friends and French wine) and early mornings (courtesy of Lyndon).

My myeloma symptoms, as I told my doc today, are largely non-existent right now. My back is still improving, though it does require regular effort on my part. The aches get less, the mobility gets more. But I'm certain it is mostly a musculoskeletal consequence of all those fractures, as opposed to being directly attributable to myeloma, any more. I do think there's a residual amount of myeloma pain in my hips (I guess that's what it is, since it doesn't seem to be going anywhere). The doc asks me about it and I explain. When I go on to say that I'm taking no painkillers, I can practically see him scratching out the notes he's been taking. Myeloma pain at a level that doesn't need medicating? Doesn't count!

It would be nice if I could completely ignore myeloma. But that is something I'm not allowed to do. I had a conversation with someone a few days ago, who I'd only just met. At the end of my sorry tale (I don't often choose to tell it, face to face, but it sort of came up in conversation) she fished hopefully for an "it's alright now" epilogue from me. Well, it isn't aleffingright. I've still got it. It still impacts my life. In very tangible ways now, my life – all our lives – are different from how they would have been without myeloma. Aside from the massive interruption while I was ill, we are making different choices, different plans, from what we would otherwise have done. Different doesn't mean any less good, but it does mean I can see the imprint of myeloma all around me.

I had my bone strengthening treatment on Monday. Things were going very slowly, and I had a school pick-up to get to. A year ago, I wouldn't have dared to unplug myself from the drip. Now, I figure I can make these decisions for myself . (I should point out that I'd had all my drugs, it was just running saline at the time.) I did give the nurse the opportunity to remove my canula for me, though to be honest, I'd do that myself too, if I needed to. I feel like an old lag in the chemo unit these days.

Clinic this morning. The dreaded numbers. The monthly tick-tock of living with myeloma. I haven't spent the week worrying about it, but it is always a distraction, nonetheless, in the days between them taking the blood and me getting the result. My blood counts are all moving in the right direction. Nearly normal white blood counts, and less anaemic. But I knew that already. What I am trying not to fixate on, this morning, is the magic number that is my free light chains, the pollution that my myeloma deposits in my blood and which tells me whether my myeloma is on the move. Not a healthy fixation. So maybe it is a good thing, when I get there, to discover my light chain result from this week isn't up on the system. Right now I don't know my light chain score. Unease, for a moment, and then calm. After all, you probably don't know your light chain score either, and that's OK, isn't it?

I feel good, therefore I am good. I just need to keep believing that my myeloma is dormant, and I can get on with my life. The doc clearly thinks so – he's told me not to come back for another 2 months. Maybe by then I'll have forgotten all about it. (Ha, ha.)

You know I said it's true. I can feel the love. Can you feel it too?
Feel The Love - Rudimental

99...100

Don't let the walls cave in on you. You get what you give. That much is true
Where's Your Head At - Basement Jaxx

Day 99 : ... Haemoglobin 11.1 ... Neutrophils 3.1 ... Platelets 110 ... Kappa FLCs 70 ... Plasma in bone marrow 2% ...

My fortieth birthday begins with a quick trip to the hospital for my "day 100 review".
"How are you?" asks the doc.
"You tell me" says I.

For those of you not fluent in myeloma measures, the numbers above translate as follows: My light chains are more than 95% reduced from when I began treatment, and have been stable for 2 months. And the amount of plasma in my bone marrow is <5% (it was >30% when I was diagnosed - i.e. a third of my bone marrow was cancer). These two factors between them, mean my response qualifies as complete remission.

CR. CR. CR. Hurrah!

It's been a long time coming.

And the other counts are all OK. My immune system is back to full strength and although I'm still anaemic, there's time for that to recover yet too.

A good birthday present, then.

I also nipped into the chemo unit for my monthly zometa (bisphosphonates) to strengthen my bones. I've had a few months off, due to my transplant. I'm glad to be back on. I'm also glad to be in the chemo unit as merely an occasional visitor, rather than a regular.

From here on I will be having monthly zometa treatments, and monthly light chain tests. And we'll wait and see what happens. Hopefully, nothing.