TimeBoMB

Mother, do you think they’ll drop the bomb? Mother, do you think they’ll like this song? Mother, do you think they’ll try to break my balls?Mother – Pink FloydBoMB timeThought you’d be as delighted as I am to know I’m going to have a bone mar…

Bad DJ

I got two turntables and a microphone.Where It’s At – BeckCheckup … KFLC = 698 … κ/λ = 116 … Hb = 10.2 … Neutros = 1.60 … Lyndon got a set of digital decks for Christmas. They’re very cool, though it will take him – and me – a while to g…

A plan for 2018

You understand, I got a plan for us. I bet you didn’t know that I was dangerousDangerous – Big DataCheckup … KFLC = 676 … κ/λ = 122 … Hb = 11.6 … Neutros = 1.16 …Today, as I expected, I’m told that my next appointment is probably the sta…

Sunny intervals

Hey sunshine, I haven’t seen you in a long time. Why don’t you show your face and bend my mind?Cloudy – Simon & GarfunkelCheckup … KFLC = 641 … κ/λ = 95 … Hb = 11.2 …I’ve hesitated to post this. It’s 2 weeks now since my last appo…

Pico

I’ve never felt so good. I’ve never felt so strong. Nothing can stop us now
Nothing Can Stop Us Now – Saint Etienne

Checkup … KFLC = 550 … Hb = 10.6 … κ/λ = 81 …

So this weeks instalment is thus:

My light chains have opted to split the difference – 2 more tests both giving results almost precisely in between the previous high and last month’s dramatic drop. What that means is not obvious. The hospital Dr sends my GP a letter after each appointment, and I receive a copy. Last month he described me as a “difficult case”, which I think means it is unclear how we proceed, rather than that I am a pain in the arse.

I’m not quite triggering any single ‘reason to treat’ criterion. My κ/λ ratio, which had soared well over the 100 threshold, is back down. And I’m not reporting any symptoms. Indeed, I’ve just been on a walking holiday in the Spanish Picos de Europa mountains, so I must be in reasonable shape. I did find myself puffing on the uphills, and that may reflect the most significant bad omen for now, which is my relentless anaemia.

My haemoglobin level is moving from normal-for-me (which would not be normal for you), downwards to not-good-for-anyone. If it continues to fall, it will become a reason to treat in its own right. Being consistently significantly anaemic is not much fun. (That’s the boundary of my Saint Etienne infused positivity. That and achy hips.)

So, we wait on more and frequent blood tests, and another MRI. Back in the MRI machine, for a whole body scan. The outcome of which can be compared to the one I had last December. This really is the full English breakfast of scans – neck clamp, head clamp, weights and sandbags everywhere. Contrast dye injection, prolonged breath holding, the lot. And so so noisy. Still, better this time without the blocked-nose-sore-throat cold, which made the previous experience that much worse.

I was also booked in for a bone marrow biopsy but the consultant decided that having a BoMB right now is not really worth it. (I can save my anticipation for the ones that will almost certainly be required for the clinical trial I will likely find myself on at some point soon enough.) In itself, cancelling that appointment is something of a result.

In other news, I’ve been heartened to read several articles about a new treatment called “CAR T-cell therapy”. It involves the patient’s own immune cells being harvested, modified to attack the cancer cells, and then re-infused. There have been encouraging trials on myeloma patients, and the process has just been licensed to treat one type of leukaemia. It is quite possibly going to become a functional cure for some (many?) people. (Putting the Car-T before the hearse?) I just need to hang on long enough. In that context, my endlessly dithery disease is exactly the right kind to have. Long may the dithering continue.

Crepuscular

Infinite sunrise (Blelelele-lelelele-leleleleh. Aha ha ha. Ah ha ha. Ooh yeah.)
Perpetual Dawn – The Orb

Checkup … KFLC = 464 … Hb = 11.2 … Neutros = 1.1 … κ/λ = 82 …

Every myeloma journey is different. Mine appears to be quite considerably a mind game. I walk down to clinic having steeled myself for the inevitability of restarting treatment, and concerned primarily with when it will begin and what protocol I’ll be on.

To be told that my light chains have dropped (by nearly a third) is – to put it mildly – a surprise. This means the treatment conversation can wait a little longer, my κ/λ having dropped well below the 100 threshold. The registrar doesn’t have anything to offer on the whys and how-comes, and I’m beyond asking. It just is.

I have no energy, either, for guessing the next instalment. Maybe this result is a blip and next month I’ll be preparing for chemo. Maybe the last few months were the blip and my light chains will go up slowly again from here. Maybe this is a new trend and my light chains will fall further. No-one can know, and I don’t much care to pretend to have any inkling. We’ll find out, soon enough.

The doc signs me up for another MRI and a BoMB in a couple of weeks. (So that’s something to look forward to!) I’ve been feeling intermittently well and not, of late. I’m certain the myeloma is lurking about, but if it chooses to keep its distance, I’m OK with that.

“Sunrise with phone mast” (view from my bedroom window)

My myeloma is challenging to comprehend and process. It leaves me permanently on edge, perpetually a month away from treatment. I’ve been relapsing now for 2 whole years. But I’m not complaining. It’s better than some of the alternatives. With absolute horror I discovered, a few weeks ago, that one of my friends, whose myeloma journey started simultaneously with mine, and who I have always considered to be my ‘myeloma twin’, has died. I’m horrified for her: she was younger than me; and at the end she endured plasma cell leukaemia – a tough way to go. And I’m horrified as much for myself; one can’t have a much more intrusive reminder of one’s own mortality. I will miss her companionship. I hope her family and friends can find some peace.

After clinic, we drive to Sussex. I’m just unloading our bags in the rain when a car careens greasily down the mud flecked lane, mounts the verge opposite me, rolls onto its roof and then cartwheels end over end down the hill. It lands on its wheels, but the roof is stove in, and much of the contents of the car – papers, CDs – are strewn across the road among the smashed glass, light fittings and bumpers. I walk towards the steaming wreck, with a sick feeling in my stomach of what I’m about to witness and have to deal with. And then – improbably – the door opens, and the driver just steps out. He is very dazed, and has a lot of superficial lacerations, but he is basically unhurt. As he walks toward me he casually picks his phone up from where it is lying in the road. I take him into our house, to sit down, stop the bleeding, and wait for police and paramedics. It is chaotic: our luggage is all unpacked and underfoot; there’s blood on the floor and on the buttons of the telephone. Our very new puppy is somewhat awed by all the high vis jackets of the procession of visitors who proceed to walk in, accompanied by plenty of rain and mud. But as the driver sits and calm returns, I’m reminded that life always has space for miracles (and of the amazing safety specification of modern cars).

I hope he enjoys waking the following morning as much as I do.

Psychophysical

Destiny is calling me. Open up my eager eyesMr Brightside – The KillersI decided this week’s update should come before my clinic appointment. After all, 99.8% of my life occurs between appointments. I live life merely reaching from one appointment…