Off we went to our Blood Clinic appointment today and as Ruth commented not so long ago – ‘Zeros are best’. Okay may be not in relation to your bank balance or wages unless there is a lot of them and a one in front but certainly in relation to a your paraprotein (the cack produced instead of antibodies by the myeloma – hey I don’t claim to be a medical encyclopaedia) – ‘zeros are best’. I know I’ve read that the PP is not always the best indicator but from a psychological point – ‘zeros are best’. Lovely big fat round zeros! Well somewhere in the last 10 weeks it would appear that I’ve mislaid mine. I don’t know where exactly, it could have fallen out of my pocket while reaching for poop scoop bags whilst walking Bud. I realise now that may be that wasn’t such a good place to put it. Or I could have inadvertently stuffed it into a Myeloma Buddy (thought I better state Myeloma there in case someone alerted PETA and they confiscated Bud). So if you’ve got a Buddy in the last 10 weeks that appears to have a funny zero shaped bulge I’d be grateful if you could extract it and send it back – I’ll gladly pay postage.
I only thought last night ‘I can’t take it for granted it’s going to be zero again, what if it’s not?’ and I thought back to myself ‘Well, the results are already sitting there on the computer unless worry can hack the system there’s no point fretting.’
So the PP isn’t a lovely zero however it also isn’t yet a number, not even a teeny tiny one. It’s ‘not sufficiently detectable to quantify’.
Now apparently it’s not something the doc is concerned about. It was a new, to us anyway, doctor but he seemed very reliable. They ‘treat the patient as a whole and not the number’ and looking at my other figures there’s nothing to worry about. And really at the moment I’m not THAT worried (note to self – remember I said that when I wake up first thing in the morning and have an appointment flashback).
My other results were
HB – 11.8
Platelets – 202 (okay yes I originally stated WBC as 202)
Neutrophils – oops. I didn’t write that down (4 seems to ring a bell but don’t quote me on it!)
IgA – 1.44
So looking at the whole picture – my back is easier, my wrist is about the same but doesn’t bother me as much because I’ve been taking regular pain medication (if it does get worse I can be referred to a rheumatologist) and generally I feel well. Oh, and I liked this doctor so much and it had nothing at all to do with him saying it was ‘good to gain weight after SCT that’s what they like to see’!
And on enquiring it turns I have IgA Lambda. Hey I know last minute Larry, but we initially had a consultant who was very ‘Just take the tablets’ old school, and then I went potty on the Dex, so we are a bit behind on relevant info but we’re getting there. B’s still about two appointments behind me. Last time he asked about the Zometa and this time about the IgA. With this and turning up on the wrong day for appointments it’s no wonder they remember us.
After the appointment we went for Zometa (bone protection) where B regaled a chap in the waiting area with tales of my driving woes – turned out the chap had once been a driving instructor and fully sympathised with B!
We then went for lunch at the Tavern & Co Mexican – where I followed Sean Murray’s advice (point 9) and had the medicinal Nachos and the non medicinal Texan fries.
After lunch we went for a brief shufty round the shops where we saw a chair that was so comfy for me it was unbelievable as I can still get comfy on our settee for a short time and even then still get up and walk off like I’m 103. The only thing, well things, were – it was quite expensive, it was reasonably unattractive, B didn’t find the complementary settee comfy, it wouldn’t go on its own with the current settee/decor. B suggested we get it for my sewing room – We’re thinking about it!
We got home to find Bud had had a chew of the kitchen door frame again, I had applied more Deep Heat this morning and left the tube on a shelf. When I applied some more to the door frame after we’d tidied up it turned out that the cream no longer distributes just from the correct distribution point but also from a large tooth hole half way along!
Oh, and we got a cheap camera!
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I think I got your zero in my Buddy but it fell out and went on the end of my PP level. Your quite welcome to have all of mine if your missing it so much :p
You can store it with your blue peter badge 😀
Whatever kind of MM it is that FL has (and we don’t actually know, to be honest), he has “insufficient to quantify” paraprotein no matter what he does… so they don’t much bother about that – they only count his kappas and lamdas, and watch his kidneys. The bottom line seems to be: as long as you are “well”, don’t worry about the numbers. So keep to zero symptoms and you will be fine!
WBC 202? What you doing with all those? I really think you should share and send some down to Mike!
Ooops – that was platelets! 😀
Tim has gotten readings like that and then went back to zero. It can bounce around like that but still stay stable for a long time. Only B would be drawn into conversation with someone who winds up being a driving instructor.
We got more snow today. I had Tim’s shiny new truck out again and he
did tell me to be careful this time. He said, “don’t forget to put it in 4 wheel drive.” I’m thinking, “hmm, the 8 inches of new snow should be enough to jog my memory. ” I’m amazed that he doesn’t get more nervous about it as the roads were bad but then I realize, he never saw the
check that bought it. Mrs. Claus took leave of her senses last year. ;o)
At least you’ll be able to take a cheap photo of the MIL in your new comfy chair….lolx
Comfy chair, a camera, more Deep Heeting rub on the door frames and lots of zeros… what more could a gal want in the middle of winter?
Medicinal nachos??? I will have to look into that! 😉
Well, with the Neutrophil numbers, I can’t make heads or tails out of what you’re talking about. . . ;]
* “without” That’s how flustered I am.