Clinics and chips & egg

B and I sat in the consultation room on Friday and the Prof walked in, sighed and touched B’s arm as he was passing and I thought ‘We’re screwed!’ – okay, I lie and you know I’m always completely honest with you I actually thought ‘We’re f*&%@d!’.

And then the Prof threw me by asking about that conversation with the young doctor a week ago – but I guess that’s why he’s paid the big bucks to keep one step ahead of the patients and keep us on our toes.  We decided I didn’t need to continually be told it was serious and when I said that I’d thought it was maybe because I was generally happy and that the young doc had thought I didn’t have a full grasp on the situation the Prof said that just showed that I was coping well.  B pointed out that we’d known it was serious from the start and the Prof said yes, but that was before any treatment had been started and it was now seriouser.  At the start there was the possibility of squashing it and even when it relapsed in February but now it was more a case of keeping it under control for as long as possible whilst keeping a good quality of life –  as obviously the past few weeks hadn’t exactly been top form.

So once again I have to be different and although myeloma is an individual disease mine is being particularly individual.  It would appear that my paraprotein level doesn’t go that high which is deceptive because of the large plasma cell content of the bone marrow.

Revlimid is known to affect kidneys and it would appear that the 25mg dose did that.  My kidney function had been good for the last year, as evidenced by the black figures on the Prof’s screen, and then from the first tablet of Revlimid the figures went red.  Things seem to be on a more even keel on the 10mg dose.  The myeloma suppression of the bone marrow (and therefore blood production) seems to have eased up as my blood counts are better (I only got my platelets count which had gone from 33 whilst in hospital to 130 – WOW – minimum normal range 150).  I asked if things really settled down with regard to kidney function whether the dose could be increased and that is a possibility.

So we know that the transplant doc had said that the best option would be a donor transplant, and indeed without one the prognosis was really poor, but that the plasma cell content of the bone marrow would need to be reduced prior to it and basically at this dose I don’t think the Prof was confident that it would reduce it enough/significantly – this was reading between the lines he didn’t actually state it in as many words.

I had six days worth of Revlimid left and then a week off.  The Prof said he’d see me at the Day Unit on 2 November as the clinic for the following Friday would be really busy as he was off the week before.  I asked whether I needed to take the Fragmin injections on the week off and although Revlimid is theoretically less likely to cause thrombosis than Thalidomide it was advisable so I wasn’t coming back blaming the Prof if I got a clot.  Oh, and a fellow patient and his wife, who I met the day I was kept in the Royal last, gave me a tip that he’d been given by a nurse – pop an ice cube on the area you intend to inject and you don’t feel a thing.  Not only this I’ve found that it doesn’t leave a bruise either.

We’ll look at getting a further bone marrow biopsy late November/December to check the plasma content then.

Good news with the MRI – nothing new – C7 shows 50% compression but everything is fine with the spinal cord.  I also saw the results on the screen and missed the opportunity to ask if the ‘benign sinus disease’ referred to was actually snot.

Overall Friday I felt really good.  B commented to me and the Prof about the sprightly-ness with which I got out of the car.  And I had a shower Friday night!  What the heck has this got to do with the price of fish I hear you ask.  Well when I’m feeling tired or in need of clearing my mind I CRAVE a bath – I generally nod off risking dunking the book I’m reading but I feel better for it yet Friday there I was in the shower and I realised that not only did I feel better physically but I felt better generally for seeing the Prof too.

AND I popped the cushion covers back on the cushions after over a week of them being naked – it’s a big job as they are sewn shut – I may have mentioned this before – which seemed like such a good idea at the time I made them instead of fiddling about with button holes.  DOUBLE AND we had egg and crinkly chips (fries) when we got home Friday as my appetite is generally getting better (and this is what I felt like) although I have lost 3kg (6.6 lbs) over the past weeks so I’m in no rush to put that back on unless it’s muscle – I wonder if Bud could spot me for a set of bench presses!  Buddddddddy, come ‘ere!

13 responses to “Clinics and chips & egg

  1. Such a lovely upbeat post Paula. I think of you often and send all my very best wishes – you stay in my prayers as always. So glad to read you are feeling a little better. X

  2. If it was raining cats and dogs and other people were grumbling, you’d be running around collecting them all with a grin on your face, I am sure! I am also continuing to pray and intend that your medical team is finding solutions that work well for you and sending you Reiki as well with those ‘energy’ messages!

  3. Your positivity (is that a word? not sure!) takes my breath away. Faced with all those figures, facts and theories I’m not sure how you do it (with only the occasional junior doctor-induced wobble), but I’m glad you do.

    I’m very happy to hear you’re feeling livelier – long may it continue!! And there’s never a bad time for egg and chips!

    Now I’m feeling peckish ….!

  4. you ARE an excellent coper. not to be confused with copper.
    I am invited to a baby shower and my gift will include one of the three myeloma buddies still nestled in a drawer. (my daughter is happily single at 33, son and d.i.l. providing only grand dogs who, btw, love their kongs)
    Anyway, the recipient is a young couple, son of friends, friend of my son and d-i-l also – he is a veteran of ewings sarcoma, they froze sperm (Briishs probably don’t use that word outright, you are so polite, but I don’t know what your term is) before his surgery and chemo and radiation. And now he is 5 years out and doing well. And they are having a baby, who will love his/her myeloma buddy, I just know.

    • What an excellent home for the first buddy! We would use the word ‘sperm’ but probably wouldn’t so much say it out loud as make the shape of the word and expect people to lip read! ;D

  5. I think about you lots, and I’ve never even met you. sending energy.

  6. I’m expecting to order some bunnies this spring.

  7. Egg and chips! EGG AND CHIPS!!!!!!!!!! wot about the cholesterol!!!!!
    And don’t make Bud Queasy bench pressin ‘im.;-) xx

  8. I was just thinking how we try to “read” the doctors to find out what they are really thinking – so their mouths are saying one thing while their body language is saying something else? Wouldn’t it be so much easier if they could just point to a map and say – OK you are here, let’s go to there and THIS is the way? And then it just… happened that way?
    Glad to hear you are feeling CHIPPER! That’s EGGSACTLY what the Doctor ordered! 🙂

  9. Holy cats, that “benign sinus disease/snot” got me…didn’t expect it! 🙂
    Now, about the evil plasma content in bone marrow: I have a smoldering friend whose BMB result in 2005 was 80%. And she’s fine & very active today (she takes curcumin, too). My BMB results were: 50% in 2005 (pre-curcumin); less than 40% in 2007 (after a year on curcumin). So I’m a bit wary of that particular test, though I’m sure it can be useful…Still, focus on your other numbers, too…
    Diet: how about adding some broccoli sprinkled with turmeric? 😉
    Glad you’re feeling better and jumping out of cars, to boot…you go, girl!

  10. If it wasn’t for the cholesterol then I think egg and chips would be every bit as good as curcumin xxxx

  11. Bloke in the Carpe Diem.....

    Hi Paula
    my partner is being treated chez marsden and our consultant has told us that there is no real evidence that reduced dose of revlimid works less effectively….. and so they have reduced it in her case and as you have found all other counts have improved….. and so far her remission continues. Good luck to you….. and I hope it does it for you too!

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