New Blog Address

Hi all,

Just to let you know that I have now moved to word press.

My new address is https://debsjourneywithmyeloma.wordpress.com/

I'm hoping this will allow people to sign up to get email updates, and also for me to do iphone updates....blogger was just very old fashioned!!

Give me some time though....need to do a few other bits first!
Debs x

Bone Marrow Biopsies, Peripheral Neuropathy and Wigs

So, my appointment last week confirmed what I had expected. I am now off the velcade and awaiting transplant!!

The day started with a meeting with Faith who said that the PN was now significant enough that she felt it was better for me to come off it and move on to transplant. Nick and I were happy to agree as it has been so long coming - here's hoping we don't regret it! She talked us through a bit of the process and a few of our concerns, and more crucially (?!) she agreed to us going on holiday to Devon beforehand. I didn't think that we would even have to check, but they have been quite concerned in case I become ill....apparently my immune system will be pretty low after the chemo.



Bone Marrow Equipment

 On from there to the Bone Marrow Biopsy. Yuck! However, the diazipam really did help....that and having a very good nurse who a) put me at ease, and b) was much more gentle. For the first time ever, I didn't squeeze Nick's hand until it was blue, so I think he was very grateful too! Don't get me wrong - I would hate you to think I wasn't a hero - it still hurt!!! I've attached a picture of the corkscrew that they use to perform the procedure.....barbaric is the only word I can think to use about it, but there is no other way. And because you can't numb the bone, all they can do is anaesthetise the skin around it....you just have to grin and bear the grating as they go into the bone and collect that bone marrow. Hopefully now I have the secret to a less painful process and I'll just have to test it when I have my next one 28 days after transplant.

We also asked to take a look round the ward I'd be on..it seems there are 2. One where you share a room with up to 3 other people, and one where you have your own room. Now the single room sounds remarkably appealing....ensuite, tv, computer with internet, what more could you want. Versus shared room: internet (not yet working), shared bathroom in the corridor, and having to share with 3 other people. I so wish that I had the choice but sadly I don't. The likelihood is I will be on the joint ward which I am sure will be fine when it comes to it. And there is a strong chance there, that I might make some friends which I suppose would be less likely if I am in a single room on a different ward.....I will keep searching for those positives, but that ensuite will be sorely missed!!!!

Since then, time has been busy, not sure what I've really been doing????!!!! I don't seem to have got hugely prepared and am trying to do some of that today. I think a lot of time has been spent talking to people, about me and about my mum's op. I've also been trying to see her more although Sam being sick put pay to that on Monday which was my dad's birthday. She is really worried about her operation and I wish I could take that worry away from her. I want, and need her to be positive. I know how hard that can be, but I am also so aware of how important that is to a good recuperation, and given that she goes in on Monday, I need her to be well and truly recuperated before I go in. I don't know if I could go in for mine if she wasn't doing well...I think I might have to postpone it.

I've also been suffering the last 2 or 3 days with even worse PN. Last night I lay there in bed with my feet and calves just throbbing....my toes felt like they were broken and the rest just hurt like I've never had them hurt before. I feel quite depressed today with it as it makes it so hard for me to walk...I look like an old lady. When I think that before I started treatment I had no side effects to all intent purposes, this has become quite rehabilitating and quite difficult to come to terms with. I find it so hard that I can't walk far, and that I am really pretty unable to take the kids anywhere now. I am still driving but not sure that I should be. I can't bear to stop though and to have to admit that it has got quite that bad. I suppose I keep thinking tomorrow it might be better. And I have SO SO much to do, that not being able to drive to town etc would make life so much more difficult. And part of me keeps just saying that perhaps I'm overreacting.....



1st Wig



1st Wig - front view

I wonder if another part of me feeling a bit more emotional is that I had a wig fitting yesterday. I didn't feel like I found the whole thing that hard but I've been really grumpy with Nick since. It wasn't a nice experience, but largely as I've been avoiding looking at how large I have got since I started treatment. But yesterday I had to sit in front of a mirror for 2 hours.

I'm not sure about the wigs at all. I have narrowed it down to the two I like the most but the one I think I like most isn't the one that Nick and the kids like. And that is important to me. I've attached them here....one is asymmetric and is very different to what I would normally choose as I would normally be worried about not being capable of styling it (not something I have to worry about!). The other is very much like my normal hair but with highlights. But I feel like it looks a little more middle aged. Part of me wants to be something different after all of this. But Rebecca was upset enough that a) it wasn't long and b) I'd only got a photo to show her and not taken her with me. So now I feel like I've lied to her and upset her. I know she's only 6 but it matters to me that she doesn't think I haven't done what I said. But I don't know quite when to get her to the place to view it....time is running out for us.

2nd Wig - like my current style

Time to Transplant

18th July - I finally have a date.

I feel bad because everyday for the last week I have meant to post on here. And everyday has been as manic as anything and I haven't had a chance. I will try to remember what has happened!

It all started at my appointment on the 7th June. We discussed the peripheral neuropathy (from now onwards to be referred to as PN) in my legs and hands, and it turns out that they consider it quite severe due to it reaching my achy buttocks!! So we talked about it, and they gave me 3 options;
1. Take another week off - I really didn't want to hang around with this for no reason
2. Get going again with a once a week cycle at full dose
3. Forget the whole lot and go to transplant

In the end, we decided to try doing the full dose thing and see how it went. I have been on tablets to help with the PN and whilst these make me feel totally drugged at times, they seemed to be helping, so I was keen to give it a go. On the day, we agreed that if the PN got worse we would stop the treatment and go to transplant, and so on this basis, dates have now been set. Just in case people want to know, it will look like this;

14th June: Bone marrow biopsy
28th June: Meeting with Stem Cell Consultant and consent to be signed
1st July: Chemotherapy (done intravenously) - this will help to clean out the bone marrow
6th July: Self injection of growth cells for 5 days. These injections help me to create the new stem cells which will be harvested
11th July - 13th July: Stem Cell Harvest. Hopefully this will only take one day, but if I don't get enough from day one, they will ask me to go back the next day, and if necessary on the 13th. These stem cells will then be frozen until my transplant.
18th July: High dose chemotherapy (mephalan) - this cleans the bone marrow and zaps as much as possible. They basically give me as much chemo as my body can stand without dying as far as I understand it!!!
19th July (I think): Stem cells returned to me!

I think that I will have a few days of feeling ok, followed by potentially feeling like death warmed up for a few days. They recommend isolation although I am on a ward of 4 and am allowed immediate family to visit so long as they are not ill in any way, shape or form, and they don't bring flowers....no flowers for ages :-( They are normally the thing that cheers me up!!!

Anyway, so I go back tomorrow. I think they will stop the velcade as the PN has been quite bad for the last couple of days. I hope so now. I also go back for another bone marrow biopsy....this time I'm being given diazipan or whatever the drug is called that makes you happy! It is meant to relax me so hopefully it will!!! I hate BMB's with a passion and so does Nick as he normally walks out with a numb hand from where I've squeezed it when the screwdriver goes round!!!

At the moment I feel ok about the whole thing. That scares me that I'm not too worried. But I know it is the right thing to do, and the only thing that really gets me is how it will impact on my lovely family...mainly the kids. Hopefully I'll be back before they notice, but even Rebecca has been more attached to me recently so I worry that they will find it hard me being away so long. The next few weeks will be full of getting things straight....advice for anyone who is helping (e.g. my lovely sister who is flying over from Beijing to look after the kids so Nick can still work and come and see me), doing the paperwork (boring!) and doing those sentimental things like memory boxes, sorting out the photos and writing those horrid letters that I hope will never be seen.

What has made the whole thing a little harder is that my poor mum is quite ill. She was the person I talked about before, but I needed to wait until all our family knew to write anything specific. She was diagnosed with bowel cancer about 4 weeks ago and will have her op on the 27th June....I feel awful that I won't really be able to help her much. She was admitted to hospital on Thursday for 2 nights as she was anaemic and needed 5 units of blood in the end. She's still not feeling great and so the family are doing all we can to help her. It doesn't rain hey. Still, we will get through her and me, and I hope that perhaps this Christmas we can do a big family get together to celebrate and to pray for a better year next year for us all.

Better go.....................will try to write more often now though.........

Countdown to zero!

So it was the end of cycle 3 meeting on Tuesday, but I thought I'd wait till now to update you as I don't get any figures until a few days aferwards.

So, where I was at 12, I have dropped down to 8....single figures, hurrah!!! They have said to me since the beginning that 'under 10' is what they aim for before they like to start on a transplant so I am really happy to finally have reached that....even if I plateau now, I am at a fairly good level. And if you consider that they were going to do a transplant (if I'd got randomised to that) when my paraprotein was at 27, this is SO SO much better!!

The other good news is that my other blood counts look a bit better too....no stem cell injections this cycle which suggests that perhaps my bone marrow is starting to produce the cells on its own again...the white and red cells, and my neutrophils....all good news as these are what compromise my immune system.

In terms of the neuropathy, they have now reduced my dose. Hopefully this won't impact on my speed of response, but it could do. They said that it was important to do this as whilst velcade doesn't normally cause long lasting neuropathy damage, it can do. So it is crucial not to have me at a stage that I can't cope with the pains, as if I was left with them I could be permanently disabled so to speak. It is a shame, but to be honest, I'm not sure I'd want to cope with much more in that area. My feet nearly always feel like they're burning off which isn't nice at all!. The calf pains have reduced the last couple of days, and I'm hoping it will stay like that. What I didn't ask is whether they would up my dose again if things get better but my counts slow down...there's a question for next time!

Anyway, half term starts today so no rest for the wicked, especially with two hospital appointments in the middle of it! Luckily my sister is around to help with the kids so that is good! Just have to work out how to rest in the middle of it all.

So in terms of timescales, for those who have been asking, we're still not much clearer! From what I can gather I will at least go through cycle 4 (this one) and cycle 5. That is another 5 weeks from now. If I got down to zero by then, I'd probably be looking at 4-8 weeks after that for the transplant....likely to be more like 8 weeks by the time they get the results of a bone marrow biopsy and get all the dates booked in.

However, they can give me up to 8 cycles of velcade and so if I had the extra 3 cycles, that would be an extra 9 weeks onto that timescale. So I think (!) that the latest I would have the transplant would be mid October, but it could be anytime between mid August and then depending on what happens with my paraproteins. Clear as mud?

Right, no sleep last night (tried to go without sleeping tablets...bad mistake mid steroids!) so am exhausted and going to chill out now.

Arrggghhhh

So much has gone on this last week or so....it is like a disaster film really. Everywhere I turn I seem to get told bad news but perhaps that's just life as you get older. So, I'm going to try to stay positive with it all!!! Hurrah! So today's post is an update...not to be negative but just to give some facts.

This cycle has seen mixed side effects. Up till Saturday, I'd been doing really really well which is good news. Even the peripheral neuropathy seemed to have calmed down and all was looking great. Me being me though had wondered if that meant the drugs weren't doing their job. Well, that will teach me to worry about everything, as Saturday afternoon brought the start of the exhaustion again (probably partly to do with all the bad news I'd been hearing) and then by Monday, I had started getting quite bad PN in my feet and hands. Which has now nicely spread into my calves. It is a really weird sensation....the soles of my feet feel like they're on fire and my calves feel like I have shin splints in them. Peculiar! It's been pretty frustrating as it hurts a bit to walk downstairs and to crouch etc.....I know, I should just stop crouching and walking downstairs....lol!

Anyway, I've spoken to the hospital and it sounds like there may be some medication they can give me to help with the burning sensation but unless I travel down there I can't get it so I'm hoping it calms down over the next day and I don't need to do that....as much as anything I'm not sure how safe I am to be driving long distances - Nick would probably have to take the day off work to take me down there and I'd rather avoid that if I could. He's been a gem though and has taken the kids to school today so that I could just stay and chill at home...which I have done. Feet up and doing nothing....unheard of but very very blissful!!

Apologies

Well I owe all of you who follow and comment on my blog a big apology. I should have updated this on Friday and I've neglected to do so.

So first things first. It looks like I got ahead of myself on the Tuesday...no change there but they've now explained how things have changed slightly which mean that the way I look at my figures now needs to change. Importantly though my paraprotein HAS gone down. From 15 to 12. Not huge but still a decrease which means that, at the moment, I am still responding to the velcade...big thing for me...almost bigger than the reduction in the pp. So what it means is that what I was using to predict my results, my total protein, is now normal. Basically where for normal people the paraprotein is 0, the total protein is normally between 60 and 72..mine is now down to 64 so I should no longer look at that as an indication of how the myeloma is responding as it is the same as anyone who doesn't have mm.

So it's good news really. The other bonus is that it'll stop me from trying to predict the results every 3 weeks. Now I'll just have to wait till the pp rests get back.

In again today and hopefully all is going fine. Seem to have a slightly low blood pressure so things have taken a bit longer. Thats because the velcade i'm on can cause hypertension so they have to be a little bit careful. Still will hopefully get home in time for the school run.

And again....bollocksy bollocks! (apologies for the second time to mum and dad)

I was going to save writing again until my next check up on Friday when I would know some stuff for certain but this last week has just been so eventful, and I now feel I must have been such a bad person in a previous life (thank god I don't believe in reincarnation in reality!!) that I thought I'd share.

So it all started on the day of the Royal Wedding (and can I say what a lovely, lovely ceremony I thought that was....perfect and it seemed so personal for such a HUGE event). We had friends over for a bbq lunch with their kids and after having spent a number of hours eating in the garden, the men decided to take the children to the park for a quick run round. We were to join them 10 minutes later. 8 minutes later, they're back with Rebecca being carried. Bless the poor honey, she had fallen off the posts on the obstacle course, hit her eye on the next post and gashed it open. 1.5"!!!! So a couple of hours in A&E, glue and 10 butterfly stitches and we were home! I have to say she was very very brave and we were very proud of our beautiful, if bloody and bruised girl.

Anyway, all stayed quiet until my next check up yesterday at the Marsden. I'd been a bit nervous as the cheats test that we've been able to rely on until now had not looked good when I was there last 2 weeks ago. But since then, I'd felt pretty rubbish and so was hoping that the drugs were kicking in. Sadly, it looks less positive than that and my results look the same as they did 3 weeks ago at the last consultant appointment. I will find out for definite on Friday. I spent the rest of the day pretty miserable and couldn't stop crying at the hospital (which I have NEVER done - I want to be known as the strong, happy patient despite being young with kids!). And it was a long day - 6.5 hours as it was mega busy and then they forgot to send my prescription down! I'm not worried about where it leaves me now, as I am comfortable about them going ahead with the transplant which we think is the next stage. It's not like the velcade didn't work...it did...it brought me down from 27 to 14 which is great. And overall I've come down from 50. So while for some people 14 is a bad number, for me, it's a pretty good one.

What I'm sad about is that it potentially rules out 2 main drugs from my treatment regime in the future...unless they're prepared to keep swapping me between drugs on a fairly frequent basis, I just don't seem to respond for more than a couple of cycles at a go. So that scares me and the 'what if's' start coming up in my head.

'What if the transplant doesn't give me a good remission (2-3 years) and I end up having to consider the allo (sibling transplant with 30% mortality rate in first year)?'

'What if I don't respond to any of the drugs any better?'

'What if I can no longer look at 5-7 years as a life prognosis, but am looking at 2-3 or less'

And then there is the whole frustration of that I now have to do another 1-2 cycles on the velcade while they decide if I've definitely plateaud. I don't mind being on it and having the neuropathy or the exhaustion, or any of the side effects if I know it is working. But to do it for no reason at all, when I know the drugs aren't working, just seems rubbish, unfair and totally totally crap. In some ways I hope the neuropathy gets worse so that they take me off for that reason.

And then I slap myself and tell myself to stop doing the 'what if's' and the miserableness at as it doesn't help anyone. And today I felt better about it than yesterday. So perhaps giving myself permission to do that whole morbid, sad thing for a day isn't a bad thing....it gets it out of my system (for a while at least) and allows me to get on with life like you have to, and to be honest, like I want to. I am always much happier when I don't allow it to take over my life.

So today started off better. I still feel ok as the neuropathy and other side effects have died down since my week off, and hopefully won't kick in for a few more days at least. So I went shopping, caught up with people and was doing ok. Until I heard the news that someone very close to me in the family has had some test results that aren't ideal. I don't want to talk about it in great detail on here as it isn't my place, but I love them very much and don't want them to be going through all of the insecurity that I can truly sympathise with. I don't want them to have to go through it and I now understand how helpless they feel with me. And if that person is reading this, I will ALWAYS be here for you and will ALWAYS do what I can for you while I am.

And here's hoping and praying that all the worry will be for nothing.....for them and for me!!

So bollocksy bollocks (oh out of all the words I shouldn't use, I love those so much!!) really does sum up the last week or so....and there are about 3 other events that I haven't even mentioned. I think 2011 could be a tough year for us as a family...but we are strong and WILL get through it. We are all very lucky to have each other, and very lucky to have close friends too.

Anyway, will update again after Friday.....