Stem Cell collection update ... and blog hiatus

I have pretty much put this blog to sleep as far as posting goes. I may resurrect it in the future if necessary (though of course I hope never to have to!) But I'm hopeful that it will remain a useful resource for people recently diagnosed with Mantle Cell Lymphoma - just to show that  it can be dealt with; you can get through treatment, often without too many side effects; and that life does indeed go on and almost go back to normal once in remission! That's how it's been for me. Yes there are the odd health issues/things I have to deal with, but I love my life and feel very positive about it continuing a long and good time!

I'll mostly be posting little health updates into my journeys blog as part of everyday life. But I did just realise/remember that I had a Stem Cell collection back in May 2010 which I posted about there, and I don't think that can really be counted as a 'little health update'! It was quite an ordeal (in a minor kind of way!) ...  I'm not going to re-post all of that here, but instead link to the post so that people can read about it. So, here's the link: http://susiegb.blogspot.com/2010/05/health-not-yoga.html. (The 'ordeal' bit was more of a mis-management/understanding issue I hasten to add!)

Good blood test results, but no sleep!

I went to have my monthly IV-IG infusion yesterday. The nurses always do blood tests before they start, and I was pretty pleased to see that my WCC and neutrofils had come back into the normal range! They'd been down for the past couple of months ...

WCC - 4.4 (normal range 4.0 - 11.0)
Neutrophils - 2.6 (2.0 - 8.0)
Platelets - 123 (150 - 450)

Platelets are still down but they may well always be down! In fact, looking at the previous post they were exactly the same then (July)!!

I'm seeing Dr B again next month before the December infusion. He's ordered up some extra blood tests that I'll get done before I go and see him. Hopefully all will be well! :)

However, I should note that it's actually 4.00am right now! I am not sure that I have slept at all - if I did it was only for 15 minutes here and there! I'm feeling OK at the moment but I don't expect I will by the end of the work day ... sigh! I'm wondering if this is because of one of the drugs they give me prior to the infusion, to stop reactions. Some 'cortico steroid'? Does that sound right? Who knows ... ! Anyway, I think I'm going to refuse to have this drug again next time. I really don't like tossing and turning all night! I'll see what the doctor says at least!

A couple of days ago it was the Melbourne Cup - the (horse) 'race that stops the nation'! It's one of those things like the Grand National in England. Everyone at work has Melbourne Cup lunches, wears silly hats and gets big TVs in to watch the race at work! And then there are the sweeps. You know - you put in $1, $2, $5 (whatever the amount for that sweep) and you are randomly assigned a horse. Well, one of the young IT Helpdesk guys was persuaded to set 2-3 of these these up for our department, despite protestations that he didn't know how to. So he spent I would estimate at least a day setting up these complex Excel spreadsheets that would randomly assign a horse to a person. And then we discovered after the race that he hadn't realised that he had to 'fill' each sweep! And there was at least one sweep where the winning horse hadn't been assigned to anyone!

I don't think he's ever going to live this down! I told the nurses and they all fell about laughing! At least he's ensured he won't be roped in to do this again next year!!

Great news!

I'm so happy - today I had my annual CT scans and they came back clear! I don't have to have another one for 12 months - unless of course something else shows up. I was reasonably confident that nothing would show up, but of course I was feeling fine when I was first diagnosed so that isn't really an accurate measure!!

My haematologist is still talking about trying for a stem cell collection. But remembering that we were never able to collect stem cells when I was in hospital, he wants to wait for some new drug(s) that assist in the production of stem cells for harvesting to be available on a trial here in Australia that I should be able to access. I don't know if/when we'd go for an autologous stemcell transplant - he told me that he has some MCL patients that had chemo followed by an auto SCT, and others that didn't have the transplant, and both groups are doing equally as well. But he agreed it would be a good thing to have 'in our back pockets' if it was possible.

The other good news is that he'd ordered a fairly full blood test, partly to test my immunoglobulin levels. I've been on monthly IV-IG infusions for about 7 months now, and they are definitely showing an improvement. As I said to him - I was pretty convinced they were improving because it is now over 6 weeks since I've had a chest infection needing me to go onto antibiotics. All this year, the previous gap between antibiotics has been around 10-12 days at most! He repeated that with IV-IG infusions, they start to kick in around the 6 months mark, and it isn't till around the 12 months mark that the full effect is felt.

This is some of the results:

igG - 5.7 (g/L) (normal range = 6.6 - 14.9)
igA - 0.8 (g/L) (normal 0.7 - 3.6)
igM - 0.3 (g/L) (normal 0.4 - 1.6)

Haemoglobin - 120 g/L
Platelets - 123
WCC - 5.4
Neutrophils 3.3

All good! Well, Platelets are slightly reduced but nothing to worry about. And they did some 'cell surface marker analysis' and he said very few B cells showed up, and NO mantle cells. Which is a very good thing!!!

Report from doctor's visits (plural!)

Well, this week I somehow had 2 doctor's appointments plus the 2nd IV-IG (immunoglobulin infusion - see, I'm getting to know all the shortcuts!)

On Monday I saw Dr Bentley, followed by the IV-IG. Meeting with him was good - he even gave me a hug, and said I was looking well! He gave me the results from the bloodtest I'd had before my previous visit last December:

Haemoglobin: 111
Platelets: 131
WCC: 3.7
Neutrophils: 1.9

Not too bad. They were a bit down from October, but probably because of all the antibiotics etc. I'd been taking. I'll have another bloodtest before I see him again in a month's time, and hopefully they'll be further up then.

The IV-IG went much quicker than last time. I had all the drugs before starting, to stop me having a reaction to it, and I think it took about 3.5 hours this time. I'll time it properly next time so I know!

Then today (Wednesday) I had an appointment with a respiratory physician. Because of the recently-discovered bronchiectasis that I have. I had to do this 'lung function' test, and all that blowing out hard etc. and re-doing and re-doing - it made me feel that I didn't have that much 'lung capacity' after all! But then when I went it to see the doctor, he ended up telling me that I had above-average lung capacity (for my age!!) So I was pretty pleased about that! I'm sure it's from the ashtanga yoga breathing (ujjayi breath) I've been doing for the past 7 or so years of yoga!

Apart from that, he did various pokings and proddings and asked heaps of questions (as well as reviewing the CT scans). And ended up saying that it was very mild, and as long as I kept up the yoga and other exercise I wouldn't need to do any of the other exercises the physios had given me. And just reiterated what both Dr Bentley and my GP said, that if I get a bronchial infection I'd need to go onto antibiotics quickly, etc etc. And no need to come back to see him at the moment ...

So all in all, pretty good news. I'm feeling pretty happy about things!

It wasn't so bad!

So, I had the first gammaglubulin infusion (IVIG) today, and apart from the fact that I had to get up at 5.15am to get to the hospital for 7am, it wasn't that bad really!

Of course I did have a few reactions which slowed things down. They up the flow-rate gradually and once they started doing this I started to have a bit of difficulty breathing. (Nothing dramatic - just couldn't breathe in as much as normal.) So, the dose went down again for a while. Then the nurse upped it again a couple of times, and I suddenly started shivering, and feeling really cold. So the nurse rang my doctor, and I got given an antihistamine and some cortizoid steroid or other. They had to wait for half an hour for them to kick in, and then my infusions were re-started, this time successfully! The flow rate get getting raised with no problems!

It was nice to see all the old familiar faces, and they were all pleased to see me too (even the cleaners and people who bring meals round remembered me!) And sitting in the day chemo room is a really interesting experience! People who haven't had cancer, or a close friend/relative with it would never imagine it like this. Everyone is really cheerful and happy, reading their books/newspapers/magazines, listening to their iPods, chatting with their friends who've come in with them. Not the sort of picture that would come to mind about having to have chemo! Because the type of chemo I had (HyperCVAD) was very intense, I actually had my treatment as an in-patient in the hospital - stayed in for around 14 days each time. So this is a new experience for me!

Anyway, I guess it won't be that bad, especially if I either don't have those reactions again, or else I'm given the drugs at the beginning. It took about 5 hours this time but without all the stops and starts it should get back down to no more than 4 hours I think. Apparently the effect is cumulative - it won't make that much difference after just one treatment, but will build up over the next few months. We shall see ... :)

Sigh! and a bit of a hissy fit!

Well, I saw my specialist today. And as suspected (see this post on my other blog!), because my immunoglobulin levels are so low I do have to have the monthly infusions ... in fact I'm having the first one on Friday!

I'm just going to have a bit of a hissy fit, OK, and then I'll calm down and it'll end up being a part of my 'normal' (!) life ... :)

But right now, this second - I so did not want this to be happening to me! I know it's not a huge thing in the whole scheme of things, specially after what's happened to me in the last year or so! But somehow it really got to me. Almost more than when I was first diagnosed, oddly enough!

Actually, just re-reading that makes me smile and feel somewhat better! I really do need to get a grip on reality!

The waiting room was heaving with people and Dr B was a little harassed! I think there had been some double-bookings or something. And there was me trying to weazel out of having to go through this whole regime (which I might add, is open-ended - ie. every month indefinitely!!). I kept bringing up this and that that I'd heard about on forums, or read on blogs, and he basically kept coming back to the fact that he was the lymphoma specialist and he sees/treats first-hand many many lymphoma patients. Really, (and this is me speaking now) - who is the lymphoma expert? Me because I've read a lot about other people's experiences with it, or him who is dealing with patients and treating their problems every day ... ?!

I think it's the bronchiectasis that I've developed that is the main culprit. If I hadn't come down with that, then even though my immunoglobulin levels are low, I might well have been able to avoid the infusions. But apparently once you have that, it's a prime source of infection in your lungs and because I have a damaged immune system I'd be likely to end up in hospital for a week each time!

So - there's no avoiding it! As I knew all the time. My feeble attempts at knowing what was the best treatment for me better than him were always bound to fail. And I really do know that in a month or two, this will turn into 'no big deal' - as my friend kept telling me at lunch! I was in such a state through the appointment that I never asked about my blood counts or asked a lot of the other questions I had ... I'll be seeing him again in a month and hopefully I'll do all that then!

I did go up and see the nurses after my appointment (Dr B's rooms are on the ground floor of the hospital I was in) and they were very pleased to see me (and the home-made fudge I'd brought them as a Christmas present!) Big hugs all round - and they said they'd make sure I got through the infusions quickly!!

I do feel better after all that whinging (Aussie term meaning complaining!) and stuff! Hopefully I've now got it off my chest and I shall just go back to enjoying life! Which is good, let me not forget that! :)

October visit to my specialist

Saw my haematologist on Wednesday for my 3-monthly check-up. It seemed like I/we spent most of the visit talking about my current (not-related) health issues with sinusitis + a "post-viral cough". Which I have posted about interminably on my other blog! I said to him - I'm treating you like my GP! But he didn't mind - I think he likes to know pretty much everything that's going on with me health-wise ...

He had the results of the bloodtest I'd had the previous week (more about that later) and, having done a quick check of me told me that there were no signs of the lymphoma coming back. Well, I hadn't thought there were, but it was still very nice to have this emphasised to me.

He did say that, because my immunity had been pretty much wiped out last year when I was having chemo, there was a faint possibility I had some obscure infection in my lungs that hadn't shown up on the chest XRay my GP had got me to have, and so I'm having a CT scan of my chest next week. I didn't know CT scans would show this sort of thing. Anyway, it'll be good to - either knock out that possibility, or else find out and get it fixed. It's been over 6 weeks of interminable coughing and I just want it to end!!

Anyway - to my blood test results. Great news!! They've gone up again - and I would have thought that all the effort my immune system must be making fighting this 'whatever', would have brought it down!

WBC: 4.5
Neuts: 2.6
Platelets: 152

All now within 'normal' range! Yeayy!! It's taken a year, since my last chemo. And the WBC and Neutrophils have pretty much doubled in the last 3 months. All in all, I'm extremely pleased!!

I'll hear from him later this week about the results from the CT scan. Apart from that I'm going back to see him just before Christmas ...

Portacath came out

This month another step away from being a cancer patient and back to normal life! My portacath was taken out on Thursday 7th August. Happened at the Wesley Hospital, same place where it was put in. Brisbane Private Hospital, ('my' hospital) being smaller and not having the advanced Radiology facilities to do this.

I had it done under twilight sedation, which I much prefer to full anaesthetic. Pretty simple - just half a day there. Then Lorraine came to collect me and drive me home, as I couldn't drive that day.

I think I probably had slightly under-estimated the effects this would have on me. I assumed it would be like the insertion, which was really easy. Or am I just not remembering it accurately? When I had it put in I went straight from there to the Brisbane Private Hospital, onto mabthera (rituxin), and then chemo the next morning. So there was a lot of new stuff going on!

Anyway, I was expecting a bit of pain/discomfort for a couple of days, and then nothing. So when it still hurt to touch 4-5 days after I began to wonder/worry. But having raised this on the Webmagic NHL board I heard lots of stories about discomfort/pain lasting for 2-3 months, so decided to stop worrying! After all, it'd been in there for 13 months, so it's bound to take a bit of time before it settles down.

And now it's 2 weeks since I had it removed. I've had all the stitches out and it's feeling a lot better. I don't really imagine it's going to be a problem at all ... :)

Great scan results, Good report from doctor

Well, readers of my other blog will know that I had PET and CT scans a couple of weeks ago at the end of June, and the results were a big Negative, which is an even bigger POSITIVE in terms of my health ... In other words, no evidence of disease! So that was great news. Today I saw my doctor for my 3-monthly appointment, and we went through my big list of questions (which I always seem to accumulate to take to him!) Of course there were a few that I somehow didn't get to, but most of them got answered.

I asked him about Stem Cell collections (actually I meant to ask him about potential Stem Cell Transplants, particularly a mini Allo, but somehow we didn't get to that!) Anyway, after my last chemo we were trying for a stem cell collection, but the required stem cells just weren't materialising, so it never happened. I'd heard about a new drug called AMD3100 that supposedly mobilises 5-8 times more stem cells than Neupogen alone, so I asked him about this. He said that it's still in trials, and isn't available for use in Australia. But he said that as my blood counts were improving (more about that later) he thought that maybe at the beginning of 2009 we might be able to try again for a stem cell collection, using some other drug that I hadn't heard of and can't remember (!) He said that if we tried now it would most likely not succeed as my blood counts weren't high enough, but hopefully in a few months' time it would. He also said that he wouldn't be planning on giving me chemo as part of that procedure.

On the blood test results, my levels are slowly (slowly!) getting better:

Haemoglobin - 111
Platelets - 106 (first time they've been in 3 figures for a year!)
White Cell Count - 2.8
Neutrophils - 1.2

Still low compared to when I started on this 'interesting' journey, but creeping up all the time. I read somewhere about someone whose blood levels took over 2 years to recover. Doctor B said that mine may never recover to what they were but they would be 'acceptable' and enough to keep me from getting infections etc - in other words, to do the job my white blood cells are meant to do.

What else - oh yes, my portacath can come out! I've got an appointment for that to happen in about 3 weeks' time - yeay! As he said, if I need it again it isn't any big drama to put one back in.

We discussed future scans. He said it was up to me whether I had them regularly. He feels he can tell what's happening with me without them, so it depended on whether I needed that extra check. He said he probably wouldn't recommend PET scans anyway as they often give false positives. In the end we agreed on yearly CT scans, which I'm happy about. Interestingly, he said something to the effect that early detection of a recurrence wouldn't affect treatment. In other words, it didn't matter if it wasn't found for a while ...

I also told him about a NY Times article I'd read recently stating that cancer was becoming more of a chronic illness than a 'death sentence' (which I'd never taken it as anyway!) He said that was exactly what he'd been telling students recently!

So anyway, I'm very happy about things! I see him again in 3 months time - no doubt with a new list of questions! But right now I'm happy to let my remission from NHL take a back seat in my life.

I'll be back posting here in October after my next appointment - in the meantime those who are interested in following my 'normal life' can do so here!

:)

New template - I did it!

Well, I just couldn't leave this blog with that other boring, boring template! So I've found another one. It came from the same place as my other new one (see the link at the bottom if you're interested).

And now to my final health report for now! I had another blood test last Monday and saw my doctor the following day. (my birthday!!) The blood test results were - well, I was going to list them all out but now I can't find them!! If I find them later I'll come back and change this post, but in the meantime ... Basically my WBC levels had come down from the last test (done about 6 weeks ago). But the doctor reckons that these previous test results were probably reflecting the booster neupogen injection I'd had a few weeks earlier. If we take those results out of the equation, then my WBC levels are coming up. So he was pleased, and so was I (once I'd had that explained to me!)

I'll be having scans (PET and CT) at the end of June, and will see my doctor a couple of weeks after that (though he did say he'd ring the results through to me). Assuming all is well with them (which we both are!) he said he's not going to get more scans (or BMBs) done unless there's some other indication of problems down the line in the future. I guess I'll be seeing him every 3 months or so for a while. But I am clear to have a flu injection (which I wasn't last time I saw him), and I can do anything I want! Like go to India, Morocco (that's next year!) etc etc! Yippeee!!!

So, I'll post updates on my health here when there's news. Let's hope there's none, or very little!! No - I'll report here whenever I see the doctor / have tests, etc. But otherwise, for my normal, (happily boring!) life, you'll have to go to my other blog! And, see you here again in July ... :)

party, and blood levels, and easter

In the order of the blog title ...

1. I'm having a party! Yes, shy, retiring me is getting out there and having a party! I figured I've got so much to celebrate after the past few months, and decided to combine it with my birthday next month. And for the invitation, I found this photo of me taken more years ago than I like to remember! It was in India in the 70s ... :) Just a few birthdays ago, as it says!!

So the party is going to be held in the back yard of this lovely cafe in Brisbane - they are doing the catering and all. I just have to invite the people, extract a contribution from them (!) and do the music!! No doubt pictures from it will appear here afterwards! It's pretty exciting! All part of my new year's resolution to be open to new opportunities!


2. And next: I had a blood test yesterday and when I rang my doctor for the results I was fully expecting to be told they'd fallen and I needed to have another injection to stimulate the white blood cell production. But the injection I had last month seems to have jump-started my bone marrow! My haemaglobin had gone up to 82 (from 50) and my neutrophils are now 3.1 (up from 1.something)!! I was thrilled and my doctor is really pleased too!

3. And I had such a lovely time in NSW (new south wales) at Easter! My brother-in-law and nephews came to my Mum's on Good Friday and took us out to lunch. That evening she had arranged for some people to come round for drinks (my mother being an indefatigable entertainer!). Then on Saturday we went to Sydney, had yum cha in Chinatown (with Jo and Emma), and then saw the Elton John musical - Billy Elliott. Based on the film ... Just fantastic! Apparently it's going from Sydney to New York - so all you NY-ers who are into muscials - go and see it! It's still on in London apparently, too. And finally on Sunday we had a quieter day - phew!

Got home on Monday afternoon, just in time to receive 5 chooks coming to stay for a few months while their owners go overseas! Fresh eggs again - yum!

2 steps forward 1 step back - sound familiar?!

I guess that's my life story at the moment. But hey - I should be grateful it's not 1 step forward 2 steps back!!

So, on Monday evening I got that 'scratchy sore throat' feeling and thought - uh oh! One of the guys I work with had been off for a week with a really nasty cold and it looked like it was coming my way! Which it was/did! I've been off work the last couple of days, which means eating into my holiday days, as I've got no sick days left at the moment! No yoga, no 'curves' ... hopefully I can make it to yoga on Saturday. We shall see.

I started with the 1 step back bit. But on Tuesday I went to see my doctor, and the results from my blood test the previous week were pretty good! My neutrophils are up to 1.1. Can't remember when they were that high before! Just so you know, 'normal' is 2.0 to 7.5. But mine have been hovering around the 0.4 - 0.6 range for months! And my platelet count was up too, to 57. (Normal count = 150-450 so a ways to go there!)

However, before anyone gets too excited, he said it was probably largely because of an injection I was given just before I left hospital last month to stimulate the production of white blood cells. The effects of this last for about a month. However, I'm going to have another blood test in a couple of weeks, and if it's gone right down again, have another of those injections. He thinks it 'may' help my bone marrow recovery. At the least it should help me avoid getting staph infections!

Anyway, though I've been fed up having to be off sick yet again, and feeling like death warmed up(!), I'm still pretty pleased about my blood results. And today I've been feeling a bit better so I may go back to work tomorrow. Just the one day and then the weekend.

big smiles all round

Me and the pussycat are home - both of us very happy to be here! Feeling 100%, bone marrow completely clear and everything looking great again!

Tomorrow a big day working on the foame:e poetry zine, the new edition for which goes live on 1st March. The 2 other people involved are coming over here (with lunch!) to spend the day working through what's been done and what still needs to be done.

Then Sunday and Monday I can collapse again, going back to work on Tuesday ... :)

she spoke too soon ...

Well, funny how things can change! During the week I was feeling more and more tired, and suddenly realised I should be checking my temperature. On Friday evening when I got home from work I did that and discovered I had one! 38.2C! So I rang the hospital, and got a call back a while later telling me to come back in!!

Not what I had been planning to do with my weekend!! Most of my clothes were waiting to be washed over the weekend, I had hardly any library books ... a very different scenario from when I would go into hospital last year! And what to do with my pussycat?! In the end I decided I'd probably only be in a couple of days, so left lots of food down for her, plus her cat-door open so she could get in and out. Took enough clothes for 4 days, a couple of books and my laptop, and drove off. Five days later, and I'm still here, though I'm feeling fine!

Turned out I had a staph infection in my porta-cath (the device they 'implanted' into me to drip intravenous fluids/chemo into me). God knows how it got there, but ... Anyway, they had to resort to pretty heavy duty antibiotics to get rid of it (I've been on 3 different ones of varying strengths!). But by Monday I'd stopped having shivering, teeth-chattering fits and/or heat attacks and my temperature had gone back to normal! And I have been feeling perfectly fine since then! My doctor is keeping me here till the end of the week as he wants to keep the antibiotics up so make sure it doesn't come back. Which seems like a good idea!

Luckily I managed to get someone to go out to my house on Sunday to collect some more clothes, and most importantly, to catch Mieke pussycat and take her to the pet motel! That was such a weight off my mind that she managed to do this! I'd been so worried about her ... she's such a sociable cat, and hates being left for even a couple of days!

Felt really bad to be off work for another week (at least) after I'd only been back for three. I know it's not my fault, but still ... They are, of course, being really supportive and telling me to take whatever time I need.

I certainly do live in interesting times ... :)

I learnt something ...

from the nurses, not the doctor, yesterday! Apparently it takes 6 to 12 months after you have finished having chemo, for its effects to fully leave the body!! Maybe my doctor or someone told me that before, but if so I'd completely forgotten it! I really need to take that on board and get rid of my unrealistic expectations about what I 'should' be able to do!!

Anyway - my last mabthera treatment yesterday - went fine, like a breeze. Though my blood levels have got lower this time. I'm wondering if the fact that I'd given up on taking the astrogalus (Chinese herb) lately has had an impact on them? I stopped because I thought it wasn't doing anything. My blood levels didn't seem to be improving. But they weren't going backwards either!! Anyway, I'm back on that now! And my doctor said just to watch my temperature (ie. take it if I think it's rising, and let the hospital know immediately if that happens), and not to worry?!?!

Meeting with doctor went fine. He's scheduled a series of 'end of treatment' tests for after Easter - bone marrow biopsy, PET and CT scans. He said he's not expecting to find anything, but just to be sure/have as a reference point. And then (I think) I'll be down to 3-monthly visits to him, to keep an eye on things.

Now I can forget about it all for the next 6 weeks anyway!!! Have to take it a bit easy today - I'm always a bit tired the day after treatment. But things are good, going well ... !

Back to class ... at last!

Well, I went to my first Mysore class in just over 6 months today! And it was ... wonderful, and sort of like I'd never left! Not that my practice was like it had been last July. On my teacher's suggestion I did less sun salutes, left out the parivriti (sp?!) variations and finished standing early. Then just did some sitting - to marichyasana C, and some finishing poses. But it felt great - didn't feel like I was pushing myself too much or anything. And the teacher said some of my practice even looked better than before!! Go figure ... !

Apart from that I have been working my way through a list of things to do before I go back to work - which day is fast approaching - 21st January. I had my 2nd-last hospital treatment (mabthera) last Tuesday. Am going to have a proper discussion with my doctor next time about what happens next, etc!!

And next weekend (well, probably next Friday) I'm going down to stay with a friend in Byron Bay (or nearby) for the weekend. Same place I went to with Wendi for a night a couple of months ago. Hopefully the weather will be nice enough to swim - in fact I think it'll have be pretty bad for me to forego a chance to swim in the ocean!!

new year, new healthy me!

It's kind of surreal to be here in a new year, looking back at last year, and thinking about aspirations (resolutions?!) for this year. Previously when I've been here it's been kind of prosaic. Stuff like - better job, travel overseas, progress in yoga, and add in good health as an afterthought! This year I'm wishing everyone a happy and extremely healthy new year! And that's definitely what I wish for myself!

When big things happen to you, it makes you realise what is really important in life! I look back at the last 6 months and still kind of roll my eyes and wonder - did that really happen? What was that all about?! Still feel like I've spent the past few months in a kind of bubble, beside but not in 'normal' life. And as I look towards getting back into that (so-called!) 'normal life' later this month, I feel it's important to not just get submerged back into things as though nothing had happened. I'm not really sure what that means - mostly that I want to appreciate and enjoy life, and not just drift through without stopping to experience what's important!!

One of the things I'm looking forward to is starting yoga properly again! Classes start at my shala again next week ... I don't know how far I'll get - certainly no further than navasana! When I was at the Woodford festival this past week I did a couple of 'flow yoga' classes. Showed me where my flexibility is (or isn't!), and ditto strength. I couldn't even hold downdog for long ... ! But in a way it'll be nice to start over again ...

update from downunder

Well, since I last wrote I've been getting stronger, and getting accustomed to being 'in remission'! So I'm no longer faintly downcast (?!!) and half-wishing I was still going to the hospital! (Did I really feel that? Saying/writing it makes it seem even more ridiculous!!)

It seems this feeling runs in the family! Another of my half-sisters who also had cancer apparently had to stop after the 4th of 6 treatments for the same reason I did (ie. low white blood cell count), and felt like she'd failed the course! Even though she's now well over the 5 years remission ('clean'?!!) mark. And a friend in London sent me an email saying I had to stop being institutionalised!! I laughed, because it struck a chord! She (you!) will be glad to know I'm well on the way to being de-institutionalised!!!

Yesterday I went to the hospital to have another CT scan, and then to have my monthly treatment of mabthera. Had a good chat to the doctor. Apparently my WBC (white blood cells) are improving, but still taking a long time - ie. not there yet!!

I asked him whether he thought I'd be able have the stem cell collection procedure at the end of this treatment (February). He kind of sidestepped that and said he no longer felt it was a useful treatment for my type of lymphoma. He said he used to do it and transplant the stem cells at the end of treatment, but research had shown it didn't make much difference one way or the other.

Anyway, things still looking good, although my haemaglobin is a bit down at the moment. I'm taking folic acid, but I think I'll look out for B12 too - not being a meat-eater means one's options are more limited (broccoli, spinach or supplements as far as I can tell!!)

I've started going back to the gym (Curves) to build up some strength. I still can't stand up from sitting on the floor without using my hands, but my strength (such as it was!) is definitely on the way back.

For whatever reason (I can think of a few but don't know how valid they are!!) I've decided to wait to start back at yoga till after Christmas and Woodford. Too many interruptions as far as I can see between now and January. I will keep doing some sun salutes etc. but a proper practice will have to wait till then.

And I'm going back to work on the 21st January! So I'll have to fit in everything I want to do (mostly getting stronger and better!) before then ... :)

In Remission - no more nasty chemo!!

Yes, it's true! Much to my surprise - in fact I was quite taken aback when my doctor told me that I was in remission and he wasn't going to give me any more chemo! I had seriously been expecting to be told I'd be back in hospital the following Monday! But no, I'm finished with the chemo and am now on the upward slope of getting my strength back and planning to go back to work next January!

I'm still having the monoclonal antibody treatment (called Mabthera here in Oz. Rituxin in the USA) every 4 weeks until February. I have that as a day patient at the hospital - 'administered' the same way as the chemo, ie. through the portacath. But that's all. No more anti-fungal medication (?!), no more spending weeks in hospital ... ! To be honest it still seems really odd! Everyone that I tell is utterly thrilled and excited, and I'm still wondering about it all ...

I guess part of that is because he did say that since my white blood cells had still not recovered sufficiently, he actually couldn't give me any more chemo, even if he'd wanted to! So I guess it's lucky I am in remission!! And to date he/they haven't been able to do the stem cell collection. Don't know if they will in the future, or if it's just something that won't be possible.

I do have heaps of questions now, but at the time I was just so dumbstruck (I'm writing them down to ask the doctor next time I see him)! He kept saying to me: "this is good news Susie!!" Anyway, they'll do a whole heap more tests (bone marrow biopsy, CT and PET scans) in February, and hopefully (as I fully expect!) I'll be clear then too ...

So ... more news later but it was way past time to write here again). (Don't get me started on the computer problems I've been having!!)

:)

Still at home ... it's been a while!

Haven't written for ages so I'm pulling myself together and putting a few things down!

I did get out of hospital that Friday - without having the stem cell collection in the end. My white blood cells and stem cells were not recovering fast enough and it was going to go into the following week ... the head sister on the ward basically told my doctor I'd go mad if I wasn't discharged, so I was!! Good to see the people right on the ground still have that power - or in this case that I have a doctor who is happy to accept their recommendations!!

So anyway, I came home and my friend Wendy was here for 2 weeks with me which was lovely. We had such a lovely time together, as she said, it's all very well to have long distance friendships, but you really need to spend time together sometimes! She's on her way back home now - left on Monday for the UK and back to Portugal in another couple of days.

When I first came home I was really tired and lacking in energy - much more than in previous times. But I have slowly gathered strength again and now - just over 3 weeks after I left hospital, I'm feeling pretty good. I've been having blood tests regularly - so far my wbc are still low but I think recovering now. I've had another bone marrow biopsy to see what was happening, and the good news is that the lymphoma has not returned!

But I'm on a 'wait and see' policy about when I go back to the hospital / resume chemo etc. The doctor said he may end up changing my treatment around a bit ... I really hate this open-ended aspect - I want to see an end date!! But I have to a) know that 'this too will pass' (always easier to quote that to others than to apply it to oneself!!), and b) trust the doctor. Which I do ... I'm seeing him in a few days and we'll be able to talk about all of this, and hopefully get some sort of plan again!!

Next week I'm going down to NSW to stay at my mother's for a few days, which will be nice.

The other thing that is affecting my life at the moment is - car problems! I have spent so much on my car this year - it's had two major things wrong with it and was off the road for over a month. I live 15 minutes drive out of town, so this meant I had to hire a car for all that time ... And now, another similar problem!! It's in the garage now and hopefully they will fix it next week so when I come back from down south I'll be able to pick it up again ... Grrrrrrr!!!!