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!)

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!!!

New month new problem! (But I am smiling!)

Well, that's not quite true - I think I caught this cold at the end of last month, not February! But whatever - I caught a cold from someone (and don't think I don't know who you are!), and apart from the general 'wrongness' of geting a cold in the middle of summer!, it gradually went to my chest (of course!) and I started to feel worse and worse. By last Thursday I had to take the day off work and went to see my local GP. I did try to ring both my specialist and the respiratory physician but one was on holiday and the other had gone overseas!!

Anyway, turned out I had a temp of 38.4degC so the GP was more than happy to give me some antibiotics. They started to take the edge off by the weekend (which was an unavoidably busy weekend working on a website - someone had already come down from Rockhampton - 1000ks away to work on it with me!) So it was really lucky I started to pick up then! I've still got all the trappings of a cold - blowing my nose constantly, coughing, coughing, coughing ... But I've got my normal levels of energy back and feel fine.

Today was the next immunoglobulin infusion, plus another doctor's appointment. Dr Bentley told me I'd have to expect to catch things like colds easier, and for them to take longer to be got rid of - great! He changed the antibiotics I'm on, and also I'd had another blood test last week and he gave me the results.

Haemaglobin - 113
WCC - 8.4 (!!!)
Neutrophils - 6.2

They are certainly something to be excited about - especially the WCC. Normal range is 4.0 - 11.0!!

My immunoglobulin levels were also tested - I know nothing about these, although apparently when I started having the IV-IG, it was 2 which is apparently extremely low! It has gone up to 5 - he said he would have been happier with 6! But at least it's on the way up.

So - that's the latest issue of my health news! Stay posted for next month's issue ...

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's true - I'm really feeling a lot better!

Just a short note to say that the CT scan of my chest showed signs of a chest infection - nothing else! So I was prescribed some antibiotics for the infection which I started taking at the beginning of last week. Also last week I went back to the acupuncturist I had been seeing in the intervals between chemo treatments last year. I'd suddenly remembered him and wondered if acupuncture could help get rid of this infection/virus/whatever.

And - one or both of them have had a significant effect! I didn't say anything for a few days, because in the course of this illness I have thought I was getting better a few times, only for it to come back with a vegeance a day or two later. But I really am feeling so much better - yippee!!

I am looking forward to teasing my doctor when I see him again just before Christmas, by telling him that I don't know if it was his antibiotics, or the acupuncture treatment that fixed me up!!

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 ... :)

Practising with someone different

Well, when it came time to go into Brisbane to my yoga class on the weekend I didn't feel up to the 40 minute drive, so instead I practiced at home with Mr Swenson! It's the first time I've done that and it was good. Though I only got as far as the marichyasanas, and wasn't doing full vinyasa or anything. But it felt really positive. I've had a real block about practising at home for ages - best I was able to do was practice at work at lunch-time (don't ask me what the difference is - I don't know!) Maybe now I'll find it easier ... !

I actually got the David Swenson DVD last year in the hope I could use it when I was in hospital or something - but that idea didn't go anywhere as I ended up not being able (strong enough) to practice then. Now I think I'll get the John Scott DVD too.

Last week I ended up going to the university health clinic and seeing the doctor. Hadn't seen her since I started my treatment last year so she was pleased to see me and catch up on how it'd all been. But - because my cough had been hanging around and getting worse, I felt I needed to get it checked out. Had a chest x-ray and turns out I've got (or had) bronchitis! Great!! Onto the antibiotics again and now (4 days later) am feeling much better. Not coughing myself sick at night etc anymore !!!

And ... life is good :)

rushing ...

I smiled when I read yoga gumbo's blog this morning - why am I online! Well, I'm online coz I'm at work and since I've achieved something I have been struggling with for ages (a 3-level CSS navigation menu) I've got a bit of space to hang out! But I'm flying to Sydney tomorrow. Haven't done any packing yet, and I'm still intending to go to choir practice tonight. So before I go out tonight I've got to somehow pack without my cat seeing me doing this! Not easy - specially when I have no idea what I'm going to take! Then go off to choir practice 45 minutes drive away. Then tomorrow morning I've got to get Miss Mieke Pussycat into her carry-box, leave the house by 7am, drop said pussycat off at the pet motel, and then get to the airport parking place by 8.30am. A big ask ... So I really better not imagine I can get my laptop out at home tonight!

Despite all my whinging about colds (which I've still got!) I managed to get to yoga on the weekend. So glad I did - it was wonderful. Haven't managed to do any more since then because I'm still not feeling 100% and am doing my best to 'be sensible' and look after myself. But I'm taking my mat with me to Sydney (well, country NSW) and hope to be able to give it a go down there.

I'm also feeling a bit ashamed of myself, making such a big deal about what is really, just a cold, albeit a nasty one. I think I need to try and ease myself back from this health obsession! I know it's all understandable and everything, but still - I need to get a reality check about what I'm getting upset about! Save it up for something that deserves being upset about!

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.

another new start!

Seem to be making a habit of these ... sigh!

So, I'm back at work again, trying to take it easy and not do too much. And trying very hard to be a bit more careful about hygiene etc. Never was a great one for that - always happy to pick food up off (my) floor and eat it! But all this has given me a bit of a fright - on Sunday I cut myself in the kitchen and got in a complete panic that some of the staph bugs that live all over our skins could get into me again via the cut! Rushed around madly looking for disinfectant etc ... Touch wood I seem to be OK (it is Thursday after all now) from that. But it was a bit of a wake-up call to take more care and be more aware for a while, till hopefully my immune system comes back up.

Went to choir practice last night for the first time (since last July). That was lovely ... I was actually a bit tired and could have done with not having to drive into Brisbane. But I really wanted to get the music and just see everyone again. I only stayed till 8.30, and was home and in bed by 9.30 so I guess it wasn't too bad!

And so to yoga ... am going back to class on Saturday again - that's what I mean about another new start! I've been missing for 2 weeks from class so it'll be nice to go back again, and start again from the beginning. Not that I had got past 'the beginning' anyway, so ...

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 ... :)

just standing ...

Well, I went to class on the weekend. I was pretty tired the whole weekend, but decided I would go anyway. I'm glad I did. I told Richard I thought I'd start off (again!) by just doing standing, as he had suggested the previous time I started again! He was pleased - said he always suggests that to people who are starting back after a long illness (or whatever) but very few people would do that! (good mark to me!!)

Anyway, that's what I did, and it was good. I was glad. I'm going to carry on that way for a few weeks and gradually build up again.

Coz actually I was quite tired this weekend ... I'd been tired the previous one, the first one after coming back to work, and felt fine about that. But this time I wasn't expecting it and so was a bit disappointed! However, I expect I'm suffering from a case of unrealistic expectations about my progress! In that I'm thinking I'm already fully recovered! Obviously not the case ... Just have to keep reminding myself to take it one step at a time!

(from a not very patient person!)