Friday, May 07, 2010

health, not yoga

That's what this (long) post is about :)

I've had such a 'torrid' few days not sure if that's quite the correct word but it sort of sounds good! So, can't remember if I've posted about this here before, but after I'd had the chemo 3 years ago (for the lymphoma) they wanted to collect stem cells from me so in the (hopefully very unlikely) event that it came back, I could have them transplanted back into me. But I guess my bone marrow had been damaged too much and try as they did, they just weren't able to.

So, flash forward a couple of years and there's this new drug around in trials that is supposed to 'mobilise' stem cells (see, they are created/live in your bone marrow, and all your blood cells are created there and and then migrate into your bloodstream - amazing!) And this drug is supposed to be really good at bringing the stem cells out into the bloodstream so they can be 'collected', in association with the other drug they normally use (and which didn't work or work sufficiently for me). It got passed by the US FDA and also had to go through trials here in Australia. My doctor managed to get me into the trial as a 'poor mobiliser' (!) and get the drug before it too came off trial and was approved here.

So, on Thursday of last week I had to start 5 days of self-injecting the original drug (Neupagen), then roll up to the hospital on the Monday night for the night so the trial drug could be injected into me, ready for the stem cell collection on Tuesday. If all went well, it would only take one day, but if they didn't collect enough stem cells that day I'd have to come back the next day for a second round.

What could go wrong? What didn't go wrong!!! Let's start with side effects. I think I'm a magnet for side effects! The Neupagen gave me nausea and exhaustion and back ache/bone pain. I didn't mind the bone pain - that was the stem cells forcing their way out of my hip bones, so I could forgive them that!

Of course, that weekend was the big choir camp weekend - rehearsals all day Saturday and Sunday. I managed to make it for the mornings but had to go home and collapse each afternoon. Then on the Monday night when I turned up at the hospital they couldn't find the trial drug! The nurses tried to contact my doctor but his phone was turned off! I knew where it would be - in his offices on the ground floor to which only he had the key! So, this drug had to be injected 12 hours before they start the collection (a 4 hour process). And I was spending the night in the hospital knowing that nothing could happen the next day (Tuesday). Eventually went to work on the Tuesday morning, and the side effects of 6 days of the Neupagen drug were such that I only managed to stay for a few hours before going home (the opposite direction to the hospital). There I fed the cat, collected another day's clothes, and went back to the hospital again to this time successfully have the injection.

So on Wednesday they did the first stem cell collection. It's very weird. Your blood is taken out of a vein in one arm, fed into this enormous machine with a centrifuge in it that separates the different components of your blood. And they attempt to collect only the stem cells. Then your blood is fed back into a vein in your other arm. Your whole blood supply is cycled through this machine about 3-4 times apparently. And, for this 4 hour process, you have to sit on a bed and absolutely cannot move the arm that is feeding the blood into the machine. Even leaning forward, bends the arm. I can tell you it is very difficult to sit still, only moving one arm, (and not drinking anything for obvious reasons!)

So, finally got to the end. The stem cells were couriered over to the big Brisbane hospital that stores them for people (for years), and they checked to see if enough stem cells had been collected. No, they'd got about half the amount needed! By the time I hear this it's about 4pm, and I'm told I'll have to sleep at the hospital again that night (and have a second trial drug injection). I freaked out! I'd somehow thought I could sleep at home and come back in the following morning, forgetting about the need for the injection 12 hours before. Had to drive home again, get more clothes and feed the poor bewildered little pussycat again, before driving back to hospital. (Did I say it is about an hour's drive from the hospital to my place?!)

Anyway, 2nd stem cell collection on Thursday. This was the last attempt - I think I'd only been allowed two vials (worth $8,000 each off trial, no charge on the trial!) I wasn't sure whether we'd get enough the second time. There were apparently less floating around in my blood. But still, we'd all done our best. If it didn't work, at least I'd done everything I could to get these elusive stem cells put away for a rainy day. (Or so I told myself!)

Got home yesterday evening not knowing the answer (it takes a few hours for the results to come through). But when I rang the hospital this morning it was SUCCESS!! Apparently they'd collected more the second time. And I was soo relieved! At least all the stress and illness of the past few days had been for something!!

I hadn't even mentioned the fact that I'd also had a perfect storm situation of an increasingly complicated conference website I was supposed to be doing at work, combined with a deadline told to me at the last minute of smack bang in the middle of stem cell collection! Luckily I was able to hand that over to someone else to finish off - but until I did that it did nothing for my stress levels!

And now I'm at home recovering. It's amazingly stressful being in hospital. I'm not doing anything - not going to yoga on Saturday. My platelets are very very low and I can't afford to do anything that might bruise me. But I will get some yoga (at a slower pace) in on Sunday morning when my friend Helen comes over ...

And a big Gold Star to anyone who gets to the end of this very long post !!! Looking forward to happier, more normal days and posts coming up!

3 comments:

Susan C said...

urrah! I'm glad all the effort paid off in healthy little stem cells. I hope you never need to use them, but it's good to know that they're available.

Ronni Gordon said...

What an ordeal! I'm glad you finally collected enough. When I did it, I had to go back five times, so I sure know what you mean about the hassle and anxiety.

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