Ive not forgotten this place, and I apologise to my friends and family who stop by to check up on me… Ive just not felt like posting, since either Ive not been feeling well, or Ive been feeling well enough to not want to dwell on it all.
But its been two weeks since my last post, and a fair bit has happened since then, so I shall fill you in.
Recovery from first chemo cycle.
Well, the recovery went as expected. I was feeling crappy – tired/sore/despondent/grumpy/sad/lonely/flat/blah (best word for describing ones self – “I feel blah!”
The injections were ok – sometimes they didnt want to go in, so Nic had to push harder to get through the second layer of skin/fat? Most of the time it didnt hurt, but he was still unsure. Once it hurt, so it took three times to get it in a suitable spot – unfortunately, those needles are only really meant for one insertion, but its ok, cos the third time didnt hurt at all.
It usually takes about a minute to give me the injection. We spoke to a nurse about this, and she insisted it shouldnt take that long, it should be in, push in the drug, and out – nice and fast… but for me, I prefer it to be slower – I can feel the liquid getting pushed into me, Im more sensitive I suppose – or I pay too much attention. Anyway.
Only once did I bruise – obviously Nic went through a blood vessel on the way in, and I didnt put enough pressure on the site afterwards, cos I had a nice bruise on my tummy about the size of a 10cent piece – its still there, but its fading.
On the Wednesday week after chemo, my blood was tested – my results were quite low still – they were waiting for them to drop, naturally, and then increase sharply because of the drug – they were looking at the White Cell count (WC), and the CD38 count (Stem Cell count)…. minimum for collection was WC = 1, SC = 10. Mine were above that, but they needed to know if I was going down or up, so I went in the next day – they were even lower, so obviously I was going down… No more tests were scheduled until the Sunday, were I would have to go into the Oncology ward upstairs, and one of the regular week nurses was to come in and test me.
So a few days break from the hospital! YAY!
I already knew by Saturday that the injections were working.
I woke with a painful hip, as if I had slept on it wrong – I woke up, pottered out to the loungeroom, lay down and tried to stretch it out (I did not want Nic stumbling out of bed and tripping over me on the bedroom floor at 3am!). That didnt help, so I took some painkillers and went back to bed.
That day the pain grew steadily worse – spreading out across the back of my hips, jarring me to a painful halt when I tried to walk, the back of my neck and skull were hurting so badly – painkillers were my new best friend.
Sunday came, we went in and got the test – we hung around waiting for the results, chatting to another lady in there, whose levels seem intent on not co-operating – it was very quite depressing listening to her – she practically said that if this chemo treatment didnt work this time (she was a relapse patient as well), then she wasnt having another one! Im so used to being sure Im going to live, that its hard for me to hear people defeated and willing to stop – Im not making judgments, its just hard.
Luckily for me, my results were fantastic, and I shocked the nurses. Remembering they needed a minimum of WC – 1 & SC – 10 – Mine were WC-11 & SC-183. The nurse who came in to do the collect even admitted she wasnt expected to collect from me for another few days! I was glad it was then though – even though I just wanted to go home. It was a quiet room, and I was relaxed.
I should explain what a stem cell collect, in this matter, entails.
Basically, I have the port/line that has two catheter lines running into my body – I ‘think’ they go in and stop just above my heart. The reason I have two is to facilitate the taking out and putting back in, of my blood, in a cyclic system. The injections they gave me makes my bone marrow overstimulate, producing stem cells, which normally go on to form the main building blocks of your system (red cells, white cells etc). Because it is overstimulated, the excess stem cells get pushed into your blood, and so can be collected – and because the injections and the bone marrow are working constantly, the blood they take from me wont necessarily be lacking in stem cells – so its not as if they are draining me of all my goodness.
The machine basically takes blood out, spins it, the stem cells rise to the top, and then are collected, and then the ‘old’ blood gets put back into me – a continuous process until they get enough. They needed about 250mls and a count of 10 for the stem cells within that – thats to the power of 10, so basically 10million stem cells – enough for two transplants back to me later on. Its a mathematical calculation, one checked by the nurse, and then later by the lab.
I sat on that machine for 6hrs – remember, I cant get off, so I had to utilize the commode chair (having no dignity is not good for a 24yo – but its one reason I prefered being in an empty room rather than the normal busy day ward Im usually treated in)… but 6hrs later, after the nurse ensured we had more than enough mls for the lab, and she would ring me with the results the next day – there was a slight chance I might have to come in again and sit for a bit longer if the count wasnt high enough.
BUT we could stop the injections!!! YAY!!!!!!!!!!!!
The whole process was quite painless – I have an odd sensitivity to feeling the saline and such that they put into the port – theres not much I can do about it other than drink something sweet when its going in, in an attempt to disguise the taste – its the same for the anti-nauseas – I can taste them… yucky.
Anyway, the next day I was feeling good and I got the call from the nurse saying that I needn’t come in, for the count was 23!!!!!!!! Thats ridiculous even for me! So they managed to collect (harvest 
), enough stem cells for 5 transfusions!! I was very impressed with myself.
And so was my doctor when I saw him a few days later. He said “Results like those get us hematologists very excited” – I remember during the last chemo, when I was on the single injections, my white cell count got to 18, and he said to me “Im in awe of your bone marrow at the moment”…. I think it helps that Im fairly young and healthy despite all this. And Ive got many people sending me love and healing vibes – it all helps Im sure 
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So, I learnt the same day as my doctors appointment, as I was having my port dressing redone (it has to be done once a week), that instead of a 21 day cycle, its only going to be 20days – I questioned it, and the head nurse came in and told me that she couldve put me on the next day for chemo if she had wanted, because my bloods were so good, but she believed that a week’s break after stem cell collection was good for morale.
So I have chemo tomorrow – eep! and in the afternoon! Normally I go in first thing in the morning, and I dont know why its different now – maybe theyve got more people – maybe its cos Im always late in the mornings, but in the afternoon, I wont be able to be late, because they close at a certain time, and whilst Im sure they wont kick me out mid/late treatment, it will be a squeeze. Im not sure I like the idea of going in later – it means Ive got to wake up for my daily dose of tablets, then hang around for a few hours, then go in – at least in the mornings I would get my anti-nausea earlier, but with this, if I dont take anti-nauseas, waiting instead for the ones they will give me, I dont know if I will make it to the hospital – but theyve mentioned they dont like me taking anti-nauseas at home before treatment…. I suppose I shall have to ask….
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My hair started falling out properly last Thursday. Ive been having a few hairs go here and there, and my head had started to ache, but it came out, not in clumps exactly, but a large amount, with a good collection of strands from certain areas – ok – in small clumps – its not completely noticeable yet – the spot at my part at the front is getting very thin – and ive taken to wearing a bandanna, if only to confine the falling hair to my back, rather than to my front, sides and face. The pain has been given a name, by my cousin who is going through cancer treatment at teh moment as well – “follicle pain” – its true – its the follicles that hurt – even just pulling my bandanna down at the front hurts.
Ive gone through this before, but its still very distressing having it fall out – I just keep brushing it hoping it will hurry up and just fall out – why dont I just cut it? I dont have that strength, and Im sure it will be a messy process anyway.
And yes, its hair everywhere – its unnerving pulling your underpants down to find hair falling out down there as well. I put a sticky cover over my port the other night to have a shower, and I didnt realise it had caught some of my underarm stubble until I went to pull it off, and whilst it was not waxing exactly, a fair amount of hair came away as well – so whilst it may not ‘fall’ out, it is loosened enough to come out easily.
The worse thing about losing hair, constantly, is finding it on your pillow in the morning, and all over your night-shirt, and the sheets – and having to remove it, piece by piece, just to not feel like a woolly mammoth – and it doesnt look good in public either – shedding like a fluffy cat! yuck! I keep imagining that I will wake up one morning, sit up, and all of my hair will just stay on the pillow – I dont know exactly how I would feel if that happened – but something the nurse mentioned to me at the beginning, about one day the hair will be there, and one day it wont, keeps reminding me of this – if it happens, I will let you know how I feel.
At least hopefully this time when it grows back, it will be slightly lighter
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Ok – my office is getting hot again, so Im going to take leave, read over what Ive written and perhaps fill in some blanks.
You may not hear from me for a few days – its going to be very hot here the next few days, so I will be crashed out on the couch before and after treatment.
xox
