January 21, 2008 at 4:52 pm (Spirituality)
I had a wolf/bear/fox with me the other day – I woke up and there he was – almost two of them, wolf and bear/cub but the wolf was more prevalant… they sat with me all day on thurs or fri – cant remember…
very nice gorgeous creatures – much comfort
i dont know if they ‘belong’ to me, but would be interested to know if anyone wants to claim them as their own.
January 21, 2008 at 3:29 pm (Family, Treatment, recovery)
well, im still alive.
the first thing is that after the 2nd day, i felt so FULL – like i was so full of fluid and drugs it literally felt like i was drowning in it. i was ok by about 4am on friday.
day 3 – the saline solution affects me.. which is odd cos it should be nuetral – the steroids are the same tho – and anti-nausea- makes me sick.. might be the speed they give it…
i still have my hair
sunday – first injection – 8am – so that when i start my 9am blood appointments this week it will be done before we go…i passed out – Nic was terrified i think
i take my lazaropam now which calms me down – the nurses reckon it was a stress/anxiety reaction
2nd injection was better -sobbed quietly before submitting to the lazaropam, felt better afterwards
from now on – injections are to be given in bed – twice daily to stimulate bone marrow
my legs are so sore
and i have no stamina – even sentences and paragraphs are beyond me
i cant walk from one end of my house to another with a pause less i lose momentum and collapse… my leg muscles hurt like ive been rock climbing – my chest hurts with heart palpatations – or not, just that im more aware of it, but i feel tight
the port is getting better – not so sore
ok – going now – tired – have a lil bit of work to do before i finish… may take a few attempts.
x
January 16, 2008 at 9:28 pm (Doctors, Explanations, Family, Treatment, recovery)
fuddled and chemo brain – slight nausea is threatening at the moment so apologies for apost that will be written with my eyes mostly closed.
went in – meant to start straight away, but mum wanted to see doctor first – i wasnt fussed – i think that made everythning run late, but oh well. he came, talked about fertility preservation more and said that generally he has a 2-3 week wait that he is happy with from date of diagnosis, so the IVF egg collection was out of the picture now. I did remind him that its been over 6weeks since the scan.
There is still chance for drug that restricts ovary functions – cant remember name – that is an injection once every 3 months…. still experimental…. Dr Bowtie gives me a 50/50 chance anyway, which is pretty good, and since im young it should be ok.
i had the option of waiting chemo one more week and seeing fertility specialist, but i decided to just go ahead with it – id psyched myself up for it, so it should happen now
had lots of fluid, then the steroid and the anti nausea – geez that was not nice – tasted terrible
so the nurse got me a special tablet – basically a relaxant so i went drowsy and relaxed.. i could deal with that… im getting it each time now im told.
i was there was 9am until about 3pm
got home
slept
ate
hopped on computer
my brain is fried, and the more i try to work it, pay attention to things that are moving and require my attention, such as my fingers, people etc, I feel more nauseous.
Im on a BIG bag of drugs, and that doesnt include my injections yet! just lots of drugs to ensure the chemo doesnt irritate my bladder, and my gut, and anti fungals and antibacterials etc etc etc lots and lots of drugs
i need some sleep
yes
this is the brain working of a chemo patient.
January 15, 2008 at 8:59 pm (Doctors, Explanations, Treatment, Venting)
well – I think I have found a rival for the pain felt by the bone marrow test… the insertion of the port in my chest… again, the sedative didnt work, and the local anesthetic wasnt working as deeply as they hoped obviously. but i get ahead of myself
I still cant remember exactly what the port is called – a double something or other (arterial venous something)- i will promise to note it down tomorrow – ahh tomorrow, my first day of chemo – again… hmmm
Ok – the port. I was due at the hospital at 11am, and on the way I admitted I was nervous, there was no point pretending that I wasnt. As soon as I got the the short stay unit, I was informed that they wanted me in there as quickly as possible – I think I was fast-tracked.
So I signed my admission forms, got dressed into the funky robes that tie at the back and have your butt hanging out (note: wear black underwear on all trips to the hospital not bright blue!) and was wheeled out towards the surgery room by about 11.30 or so.
We waited around (the nurses and I) in the surgery room for the doctor and Im pretty sure it all started at about 12.15… the nurses were nice and I tried to make small chat, but I was nervous. My PICC line going into my arm last time was not pleasant, but it was almost bearable because the pain was in my arm – this was going to be in my chest and whilst I hoped it wouldnt be too bad since my chest was still partly numb, I knew it was only superficially so and wouldnt make much of a difference in this case.
Since they needed to be sure that the catheter was going into the correct place, I was under a big xray machine and everyone was wearing those protective vests. There were 4 big screens/monitors that showed my blood pressure which was to be taken automatically every 15mins, and my heart rate was being constantly monitored by the little thing they stick on the end of your finger – that stayed regularly at about 96 before it all started. I met the doctor, who the entire time called me the wrong name, signed the consent form and then they started.
The gown was pulled down (no point in being modest about my breast hanging out now – but OH it was FREEZING!), and the nurse/assistant had a student with them who was to do the cleaning of the area… they firstly had to take the dressing off my newly clean and healing scar from my surgery – apparently they needed to find the vein in that area… they used alcoholic swabs obviously to sterilize the area, and FUCK! did that hurt!!!!! Yes, the pain started early, but I could handle the stinging.
Next I had to lie with my head towards the left, and they placed a blue sterile sheet over my face and chest, with a sticky, presumably clear, panel over the area they were working on. I had a small, maybe A4 size, hole created for me to look out of (and so they could look in on me) towards the left and that was it – luckily for them, I was not claustrophobic.
Now – they apparently gave me local anesthetic, and I dont know whether that was what hurt so much, or whether it was what they did soon afterwards, but it literally felt like someone was shoving a needle straight down into my nerve along my collarbone. The doctor was calmly apologizing and telling me it was going to be ok, but either they didnt wait for it to start working properly, or they didnt use enough, or my body is just stubborn, because alot of what followed hurt.
I know he kept asking for more local anesthetic, especially when they went along the collarbone area. Im not exactly sure what the process was, but I know they made an incision up the top, about 2inches out from my center and about 1inch below my collarbone, and THAT was what hurt the most. I felt the tugging and the pushing, and I know the doctor gave me some sedative, because I started to feel more relaxed and I really wish it had worked better because I honestly would have prefered to just be knocked out for this. I do remember crying, sobbing and the nurses peering in on me looking very worried, telling me it wouldnt be much longer, and at one point the tugging was so hard and it hurt and the doctor kept asking for a bigger line – obviously the gentler versions were not getting through, or threading through the vein well enough.
I cried out in my mind at one point – I just couldnt handle it. It was so painful, and so heart hurting – I was stressed, sore, now in more pain, and I was all alone, and it just didnt feel like it was going to stop. I desperately wanted one of the nurses to hold my hand, and it is almost impossible to practice deep breathing and calming techniques when your physical body is in so much pain – constant dull ache I can handle, but not sharp unexpected searing pain.
And the worst thing about this all was that I could feel the line going into the cavity in the center of my chest, and I could feel it – it was something I had last time, because pretty much thats what happens – a line gets inserted into just above your heart, to ensure the drugs are dispersed quicker. But I could feel it there, and my body didnt like it and I tried to tell the doctor that I could feel it IN my chest, but he thought I meant there wasnt enough local… no UNDER my sternum! I think I need to learn my anatomy better so I can inform the doctors better.
Anyway, FINALLY it was over, just a few more stitches, which the student did I guess since the doctor was instructing – unfortunately for the poor student, I felt the third one on my breast. I think I dumbfounded the doctor because I was so sensitive to it all.
I was slid back onto the trolley bed to be taken back to recover and as I was wheeled out one of the nurses commented on my red splotchy face and asked if it was a reaction to the drugs, or whether it was my natural reaction to crying – I hate my red splotchy face after crying so it was the last thing I wanted to hear!
I was taken back to the recovery section of the short stay center, and was given lunch and some pain killers – when asked what i wanted for lunch my response was “Panadol! and maybe a hot milo”
I asked for Nic to come in at a bit later, and mum came in as well – I was very very sore, and not liking it much at all. It was all fucked up.
I managed to get a little bit of sleep, and eventually felt up to going home.
And here I am.
Basically the port enters at about 1inch above my right nipple, and inside the vein/under the skin, curves up and then down towards my heart/center. On the outside, there is about 3inches of exposed tube, 2 lines, with what Im assuming are clamps near the anchor which is stitched onto my skin, and at the end of the lines are plugs – this is where they plug me into the drips – and where they take blood from – one is red and one is blue – obviously one is for putting things in and one is for taking things out – not sure which is which yet. And its all covered by a clear waterproof dressing – which unfortunately also covers my nipple… why is this unfortunate? Well, the dressing needs to be changed each week, and getting an arm wax each week was bad enough for my PICC line – but a breast wax? OUCH!!!
The two lines curl up under my arm – which poses the question – who the HELL decided on the location!? I cant very comfortably wear a bra now, and whilst it may be discrete and not very noticeable under clothes, once I lose my hair, its going to be slightly obvious that Im going through chemo, so I really would not have minded the plugs coming out near my neck… this way Ive got the discomfort of trying to put clothes on over the top, and also having to wear a top that has some sort of opening near my armpit on treatment days so its easier to access the ports! A man must have designed this!!!!
In addition, because I cant get it wet, showers are made more difficult, and I can only sit in a bath that comes up to my waist because I dont want to get the plugs wet by sitting in water of any higher level….
grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
this is fucked.
~~~~
So today Im sore, but not as bad as expected – most of which is thanks to all the healing vibes and love Ive been sent by all my friends and family.
And tomorrow I have my first chemo session… 9am… not even a reasonable hour! I must admit, I usually sleep in until about then – especially after chemo, so I dont know how Im going to make it to chemo on Thurs and Fri – with lots of anti-nausea and sick bags Im sure.
Im going to sign off now, since my right arm is quite sore and typing at the computer is making it ache more.
January 13, 2008 at 10:32 pm (Explanations, Treatment)
Bone Marrow Test
Right – I must admit Ive been putting off writing this one – I was worried I would forget the details (you will know why soon), but I didnt have to worry about that in the end…
So – Ive explained the concept and process of a bone marrow test.
I got there early, dad took Nic and I in, and when the nurse stuck her head around and asked if I wanted to come through, I said no – half jokingly.
I didnt realise they needed to take bloods for general tests and virals – so I hadn’t prepared by drinking lots… They also needed a viable catheter for the sedative to be administered through…
ARGH! Now I know what chemo veins are like! My left arm wouldnt co-operate, and my generally good right arm wasnt either… The veins were there, but they kept disappearing – and cos I was relatively dehydrated, it was hurting! So anyway, another nurse came and tried the very VERY tender spot just above my wrist on my right side.. it kept stinging even when it was in, but I sucked it up cos it needed to be there and it wasnt too bad in relation to what was going to happen.
So the doctor had introduced himself and Id signed the consent form… by dad had disappeared by this point – not liking blood and seeing his daughter in pain, but I joined hubby at the bed in the clinic and whilst he wouldve been allowed to stay, I didnt want him to – I think he was a bit hurt, but it was something I just wanted to do by myself – keep the pain to myself… In the end Im kinda glad that I did.
The sedative went in, and the deal with the sedative is that whilst you still experience everything, you will forget it afterwards – it makes you drowsy, so many people sleep through it.
I woke up – I remember sobbing uncontrollably, and I remember the pain searing down my hip – the doctor called a nurse in, who came in, held my hand, wiped my tears and spoke to me during it. Then I went to sleep and woke up groggy a bit later.
I wonder whether it would’ve been better for me NOT to have the sedative and been slightly more in control of myself. Whilst I know no-one will blame me for my reaction, I prefer to be in control. Its not about embarrassment, or feeling or appearing weak – its about knowing my own strength I suppose. And if I’m completely honest, it is about appearing strong. I know people will think its crazy – why put yourself through pain if you dont need to? But in the end, I went through the pain anyway, so what was the point?
I dont know – its something I will have to work through I suppose.
The easiest way I can explain it is this – I have no control over what is happening, my treatment, the effects etc, so in the areas that I am ABLE to have control, it is empowering to think I have a choice – that includes my outlook and attitude during treatment as well.
Anyway, back to the test – the nurse mentioned later that the sedative probably didnt work because my heart rate got up to over 100, because I was so stressed, so I was chewing through the sedative like there was no tomorrow – hence it wore off.
When I woke up, I ate some lunch (the clerk/orderly there is great – makes fantastic hot milos!), and waited for Nic and dad to come back… I got my dressing on my neck changed – the left upper part of my chest is still numb – well, it switches from numb to highly sensitive, so we are assuming there is some nerve damage which will hopefully come back. So the dressing change was fine because I couldnt feel anything anyway. It was the first time the dressing had come off since the surgery – it apparently looks ok, but it will need to stay covered for a bit longer.
Then it was time to go – we wandered out – dad went ahead to bring the car around to the pick up zone out the front. As we walked out, I could smell cigarette smoke – something I LOATHE!!! Especially at hospitals! and I should mention my hospital has been a smoke free campus for about 12-18months by now.
We walked out, I smelt the smoke, and I, thinking I was compeltely lucid, but realising now that I was NOT, exclaimed:
“I can smell cigarette smoke! Who the FUCK is smoking?! “
I looked over and there was a guy sitting at the rest stop/waiting bench outside with the cigarette curled under his hand, trying to be inconspicuous, with a MASSIVE No Smoking sign behind him.
I shook my head and, I thought, lowered my voice:
“For fucks suck mate, its a fucking no smoking zone”
Nic at this point starting giggling, and thinking he was giggling at me, said:
“What?! Theres a fucking huge no smoking sign right behind me! And he cant have a go at me cos Im sedated!”
hehehehehehehehehehehe
Apparently my voice was not as quiet as Id hoped, and the reason Nic started giggling was because the guy smoking had very clearly heard me and looked so very shocked that anyone had said anything. By the time I had gotten into the car, apparently someone else had gone up to talk to him… the nurses were rather amused by this when I told them the next day, but I had their full support! 
~~~~
So the pain in my hip was there for a good few days – its really only been really today that Ive not had any pain – except for the fact that I tried to prove to Nic that I was ok to drive, with my neck and all, but I over-strained it, still cant drive, and my neck and shoulder are sooooooooooooooo very sore now – I cant stay at the computer much at all.
We wont get the bone marrow results back until tomorrow when I have to get the port in – and even though I wont find out the results, because I will have to see a doctor to tell me them – in which case it will be Wednesday before my first chemo – fingers crossed it SHOULD be clear! The results will slightly affect my treatment plan, which ive written out below, based on everything being as expedient and good as possible
~~~~
Treatment Plan
Monday - Port is inserted – I cant remember the exact name of it, but I will find out for you – basically its TWO catheter lines – one for giving me stuff (chemo etc), one for taking stuff out (like blood etc). This will be inserted into my chest – hopefully my left side, since I cant feel anything at the moment anyway!
Tuesday - rest
Wednesday - Day 1/21 – First Day of first chemo cycle – recipe Hi-DiCE (this is the chemo drug I am to be given over three consecutive days.)
Thursday - Day 2/21 – Second Day of first chemo cycle – Hi-DiCE
Friday - Day 3/21 – Third Day of first chemo cycle – HiDiCE
Chemo cycles – each chemotherapy treatment has whats called cycles – each recipe/drug combination has different cycle lengths, requirements for the cycles etc. My last one was recipe ABVD, and it was a 28day cycle, but I had two doses during that time (labelled A & B) that were 14 days apart.
The first chemo I am to receive this time has a 21day cycle. Each cycle starts from the 1st day of your chemo drugs being administered, until the next time/lot/dose. So even though HiDiCE requires three consecutive days of drugs, they are all part of the same dosage, so its 21 days from the first drug day, until the day prior to the following treatment day (so the following treatment day would be day 22) – I hope that makes sense.
Sunday - Day 5/21 – Start twice daily injections of G-CSF (Its either filgrastim or pegylated filgrastim) to stimulate bone marrow production – see HERE for a good description. This is dependent on if my bone marrow test comes back clear – if it does not, then the injections are on the back of the second lot of chemo.
Basically, this drug will stimulate my bone marrow to produce more stem cells, because chemotherapy kills all rapidly dividing cells in your body – this includes hair, saliva/mucus, nails, bone marrow (which is important cos thats where all your important cells are made). By stimulating the bone marrow, it produces stem cells, which, because it will be overstimulated, and wont need them all in the marrow, will be pushed out into the blood system, will be able to be ‘harvested’ when there is a high enough count, stored, and then given back to me after the chemo is done. Like my own self-bone marrow transplant!
From about Thursday onwards I will have daily blood tests to keep an eye on my stem cell count – once it reaches a certain level, I will be hooked up to a machine which will drain me of blood (not really), seperate and collect the stem cells, and pump the rest of the blood back into me again – because the bone marrow will be constantly producing the cells anyway, I wont become low on them. Once they collect enough for two transplants, which may take a few days!, I wont have to do the injections anymore, and thats that until the next chemo dose.
Weds - Day 22/Day 1 – Day 1/21 of SECOND chemo cycle - Hi-DiCE
Thurs - Day 2 – Day 2/21 of SECOND chemo cycle - Hi-DiCE
Weds - Day 3 – Day 3/21 of SECOND chemo cycle - Hi-DiCE
I will be given the bone marrow stimulant again, but it should be a one off injection, just to give my system a boost and help my blood counts recover. During the next 2.5weeks, I will also have a PET scan to see whether the cancer is gone yet or not. If it is, then I go directly onto the BEAM chemo – if the scan shows the cancer is still present, then I have another 21 day cycle of Hi-DiCE or they change the recipe.
Understanding that the PET scan is clear:
6 consecutive days of BEAM chemo.
THEN they will give me back my stem cells – similar to a blood transfusion.
Im not exactly sure of the days/timing of all this. Will get back to you Im sure.
~~~~
So I will probably be bald this time next week – ah well, I get to see if I have a good looking bald head or not, and I look good in bandannas and hats, so its ok.
~~~~
Im going to sign off here – my neck is getting really sore sitting here typing, so I am going to go have a rest now.
Check back in tomorrow or Tuesday for the low down on the port.
January 8, 2008 at 11:21 pm (Explanations, Venting)
I should be more honest with you guys.
I take all my analytical data, write it up and Im sure I seem sort of ok.
Im lying – well not lying because I will break down later about all of this – probably in Nic’s arms.
How am I dealing with this?
Let me start with saying that its pretty fucking shitty – no its completely and utterly fucked up.
And what scares me the most at this time? The bone marrow test! The most painful thing I have ever had to go through – and I never want to ever again – but of course thats not going to happen now
And then theres the chemo – the feeling crap, shithouse, ALL the time. And the other worse thing about chemo? Because the drugs low your immune system, you are open to all types of infections… So basically, if you catch a cold, it could kill you. THAT is what is so fucked up about chemotherapy – yes the drugs are shit, the nausea is fucked, and so is the vomiting, losing hair and taste-buds and all saliva and bodily fluids… the fact that if all that doesn’t kill you, the infection caused by you or your husband or child or family member coughing anywhere near your direction.
THAT is why cancer patients dont go out much – they may really really want company, but a trip to the shopping center might end up as a trip to the emergency department! And as much as they love you and your curry nights, apart from the fact that they probably cant taste a thing, its all about self-preservation and staying away from running noses/eyes and sweaty beings.
So yes, whilst I may seem fine right now – and partly I am – Im positive I will come out of this ok, and I have hopes that my good fortune of fairly easy treatment will carry onto this treatment… Deep down, the reality of going back to that stage of being the lowest youve ever been – of seriously just wanting to stop it all – of having to count up before you can count down the number of treatments, of having no friends, no contact, of feeling unloved and ugly and sick and disgusting ALL THE TIME – of not being able to even have a decent shower because I cant get the port/line wet, of having to ask for help shaving my own legs (and thats when I feel up to it), and feeling like there is no sunshine on the horizon….
THAT is what I’m not looking forward to – because whilst I know last time was good compared to some journeys – if that was good, and this is going to be worse, Im frightened.
January 8, 2008 at 11:00 pm (Doctors, Explanations, Family, Friends, Treatment)
Tags: bone marrow test, cancer, chemotherapy, diagnosis, Doctors, hospital, pain
I saw the doctor today – not my doctor, but the guy looking after my doctors patients. Im sure he is a really nice guy, but Im slightly attached to my own Dr Bowtie, and his mannerisms, and he knows me, knows what he’s told me before and knows my mannerisms.
I think this poor doctor wasn’t ready for the fact that I was so seemingly untouched and at ease with everything he was telling us. Ive had cancer before, I knew it was going to be it again, so *shrug*. Dr Bowtie had described a few scenarios with me when the PET scan came back positive, so I knew basically what to expect – even the dreaded bone marrow test (this is going to have a post all of its own, so stayed tuned, if you know nothing of them).
The doctor was running early, so my mum was a few minutes late, which made her feel harassed on top of being stressed already. It was a pretty standard meeting – going through whats most likely going to happen. I must say though, the one thing about my doctor, and I know its because he is my doctor, I am his patient and he knows whats going on, what he does etc, but he really does have the answers to most questions you ask of him. AND he writes things down, explains them fully so you can make the correct option for yourself, if you have an option.
The one major decision we made, and Nic and I discussed this earlier, was regarding fertility.
There were a few options:
1. I could have IVF drugs for a full cycle, then they harvest some eggs
Pros: More reliable form of “securing” fertility
Cons: I would have to do a full cycle, and since Im in the middle of one right now, that would entail waiting two weeks, starting the drugs, and then after that 6 week period, THEN starting chemo
2. I could have surgery, which this doctor didnt know anything about, whereby a section of ovary is taken out and frozen.
Pros: Quicker method
Cons: Didnt sound too reassuring, and like it may take a lot of time to organise. There has been apparently only one known case of this becoming a baby, and the fill in doctor didnt know of anyone in my state who does it – well obviously there must be someone for my normal doctor to recommend it.
3. Apparently there are some extra drugs that they can add to the mix/recipe, that diverts blood supply to the ovaries, in the hope that the chemo drugs wont affect them as badly.
Pros: I suppose I wouldnt have to do anything extra, just one extra drug
Cons: My thoughts were that this lack of blood must surely affect the health of them anyway – any blood is better than reduced blood. And it only takes one chemo tainted blood cell to get in there really
4. No fertility treatment or precautions at all and just get on with treatment
Pros: My husband gets a wife with only Stage 3 cancer, rather than anything worse caused by waiting longer for any other treatments.
Cons: I may become infertile after treatment.
We chose option Number 4.
I dont know if Im being very selfish here, although I think I have a right to, that there is no point looking after possible future children, if there is a chance I may not live to even have the prospect of having them. Nic has told me he would prefer to have an alive and healthy wife, and no children, than no wife and no children. I think I would prefer to be alive and still have the option of trying, rather than be dead and not.
So parentals – please dont be too disappointed at the decision we made to not to secure future grandchildren. And if you are disappointed, do not talk to me about it, because I am NOT in the mood to answer any more questions about fertility (another chapter on that subject to be written – stay tuned).
~~~~
There is a girl, same age as I, same Hodgkins, that Ive befriended and chatted to during my time volunteering at the hospital. She was there yesterday, as I had a feeling she would be.
Her mother, father and she looked horrified to see me, with my neck padded up with a dressing, and wanted to know if everything would be ok. I think I was their little guiding light to life beyond chemo, with healthy appearance, good attitude etc, so she was not happy to hear about me relapsing. Of course, there is nothing I can do about that, and there is no reason why me relapsing should indicate that she will to.
Just a mini rant – I used to take responsibility for others people’s reactions to me – even before I got cancer the first time. During me telling people about cancer the 1st time around, I did feel bad because I was blunt, brutal and a bit cut throat about it all. However, Im over it – I cannot handle how someone else reacts to my actions. So long as I know that I do not purposefully, or retrospectively ignorantly, insult, or try to emotionally harm someone with my words and actions, then I am happy within myself. I cannot control you, I can only control myself, and I have enough self respect and self belief to get me through whatever I need to get through, and to be the best person I can be at all times (disclaimer: minus the obvious days when I feel like shit, and I apologize in advance for those).
So, if you are reading this my friend, that little rant was not directed at you specifically – but you did make me question and check my actions – I dont think anything to do with me will affect your chances of making a full and lasting remission.
~~~~~
Back to Diagnosis
Ive just realised that I have not officially given you the diagnosis.
Classical Hodgkins Lymphoma – Nodular Sclerosing
- Stage 3 (as per PET)
Treatment:
- Bone Marrow Test
- Port put in ASAP
- If bone marrow test is clear: 2 cycles (21 days) of dICE chemotherapy recipe – stimulated bone marrow/stem cells harvested during 1st cycle.
- PET scan after 2 cycles
- If clear: one cycle of BEAM chemotherapy (by all accounts, hard core shit) and then I get the stem cells given back to me – like my own bone marrow transplant.
If things dont come back clear, then it gets a little bit more complicated, and a little bit longer.
My last chemotherapy cycle was 14 days – chemotherapy was once a fortnight.
This time, the chemotherapy cycle is 21days, but the actual drugs are given over a 3 consecutive day period. The BEAM however, is everyday for 6 days.
The way they stimulated bone marrow last time, in order to boost my white cell count, therefore my immune system, was giving me a drug to inject the day after chemo. It was shit – because your bone marrow is made from your bone, this stuff makes your bones ache sooooo badly, you just want to die to make it stop – you curl up into a hot, sweating ball of agony. Your skull down to your toes ache like you’ve just jumped off a cliff and landed on flat stone 20 meters down, and you have to live through it. You cant move without it aching, yet lying still doesn’t help either because your under-worked, wasting-away muscles are screaming out to be worked. And for a fairly active person, that inability, uncompromising pain is the worst thing – wanting to go out but having migraines and light sensitivity, and just being able to make it from the bed to the lounge is a struggle, getting out of bed by yourself is a miracle! Making it to the letterbox was often the highlight of my few days after that injection.
And Nic had to give it to me. Pinch some fat, put the point of the needle at the bottom so it doesnt scrape as it goes in, at a 45 degree angle upwards – put it in a little bit, pull the syringe back, if there is blood, try another spot – it cant go into blood vessels. Once your in, slowly, ever so slowly, push the syringe so it doesn’t hurt so bad as it goes in, and just in case I faint and fall over. Or Nic – Nic has a fear of needles – he’s fine when they are in, but watching them go in or out is his weakness. And the poor love almost blacked out after the first effort. He still doesn’t like it, even after 6months of giving me needles, rather, he probably hates it even more.
So – thats the drugs – thats the basic technical information. We are yet to see the emotional and physical effects it will have on me. I often wonder how quickly my hair will come out this time – whether I will have to document it – and whether I will be able to handle waking up in the morning to find not a few or handful of hairs on my pillow, but my entire head of hair… Im not going to think about that right now, because as superficial as it sounds, Im not ready to cry about that just yet. Give me a few days.
~~~~
Bone Marrow Tests
I WAS going to do this later, but now is as good as any.
It has come to my attention that many people do not know what a bone marrow test actually entails, despite EVERYONE knowing how painful they are apparently (and feeling ok with telling ME that).
What they are for are to collect a core sample of your bone marrow – which is located in the middle of your bone – the soft squishy bit that looks like coral held in between thick hard bone bits that you may see on the t-bone steak you eat at dinner.
How to get to that is as follows:
My first bone marrow test I did not have sedative – the reason? I was to have it on the same day, just a bit prior to my first chemotherapy dosage – so I wanted my wits about me and as little other drugs as possible. Apparently, according to the doctor today, the sedative will dull your thoughts, but you just wont remember it afterwards. hmmm not sure if I think that’ll work, but I will let you know!
Ok – so firstly – you are alone, with the person performing it. You are not allowed any family member, support person etc, because of the nature of the act. I am not sure whether its because they need sterile environment, or they just have had bad experiences where the support person has not liked seeing their loved one in so much pain that they interfere. I will ask tomorrow and remember to report back if I remember the answer.
So, you lie on the bed, on your side, back to the specialist, best position is curled into the fetal position, hugging your knees. My advice to anyone having to have this, is to ensure you get a good grip of the bed frame.
They give you a local anesthetic, make a small incision through the skin, around your hip, and then they stick a syringe into your bone and basically suck up some bone marrow. It feels as if they go through your hip, straight down into your leg bone. There are two types, and for the second one it involves basically digging into your bone marrow to get a decent core sample of the bone marrow – just imagine the feeling of someone taking a corkscrew to your skull. It FUCKING HURTS! All websites, such as this one, indicate that you may feel a sharp stinging pain as they go into the bone.
Let me tell you, if it was a sharp stinging pain, I would not have been lying there, tensed so much I was getting cramps, gripping the bed frame so tightly Im sure I left finger indents, silently, slowing drawing out the word “fffuuuuuuuuuuuucccccckkkkkk”, whilst tears streamed uncontrollably down my face. A deep deep ache and agony sets in, and you just want it to be over. I was told I needed to relax a little bit, and pull my knees up more, since she needed that to finish it. In that situation, when all you want to do is have it over and done with, and co-operating means more pain, the last thing you want to do is bring your legs up higher so they can get in deeper. Loneliness, thats what you feel – loneliness and pain. It is not nice, it fucking hurts, and I still stand by my decision that anyone who gives bone marrow tests should be made to undergo one, just so they know. I understand pragmatically that its perhaps best if they dont know, since they have a job to do, and anyone who has had one has sympathy for anyone undergoing one – and truthfully, Id prefer someone just to get it over and done with as quickly as possible without sympathetically giving me even a few moments relief.
And everybody in that clinic knew what was going on – and everytime I saw that curtain close over and that specialist walk in, my heart went out to that person.
And its not something you can share with your family. I could NOT let my loved ones see me in quite that much pain – not after the last few months and diagnosis. So I did it, quietly and bore the pain because truthfully, I’m glad its me, and not them, that has to go through this. I can handle it – I dont know if I could though, if I had to watch them go through it.
So thats a bone marrow test. I will let you know how tomorrow goes.
January 7, 2008 at 10:30 pm (Doctors, Treatment, recovery)
Tags: cancer, compassion, pain, scar, stitches, surgery, understanding
I have no idea where I was last at, but my stitches/neck are starting to really really hurt.
It might be cos I missed my last set of drugs (basic pain relief), or if its starting to fuse and heal and with my frustration at not being able to move around properly, cos its hindering my movement…
but it HURTS. Imagine this:
Youve got a phone permantly wedged between your ear and your shoulder to hold it in place – after about a week, you move it away, and then try and straighten up…
OR
youve been cut and stitched back together, with your ear permantly attached to your shoulder – no being able to stretch your neck, or turn your head properly.
THATS what it feels like, but with the added advantage of when you do move inappropriately, you are in severe headache, feeling-as-if-the-stitches-are-about-to-rip-out pain, and you have to go back to the position of head to shoulder, keeping the phone in place.. and Ive tried using that to my advantage when Im on the phone, but it doesnt work – it still hurts!
~~~~
Ive got my appointment with my doctor tomorrow. Well actually not my Doctor Bowtie – his associate who is looking after his patients whilst he is on holidays. My initial reaction was that I wanted to wait until my doctor returned. I dont want anyone else deciding my treatment. Even though Ive had a few moments of doubt, where I wonder “why wasnt this cured last time?”, “why didnt he check my results earlier?”, Ive still got a lot of respect and love for him, and I trust him implicitly. My thoughts of doubt were more directed at universal questioning, as to why I have to go through this again, because I know he was just as shocked as I was when the results came back positive.
He is a fantastic man, and I really dont want to see anyone else.
[And as a side note, Im sure he has had more profanities and doubts directed at him in his career than what I have just stated]
BUT – I spoke to my mum today, and she mentioned she had called the head nurse at my treatment centre to ask about the procedure of diagnosis, treatment plans etc whilst my doctor is away. She was reassured/informed that before he left, there was a group meeting of every patient on the books, treatment plans, possible variants on that, and in my case, a plan for every possible diagnosis outcome – so that everyone is aware what may happen. And whatever he tells me, will be exactly what my Doctor would say to me anyway.
There is always something about a persons persona and aura of course, that gives you faith in them or not… so it wont be exactly the same, and Im starting to realise I sound as if Im setting this other doctor up to fail, by judging him before I even meet him. So I will stop now, and check back in tomorrow with the report on how it all went, what the treatment is, etc.
~~~
It has come to my attention that a few people may be uncomfortable reading this and leaving comments for the world to view, or asking questions, so let me say this:
I appreciate your coming here to read this blog. I believe it is important to read and get even a small educating on what its like to go through this, even from an outsiders perspective. And I hope that you will come to be similar to my closest friends or extended family – that you will understand it from even their perspective – I want this to be not only my story and journey, but yours as well, just as it is part of my family’s.
I was going to write so that if this ever happens to you or to yours, but thats silly. Reading this will indeed give you some heads up on what may happen if a loved one, or even yourself, gets diagnosed with cancer, but I believe you dont need that to happen to get benefit from reading this, from interacting. There are so many taboo subjects in this world, and unfortunately cancer is one of them. However, the most compassionate and loving people I have ever met are those who simply try – try to understand, or just try to be there for those who need it. Those who are willing to listen, listen to all the shit bits, the inspiring bits, the tear jerking and down right frustrating bits – and at the end of the day be willing to admit that they dont understand what its like, but they are willing to be there, just to listen, to be, and to be witness.
So THAT is my hope.
And in facilitation of that hope, Ive set up an email address, keeping in mind my pseudonym, so that you may email me and ask whatever you like, tell me whatever you like – and please know, that I welcome all comments, and questions, and I dont mind in the slightest if you forward this blog to others, because maybe then there will be more understanding in this world of ours.
January 5, 2008 at 7:28 pm (Family, Spirituality, Treatment, Venting, recovery)
Tags: hallucinations, hospital, nurses, surgery, vent
the one thing that i remember most from this surgery as opposed to my last one, is that just the standard of care seems so much better… i dont know if thats just cos i was so much more stressed and sick last time, or out of it most of the time anyway that i didnt notice the nurses – but here the care just seems better – its nice to feel looked after, especially by people youve never met before.
I went to visit my cousin in hospital a few weeks ago when we were in the area, and the hospital there was horrific!! We were there for 20mins, and the phone rang off hte hook, there were patients buzzing, and there were NO staff – NO nurses, no reception, no doctors that i could see – we walked in and out 4 times and i did not see ONE staff member belonging to that oncology ward. My previous surgery was not like that, and this certainly wasnt either, because I was completely horrified at that scene.
Its amazing how good food tastes, even hospital food, including the vegetables a’la cooked-so-much-they-have-no-nutrients, when youve not eaten for over 12hours, forced. You of course know that its the very reason that youve been TOLD not to eat that makes you so aware of your hunger – but thats of little consolation when youre starving.
So I got to eat.. and it was good.
The rest of the day was spent resting, no tv cos i couldnt be bothered turning it on, and I think i instinctively knew it would keep me awake and distracted from healing sleep. Dad came back to say hi, and then when he went out to chat to mum and I awoke just as he leant over to kiss me goodbye… I woke occasionally as the nurses came to check my blood pressure and stats… I did not need nausea medication, but hte new staff nurse left the canular in just in case because in her words “knowing my luck i will take it out and you will vomit everywhere”…
They kept asking me if I was experiencing pain and on a scale of 1-10, what it was.. they never once asked what my reference for a 10 was, so I made sure I told them – “compared to a bone marrow test, with no sedative, this is about 3!” I have a high tolerance for pain – or maybe that should read that I have a high experience of pain… and whilst I understand this is there way of trying to test a patients comfort level, and a level 8 for anyone is bad whether that be compared to a bee sting or giving birth as someone’s high level of experienced pain, its still a practise that needs some further definition.
I slept, visualising all the healing energies from friends and loved ones around me, and it truly helped – even if I was hallucinating or imagining it, I personally see nothing wrong with knowing and feeling that you are loved.
Because it was the Christmas period, there were people in that ward, who normally would not be sent to that ward – so there were some interesting exchanges we heard from my room – I wont go into them, but two of hte funniest were listening to the dude next door arguing that he wanted to go home and when the nurses refused, he only wanted to go outside – and that was fine with the nurses so long as he was back by 8.30pm otherwise they would call security to go find him – there went HIS idea of sneaking off home!!
The other one I only heard, but apparently it was accompanied by a bare black bottom flashing across the shared room across the hall – a lady calling out “jack”? But it sounds fairly like “fuuuuck”? A bit sad I know, but in my muddled brain it was hilarious!
By about 4.30/5pm we decided to let me have dinner in hospital and then we would go home… dinner came and went, and the resident doctor was called to come and check me and give me some meds to take home just in case… I think around this time my blood pressure, which is normally quite low dropped to something like 85/90? or something? I will ask Nic, cos Im sure he would remember – the nurse was NOT a happy camper about that and my prospects about going home.. but I drank more, assured her it was ok and by about 8pm the resident finally rocked up and I was given a script for anti-nausea pills (same as my break through tablets last chemo round) – and the canula was taken out and I was finally allowed home at about 9pm, or 10pm?… yay!!!
Made it downstairs, and to the car, despite my mothers attempts to make me sit down and wait for my husband to get the car and to pick me up (not even 500m away)… Its all about being able to do stuff for myself whilst I feel up to it
One thing Ive learnt, and I have to keep reminding myself, is that its ok to ask for help – I get that, I really do (family, stop rolling your disbelieving eyes right now!)… BUT I know when to ask for help. I know when I need it and I know that for my own sanity, I NEED to be able to do things for myself – even if that is walking down those steps, or picking up that box, whilst I feel able. Because I was raised to be self-sufficient and able to do things for myself, and Im proud of that. I am not about to sit about and expect others to do everything for me because thats not who I am.
Yes I am proud and stubborn and pig headed sometimes – but I am determined to get through this with as much self-dignity as possible, so please just make it a bit easier for me by understanding why I get frustrated when you insist on helping. I appreciate help, I just dont appreciate being treated like I am incapable of conscious and reasonable thoughts and decisions and actions.
This is still my life, and this is how I choose to live it.
January 4, 2008 at 8:05 pm (Friends, recovery)
this should be interesting.
i just had a conversation with one of my best friends Mary – and i cant remember much of it- mostly what i said
its good to know that whilst the physical side effects of the anesthetic are different to last time, the mental ones arent… cos i cant remember much of what isaid
so it wil be interesting to read this back tomorrow or the next day
hmmm i really shouldnt blog when im feeling like this
