The C Word

Tag: Health

4 months on – The continously delayed update

Apologies for the delay here. I guess when you’re not stuck at home or cooped up in bed or on the couch anymore it’s easy to put this kind of thing off.

More importantly, despite this blog being about my own experiences through treatment and recovery from Hodgkin’s Lymphoma, it was never supposed to be about ‘me’ as much as the general experience, so that others could take something away from it without it being too bogged down with my own individual experience. So I could have made blog posts about returning to work and all that fun/boring stuff, but it would serve this blog and its intended readers no real purpose.

That said, there still is a fair bit to update, so no more delaying. Enjoy.

Update #1: Chemo Side Effects

While my chemotheraphy sessions and after-effects were relatively easy-going (compared to how they could have been) there were a couple lasting side-effects.

I write ‘a couple’ because I count them as separate things, despite the fact that they were/are both caused by Peripheral Neuropathy.

Side-effect #1: Numb fingers

I have written about this before, but it’s worth mentioning that the numb sensation on the tips of my fingers relented for about 2 months after my final chemo dose, before finally disappearing completely. I’m happy to say I’ve had no tingling sensations in my fingers for at least a month now.

Side-effect #2: Hand cramps

Apparently a less common symptom of peripheral neuropathy, is muscle cramping. These cramps occured solely in my hands, happened entirely at random and could be fairly severe. I could be in the middle of just about anything and suddenly one (a couple of times both) of my hands would seize up, and I’d have to use the the other hand to massage it back into a usable state. My hand would return to normal within seconds, but it could be a rather uncomfortable and alarming sensation. This cramping didn’t happen during the chemo, and only started after I had finished, so it was like some sort of unwanted farewell present. The time between cramps has being growing longer and longer but I still can’t say for sure that it’s gone away even now, as the cramping lasted far longer than the numbing sensation the neuropathy originally gifted me with.

Apart from that though, my body has largely returned to normal. Maybe I get tired a little easier than before, but maybe that’s just me getting old or being entirely unfit.

Update #2: Exercise Electrocardiogram

Prior to the cancer officially being re-diagnosed, I had had pretty severe chest pains a few times over a 6-12 month period. After being told that my body ‘should tell me’ if something is wrong, I realised that this was probably part of that. So when I randomly had the same pain hit me about 2 months ago when heading out to the movies, I was a little alarmed. Due to this, my doctor booked me in for an exercise electrocardiogram. If that sounds super fancy to you, let me change your perception and show you with a GIF exactly how I looked earlier today:

In the lead-up to this test, I wasn’t worried. I figured I was probably fit enough not to embarrass myself in a test that is performed by old people and (I assume) people with injuries. However, I randomly woke up with a pulled groin muscle this morning and could barely lift my leg, so I knew this was going to be an interesting time.

I walked into the room with a bed, a treadmill, and a whole bunch of computer screens. I was told to take my shirt off and had a billion things stuck to me (I wasn’t joking, I really did look like that gif above) before being told to lie on a bed. An ultrasound was then taken of my heart in a resting state, and then it was treadmill time. The treadmill starts off super slow, which gave me a strong ‘this is pointless’ impression, but every 30 seconds it sped up and inclined slightly. By the 9th minute I was kind of dying. My groin was killing me, I was in desperate need of a drink, and my legs had had enough. We called it quits and I was told I’d done really well (which I’m sure was a sympathetic lie). I then lay back in the same position on the bed and we took more ultrasounds, being told to hold my breath (quite difficult after the struggle I’d been through) repeatedly while they looked at my heart. I was told pretty much straight away that my heart was fine, which I had expected (this test was really just precautionary), so that was nice.

I didn’t get a photo of me shirtless, because no one wants that, so instead, have a photo of the treadmill that was almost my downfall.
Treadmill

Update #3: Preventative chemo

Probably the most important update, though, is that I am now going to be having ‘preventative chemo’ every 3 months for the next 2 years. The doctors wanted to give this to me, given that the cancer had already come back once (and with a vengeance) but it came down to the hospital and drug company deciding whether they would pay for my treatment (because paying thousands of dollars myself would be less than ideal for me). Fortunately, it was determined that the hospital would be able to foot the bill.

At first this seemed pretty tragic. Chemo isn’t a great experience, and it was finished. Being told that I could look forward to continuing it for 2 more years was a bitter pill to swallow. That said, there’s a reason for it. And at the end of the day, being told you are going to have preventative chemo is better than being told that your cancer has returned. Plus, in truth, it isn’t really ‘chemo’ anyway. I (and they, apparently) are calling it that to simplify things, but it’s actually just Rituximab – one of the 4 drugs that was given to me as part of R-CHOP chemotheraphy, but the one which isn’t ACTUALLY a chemotheraphy drug. There aren’t supposed to be any side-effects. No hair loss, no vomiting, no tiredness… though there can be a little bit of ‘flu-like symptoms and an extremely short-lived rash which I experienced during my first chemo cycle. To give you an idea of how short-lived that rash was though, it was gone as soon as the drug stopped being pumped into my blood.

Having had the first dose of this, I didn’t feel great directly after, but I’m not sure if this was just my body automatically going into ‘tired mode’ because it was expecting full-blown chemo, or if it is a little worse than they make it out to be. That said, I was only tired, which is nothing that some rest/sleep can’t cure. It was hardly full-blown chemotheraphy horribleness.

So I can really only feel thankful that this is part of my yearly routine now. 3 times a year, I sit in a chair and undergo ‘chemo-lite’ (which is what I prefer to call it over my housemate’s HORRIBLE name for it, ‘Baby’s first chemo’). And those 3 times a year make me less likely for the cancer to return. That seems like a good deal to me.

Update #4: Hair loss/regrowth

And now for the update that everyone REALLY cares about: My hair.

I’d say about 3-4 weeks after my last chemo, I was forced to shave my head again, as my hair was about half an inch long but kinda… thin and not great. After that, it grew back as could be expected of anyone with a shaved head, except for one difference – it was like the top of my head was covered in BABY DUCKS. IT WAS SO SOFT AND FLUFFY AND AMAZING. This could be seen as another positive to hair loss (as covered in my previous blog post) but that really depends on whether or not you want EVERYONE rubbing your head. Because that will happen. All the time. Because your hair will be amazing and soft.

Hair pic

It’s back. It didn’t go curly like everyone said it would. It didn’t change colour. It just came back, relatively quickly, to the way it always was (perhaps, with this added softness, better than ever). So if you’re stressing about losing your hair, just remember, it probably won’t be permanent, it might not even be for very long, and when it’s back, you’ll get to spend weeks rubbing your own head with joy.

To conclude…

For the reasons discussed at the start of this post, it might be some time before I update this blog again. I hope what you’ve read so far has, or will, help you either with your own struggles or understanding what someone close to you is going through.

Take care, and stay healthy.

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Hair Loss (“Shay, did you put your head in the Shine-O-Ball-O?”)

I’m taking a break from the gruesome posts about giant needles and the mass draining of my blood to cover something a little bit different: hair loss.

Now, I feel I should start by saying that obviously hair loss can occur for a variety of reasons. Many, many, people are going to suffer from hair loss/baldness throughout their lives from a variety of reasons – often simply because it’s just in their genes and/or they’re getting on in years. This blog post isn’t for them. This isn’t for the people who start noticing a bald patch when they’re 40 years old. And this is certainly not for those people who shave their heads, preferring to keep their heads shiny and bald (and more power to them). This, like everything else in this blog, is for those people undergoing cancer treatment and who will, in all likelihood, lose all of their hair in a matter of weeks. There is nothing natural about this process, and that’s why I’m covering it here.

Hair Loss

When you are first diagnosed with cancer, and when you first start the treatment (specifically chemotherapy, as radiotherapy will only make your hair fall out in the targeted area(s)) one of the last things on your mind is going to be your hair. You’ll be thinking about much bigger things, such as your life and how much longer you have left. You’ll be thinking of all things you’ve wanted to do and all the time you’ve wasted and all the people you love. If the first thing you’re thinking of is that your hair is going to fall out, something is probably wrong with you. However, even though hair loss might seem like a small thing in a much bigger picture (because, quite frankly, it is) the chances are, you’re still going to find it distressing. Why? Because, at least for me, when you run your fingers through your hair and pull your hand away to see it covered in hair, things start to become real. The hospital visits and the procedures and the wild ride you’re taken on while moving from appointment to test to appointment to test can at least be partially forgotten when you get home. However, when your hair is falling out all over your pillow, and when you have to look at yourself in the mirror watching as your appearance changes, you can no longer escape it. Cancer is part of you now, and you will be reminded of it every single day.

I’m a guy, and I understand that this process could very well be more distressing for women or simply guys who care a lot more about their hair than I do. One might even think I’m not qualified to talk on the subject as much as others, and they might be right. However, while I may not be super hair obsessed, I’d like to share a photo with you from ten years ago. I couldn’t actually find an appropriate photo so this photo of myself as a pirate Santa will have to do.

Pirate Santa

That’s my real hair. In fact, it actually got a bit longer than that before I decided to make myself employable and get it cut short. I have always been kind of partial to longer hair (although never anywhere near that long now, I’m long past that phase). I am not partial, at all, to not having ANY hair.

Six Years Ago – Hair Loss, Part 1

The first time I started chemotherapy, coming up to 6 years ago now, I started thinking my hair wouldn’t fall out. A couple of cycles in and my hair seemed as strong as ever. However, eventually the time came when, as I described earlier, I ran my hand through my hair and it came out covered in hair. It was alarming. Very alarming. I knew how I had to handle it though – I immediately went to the hair dressers and had them shave my head. This was easily the best decision to make, and if any readers are going through something similar, I STRONGLY suggest you shave your head as quickly as possible. As soon as you notice hair loss, don’t put yourself through the agony of watching it get worse every day. Just bite the bullet and shave it off. Also, as soon as you know you’ll be having chemotherapy, get your hair cut short. You don’t have to shave it, but get it cut as short as you think you can handle. This would be a GREAT opportunity to try out a hair cut that you’ve never had before – because chances are, it’s only temporary anyway. And if you like it, you can always do it again when your hair comes back, which chances are very high that it will once the treatment has finished.

Having said that… as soon as I shaved my head, my hair stopped falling out. I never actually went bald. My hair started growing again and eventually went back to normal. In fact, during radiotherapy I had a bald patch at the back of my head down near my neck, but the rest of my hair was actually fairly long considering it was only shaved a few months earlier. So what I’m saying is – you MAY NOT go bald. However I wouldn’t count on it. The best thing you can do is to assume that you will, and if you don’t, count your blessings.

This Time Around – Hair Loss, Part 2

I wasn’t naive enough to think I’d be that lucky again. This time I was going to be taking a different kind of chemotherapy will all new drugs so there was no reason to think I’d keep my hair. I was totally prepared for it. On the day I was called in for the first chemo session, I was on my way to get my hair cut. I meant to get it cut fairly short but my hairdresser had other ideas. It was shorter, but not ‘short short’. Still, it was different, and since it was temporary, I kept it.

It took no time at all for my hair to start falling out this time. And, like last time, I went back to the same hair dresser and had him shave my head with the closest shave he could do (a zero). One positive I should point out, is that so far I’m yet to find a hair dresser that has ever charged me to shave my head because my hair is falling out due to chemo. I guess that’s not all that surprising – but hey, free haircut!

Unlike last time, my hair didn’t start growing back. Well, not really. I’ve never been COMPLETELY bald – there’s tiny hairs on my head and my facial hair does attempt to grow back (I had the SOFTEST moustache ever the other week. It felt amazing). However, I look bald. Even my eyebrows, which have struggled to stay with me all this time, have started to give way. Nobody wants to have no eyebrows, but that’s a fate I’m facing right now.

Here’s a recent photo of me:

Bald head

Hair loss cons:

Cons are pretty obvious for hair loss, so I’m only going to list a couple of ones you’re probably unaware of / haven’t thought of.

Eyelashes constantly falling into your eyes. Yep, your eyelashes aren’t safe from hair loss, so you’ll end up blinded by them more often than usual (not CONSTANTLY – you only have so many)- The feeling of shattered glass. I don’t know what caused this exactly, and it didn’t happen 6 years ago, but towards the beginning of my hair loss, if I touched the top of my head, it felt like I was pushing shattered glass into my scalp. I assumed this was due to hair falling out and basically stabbing my scalp but I really don’t know. It made sleep difficult because it’s kind of hard to lie down and have your scalp touch nothing, so basically it was like sleeping on a pillow of nails. I have no idea if this is a common thing or the exact cause, like I said. I’d be interested to know if anyone out there has experienced the same thing.
Loss of facial hair. By now, everyone knows that facial hair is the best. Plus, if you’re a hipster, you’re basically going to be shattered by losing your hipster beard.

Hair loss… pros?

Yep, they definitely exist! And these are the ones, if you’re going to be losing your hair soon, that you should be focussing on, because I mean every word!

Fantastic for Summer / wind in general. When I first had my head shaved, we drove home with the window down and the wind on my scalp felt amazing! It still does. On a hot day, putting water on the top of your head and feeling the breeze on it is simply wonderful.
Best showers ever. The water pouring down straight onto your scalp actually feels great. Every shower is like a head massage. Also, showertime is now super quick. No more washing of hair and it takes like 30 seconds to get dry when you’re done!
New hairstyle. You’ve never had a better time to try out a random new hairstyle – because if it doesn’t look any good, it won’t matter for long. As soon as you start chemo, I HIGHLY recommend getting your hair cut as short as you can manage, to make your hair falling out less distressing. However, if you want to get a mohawk or something just because you can, I am highly supportive of this too. You’ve never had a better chance to do something random with your hair, so do it. If your hair never falls out, then… that mohawk will grow out eventually. Don’t blame me.
Smooth! Sure, the hair on the top of your head is gone and making you look a little like Gollum, but hair loss isn’t just going to occur there. Say goodbye to constant waxing/shaving, ladies (and guys who are that way inclined). Honestly I could get used to this.

What to do?

There may be pros, but they’re probably not going to help you feel any less self-conscious. The fact is, part of your individuality has been stripped from you, and that can be hard to deal with. So I’ve decided to summarize some of the more popular methods here for dealing with hair loss when going out in public.

Beanies:-

Beanies are an easy fall back. They’re everywhere, and they’ll keep your head warm which is going to be quite necessary in the colder months. Plus you have plenty of options. I’ve made a quick beanie guide for you to follow below.

Regular beanie
Beanie-regular-final

Sports beanie
Beanie-sports-final

Novelty beanie
Beanie-novelty-final

Beanie baby
Beanie-baby-final

Head scarves:-

Head scarves are probably the most common covering utilised by those who have lost their hear to cancer treatment, and for good reason. Scarves are, after all, plentiful and can be adjusted to taste. Unless of course you’re in my house, in which not only are there no suitable scarves, but I am entirely unaware of how to actually wrap one around my head. And that leads to this:-

Head-scarf-final

Wigs:-

Wearing a wig is always an option, though somewhat extreme. You could go out of your way to buy an expensive, quality wig, only to never need it again a month or so. However, it’s still an option and will let you try out some fancy new styles or colours that you wouldn’t normally be about do with your actual hair. You can even do this without breaking the bank – the below examples show what can be done with only $20!

Elvis(?) wig
Wig-Elvis-final

Mullet wig (all class)
Wig-mullet-final

Nothing at all:-

Alternatively, and perhaps the best option, is simply to do nothing at all. This is a time when you are, or have been, fighting for your life. The baldness probably won’t last, but while it does, wear it as a badge of honour. People will likely know what it means, and they will understand. No one is going to be judging you for your looks during this time, and it wouldn’t matter if they did. Your life is far more important than what you look like, and that baldness symbolises the possibility of several more years you get to keep on living. Embrace it.

And finally, I’ll leave you with an image of what that terrible Elvis wig was actually supposed to look like:
Wig - Elvis Comparison

Stem Cell Collection (If you like needles, you’re gonna LOVE this!)

There are two things I feel I need to address before I begin this blog post.

Firstly, last Tuesday (the 4th of Feb) I met with a doctor who advised me that the latest PET scan had shown no cancer whatsoever in me. While this is obviously good news for me, it’s terrible news for the blog, as I might run out of things to say sooner than expected. This is obviously a tragedy. Seriously though, this doesn’t mean I’m ‘cured’ or anything quite that dramatic yet, and it won’t save me from having to endure the next two cycles of chemo. I also still don’t know if they’ll end up opting to give me the ‘super chemo’ dose at the end, though given the progress I don’t believe they will. Still, it’s great to know I’ve had such a response to the treatment. The only real downside is that now when the chemo is hitting me hard, while I’m normally thinking ‘if I feel this bad, imagine how bad the cancer feels,’ with the knowledge that there currently IS no cancer in me, I’ll instead be thinking ‘well, poop’.

Secondly, if you aren’t any good with needles and those types of things (I know you’re out there, I’ve been told one of my posts made someone throw up once, which I can add to my lifetime achievements) I must, sadly, strongly advise that you stop reading now. This blog post will contain needles. Many of them. And one in particular that may haunt your dreams. There will also be some blood, and just… overall the images won’t be pleasant. Come back for the next post. I promise it will contain puppies and butterflies and all those nice things. This one, however, is not for you. Go now.

Stem Cell Collection

Now that the weaklings are gone, I can safely assume I’m left only with those okay with needles, and possibly those interested in seeing horrible things done to me. So let’s get to it.

A decision was made several weeks ago (late last year) to have some of my stem cells collected/harvested. The main reason for this decision was the plan to give me a super dose of chemo at the end of my currently planned chemo cycles. As I already wrote above, this ‘super chemo’ may or may not still happen,  but I’m guessing not. If it does, the stem cells  will be given back to me after the chemo because the dose will be so severe that my body will need extra help to recover. If the super chemo does not go ahead, my stem cells will stay stored away indefinitely in case one day I do need them.

To prepare for this, I met with a doctor from the Haematoligy department who explained why this procedure was going to be performed. With this doctor was a member from the Apheresis team, who then organised me to come back to the hospital so they could go over the procedure with me in detail. This was something that was pretty far against the norm. Hospitals, in my experience, don’t have you come in weeks in advance just so they can tell you what’s going to happen. Usually I just turn up on the day and get taken for a ride full of pain and unexpectedness. Honestly though, I’m fine with that, as long as I don’t have to make extra trips to the hospital for little to no reason. Here, they had me inject a stress ball with a syringe (similar to the ones I’d already been doing the day after chemo) and also had me sign some consent forms. Apparently some people are against the process due to religious or spiritual beliefs. You’d have to be pretty foolish to let any kind of beliefs get in the way of a possibly life saving procedure though, if you ask me.

Once this was all done, the procedure still had to be organised. Basically, 5 days after chemo, I was to start injecting myself with the same needles I had previously been injecting myself with the day after chemo. These were smaller doses, however there were now 2 of them per day (both at the same time, at 8am), and this had to be done 5 days in a row. On the 5th day, 10 days after chem0, I was to go in to the Austin Hospital and have a blood test to see if my stem cells were ready to be harvested.

Again, I’m not going to go into the extreme technicalities of how the injections work (because I don’t know) but basically, as it was explained to me, stem cells are created in the bone marrow and do not normally get released into the blood stream. These injections would not only help encourage the creation of new stem cells, but also allow them to be released into my blood stream for collection, which normally wouldn’t be possible. Whether or not this is simply because of an overflow of stem cells or if the injections have a secondary function, I’m not sure.

The stem cell collection was actually pushed back a couple of times due to the Christmas period and lack of staff. As such, the actual process started almost 2 months after I had this initial meeting. I had chemo on the 24th of January and started injections on the 28th (for those paying close attention, you’ll realise that’s a day EARLIER than I was supposed to – and yes, due to miscommunication somewhere down the line, I started the injections a day early by mistake, but it didn’t matter). This meant I didn’t have to inject myself the day after chemo, but injecting myself with BOTH of these for 5 days straight quickly made up for that.
2014-01-28 08.10.21

To add to the joy, on the 10th day (the 3rd of February) the injections had to be done at 6am, so that I could head into the hospital at 8am for the blood tests (to see if my stem cell levels were appropriately high). To make matters worse, after this blood test, I then had to go get a vas cath inserted in my neck (I warned you, don’t say I didn’t warn you) without even knowing the results of the blood test. This means that I could have a needle sticking out of my neck for DAYS while coming back to the hospital every morning at 8am waiting for my blood results to give an acceptable reading. This is quite an unpleasant thing to think about, so at this stage you’re really hoping that the stem cell levels in your blood are high.

Before any of that though, when you first arrive you are seated in a comfortable chair next to the machine that’s going to be taking your blood, stealing the stem cells from it, and then giving your blood back to you again. That machine looks like this (because it is this):
2014-02-03 08.30.59

The nurses then took my blood from my hand with one of the tiniest needles I’d ever seen.
2014-02-03 08.43.31

After that, I walked down to the Radiology department where I was to be introduced with this horrifying instrument.
2014-02-03 09.08.11

See that hook? The long white part of the hook? That is going to be inside my neck soon enough, going all the way down into my chest. I told you – it is a thing of nightmares. And this is the thing that, if your bloods don’t come back with an acceptable level of stem cells, might be left inside you for several days. Comforting. I should point out, however, that stem cell collections don’t ALWAYS require the insertion of a vas cath. This is only done when the veins of the patient aren’t ideal (as mine currently aren’t, thanks to one million blood tests, chemo, etc etc).

The procedure (of inserting the vas cath) itself, however, wasn’t too bad. I didn’t get any photos of this, but basically you are wheeled into a big spacious room, with a machine that looks a lot like this and lots of monitors along one wall. You’re then asked to turn your head to the side and they put something that appears to be a giant tarp over your head. At this stage you can only see through a small gap to your side, and occasionally a nurse would look through the gap and ask if you were okay. Again I’m feeling fortunate that I don’t have any claustrophic tendancies, because a lot of procedures I’ve been through feel a bit closed in.
The only thing that hurt, as far as the vas cath insertion went, was the local anaesthetic, which tends to always sting a bit. After that though, I barely felt anything at all and it was over in no time. The next thing I knew, I was being wheeled back out of the room into a waiting area.
2014-02-03 10.22.58

This was also the first opportunity I had to actually see the vas cath sticking out of me.
2014-02-03 10.25.27     2014-02-03 10.23.40

At this stage I was wheeled back to the Apheresis department, and advised that the required level in my blood was ’18’ and mine was ‘124’. Clearly starting the injections a day earlier than I was supposed to had worked in my favour. Either that or my blood is awesome. Whatever the reason though, this meant that the harvesting of my stem cells could begin.

Here’s me hooked up to a bunch of tubes.
2014-02-03 11.28.10

Basically the blood is sucked out of me through one tube, cycled around in the machine while it takes the stem cells out, and then given back to me through another of the tubes in a kind of ‘one man blood transfusion’.
2014-02-03 11.28.31

I was warned that if I experienced a strange taste in my mouth that I needed to tell the nurse (who was always standing right near by) and as it happened, I did. This is one of the rare times that something I’ve been warned about actually happened to me. They gave me some tablets (calcium and… maybe potassium? That’s probably not right. Maybe I should have paid more attention but at the time the side of my tongue had gone kind of numb so I was distracted) and paused the machine, and when they started it again I had no issues.

This was also probably about the time that I found out that even though my blood levels were great, I was STILL going to have to leave the vas cath in my neck overnight (or more specifically, until the lab had confirmed that they had everything they needed). So yes, my body did all it could, but I would still be going home and attempting to sleep with that thing hanging out my neck. And no, it wasn’t covered in any bandages or elaborate wrappings – it basically stayed as you saw it, sticking out of my neck. And all that, for THIS tiny amount of stem cells, which took several hours to get:-
2014-02-03 15.12.20

Having the vas cath sticking out of me overnight wasn’t overly painful, but as you can imagine, it is rather uncomfortable. And knowing that it’s sitting down inside you near your heart can make you somewhat paranoid of bumping it (although I was given absolutely no warnings or anything of the type that this could be an issue). I slept, somehow, rather soundly, on my back, and when I woke up on my side I freaked out slightly before realising that I was indeed, still alive. Earlier I had received a call and was told that everything was fine and that the vas cath could be removed the next morning. While I had received that call I was on the couch, having foolishly decided to lie down and finding myself unable to move.

The next morning, it was taken out. I couldn’t even feel it being taken out (there was no surgery this time, the nurses in the Apheresis clinic are able to do this), but what I did feel was the disinfectant being used around the wound before pulling it out. That stung. That stung badly. Finally though, it was out, and I was left with this gauze on my neck.
2014-02-04 11.07.07

Now, the wound has already faded to little more than a small scar and I have a bunch of little life saving stem cells stored away for when I need them. Even if I don’t have the ‘super chemo’ this will likely turn out to be worthwhile, even if it’s just to be ‘on the safe side’.

So that’s all there is to it. Those of you who lasted the whole way through this post, I hope you enjoyed it, or at least learnt something.

Chemo – Part 2 (It’s my birthday and I’ll have HORRIBLE toxins injected into my body if I want to)

I’ve been a little slack with updates here, and for that I apologise. However, with Christmas, New Years and my birthday all having gone by, and a few rough days following the last chemo, I have excuses.

I have had my second and third doses of chemo now, having had these in Day Oncology, rather than requiring a hospital stay. This experience was closer to what I experienced 5 years ago, though 5 years ago I didn’t have anywhere quite as fancy as the Olivia Newton-John centre to go to.

The process is relatively simple. You enter a big room full of comfy recliners, sit in one of the recliners, and stay there for a few (in my case, around 5) hours while the chemo drugs are pumped into you via a cannula. The set up looks like the below:-

2013-12-06 10.23.30

If you’re wondering what’s on my arm, it’s a heat pack. It’s been placed there prior to attempting to put the cannula into me, because my veins were being kind of lousy. The warmth brings them up a bit and makes them easier to get to.  You’ll also notice my new Vin Diesel look. I assure you all that I’m in much better physical shape than him.

Apart from the differences in location and atmosphere, the process is pretty much the same. A number of different drugs get pumped into you and then you go home. What happens once your home is just about anyone’s guess. Everyone reacts differently. Some people won’t have any side effects and others will be a total mess. My experience this time is different to the last time I had chemo. I have days when I feel perfectly healthy, and then I have days when it’s a lot harder than it was 5 years ago (when I pretty much just slept a lot).

Chemo – Dose 2 (December 6th 2013)

Arriving home after chemo I felt fairly tired and spent a lot of time on the couch. This was expected. What I didn’t expect was the heartburn/indigestion that would keep me up at night over the first few days. It was unpleasant to say the least. However, it only lasted a few days, and was nothing compared to what was to come. 5 to 6 days after the treatment, I grew incredibly tired and ‘out of it’. It was basically like having the flu (hot / cold flashes included). I was almost delirious, and getting out of bed was near-impossible. This only lasted a couple of days, fortunately, and in that time my temperature never rose above normal levels, which is good because if it had I’d have had to go to the ER. After this excitement, not a whole lot happened as I gradually felt healthier over the next several days until a few days before the next cycle where I basically felt fine.

Chemo – Dose 3 (December 30th 2013)

I felt basically like I always do leaving the Austin and heading home. Lethargic and ‘wrong’ in a sense, but okay. By that night however, I’d gone backwards a little, and for the first time ever I ended up throwing up due to chemo (it took 5 years, but it finally got me). This was rather unpleasant. I had similar heartburn/indigestion issues which this time I was prepared for with some prescribed Somac (I’m not sure if it actually helped, to be honest, but it couldn’t hurt). I felt fairly sick and horrible (though nothing compared to how I felt a week into the previous chemo cycle) for the first 8 or 9 days. On my birthday, the 7th, I went out to dinner and felt mostly fine until I’d eaten something and felt kind of sick. This wasn’t a nauseous kind of sick mind you, but had more to do with the indigestion/heartburn feelings from earlier. It wasn’t really until yesterday, the 9th, where I had my first full day of relative health. I also feel fine today. (Although, ‘fine’ being a relative term. I don’t exactly feel like I could run a marathon, though I do feel able to walk down to the shops at least if need be). Of course, this being what it is, I have no idea how I’ll feel tomorrow or the day after that. I just have to hope I stay this way, feeling somewhat healthy and myself, until the next dose on the 24th.

It is becoming clear that with each cycle, it’s getting harder. To know that I’m only halfway isn’t pleasant. To know that one of the doses coming up will be a ‘mega-dose’ (if you will) that will require a stem cell transplant (taking stem cells from me prior to the chemo, to put back into me later) so that they can use my own stem cells to heal my body which won’t be able to heal itself – isn’t pleasant either.

But hey, at least the weather’s good!

Bonus content!  That was meant to be the end, but I totally forgot one of the main points of this blog post, so I’m adding it below!

What I almost (totally did) forget to mention, is that I’m now injecting myself with a needle the day after each cycle. This drug in this needle is meant to boost the production of my white cells in order to help me recover faster from each chemo cycle. It’s quite similar to the needles diabetics need to deal with every day of their lives, and as the nurse told me, if 8 year old girls can do it, I sure can. However, if you really dislike needles, I’d suggest you skip over the following images entirely.

The syringe, as it comes out of the box.
2013-12-31 15.08.18

Lining the syringe up with my fat – of which, fortunately, I have plenty. What you may not be able to make out is that needle has a VERY slight curve at the tip which indicates which way you should be pointing it. The curve should be aimed towards yourself. You hold the needle in a similar fashion as you would a dart. (Note: I do not recommend practicing this by jabbing a dart into your stomach.)
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Needle goes in! This is actually entirely painless. That is to say, you can’t feel it AT ALL. It’s actually kind of remarkable. In fact, someone could be injecting you with something in the stomach RIGHT NOW and you wouldn’t even know.
2013-12-31 15.14.41

This is when you use the top of the syringe to inject the drugs into you. You actually can feel this, but only mildly. It’s best to do this part quite slowly (I haven’t tried to do it fast, but I was told that to do so might be painful).
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The cool thing about these particular syringes, is once you’ve pushed the top down all the way, a mechanism inside the casing grabs hold of the needle and then pulls it back inside itself. Like so:-
2013-12-31 15.15.19    2013-12-31 15.15.32

These pills actually have nothing to do with the injections. I just forgot to write about them earlier in the post so I’m including them here. I have to have these 4 pills every morning for the first 3 days after chemo (also on the day of chemo, just before). They’re steroids and presumably, if I lost my appetite, they would give it back to me. However since I haven’t lost my appetite as of yet, they’re not doing a great deal. If anything, I’m likely putting on weight (this happened to me 5 years ago too). Sadly, the steroids have yet to make me look even MORE like Vin Diesel.
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There’s also another update which is borderline criminal of me to forget to add. My last meeting with my Oncologist revealed (via the PET scan) that the cancer within me has reacted well to the chemo and is almost completely gone already. This doesn’t in any way mean I’m in the clear, but it’s obviously a good sign and I’m sure you’ll all be thrilled to hear it, as I was.

And since I already used my closing ‘at least the weather’s good’ line, I’ll simply say that I hope you all had a wonderful Christmas, and Happy New Year to all of you.

Chemo – Part 1 (Chemo chemo chemo chemo chemo chameleon)

On November the 12th in a meeting with my Oncologist, I was told that, according to test results, the cancer had progressed slightly, so there would be no more delaying the treatment. I was going to receive a call some time on either that day (a Wednesday), the following day, or Friday, whenever a bed become available.

I had chemo 5 years ago, so I thought I knew what to expect. However, this first session involved a hospital stay, which was something new, as all 4 treatments last time were just day procedures and never involved me having to stay in the hospital overnight.

I received a call the following morning (as I was on my way to get a haircut – which I’ll go into more in a future blog post I intend to dedicate to hair loss) asking me to come in around lunch time. I did so, and was (eventually) shown to my bed. It was a pretty fancy bed, which sadly took me way too long to work out (the ON button doesn’t necessary work the way you think it will):-
2013-11-13 13.49.23 (Medium)

I then proceded to IMMEDIATELY hit my head on this thing:-
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On the plus side, the view from my window was pretty good and when I arrived they were already playing my jams:-
2013-11-13 13.49.44 (Medium)  2013-11-13 13.52.25 (Medium)

A nurse then put a cannula in my arm (as you can probably imagine from the previous blog posts, this is something I’ve grown quite accustomed to):-
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And don’t I just look thrilled about it?
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It was now that the wait began. I was told I would be in the hospital for 1 or 2 days, but by the time everything was sorted, it ended up being too late to actually perform the chemo, which meant I had to wait overnight in the hospital for basically no reason. As you can imagine, this wasn’t thrilling news, but fortunately I’d stocked my Galaxy Tab with TV shows and came well prepared.

Early next morning, the chemo actually began. There were 4 different drugs involved. The combination/type of chemo is called RCHOP, different from the type I had 5 years ago (ABVD) so I didn’t know exactly what to expect. In both cases, one of the drugs was orange coloured (it may be the same drug, I’m not sure). This goes through you pretty quickly, and – I feel I should warn you – is the same colour coming out as it is going in.

The orange one:-
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Some other random one, hooked up to the… pole… thing:-
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The process of having chemotherapy done to you doesn’t really hurt at all. That’s not what everyone fears with chemo. I did have it through my hand 5 years ago, and one of the drugs, if pushed through too quickly, could hurt a little, but this time around, through the arm, I could barely feel it. It’s not the process of inserting the chemotheraphy that’s difficult, but the aftermath. The days and weeks following this, even when the drugs have been totally flushed from your system, is the real struggle. Chemo targets cancer cells, but chemotheraphy is quite far from a perfect science. As such, it takes a whole heap of cells you actually want down with the cancer cells – particularily the fast growing cells – such as your skin cells among others (this is also why it’s common for people’s hair to fall out, but as I’ve said, I’ll go into that more in a future blog).

What this means, though, is that immediately following the treatment, I felt perfectly fine. I had to stay in overnight for observation, and by the following day I started getting pretty anxious when it looked like I might have to stay in yet another night. It’s one thing to stay in hospital when you feel sick, but when you actually feel healthy, it’s quite another. On the plus side, the food at the Austin actually wasn’t too bad! I’m not sure if that’s just for the cancer ward for if it’s the same menu across the whole hospital, but it was fairly decent food (as below):-
2013-11-14 09.55.57 (Medium)

The only other real positive was that I was labelled ‘ridiculously photogenic hospital guy’, following this photo of myself being posted online:-
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Fortunately though, I was released on Saturday after only a 2 night stay.

The side effects have so far been rather kind to me. I didn’t really suffer from any nausea (one of the most common symptoms, though I didn’t experience any during the course of my treatment 5 years ago either), however I did have some pretty bad heartburn/indigestion for about a week after (I have since been given some meds to help with this after the next chemo session, which is actually tomorrow). There were a couple of days when I felt particularly out of it, and there are obviously some expected side effects of fatigue and a general feeling of weakness, but so far nothing that was too extreme.

I know that last time I had chemo (the ABVD type) my body just felt wrong all over. It basically felt like what it is – poison running through your veins. However, so far I haven’t felt that to the same degree. Whether or not that’s just because I’ve only had the one dose, I’m not sure. Like I said, there were a few days where I simply NEEDED to sleep in the middle of the day and collapsed on the couch, and couldn’t even fathom the idea of walking 100 metres down the street, but all in all I’ve managed to get through these first few weeks pretty easily. In fact, I managed to play a few games of mini golf (winning all three, citing ‘chemo power!’ as the key to my victory).

While I’ve coped fairly well so far, I’m not being so naive to think that this is the way my body will react for the next 5 treatments. Maybe I’ll get through this in a similar fashion, but I know things could, and likely will, start getting harder. In fact, I have been told that after a couple more doses of this chemo, they’re going to amp the dosage up a fair bit following a stem cell collection. The dosage will be so high that my body physically won’t be able to cure itself, so the stem cells they’ve collected from earlier will need to be given back to me to boost my body’s own healing. That sounds like fun.

So tomorrow I’m going in again, and assuming my white cell counts are okay (they were a bit low earlier in the week but I had another blood test today to see if they’re up to an appropriate level to allow me to have another dose), I’ll have my second dose. Wish me luck.

Oh, and after the last session (immediately after) I was told that if the cannula comes out of the vein or isn’t in properly, two out of the 4 drugs can cause my skin to DIE when they are going in, causing me to require skin grafts. So yeah, that’s good to know.

RNVG (GBPS) Scan (I… don’t know how to give this a funny title…)

I started chemo on the 14th of November – 13 days ago. You can expect a detailed blog post to come which will be dedicated to that, so I won’t go into that too much just now. Instead, a few days ago I was asked to undergo an RNVG (GBPS) scan, which I decided I’d blog about first.

If you don’t know what an RNVG (SBPS) scan is, I imagine you’re not alone. An RNCG scan (I’m shortening it now, I’m pretty sure you don’t need the GBPS part) is actually a test to check how well your heart is working. This was actually supposed to be done a week earlier, not long after my chemo, but I had successfully filed the letter I received from Austin Health in a random pile, never to look at again, and completely missed the initial appointment. This scan, at the Austin at least, is performed in the nuclear medicine department (the same place as the PET scan I blogged about earlier). What I didn’t mention about the nuclear medicine department in the PET scan blog, was that this department appears to be in the basement, hidden from the rest of the world and all natural light. You leave the vibrant and bustling areas of the hospital behind and head down an escalator into a cold, sterile, lonely place. I may be exaggerating slightly, but there certainly aren’t any windows and I do feel bad for the staff who work there every day.

Like I said though, this test again involves injecting radioactive stuff into you, but I was assured that it was in no way harmful. I was also told, disappointingly, that I could not expect to glow in the dark for any period of time after the test was complete. This test was not painful. It was not even remotely stressful. There was some waiting around which wasn’t all that fun, but assuming you have some patience and a good book, there is absolutely nothing to fear about being the subject of one of these scans.

Unless of course you have a fear of needles. Because there will be a needle. And if you’re afraid of needles, I don’t even know why you’re on this blog – but you are a brave soul for attempting to read my blog posts and I commend you.  Basically, the very first thing that happens is a simple blood test. Or, rather, a cannula will be put into your arm, as shown below in my own arm, which will be used to draw blood.
2013-11-21 10.25.46 (Medium)
I probably wouldn’t try what’s on tap.

What happens next, is your blood is put into a little metallic container and somehow (getting very technical here) implanted with some radioactive stuff (dye maybe?). After a wait of about 20 minutes, that same blood is then pumped back into you via the cannula.
You are then led into a room with the machine itself (I don’t even know if it has a name, so we’ll call it an RNVG scan… machine…) and just like a PET scan or a CT scan you’re told to lie on the skinny stretcher/bed part of the machine, which will then move you into place during the scan. As you can see below, I am quite comfortable.
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While you can’t really make it out in this image (largely because it looks like a bunch of static at the best of times) the image being produced in the scans is something like what you can see in the screen in the image below. This test is meant to show how well the heart is pumping the blood through your body. The radioactive blood is easier for the scans to pick up, so they can track the very blood that was pumped back into you and use this to work out how well your heart is working.
2013-11-21 11.09.08 (Medium)

Here’s some action shots. I suppose I should say, if you’re claustrophobic this may not be an overly pleasant experience, because that board over my face felt like it was about 1cm away. This did move, however, as the machine spun around me to my sides (they don’t move during the scan, they were positioned prior to 3 individual scans, each of which took around 7 minutes to complete).
2013-11-21 11.09.18 (Medium)

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For me, these scans were taken to be used as as a baseline. Future scan results will be compared with these results to ensure that my heart is not reacting to the chemotherapy too badly. Fortunately for me, as I stated, this process is absolutely nothing to fear. Even the cannula insertion was done incredibly well (I barely felt it at all).
Thanks everyone for reading so far. I hope to have the detailed chemo blog up relatively soon.

Bone Marrow Biopsies (and 99 other things to avoid experiencing before you die)

I have now had two bone marrow biopsies in my life. The first was over 5 and a half years ago, and the second was yesterday. They were both very, very, different experiences. As such, I feel the only way to give the ‘bone marrow biopsy’ an appropriate run-through would be to describe both of them.

To start with though, I’ll give you a short run down as to what a bone marrow biopsy (at least in both examples that I’ve had them) entails. Basically, whilst you lie on your side, a doctor shoves a needle into your back (your pelvic bone, to be exact) and extracts first some fluid and then a solid piece, which feels like the doctor is removing a small slither of your bone, the size of a match stick. (Technically, I’m describing two different things, but they’ve always been a package deal when I’ve had them done – so for a better explanation, see here.)

Now that you have a basic idea of what the procedure actually is, let me continue with the two examples, which were two very different experieces. I will say this though, if you need to have a bone marrow biopsy done any time soon (or if there’s a likelihood that you’ll ever have to have one done) I would skip the first example. It is not going to be pretty.

Bone Marrow Biopsy #1

As I said, the first bone marrow biopsy I had was almost 6 years ago now. As such, my memory of the event isn’t quite complete – but I don’t think I’ll ever completely forget the experience. The procedure was not undertaken in a hospital, but rather in small side room within a private clinic. Not knowing what to expect, this didn’t send off any warning signals in my mind at the time. Due to the fact that I wasn’t actually in a hospital (I assume that’s the reason why) I was not given any drugs except for a local anaesthetic in my lower back in preparation for the needle.
I remember thinking when the needle first went in that they had accidentally poured whatever was in the needle down my back. However, it didn’t take long for me to realise that was actually my own blood. This thought didn’t occupy my thoughts for long however, as all thoughts quickly turned to how much pain I was in. To get the bone marrow the needle must first break through the bone, for obvious reasons. However, apparently I had had way too much calcium in my life as my bone appeared to be unbreakable. Two nurses/doctors/whoever they were took turns attempting to break the needle through my bone, without much luck. All the while, I could feel not only the pain of the pressure as they pushed as hard as they could against my bone, but also the pain as the needle slid across my bone after failing to push through. The best example of this I can give is to imagine pushing a pen down on concrete as hard as you can, and watch as it slips and slides on the concrete, not able to break through. Only, in this case, my bone was the concrete, and it is covered in nerves.
I was pulling at my hair, probably almost tearing it out, through the whole thing.
They finally did manage to break through, and once in the bone, in order to bring out the solid piece they need, they wedge the needle from side to side as they pull it out. This is, as you can imagine, also extruciatingly painful.
Finally, they managed to get the needle out – where they revealed to me that they had failed to actually get the required sample, and they would have to start over.

This experience lasted – I think (I was pretty out of it – not on drugs, but in pain) about 20 minutes and was quite probably the worst thing I’ve ever been through. It was bad enough that I cut back on dairy products in the hopes that my bones would become more brittle if I ever had to do it again. It was also bad enough that I joked that if I ever had to do another bone marrow biopsy, I would simply choose death instead. Apparently, though, that wasn’t the choice I would eventually make – as I had another bone marrow biopsy yesterday. I wasn’t looking forward to it, obviously, but in the end, these things are for our own good, and there isn’t really a choice.

Bone Marrow Biopsy #2

This time around, the bone marrow biopsy was to be performed at the Austin Hospital. That did give me some hope that they’d actually drug me up a little, considering that’s where I had had my two recent liver biopsies were (by the way, I had another one last week – it was pretty painful. I think I had convinced myself that the previous one hadn’t hurt as much as it did). This time around, I lay in a bed in the day surgery department and a doctor came around to me to explain the exact procedure. He also explained that I’d get some sedation and painkillers and it would not be like the previous time I had had the procedure. This did put me at ease a little, but what I didn’t expect was how little it actually did hurt.
When I was wheeled into the room, there was some rather loud piano music playing (a nice, unexpected, touch) and the doctor explained everything he was going to do before he did it. They gave me some sedation (not enough to fall asleep) and the only part that really hurt was the local anaesthetic going in (which is painful, but obviously it’s for the greater good). Honestly during the procedure there was very minimal pain and when the doctor told me he was done, I was shocked. He had me roll over onto my back so I could take a photo of the needle he used to pierce my pelvic bone, as I’d already told him, along with the nurse, about my blog. See the picture below.
Marrow needle (Medium)

So, as you can see, the two experiences were just about polar opposites of one another. Neither was an overly pleasant experience – but honestly yesterday’s bone marrow biopsy hurt less than the liver biopsies, which I never would have expected. I guess the moral of the story is – if you have to have something done – go to the Austin, because they actually know what they’re doing.