An Ode To Dexamethsone

 

After four months of enduring a particular drug called Dexamethasone – a powerful anti-inflammatory steroid used in the treatment of blood disorders, I finally did away with my last bottle.

The comedown from Dex can only be likened to my experiences in clubs during the 90’s, where people of my age group will nod politely and fondly when I say the words “terrible Tuesdays”. When in fact, that lasted nearly TEN days for me, culminating in tonight’s final moments of clarity.

So it’s with this moment of clarity, I write a little poem to my former friend – Dex.

Today’s the day I bid farewell, to four months of bloody living hell. You’ve been a constant thorn in my side, and once weekly, you mess with my insides.

You perk me, you itch me, you mood me to Valhalla, you race my heart rate up to the gods and then crash it to Hades. 

You retain my water and fill me with sugar. You suppress my immune system but surprisingly you fix ‘er.

Despite the nasty taste of a hobos ass, I’ve covered that by smoking grass.

Yes indeed that grass helps with your bone pain, it makes me feel funny and magic like David Blaine.

I will not miss the manic Monday mood swings; or the Tuesday blues, what I will miss the most, is the extra dead red blood cells you help colour my poos.

So goodbye sweet Dex, I wish you a hex, on your house forever more, and your spouse of Thalidomide that I shall not endure.

The end

The end of Act one, and a nice little pain in the arse. 

I’ve reached the end of stage one chemotherapy treatment for my Amyloid/Myeloma blood disorder. It’s been a trying eighteen weeks of fruitful, painful, hilarious & life questioning experience and change.

Today I’m going in for a Bonemarrow Biopsy and spleen scan, the former which shall determine how effective my first part of treatment has been, the latter just to see how badly damaged my spleen is now from being poisoned with cytotoxic drugs. Again, something the doctors have only decided now to bring to my attention. Thanks doctors !

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My little video explains the thoughts surrounding my impending bonemarrow biopsy today. While I’ve gotten through the first part relatively unscathed, there are now a few new health challenges I need to be mindful of that were magically manifested by my body, just to fuck with me more.

  • Unexplained bone pain – which apparently I’m imagining according to the doctors
  • Steroid induced water retention – having ‘Kankles’ is something I never thought I’d have to endure, but here I am, painfully trying to rid myself of excess interstitial fluid retention.
  • Shithouse skin – I look like shit, don’t tell me otherwise.
  • Sudden sensitivity to sunlight, even on my fingernails.
  • My body hair has grown wild like an out of control hipster on steroids

All in all, the first part was easy. I’ve been keeping little videos during this entire process, and as time progresses I shall share more of them – as the face can emote what words sometimes can’t.

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The “Cancer Death Touch”, and other no-no’s you should be aware of!

 

There are so many things you should and shouldn’t do when you’ve got blood cancer. While i’ll save that diatribe for another post, right now I wanted to touch on some things which frustrate me as I go through this ‘experience’. (Let’s not call it a journey folks, unless you’re comparing my journey to a trip along the death road in Peru).

How are you? Really, in yourself, how are you? : I mean, what the heck – i’m all about being positive and uplifting in mindset – but asking me how my inner self really is ? I just said “I’m fine, great actually” . This means “None of your damn business, stop asking” .  My number one pet peeve. Do you expect me to be some enlightened saggy titted yogi squatting over a tatami mat and being all worldly? Yes? Well think again.57441968

“Oh I really want to do something but I just don’t know how to act around you” – what you WISH your friends would say to you instead of being awkward. PLEASE say this so I can give you some direction on how you can help me.

Touching me on the shoulder softly, almost like you’re terrified of hurting me, looking forlornly into my eyes and then opening your mouth to sigh sympathetically . This is what I call – The Cancer Death Touch – It implies that you’re not only worried about physically hurting the person by touching them, but that you might “catch something”. It’s the kind of touch the grim reaper gives when he’s tagged you as next. It’s creepy when you touch us like this, please, don’t do it.

Sending links to unscientific sites that cite ‘cancer cures’ and ‘X/Y/Z GIVES YOU #ALLOFTHECANCER ZOMG’. Especially if that site has links to American TV Doctors like that fuckwit ‘Dr Oz’. Yeah of course it’s true if you read it on the internet – but spare a thought for your friend going through chemotherapy treatment. They’re probably shit scared, terrified of whether it’s working, they don’t need to be force fed bullshit about coconut oil or oregano carvacols curing  their tumour growth. I’m fortunate in that I have a scientific mind and have spent many many many hours pouring over research, comparing & contrasting the pros/cons/benefits & risks of using Chemotherapy to try and (hopefully) cure my blood cancer. I opted to do it because the stats say there’s hope. Drinking kale and Acerola may make me ‘feel’ better, and my wallet lighter – but it’s not going to stop my bone marrow producing abnormal Paraproteins which are trying to kill me. So, I say this with the utmost scientific authority : SHUT UP.

Telling us to take it easy and rest up: Yes, this is great advice, and I do this every day when I sleep, in fact sometimes I have a nap during the day, especially if i’ve been at the gym or for a long walk fighting people in the supermarkets. You mean well, I get this, but cancer patients are already told what to do 90% of their awake time, don’t be an asshole by adding to it.

My thoughts & Prayers are with you” – First of all, thoughts and prayers don’t treat disease, they don’t pay bills, they don’t help your friend out when they’re having a particularly debilitating day where they have barely enough energy to get up and shower, let alone cook a meal. It’s all so easy in this ‘like and share’ social media influenced world to drop a token ‘thoughts & prayers’ in someones day – how about helping? Can’t help physically? Offer to raise funds – or drop a few hundred in their bank account so they can eat next week. Bills don’t stop while you go through cancer treatment.

The list of no-no’s could go on and on and on, and sure this reads a little angry and ranty, but don’t confuse real talk with steroid induced anger. 

Spare a moment for the person in your life that is enduring this, they may not let on exactly how much it’s affecting them, because they want to appear brave and that they can handle it. I can categorically tell you – I AM SHIT SCARED about the next stages of my treatment. Why? Well, because they may very well kill me. And i’m way too young and pretty to be leaving this planet just yet.

Next up on The Healthy Wog: Exercising while undergoing chemo treatment for Blood Cancers. What’s worked for me, what hasn’t. 

 

 

 

 

 

I’m good thanks, no really!

I wasn’t prepared for the reaction to my public coming out of having an incurable blood cancer. It has been surprisingly positive and encouraging, with people following my lead of ‘no sad faces’ .

Of course I think my overall attitude and demeanour towards this horrible health problem has helped shape the conversation. People have come out of the woodwork in surprising turns of selflessness to offer assistance.

I’m nearly a month into treatment, and have my fourth injection of drugs this week. So far, I have been feeling reasonably okay, with most side effects manageable at this point. I’m just getting on with my life as normally as possible, continuing to eat, breathe, gym, walk, cycle, eat more, shoot zombies on my PlayStation, see friends.

Oh my goodness, how normal does that sound? Right?

But the one thing which makes me tired, fatigued over and cranky is answering the same question time and time again.

I really am fine and I’m just getting on with it. 

No, really, I am fine. I am happy most days, I am not a weakling in need of hand holding. But I am your friend. I need human contact. One thing I am not is an exhibition for rubbernecking and gore assertion.

What do I mean by that? Well society dictates a ‘cancer patient’ must look and act a certain way, they should be all hashtag #fuckcancer and alkaline juice sipping bandanna wearing sickly looking people with the reaper standing just to their side. Sorry, that just doesn’t happen in every case anymore! I’m very much aware that I am lucky to be so healthy and very much aware that people can look sick and be sick. I get that.

***NEWSFLASH, READ THESE TIPS!***

  • I will not fulfil your preconceived view of how I am supposed to be or act to make you feel comforted or assured.
  • STOP asking how I am every day, it shits me to tears having to explain that I am fine
  • if I am not feeling great, be prepared to act on it, call me or come see me. Don’t go all quiet on me
  • Rubbernecking me like a car crash, stop it. Now.
  • Again, FOLLOW MY LEAD.

So so from now on, if you message or call me and I refer you to this post, don’t take it personally. Understand why I am tired of answering the same question time and time again. Don’t get shitty because I’m dismissive, I’m dismissive because I’m busy trying not to die.

 

Up next on The Healthy Wog…

“The Death Touch, and appropriate ways to be normal around someone with cancer.”

Bloody blood disorder

Bloody. blood disorder.

I’ve never sworn so much in my entire life (that’s a lie). The day I met with my doctors who told me I have an incurable, but treatable disease.

The thoughts went from “What did I do to deserve this” to “How on earth could this happen? I’m so young and healthy.”

Now settling with “I must’ve pissed off a pretty powerful gypsy in a previous life.”

blood

What’s a blood disorder?  In laypersons terms, it’s a cancer of the bonemarrow and blood. In the grand artform of medical Haematology, blood cancers (I hate that word, but it makes it easy for people to understand) it can range from clotting problems to complex Leukaemia. It can be bonemarrow related, blood plasma, blood, parasitic, and the list goes on. Essentially, having a Haematologist in your life is a really cool thing. I mean, we all need blood to function, or we die.

What’s the prognosis?: Doctors don’t like to give numbers and facts, because the problem with blood disorders is they are very much dependant on the patients underlying health. Let’s just say, i’m under 40, fit, have a reasonably good diet & a low stress life. And my disorder was caught early, this is the absolute most critical point. I should expect to go through hell for nearly a year, then enjoy a decade or more of remission before I have to consider followup treatments.

Is there a cure? No, quite simply. But it is treatable. Treatment consists of high dose injections of tailored chemotherapy (immune supressant) with a powerful dose of steroids, and followed up with a self harvested stem cell transplant. This is the 2016 ‘gold standard of therapy’ in Australia & doctors do a great deal of these every year. People are living longer with blood disorders.

You poor thing, you’ll be so unwell and lose your hair: First of all, stop that bullshit! Blood cancers are so far removed from populist tumour related malignancies it’s not funny. (really, it isnt). We don’t receive high doses of targeted radiation aimed at certain body parts – so we don’t generally ‘look unwell’ and we rarely lose our hair. Beware, we walk amongst you! We glow in the dark yes, but that just makes it easier for you to find us.

As time progresses, i’ll share more information about my disorder in the hopes it may be useful to people who are curious, or may be going through this themselves.

But for now, all I will say is “BLOODY BLOOD DISORDER” .