Friday, December 28, 2018

Scars - A Schwannoma Diary (#8).

They're a curious thing. Scars. 

Some are easy to see. They're in your face, confronting. They challenge you to consider them. 

Others are deeper. Hidden from view. Covered up to protect others from having to deal with them. 

To those who bear them - they mess with your head, your heart. 

They are uncomfortable. They are painful.

They are functional. They are protective. 

Scars are a curious thing. 


Wednesday, December 19, 2018

We're Through The Looking Glass Now - A Schwannoma Diary (#7).

It's day 2 post op now. My lines and drains are out and I am existing in a pleasant fog, supplied graciously to me by an assortment of Schedule 8 analgesics and miscellaneous medications. The bulk of the pain I'm experiencing comes courtesy of the 6 inch surgical wound they cut to access my spine as well as a headache that occasionally pounds in the background if I try to do too much. Because the lesion was intradural, I lost the bulk of my cerebro-spinal fluid during the operation. This takes time to replenish - hence the headache.

My legs can move, and I can walk - albeit gingerly - and without much confidence. But I can walk, so that is great relief number one. Since I had my urinary catheter taken out yesterday, I have managed to go to the toilet several times. It takes me a long time to finish but I can empty my bladder. I have control, so that is relief number two. I've yet to test my bowel so I can't report on that one just now. I'm keeping my fingers crossed. The other stuff - the *man* stuff? That will have to wait for the time being. But I would be lying if I said that it wasn't playing on my mind. 

How am I feeling psychologically?

At the moment, I feel drained - completely washed out in fact. I'm struggling to keep my eyes open, even as I write this - and it's mid morning! After, seeing the physio, having a shower, brushing my teeth and submitting to nursing tasks of observations, medications, wound care, I'm pretty much trashed. 

Mostly though, I'm relieved to be on the other side. This "thing" has consumed so much of my mental capacity and well being for so long, there has been no room for just living. I've neglected my kids - all their end of year school achievements and especially their anticipation for Christmas. I didn't go to get the tree like I usually do and a lot of things have happened around me. 

I mean, I've been there - but I haven't been there

I've neglected my wife. Emily has been holding fort, running around and trying to keep our household together, whilst tidying up all her loose ends at work, preparing for Christmas and worrying about me. She is a very pragmatic woman, not often given to overt displays of affection. She expresses her love though in her devotion to the household, the family. She often moves in a quiet way and it's easy to miss the things she does. Everything she does is done with love. 

I need to be more aware of that. 

There have been so many wonderful people who have reached out to me these past few days, from all across the world, sending messages of encouragement, love and best wishes. I'm overwhelmed with gratitude for them. 

I hope to be home for Christmas. I have to make it up to my family for all the chaos I have caused them.

I have to stop now. I'm dribbling saliva over my keyboard.


Sunday, December 16, 2018

The Alabaster Elephant - A Schwannoma Diary (#5).

My wife bought me an elephant yesterday. We stopped by an Oxfam shop in town during a last minute excursion to finish up our Christmas shopping.  

It's a small carved elephant, one with an even smaller elephant inside it's body, which you can see through the intricately carved lattice work on its flanks. It has its trunk turned upwards, a sign for good luck, according to Hindu culture. It's hand carved, courtesy of some sort of co-operative in India that provides these and other trinkets to the Western market, with proceeds from each sale going back to the individual artisans who make them. 

I've long been fascinated by elephants. Their intelligence, their gentleness, their strength. I've even had the privilege of riding an elephant. It was a few years ago now, during  a trip in Thailand. It was one of those experiences that seemed a lot more special than it probably was. I had a moment with this animal. It wrapped its trunk around me and wasn't going to let me go in a hurry. I had thought we'd bonded. It was probably trying to squeeze the shit out of me.

Where am I going with this...

I've packed that elephant into my suitcase for tomorrow. I don't even know if I'm superstitious but, I figure, it's worth a shot...the whole good luck thing and all.

I've packed my pyjamas. A couple of pairs in fact, along with some loose clothing that won't be too hard to get into. I've put in my tablet and my Bluetooth keyboard. I might get some writing done while I'm recovering...I probably won't. I've put in my copy of Dostoevsky's The Brothers Karamazov and Solzhenitsyn's The Gulag Archipelago - another gift from my wife. My sponge bag. Some L'Occitane products. I have standards.

I'm scared. More than I've ever been. This is real. This is real? Surely there's been a mistake. The scans are wrong. They got the wrong patient. The tumour belongs to somebody else.


There's no mistake. 

This is real.

My kids are fighting over some Christmas paper. They're screaming at each other. Meanwhile, the dog is whimpering and whining, wanting to be fed. The TV is too loud. Builders working on the house next door are using an electric saw, a nail gun. My son is trying to follow the cricket, demanding quiet.

Inside my head...silent chaos. A thunder storm of fear that seems more suited to a 15 year old boy than a forty...something...year old man. I'm standing on the edge of a volcano, looking down into the maelstrom. 

I've take the alabaster elephant out my suitcase. I'm holding it in my hand.

The elephant seems calming. They are a calming animal. 

Aren't they?


Friday, December 14, 2018

String Theory Nineteen Eighty Nine - A Schwannoma Diary (#4).

In his 2002 memoir, "Lucky Man", actor Michael J. Fox recounted an moment, the night before he underwent delicate brain surgery in 1998. Lying on his hospital bed, he recalled listening to the Pearl Jam song, "Given To Fly" over and over, drawing comfort and strength from the music and the lyrics as he prepared for the surgery that would alleviate the symptoms of his Parkinson's Disease.

In 1989, the night before I was to undergo my original operation to remove a spinal cord tumor, I remember sitting on my own hospital bed at the Royal Children's Hospital in Melbourne. I remember looking out through a big window, across the park lands - the city's twinkling lights beyond. I had Vince Jones', "But Beautiful" playing on my Walkman. It was kind of accidental that it became a poetic moment. Jones' soothing, smoky jazz vocals, accompanied by Paul Gabrowsky's languid piano. I (thought I) was a deep kid.

As a callow 15 year old from the country, I had little comprehension of what was about to happen to me. I was scared - but I was scared of the unknown. I didn't appreciate the task facing the surgical team, nor could I foresee what would come after the surgeon removed the tumor. For a brief moment, I just thought it was cool to be listening to jazz while looking out across the Melbourne skyline.

All these years later, reflecting on that 15 year old version of myself - it's like looking at a stranger.

That earnest youth has been subsumed by a terminal, world weary cynic. I'm no longer given to moments of musical romanticism, which might seem hard to believe, given that I've pursued a career outside of nursing as a romance novelist.

Personally, I don't think I draw inspiration from music the way I once did. I don't connect with it on an emotional level. Like, I still love music and I enjoy my favorite genres whenever I hear them. But they're not all consuming the way they used to be. They don't get me in the zone. I'd just as soon listen to a podcast conversation between two people tackling a philosophical conundrum.

Maybe I've lost something that I should try to recover - a sense of the power of music to calm and encourage reflection.

(image credit: Noah Sillman).

I know too much - both as a man who has the burden of lived experience of this kind of thing and as a Nurse, with over twenty years of accumulated knowledge of medicine and clinical experiences. I know what to expect surgically. The stakes are high. I know the recovery will likely follow a similar path as it did back in 1989. I'm aware of the psychology of trauma. The slow grind to get my muscles and limbs working again. The *joys* of incontinence. There are questions too. Fears.

What comes after?

Can I overcome this?

Will I be whole once more?

Will I make love again...?

I'm scared. I'm scared of the known this time.

Maybe I'll listen to Vince Jones once more. On cassette - the way I did before. Do they even make Walkmans anymore?


Wednesday, December 12, 2018

A Parasitic Relationship - A Schwannoma Diary (#3).

I think I'm entering a phase of being angry now. 

I met with my neurosurgeon this afternoon to review the MRI scans that were captured over the weekend. 

They established the geography of the space occupying lesion at the base of my spinal cord. Even on the scans, it is a parasitic looking little shit. In fact, it's not so little. It's something in the order of an inch to an inch and a half in size - a dark, lobulated mass that is being fed by a rudimentary blood supply and, most likely, my cerebrospinal fluid - the fluid that bathes my spinal cord.

My little parasite - not the circle, the thing in the circle.

The theory goes that this tumour is one that has degraded over time. It started out as a healthy (???) schwannoma but some where along the way it degenerated into this cystic lesion. There's still a lot that is unknown about it. An MRI will give you good images and you can make certain assumptions about the make up of the structure and tissues featured in them. But they're assumptions. Guess work. Estimations.

We won't really know the composition of this thing until it's removed from me and it can be examined. 

I want to anthropomorphize it - to give it an evil agency so I can justify being angry and hateful towards it. 

But it's not evil. 

It has no agenda. I mean, it couldn't even grow properly, like a normal tumour would. It's a pathetic reject - a retarded tumour. It's just there. A stupid genetic abberation of my own making.

I can't sustain my anger. I end up feeling empty, perhaps a little bit guilty.

My retarded tumour.

The surgery has been set for next Tuesday, the 18th of December. I will undergo a laminectomy whereby the surgeon will re-enter my spine through the incision that was made 29 years ago. There's a lot of old scar tissue from that original operation that may or may not cause some problems. Scar tissue is not forgiving. I'll be under an anaesthetic for 3 - 4 hours. It could be less if my surgeon can get in there without too much trouble. Then, I'll stay in the hospital for 5 - 7 days.

That's where my stomach drops. Having to tell my children was crushing this evening. Christmas Day won't be the same. I won't even be home for it. We won't be able to observe our little traditions. Worse still, our planned interstate vacation looks unlikely to proceed. This is particularly upsetting. I haven't seen my parents or my brother for 8 months. There are old friends I haven't seen who I was looking forward to seeing. I haven't reconnected with home in all that time and it hurts. Some people don't understand how much it hurts.

I've noticed something about hospital forms - they never allow enough space to write your email address. I always end up squashing up my writing to make it fit. I'll have to bring that up with someone I reckon. 


Monday, December 10, 2018

Billy Idol In A Tube - A Schwannoma Diary (#2).

If you've never had Magnetic Resonance Imaging (MRI) performed before, it's a difficult experience to distill into a basic description. Having thought about this over the past few days, I think the best way to sum it up is in two words - a peaceful panic. 

I consider myself a veteran of the MRI machine, having undergone more of them than I care to count over the past twenty or so years. So, I no longer experience the crippling claustrophobia I felt when I first entered one of these machines back in the 90's. That's not to say the feeling is totally absent. I mean, I still lose my shit if I get tangled up in a sleeping bag, so I retain a certain, unhealthy fear of tight spaces. The MRI and I have, somehow, come to a mutual understanding. We don't fuck with each other.

Entering the two foot wide tube on Sunday was kind of a mundane exercise - if you could call it that. I went into this scan with a clear sense of the objective. We were to map the tumor sitting in my spinal cord in preparation for surgical intervention. Knowing this, and having the clinical knowledge that comes from over 20 years as an Intensive Care Nurse, I didn't feel a great deal of anxiety. 

Once my entire body was delivered into the entirety of the machine - then, it was a case of, "Oh Shit! I'm in this confined space for at least half an hour and I have to lay completely still."

 Of course, they do give you a panic button and headphones - mainly to block out the frightening sound of the magnets circling at insane speeds around your body - but also to pipe music or radio talk back of your choice into your ears as a measure of comfort. I chose the broadcast of the Test Cricket between Australian and India at the Adelaide Oval but the radiographer had a difficult time actually finding the station. For several minutes, I had FM radio blaring Billy Idol's "Hot In The City" in my ears. As I was feeling an uncomfortable warmth in my pelvis (real or imagined), I thought the song was appropriate.

Somehow, the radiographer fiddled with the dial and, like that first bit of radio static you hear on Pink Floyd's "Wish You Were Here", the Cricket broadcast was eventually found. 

Recently, I have been using a meditation app called "Calm". Like the many guided meditation apps that are available at the moment, this app focuses on the breathing as your centering strategy, while voice guidance - provided by the wonderful Tamara Levitt - lulls you into a state of relaxation and...well...Calm! throughout each, roughly 15 minute session.

This method of breathing and focus came in handy while I was in the machine. I found I was able to push away the chaos of the magnets spinning around my body, assaulting my tissues with their insane fields of energy, and find a state of being that helped. The claustrophobia - the panic of feeling claustrophobia - peeled away from me and, funnily enough, even the sound of the magnets became a tool with which to enhance my state of calm. Of course, the cricket helped as well. 

Not Billy Idol though. He's a tool. 

The set of pre and post contrast images, focusing on the lesion in my spinal cord, were good images. At first there was a little confusion because the tumor didn't take up the contrast as readily as was expected (tumors are inherently vascular). It has become cystic, space occupying, which accounts for the leg weakness and pain, the urogenital dysfunction and my lazy bowel, so it has to be dealt with sooner rather than later. 

I meet with my Neurosurgeon tomorrow to discuss the results and go to the next stage.

(image credit - Getty images.)

Emotionally, I'm ragged. I'm at war with my thoughts - my anxieties. Knowing I have this parasitic "thing" within me does not encourage good tidings. I can't plan anything - certainly around Christmas or beyond. At a time of year where everything is insane and people have to think 12 steps ahead, I'm forced to live day to day. Plans I've made with the family have to be held in stasis until we know more and I feel a pressure cooker of expectation. Most of this of course, is in my own head. I don't want to let people down - most of all my kids who, at this time of year are filled with Christmas butterflies. And time always moves slowest when you don't know the answers to their questions.

I'm also asking the question, why did this thing come back? That has been playing on my mind more and more and, of course, that can't readily be answered. I know I shouldn't ruminate over that too much because there's no use in it. It came back and that's all there is to it.

I listened to Joe Rogan talking with Jordan Peterson over the weekend and they were talking about the nature of struggle. Peterson was saying that struggle is an inherent part of human nature - of being - and it's how we approach the struggle that determines our character. I'm trying to approach all of this with strength and focus. It's elementary really. This thing has got to come out. I've got to accept the struggle and navigate the path through it. 

I've got too much living to do. 


Thursday, December 6, 2018

The Twenty Ninth Year - A Schwannoma Diary.

Where to begin with this...

So...I've had to digest a lot of news in a short space of time this past week, so my thoughts are a jumble. I'm probably going to struggle to express myself coherently here. But, bare with me. Okay?

There's a background to this story that I'll relate to you in a potted form. It's a story that began back in 1989 when I was 14 years old. 

I was a reasonably active kid. Good at swimming, average at football. Decent at cricket - though nothing to write home about. I was always a little clumsy, uncoordinated. I had a terrible drop punt and I used to trip and fall over myself a bit. It was embarrassing sure, but I didn't get too worried about it. My Star Wars game was always better than my Australian Rules game. One morning in late May, during a junior football match, I suddenly collapsed and was rendered unable to walk. After a flurry of medical examinations and a series of scans, I was diagnosed with a tumour in my spinal cord - a schwannoma. It was growing out of the spinal cord itself, it's parastic tissue intimately emeshed with the cord. It was to turn my teenaged life upside down for the next two years. 

I had two operations back then to remove the tumour and clean up some scarring that caused some issues afterwards. I had to re-learn how to walk. I had to manage a few functional issues involving my bladder and bowels and I somehow had to navigate the psychological comprehension of a traumatic experience that upended my adolescence.

I was told at the time that this tumour was a fluke - a once off. Owing to its slow growing nature, there was zero likelihood of this thing ever returning in my lifetime. Aside from a few functional issues, I should be able to lead a normal life.

Twenty Nine Years later...

I've documented my recent *exploits* here with my throat - how a dysfunctional branch of nerves in my neck caused havoc with my ability to swallow, speak and breath effectively. Having largely conquered that episode, I was referred to a Neurologist to investigate the underlying aetiology of this nerve dysfunction 

I was concerned there was an inflammatory causative factor for the whole throat thing. Some additional symptoms I'd been experiencing - including visual deterioration in my left eye, a sudden inability to taste or smell, some incontinence and *other* dysfunction - led my neurologist to want to rule out that very inflammatory pathology. We discussed Multiple Sclerosis, even Parkinson's Disease.

I agreed to undergo a battery of tests in order to build a case against these. A series of blood tests, urine, a lumbar puncture, neurological exam, an MRI. I underwent these tests, determined to get to the bottom of this mystery, because I didn't want it weighing on me any longer. This had been two years out of my life, in which - you know - I would've rathered been focusing on something else. 

I'm at a stage in my life where there's not a lot that shocks me anymore. As an Intensive Care Nurse, I've seen a fair bit - maladies, trauma, disease, the expected and the unexpected. 

I received a phone call from my GP last week, requesting that I make and appointment to see her. I sat down with her after a long night duty shift on Wednesday morning.

The MRI scan found a tumour, located in my lower spinal cord - very close to where the original schwannoma had been found in 1989. 

A tumour - that was never supposed to recurr.

I was shocked, stunned, numb.

Remember? This was never supposed to happen. 

Things have moved fairly quickly. I have met with a Neurosurgeon, and we have discussed my options, which I might say, are pretty straightforward. I will have to undergo surgery to remove the tumour. Plans are afoot in that direction and I'll be undergoing a second series of scans later this week to *map* out the exact geography and extent of the lesion. It is growing out of the spinal cord itself, so the surgical team need to know - to the millimetre - how emeshed this mass is.

At the moment, I'm approaching all this with a clinician's mind as much as I am a patient's. It's a confusing state. I've expressed little outward emotion about the diagnosis so far. Rather, I've been digesting the reports and the MRI films. I've mulled over the technical aspects of the prospective surgery. I've weighed up the chances of this thing being a malignancy. By erecting a veneer of distance between the diagnosis, I can keep my emotions in check.

This is not to say that I am completely divorced from them. This recurrence has implications beyond the mere presence of the tumour - implications that I can't bring myself to process just yet. There is, deep down, a maelstrom of emotions.

There is fear. There is disbelief. There is anger.

My mind teeters on the edge of this chaos so I'm doing everything I can to focus on the process dispassionately.

This may seem strange, but I'm more worried about more fundamental things - like, how I'm going to get through the next little while - I mean, it's bloody Christmas. I have to pay the bills, support my family, give my kids a Christmas to treasure - this Christmas is certainly going to be interesting. 

I want to get back on my feet as soon as I can. I can't stay idle. It'll drive me nuts. I can't allow this thing to upend my life again. 

The stakes are too high.

Is this a diary? I think this is a diary. Let's call it a diary.

I can't breathe now. I need to stop writing. I'll talk a little more soon.