Electric Dreams - A Schwannoma Diary (#14).

I met with my neurosurgeon again earlier this week to review the series of MR scans and X-Rays that I had taken last week of my brain (I have one), my spinal cord and column and my hips. Given that a major feature of my neuropathic pain has been an intense ache in my left hip, we needed to rule out any form of orthopaedic pathology. Fortunately, both my hip joints are in excellent condition so the source of that pain can definitively be sheeted home to my damaged spinal cord.

So, the only thing left to consider was whether to proceed with the Medtronic Intellis spinal cord neurostimulator platform, which I covered in my last post.

We're going to proceed.

My neurosurgeon is confident this implanted neurostimulator will be the best option for me and that I am a good candidate for it. I'm otherwise healthy, have a reasonable amount of physical fitness, thanks to my swimming and, having reviewed and considered the technology for myself, I am mentally prepared to accept the presence of this implanted device in my body.

The biggest risks of the neurostimulator remain the possbility of the leads and paddles being dislodged or migrating, though my neurosurgeon has assured me that she will make sure they are anchored securely. I'll have to watch how I move in the first couple of weeks after the surgery to allow the healing process to further ensure the leads remain locked in place. There's the potential for infection at the wound sites, which is a consideration for any kind of surgery, so I'm not overly concerned by that. My intuition as a Nurse will ensure that I take care of myself. A lesser risk is that I won't adapt psychologically to the presence of the neurostimulator in my body. It has been reported in other patients who have eventually had their devices removed because they couldn't accept it.

As I write this, I feel dispassionate about it. The chronic neuropathic pain I've been experiencing has been so debilitating for me both physically and mentally that I will try anything if it offers a chance for me to escape it. And, being a massive geek for anything technological helps.

Part of me keeps visualizing this as the outcome of the surgery...

(image credit - issam kh).

...when the reality will be much more like this...

(image credit - Medtronic)

...which is still a radical proposition when I think about it for any length of time...like, right now.

It's all happening next Tuesday, August 20th (it's early Thursday morning as I write this). The theatre has been booked. The implant has been ordered. The requisite medical and nursing staff will have been organized - all of them colleagues of mine, which makes this next step in my little journey a bit different.

The Nurse will become the patient once more...

Stay tuned.

DFA.

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?

DFA.

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. 

DFA.

State Of Play.

So it's been six weeks.

Six weeks since the surgery that turned my life sideways. I was going to say upside down, but that sorta seems overly dramatic and not altogether justified. 

Or maybe it's just me being uncomfortable with the significance of all of this. 

So where am I at?

I still can't talk with any decent quality. I'm good for a few rasping sentences but I'm stuffed after about an hour a day and then I just can't make it work. Which presents a problem because, before all of this surgery, I committed to an author talk at a suburban library here in Adelaide later this month. I still want to do it so I've been resting my voice as much as is humanly possible and I've been working on my exercises three and four times a day in order to stretch the muscles in my throat because I really want to do it. I feel as though I need to do it. 

(Week 3. Would you wanna kiss this??)

My throat hurts like a mother f***er - all the time. 

I saw my surgeon earlier this week and he passed his camera down into the area where he operated. While it's healing, it's become inflamed and hyper sensitive due to some reflux I've developed. I'm now popping Somac daily (a protein pump inhibitor) to address the reflux and I'm swallowing Gaviscon four times a day. The Gaviscon is a thick cement like liquid - that tastes awful - which coats my throat and protects it against acids my natural desire to actually fucking speak.

It's ironic that the exercises I'm supposed to be doing are actually contributing to all of this. 

Oh - and I think I'm addicted to coedine.

I'm popping Panadiene like a junkie - well it feels that way - even though I'm actually sticking to the requisite recommended dosing of 6 hourly. The pain has localized itself to my throat, in the vicinity of my voice box - what's left of it and it feels like razor blades everytime I so much as swallow my own saliva. You would be amazed just how active the tissues and muscles of the throat are, even when you aren't doing anything. It's nigh on impossible to get any respite from it. And, of course, as all knowledgeable persons would know, Panadiene plays havoc with one's bowels. I am so constipated that I've added several classifications to the Bristol Stool Scale. Our toilet has become the equivalent of a missile testing range when I'm in there. It's hazardous.

I hate eating. 

I don't enjoy food at all right now. Between the pain from my still healing palate and my throat, meals are just a chore. It all tastes like metal and flesh. I approach the act of swallowing solid food with dread so much so that I'm starting to avoid them altogether. 

But it has done wonders for my waist line. I've dropped 5kgs in the past month and I'm still shedding.

Suck on that Michelle Bridges!!

I'm back at work. 

Because I do night duty, I can avoid talking for the most part outside of handover and introductions to my patients. They have been very understanding and have kinda dug having a largely mute ICU Nurse caring for them. My colleagues have been hugely supportive and somehow make it work so that I can work. 

(Walhalla - where I want to set my new novel.)

But I'm sinking into a state of functioning depression. 

I want my life back. Beyond waking and doing what I have to do to make it through each day, I'm not motivated. I am trying to write. I've largely mapped out a new novel but it all feels like a chore right now and I don't enjoy it and that's dangerous for a writer. I don't get out much. I clock watch a lot, waiting for the next time where I can pop some pills or drink some cement to ease my dysfunctional throat. It all weighs heavily on my mental well being. At the moment, life consists of just getting through and I want to do more than just fucking get through...

You know...?

DFA.