Hardcore? I should think so!

It feels like a lifetime since I shifted myself onto the operating table, and lay there shaking and bawling my eyes out, terrified as I was about to have a craniotomy. My first time in hospital, and I was having brain surgery. Frankly, it brings tears to my eyes even now.

It has changed my life profoundly, I am different. In May, with nothing else lined up, I quit my job that was making me miserable. It was one of the best decisions I have ever made. And so began Sarah’s ‘Summer of Love’. I decided to take time off from work, and do only the things I loved. As a designer, I worked on my creative passions – whiled away hours in front of my sewing machine, and took regular trips out with my camera. Every now and again I went out and networked with others in the industry, or picked up small design jobs to keep things ticking over.

I ran, went spinning, and generally sweated until I was soaked through. I also joined a gym and fulfilled a longterm dream of working with a personal trainer. He did my general fitness assessment, and jokingly asked if I wanted to get started the next morning (a Saturday) at 6am. I don’t think he expected “ok then!”. Three months later and he’s still stuck with me.

Through all this I found my passion for design again. Now I do all the things I love AND am busy as a freelance designer. Life is balanced and I am happier, healthier and fitter than I have ever been before.

People sometimes comment that I am hardcore, impetuous, or that I ‘bounce off the walls’. Of course I bloody do! You think that’s a bad thing? I work out five times a week because I love it, I have more energy than I know what to do with. I pick up projects, and work with people that inspire me. I make better money than I ever did in my miserable job (just a nice side effect). But really, you don’t know what hardcore means… hardcore is having a head full of staples, throwing on a hat, and taking the dog out in the snow.

Update, 10 months post-op

My 10 month anniversary flew by so fast I didn’t even notice – in fact a fellow Meningioma blogger had to remind me – thanks Lesly!

On the 28th Nov, my actual anniversary, I was preparing to head to NYC to direct a photoshoot for one of my clients. That pretty much says it all, I am back on my game at work leading a huge project and enjoying not having any health issues holding me back.

It’s been a turbulent year though, and I still struggle with my sense of perspective at work. Bizarrely I care WAY too much about it. You’d think I’d have a healthy sense of “this isn’t brain surgery”, but apparently not. Oh well, let’s just call it work in progress!

I had a follow-up with my neurologist last month and there is no sign of tumour regrowth! There is also no sign of my sense of smell, even though I still have one olfactory tract left. More and more I realise that I don’t taste much of my food. I rely on my memory of food tastes, and texture and colour are everything. When I taste something new I often have no idea what it is (this happened the other day). Not because I couldn’t place the flavour, but because I just couldn’t taste anything! So now I accept it, I have no sense of smell and I can’t taste much either.

My next surgical follow-up is in April 2010, and so far everything is good 🙂

Update, 4 months post-op

At the 4 month mark, one of the biggest changes in my life is my perspective. Every day is a gift, something to make the most of. Things that I hummed and ahhhed about in the past I now just do. My tolerance for unhappiness is gone, whatever irks me must be solved.

Sometimes I stop for a moment, and the realisation hits me that I had brain surgery not so long ago. I don’t know that it is something you can ever truly wrap your head around. You can barely see the scar in my hair now, in fact the only give-away is to the trained eye, and in the form of a scar on my neck from the central line.

My sense of smell has yet to return, but hopefully I can get some more answers when I see my new neurologist in a couple of weeks. *New* neurologist because I was less than impressed with my last one, and didn’t feel like seeing a doctor in the long run whose opinion I simply did not trust (Lesson = shop around for good doctors like you would anything else). My new one is also affiliated with St. Michael’s Hospital which will make co-ordinating him  with my surgeon and records SO much easier.

I am now back at work. I have been lucky to be able to slowly build my hours week by week, starting at just 12 hours to full time by June 1st. It certainly has not been without it’s challenges though, and I really feel it has been an internal personal and professional battle.

One of these personal battles at work has been with my brain of course. It doesn’t want to focus for long, and is easily distracted by the sights and sounds an open plan office brings. I feel anti-social, but putting the headphones on has helped, now if only I could wear blinkers to tackle the peripheral vision!

Then of course there is the exhaustion. Before I was back at work I was able to exercise several times a week, either out on my bike or running. As work hours increase however, my energy for exercise goes down considerably. So I have learnt that I can only increase one thing at a time. Right now, frustrating as my inner-athlete finds it, that has to be work.

I am back spinning at Quad however. I would normally have a pretty defined cross training plan, but I have decided to just go with what feels right. Spinning while tough after such a long break, is where my motivation is taking me. It’s a sport that takes not only takes physical endurance, but mental endurance too. If you are mentally focused and have a clear mind, you can physically achieve so much more (which is why talking during spin class is a big no no). As I already mentioned, my focus isn’t great right now so spinning has double benefits for me.

I have also started sewing at The Workroom. Much of what I have read about recovery involves flexing that brain and learning how to do new things. It helps get your mind out of the same old patterns. So I have learnt how to use a sewing machine properly and am quickly getting a buzz from making things for myself.

A major side effect of all this is the need to do something worthwhile, to balance out the industry in which I work. I really need to do some work that gives back and makes a positive difference. So, I am now a volunteer for The Brain Tumour Foundation of Canada in a variety of capacities. They have lots of ideas on how I can help them out, which I am really excited about.  There is no better cause for me than this one where I can combine both my personal and professional experiences.

In a few weeks my husband and I are off on our honeymoon. It was supposed to be Christmas in Paris, but due to my diagnosis and being warned not to fly, we had to cancel. Instead it will be Summer in Paris. Now I am off to make a new purse for the trip 🙂

Photograph your progress

Today I was reviewing all the photos I have been taking during recovery. It’s amazing to see the progression from “normal” person (with a brain tumour), to post-op pictures, right through to today.

I looked so happy with staples crossing my head, and am even happier now to be able to show off my dent, I pretty much force people to feel the metal pins on my forehead. Hey, if you have war wounds you should flaunt them!

So, if you are facing the same journey as I did try and take photos throughout. On a day you are feeling sorry for yourself you can look back and remind yourself how freakin’ tough your are, and how far you’ve come.

I found this prophetic photo today, it must have been taken about a year ago not long before I got married. If you haven’t worked it out I am looking directly at the site of my craniotomy.

Final results on paper

This week I received copies of my surgery notes, they are fascinating. I wish I knew more so I could understand them better. It’s long, but this is the operative procedure summary:

“BrainLAB neuronavigation, right frontotemporal pterional craniotomy, subtemporal decompression, tumour removal, duraplasty, and ICP monitor.”

My most recent CT scan notes gloriously state, “Resolution of postoperative changes and edema, with no evidence of residual or recurrent mass lesion identified.” 🙂

Recovery by numbers

People often ask what I have been doing with all my time off work. Well, recovery from major surgery takes time and these are the kind of numbers that get you there…

1 Meningioma
1 Craniotomy
4 CT Scans
1 MRI
1 ECG
1 Chest x-ray
3 GPs
1 Neurosurgeon
1 Senior Neurosurgical Resident
5+ Interns/Residents (doctors in training)
3 Anesthestists
10+ Nurses
2 Neurologists
1 Social Worker
1 Physiotherapist
1 Pharmacist
10 Receptionists 
6 Imaging Technicians
3 Film library people
1 Naturopath
1 Osteopath
1 Cleaner
4 hours of surgery
1 Night in Neuro ICU
2.5 days in hospital
35 Staples
5 Stitches
3 Titanium plates
6 Titanium screws
3  Imaginary smells
3 Prescribed drugs
2 Over the counter drugs
7+ Vitamins/Supplements 
4 Homeopathic remedies
1 Complete diet overhaul
1 Husband
1 Dog
3 House guests
2 Provincial health cards
3 Health Benefits case workers
1 Dent
2 Boxes Purdey’s Chocolates
73+ Blog post
112+ Blog comments
4,500+ Blog hits (not bad going for a measly blog about my brain)
13 weeks off work

Yes, that’s 40+ medical professionals I have seen in the last 4 months. Those are the people I remember through my drug induced haze, which means there must be a good 10 more that I don’t recall.

What should this list tell you? It is essential to know how to navigate the health system.

Back to it

When I went for my first CT scan that eventually led to my diagnosis, I had lived in Toronto for less than 3 months. I still had my Alberta health card, and had only just moved into my apartment. Frankly there is nothing like finding out you have a brain tumour when you are on the other side of the country from your best friends and family. Add to that the fact that I was grounded and could not fly to see them.

It was just over a week ago now that the neurosurgeon gave me the all clear saying I could get back to life as normal. No restrictions.

I can now drink caffeine and alcohol, exercise, drive, fly, and work again.

The day after receiving the good news I booked flights to Alberta and left 2 days later. It was such a relief to be able to get away after being stuck here for 4 months. Now I hate flying as it is, but flying for the first time after brain surgery gave me a whole new level of anxiety. 

My head was fine however, and for once I didn’t throw up (yes, I’m “that” person). The titanium clips in my head didn’t even set off the machines at security screening.

Caffeine I have passed on… for now at least. I stopped craving it after about 4 weeks so I am going to attempt life without it. I took my Dad’s C350 out for a spin, drank wine, and arranged to be back at work part time in 2 weeks.

Today I checked my final conquest off my list. A successful 4km run. It was perhaps the shortest run I have done in years, but I’ll take it, all things considered. I am glad to get the first run under my belt so I can now start rebuilding my fitness without trepidation. People and busy places can make me tired, running it seems, does not. 

When I look back it is incredible to think about what has happened in the past few months. The unlikelihood of it all, the fact it happened to ME. The fact I happened to move to a city with a top medical community, that I found out I had a brain tumour of all things, that it was successfully removed… and then experienced (in the words of my surgeon) a remarkable recovery. Here I am able to tell the story.

Incredible.

Life is amazing.

The neurosurgeon says…

The tumour was 100% removed, no residual tumour remains.

Pathology states that the tumour was definitely benign & WHO Grade 1.

The cerebral edema is now 100% gone.

Incision has healed perfectly.

I can now drink caffeine, and alcohol. Can’t go too crazy on the alcohol though as it lowers seizure threshold. I can also exercise without restrictions, just have to build up like anyone who has been off exercise for a few months.

Also…

The fact I am having olfactory hallucinations means my brain has some unusual electrical activity going on, it’s probably re-jigging itself. Add to this the fact I can taste food means that my sense of smell will most likely come back. Apparently if your sense of smell has truly gone, food tastes like straw. Being a neurological issue it could take a year the prognosis looks good!

I am one seriously happy lady! My life of riley is over though, bittersweet, bittersweet.

From diagnosis to today in pictures

Before surgery Meningioma, bilateral frontal edema.

Day after surgery Pneumocephalus (air in the cranial cavity), hemorrhage, bilateral frontal edema stable. *Slightly different slice.

Day after surgery Lots of staples, and 3 plates/screws.

Today 3 plates/screws

Wood smoke

My olfactory hallucination has changed. I noticed a couple of weeks ago that the chemical smell had disappeared, and proceeded to “enjoy” a week of nothingness. Then the smell of chemically wood smoke (ish) arrived. It started very quickly and instantly made me feel ill for about half an hour. That feeling passed*, but the wood smoke remains. When it is at it’s worst I can taste it too! Ewwww.