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, 1+ years post-op

Well my 1 year anniversary came and went without big occasion in January. My husband and I went out for a quiet dinner to celebrate, something that was hard to imagine a year ago.

This week I had my 1 year follow up with my surgeon. My MRI showed a clear head with no sign of tumour re-growth. My next follow up will be in 2 years, and I suspect I will continue to have these follow-ups for 10 years based on a 7% risk of recurrence in that time frame.

Still no smell, but you know what? It’s been so long now, that I don’t even think about it.

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 🙂

Il y a quelque chose dans ma tête…

When we were in Paris recently, my husband and I decided to go back to the Eiffel Tower where we were engaged. Wouldn’t you know, they now have metal detectors before you can go up and see the view. I walk through and “beeeeep”! For a split second I forgot and tapped my pockets looking for change, then it hit me. My head! “Euuuhhh, Il y a quelque chose dans ma tête…” as I point frantically at my head. The security guard looked at me like I was crazy… and thankfully took pity and let me go through.

A trip to the neurophysiology department

Last week I had an EEG (electroencephalogram) which is a test that detects abnormalities in the electrical activity of the brain. It is the first step in trying to work out the cause of my olfactory hallucinations. If it is due to seizures, it will show up in this test, and seizures mean I might have to go back on anti-convulsants, which I DO NOT want to do. I categorically hate drugs and how they make me feel.

It’s a bizarre test, that doesn’t hurt or have any side effects but it’s boring and time consuming. When lying on a bed, the technician applied 30 electrodes to my head using a huge amount of goopy paste to make them stick. They were all through my scalp, on my forehead and temples, and under my chin. I wanted to take a picture of myself but she woudn’t let me as it is against hospital policy. It would have made for an excellent photo!

During the test you just lie there, and follow instructions to open your eyes, close your eyes, open your eyes, close your eyes, open your eyes, concentrate on a spot on the wall… thrilling I know. Then while your eyes are closed they flash lights at you at an ever increasing rate. This was the most uncomfortable part of the test as normally you would be able to cover your eyes or look away, instead you have to lie motionless and endure. The technician then turned off all the lights and I had to lie there for an exorbitant amount of time – motionless and with with my eyes closed. It was maybe 20 minutes, but could equally have been just 10, all I know was that my head started to itch and I couldn’t do anything about it!

I get the results at the end of October when I next see my neurologist again. Fingers crossed – even though I don’t believe in this, what’d done is done and it’s not in my control to change it.

Update, 6 months post-op

Time flies (and not only when you are having fun), it has been 6 months already. I just got back from my 3 week honeymoon that we had to cancel. It was just what the doctor ordered, and I was able to totally forget about what life has thrown as of late.

I now feel better than ever, better than I ever did before surgery. I continue to try to re-build my fitness and to be honest 3 weeks in France and the UK, and a bottle of wine a day certainly did not help! But walking or cycling everywhere, and with regular spinning sessions, I am still fitter than many people I know, even post brain surgery.  

That feel good vibe can also be attributed to 8 months of a pescetarian diet, and a large daily dosage of omega 3’s, vitamin C, D and B’s. If I run out of any of them, particularly omega 3’s, I really notice it and find myself craving fats. What the brain needs, the brain gets!

I still have no sense of smell and have an EEG in a couple of weeks to make sure my olfactory hallucinations are not seizures. My neurologist does not think this is the case, but it’s good to rule out. We can then move onto other investigations into the cause and potential return of smell into my life.

My next CT and follow up are already booked for April 2010. I am impressed with St. Michael’s Hospital and my doctors, and really feel like I am in safe hands.

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 🙂

Sensory experiences

As a rather creative child, I would wonder whether everyone else saw colours in the same way as I did, was my yellow the same as theirs, were bananas (my version of) pink to some people, and (my version of) orange to others? My imaginative thought also extended to taste and smell. Do strawberries taste the same to me as someone else? How can people NOT like strawberries, they must taste like smelly cheese to them!

Now as an adult who has lived life with a keen sense of smell, but who has since lost it, I have come to rediscover this line of questioning. Smell really helps to define an experience. I was leaving an underground parking lot with my husband last night and he commented as we walked down the stairs, that it stank like pee. To which I responded, “Really? But it looks quite clean”. I have to rely on other stimuli to tell me the things that smell used to do, and frankly they are not proving to be so reliable.

More and more I get the idea that I am getting completely different sensory experiences than others, especially with these olfactory hallucinations. I was in a workshop listening to a presentation the other day, and my chemical smell was particularly strong (damn that random electrical activity). Afterwards I realised it had totally changed my perception of the place, it changed the way I felt emotionally, and how I behaved.

If my smell ever comes back, I am going to try aromatherapy because I can attest that chemicals make you feel on edge and uncomfortable. Lavender, peppermint, tea tree… mmm sounds lovely.

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.” 🙂