spinning

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 🙂

The neurosurgeon says…

April 2, 2009

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.

Before surgery Meningioma, bilateral frontal edema.

ct1

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

ct2

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

jan29th_side

Today 3 plates/screws

april1_side2

Ask your nurse…

March 23, 2009

I wish I had this list when I was in hospital. There are a series of things you should ask your nurse that will positively impact your stay in hospital. Toronto Expect RN’s Consulting Inc. provides this handy list:

  • Informed Consent explained, and what Doctors don’t tell you
  • Patient’s have more rights than they think…
  • Personal EHR – viewing your chart
  • When and where to get a second opinion
  • Medical and medication errors, what you should know
  • Infection control in hospitals, behind the scenes
  • Keeping track of all the personnel who are assigned to you
  • Communicating your concerns and complaints effectively
  • Accessing your complete medical records
  • Individuals and agencies with the authority to intervene on your behalf
  • Getting information on tests and results made easy
  • Hospital Secrets -finding out what went wrong when you feel something is amiss
  • The importance of establishing Power of Attorney for Personal Care

More information can be found in their book “The Ultimate Empowered Patient” that educates Canadians who want to negotiate their health system in an informed manner.

Hospital: Part 2

March 13, 2009

I woke up after my craniotomy in neuro ICU. My husband was there, and at the ready. I have no idea how long he’d been waiting, but he went and got me ice chips thank god… I was thirstier than I had ever experienced before. 

Taking stock, I was surrounded by bleeping machines. I had a clump of wires coming over my shoulder, each one sticking to a sticky pad monitoring my heart rate. There was a blood pressure cuff, that took my blood pressure at the most inopportune moments. Then there was the tubes… I had an IV in the top of my left hand, one in my left wrist, one in my right wrist, and a central line stitched into my jugular in my neck. They were all attached to one kind of drug or another, Decadron, Dilantin, Morphine…

Next there was the plethora of things around my head. Most noticeably, there was a serious bandage around it. Not just any kind of bandage, but a compression bandage that came right down to my eyebrows and that covered my ears. It was so tight that it was pushing my eyebrows down so I could barely open my eyes! Luckily for me, a nurse came and chopped a bit off so I could see properly again.

The bandage hid a variety of sins. Of course there were the 35 odd staples riddled across my head. Then there was the wire that went into a hole in my scalp and plugged into a monitor that measured inter-cranial pressure, plus the tube that went into yet another hole and drained excess fluid. Couldn’t feel either of them, and when I found out they were there I really didn’t care, they had major jobs to do.

I know it is hard to believe, but my head never hurt! I had a dose or two of morphine because of pain in my neck. So it stays absolutely still, they put your head in a vice-like clamp, and in a totally unnatural position during surgery. My neck was SO stiff I could never have imagined it in my wildest dreams. It was all fine when my head lay on its left hand side, but try and straighten it? Holy crap! I had to support my neck with my hands while I moved my head with it’s heavy bandage.

Neuro ICU was a safe place to be, but not one where you get any sleep! Every hour, on the hour your dedicated nurse came by and did neurological tests. If you are lucky enough to be asleep, you are woken up and lights are flashed in your eyes. You are told to put your arms in the air, IV lines flailing all over the place, and the turn your palms to the ceiling. Next you have to move your legs and push your feet against the nurses hands. Did I mention, every hour on the hour? Then you hear other patients going through the same ritual. I heard a lot of “Lawrence, Lawrence, open your eyes for me please” that night. He didn’t seem to be doing so well. 

Everytime a nurse came by to do these checks I asked for yet more water, also asked their name, how long they’d worked in neuro ICU, what time it was, and generally got chatty much to their annoyance. Hey, if you are going to wake me up every hour I expect a conversation out of it!

In the morning my neurosurgeon and his interns came by. About 6 medical students in their neuro rotation stood in an arc around the foot of my bed. Dr Muller proceeded to tell them that “This is is the lady who presented with the olfactory grove meningioma and Foster Kennedy Syndrome. Forget the interns, I was the one asking the questions, “What syndrome? What’s that? You never said anything about that!” He responded, and I promptly forgot what he said. 

The time before 11am and visiting hours begins is BUSY for the patients! Next came my surgeon’s senior resident, and his interns. Shortly thereafter came another nurse who cut off my bandage with scissors. Ahhhhh, the relief, my head no long weighed a tonne!

Then came yet another neurosurgeon, with another medical looking person in tow. He removed the two tubes from my head. There was quite a lot of tube hidden in my head, and while it didn’t hurt when he pulled them out, it felt gross to feel it moving under my scalp! He had to really yank to get them out. Ewww. Then he proceeded to stitch up the remaining holes… no local anesthetic, just the needle and thread. I laughed and used the F word (not the food one for Gordon Ramsay fans) intermittently until he was done.

At some point someone brought breakfast, and someone else came by cleaning the floor… he tested my reactions by nearly pushing my table into my face with his mop. He got the evil eye from me, thats all I can say. 

Next came a social worker, then two physiotherapists. They wanted to get me out of bed. So, maneuvering with all my tubes I managed to stand up. Much to the physios chagrin however, a nurse arrived with a wheel chair to take me for a CT scan. Phew, I got to sit down again and was whisked away downstairs. Uuuuugh, but how is it possible to get motion sickness from a wheel chair?! Anesthetic and steroids thats how. That nurse got strict instructions from me to slow down, especially when cornering! 

Once back in neuro ICU, a nurse came by and announced I was moving to the ward. All the IVs were removed bar the one in my hand (plugged and left for emergencies), including the horse needle in my neck, and was wheeled off to the neuro and trauma ward. No monitoring machines anymore, I was all on my own less than 24 hours after surgery.

The physiotherapist found me again and I had to go for a walk down the hall and up some stairs. I felt thoroughly gross afterwards and didn’t eat for the rest of the day. Then I felt icky from not eating, then from having to get out of bed… the viscious circle continued. I think I lost 5lbs in those few days.

All this before 11am!

The next day my surgeons came by and announced they wanted to send me home. Yes, one day after surgery. I was still feeling like crap from the anesthetic so managed to get myself one more night in hospital. Never thought I would be asking for that!

Overall my stay in hospital was as good as it could have been, considering I had a craniotomy. Every single person I came into contact with at St. Michael’s Hospital was polite and friendly, and the whole place was so efficient.

For those of you who have a date with the surgeon like I did, I really didn’t feel anywhere near as bad as I expected afterwards. It was terrifying beforehand, and it wasn’t fun afterwards, but it really wasn’t that bad at all! Recovery on the other hand requires much time, patience, and a level of self awareness that allows you to recognise (and work on) the subtle differences your brain presents you with on a day to day basis.

Hospital: Part 1

March 8, 2009

My memory of being in hospital is clouded by the drugs they were pumping into me. The memory fades even more as time progresses so I decided it is time to get it down.

I woke up that morning to find it had snowed all night, sparking the discussion “drive or TTC”. Bundled up against the elements, my husband, Dad, and I ended up walking down the sidewalk, single file towards the TTC station. The mood was heavy, and while standing on the train I could see the worry on their faces. 

I scanned the people around me, what were they doing that day? What were their hopes and fears, what challenges would they face? I felt isolated and different, while these people were eating lunch, I would be wheeled into an operating room for a craniotomy to have a meningioma removed.

St. Michaels ran like a well oiled machine. Within 5 minutes of arriving I had an ID bracelet on and was in a hospital gown. A nurse called Judy started an IV. She told me that they like to get my neurosurgeon’s patients admitted and on an IV as soon as possible, as he likes things to be done, and likes them to be done on time. Another nurse came in and took blood, and not long after an orderly came by and wheeled me downstairs for a CT scan.

As quickly as the orderly arrived to take me for my CT, they left. I lay on a bed in the corridor, my husband and Dad hanging around with me. Patients, technicians, and doctors came in and out of the CT rooms, but no-one came to get me. Eventually Dr. Muller emerged from the stairwell, exclaiming “There you are!” No one had brought the patient to him, so he came to find the patient himself. Apparently I didn’t need another CT, in fact he had just been studying my CT from December in preparation for surgery, and that was all he needed. 

The neurosurgeon wheeled me with enrourage in tow, up to the 9th floor and the final waiting area before you get wheeled into the operating room. When was the last time you ate or drank anything? Are you allergic to anything? Have you or anyone in your family had problems with anaesthesia? Do you have any loose teeth? The neurosurgeon, the neurosurgeon’s senior resident, the nurse, another nurse, the anaesthetist, and yet another anaesthetist all asked me the same questions. Very thorough! 

Not long after the nurse arrived to wheel me into the operating room. It was hard to say goodbye to my family, and I suddenly realised how frightened I was without them around me. Big double doors opened, and the bed glided through into a long, wide corridor. On the right were windows, it was still snowing and gloomy outside. On the left was one operating room after another. Some doors were open, some were closed, but all were quiet and were full of people shuffling around. Next thing I knew I was being wheeled into one. 

The first thing I saw was a shelving unit full of metal contraptions, and I am pretty sure my blood pressure went through the roof at that point! There must have been 8 people or more in there, quietly moving around readying things. Machines were everywhere, as were IVs, and trays of vials. Once on the operating table, my arms were pulled out into a cross position and placed on their own supports. A nurse on one side, an anaesthetist on the other, IVs were going in on both sides. They were calm and so incredibly kind, I was terrified and was pretty much bawling my eyes out. That is until they gave me a sedative and I immediately stopped and became Miss Chatterbox. I think thats when they knocked me out…

Update, 3 weeks post-op

February 18, 2009

So it is now 3 weeks to the day since my surgery. I still have no follow-up with my neurosurgeon. I called his office yesterday and they still haven’t scheduled it! It really is so everyday to them. You just have to trust their experience and that they cast you out into the world when you are ready for it. Luckily my GP has said I can go see him whenever I need to, no appointment necessary. Even more lucky is that I haven’t had to take him up on his offer.

I have seen my naturopath however, he seemed shocked with how I looked and questioned if I had actually had the surgery haha. I am now taking Vitamin C, D, B, Zinc (for taste), and Probiotics (to reduce chance of infection). No Omega 3 (major brain food) yet as it acts a blood thinner. I also have the homeopathic remedy Belladonna to take in situations when the the hypervigilance gets bad.