An adventure in Cushing's and stroke

(This final version written 24th May, 2009.)

Just an ordinary gym session

On my most recent visit to the gym, my personal trainer showed me a few exercises. He told me to watch him, because those were the things he wanted me to do when I wasn’t in a session with him. He was using the weights machines with only his left arm.

The reason for that was because I had asked him what to do to strengthen my left side, since it was considerably weaker than my right. The reason for *that* is a story with a few different starting points, but I’ll begin with when I first met Jimmy, because I’m a big fan of dramatic irony.

Dramatic Irony

It was a mild spring evening in September 2008 when we first met Jimmy. Sam, my boyfriend at the time, and I were planning on moving in together, and we had two other people who would move in with us. One dropped out at the last minute, so we needed a replacement. Jimmy was a friend of someone Sam vaguely knew, who needed a place to live. So Sam and I met Jimmy for coffee one evening to see whether he was a crazy murderer who would kill us in our sleep, or a lazy, filthy slob who would be terrible to live with, or for some other reason, impossible to live with. We had a lovely chat about things like cleaning habits, eating habits, working arrangements… The usual things you would like to know about a potential housemate. At one point during the conversation, Jimmy asked if anyone in the house had any sort of horrible, life-threatening illness. He said he would hate to move in and then have it sprung on him that one of us is actually on our deathbed. We assured him that we were all fine.

A learning experience

Actually, this whole story was a learning experience, but the two months after Jimmy moved in were the start of it all.

In August 2008, I noticed some weird spots on my arms that looked like a weird rash, but I had no idea what caused it. My GP also didn’t know, and sent me to a dermatologist. In the two months leading up to my appointment with the dermatologist, I’d also noticed that I had gained weight (despite exercising and eating really healthily), especially around my tummy, and really bright stretch marks. My GP said the stretch marks were just from the weight gain, and all I had to do to lose weight was to cut out junk.

When the dermatologist saw me in September, he pretty much said straight away that he didn’t think I had a skin problem, and he suspected Cushing’s Disease. He referred me to an endocrinologist.

I saw the endocrinologist in October, and it turned out the dermatologist was spot on with his diagnosis. The rest of October and November were spent undergoing tests. Lots and lots of tests and scans, including two overnight hospital stays. There was a two night stay at Nepean Hospital, where I was pumped full of drugs and had blood taken every fifteen minutes.

The second overnight stay was at Westmead Hospital where I had the inferior petrosal sinus sampling test. Needles were stuck in my groin, and again, I was pumped with drugs and had lots of blood taken.

At the time, the hospital stays were a big deal, but now I wonder what on earth I was complaining about. Two nights is nothing. Anyway, I digress.

The tests were to confirm that I had Cushing’s and what was causing it. And then, we knew. There was an active 6mm by 8mm tumour on my pituitary gland producing a lot of ACTH, which told my adrenal glands to produce a lot of cortisol. And they were happy to oblige. At one point, my 24 hour urinary cortisol levels were at 4200nmol/L, and normal is about 300. I had every symptom of Cushing’s in the textbook. There were a couple of options for treating Cushing’s, such as medication or radiotherapy, but my endo was quite blunt with me: “You need surgery, and you need to get the tumour removed, or you will eventually die”.

So, surgery it was.

Getting rid of the “Ugly Disease”

I had the surgery and everything seemed to go well. When they did blood tests after the surgery to check my cortisol levels, they were zero. The tumour was removed successfully, and I no longer had a tumour producing ridiculous amounts of ACTH (the hormone telling the adrenal glands to produce cortisol). Everyone was happy. Two days after I spoke to the hospital’s endocrinologist, my neurosurgeon came to check up on me. Cricket was on TV, and we had a chat about the surgery, the cricket, and I mentioned that I still had watery stuff coming out of my nose. And that is when he said, “Oh, damn.” I had developed a CSF leak, which from my very basic understanding, means that there was some fluid from around the brain coming out that wasn’t meant to. My neurosurgeon put in a lumbar drain to drain the fluid. This involved a needle at the base of my spine, and then a thing with a tap that I never saw clearly because it was near the bottom of my back and I couldn’t move much once it was in. Having it put in was incredibly painful, but there was more to come.

On a scale of one to ten

I really like how pain is measured. A few days after the lumbar puncture was put in, I developed a very bad headache. It was the worst headache I had ever had, and there was nothing more in the world I wanted than for the pain to stop. I don’t normally get headaches, so I thought this was what normal headaches, or maybe even migraines felt like. The nurses would ask me, “On a scale of one to ten, how bad is it?” I remember thinking, “I don’t bloody know, pain is subjective! Maybe my five is somebody else’s two!” I said it was an eight, because it was really painful, but I wasn’t dead yet, and I figured that a ten would probably kill someone—isn’t that how those types of scales work?

I found out a few weeks later that that really bad headache actually did almost kill me. That headache was a “right occipital haematoma and associated subarachnoid bleed, left tempero-occipital venous infarct with haemorrhagic transformation, superior sagittal sinus thrombosis”. In non-medical terms, it was a stroke. It was a bleed on the right side of the brain and a clot in the back. I was blind for about a day and a half, and completely paralysed on my left side for a week and a half.

Learning to walk

The recovery was awesome. I’d never been good at anything before, but apparently I’m good at recovering from a stroke (not really something I want to try again, however).

2nd December, 2008:

The stroke. I was rushed to the imaging place, and had an CT scan of my brain without contrast at 6:00pm. I also threw up in the machine. I was moved to intensive care, and the doctors said I could be in hospital for months. There was a possibility that I may have to be operated on again if the clot got bigger, but if they had to operate, there was a high chance I would be blind. For awhile there, it seemed that the two options were blindness or death.

3rd December, 2008:

I’m told that I was talking a bit, sleeping a lot, and asking for Sam.

This was also the day everyone thought I couldn’t see. Then I asked Sam for my iPod, and he handed it to me and said, “Here, you know what to press”. I remember feeling annoyed at that, and thinking, “I just had surgery, you should be nice to me!” (I didn’t realise at the time that I’d had a stroke) and then picked it up and looked at it.

4th December, 2008:

Maybe I got over Sam, because on the notes for this day, it says that I was asking about cupcakes. I was on nil by mouth, and really, really wanted Jaffa ice cream. For some reason, I thought the hospital was just across the road from Broadway shops, where there is Jaffa ice cream, instead of being 40 kilometres away. I also remember saying to my surgeon that the reason I wasn’t allowed to eat was because he didn’t want me to throw up on his shoes, and he said that they were nice shoes.

5th December, 2008:

I was moved to the high dependency unit at the public hospital.

I don’t actually remember the first few days at the high dependency unit. I was there for about two weeks, and had some of my worst days there. There are two moments that particularly stand out. There was one morning where I spent a lot of the morning crying to Sam’s mum. The day before, Sam had visited and brought his laptop and the internet. I had tried to log into internet banking but couldn’t remember my login details. The morning after that, it hit me how much of my real life I had missed, and I was scared that I wouldn’t be able to catch up, or that going back to real life would be something that I couldn’t do.

The other moment of emotional breakdown was the day that I sat up for four minutes. I cried to Sam when I looked at the date that was above the door. It was halfway through December, and I was sad and frustrated because six months ago, in June my goal was to be able to run 5 kilometres by September, and it had changed to just wanting to sit up by myself.

6th December, 2008:

I had some feeling in my left arm.

7th December, 2008:

I was taken off being nil by mouth, and the first thing I did was call Sam’s mum and ask her to bring me ice cream.

8th December, 2008:

I had the first physio assessment, with the sexy physio who looked like Harry Potter, and I don’t actually remember much of this apart from the fact that the first thing I said to him was, “You look like Harry Potter!”

9th December, 2008:

I could sit with two people helping.

10th December, 2008:

I could move my fingers independently, and there was a twitch in my leg, but the jury’s still out as to whether that was real movement or not. I practising sitting with one person helping.

13th December, 2008:

I was upright for the first time since the stroke. The physios strapped me to a tilt board, which is exactly what it sounds like – I was strapped to a board and then tilted upright.

14th December, 2008:

I could move my arm, and push my leg down the bed, but not pull it back up. It was also this day that I decided I did not want to be in hospital for Christmas. I wanted to spend Christmas with Sam and his family, eating roast kangaroo and listening to Elvis, and screw you, stroke, you’re not going to stop me from having that.

15th December, 2008:

I stood up without the board – just with a pelican belt and two physios. One of the physios was a small Indian girl, and I was afraid I’d crush her. I remember the physio coming in at the start of the session and telling me that we were going to try standing, and my first thought was, “How on earth am I going to do this?”

16th December, 2008:

I took my first steps, with the pelican belt and two physios.

My name was also put on the waiting list for a rehab hospital.

19th December, 2008:

Another step further in the escape plan – I was moved from the high dependency unit to the general ward, where I get roommates. I had my first shower on the commode chair, and said goodbye to my giant room, a bed that can be adjusted with the press of a button, and being hooked up to machines all the time.

This was a day with the most walking I’d done in awhile. I was taken down to the physio gym and walked for ten minutes on the Lite Gait, which is a treadmill with a harness. So by walk, I mean I was in the harness, and the physio was helping move my left leg the way it was supposed to.

20th December, 2008:

This is the day of the great grandma deception. My grandmother visited, but no one told her what happened, because they didn’t want to worry her. My parents told me the day before that she would be visiting, and she didn’t know, so I had to sit very still and look normal. She didn’t find out the truth until the middle of May, 2009.

After the visit, I went on a lunch date with Sam and his parents to the hospital cafeteria, and typed for the first time. My progress that day was marked by successfully eating a grape – picking it up and moving it from the table to my mouth with my left hand.

21st December, 2008:

Sam and I had a dinner date, just outside the main entrance of the hospital. We had Subway, and when he left me in my wheelchair at the entrance while he went to get dinner, he said to me that he was worried someone would steal me. No one did.

22nd December, 2008

I practised more transfers, going from chair to bed.

23rd December, 2008

This was the first day I walked without some a structure to hold onto, and two physios helped. I was in the physio gym, and walked with parallel bars, but then did some laps without holding onto the bars.

24th December, 2008:

I had day release for good behaviour for Christmas, so on Christmas Eve, I was taught how to get in and out of cars and the wheelchair. The lesson was watched/taught by two physios and two OTs.

On that day, I also did two big laps of the ward with just a pelican belt and my physio.

25th December, 2008:

One of the best days of the year. I woke up at 7am to see Sam and his mum at the end of my bed, wearing Santa hats, and ready to take me out of the hospital. I saw the real world for the first time in almost a month. I saw roads, and traffic lights, and Sydney. And oh God I’d missed it. Real world has an amazing smell, texture and liveliness that hospitals lack.

The day was spent at Sam’s parents’ house, and it was how I had imagined it eleven days previously. After Christmas lunch, Sam and I went back to his old bedroom (now converted into a sun room/guest room), looked at a giant Lonely Planet coffee table travel book, talked about the future, and had sex.

26th December, 2008:

Another day release, another day at Sam’s parents’. My parents, my friends and his friends were there, as well as the same people at Christmas. I saw people that I hadn’t seen in awhile, and for a day, it was almost like things were back to normal. I was still in a wheelchair, and needed help to go to the toilet, but at least I was out of hospital.

28th December, 2008:

Sam’s and my one year anniversary, so I had another day release. We went to our favourite cafe, watched Love Actually, and lazed about outside of hospital. At this stage, I could walk a few steps, but I was still primarily using a wheelchair to get around.

29th December, 2008:

I rode for 20 minutes on the exercise bike, and conspired with my physio and OT to create an escape plan so I wouldn’t need to go to rehab hospital as an in-patient. I walked 10 metres in 21 seconds.

30th December, 2008:

I took my first running steps, first skipping steps, and first jumps. I was also walking longer distances, such as from my bed to the physio gym, which involved about 150 metres of walking.

31st December, 2008:

I walked one kilometre on the treadmill, walked up and down a set of four steps 50 times without using the handrails, walked to the toilet unassisted, and the 10 metre walk test took 7 seconds. For the first time since before the surgery, wore a bra and undies.

During the physio session, and the ones in the few days before and after this day my motivation was to go home. The first ten times up and down those steps were incredibly hard. Ed, the physio, gave me a break after every ten or so. He knew how much I wanted to go home, so he would push me at every session. I remember at this particular session, my motto was, “no rehab hospital!” I got to having done 40 sets, absolutely knackered, and when Ed asked if I was ready, I looked at the steps and said, “All right, ten more. Let’s do this.”

This day was also New Year’s Eve, and I saw in 2009 with Sam and one of my roommates, watching the fireworks on TV, eating Toobs, and talking about how we could spend the next New Year’s Eve.

1st January, 2009:

Another day release. I went back to the house that I lived in with Sam, used my computer, and watched Black Books. I was no longer using the wheelchair, just an arm for occasional support.

2nd January, 2009:

And yet another day release. Sam and I went to Newtown to buy a camera bag and have lunch. I did a fair bit of walking, and went to one of the bookshops I interviewed the year before for my Honours thesis, and had a chat to the owner.

The real world is an exciting and amazing place.

3rd January, 2009:

A day release not spent with Sam. I go back with my parents, go to the local shops for the first time in months, and get two books. I could walk up and down stairs using the railing.

4th January, 2009:

Another day release, another day of progress. I visited Sam’s brother, and walked up and down stairs by myself. That night, I ventured into the kitchen for the first time, and helped Sam’s mum cook dinner. I chopped an onion, some celery and some capsicum.

5th January, 2009:

I finally got the all clear from the doctors, physio and OT, and told that I could go home. Holy shit YES!

6th January, 2009:

I was discharged, and went home with exercises from both my awesome physio and awesome OT, and a great cocktail of drugs. I went back to Sam’s parents’, and stayed with them for about two weeks, because their house was more disabled-friendly than the house I lived in with Sam, and my parents’ house.

7th January, 2009:

Showered on my own for the first time, standing up.

9th January, 2009:

I had my first physio session as an outpatient at a different hospital, and the physio said I would probably need to see her until May or June, depending on how I go.

16th January, 2009:

I had my first OT session as an outpatient, but I can’t say that it was very useful.

6th February, 2009:

I had my last physio and OT sessions. So, stroke over! (Much earlier than expected, too).

“Let’s go and annoy the nurses”

Hospitals are not fun places to be. They have no fresh air, there isn’t a lot to do, and you can’t leave. I have some memories that I now look back on with fondness, though at the time I just hated every moment of the experience. I remember when I was in the high dependency unit, one of my nurses was a student nurse named Darren, and he would always ask me what I was watching on TV, and more often than not, it was kids’ cartoons. I wasn’t really paying attention to them, but I needed something that was not-hospital in that room. My favourite nurses were the ones who wore perfume, because their smell was a novelty. It was not sterile, not hospital, and it was nice.

When I was moved to the general ward, I got roommates, and things became a little more interesting. One of my roommates was a girl named Karina, who was a couple of years younger than me. When we were both able to walk without someone else, we would make little excursions to the nurses’ station and ask questions and talk to the nurses, and revel in the freedom we had in those fifty metres.

We didn’t intentionally try to be nuisances, but you have to admit, hospitals are very boring places. In hospital, almost everything became a highlight, or something to look forward to – breakfast, lunch, dinner, 12 o’clock meds, 4 o’clock meds…

One of the highlights was playing the obs game. When the nurses took my temperature, heart rate, blood pressure and pupil dilation, I would guess the numbers. I got quite good at the game, and on occasion, the nurse would play along.

Something else I did to relieve boredom was steal other patients’ visitors. I talked to *everyone* who came into the room – my visitors, other people’s visitors, nurses, wardsmen, the pharmacist (even when she wasn’t there to see me), and of course, the other patients.

The worst part of the day was filling in the menu, because I would be reminded that I was in hospital for yet another day. Also, the food was bad. It was even worse on weekends, because I knew that when everyone else was enjoying their weekend, it was just like any other day for me, and it was even worse because weekends didn’t have physio or OT to look forward to. It was just wake up, be in hospital, in that room, and then go to sleep.

The best part of the day was when Sam visited. Mainly because I loved him, and he was the one person I wanted to see more than anyone else, but also because he would take me on adventures. In ICU, I would go in a big reclining chair that also had wheels, and in the general ward, I moved up to using a wheelchair. So for a little time each day, I would leave my room, and see other parts of the hospital, and even venture outside. I vowed that I would never take fresh air for granted again.

I lost all modesty in hospital. When you’re dependent on other people for pretty much everything, you very quickly learn to not care. Complete strangers gave me sponge baths, gave me and took away bedpans, showered me, took me to the toilet, and knew a lot of details about my medical history. There comes a point where you don’t care who knows what and who sees what, and you wonder why patients wear clothes at all.

To infinity and beyond!

I have learnt a lot from this entire experience. I have learnt about the endocrine system, Cushing’s Disease, how the brain works, and strokes. I have learnt how hospitals work, the amount of work nurses and doctors do, and how many people it takes to keep hospitals running. I have learnt to love my body, and to love life for everything that it is: some shit, some fantastic, and mostly evening out to be pretty damn good.

I have some new plans now. The National Stroke Foundation has a fundraising event where you raise money by finding sponsors for a week-long cycle through either India or Vietnam. I will need to relearn how to ride a bike, but since I relearnt a lot of other things, I will hopefully be able to manage this.

I am not defined by Cushing’s, and I am not defined by the stroke. They were just a couple of things that happened to me, like a lot of other experiences such as wisdom teeth extraction and getting a haircut. They are just things that happen, and life is made up of things that happen.

It’s pretty cool like that.