I recently found an old notebook that Sam and I used to write notes to each other when we were dating. There were notes that he wrote to me straight after the stroke, and one that I wrote about two weeks after the stroke when my handwriting was appalling and barely legible. I decided to go back to some of my old journal entries from around the time of Cushing’s and the stroke and post them here. The story already on this blog was written after it had happened, so the tone is a bit different to what I’d written as it happened.
14th October, 2008
Today was made of all kinds of awesome.
+ I delivered 24 hours worth of urine. Actually, that’s probably not awesome, but it’s not bad. It’s another step of all the tests I have to do this week to find out what’s wrong with me, and I will find out what’s wrong with me and hopefully how to fix it this Friday. The doctors are fairly sure they know what’s wrong, but need vials and vials of blood and a giant bottle of pee to confirm. Delightful.
17th October, 2008
Today could have been a good day or a bad day. I’ve decided that it will be a good day!
So, I found out today that I have Cushing’s Disease. Which is the bit that could have made today bad, but it’s not really. Well, I’m not thrilled that I have Cushing’s, but it’s been suspected for a couple of weeks, and it’s good to know for sure, because it explains a lot of things that’s been happening to my body over the past few months. And now that we know, we can get started on locating the source and getting treatment. Which involves fun things like getting pumped of steroids and having MRI scans and probably having neurosurgery, if the tumour is actually in the pituitary gland (and it’s about a 90% chance that it is). (Cushing’s is where your hormone-producing glands are screwed up and producing too much cortisol. I think.)
But now I know why dieting and exercising is failing and I’m putting on weight rather than losing weight, and it’s not because I’m a lazy, unmotivated, undisciplined giant tub of lard like I’ve been telling myself for the past few months. I have an excuse! So I will continue exercising and eating healthily but also not completely cut out dessert or feel massive amounts of guilt when I do eat something bad.
24th October 2008
I love hospital food. I love how there’s so much variety on that tray, and the surprise and anticipation of lifting the lid and seeing what’s underneath, and I love how it’s something to look forward to because all you’re doing is sitting on a bed and not doing anything. And the food itself isn’t *that* bad. Some of it was actually tasty!
Also, on a kind of related note, I’m a medical freak. Enough of a freak to be shown off to other specialists and an entire team of haemothingys and be discussed with with some really old professor-type endocrinologist, who agreed that I’m a freak. Example: cortisol levels from a 24 hour urine test for a normal adult should be about 10-100mg. For people with Cushing’s, it’s about 800mg. The highest my endocrinologist has seen was about 1500mg. And mine were 4200mg.
It seems fairly certain that I’ll be getting neurosurgery done at some point in the near future (I’ll most likely find out next week), which will involve another hospital stay, which will be awesome because yay, more hospital food! I should bring a camera, for food porn.
27th October, 2008
MRI scan today. Let’s hope they find a massive, obvious tumour!
27th October, 2008 (later)
This morning, I had an MRI scan, which wasn’t actually as bad as everyone was telling me. Probably because I was expecting to be stuck in some metal cage, and it was actually white and plastic. Although after 40 minutes in that thing, I was starting to feel like throwing up would be a wonderful feeling.
It was then off to the hospital to get some blood tests done. The referral I had had a lot of stuff written on it, but I didn’t realise until I got to pathology that I would need 16 vials of blood. Well, I lie. It was only 15. But there were 16 vials used, because they weren’t all full of blood. The reason for that is because my veins are tiny and deep and incredibly hard to get blood out of, and they also used needles that were big and made my veins keep collapsing. And when they collapse, blood stops coming out. I ended up being jabbed four times for blood today. There was also an injection of contrast for the MRI, so that’s a total of five jabs and a whole slew of new bruises on my arms (one of the effects of Cushing’s is easy bruising, hooray!).
And then it was to the doctor! Where he looked at the scans from the MRI, and is fairly certain that I have a tumour in the pituitary, which is awesome and what we wanted to happen. He’s waiting for the official report from the radiologist, which he should get tomorrow morning, and then we’ll see where to go from there. I have to have another test, a sinus sampling test (I think? Or something like that) where they apparently stick a needle in my groin. Oh god more needles. He also described the surgery procedure, and telling me what might happen if things go wrong. If they don’t remove enough of the tumour, then I’ll have to have surgery again. If they remove too much, then there could be problems with fertility, and probably other problems too, but the only one I remember him saying is the fertility one. So, let’s hope the surgeon’s good and only removes what he or she has to.
He also told me about a patient he had who decided to not have surgery or medication. She was my age when she was diagnosed, and now she’s in her 30s but looks like she’s in her 50s, and has had a stroke and a bunch of other medical problems, and probably only has another five or ten years left. So I guess those websites that say Cushing’s can be fatal weren’t that off the mark.
1st November, 2008
I’m in the middle of sorting out my fucked up body. I went to have a bone density scan yesterday, and saw my doctor again briefly. He got the official radiologist report back and it confirmed what he thought: I have a 6mm by 8mm tumour on the right side of the pituitary, and it will be getting removed probably in early December. Assuming that’s the tumour that’s the trouble-maker, that is–I have a sinus sampling test in a couple of weeks to make sure that’s the tumour they want to remove, which I’m not looking forward to at all. Apparently they stick needles in my groin and they’re taking blood every few minutes. So much blood, in fact, that they need three doctors there to make sure the labelling of the blood doesn’t get messed up.
I’m not liking this Cushing’s thing much. This is everything that has happened to my body because of the stupid tumour and stupidly high levels of cortisol: easy bruising (my arms are covered in massive purple bruises from getting blood taken from six different places); bright pink stretch marks on my boobs, hips/waist and legs; weird vein patterns on my legs that make them look like a roadmap; weight gain around the middle of my body (w00t, beer gut); muscle loss in my arms and legs; inability to get a good night’s sleep (I can’t seem to sleep past 6:30am these days, it sucks); acne (just like high school all over again…); rounder face, and as a result of that, my glasses are pressing more deeply into my face and leaving an indent; shaky hands; low bone density (I have pre-osteoperosis! Despite eating shitloads of calcium, god damn); and bruises/spots whenever I do anything vigorous, like walking slightly faster than 4km/hour.
And then I feel crap complaining about this, because it’s not that big a deal. It’s curable. I’m not going to be like this forever, fingers crossed. They’ll put a hole in my head, get rid of the tumour, and hopefully Cushing’s will be gone. Other people have far worse problems than me, so I feel guilty for feeling bad. And I don’t actually feel that bad about it, most of the time. I’m glad that it’s getting sorted, and so grateful to my doctor for hurrying everything along so it does get fixed as soon as possible. Most people tend to have more shocked reactions than me when I tell them I have a tumour in my head. But there are times when I do get frustrated, like last night, when all I wanted to do was to be in a frame of mind to celebrate the finishing of Honours but instead, I was thinking about brain surgery.
11th November, 2008
I had the consultation with the neurosurgeon today, and that was a cheery visit.
The first thing we went through were the three ways of treating Cushings: medical, radiotherapy or surgery. They aren’t really options, though, because quite frankly, the first two options suck.
With the medical one, it’s just drugs for life. They’ll give you drugs to suppress the symptoms, and somehow control the tumour, but it doesn’t get rid of the disease, and the symptoms don’t go away completely. AND YOU’RE ON DRUGS FOR LIFE! Why would anyone choose that?
Radiotherapy sounded really bad, too. It might get rid of the tumour, but it would take two to three years, it will destroy the pituitary gland and therefore you’ll be infertile and on hormone replacement therapy for life, and it can cause a whole host of other problems, like maybe tumours elsewhere.
And so, surgery. It has a whopping 75% success rate, I’m told. That’s good, right? It’ll get you a Distinction at the undergrad level, but it won’t get you First Class Honours. So he went through everything that could go wrong with surgery, and I’m feeling slightly alarmed. I know that he has to tell me everything that can go wrong and all the risks, but I kind of wish that I didn’t have to know.
Things that can go wrong with surgery
1. I die. Because there’s always a chance that that will happen with brain surgery! But the chances are really low, and he hasn’t had a patient die on him yet.
2. The tumour is located really close to a blood vessel, so if they break it, then I could have a stroke or have lots and lots of bleeding and may need a blood transfusion.
3. The area they’re operating in is really close to the optic nerve, so if they bugger something up, I could go blind. But he also said that he hasn’t done that to any of his patients yet.
4. They might not remove all of the tumour, and I might still have Cushings after. They’ll be doing lots of tests after the surgery to check my hormone levels, and if it looks like they aren’t normal, the options are to go in straightaway and remove the entire pituitary gland, which I don’t want, because that will have the same net result as radiotherapy – infertility and hormone replacement therapy for life. Or the other option was just to wait awhile and then decide if I want to remove the gland.
5. The area where the surgery is done is also close to some other membrane thing. And I don’t remember the details of this point, but there was stuff about spinal fluids, and if there’s a tear in that membrane, then it could leak, and leakages there could lead to bacteria getting into the brain and cause meningitis. So if they see a tear and a leak in surgery, they’ll just cut some muscle and fat from my thigh and plug it up, and put a drain at the bottom of my spine to drain out the fluid. And the drain will stay there for two or three days? I think. This apparently occurs about 20% of the time, so it’s fairly common, but all the stuff about cutting flesh from my thigh and plugging me up happens when I’m knocked out, so it’s all good!
Even though this all sounds rather shit, it’s not all bad. My tumour is obvious on the scan, and localised I think was the term that he used–it seems to be a fairly large, obvious, straightforward tumour to be removed. And all the things that I listed above about what could go wrong are just things that could go wrong. Things could also go right, and I could be one of the 75% of cases where it goes smoothly, Cushings goes away, and I’ll still be able to have kids and not be on drugs forever.
Actually, there’ll be drugs for the next year, at least, I think. My current levels of cortisol are stupidly high, and my body has become used to that, so when the tumour gets removed and my cortisol levels drops to nothing (comparatively – because really, 10mg is nothing compared to 4200mg), then the body will go “Wtf? Need cortisol! Collapse”. So I’ll be on some cortisol drug, to wean my body off it.
And speaking of time frames, the surgery should happen before Christmas. It might be in the next couple of weeks, or it might be longer, depending on a few things like my private health fund and waiting lists. I’ll be in hospital for six days, and off work for three to four weeks after that. I just e-mailed my new work, and they said that working from home is definitely an option, and I can do web-based research and reading if the doctors permit it. Which they should, because it’s not like reading and writing is that strenuous… My brain will still work, right? But yay, I love that my new work is awesome and flexible and actually able to let me do this. And not say, “What? You’ve started for a week and now you want to take a month off? Piss off”. Although I did tell them about Cushings and surgery at the interview, so they knew what they were getting into when they hired me.
So there are good things out of this! My tumour is cool, and my work is cool. I’m just going to adopt the Chudley Cannons motto for everything else: “Let’s all just keep our fingers crossed and hope for the best”. Things will be okay. And if they aren’t, then… There are still people far worse off than me. I’ve really got nothing to complain about.
(Actually, I do have one disappointment – I don’t get to keep the tumour. Alas!)
14th November, 2008
I feel a bit like a human voodoo doll. Or pincushion. Eight needles and a night in hospital later, the inferior petrosal sinus sampling test is done, and I’m slightly impressed by my ability to remember medical terms *like* inferior petrosal sinus sampling. But ow, my arms, hands and groin still hurt. I was left with two arms full of bruises after my last lot of major blood tests, and they had finally faded completely a few days ago, and now they’re covered in bruises again. I swear, it’s not Sam beating me up! It’s the blood!
I have a CT scan in about an hour, and they’ll probably want to stick more things in me. I think I still have an untouched vein left in my right arm. Which is untouched for a reason – it’s shit. But they’re only scanning my head and bones today, so maybe they won’t need to inject me with contrast…
Not really liking this Cushing’s thing.
21st November, 2008
I saw my doctor today to get the results of the sinus sampling test. The tumour is on the right side of the pituitary gland, and so all the excess hormones should be coming from that side. The test showed that it was coming from the left. Wtf body, stop being difficult. If it’s not *that* massive tumour that’s the problem, then what is?! My doctor did tell me later, though, that the test doesn’t localise the source *that* well, with only about 70% accuracy, and because the gland is so tiny and the tumour is a bit big, it could have just spilled over and shown everything coming from the left, and it still actually is that tumour that’s the problem.
There are two outcomes at the moment. One, the surgeon decides to remove just the tumour, and hope that fixes everything. Or two, he removes tissue from the left side of the pituitary, which is where the problem apparently is. The second option is pretty much removal of the pituitary gland, and will mean hormone replace therapy for life (yay, drugs!) and fertility problems.
But the good news is that the source is definitely the pituitary! And not some weird growth on my lung or something. Which is what the sinus sampling confirmed, and was the reason for doing that test in the first place.
And the other good news is that I have a confirmed surgery date, which is next Thursday. There are still dramas with my health fund at the moment, but I’m pretty much resigned to the fact that I will be paying a shitload of money because I’m paying for a private hospital and my health fund won’t cover a lot of it. The reason I’m going private isn’t because I want a nicer bed, it’s because I want to get it done next Thursday, and not have to wait until next year which is probably what would have happened if I went public. But I really don’t want to drag this out any longer, because Cushing’s sucks. I want everything that’s wrong with my body (and believe me, there’s a lot) to be fixed, sooner rather than later.
Things could be worse! Yay, hospital food!
25th November, 2008
I’m going to hospital tomorrow for adventures! Hospital tomorrow, surgery on Thursday, three nights in intensive care and four nights in an unintensive room, and then back to my parents’ for a week or so. I love that I can use neurosurgery as an excuse to lie around and do nothing except for read trashy novels.