Fourth time lucky?

Hey all! So it's been a while since I posted (seems like I've been saying that pretty much every post!) but I've been pretty damn busy. Been working hard at uni and freelancing for my charity. Plus, I've actually been having something which resembles A LIFE!!! Now don't get too excited there folks, it's nothing to write home about (though I guess I found it worthy enough for blog writing) but it's a hell of a lot better than what I had before.
Basically in the last few months I've been really feeling better energy wise. The fact that I've lost over 20kgs might have something to do with it but I also think it's thanks to the correct medication dosage I'm now on. If you remember the doc started me on cortisol lowering meds and after surgeries 2 and 3 messed up my pituitary I've also been replacing a whole host of other hormones. Although it's a pain having to take so many pills, it's totally worth it. I'm able to walk an average of one hour every day, I'm not sweating as much and my mood has been pretty stable. All in all, I've been feeling pretty awesome.

Groundhog day

Monday last week, the 8th of April was Cushing's awareness day. Unfortunately because I was traveling from London to Hong Kong I was unable to write a special post or even put anything on Facebook. By the time I landed in Hong Kong it was late at night and I was so exhausted that I just couldn't bring myself to write anything. But as one of my fellow cushies pointed out, EVER DAY is Cushing's awareness day for us!! Because we suffer from this terrible disease every single day. In the last 10 or so years I've been suffering from symptoms, not a single day has gone by when I have felt "normal".

Still here!

Hey everyone! Quick post to let you know I'm still here, still around fighting the good fight. I haven't posted in a while as I've been pretty down and to be completely honest a bit depressed after this whole ordeal, but I'm starting to see the light at the end of the tunnel again and am slowly regaining some enthusiasm and positivity. That's not to say I've completely recovered all the energy I had pre-surgery, especially since I'm having extreme nausea and fatigue in the mornings. But I'm getting used to life with shit loads of medication to take morning and night, and I realise my life could be worse. At least I'm still here in one piece!

At the moment I take about 12 pills a day which address my blood pressure, stomach acidity, bone density,  thyroid and cortisol. I will soon have to add a few more as my periods haven't returned and my sex hormones are pretty much down the toilet. Luckily the growth hormone readings aren't too bad so that's just being monitored.

The meds I take to control my cortisol seem to be working fairly well so I've decided to stay on them for a few months so my body can have a rest. Once I feel things have stabilised and I've lost a few kilos, I'll have to think about having the BLA (removing my adrenal glands). But I'm in no rush as it will mean having to take another couple of months out of my studies. For now I'm just going to try and enjoy some "normal" time, starting with spending 10 days in Hong Kong in April with my parents. Hopefully I'll be able to relax and spend some quality time with family and friends when I'm there. When I return, it's a busy term at school for me, doing 3 modules to try and catch up on time lost.

There was some good news for me last week. I got back my paper I handed in for my first module last term. It was a year 2 module I completed online on the topic of Existential issues. I'm proud to say I got a distinction. I was only hoping for a pass as the grades you get don't matter at doctoral level but I must say, the ego boost was nice. Good to know my brain still functions well and that some things are still right in the world. If you work hard, you will receive the recognition you deserve. Now if only my health could follow that principle...

Leave a message

Apologies for not posting on Wednesday evening as promised but I just couldn't bring myself to do it. It is with a heavy heart that I write this post already and if I had written it on Wednesday it would have been filled with anger and despair. That is not to say that this post will be full of joy and optimism but at least after a couple of days I've been able to digest the bad news and vent my emotions out.

3 is NOT my magic number

I wish this was a good news post but unfortunately it appears the 3rd time wasn't that lucky after all. That isn't to say that all is lost but so far it's not looking very encouraging. Cortisol level day after surgery number 3 was 133 which had us very hopeful but unfortunately, after that the following days were all in the 300s. On Friday, the day I was discharged, it was 330 which was a little lower than the day before but still not low enough to consider me cured.

D Day

So I finally heard back from the hospital and I will be meeting the Multi-Disciplinary Team (MDT) on the 11th of December to discuss my IPSS results and what my treatment should be. The nurse I spoke to on the phone did say that they are suggesting another pituitary surgery which was to be expected since the source of my Cushing's is pituitary. However, we will be discussing alternatives including Signifor, the new medication, and bilateral Adrenalectomy (BLA). I want to make sure I explore all my options as the long-term effects can be very difficult depending on my choice. Every procedure carries its own risks and complications and nothing is every 100% sure. After all, people can die from even routine procedures like appendectomies. I know that no choice will be perfect but I want to make sure I make an informed decision and that the doctors realise that I want to be involved in the treatment and management of my own disease. After all, I'm the one who's going to live with the consequences for at least another 40 years (I hope!).

I am grateful that my parents are coming to visit me over Christmas and my mum is even flying over early so she can attend the meeting with me. I think it will help having an extra pair of ears listening to what the doctors say. Sometimes I feel overwhelmed by my emotions....

If we decide to go ahead with surgery (which is looking 80% likely), it will probably happen quite soon after Christmas. Although I'm glad I will be able to start the new year on my road to recovery, it also means that it will upset my studies, AGAIN! I'm starting to get used to it but doesn't make it any less frustrating. To think I'll be nearly 32 by the time I'm fully qualified!? I guess I should take comfort in knowing that I will have been  gaining some work experience (even if it has been mainly part-time) and will definitely have extensive life experience that no college or university can teach. It's a good thing I chose the field of Psychology. Probably one of the few professional areas where age is actually an advantage!

Where do we go from here?

So as I've already mentioned several times, I have a confirmed Cushing's recurrence. However, this time around things aren't as straightforward. You see, although all my blood tests and urine collections are showing increased cortisol, nothing is visible on the MRIs which isn't good. It's not good because if the neurosurgeon cannot see anything on the MRI he doesn't know what his "target" is and although he could just go in and identify the tumour cells visually (apparently they look different to healthy cells), I'm not sure I trust him THAT much...

So this is where I'm at right now: my endo and other doctors will be discussing my case in their multi-disciplinary meeting to decide what the next course of action should be. At that meeting there are several key doctors such as endocrinologists, neurosurgeons and radiotherapists. As I mentioned in a previous posts there are several treatment options for Cushing's disease including neurosurgery, radiotherapy, adrenalectomy and medication. Therefore they will all be discussing what they think is most suitable considering the details of my case. 

Roller coaster of life

We're always told that life is like a roller coaster, it has its ups and downs. But I don't think I ever realised how high up or how low life could really go until I was diagnosed with Cushing's. In the grand scheme of things I can't really complain as I'm still here, still living and breathing. But to be honest I wouldn't mind having a go on the merry-go-round for a while. The wooden horses only go up and down a little but mostly go round and round in circles. Sure it would get boring, but the slower pace would be nice once in a while.

I guess it just seems like since I've been suffering from Cushing's things go from one extreme to the other! And I'm not just referring to my mood swings...

Just a few days ago I was ecstatic because I found out that I'd not only completed my Masters, but I'd gotten 9 As and only 2 Bs meaning I would be awarded a mark of Distinction. And today, I find out that my Cushing's recurrence has been confirmed. I failed to suppress on both the low dose and high dose dexamethasone tests. It was such a crushing thing to hear. Sure I was somewhat prepared but still... You always hold out hope...

Forget you

Here it is, Friday's Cushie music video. I'd like to say that I will keep making more but I'm not sure I will still have inspiration. But I will definitely try.
In the mean time, please enjoy this one and feel free to SHARE with as many people as you want/can.
It's important to raise awareness for Cushing's whether it be through a humorous way like this or by talking about the more serious side.

Have a great Friday and weekend!

Out of sight, out of mind?

So it's been a week since my last post. Did you miss me? I promised that even thought I wouldn't blog every day I would still keep you updated so here's what's happened in the last week. (Quite a lot actually!)

The appointment on Monday went well. I met a very nice neurosurgeon who took the time to listen to me and seemed pretty knowledgeable. The bad news: the MRI was clear. You might be wondering why that's bad news, well because if the tumour isn't on my pituitary again it means it could be somewhere else which isn't exactly a very pleasant idea. I could have a tumour on my adrenal glands or anywhere else in my body.

But there is a chance of what's called a false negative which basically means that even though the MRI is clear there could still be some tumour tissue left. Even the smallest, trace amount could be enough to cause excess cortisol.

Day 28: Which came first, chicken or egg?

Which came first, chicken or egg?


One of life's philosophical questions is: Which came first, chicken or egg? One of my evolutionary psychology lecturer asked us this question back in year 1 of my BSc and we came to the conclusion that it cannot be answered. After all, it appears one cannot exist without the other.

Day 23: Drugs are bad mmkay

Drugs are bad mmkay


So here are the meds I've tried, have been on or currently am still on to "fix" my Cushing's and symptoms associated with it.

• Typical over the counter stuff for headaches e.g. Paracetamol and Ibuprofen
• Anti-depressants for off-label use as sleeping aids
• Melatonin for sleep
• Antacids
• Lansoprazole for stomach acidity
• Enalipril for high blood pressure
• Some diuretic to help make the BP med more effective
• Hydrocortisone (cortisol replacement)
• Dexamethasone for cortisol testing
• Tetralysal for acne
• Benadryl (which is suppose to be for hayfever) off-label use for headaches

I also tried some "natural" remedies such as Flowers by Bach for stress relief and Chromium Picolinate to reduce appetite.

The list actually isn't that bad but I just hate the fact that for the last few years I've had to take pills every day. But I shouldn't complain too much. If I end up having to have a BLA I will need to take more than 1 pill every day!

Come back tomorrow to find out what a BLA is and why I might need one.

Day 22: But who's keeping score?

But who's keeping score?


One of the suggested topic from the Cushing's website is to write about what we've gone through to try to be cured. I am not going to write about my long journey to a diagnosis again which you can read by clicking HERE if you want, however I will summarise all of the tests and interventions I've had so far (and that I can remember).

2009:

• 2 x "regular" blood draws to check cortisol levels
• 2 x 24hr Urinary Free Cortisol collection (collect all urine being passed for 24hrs)
• Low dose Dexamethasone suppression test (take dexamethasone doses and then have blood drawn at 8am)
• *edit* I forgot to mention that I also had a CT done of my kidneys

2010:

• High dose Dexamethasone suppression test (take dexamethasone doses and have blood drawn every morning at 8am over 2 days)
• 3 x MRIs, two without contrast and one with contrast (meaning having dye injected into the veins)
• 2 x 8am fasting glucose blood tests 
• 8 (maybe more) blood draws to check cortisol and other hormone levels
• Transphenoidal surgery (to remove the tumour)

2011:

• Low dose Dexamethasone suppression test
• 3 x 24hr UFC (urine collection)
• Bone density scan
• 1 blood draw to check baseline hormone levels

2012 (so far):

• 1 x 8am fasting blood glucose and cortisol level check
• 3 x 24hr UFC (urine collection)
• Low dose dexamethasone suppression test
• 1 x MRI

All I can say is WOW!!!! And considering I started testing in September 2009 and we're only in April 2012, I can't even imagine the countless amounts of interventions those who are testing for several years go through. I'd also like to point out that I have not included in this list all of the blood tests I did before when they suspected everything from PCOS to Thyroid issues.

No wonder I hate needles now and when I get to the blood draw clinic, if I see the nurse wearing a TRAINEE badge, I ask to change. Let someone else be a pin cushion for once...

Tomorrow's post: MEDS!

Day 21: Here we go again

Here we go again


So I finally heard back from my endo yesterday. I had emailed her back in February when I received the letter about my test results and it appears she refuses to reply by email opting for the ever so slow snail mail option!
Anyway, she confirmed that the 2 x 24hr UFC tests I did back in January showed elevated levels of cortisol (no idea what happened to my 3rd pee jug!? Sometimes I don't know why I bother...) and that I failed to suppress in the low dose dexamethasone test. For those who don't speak Cushie test lingo, UFC stands for Urinary Free Cortisol and is one of the standard tests for Cushing's. The lab tests the amount of cortisol present in 24hours worth of urine because your levels rise and fall naturally during the day. By calculating the average concentration, the lab is able to determine whether the result is low, normal or high. In my case, the results were apparently higher than normal. I also did an overnight dexamethasone suppression test which is basically a way to measure your adrenal glands response. When you are administered a dose of dexamethasone, your body should suppress its production of cortisol in response, however this is not the case if you have Cushing's. For more information about testing for Cushing's (or any other Cushing's related info for that matter) please visit the following website which is packed full of useful information: www.cushings-help.com

I know the drill, I've been through all these tests before. I know that the next logical step is a high dose dexamethasone suppression test to determine whether the source of my excess cortisol is indeed the pituitary gland. There are other possible sources of Cushing's such as a tumour on the adrenal glands or somewhere else. I will also probably have to have another MRI though I had one not long ago in HK and I am seeing a neurosurgeon about the results at the end of the month.

I am in a tough spot right now because I obviously need to tend to my health but there isn't much I can do here in HK. I have that appointment on the 30th and I also have an endo appointment in June but to be honest there isn't much point in getting anything started here now since I've decided I will be moving back to London. I am seeing my endo in London on the 17th of July and that will probably be when things really get moving.

In the meantime, I have to try and stay focused on the tasks at hand which are finishing my masters, applying to the DPsych (Professional doctorate in counselling psychology) and planning my summer holidays. I'm trying hard to stay positive though I have to be honest, sometimes it's tough and I really feel on the verge of a breakdown... I'm just grateful to have my parents so close as they help me deal and keep me sane. I just wish I had more of my friends around for support although I appreciate the virtual and long-distance support I receive.

Day 9: What do you do to improve your quality of life

What do you do to improve your quality of life?


There are many simple things that I do to improve my quality of life. None of these are miracle cures and they certainly don't "fix the problem" but they help me deal that little bit better. They help make bearable what would otherwise be unbearable.

I will separate these tips and tricks into 3 sections: Body, Mind and Soul. The reason I am doing this is because  I want to write these out separately however it is important to bear in mind that these 3 aspects of our being are interconnected and what you do to help your body will also help your mind and soul and vice versa.

For my body:

• Treat myself to foot massages when I can afford them
• Take bubble baths
• Manicure my nails so they always look pretty and colourful
• Take long walks outdoors to enjoy nature and fresh air
• Play dancing games like Michael Jackson: The experience or Just Dance on my Nintendo Wii
• Always have a hot water bottle ready for backaches
• Put a cold wet towel on my forehead when I get a bad headache

For my mind:

• Watch funny films
• Read interesting articles
• Write on my blog
• Try and learn something new at least every week if not every day

For my soul:

• Go to church
• Read inspiring books or poems
• Meditate
• Pray
• Be thankful and grateful for all the things I have

"Smoked" or "Cured"?

It's been 441 days since my transphenoidal surgery. My posts have become less and less frequent as I struggle with knowing what to write!
Sure, I could just blog about nonsense or whatever is in my mind that day but this blog is suppose to be about my journey with Cushing's so it doesn't seem right to turn it into a diary/journal of nonsense.
But the truth is, my Cushing's situation hasn't changed much in the last few months. I'm still having doubts about whether or not I'm really cured and still struggling dealing with the aftermath of it all...

When life gives you lemons...

Well I really haven't been very good at keeping my blog up to date. It appears I'm not blogging as regularly as before and actually by waiting so long in between posts, it means that when I do finally get round to writing something I just have so much to write!! It makes it all a bit tiring for us both. Me the writer, trying to succinctly summarise the events of the last few weeks, and you the reader, trying to feign interest for what's been happening in my life. Hopefully though you'll enjoy reading and if not, tough!

So when we last "spoke" I was telling you that I was about to get a new haircut and was waiting on some test results. So the good news first: well the good news is that I went for it, got a daring haircut with an undercut on one side and re-dyed some pink into it and I absolutely love it.

Now for the not so good news...

Part 3: The Cushie Revolutions

So in Part 2, I left you when my mum finally returned home and I was left to deal with the recovery alone.
I experienced a deep sense of loneliness and a part of me was scared. Scared about whether I'd be able cope, scared about what to do if anything should happen to me, but mostly scared about whether the depression would return. After all, I wasn't sure if all of the depression I experienced before was due to the Cushing's or if some of it was because of an unhappiness with my life.

Luckily there was only about 10days of being alone before I went away on holiday to visit my family in Morocco and France, but it turns out I didn't need to be scared! Of course there were times when I felt a bit lonely and sad, but these feelings didn't last very long and most of all, they were appropriate for the situation. For example, I would feel a bit lonely in the evenings when it was cold and I was having dinner alone. But I would be able to sit with the feeling and then move on, something I hadn't been able to do until then. Before the surgery, I would experience bouts of depression and not understand why! They would happen at the most random of times and I wouldn't be able to control them or even how long they would last. It therefore became very clear to me that all of those times before, I had simply been experiencing hormone driven mood changes which had practically nothing to do with my life...

Part 2: Say it loud "I'm back and I'm proud!"

So the first few days back at home all I could do was sleep. I had absolutely no energy and even taking a shower was exhausting. Thankfully my mum was still around to help me with the cooking, cleaning, etc or I fear I may have wasted away (or at least starved for a couple of days!).
The first week consisted mostly of sleeping, eating and going out at least once a day in order to get some fresh air. I could barely manage to read or go on the computer because at this stage I was still suffering from headaches and even though the painkillers helped, it was difficult for me to concentrate for long periods of time.
I couldn't really see much improvement and was getting very discouraged because once I had returned home and was no longer spending all day lying in a motorised and adjustable bed, my severe backaches had also returned. But after a couple of evenings something quite miraculous happened, I felt cold! Now this may seem pretty ridiculous to most people but for me, this was one of the first signs that things were different...

To blog or not to blog...

When I first started this blog my aim was to post everyday but I've come to realise that a) It's a bit time consuming!! and b) some days are best not to blog about...
Don't worry, it's not that the last few days have been terrible, it's just that they've been quite uneventful. Apart from the constant backache which I wake up with everyday, my headaches have also come back and I haven't had much energy. Hence, not a lot going on apart from the essentials.

I did have my usual CBT appointment on Friday though. In case you don't remember, I'm getting CBT to help me with my binge eating disorder which I developed alongside the Cushing's. It was an interesting appointment because it was the last one before my surgery and we won't be meeting again for another month. So we weighed me and talked a bit about how I felt about the surgery and brainstormed what eating meant to me. All these things are important because presumably if the surgery goes well and my hormones get sorted out, my appetite and metabolism should return to normal. I should also not suffer from as many mood swings and bouts of depression. I have been told that I can expect to lose weight but I don't want to be too optimistic and realise that I will still need to diet if I want to lose ALL the weight that I've put on. I'm being realistic, I don't expect to slim down over night but it will definitely be easier without my own body working against me! Even the doctor who diagnosed me, when I asked her about my diet and why I was having such a tough time losing weight (apart from that year in HK when I was eating less than 1200 calories and exercising 4hrs a day) said: "It's because you're fighting a losing battle!"
You see, it's not enough that Cushing's increases your appetite and messes up your satiety (sense of fullness) signals, it also affects your metabolism so that your body stores the maximum amount of fat. Basically, even a salad can be fattening, especially if you have sauce on it!