Hormones, dating and other facts of life

Well the news since the last post regarding my health, is that I underwent the Insulin Stress Test (IST) and got my results. The IST is a test during which you are placed in hypoglycemia and blood samples are collected every 30 minutes for two hours, to check your body's hormonal response when placed under stress. It was a fairly unpleasant experience as anyone who has ever been hypoglycemic can relate to. The target was to get my blood glucose down to around 2.2 (Normal range 4-6) for the results to be valid. My blood sugar level dropped to 1.3!! No wonder I felt like shit!!

It appears that my cortisol levels lowered during the test, indicating that my body is unable to secrete cortisol in times of stress. This means that I still have cortisol deficiency and should keep taking my hydro (good news actually!). The report also states that there was no growth hormone secretion throughout the test and in fact, we already knew that my levels were low if not inexistent. What this means is that I will probably have to discuss growth hormone replacement as this might help alleviate the fatigue I've been feeling. Growth hormone is responsible for distribution of fat and brain functioning among other things. So don't think it's only important in kids, we ALL need it.

Awareness day

I can't believe how long it's been since I've posted anything on my blog! I'm sorry to those who actually read it, as I have not been updating you with my progress. In a way, it's kind of a "No news, good news" situation, but that's no excuse...

After the traumatic and terrifying experience of the emergency surgery to repair my CSF leak, I have slowly but steadily been improving. I think I can point towards Christmas and New Year as really being the turning points for me, energy-wise. Since the beginning of the year I have rediscovered myself and my enthusiasm for life, in large part due to the fact that I have felt much better in myself. That isn't to say that I am back to my pre-Cushing's state, but the reality is that might never happen. However, I have been losing weight and been able to go to the gym a couple of times a week. I have also started to accept myself and love myself that little bit more. I don't think even my own best friends and family realise how low my self-esteem had gotten....

Another major difference is that I have actually started feeling good enough about myself that I have started to venture into the world of dating! Now I'll be completely honest, it's been tough. A lot of shit men who didn't appreciate me and one great guy who broke my heart. But I guess I should focus on the positives and the fact that I am even dating, full stop, is pretty amazing in itself. For years I had not felt beautiful or even worthy enough of someone's attention, let alone love. The last few dating experiences haven't exactly disproved this belief but what's important is that I took the risk. I opened up and allowed myself to get close to someone and that's something which I haven't been able to do in years...

On this awareness day, I am reminded of how impactful Cushing's has been on my life. To say it has completely taken it over is a bit of an overstatement but the truth is that it has affected me in many ways: physically, psychologically and emotionally. It has affected my relationships with others (or lack thereof) and my ability to fulfil my aspirations. BUT, it has also given me an inner strength and determination I never knew I had, taught me serious life lessons and made me appreciate all that I have in life. I have lost a lot of things along the way: friends, (body) confidence, faith in God, the ability to bear children and my entire pituitary gland, but I'm still here! "To live is to suffer, to survive is to find some meaning in the suffering." - Nietzsche

Nietzsche was right! I have gotten to know this philosopher fairly well thanks to my course and I believe he sums it up beautifully for me:

“Amor fati (love your fate): this is the very core of my being—And as to my prolonged illness, do I not owe much more to it than I owe to my health? To it I owe a higher kind of health, a sort of health which grows stronger under everything that does not actually kill it!—To it, I owe even my philosophy.… Only great suffering is the ultimate emancipator of spirit, for it teaches one that vast suspiciousness which makes an X out of every U, a genuine and proper X, i.e., the antepenultimate letter. Only great suffering; that great suffering, under which we seem to be over a fire of greenwood, the suffering that takes its time—forces us philosophers to descend into our nethermost depths, and to let go of all trustfulness, all good-nature, all whittling-down, all mildness, all mediocrity,—on which things we had formerly staked our humanity.”

― Friedrich Nietzsche

Not all leaks are enlightening....

SOOOOOO much has happened in last few weeks I barely know where to start! I guess the logical place is to start from the beginning.

As you may recall from my last post, I had my fourth neurosurgery on the 16th of September. This time I had a complete hypophysectomy (they removed ALL of my pituitary gland). It was tough! I had a real hard time coming out of the anesthesia, feeling very rough and even throwing up several times. But thanks to a strong cocktail of painkillers and anti nausea meds, I was feeling "normal" within a few days. On the 20th of September, exactly 3 years since my first neurosurgery, my specialist nurse told me that my cortisol results had finally come back low enough to consider me cured. I was over the moon!!

By Saturday I was home and I thought this was the beginning of my road to recovery. Boy was I wrong...

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.

Embrace the highs and push through the lows

So it's been a pretty tough week with a follow-up appointment on Tuesday where I found out I had to have all my pituitary removed, but today has been a good day so I decided it would be a good day to post.

I often find that if I try to blog when I'm feeling down, all that comes out is sadness and venting. I don't like to put too much negativity on my site. Not to say that Cushing's isn't a bitch to deal with and the reality is that there's a lot of negativity involved. But I think that the other Cushies out there who might read this have enough pain and suffering in their lives that they don't need to hear all the doom and gloom in mine too.

I think it's important that when I feel good, I share my positivity and good mood with others. After all, they say laughter is contagious so maybe I can send my good vibes out too!?

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.

3rd time lucky?

Well it looks like luck is not really on my side! I had my 2nd surgery on Friday the 25th of January. It went well, no obvious complications though I did have a diabetes insipidus scare for a couple of days, but it failed to cure me. 

My cortisol post-op was as follows:

• Day 1: 800ish
• Day 2: 400ish
• Day 3: 189
• Day 4: 136
• Day 5: 200
• Day 6: 400

What a disappointment!! After Tuesday's level of 136, I really thought it was going to crash and I'd be able to go home so when I found out on Wednesday that it was going up it felt like a shot to the heart. The nurse came to tell me and said the neurosurgeon would come speak to me herself about what we should do next.

The day before I had been told that there was a chance I might need a 3rd operation but the nurse said she didn't think that would be the case for me! Boy was she wrong but in a way, I'm grateful she alleviated my fears as it allowed me to sleep that little bit more soundly that night.

Anyway, back to Wednesday evening. At about 8.20pm my surgeon finally arrives to my room, has a seat and informs me that she does firmly believe that a 3rd operation is necessary and that this time they might even need to remove up to half of my pituitary. Now I am an information hoarder and I like to read up a lot on my disease and treatments etc, so I know that removing half of the pituitary can have serious ramifications on my hormone functions (as I mentioned in my previous post). But I have to say, after speaking to my surgeon for about 20-30 minutes, I was convinced. Both she and my endo truly believe this is my best chance at a cure and I trust their judgement. They are both some of the most experienced and well respected medical professionals in their respective fields in the UK and I couldn't be in better hands.

Sure, I'm worried about what pituitary function I will have left but if I'm rid of Cushing's it will be the start of a new and better life for me. All the other hormones can also be replaced and strange as it sounds, I will have a longer, healthier life even if I'm on 5 pills a day. Because at the end of the day, Cushing's kills!

So this evening I'm heading back to the hospital. I've been at home the last couple of days as I asked for a "weekend leave" so that all this could sink in and I could digest everything that was happening. I wanted to spend some time with my dog and chat to several of my friends and family on the phone and using Skype. I will be having my 3rd surgery tomorrow morning, Monday the 4th of February. Let's pray that, like my driving license, it's 3rd time lucky for me and I'll finally be rid of this stupid disease... 

Surgery, the sequel

Well folks, the time is now! In a couple of days I'm being admitted to the National Hospital for Neurology and Neurosurgery for my 2nd pituitary surgery. I must admit, I'm feeling a little apprehensive but also kind of looking forward to it. I mean, of course I'm worried about the risks and possible complications but I'm also excited about the possibility of finally being cured. Nothing wrong with being optimistic and hoping for the best!

I'm realistic, I know the odds are against me and I'm likely to suffer from some pituitary damage and loss of hormone function, but the thought of getting some of my life back keeps me strong. My mum is arriving this evening and she'll be here for 6 weeks to help with my recovery. I'm grateful to have the support of my friends and family, and feel blessed to be alive and loved. I'm also really happy that Pepper (my retired greyhound) will be here to help keep me motivated during those long weeks when I feel terrible and all I want to do is sleep. 

I've decided I want to document this time better than the last. In 2010, I took a few photos here and there but didn't keep a strict journal. This time I'm gonna do it right! Take a photo of my face every day over the next few months so I can really see the changes. When you see yourself in the mirror every day it's hard to notice and you sometimes feel defeated. This way I'll have photographic evidence!

If I'm bold enough I might also take full body shots. Don't worry, they'll be fully clothed...

On a positive note, the last few nights I've been having dreams in which I'm back to my normal size. I'm taking it as a sign that I will soon be able to find clothes that fit me on the high street and begin exercising again! This year I AM making New Year's resolutions and they're gonna be the typical diet and exercise ones but at least this year they might work...

2012, a retrospective

Well here we are, the end of the first week of 2013 and a good time to look back on all that's happened in 2012. But let me start off by informing you all that I received my letter from the NHS and will be admitted to hospital on the 24th of January. I'm guessing that means my surgery will be happening on the 25th. I'm actually quite impressed by how quickly I got a date as I was expecting it more to be around early February. So my mum flew back to Hong Kong with my dad yesterday and she will be returning around the 23rd so as to spend time with me whilst I'm at the hospital and during my recovery. Last time she stayed around 6 weeks and I can honestly say it was a blessing having her around. 

2013, a promising year

It was my birthday yesterday! I turned 28. I can't believe I'm already edging closer to my 30's. I honestly feel like I should get a refund on my 20's! But I'll save my ageing rant for when I actually turn 30...

I wanted to let you know how my appointment went. On Tuesday the 18th I met with my endocrinologist, a specialist nurse and a neurosurgeon. As you may recall, I've mentioned in previous posts having several questions I wanted to ask regarding my treatment options. For example, why was I not being offered medication or an Adrenalectomy? So on Tuesday I finally saw my usual doctor and was able to ask all the questions I wanted. In fact, I was really impressed by how informative and sensitive my endo and the neurosurgeon were. They both took the time to explain their findings to me and why they felt that a 2nd pituitary surgery was the best way forward.

Postponed

For those of you who follow my blog you may be wondering why I haven't given you an update following my appointment. Well it's because my appointment was postponed to the 18th of December. They actually told me a little while ago but I forgot to post it on my blog.

Thanks to those of you who expressed concern and asked about whether I had received any news yet.

I will definitely provide you all with an update after the appointment.

In the meantime, you'll be pleased to know that I'm doing quite well. I've been super busy working on several projects for Genetic Alliance UK, a charity with which I have been doing work on and off for since 2009. It's interesting work involving research and is for a great cause. They represent patients and patient organisations concerned with genetic diseases. They also have a project called Rare Disease UK which is specifically concerned with rare diseases. So you can imagine why I am so happy to work for this charity and thrilled that I am able to contribute something useful.

Also, Pepper (my beautiful greyhound) is settling in well. She's starting to show her personality a little more but is still a very chilled, easy going dog who adores cuddles and food. They do say dogs resemble their owners....

So I leave you with some pictures of my beautiful new best friend:

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!

Spice up your life

Well after all the drama of the last few weeks and the still impending test results, at least there has been some slight joy in my life lately. I finally brought home my new dog last week. Her name is Pepper! Her racing name was Hot Stepper and she seemed to respond to Stepper in the kennels so I wanted to change it to something that still sounded familiar. Though to be honest she's only just starting to respond (slightly) so I could probably have changed it to something else. Never mind, Pepper is a cute name though apparently extremely common in the UK as about 3 people have already told me that "OMG, [insert relative's name here]'s dog was called Pepper!".

What doesn't kill you

There is an old adage that I often use which says that what doesn't kill you only makes you stronger. I wonder if the strength you gain is proportional to how close to death you come or how much you actually suffer. Because if it is, I should be as strong as an ox by now! (Or at least a very strong cow!?)

On Thursday the 1st of November, I checked in to the National Hospital for Neurology and Neurosurgery in Queen's Square, London. I showed up at 9am, having fasted from the night before and mentally ready for the Inferior Petrosal Sinus Sampling (IPSS). But I don't think I was prepared for the day ahead of me. Firstly it turns out that contrary to what was stated on my letter, I did not need to be there for 9am as I wouldn't have the procedure until 2pm. Which also means that I didn't have to start my fast until later that day. But because the nurses were unsure and as usual no doctor was around to give correct advice, they refuse to let me have anything except a small glass of water. 

Quick update

Just a quick update this time. I've not forgotten about you but I've been pretty busy actually having a life (nice change!) My doctoral course has started, I'm attending more social events and have started going to the gym 3 times a week so my days are starting to fill up which is nice.

So the update is that I have a date for my IPSS. I have a pre-admissions assessment on Tuesday the 23rd of October. This is when you undergo a series of tests that check that you are suitable for the procedure e.g. blood pressure, weight, etc... Then, provided I get the all clear, I am being admitted on the 1st of November. The procedure will take place in the afternoon and should last a couple of hours max. I am required to stay overnight so they can monitor me. 

I've had mixed reviews about this test with some people saying it's a horrible experience and others saying it wasn't so bad. Thanks to a friend of mine I'm able to think about it in a positive way and am feeling more relaxed about the idea now. She encouraged me to visualise it as a positive experience by switching my way of thinking. Kinda like going from seeing it half empty to half full. So instead of thinking: "OMG, I'll be able to feel everything" (in a panicked, nervous way) think: "Wow, how fortunate I am that I'll be able to feel everything, they won't be doing anything without my knowledge" (in a calm, optimistic way). It's easier said than done but I've been practising every day and I really feel like I've made some progress. So much so that I will not be asking for full sedation, maybe just a little something to calm my nerves. We'll see...

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. 

Being ME

Hey blog readers!

Hopefully some of you watched the videos I posted from the US. I only ended up making 2 which is obviously not very impressive and they were very short but turns out I am much more camera shy than I thought! I was also having so much fun and was just so busy that I thought "I'm sure my blog followers will understand"...

I got back from the US on Sunday the 23rd after nearly 3 weeks of sightseeing, connecting with friends and enjoying life! I really didn't want to come back. I mean, I missed my place and was starting to get a bit tired of living out of a suitcase but I have to admit, it was nice just being carefree and enjoying myself. Now that I'm back, it's back to reality and it's not easy....