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...

So what does this mean, you're probably wondering. Well it means that I'm not done yet. I have more testing to do to figure out where exactly this recurrence is coming from. The doc here in HK thinks it's most likely from my pituitary again but since nothing was visible on the MRI I did in March, we cannot be certain. I am seeing my usual endo back in London on the 17th of this month and we'll see what she has to say. I will bring her all the results from the tests I did in HK and hopefully I can move on to the more "serious" tests rather than going through more urine collection or blood tests.

I asked the doc today what steps she would take next if I was her patient and this is what she said to me. Depending on the neurosurgeon, they may want to just go in and operate again, with hopes that they can locate the tumour visually. However, because this carries some uncertainty, they might do an IPSS first. I described IPSS in a previous post but basically it's when they thread a catheter up your leg all the way to your brain so that they can collect blood samples all along your body and figure out where the excess cortisol is coming from. Is it on the left or right side and at which level? Pituitary? Adrenal? To be honest, the procedure scares me a bit and I heard it can be very unpleasant but if it has to be done....

Then they would probably proceed with another transsphenoidal surgery to cut away the tumour tissue and maybe a little more of the pituitary.

I questioned the doc about a BLA (removing the adrenals) and she told me that in HK that is considered a LAST RESORT. Basically, before they would get to that they would attempt everything else including up to 3 neurosurgeries and radiotherapy.

When I was talking about the news with my mum today she said that since I'd done the TSS (transsphenoidal surgery) before, at least I knew what it would be like. But the truth is, part of me really doesn't want to have to go through it again! It was scary enough the first time but to risk it again? I know it's silly of me to think like this but I feel like every time I undergo something which has a risk of complications or even death, it's like I'm tempting fate. I was lucky enough to survive unscathed last time but will I be so lucky this time? Plus, I feel so unhealthy at the moment! I'm the fattest I've ever been and my blood pressure is through the roof. Not to mention the terrible water retention I've been having. But even if everything with the surgery goes well, what if my pituitary gets messed up? What if I have to start replacing other hormones?

So many questions and fears... 

I really could not have anticipated I would every be going through something like this at such a young age... Part of me actually wishes I'd enjoyed life more when I was younger and care free. I wish I'd drunk more booze, done more drugs, kissed more boys... Some of you might think this is stupid or funny or crude but it's just how I feel. I actually played it relatively safe when I was younger and now that my 20s have gone by without me being able to enjoy them I feel robbed! 

I actually posted in one of my groups how sad I was that I haven't been able to dance for the last few years. I also asked whether it would be possible to learn break-dancing at the age of 30! Because you see, I've always wanted to be able to do back flips and windmills, but I never got round to it. Now I fear that by the time I'm healthy again (if that ever happens), I just won't have the strength or flexibility to do these things. I could try but I'm not sure it's possible for a recovering Cushie to get enough body strength for it.

You really don't know what you've got till it's gone. For years and years I took for granted that I could dance. I took for granted my stamina, gracefulness, and strength....

I can promise you one thing though, as soon as I can get healthy and fit again, I'm not holding back any more. I will join every break-dance, salsa, krump, WHATEVER class I feel like. And I won't be embarrassed to be who I am. If I could do it now I would. I've actually started to accept myself the way I am, fat and all but the reason I don't go to dance classes right now is because I can barely walk up a flight of stairs. The more I push my body the more it denies me by breaking down even more.

I'm praying for a miracle now...