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...

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!

Day 26: Bilateral Adrenalectomy

Bilateral Adrenalectomy a.k.a. BLA

Many patients opt to have a BLA after several unsuccessful pituitary surgeries or when a pituitary tumour is not visible. Sometimes BLA is the first option if the Cushing's is caused by tumours on the adrenal glands. In my case, the tumour was on the pituitary gland but I don't know where the source of my recurrence is.
I have met several people who after 3 pituitary surgeries finally have a BLA as they still have Cushing's symptoms.

I couldn't find a good video explaining what BLA is as the only videos on YouTube are of the actual procedure which again, freaks me out! Feel free to have a look for yourself but I'm staying clear.

Here's a description from a website:

Open adrenalectomy
The surgeon may operate from any of four directions, depending on the exact problem and the patient's body type.

1. In the anterior approach, the surgeon cuts into the abdominal wall. Usually the incision will be horizontal, just under the rib cage. If the surgeon intends to operate on only one of the adrenal glands, the incision will run under just the right or the left side of the rib cage. Sometimes a vertical incision in the middle of the abdomen provides a better approach, especially if both adrenal glands are involved.
2. In the posterior approach, the surgeon cuts into the back, just beneath the rib cage. If both glands are to be removed, an incision is made on each side of the body. This approach is the most direct route to the adrenal glands, but it does not provide quite as clear a view of the surrounding structures as the anterior approach.
3. In the flank approach, the surgeon cuts into the patient's side. This is particularly useful in massively obese patients. If both glands need to be removed, the surgeon must remove one gland, repair the surgical wound, turn the patient onto the other side, and repeat the entire process.
4. The last approach involves an incision into the chest cavity, either with or without part of the incision into the abdominal cavity. It is used when the surgeon anticipates a very large tumor, or if the surgeon needs to examine or remove nearby structures as well.

Laparoscopic adrenalectomy

This technique does not require the surgeon to open the body cavity. Instead, four small incisions (about 0.5" [1.27 cm] diameter each) are made into a patient's flank, just under the rib cage. A laparoscope enabling the surgeon to visualize the inside of the abdominal cavity on a television monitor is placed through one of the incisions. The other incisions are for tubes that carry miniaturized versions of surgical tools. These tools are designed to be operated by manipulations that the surgeon makes outside the body.

I think that the majority of patients have Laparoscopic surgery now (thankfully!!)

So what are the pros and cons of this one?
Again, apart from the obvious risk from the surgery itself. Cons:

• Longer recovery time
• Bigger risk of infection as there are more wound sites
• Lifelong medication (your body will no longer produce cortisol therefore you must take medication to replace it)

I actually struggle to find many pros apart from the fact that it has high success rate of curing Cushing's! I know a few people who have had a BLA and now lead happy, healthy lives. But the truth is, this procedure scares me. The idea of removing my adrenal glands completely.... Well let's just say I'm exploring my other options first.