Damn, this has been a hard month. First, I started The Fight with medical aid to get cover for The DNA Test.
It made me sick to my stomach to fight like that. It was a battle I picked reluctantly. At the advice of a friend, I enlisted the help of the intermediary/broker to take up the fight on my behalf which certainly helped my nerves. She was just as astounded as I’d been. Without the gory details, it’s a dead end – for now.
Second, I’m on daily meds now for migraines. It’s taken me about 6 months to find out that apparently, the tension is being cause by a hungry tumour latching onto muscles in my back to get blood flow. Sure, it sounds science fiction-y but I’m relieved. I realised how poorly I’d been sleeping because of the discomfort. I’m a much happier person now, not having to bite back some tired beast in pain. What a luxury to sleep on both sides!
Third, if there’s an upside to the latest news, it’s clouded by depression. It’s yet another step in the directionless journey. I visited the onco last Friday.
Until now, no one thought to consider the effect of my oestrogen levels which has yielded these, erm, interesting results.
95% of tumour cell nucleus is oestrogen-something*
80% is progesterone
*(I forget the wording on the report but it’s academic whether the follow-on is “- dependent” or “-philic” or “-filled”)
17 – surgical menopause
It means the high dose chemical oestrogen that I’ve been taking since I was 17, ostensibly to prevent early onset osteoporosis among other things, has been feeding the tumour cells. 22 years of feeding frenzy. It does show how indolent the faulty cells really are, though
Like throwing a vehicle cruising along in top gear straight into reverse, I’m coming off the oestrogen as fast as possible but as carefully as possible – so as not to flip the moving vehicle – and will begin taking hormone blockers so that no more oestrogen or progesterone can be taken up by the tumour cells. This alone may (or may not) halt the tumour growth.
40 – induced menopause
Of course it’s not as simple in real life as it is on paper. I’ll be consulting the dietician who works with the oncologist. Her job is to make sure I supplement (through natural foods, duh) properly so that the menopause I’m being flung into doesn’t drive me to jump off the nearest bridge (or throttle anyone). The diet will also help my handicapped gut to optimise absorption and ensure it still functions proficiently. It’ll also help prevent migraines to which I’ve become so prone.
Plus I have to get used to the idea of and learn about menopause which I might not have done for another decade (maybe) normally. But what’s normal about my situation anyway? It’s not always fun being at the head of the learning curve as I find myself peerless – once again.
And Ms Dietician’s going to wag her finger at me because having filled out a pre-consultation form, I can see in black and white that I’m under-nourished. That’d explain a few things. Without making excuses and providing reasons, it’s my own doing.
That DNA Test & a clinical trial
The urgency of the oncology-specific DNA testing has taken a further back seat. It’s already known that my tumours are slow-growing so it can wait. The test would’ve sorted out whether the clinical trial drug PDL1^ would work with/for me. This expanded access clinical trial (for PDL1) can only be carried out in SA once results from European testing are available – which will be in approx. 3 months. The DNA test would probably be done under the auspices of this trial anyway. Hoo-freakin-ray for open-minded, progressive Europe.
^PDL1 is the drug that stops the cancer’s masquerading to show it for what it is and my system would then be able to fight it as the foreigner that it is.
Ok, even I can see the good news in this now; I can put aside the stress of fighting with medical aid to cover the cost of The Test.
Next time, dear twisted-with-torment gut, I’ll listen to you when you don’t want me to start a fight.
About that big pause
Having done a bit of reading now, it’s struck me that I may already have been living with some of the side effects of menopause. If they’re about to get worse, watch the hell out! To my benefit (big tongue in cheek), at least I can pinpoint an exact date when it’ll all start to happen unlike the majority of the female population. Hah!