For some months now I’ve been peeing vast volumes of urine. I kept increasing my sodium intake to try and stop this. Because I already had central apnea (diagnosed in March 2013, 3 months after chemo for breast cancer in 2011) it was thought I had a salt wasting syndrome. But we didn’t test for it. I developed severe clawed hands and severe pain and immobility in my feet. Nobody knew what it was. It got diagnosed as Inflammatory Tenosynovitis with an MRI of my hand in March 2013.

I had been referred to a specialist in Ehlers-Danlos Syndrome in March 2013. I had the standard history and physical issues of EDS and because I had three cousins who had ruptured I was told that it was a high probability that my EDS was the life shortening form – Vascular EDS – in which 90% of those known to have it die before age 48. I was 49. On the other there ARE 10% of those with VEDS who live into their 50s, some have end made it to their 60s though really struggling with its ravages. But if I want to make it to my 50s, who knows, why shouldn’t I?

I asked him if this is what caused the central apnea – no, whilst obstructive sleep apnea was commonly part of EDS, central apnea was not. What about the inflammatory tenosynovitis? Tenosynovitis from straining connective tissue was common in EDS, but inflammatory tenosynovitis was something different, it was reacting to some process in the body.

I developed polyuria, peeing vast amounts of urine, but I presumed it was part of the general autonomic dysfunction of EDS. But when those volumes were not 2-3 litres in 24 hours but 3-4 litres and eventually up to 7 litres a day, I was now with an endocrinologist. I was clear for blood sugar diabetes and my kidney function looked fine. I was now being tested for Diabetes Insipidus and a range of indicators of pituitary function including those that would indicate pituitary gland tumors.

Around 30% of women surviving early breast cancer later develop metastates (mets)… the cancer is found in places away from the breasts but originated from the original breast cancer tumor before it was removed and, if the person had chemo, metastases arise from cancer cells that were not kills off by the chemo. If you think of a tumor as a dust bunny, you can imagine how particles, how cells, can break away into the blood stream as well as the lymph. My 3cm tumor already had a vein system by the time we could it, potentially already having cells travel into my blood, setting in other parts of my body. Am I scared? No, I’m factual.

Brain, liver and lung mets are common. The pituitary gland is at the base of the brain just above the brain stem. Brain stem injury is a cause of central apnea but MRI didn’t find any. The pituitary gland is around 8mm in size, the size of a pea. Most pituitary gland tumors are micro and one that is under 3mm is commonly missed on standard MRI, even with contrast. Where around 50% of pituitary tumors under 3mm will be missed on a standard MRI, 100% will be found on a Pituitary MRI.

There are two types of Diabetes Insipidus; Central (brain) and Nephrogenic (kidney). My kidney function tests indicate my kidneys are ok, but only a fluid restriction test can tell one form from the other. We’ll see.

There are several causes of Central Diabetes Insipidus, most of them ominous: recent brain surgery, traumatic brain injury, sarcoidosis, benign tumor (and 1 in 10-20 people have these though only 1 in 1000 of these cases does it become clinically active), metastatic tumor (from somewhere else), and hormones from a metastic cancer that mimic those produced by the pituitary. Around 50% of cases are idiopathic, meaning no cause was found at the time, perhaps sometimes because 50% of pituitary tumors under 3mm are missed by standard MRI. But there is also some literature on Central Diabetes Insipidus caused by aneurysm of the artery supplying the pituitary and hypothalmus in Vascular EDS. So if that were the case we’d find that on an angio which would show any aneurysms (my cousin has multiple brain aneurysms so its feasible).

IF my Diabetes Insipidus is a pituitary tumor and IF that is cancer and IF that is then part of metastatic breast cancer then I know I’m NOT dying. If I found myself facing mets what’s important to me is not whether I’ll choose to ‘fight to the end’ or take the express with Dignitas in Switzerland.

What’s important is that IF one day mets ended up killing my body, I would NOT be dying, not at all. I refuse to accept the term. I choose instead to see it as metamorphosing because I have no doubt and complete faith that I would only be giving up the body, that my spirit would live on in Chris and all who have known me and invited me into their hearts, minds and lives. I would be there with them for as long as they invite me.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
http://www.donnawilliams.net