Finished chemo Dec 2011. Mar 2012 was diagnosed with Central Apnea – brain MRI fine – phew. Inflammatory tenosynovitis made my hands claw up and feet immensely painful to walk…

Sept 2012, brain MRI still fine – phew. In Mar 2013 the inflammatory tenosynovitis responds to steroids so Rheumatologist says its reacting to something, we don’t know what…

Next June 2013 the polyuria has gone nuts… 3-4 litres a day became 4-5L, 5-6L, 6-7L, 7-8L with me getting progressively more nausea, sleep attacks, flushing and dehydrating by 500ml-1.5L a day… what was this? Endocrinologist wrote ‘Diabetes Insipidus‘. But this couldn’t possibly be brain metastases (mets), because my brain MRI was good just 9 months ago… oh, so an MRI can miss pituitary tumors under 3mm… well I wouldn’t have one anyway because I don’t have vision problems, my balance is fine, I don’t have a headache… the elephant in the room winks.

Whilst awaiting the fluid restriction test to find out how much Desmopressin they could give me to turn off the water works I laugh my head off with pals and start choking, coughing something moving low in my lungs like I’ll cough up a lung… think nothing of it… happens two more times in a week, I wake up with a coughing fit… but I feel fine… I keep a healthy dose of denial in my pocket at all times, its my drug, it keeps me laughing…

I’m dizzy and its like free drugs, but the dizziness is on, then off, then on, then off… the floor feels like it has dips in it… and I think, oh shit, what does 7-8L of urine output do to diluting my Tomoxifen and if that’s meant to be protecting me from cancer cells proliferating… and I research Diabetes Insipidus… ok, so it can be mets to pituitary-hypothalmus… what does hypothalmus do… thirst, hunger… oh… so now I understand why I was on 8000mg sodium with no thirst whatsover and why I’m dehydrating trying to keep up with the peeing. They didn’t find the sodium in my urine or blood levels… said that looks like Salt Wasting… I look that up… hmm, brain injury… hmm….

I was in trouble… damn… but I feel well, I insist I do… and if I insist then nothing can get me, no bogie man, no cancer… and I look up laughing + choking cough and see it can also be lung mets… but I still say, no, I’ll be lucky, it will be sarcoidosis or something manageable… and besides I have no pain, I’m not coughing blood, its only when I laugh, or mostly….

Sure, I have primary immune deficiencies, but why shouldn’t I be one of the 70% who have early breast cancer, have double mastectomy, chemo, Tomoxifen and life happily ever after… with a body thank you… sure, the elephant in the room understands and is winking at me again. Heck, maybe I’m channeling the elephant and that’s why I pee up to 8 litres a day. I see the oncologist tomorrow. I’ll wear some sequined red shoes just in case he is actually the Wizard of Oz 😉

He’s gonna fix all this, isn’t he? We all know he can, and that he will, or that they’ll find nothing… and I’ll go home and live to be 80 (if I don’t drown in urine).

And the elephant winks 😉

UPDATE: Lung X-ray was normal 🙂 No cancer there. Yay! Bloodwork re pituitary function looks good, wouldn’t indicate brain tumor, although not definitively, only an MRI of the pituitary would validate that completely, but its a good sign. Fluid Restriction test for the Diabetes Insipidus (14 blood tests in 14 hours, urine tests on the hour… aiaiai)… conclusion: autonomic neuropathy causing polyuria, so at least now we have a clearer idea of what also caused the central apnea…. EDS does come with mild autonomic neuropathy but the endocrinologist felt chemo had taken that and exacerbated it…. which means essentially nerve damage… hoping of course that its not paraneoplastic (caused by signals from cancer) as 60% of cases of autonomic neuropathy in cancer patients are paraneoplastic, but I did have an anti-hu test and that was negative so I’m at least definitely not a definite case of paraneoplastic autonomic neuropathy and in time I’m sure we’ll find out if I stay that way.

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