I had a pleasant surprise today, hearing that my CgA (Chromogranin A) test from March was recorded 200 U/L. This extends a previous slow but steady downward slope which was interrupted last September by an upswing. As I had suspected, and hoped, the upswing was likely related to the point during my treatment cycle at which the blood was taken and measurement recorded.

I am booked for another round of "nuclear medicine" (MIBG) in Edmonton on July 18. According to the call I received, my treatment will be changed after this visit to receiving 125 millicuries of I131 every six months.  I have made a request to meet with head doctor to hear his perspective on how he thinks the treatment is going, and his strategy.

I'm still a bit worried about the tumour on my right iliac crest (the outer edge of the large flat wing like bit of the hip bone) which is growing despite the MIBG treatment, though so far it is not giving me significant trouble. However, I hope to try and do something about it this summer, because ultimately it will cause problems if nothing stops it.

When I started this blog, I didn't really have a plan other than to keep everyone who cares in touch with what was going on for me medically. In many ways this was so that I didn't have to remember who I'd told what to. It was not meant to replace phone calls or visits but potentially to complement them. If you didn't fancy awakening the cancer bore in me, you could read the essentials and avoid even talking about it with me. It can also be used as fuel for deeper questions about my condition and treatment if it interests you. But, blogs need new regular content and in many ways, thankfully, I'm not generating that much of it. So, the posts are less frequent and less engaging. I'd hoped to be able to just add a subscribe box so that you didn't need to check the site and find nothing has changed - but it wasn't so easy. Currently if you subscribe (in the left column) you get a notification that a posting has been made - I'll try and refine it later!

It's all going differently than I expected, but in many ways better than I expected too. I had no idea I'd be in such good shape and so fit, but not in remission. Nor did I expect to get exhausted so quickly and sleep so much while continuing to look so healthy to everyone I meet. Strange contradictions abound in this business. I feel better than I have for a couple of years, but I still have one growing tumour and the others are not shrinking with just the MIBG treatment. I also have a strange potpourri of symptoms like persistently itchy right foot arch, aching bones and joints, and a very unnerving rotting taste in my throat especially after treatments... I won't go on.

So, it is very far from being all bad. While my life has changed considerably, I'm still enjoying it hugely and plan to do so for a while yet. I would love to see real advances in the understanding of function and halting Paraganglioma metastasis, and even in removing existing multiple tumours, but until then I will try to keep growth at bay with all the tools at my disposal.

Seeing the light has taken on another level of meaning as the first photographs of light waves are being produced. This one is of a pulse of light that is 2.5 billionths of a millionth of a second long (from Science.)