This is proving to be an important motto in our world. One step at a time. It’s one of the things Kiran and his journey have taught me: I can’t overwhelm myself with all of the future what-ifs. I have to look at the place we are currently walking on this journey, instead of ten or even two steps ahead. (One step ahead is important for planning/anxiety reducing purposes, of course, but rarely two).
We had a conference call with Kiran’s oncologist yesterday to go over the results of his labs from a few weeks ago. Only one was elevated – substance P – but she feels it fits in with his flushing symptoms and could still be indicating the presence of a neuroendocrine tumor.
Don’t google that. Just don’t. Stay on this step with me.
Substance P is also something that can get elevated due to stress/emotional levels, like…getting blood drawn for labs. But of course, he has the flushing symptom happening as well, and that does not (as far as we can tell) correlate with change in stress/emotional levels.
Neuroendocrine tumors are apparently very difficult to diagnose. They are slow-growing tumors, most often found in the intestine, though sometimes in the neck or lungs. This is why we have been waiting for imaging, because oftentimes in the early stages, the tumor/lesion can be so small that it cannot be seen in a CT scan. They take months or even years to change in size, so since Kiran’s symptoms haven’t changed in a year, nothing is urgent at this time.
Our plan is to repeat the labs in two months (from the last lab draw), sometime in March. If we are still seeing elevated substance P or any other changes to other numbers, it may be time to discuss a CT scan for Kiran. This would be a scan going from neck to pelvis, to cover any of the areas a neuroendocrine tumor may be growing.
In the meantime, we have our usual symptoms to watch out for, and I continue to document anytime I notice the unilateral flushing. It is still so bizarre to me how quickly this went from probably nothing to a possible tumor – it seems Frey’s Syndrome has been ruled out, at least by the two specialists we have been working with to get answers (neurologist, oncologist). It’s too bad. I liked that diagnosis so much better than this potential one.
One step at a time. I am aware we may still find this is just something else about Kiran we can’t quite find an explanation for – it isn’t necessarily or for sure a neuroendocrine tumor. But it might be, which is why due diligence is also the name of our game.
One step at a time, with some planning for the next step. But this step? It’s big enough to wrap my head around and accept and handle. I don’t need to take on the next one, just yet. And Kiran doesn’t need me there either. He needs me right here, walking next to him.