Ugh. I promise I will write up the insurance nonsense and about how surgery went. For now, I need to get these thoughts in one place so I can start making phone calls.
I am now on to determining risks and benefits of my treatment options for preventing overgrowth of bone (potentially caused by the surgery). I met with a radiation oncologist this morning. My surgeon and my nephrologist had both said to do radiation and not the less expensive and more standard treatment of Torodol (a non-steroidal anti-inflammatory drug, or NSAID). But radiation still leaves me with something like an 8% chance of the bone growth, plus an increased risk of cancer and, because I have a positive ANA (test for autoimmune disorder, totally non-specific) I have a risk of fibrosis in the hip from radiation. Oh and infertility (no more babies anyway, but the likely hormone disruption does not sit well with me).
Other treatment option is NSAIDs (class of drugs that includes Aleve, Advil, and Motrin to name a few brands), but they pose a risk to my kidneys and I am not sure if they are more effective at preventing the bone growth.
I need to find out- given the stability and severity of my kidney disease (currently very stable and not really very severe) - just how high the risk is of a week of NSAIDs.
And I'm not even sure if I have missed the window for the NSAID treatment because they would have started me on it *before* surgery. So I need to find out what the treatment protocol would even be...and fast!
Lots of phone calls to make - have to let radiation folks know by 8AM, as my treatment is scheduled for tomorrow.
Nothing is ever simple with a chronic illness- especially as a rarity even amidst the rare disease. If I were older, the cancer risk would not be as high, because it increases every decade. And the infertility thing wouldn't be a concern if I were already menopausal. And the autoimmune thing is the entire reason for the fibrosis risk.
Keep on smiling. Keep on keepin' on...
UPDATE: Spoke to my nephrologist while waiting for a call from the surgeon's office. He said a week of NSAIDs is fine and I should do that - especially if it's more effective. I just have to get blood drawn two weeks later. If there is a problem, he said 99% of the time the problem will go away when the NSAIDs are stopped. However, I then talked to my surgeon's PA (she is an angel, which I will get into when I write up the insurance saga) and she said it's a 3-week course. Pretty sure that won't matter, given the "99% of the time the problem will go away when the NSAIDs are stopped" info above. It would be way awesome if this turned out to be the better choice all around.