I just sent this long missive as an email to coworkers, friends, and family. A few of you have asked me to keep you updated, so I’m editing it for privacy and posting it here.I hope to get back to the Sims this weekend. Today and tomorrow I’m working extra hours to make up for what I missed earlier in the week. The joys of not earning sick leave! If you’re only here for the Round Robin Legacy Updates, just stopping reading here, and know that I’ll get them up as soon as I can. Perhaps next week, sometime.
Happy Feast of Our Lady of Loreto!
My surgery of the 8th was deferred. Not canceled, per se, just...didn't happen.
I arrived at the hospital at six in the morning, checked in, gave a urine sample, got into my fancy gown and socks, got my IVs, gave a blood sample which was sent to the lab, had a pregnancy test (negative, which is a heartbreak story for another time), had a dose of pre-op versed, and then waited.
With a parathyroidectomy, the surgeon removes the parathyroid that's already been determined to be abnormal by previous tests. (Mine's the lower right, according to my endocrinologist.) After removing one gland, the surgeon tests the parathyroid hormone levels in the body. If the other parathyroids are normal, the levels will almost instantly shoot into the normal range. If not, the surgeon will find and test the other glands and remove another abnormal one. That's why it's an exploratory surgery. Each gland is somewhere between size of a grain of rice and a pencil eraser, depending on how engorged it is, and each is mashed in with all the other neck tissues and glands (and spine and throat and...). So, not a surgery for fun and games, either.
At nine, my surgeon came into the room. All the levels that have been too high since April were within the normal range. Still at the upper range, but normal nonetheless. My surgeon couldn't operate because he had no measure of when to stop removing glands. He checked with my endocrinologist, and she agrees. For now, we will check my levels every two weeks and see what happens.
I'm not better. With hyperparathyroidism and the hypercalcemia it has caused, it isn't a matter of "normal levels=normal ElfPuddle". It isn't the height of the levels that determines health, as much as a matter of how long they've been higher than they should be. But if they aren't higher than the normal range at the time of surgery, we've no measure for removing them.
More than one person has said that we should be grateful for the deferment. Who knows but that something could have gone horribly wrong, and skipping surgery saved my life. I believe that. We say we walk by Faith, and not by Sight. I have no idea why this is all happening the way it is, but I know I don't have to have the ideas. It isn't my plan or my timing.
My team of doctors has said from the beginning that everything about this seems abnormal. It's not usual for hyperparathyroidism that my levels would jump so high so quickly, or that the pain would go from 0 to 11 overnight (which sounds like an exaggeration, but is literally how this started last Spring). They have thought that there is something in addition to the parathyroids that is going wrong, and we just can't place what it is. We've been concentrating on those little glands as a first course of action, looking to determine the rest after the glands are fixed. God only knows what it is that's really wrong with me. Perhaps this deferment is giving us a chance to figure it out. Or perhaps not. Perhaps it's yet another auto-immune disorder to add to the list I already knew I had. Perhaps not. Again, I don't know.
HubbyTMC and I are tired of my illness, and frustrated by the lack of answers, yes. So, we give it up to God. We've been praying to St. Roch (disease of unknown/mysterious origin and arthritis), St. Servatius (foot pain), and St. Blaise (the throat, and so everything going on in my neck). We've also been praying the Rosary, because obviously Our Lady knows what's going on and, even more, knows what it's like to suffer. We will continue to do so, and continue to hang on to each other, our Faith, and all of you, for as long as we need to.
This is a rather long and rambling missive, and I apologize for that. Thank you for your love, your notes, your prayers, the Masses...for everything. More than anything else, this illness has brought me to my knees (metaphorically) not by the pain and frustration, which are both extreme, but by being humbled and forced to ask others for help. I've never been any good at that, and I'm so very grateful that you've all stepped up and offered even before I asked. Thank you. For everything.
I'll continue to keep you updated as we wait and learn.
And I'll keep you in my prayers, in thanksgiving for your love and friendship.
Love,
Elfie
