Dearest Liver,
Why is that that the good news always comes with the bad? My tumor markers are even lower than they were at my last post (163!) BUT my jaw is a mess.
When I was first diagnosed with metastatic cancer my bones were the biggest issue. I was put on a shot called xgeva to strengthen my bones and help kill my bone mets, but was told to go to the dentist and watch out for osteonecrosis of the jaw. Don’t google it unless you want to be traumatized by the pictures for life, but it basically causes your jaw bones to die and to look like you’re an extra from the Walking Dead. Instead, I like to call it zombie jaw.
Six months ago when I started having jaw pain, my docs took me off xgeva and scanned the hell out of my jaw trying to see what was wrong with it. Of course we didn’t find anything that proved that I had zombie jaw, but after some coaxing on my end they treated me with antibiotics and the pain went away. A few chemo treatments ago I started having jaw pain with every post shot of neupogen. We’ve been going back and forth trying to figure out how to manage the pain while I have been fighting with my insurance company trying to get them to cover me seeing the special oral surgeon. (You know it’s bad when I’m electing to see another doctor.)
Then last night, as the pain in my face was becoming something I couldn’t tolerate anymore, I went into the bathroom and looked in the mirror. I saw this tiny spot of what looked like bone sticking out in the middle of my gums! I started freaking out, and cursing myself for not looking earlier while my dad was still awake, and emailed my doctor.
Side note: I have to say, I LOVE my oncologist! She is so smart and busy with research and travel/speaking, yet somehow every single time I have a freakout she answers my emails right away. I emailed her at midnight or so and within maybe 5-10 min my phone dinged with a new email and it was doc responding to me. I don’t know if I time my meltdowns well or she’s always attached to her email, but either way, Dr. Rugo, you are my hero! Always coming through with the middle of the night emails that calm me down.
Then I had the extreme pleasure of seeing 4 dentists this morning who all x-rayed and examined me and never gave me a solid diagnosis. Long story short, yes, there is in fact a hole in my gum, dear liver… And yes, I’m 99% sure even though the oral surgeon won’t say it, I DO have zombie jaw. So please excuse me if I have a weird craving for brains and please know that even though I’m blaming this one on the bone mets, and not you, I’m still pissed off.
Love and kisses,
Robin