I had hoped to have a happy, upbeat day. It started out that way -- 8:30 am trip to a near-empty Walmart (amazing!). Then I went to my dad's to steal his Tahoe and gps, only the gps had been moved and I didn't have time to wait... or so I thought. I went to leave his house using my usual route, only they had that road closed for repairs so I had to turn around. I get to the highway, start heading out of town and have to pull over for a bunch of volunteer fire trucks. My dad texted me then, saying he had found the gps.
Okay. I am a believer in signs. Two different obstacles kept me from getting out of town until that dang gps was found, so I turned around and picked it up even though I knew it was gonna cut me close to getting to my appointment on time.
So I'm on my happy, little way... singing and driving. Everything is good. I had a fox run out in front of me. I'm thinking, "Really? I have never seen a fox in the wild and now I have had two encounters with them within just a couple days." No sooner had that thought been thunk that the dang Casey James song starts playing on the radio.
And I lost it.
And when the line "Come on man, be a man" played, I said "fuck you" out loud and pulled myself together. He couldn't step up and be a man, even when I aimed that damn song at him on Facebook. Instead, he chose to be a coward.
Enough about him. Done with that. Done with him.
Anyways, the appointment. I'm still trying to process it. It wasn't bad, but I wouldn't call it good. It left me feeling uneasy. And that's the last thing I need right now.
My doctor came in and sat down beside me. I love love love my hematologist. He calls me at home to check in on me. He remembers details about my personal life, things we've talked about regarding my job and my daughter.
He tells me that he and my oncologist are very close, and they actually met to discuss me and go over everything to try and piece my mystery illness together. They were unfortunately unsuccessful though. But I love that they are trying. He already knew about the biopsy and the complications, had already discussed that whole mess with my oncologist as well.
He again asked what over-the-counter meds I take. Tylenol only.
No fish oil? No omega-3? Nope.
Eat a lot of garlic? No.... (Meanwhile, I'm wondering why is he asking about garlic. Weird.)
Still not a drinker? Nope, still don't drink.
No gin and tonics? I busted out laughing. Nope, never have had a gin and tonic.
What did you eat today so far? Some apple slices, a handful of grapes and cheese cubes.
He said it's definitely not my diet. Ha!
He said my platelets still aren't functioning at the level they are supposed to. My platelets are acting like I am a heart patient on blood thinners. Only, I am not so he was naming off everything that could cause my blood to accidentally thin, but none of that is matching up as a cause. The reason for the weird bruising is the platelet disorder. The reason for my inability to stop bleeding is my platelet disorder. But they have no clue what is causing the platelet disorder.
He says he can tell I am feeling better; I am much more "brighter" than the last appointment. He asked if my energy is up, which it is. He asked if I am still sleeping crazy amounts still, which I am not. He asked if I still have to take naps, which I do sometimes but not like before. He asked if I still tire easily, which I do. He asked if I am still able to work, which I am but by 3pm most days my body is telling me it is done. He asked if the fevers are as frequent, which they are not. But I had one today when they took my temperature during the appointment. He asked if the bruising is still there. It is. It comes and goes. Each time it comes, it's less than the time before. He asked if I still have night sweats, which I do but not as often.
So I still have issues. I am in no way 100%, but he feels I am slowly improving.
He says best case scenario, this started with a weird virus. A mono-like virus that is not mono. He says there are some that do affect platelets. And he could test for them by the 100s, but that doesn't mean they'll get a hit. And even if they do, it'd still be a virus and there's not exactly a lot they can do for it. It would just be something that my body would recover from over time. And they've done all kinds of testing, he doesn't want to keep putting me through all that.
But at the same time, he wants to find out what is wrong with me.
Says sometimes the body takes time to reveal what is going on with it though.
Obviously that is what mine is doing.
Then we get to the weight loss. I was right, he wasn't okay with it. Quite the opposite.
He says two things could be causing it. One -- my body has stopped absorbing nutrients for some unknown reason. Best case scenario. Ooooor two -- there is a tumor hidden in my body somewhere that is stealing from my body the nutrients I am taking in. That they are feeding the tumor instead of my body. He is really worried that it is the second one, especially given the fevers and lack of energy and night sweats.
Back to the damn cancer talk. Blah.
So... the next 6 weeks, I am to monitor everything -- energy, fevers, especially my weight. If I lose more than a pound or two, he is doing a whole-body PET scan on me.
Okay. Shit just got serious.
Nothing has shown up on any of the cat scans -- not the enlarged lymph nodes, not the tumor that was biopsied, not the tumor in my uterus. So cat scans are a joke apparently. He says a PET scan will show it all, plus anything more that may be hiding. And it would give a closer look at the tumor in my uterus that DCH says is non-cancerous by the looks of it.
And DCH was also who said the mass I got biopsied was a lymph node.
Only it wasn't.
It was a damn tumor.
So I don't really trust their readings. Not that I did, just kinda have no other choice but to use them.
Only, the PET scan will be done in Indy and read by them. He's not messing around with a misdiagnosis on this.
That's where the issue lies. DCH and their insurance. I may be looking at paying for this thing completely out of pocket. One, because it's not being done at DCH. And two, because it's not exactly medically necessary. It's a diagnostic PET scan, ordered to hopefully diagnose me.
Or rather, not diagnose me.
Because if I get a diagnosis from this scan, it'd be one of cancer.
What if he's freaking right? Ugh... I thought I was over the worry of cancer again and back to the weird blood disorder thing.
I am to keep my appointment with my oncologist next month. He checked the lymph node in my collar bone, and it's still hanging in there... all enlarged and stuff. The possibility of biopsy on that still exists. He's gonna discuss that with my oncologist and let him recheck it himself at that appointment.
I don't know. I was expecting labs... not the possibility of a secret tumor somewhere inside me. The drive home was not nearly as upbeat as the one up there. Silence and a whole lot of thinking. Worrying.
I think I need to listen to my "theme song" a couple hundred times to get my head straight once again.