Health Update, strap in for a long one
Someone asked for a health update. I was surprised as I have done my best this year to be transparant as possible then remembered not everyone does the Facebook thing which I understand because if I didn't feel I had to be because of my readers I wouldn't be.
So where we left off was no chemo, yay! I'm going to give info that might seem unnecessary but trust me all of it is necessary. So I've had arthritis for years, not fun I'm on a pain plan it sucks being in the midwest because I swear I didn't have pain like this in Austin because it rarely changed temp as much as it does in the midwest. It got so bad I got referred to a rheumatologist but hadn't had a bad enough flare for them to say okay other than general arthritis, the thought was maybe rheumatoid arthritis. But in December of 2020 I had crazy pain that I thought was just because of the cold snap but it wouldn't go away. The weird thing was I had pain in my achilies tendon and in a toe I'd broken years ago. The pain in my toe got so bad I would have sworn it was broken if I hadn't known there was absolutely no way it had been broken. It was so bad I went to the ER because I just couldn't figure out what to do. The ER doctor gave me 50 mg of prednisone and told me it had to do with my arthritis and to make an appointment with my rheumatologist. So I did.
I was diagnosed with psoriatic arthritis and I was in a flare. They tried two different meds and more prednisone. None of them really worked so I was moved onto Enbrel in February. Enbrel suppresses your immune system because the inflammation is your body fighting off whatever is going on. The enbrel helped. Great....actually not so great.
With the whole cancer diagnosis once I got the no chemo and I'm good, that bucket list we all have mine glowed with hey bitch let's do this. I have always wanted to live overseas and I was going to do whatever it took to make that happen. I was doing really good moneywise by April that I knew I could make it happen. I made a plan when the world opened up-I was thinking July or August I'm doing it. An American passport gets you 90 days in most countries. I was going to start in Greece (it changed to Italy) then go to Spain, and France, then England basically all of 2021 and 2022 then come back to the US.
So when in May my surgeon's nurse calls and goes okay last appointment. This will be checking in then goodbye forever. I was good and not good. As much as I appreciated the whole saving my life thing I was content to never see the guy again. However, I wasn't happy that there had never been a follow up CT of my liver to say 100% everything was good. And now I'm about to go overseas I don't want this hanging over me. I tell the nurse this, all of it. She says okay let me talk to the doctor. He pushes back with all your labs have been good, a CT isn't necessary.
I push back with all my labs were good when these tumors were found. The only reason why they were found was my dumb good/bad luck. I do not want to find myself in an ER in a country where I don't speak the language. He caved. In May a CT was done. He told me everything was fine. Goodbye forever.
The motherfucker lied.
On the CT where the right lobe of my liver used to be was a 4cm by 4cm abscess.
Cut to June 26 and just as I am finished uploading Luca's book everywhere around 2/3am my side starts hurting. Crap, I haven't been drinking enough water. About a week ago I had the same pain but it stopped. I'm sure this will too. I do all the stuff and go to bed but the pain doesn't stop it gets worse. I managed to get about 2 hours of sleep but I'm up my seven am and two 5 mg of oxy aren't cutting it. Fuck, it's kidney stones.
I can't take the pain anymore by 9am and I'm in the ER. I have broken my wrist and didn't cry, I was crying from this pain. I go in, they do the urine test but huh, it's not kidney stones-usually there would be blood in the urine. The dumbass ER PA goes it's not kidney stones.
Me: okay then what is it?
Me: okay so are you going to do a CT to find out?
PA: no, I mean do you know how many CTs you've had?
Me: more than my fair share, but I'm in pain so badly I'm crying you don't know what it is and you're not going to do a CT to find out? You're just going to send me home like this? I give him a look that tells him he is the stupidest man I have ever had the misfortune to encounter. He folds: fine, I'll order a CT
CT comes back and in less than 20 minutes later, the dumbass is back. They saw something but they need more, I have to do a CT with contrast.
Two hours later the dumbass comes in, Dumbass: It's bad. They don't know a hundred percent what it is but we're sending you to the main campus hospital to admit you. It could be cancer, it might need surgery.
I shut down and ask for pain meds because I cannot take this motherfucker for a single second longer. A nurse comes in about five minutes later with an actual doctor. He tells me it's an abscess, it's actually fairly common for them to form in the body but two things are of concern one it's gone from the 4x4 to now 6x6 in less than two months and two why did it take so long to form after the surgery of now almost a year ago. He asks me about the Enbrel. I tell him I started it in February. He tells me without a doubt it's because of the Enbrel. Because of it suppressing my immune system it likely allowed the abcess that had probably been there since the week of my surgery to become infected and the infection to flourish.
I'm in the hospital for a week. I tell the doctors you need to fix this because I'm going to Italy in August. They promise me they'll fix it, I'm pumped full of pain meds and antibiotics and two drains one for my lungs and one for the abscess. They were supposed to do a CT to confirm size of the abcess before pulling the drains they didn't do that. They said everything is good and sent me home on July 3rd.
On July 9th I was in so much pain back to the ER I went. The abscess was now 7x9. They did a manual aspiration (pulling fluid out by syringe) stuck another drain in me and sent me home. I had a PICC line put in so I could get my antibiotics by IV instead of pills. Everyone kept saying it would be absorbed into the body-lol no.
I walked around with a drain inside me until July 29th, it was 2x2 and was told everything was fine have fun in Italy. August 17th I was in an ER where I didn't speak the language. I was kept in the hospital for 6 days, they did another manual aspiration and told me to go back to the surgeon who screwed up in the first place, they weren't going to fix it.
I leave Italy on the 28th.
I meet with my surgeon on Sept 7th. He refuses to do anything. He says it shouldn't have been messed with in the first place. It should have been left alone. What? Yeah he wouldn't have done anything. I tell him politely that is unacceptable. He refers me to a surgeon in KC. That surgeon is willing to do another aspiration and follow up care with me as needed.
Another aspiration has been done no more infection.
For now, there is no pain. But as much as I wish I could say it's all good, it doesn't truly feel like it. I have no idea what's going to happen, I'll just take it as it comes. Sadly, i won't be going overseas anytime soon as I have no desire to end up in a hospital where I don't speak the language so....it's a little sad but I am glad I got to go, Florence was beautiful I highly recommend it.
So there it is. 2021 was better than 2020 but not as good as I hoped it would be. I'm really hoping 2022 has no more hospitals, blood draws, and doctors-fingers crossed.