“In spite of illness, in spite even of the archenemy sorry, one can remain alive long past the usual date of disintegration if one is unafraid of change, insatiable in intellectual curiosity, interested in big things, and happy in small ways.”
I know, I know. I’ve been gone for awhile…and its not about to be over but I wanted to keep y’all up to date on the going ons around here.
So lets see… my new doctors here in DC decided that in order to proceed we needed to re-evaluate where I am pancreatic-ly (shut up, I’m taking some liberties here!). So we did an Endoscopic Ultrasound (EUS) last week to find out if I’ve developed Chronic Pancreatitis. The thinking was that I have had five (5!) ERCP‘s. Each time developing acute pancreatitis. Each ERCP and each episode of acute pancreatitis put me at risk for developing CHRONIC pancreatitis. I know it’s confusing. But on my MRI’s they had seen some pancreatic changes and were concerned. So that’s fine, it was mild sedation and a nice nap. But they didn’t find any significant changes. This is good.
They found my common bile duct is almost completely occluded. This is bad. Very bad. My pancreatic duct has been completely occluded for about four years now. No one wanted to clear it out because they were unsure of where it came from. And very afraid that messing with the occlusion could cause other things to go bad. And luckily I have a secondary pancreatic duct that helps re-route things. That’s why I’ve needed all these ERCP’s because my secondary duct is significantly smaller because well it was never meant to be the primary pancreatic duct. That’s why its not called that, duh! But any who, it will get sludged up and part of my illness causes my ducts to develop strictures (meaning they cramp down) so then things don’t flow great. So ERCP is done to basically clear out the ducts and place stents to prop them back open.
Well, the problem is that the common bile duct is the big duct that everything flows through. This cannot become occluded. That would be very bad. Very, very bad. And this is very, very serious. Because they have no idea why my ducts are doing this, how to keep it from happening and the concern is that with each ERCP my complications get worse and worse. So right now, I’m scheduled for my next ERCP on Wednesday the 15th of July.
It was very bizarre after that EUS because the doctors were so alarmed about what they found they called my doctor while I was still under sedation. So one of his staff doctors was waiting for me when I came out of anesthesia. He told me what they found and that my Doctor would be calling me the next day to schedule a surgery date. AND to make it even more nerve wrecking for me, when they called, they had already scheduled my surgery! They didn’t even give me much chance to procrastinate. I know it’s in my best interest to get this whole thing over but my anxiety has just shot through the roof!
And I’m driving Husband crazy because when I get anxious, I organize. I organize and talk too much. I’m not looking forward to this at all. I’m not looking forward to more IV’s, crazy pain and the pain medications needed to help control them. I hate the blood draws. I hate the succession of medical personnel who have to all come in and talk to me about my pain and press on my stomach. As if my pain wasn’t bad enough, lets all smush my liver and pancreas down to make it worse. First the medical student, then the intern, then the resident, then the fellow and finally my doctor. And to be completely honest, I am really freaked out. And poor Husband. He is beyond freaked but as usual he pretends it is all fine. I know he thinks he needs to be strong for me and that is why I love that man. But he’s so good too me. He’s been hinting that maybe I should buy some new audio-books, that way he doesn’t have to read to me! I’m going to do that but it’s always so comforting to have him read to me anyways.
So we are just pressing on. I’m packing my bag. Gathering all my hospital clothes. My tank tops, my comfortable pants, all my colorful socks so I can stay clothed, decent and out of those horrible hospital gowns. Oh and my beautiful cardigans. Those are important so I can stay me, stay comfortable and warm but hospital appropriate. I’ve gone through my millions of movies and picked out the ones I’ve been meaning to watch and added them to my perennial favorites. I’ve also added a few for Husband to watch because we all know that I really don’t watch anything because I’m so drugged. And a couple for my mom who will be coming up from North Carolina on Tuesday.
I’ve also dealt with the unpleasant details of all of this. I’ve updated my advance directives and living will. Which is something everyone should have no matter their health status. It really is the only way to ensure your wishes are carried out. Luckily, my family and Husband all feel the same way about this. Organ donation always. And Husband and I both have included in our living wills that we do not want extraordinary measures taken. Our medical backgrounds I think helped us with this decision. We both have agreed that while it would be hard to say goodbye, prolonged life-support is only benefiting the family and I believe that when it’s my time, it’s my time. Obviously, if there is a chance of a good outcome then this wouldn’t be the case. Death is never easy to deal with but we both know and have come to terms with that my illness most likely will become terminal at one point. Either from cancer or complications from a surgery. But I think because of this we appreciate each other a little more. We embrace the time we have. I mean seriously, its entirely possible I could live another 50 years! But if I don’t, I do not want to have any regrets. I am daily grateful for having such a wonderful husband and family and know that my life is good. I have to admit, it is a little humbling and more than a little hard thinking about these types of things at our age. Very against nature. But we have each other and hopefully one day, children. And we can’t forget Amelia! OK, I’m done being Debbie Downer.
But enough of the sad stuff. Husband has the day off on Wednesday but has to go back to work the next day and has to go to Asia for secret squirrel duty later in the week. He can call off work during the week but because of visa issues he cannot cancel the Asia trip. Visa’s are a pain in the ass and require the paperwork completed months in advance, so no one else can fill in for him at this point. Mom (mine) will be here to babysit me while Husband is at work. She’ll be staying at my Aunt Joni’s and Husband will drop me off each morning before he goes to work, like a daycare for the incredibly grumpy, fussy and non-compliant. Because Husband is very afraid to leave me home by myself. Not so much because he is afraid I’ll keel over or anything but more for the simple fact that most likely I will need to go to the ER. Normally, I get to go home after my procedure. I’m not in terrible pain afterward, more than normal but they send me home with more pain meds, and I’m not feeling too terrible. But around day two as my pancreatitis starts to kick in, I get MISERABLE. I can’t sleep, I can’t eat, I don’t want to eat, I can barely stand up, I’m normally beyond nauseous and even sometimes throwing up. And so I end up back in the ER for my pain and then admitted because of my pancreatitis. So husband was nervous about leaving me at home by myself just because he didn’t want me to be miserable at home, waiting for him to come home so I can go to the ER. And also because I’m notorious for trying to avoid the ER like the plague. I’m always the last one to admit that I need to go and normally am sulky the whole way there. Its not that the ER isn’t a pleasant experience….well it’s actually not. But I have horrible veins from years and years of procedures, so it takes multiple IV attempts, normally ending up in some sort of semi-permanent catheter placed like a PICC line or a central line. Which are no fun at all. Then the drugs. All the drugs. They are a neccessary evil. And then the IV fluid. And then because of all my medications, IV fluids, multiple IV sticks, I end up looking puffy, bruised and all around like I’ve been a round or two in the ring.
So, another surgery on Wednesday. I probably won’t be blogging during that time, but I might. But I probably will be on Twitter @RunAmokAmok. Those who know and love me can text me. And emails are always welcome, RunAmokAmok at gmail dot com. I will have my computer with me and the hospital does have free wi-fi. I will write y’all back but you’ll have to excuse the typos because let me tell you, talking is difficult on all those drugs, let alone typing. Husband might log on for me to keep you up to date but most likely it will be Liz, my BFF who logs in to keep y’all up to date. (BTW, y’all should totally check out her kick ass blog, The Wit Factory. She is just totally effing hilarious)
And while I’m in the hospital, flowers are always welcome! I love all things purple. 😉 And I love those fruit bouquets by Edible Arrangements, seriously, the more pineapple and strawberries and CHOCOLATE covered strawberries, the better! I also like Sour Patch Kids. The sourness helps with the nausea so it does a double duty. And I love visitors! And I’m sure Husband would love someone else to show up and read to me so he doesn’t have to read yet another Nora Roberts sex scene. (Everytime he asks how we ladies can read these romance novels without getting…um….aroused all the time. I tell him we do, its just easier for us to hide 😉 ) So if you’re so inclined and in the area, send me an email and we’ll let you know where I am.
But otherwise I will be busy trying not to throw up, watching movies in between my narcotic induced blackouts, complaining about my 15th IV stick, begging Husband to rub my feet/put lotion on my legs/and or help me please brush my teeth, wash my hair and look less like death warmed over. Pleasant, no? Well my dears…. seriously. I could really use the distractions. Email me. Email me frequently. Text me. Text me frequently. Twitter me! Wish me luck. Pray for me. Pray for Husband to maintain his patience while dealing with me. Because really, we all know I’m a complete pain in the ass on a good day. He could totally use a break too so like I said, visitors bearing good food for him will never be turned away.
Love y’all. It will be ok.