Wow, literally, what the h@#$ happened? Not to be a whiner, but whew, I am one worn out chic. Veins blown, 35 pounds down, my nail polish is chipped and I can't reach my toe nails to fix it (ok so maybe NOT my biggest problem ;) ). As you remember, on December 4th, I went to the Rex ER due to severe abdominal pain which resulted in that evil drain. Well the saga continues. 

Around mid January, I started to have that awful drain pain AGAIN! Seriously, the drain that just will NOT leave me alone!!! I was soooooo upset, angry, worried. I thought maybe it was trauma from such an awful and haphazard procedure, scar tissue, my muscle trying to heal but being unable to due to, nerve damage, sciatica...I googled and tried to think of anything it could possibly be. Finally on January 21st I threw in the towel and went back to the surgeon that put the drain in and told him something was wrong. He sent me for a ct scan. Insurance denied the ct scan. He then sent me to the emergency room and said they couldn't deny me there. NOT where I like hanging out these days, flu season, but what choice did I have. 

At the ER the drain team came in with the ct results. They said I had tumors growing inside my canal where the drain had been placed. What? They said that for now, their goal was to keep me pain free and comfortable, until Dr Soper could consult his team and decide what could be done for me. They did not disappoint! I was on cloud 763 my entire time there (which was only one evening). Since Soper does not work out of Rex anymore, I needed to be transported to Chapel Hill. To my delight, via ambulance! During which, they injected me with 2 more doses of pain meds. So far so good. Everyone is on board with keeping me pain free and comfortable. 

I get to Chapel Hill and get wheeled all the way up to a waiting room, talk about service! The nurse and I had a little come to Jesus meeting about why I was there, pain management, as she offered me tylenol or advil, ummm, no. So after we got that settled, and I got back on my pain meds, I got comfy with my cable tv and adjustable bed. I'm 100 % over pain. OVER IT! 

At this point, I hadn't eaten in several days due to the extreme pain. Now that they were keeping me pretty comfortable, I was starving. Pending scans, possible surgery, etc I was not allowed to eat. Sigh. After several scans, x rays,  lots of blood work, I needed a blood transfusion to prepare me for possible surgery. Next the team had a meeting and decided I needed the super risky bowel exploration surgery. I was told 22 months ago upon diagnosis, that I was not and would never be, a candidate for surgery. That surgery would be a last ditch effort, with the odds against me. So I knew this was bad. I told Dr Soper, I trusted him,  he does his part, i'll do mine, and we can get through this. He planned on doing an exploration, possibly a bowel resection, possibly an ostomy, possibly close me back up with nothing done. We would just have to wait and see what he encountered. While prepping me for surgery with blood transfusions and fluids, my drain pain increased. It almost felt like I was in labor. It kept getting worse and worse, and fast. I couldn't get comfortable, sitting up, laying down, the pain was just unbearable. I fantasized about about slicing the tires of the original drain team. Then...it burst. Literally. Drain site burst open. I will save you the gory details, but let's just say there were about 8 nurses by my bedside in about 10 seconds trying to control this monstrosity. Dr Soper was hoping to tackle this drain issue during surgery, but plans change! Turns out, it was not a tumor growing inside the drain site, but infectious fluid following the line, from the abcess. Good news? I wasn't really sure. Next up was surgery.

When I woke up, I was pretty comfortable, anesthesia will do that to ya! After all the happy juice wore off I was ready to face the news of what they found out during surgery. So there was a tumor "wrestling" with my bowel. This had gone undetected on all the scans. He removed that. Then he resectioned my bowel by using a healthy piece of tissue. Resulting in an ostomy =( So basically my abdomen feels like it is on fire 24 hours a day. It IS getting better every day, but it is a S L O W process. Getting up to pee was BRUTAL 7 days ago, and now it's almost painless, so i'm definitely making progress. I just get impatient. You don't realize what you use your abdominal muscles for until they have been sliced up and rearranged. It hurts to talk, hurts to crochet, hurts to reach, bending over sends me to the moon, literally anything you use your core to do. Pressing the buttons on the tv remote hurt! 

After surgery, I was told my bowels would "wake up" in a few days and when that happened, I could EAT! I was starving! Of course, my bowels did not cooperate and after almost 2 weeks without food, I started to really lose it. I was weak, tired, uncomfortable, lethargic, just felt awful. I was just about to send Cylee to a vending machine and sneak some food when...I started throwing up green stuff. Sigh. Not exactly the boost I needed. Since my bowels weren't working, the bile was building up in my stomach. I threw up so much that they couldn't empty and return the buckets fast enough. It was so bad. Just when you think it's at its worst, another hit comes. Now they wanted to put in a NG tube. They tried doing it on one side and it was super painful and caused a bloody nose. So they needed to try the other side. Apparently, I was just over the pain, because I passed out, and don't remember a thing. When I came to, I was super uncomfortable. I was told I could not drink anything, not even water. Couldn't even have ice. Ok, so this was my lowest low. I was literally starving, thirsty, desperate for something to drink. My throat hurt, constantly being irritated by this dam tube that was sucking green crap out of my belly. I definitely was not in a happy place. 100% the most down and out I have ever ever been. I'm of course, in a much better place right now, but it is still very very fresh, very very real, and emotional healing takes just as much work and time as physical healing. I think they realized how down and out I felt, and they decided to put me on a PICC line/feeding tube with liquid nutrition. 

The next few days were spent IMpatiently waiting for any sign of bowel activity. I started to feel a little more alive with the liquid nutrition. I started to really annoy people with how thirsty I was and got one nurse to bring me some super small ice chips that I was allowed to crunch on. Finally, after almost 2 weeks, we had some noise, then some output, which showed my bowel was working. My next test was to clamp the NG tube. If I could go 24 hours without throwing up, they would remove it. I passed! Dr Soper came in and removed the tube, but stillllll didn't want me to eat. OMG people, i'm literally dreaming about food!!! Nurses walk in my room and I imagine their heads as cheeseburgers! 

Finally I was allowed back on a clear liquid diet, I didn't complain! I ordered an italian ice and a cold tea. After a few days on a liquid diet, I was allowed a regular diet, but was told to keep it simple and not overdo. Which I am still doing. 

I was finally discharged after 16 very very long days. Currently I have a home health nurse coming every other day due to the fact that I am connected to a wound vac machine which is helping to heal the notorious drain site. I have to go to Dr Rauch twice a week for bloodwork and magnesium/fluid infusions. I have a ct scan set for March 6th to check on my progress. Chemo is currently off the table until I am stronger and the wound vac is not necessary. They think about another month. This of course, makes me nervous, as I don't want it to get out of control, but....one thing at a time, is really all I can handle. Even that is a bit overwhelming. 

So in a nutshell, that's what has been up. I have definitely been struggling, have had to be selfish and concentrate just on me (which is hard for me, but necessary). I'm living in my recliner, since laying down straight does not make my belly happy. I use a cane to walk short distances, cannot walk long distances. I only go downstairs if I have to leave the house. Dave is in charge of making sure I eat, but I do have a stash of protein shakes and snacks in my nightstand. Rudy is keeping me company, but doesn't understand why mommy can't just run downstairs and let him out to pee. 

I so appreciate all the texts, messages, emails, cards, prayers and well wishes. I apologize for not being able to respond for so long. There were several days I didn't even know where my phone was. I am finally on the upswing, it will be slow, and uncomfortable, but I think i'm finally headed in the right direction.