Drained

Dr. V has no explanation for the fluid return. He thinks it could be possible Dr. S perforated my bowel during surgery, and if that's the case I would need surgery to make repairs. Another surgery!? He orders a CT with barium to check for any "leaks" (his word). 

This is where I fall more deeply in love with Dr. H's office staff. When Dr. H orders a CT, it's scheduled at check out within minutes. When Dr. V orders a CT, I have to call and bark at his office staff to get it scheduled. After multiple calls, over several days, the CT with barium is scheduled for Friday. 

Later, as I'm drinking the blasted barium, I learned the scheduling delay was because the radiologist argued the procedure wouldn't show what Dr. V wanted so he changed it to a CT for better imagery. Yeah. You don't want to tell someone drinking barium the test may not work. Especially someone in my mental state...

Mindset:

What is a word for worse than miserable? My birthday is around the corner. I never make birthday plans, but this year I wanted to do something special. The last two months have been full of hospitals and doctors offices. I desperately needed time for myself. A moment to live. To forget C and celebrate another year lived. 

Now there is a possibility of an additional surgery, which would kill our vacation plans. A vacation that was planned a year ago, months before C re-entered our world. And who cares about me, Fred needs this vacation. He deserves a break from a being caregiver. Good grief. I know that stress. I know that heartbreak. And it kills me that I can't do anything make it better. He has given of himself so much, and I haven't been able to do anything in return. But I can make sure he has a fun & relaxing vacation. Please, sweet Jesus, let me give him this one thing!

The number of tears I have shed during this infection are innumerable. Its winning on so many levels and I hate it! I mean, loosing my hair and identity was a low point...but I still had a life. This is not a life. 

---

The Monday following the CT. We arrive at Dr. V's office for the regularly schedule supply pick. And wait...

"Oh, can you guys come back later today? Dr. V wants to meet with you and go over the CT results."

Dude. I'm pretty sure it's a miracle Fred didn't jump the woman. Sure lady. We don't have jobs like you. He explains to the woman that he has taken off work in order to be there, and now she's asking him to take more time. She looked at him as though he was speaking Mandarin. Consideration of others time, what is that?! And now I officially HATE this office.

We return. And wait all over again. Finally some good news. (Good news usually gets an exclamation point, but I'm so drained at this point my cheer is broken.) The fluid is clearing three more weeks of antibiotic, and if the drain is clear it can be pulled this week. He orders a CT for the week of Thanksgiving to check progress. And it's that fast. From scaring me with surgery to all is well. The C roller coaster is super fun guys!

Another Day, Another Drain

Three weeks pass. I'm feeling better, and am able to get out and drive myself for the first time since the liver surgery. Dr. V orders a CT to check the fluid has/is clear. The results are not good. The fluid has returned, and needs to be drained. An additional two weeks of IV antibiotics. 

Just as I start to feel better, this infection knocks me back down. And sure enough by the weekend I'm feeling the pain again. 

By this point I'm an old friend with all the nurses at the outpatient center, I walk in and one of the nurses sees me and gives me a hug. (50 points!) Today my nurse is Cletus (Janice...she has lots of names). 

Cletus was with me when the first drain was placed, so she knows how much pain I went through. And the same doctor for the procedure, so based on the previous pain he picks a different route for the catheter. No under boob this time! 

It is much easier going in blind not knowing the pain you're about to experience. Once you know, nerves and anxiety take over. Cletus held my hand the entire procedure, and anytime I started to squeeze her hand she pushed a little more sedative. Thankfully going through my back was much less painful than the under boob. Shocking, I know. 

The drain is left in place, and I get to go home with a bag wrapped around my leg. It's painful to move, but I can walk upright vs hunched over with the under boob drain. Small blessings. But the drain makes me miserable. I feel good, but it's too painful to get out and live, and I know once it's removed I can live again. 

I spend the next two weeks at home in bed only getting out for our weekly IV supply run. The drain is clear, but week two the abscess fluid returns. Before the drain was place, we had planned a get together with my dad's family. I was desperately hoping the drain would be pulled & I could enjoy that time pain free. But no, the infection wins again. 

Boob Rigged

So you'd think once a drain tube is removed the pain goes away, but this is not the case. The morning after being released from the hospital, I have an appointment with the Russian's office for IV training. Recall the drain tube site was basically my under boob. Right where underwire or elastic of a sports bra hits. You get where I'm going. I was going bra-less. To some no big deal. To others...

Pain. Walking hunched over with my right arm bent to support my boob. The Russian's staff looks at me like I'm a complete idiot. "Girrrrl! Why you walking like that? What's going on wich your boob?" I explain. "Well girl, we gotta rig that mess up. Can't have you walking around like that!" They grab a roll of gauze and get to work. When finished, I have a figure 8 wrapped from boob to neck. And it worked. 

Then they get to the business of teaching me the IV routine. The process itself isn't a problem, but the whole scheduling life around the IV schedule...not so fun. I get my first infusion in his office, and other than leaving a funky taste in my mouth that made me a little nauseous all goes well. 

We return home, and as scheduled I start the second infusion. Nausea is worse. By the time I complete the third infusion, I'm reaching for a barf bags. (By now Fred keeps them strategically placed around the house, I typically don't get much warning when nausea hits.) We call the 24-hour nurse line. She tells me to stop infusions until further notice. 

The next morning Dr. V's office calls. We need to go back to his office and pick up supplies, he wants me to switch back to the first antibiotic I received in the hospital. Recall he switched meds in the hospital, but I only got one infusion in because he forgot to put in the orders. So if he had done his job, we would have known antibiotic #2 makes me sick. Fantastic! 

This is a Thursday. I can't drive myself, and by this point Fred has taken off far too much work, so we make an appointment to pick up the new antibiotic/supplies Monday. We get to his office around 9AM, and wait. And wait. And wait some more. They finally call my name...

"Oh, I'm sorry antibiotic #1 is on back order you'll have to stick with what you have." 

Guys. We about lost it. First, Dr. V's office is not what I would consider a convenient drive. Second, they had since Thursday to figure out the back order situation AND call us. More importantly why did we have to sit for 45 minutes in the waiting room for nothing! They may have rigged my boob, but I'm otherwise thoroughly unimpressed with Dr. V's office. 

Hospital for Days

Weekend hospitalists. Those in the know...KNOW! They don't understand your personal case, and they don't bother, so they give orders to take the most random junk meds that cause more harm than good. 

This time the hospitalist had a genius idea. I was anemic, so he ordered iron pills. Pills. Recall my visit with Dr. H, before all this started, was for an iron infusion. Well, I was stupid and took them knowing exactly what would happen. Stomach cramps, metal mouth, and because everything tastes like metal I loose my appetite. 

After three doses, I refuse to take anymore iron, but my appetite is already dead. And then the hospitalist freaks out because I'm not eating, so genius orders Ensure & sends in the hospital nutritionist. 

Ensure. Not sure if you've ever tried Ensure, I myself have only attempted the "juice" version. They should have named it Liquid Sand. It sucks all the moisture from your mouth and leaves behind a delicious gritty feeling. Lovely, right? Refused that asinine order without batting an eyelash. 

Oh, the poor nutritionist...

Before this tale you need to fully understand my mindset. I was admitted into the semi-ICU. At Gwinnett Medical Duluth, that means a room with windows for a door and a privacy curtain that no one fully closes when they exit. Basically an introvert's version of Hell. The drain tube made it terribly painful to move, so simply getting up and closing the curtain wasn't so simple (especially when attached to an IV pole). Hell I tell you. Visitors walking by looking into your room like you're a caged monkey. Pure Hell. Add in some nutty hospitalist's orders, and now the scene is fully set. 

I was not wearing my wig, so even if she hadn't reviewed my chart, it's pretty clear I've been on chemo. She asks why I'm not eating. Because everything tastes like metal. Because doc ordered iron pills that my personal doc wouldn't even think to prescribe. Oh boy, I gave her some attitude. She asks if I've lost weight recently. I'm not sure how I didn't bust out laughing, but I do turn and give Fred the "bitch lost her damn mind" look. (Sorry. That's what it's called. And you know that look because you have one yourself!) Eventually she leaves, probably thinking I'm pretty much the rudest person. Ever. Grace hit the escape button that day. 

Monday comes. Monday I'm told I'll get out Tuesday. Tuesday I'm told Wednesday. I'm getting frustrated. Stuck in a gerbil cage of a room with zero privacy loosing my mind. Tuesday night the social worker comes in and tells me Dr. H's office told her Friday. TEARS! Fred fills her in on why I'm crying. 

[We later find out the social worker flat out lied, and Dr. H's office never said Friday. In fact, she told them Friday because of paperwork she would need to file.]

Wednesday comes. Dr. H says it's up to the Russian (Dr. V, the infectious disease doctor). The Russian says I'm good to go, but wanted me to try a new antibiotic. One he wanted me to be using for several days, but never put in the order. 

My Aunt comes in for a visit, I get one IV bag in, the drain tube gets removed, and I'm out the door within maybe forty-five minutes. I'm scheduled to visit the Russian's office the next morning to pick up supplies, and learn the IV routine. 

Abscess Treatment Plan:  

IV antibiotic, 3 times/day, every 8 hours for four weeks. 

Meaning no chemo for at least six weeks. Meaning while I had everything perfectly scheduled, and my 12 rounds of chemo & reversal surgery would have been completed by year-end, that perfect schedule just blew up in my face. I wanted so desperately to start 2016 fresh. And more importantly, before our insurance deductible reset. So, after some tears, I edit my thought process:  I'll get my 12 rounds in & start 2016 chemo free!

Recovery

After being released, cancer took a back seat to recovery. And that's why we kept the diagnosis relatively quiet. I didn't have an exact diagnosis or treatment plan, and didn't want to face those questions. It was time to focus on healing. 

Two weeks after surgery I was having terrible back spasms. I had never experienced a back spasm. It was absolute misery! Percocet wasn't strong enough to ease the pain, so I just had to breathe through. Of course this started over the weekend, so we had to wait until Monday to revisit my surgeon's office.

Dr. E removed the staples and sent me off for a CT concerned a pulmonary embolism was causing the back spasms. It wasn't, but by the time I returned to the office 4" of my incision reopened and was bleeding profusely. It couldn't be stitched. The wound had to heal from inside out, so home health turned into wound care. The one positive. The nerves didn't have time to heal, so while it looked awful I felt nothing during bandage changes. 

The hardest part of recovery, and I seem to have this with every surgery, is maintaining an appetite so I can take narcotic pain meds. I learned to set alarms so I didn't miss a dose, because a mere 30 minutes late had me practicing Lamaz. After a month on Percocet, I was able to drop down to Loratab. 

Five weeks post-surgery the scans & biopsies started. Around this time I noticed the upper part of my scar getting tight, and assumed it was part of the healing process. Then a little scab came off with a stitch that didn't dissolve, and I noticed pus on the end. Within hours it was blistered and oozing. 

Enter infection & open wound number two. Back to the surgeon's office to have the infection drained. This wound was a little over 2" long, but it was deep and had to be packed. The nerves had healed, so this one was super painful. I took Percocet before bandage changes, and it barely took the edge off. Thankfully my wound care nurses stepped in, so I was only wet packing the wound for five days. We switched over to magical silver gauze and bandage changes became tearless. 

It took three months for the open wounds to close, and amazingly they both closed at the same time.