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. 

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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. 

The Infection

The day after liver surgery I had a blood clot and right lung collapse. No chest tube. They sent me to ICU, gave me high flow oxygen, and let it "reinflate" itself. This meant when I left the hospital, I still had fluid around the lung. 

Two weeks later I returned for a follow up MRI. The fluid was still there, but Dr. S's thought was it would clear itself naturally. And natural is always better than shoving a catheter into someone's back to drain and risk infection...hahaha. Ha. Infection. Funny story. 

Another two weeks pass, I'm cleared for chemo and knock out round #7. The following week the pain is worse. It's painful to breathe. I cannot hold my breath more than 10 seconds. Just getting to my doctor is a feat. Fatigue is one thing. I can push through the loss of breath...because I can breathe. When you're working with one and one third lung, walk 15 feet without stopping and you're a darn hero!

I had mentioned the pain was a little worse during my pre-chemo chat with Dr. H, but this appointment I complained more and was sent for a chest x-ray. I was also anemic, so while waiting for x-ray results the plan was to get some iron through IV. That didn't happen. The finding was an abscess, and I was immediately admitted to the hospital. 

And then the talking heads got together. Dr. H was generally uncomfortable making decisions about the abscess. (It's another doctors work, they know the area, what they did, blah, blah, blah.) So he calls Dr. S (liver surgeon), who explains only 10% of his patients need draining and he still thinks natural is best. And the infectious disease doctor (Dr. V, aka The Russian) says no temp, no infection. So while I'm still in pain, and after two days of waiting in the hospital, they decide to release me. If I run a temp, I go to the ER. 

Fun fact. It seems every time a doctor throws out a percentage, I am that stupid fun percentage. Hours after I get home I start running a low grade temp. And by that night we're minutes from going to the ER, and then the temp drops. I was taking Loratab with Tylenol and didn't realize it was causing the temp drop. The next morning another fever, so I call Dr. H's office and we're off to the ER. 

I'm admitted around 9:30 AM, and by 2:30 PM we finally get rolling and the abscess is finally drained. Up until this point I thought the abscess was in the lung area, but I find out it's actually located where the liver surgery was performed. Upper liver. Hard to get to..remembering the first biopsy. 

Thankfully they kept me pretty sedated for the drainage, but it was still painful. The catheter was inserted right under my boob, practically going through breast tissue. Yeah, pain! And then I see the syringe of fluid they are pulling. It's not fluid. It's blood tainted white gunk. Like "light chocolate milk" according to one of the nurses. And these are not small syringes that are being used. The doc instructs the nurse to admit me into ICU. 

Five gigantic syringes later, I'm moved to my side, and they start to drain the fluid in my lung. There was a problem with the catheter so they only remove 100cc, but it's all clear. Basically the abscess was causing the fluid build up in my lung, it was unrelated to the lung collapse, and would naturally clear now that it had been removed. 

The drain tube is left inside. It's about 2 feet of tubing that is shoved under my boob & ribs. This thing is painful. I learn as long as I don't move the pain isn't bad. Bathroom visits required a shot of morphine to manage to pain of moving. 

Dr. H stops by for a visit during his evening rounds. He's shocked that I was walking around with all that gunk, and not really complaining when I had every right to complain. "Oh, here's Heather with a football of abscess fluid...it kinda hurts here Dr. H." Before he leaves we ask when I'd be released, he said Monday. 

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.