Stage 1 adenocarcinoma resulting in a lobectomy

[BryJ]

This is the outcome of my diagnosis and surgery that I talked a bit about in my newcomer's post. Oddly enough, the right thoracoscopic lower lobectomy and mediastinal lymphadenectomy was the easy part...

I had surgery on Monday and was released from the hospital on Tuesday. There was some confusion prior to my release Tuesday morning regarding my chest tube because it bubbled like crazy every time I coughed. After five nurses looked at it, a sixth nurse came in with a student and rather arbitrarily pulled the tube and stitched me up. Shortly after this happened, however, the thoracic surgeon's physician's assistant came in the room and was somewhat upset that the chest tube was already out.

Now, one of the odd things I noticed immediately after they pulled the chest tube was that every time I coughed (or even cleared my throat) a huge bubble--probably a good six- or eight-inches across--would appear under the skin over my upper incision site and then it would seep back to wherever it came from. This was kind of weird. The nurse I told about this (same one who pulled my chest tube) didn't think it was anything special, so away I go home, alternately inflating/deflating depending on how hard I was pushing air out of my chest.

Tuesday evening at home wasn't bad--I learned to brace myself in an old wing-backed chair we have to try and splint where the bubble popped up every time I coughed, which kind of helped, and I started developing an awesome case of crepitus in my upper right chest and the right side of my neck. So crunchy... and my voice got really weird. This continued through Wednesday, to the point where I called the surgeon's office Wednesday afternoon and again complained about the air bubble and asked about the crepitus. The physician's assistant I talked to told me this was a normal outcome of the surgery and I should only worry if I started having trouble breathing or difficulty swallowing.

Okay, I just had part of my lung removed, of course I'm having trouble breathing. That was not a useful diagnostic tool, thank you.

I could still swallow okay, and what trouble I was having I attributed to dry mouth conditions caused by oxycodone, which I was still taking at that point. So Wednesday passed in a wheezy, crunchy and still inflatey/deflatey way.

However, when I woke up at 2 a.m. Thursday morning things felt weird. My heart was jumping around in my chest--it felt like I'd had a couple Black Tiger milkshakes and two double-chocolate donuts from the way things were leaping around in there. I kept trying to go back to sleep and it kept waking me up and I just chalked it up to another strange drug interaction, probably with the oxy. This kept going until 6 a.m when I thought that I'd run an ECG on my Apple Watch and see what happens. 

Heart rate: 131 beats per minute, possible atrial fibrillation, "you should talk to your doctor soon."

Huh? My normal resting heart rate is around 52-55, so 131 is a bit high for me. I check through all the after-visit summary documents they gave me and the only warning signs they have are:

• Fever higher than 101 degrees F
• Redness, increasing pain or swelling around your wound
• Cloudy or bad-smelling liquid oozing from your wound
• Sudden or severe shortness of breath

Nothing about high heart rate. Hmm. 

Like an idiot, I wait another HOUR before mentioning to my wife, "Hey, my heart rate's pretty much tripled since yesterday..." (Keep in mind that my wife has two broken arms due to slipping on a curb while I was in surgery, so she's already got her own stuff going on. And here I'm just adding to the pile with my silly heart thing...)

So she and my daughter throw me in the car and zip me off to the local hospital's ER, where I discover the great word PNEUMOTHORAX: "A pneumothorax is a collection of air outside the lung but within the pleural cavity. It occurs when air accumulates between the parietal and visceral pleurae inside the chest. The air accumulation can apply pressure on the lung and make it collapse."

It can also put pressure on the heart and cause it to get angry (so to speak), and one of the ways the heart expresses this irritation is by speeding up. Yay. This is NOT covered in any of the recovery documentation.

So there I am in the ER and they're trying to figure out what to do with me. They'd like to ship me back to Providence, where my surgery took place, but Providence is currently rerouting new patients to other hospitals in the region because they're full. They'd really like to put another chest tube in me, but they need to do it under CT guidance because the recent lobectomy has changed the internal layout of my chest and they don't want to make a mistake--and they can't find anyone at the hospital willing to do it. So I languish in the ER for almost 10 hours before they find a radiologist willing to take a chance on me and they wheel me off to get uncorked.

While I'm talking to the radiologist I find out that I shouldn't be sitting up and talking to ANYONE at this point--apparently a collapsed lung is supposed to be extremely painful? I can't tell--aside from the extremely rapid heart rate, I felt pretty much normal. Go figure.

They run me through the CT a few times, draw target lines on my side, and zowie holy Toledo I do NOT like people sticking big needles into my chest cavity even with lidocaine. Yeah, both the needle biopsy and the new chest tube (even though it was only about the same diameter as the ink cartridge in a ballpoint pen) definitely fall into the category of "No thank you, please don't do that to me while I'm awake" procedures. Yuck.

They wheel me off to a room (hooray!) and the on-staff pulmonologist shows up and hooks me up to an "Atrium Oasis Dry Suction Water Seal Chest Drain" and holy smokes look at all that fluid just gushing out of me. Yeesh. And it's BRIGHT RED. OMG. So they leave me there overnight, X-ray my chest at 5 a.m. and find that while the fluid's drained well it hasn't touched the air in my chest, but the 11 a.m. X-ray shows the air is pretty much gone at this point and my heart is now sitting around 70 bpm and I'm feeling a lot better. Silly me, I think I get to go home now...

Nope. Providence has a bed open, so at 7 p.m. they ambulance me from my local hospital (which is only about three miles from my house) to Providence, a good 40-minutes away. Sigh. My wife can't drive (two broken arms), so this has a significant impact on her because now she's trying to find rides to and fro to visit me.

I end up back on the respiratory ward at Providence and the nurses are getting me ready for a 12-hours fast so I can go get a new chest tube place and I'm, "Hey, they told me that my 11 a.m. X-ray shows the pneumothorax was reduced and that things were looking good", so everyone finally slowed down enough to check the chart notes I came with and I avoided another chest tube. And they let me eat something, which is what I was really after.

And so I sat in a hospital room at Providence and had some really great conversations with the nursing staff all day on Saturday and Sunday and half of Monday before they finally kicked me to the curb. I learned a lot--it turns out that there are patients in the respiratory ward who are not there voluntarily. For example, there was the "this is bullsh**" guy two doors down who threw things, and the gal across the hall from him who had a similar and slightly coarser vocabulary but who didn't throw things. And there was the gal across the hall from me who was suffering from addiction who liked to stand in the hallway and shout "Help me!"

I kept my door closed a lot.

All in all, this was a really odd experience. I'm guessing the pneumothorax put my recovery off by about a week. I would have gone to the ER a lot faster if I'd had a little more information about pneumothorax symptoms. I am really impressed with the staff at Providence and can't believe what the patients put them through--and yet they were without exception really nice and incredibly friendly to idiots like me who, due to boredom, wanted nothing more than to chat at 2 a.m. about dogs and cats and why box squats are great exercises.

The great news out of all this is my follow-up with the thoracic surgeon on Tuesday morning. I am now cancer-free--a 1.9cm tumor was removed, margins are clean, and there was no sign of cancer in any of the lymph nodes they examined. I go in for a baseline CT scan in four months, then scans every six months for two years, then one a year for a while after that. I really can't get over how fortunate I was that this was found so early and how quickly they got it out of me. Wow. 

And my wife has surgery this morning to reattach her left hand to her arm, so things are looking up there as well.

[Karen_L]

@BryJ, is it even possible to respond to your tale? I'm sitting here with my mouth open, thinking of all the stuff we don't know until it happens.

I admire you for speaking up about your chart notes and getting food instead of a chest tube.  And, I can relate to ER regrets. Mine was about a pulmonary embolism. I learned that when they say, "We'd like you to go to the emergency room," it's not a question, it's a directive. Ah well, next time.... 

Glad to hear your wife is getting patched up. 

Glad to hear they got all the cancer. 

It's good to be alive, eh?

K

[Tom Galli]

Stay the course BryJ!

[BridgetO]

Wow, BryJ, that's quite an adventure you've had! Seems like the nurse pulled the tube prematurely. I was sent home the day after my VATS lobectomy with the dreaded chest tube in place, connected to a one way valve and a bag. They said it needed to stay in until air stopped coming out. This took about 10 days. It was kind of a drag but nothing like what you went through. 

I'm glad to hear you're cancer free and I hope you  have no more adventures in leak-land.

[BryJ]

Hey, thanks for all your responses. One of the things I found most valuable about the Lungevity forums are the stories from everyone. After I got my diagnosis and had the surgery date set, I was pretty stressed and had no idea what I was getting into (and Google searches are scary...) The forums here helped put it into perspective. Being able to read everyone's stories about their surgeries and other treatments here did a lot to set expectations for myself. I can't tell you how much I learned from spending hours reading through everyone's posts, but I learned so much from here that just isn't available from anywhere else. 

So, again, thank you all very much.

It seems like something new pops up every week during my recovery from surgery. Week three brought me a baseball-sized seroma (fluid under the skin) at the large incision site under my right arm. I think it's been there since I was in the hospital with the pneumothorax, but the swelling in that region has now gone down enough for it to be noticeable. My wife took one look and said, "Doctor. Now!" Which is the complete opposite of my normal reaction, which is, "Huh. <poke> <poke> That's odd. I'll keep an eye on it for a couple weeks and see if it gets better."

The doctor said the seroma should resolve on its own in four to six weeks. However, they also said it was good I had it checked out because there's a possibility the bulge could have been caused by part of the lung poking out. I had no idea that lung herniation was possible, so that was a hair-raising conversation.

The other thing that's new this week is the nerves in my chest are starting to come back. The dead spots aren't dead any more and boy howdy are they sensitive. This extends from my sternum around to my latissimus dorsi and down my side. Mostly I notice it in the shower and when I do anything that stretches those muscles--like reach down for something in a lower cabinet. The odd consequence of this is it makes it hard to sit upright in a chair for more than half an hour because it takes about that long for all the muscles on my right side to completely cramp up. Reclining on the couch, however, is fine, but I can't do that forever.

The funny thing about my recovery is how little pain there's been. I haven't really needed any pain medication since the first week. Even the pneumothorax episode was relatively mild--I was taking acetaminophen and ibuprofen in the hospital, but even then I never felt I really needed it. Mostly at that point it was just sore muscles from inactivity. 

And the ever-present cough. Good grief. Like everything else they tell me it will go away -- eventually. Problem is I hate waiting.

[Tom Galli]

BryJ

We all hate waiting. I've experienced all the symptoms you describe during my 3 thoracic surgeries and everything but chronic pain resolved. My pain is caused because I had 3 procedures using the same incision site nearby that severed many nerves. Moreover, my last surgery removed 2 ribs. I hope you avoid follow-up surgery; if you do, your current problems should be resolved. 

Stay the course.

Tom