During my last surgery I was feeling better than usual, so I wrote up a detailed description of what is involved in getting a thoracotomy, and the following 2.5 weeks. It's blunt and to the point, but I am not going to rewrite it. I am sure this information will be helpful to someone. Depending on the feedback, we can also place it on the front page of the website.
Enjoy, if you can enjoy such stuff
Edit: MOST up-to-date version is found below: http://cureasps.org/forum/viewtopic.php ... =333#p1319
Thoracotomy - day by day description
Thoracotomy - day by day description
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Re: Thoracotomy - day by day description
I have an update coming. Some time has passed, so I can correct some things. I also had another surgery, so I also have some new information to share.
Re: Thoracotomy - day by day description
Hello Ivan
Wow a lot of work went ino this and thank you for posting this!
The unknown is one of the worst parts of this ASPS diagnosis and this helped me a lot with my fears of the next CT.
I hope that Arch wlll read this and tell her husband who will be going to this doctor in a few days also.
You may want to e mail this to her
The guy the first day that is with you pre surgery made me laugh, lol What a great idea for them to have him there for paitents!
*Healing hopes for us all*
Amanda R
Wow a lot of work went ino this and thank you for posting this!
The unknown is one of the worst parts of this ASPS diagnosis and this helped me a lot with my fears of the next CT.
I hope that Arch wlll read this and tell her husband who will be going to this doctor in a few days also.
You may want to e mail this to her
The guy the first day that is with you pre surgery made me laugh, lol What a great idea for them to have him there for paitents!
*Healing hopes for us all*
Amanda R
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Thoracotomy - day by day description
Thoracotomy - a day by day description
This is a description of what a patient goes through during a thoracotomy – an open lung surgery.
Day 0 (Tue) – preparations and tests
a. There are all sorts of blood work and other tests you may expect.
b. They shave your upper body of all hair on the side of the surgery. I highly recommend bringing your own razor and shaving cream and doing it yourself to a large extent. Tom let them do it and he got lots of small skin cuts, and so did I last time.
c. I do the EKG on the bike – they keep increasing the load every 3 minutes by 30W until you can’t handle it anymore. This tests your lungs and heart operation. I top out at 270W. The sensors don’t allow me to get up from the seat while biking. I am sure I could pull another 30W if I could. I’ll try it on my own later when I’m recovered. The anesthesiologist said he could do 320W, so now I feel challenged. I am sure that on a long distance he would kill me on the bike, but for 3 minutes there is no reason I should not be able to beat him
d. You can eat whatever you want up until the lunch time, but nothing except a very thin soup at 5 pm after that. This is to make sure your stomach is empty for the surgery. You may drink as you wish.
e. I went for a 25 minute run in the evening. Very short, so I am in no way tired, just warmed up a little bit.
f. You get a a sleeping pill in the evening. I think it’s particularly effective against me, since I never take any of that stuff.
Day 1 (Wed) – day of the surgery
a. The nurse woke me up at 5:30 am. I think they then gave me another pill to keep me relaxed. It’s not like I was anxious anyway.
b. I wear the gown and surgical tights (no underwear). They take me on the bed to the preparation room.
c. There’s a guy here whose sole function is to talk to me and to entertain me.
d. The anesthesiologist comes in from behind to insert the epidural into the spine. All other catheters and IVs will be inserted when I am already asleep, but for the epidural you must be awake to make sure nothing goes wrong.
e. I sit on the edge of the bed with my back bent slightly forward and relaxed, head bowed forward to the chest. The doctor uses a needle to insert the epidural catheter into the upper region of the spine (do not let your imagination play tricks on you – it’s not as bad as it sounds). I remain dead still and silent during the procedure. Of course, I feel the pain and discomfort, but I am much more concerned about the doctor getting it in successfully, so I let him do his work in peace. A well-placed epidural is the best painkiller of all.
f. The guy who’s there to talk to me is apparently amazed at how I take it. He says some people yell and scream for the doctor to stop or just cry. Well, those must be some dumb people. Do they want their epidural to not work well and suffer the worst pain of their life for the next week? Do they want to increase their chances of being paralyzed? I didn’t really feel like explaining it to him then, but I do feel like explaining it to you.
g. This is everything they need to do with me. I lay down and they bring out a mask. They say that it is oxygen, but I remember from last time that this is the time when I go to sleep. I say “good night” to the doctor and surely enough, it knocks me out.
h. 6 hour surgery.
i. When I wake up, the first thing I check that my legs aren’t paralyzed. I am not particularly paranoid about that, but this potential epidural side effect is particularly troubling for me. Everything is fine.
j. I am under a hot blanket. I cannot get it off myself, so I have to wait until my mom arrives. It’s a relief, as I was starting to sweat.
k. I puke, most likely due to the anesthesia. There is mostly water and gull there, and I feel better afterwards.
l. No food, only water today. It’s not like I would want to eat anything, though.
m. On my body, the following foreign objects are present:
1. Two IV’s in the left hand – to take blood for tests.
2. One large IV near the right collar bone to deliver drugs.
3. Epidural in the upper spine, for delivering that anesthesia.
4. Two tubes from the operated lung, draining fluid under suction. They are between the ribs and you can observe red stuff leaking out into the collecting bucket. It’s not as bad as it sounds.
5. Catheter – in the penis, for removing pee right from the bladder without the need to stand up. You can’t feel it when it’s in.
6. Oxygen in the nostrils to help with breathing.
7. Blood oxygen percent monitor on the left index finger.
8. EKG – three sensors with wires leading to them to measure blood pressure and pulse.
9. Surgical tights to make blood clots in the legs less likely.
10. Gown to make me non-naked (no underwear, in case you are wondering).
n. All of these will be like points scored, as they are removed in the following days.
Day 2 (Thu)
a. Feeling alright, pumped with all sorts of drugs.
b. Catheter stops working. I can feel pressure in my bladder, but doctors say it’s ok. Physio comes for a short workout. While I am doing a bicycle-like movement with my right leg, pee starts draining quickly into the bag. When it stops, 1L has been added. After that, the catheter works fine until it’s out. I could have been in trouble if it hadn’t resumed operation.
c. Getting scratched is extremely pleasant, as a side-effect of the opiate drugs in the epidural. It’s such a powerful feeling that it almost completely hides the pain for the time being.
d. As I fall asleep, my pulse falls below the minimum allowed of around 50. The anesthesiologist tells them to lower this boundary. Athletes can have lower resting pulse rates.
Day 3 (Fri)
a. Catheter is taken out. It’s a bit of pain when they pull it out, but not too much. It’s better to get it out sooner, or it will be worse later. I find having it very uncomfortable. The simple of action of peeing on your own is a great achievement for me. The therapeutic value of moving around more is unquestionable.
b. From now on, I stand up to pee on my own often. This is also the first time I stand up at all.
c. There is significant pain in some of the non-operated areas of the body, such as the shoulder (which gets stretched very severely for the duration of the surgery, 6 hours in my case), the opposite side (on which you lie on a hard operating table), the neck, shoulder blade, and more. This happens due to the position you have to keep during the surgery. Massage helps a lot.
d. Throat hurts because a breathing tube scratched it while being inserted and taken out. This will only last one or two days and doesn’t mean you are getting a cold.
e. I watched boxing before going to sleep and things got gory. The guys were beating the shit out of each other and bleeding all over the place. I think this is what triggered the nightmare, but of course what gave it bite are the drugs in my blood.
f. Nightmare
1. There are people on the island, and it’s like a game. I get to view them all and I have to make a plan of actions for them. My plan involves them murdering each other. It’s disgusting and wrong.
2. The second part of the nightmare is lots of food on plates – it’s disgusting for me, trying to think about my girlfriend to push this image away.
3. Overall, I am able to sleep well despite all of this.
Day 4 (Sat) – First tube removal – the ‘feel like a junkie’ day
a. Starts out OK but after waking up and going back to sleep for an hour, I start feeling like shit. Not pain, just terrible dizziness and smell sensitivity.
b. I talk in a weeping voice like a little girl. I fight pain, but I cannot fight THIS – I keep asking why me, why now. It’s like there is nothing to fight.
c. I vomit and things get slightly better in the afternoon.
d. The windows here are huge and can be opened on request. Outside, there is a beautiful field with clean spring air. This is amazing and helps so much.
e. Removal of the first tube makes me feel great for some time.
f. I notice that my tongue is shedding all skin. I have to gargle and spit out dead skin for the next few days. It’s very disgusting with my newfound sensitivity to taste.
g. Nightmare
Day 5 (Sun) – strange night
a. Second tube removal is sanctioned for tomorrow by the surgeon
b. They give me a small enema, since I haven’t taken a crap in 4 days now. After it, I go 5 times during the day, although each is very small.
c. Extreme sensitivity to smell remains. I can’t drink anything but water and don’t even try to bring food near my nose other than plain bread. It must be a side effect of some drug.
d. Some sort of hypertension happens to me at night – lower body was burning hot even with the window open, and the sheet off, especially the legs. Breathing was very elevated, as was the heart rate.
e. Called favorite male nurse 3 times at night to pee and just ease the suffering by talking a bit. Peed out more than 1L in those few hours. This guy is awesome, he was also here for my previous surgery 3 years ago and I remember him. I will invite him for dinner in a couple of weeks.
f. Got to sleep around 3-4AM.
g. Nightmare
a. People talking inside my room, can’t understand what they are saying. When I open my eyes, the room is empty. After this lets me go, I am able to sleep.
b. Next, I manage some business in Japan and I am doing well. This allows me to sleep with some success.
Day 6 (Mon) – second tube removal
a. It’s the weekend and the resident doctor doesn’t want to remove the tube. I ask the resident to call the surgeon at home to get him to re-confirm it. Tube is removed.
b. The air leak happens again, although not as strong as last time. I request it to be closed up but the resident (who has a reputation for laziness) refuses. He says it’s too small to change anything.
c. I am nervous and scared of a pneumothorax. My second favorite male nurse is mad at the resident. He helps me by calling the surgeon directly. The surgeon thinks it should definitely be closed and he gets the resident to do it. The resident does it and then walks out crazy mad, first walking in the wrong direction in the hallway. He got owned!
d. Went outside through emergency exit to enjoy the sun twice in the afternoon. The weather is amazing and it helps recovery.
e. Took a crap twice during this day (not much).
f. Nightmare
a. Children / wife in a cellar from Austria story which was on the news.
b. Very removed, not scary, last nightmare.
Day 7 (Tue) – moved out of the ICU
a. I go to the physiotherapy group for 30 minutes. It’s a bit difficult but not too terrible.
b. Half of the metal stitches are removed from the main incision. It’s quite painless.
c. Epidural is removed. By now I have figured out that it was Narapin in the epidural which has been causing nightmares. Would you be surprised if I told you that nightmares stopped?
d. Exercise in physiotherapy group for 30 minutes. Primarily range of motion exercises, and stretching. I find it moderately difficult.
e. Physiotherapist visits me and tells about Tiger and Dragon Chi Gong. It’s a traditional Chinese exercise routine with lots of breathing exercises. Interesting, but not something I would do, probably.
f. Went online for the first time and wrote to friends and family that everything is well.
Day 8 (Wed)
a. I do the double physiotherapy group for 1 hour. First part is the same, while the second part involves lying flat on a mat and more substantial stretching and breathing exercises.
b. Feeling even better than day 7.
c. Forgot to go to both inhalations – too busy with other stuff. It’s not a big deal, but I’ll make sure to make them both tomorrow.
d. Lung volume not increasing significantly at around 2.6L. Good thing it’s at least that much.
e. 10 minutes at 60W on the bike, not that hard but did warm me up and heart rate peaking at 130.
f. Met with another patient, Tom, who has the exact same rare disease as me. He’s the first one other I’ve even seen. He’s here with his wife and I like them both very much. They can’t believe how well I’ve recovered in just a week. Frankly, it’s been indeed quite amazing so far. We talk a lot about life and the disease. My mom and I give them a lot of useful info and tips, and they are very happy to absorb the newfound knowledge.
g. 37.8C at 11:30PM, feeling alright though. No problems sleeping.
Day 9 (Thu)
a. All wound (metal) and tube (string) stitches are removed. The procedure is a bit more painful due to lower amount of painkillers in the blood, but not too bad.
b. Get a headache after stitch removal. Gymnastics for 1 hour are more difficult than yesterday. I think the headache may have to do with the changing weather.
c. We bring Tom’s wife some food while she is waiting for his surgery to finish. She is grateful, but seems to be almost breaking into tears at times. We bombard her with useful advice and information and it helps. Tom’s surgery is much simpler and shorter than mine, and is a success. She is ecstatic and calls and emails everyone. I am glad as well. Planning to visit him soon in the next few days.
d. I decided not to ride the bike today – too sleepy and tired. Having a nap instead. Will do it tomorrow for sure.
e. Finally took a crap after 3 days. Still not eating much.
f. In general feeling around the same as day 7, slightly worse than yesterday.
g. A cat came up to me while I was walking outside in the sun. It rubbed her soft ear and neck on my legs and stayed a while. Never underestimate the therapeutic value of a cat!
h. Flexibility in the shoulder and the operated area is increasing rapidly, and I am working on it extensively. It’s always easier to do it ASAP, since if it heals in place it will take weeks or months to get it back later.
i. Lung volume finally makes a move up to 2.8L. Want to achieve 4L before leaving.
j. Temperature reached 38C in the evening. Some paracetamol and lots of water brought it down to 37C by the time I was going to sleep.
Day 10 (Fri) – rain and well on the way to normal life
a. It’s Friday, the main surgeon and many other doctors and nurses visited me in the morning. This always makes me happy, and my smile was to the ears. In North America you never see the doctor and it blows big time. I didn’t have my shirt on and they all realize that I look better than them with my muscles and tan, save the big patch under which the surgery scar hides. The doctor is happy with my progress and everyone is impressed.
b. At the gymnastics group, everything is very easy today. At the end, the trainer asks us all to say “o” while breathing out slowly. Unlike yesterday, my “o” lasts much longer than everyone else’s. I felt a little bad towards the grandmas and grandpas. However, I know almost for a fact that my surgery was more difficult than any of theirs.
c. It finally rains today, but not before I get out and walk around in the warm sun for 30 minutes. Now the rain has stopped and the forecast promises 25C tomorrow. I love warm weather! When I am in the sun the pain seems to go away.
d. Made it to the bike today. He set it to 65W but I said it was too easy and so it was raised to 75W, and I was allowed to pedal for 14 minutes. I wanted to do more, but there were already people next in line for the bike. This was easier than day 8, even though the load was higher and the time longer. I felt less of a shortness of breath, and my heart rate topped out at 125 as compared to 130 before. I’ll try next week to get a double (20 min) practice slot. In my opinion, the bike is a perfect gradually increasing load for recovering from a lung surgery.
e. They brought a very tasty pizza for lunch (Tom said he ordered it last time) which I ate with great pleasure. It reminded me of home pizza my mom makes.
f. Lung volume finally made it past 3.0L. This is good – if I can keep increasing it ~0.2L per day, I should be able to easily achieve my 4L goal before being discharged. I believe my normal lung volume is around 5.5L, which would probably take two months to achieve. Of course, the actual oxygen processing capacity will be nowhere at the maximum at that point. This will take over 6 months to achieve.
g. Swelling – on the ass cheeks, sides, back, and legs – is now almost gone, and so is some of my fat. I love it! So far, it I am down from 78 kg (before the surgery) to 73 kg. Heck, this is an excellent bonus. I didn’t appreciate that extra fat. Last few months took a toll on the exercise and I have been eating too much. I was so nervous, busy with homework, and suffered a bunch of stupid injuries, which all kept me from playing as much tennis and volleyball as I usually do. I am ashamed of having gotten so much out of shape, but during my vacation just before the surgery I was exercising very well. Now, I’d estimate there is 5 kg of fat altogether left in my body, at which point it would be 0% and unhealthy. It would be a trip for sports, though!
h. I am having a Megadeth concert in my room on the laptop. Nobody minds. I missed one at home because of this surgery. Bought a ticket just before finding out that I need to have the next surgery ASAP.
i. The pain today is noticeably reduced. I just take one oxycodone (with some additive) in the morning and evening and some analgin in the middle and late night. Even with this little medication, the pain is lower than before. I think tomorrow I’ll start taking half of the oxycodone pill, and stop it altogether in the next few days. I always want to get off hard drugs ASAP. I’ve heard enough horror stories, and I like to have a clear mind.
j. Stupid TV is showing WTA tennis instead of ATP. Come on, I am tired of looking at girls play. I want more action.
k. Other than the main incision, the only significant soreness that remains is on the operated side’s shoulder blade, near the spine. I am not entirely sure why it gets so pushed on there. I will ask if I remember. Today it has become less swollen and slightly less painful. Massaging it feels very beneficial.
l. There isn’t really a fever today – it’s only 37.1C at 10:30PM.
m. One thing I am not happy about is that I still haven’t been able to take a full shower. I’ve been able to shower the lower half of my body for the last few days, though. They say tomorrow 100% - can’t wait. The feeling of warm water on the skin is amazing after such a long time.
Day 11 (Sat)
a. Internet isn’t working today. It will probably only be fixed on Monday.
b. It’s Saturday, so there is no inhalation and gymnastics. There is much more free time.
c. I am down to half an oxycodone tablet now.
d. It rained a few times, but it was sunny in between. I was outside walking around a lot during those breaks.
e. Up above 3.10L or so, making progress
Day 12 (Sun)
a. I decided to drop the oxycodone altogether. Analgin tablets only for me now. A bit more pain, but it’s not bad.
b. Internet still broken. They say tomorrow it will be fixed. I guess I’ll go right away in the morning if it is.
c. It’s the weekend so no physio group until tomorrow. I went to the end of the hallway stairwell to go up and down. I did 10 times and 15 minutes and worked up a bit of a sweat and a shortness of breath while getting to the top every time. It’s nice to be exercising and I am careful not to overdo it. It’s really funny because my legs are still the same legs that I could run a 10 storey building 20 times, so they do not feel the slightest fatigue from this exercise, being completely limited by the lung capacity. I think I’ll do well on the bike tomorrow.
d. There is no rain today, but it’s 12C and cloudy with a bit of wind. I wore my track suit and went for a walk outside for almost an hour. Not as enjoyable as walking around under the sun, but still fine.
e. Finally took a nice crap today. It’s good that the digestive system is finally starting to operate normally.
f. I weighed in at 70.4 kg this morning before breakfast. As inflammation is falling everywhere, so is the weight. Today I can tell the whole area around the incision is much less inflamed than yesterday. Just curious if I would break 70 tomorrow, morning, or I’ve reached my low point. Looks like 6-7 kg of fat is gone for good, and that’s cool for an athlete like me. For sure makes recovery easier after the surgery.
g. Physio have mats and weights, so perhaps tomorrow or the day after I will be able to do some sit-ups and maybe some other light exercises.
h. Tom dropped by with his wife today. He’s looking good and will be transferred from the ICU here tomorrow. He still got one tube and can’t wait to get rid of it.
i. Lung volume at 3.25L. Hoping to make progress towards 3.5L tomorrow. That would be sweet! Every day I can tell that it’s getting easier to walk and do more strenuous stuff.
j. Watched BBC Planet Earth HD – Deserts before sleep. Amazing how they get some of this footage!
Day 13 (Mon)
a. Down to 69.9 kg this morning, so still going down. I am very tempted to keep this light when I go home. Maybe drop the rest of the fat that still remains and replace it with more muscle. I wonder if I would jump proportionally higher being this light. That would give me around 1 m vertical when I am back to my fitness. Geez that would be around my elbow at the basketball hoop.
b. Almost my whole body has shed – skin (from the tan), tongue, lips, and even throat. I feel refreshed.
c. Got a haircut today. It’s crap, but what I had before was even worse.
d. 20 minutes at 90W on the bike today. Great progress once again. Heart rate topping out at 126. Tomorrow I’ll be going for 100 or 105W, we’ll see how I feel like. It’s good that they have a 20 minute slot for me now. I think I’ll be here for 3 more days and my goal was is top 120W on the bike before I leave. I should be able to do that.
e. Pizza for lunch sucked today. I hope they go back to the good stuff tomorrow.
f. Tom has been moved here today. His tube will hopefully be out tomorrow. He’s looking awesome. Met him at inhalation this morning and visited in the evening, he’s down the hall.
g. The weather is changing for the better. It was mostly sunny today after lunch, and warming up as well. Tomorrow it should be sunny, and the forecast is sun for 2 weeks ahead. Of course, I only need it for the next 5 days – after that, I’ll be home.
h. The shoulder blade is bothering me a lot right now. It’s really sore because my pain medication is down (voluntarily). I just hope it gets better soon. I don’t really remember it hurting this bad so long after the surgery.
i. They finally fixed the internet today, so I was able to send out some emails.
j. Sneezed a few times today. Trying to be careful, no desire to rip anything inside.
k. Lung volume around 3.35L today. I’ll keep pushing! The numbers don’t tell the whole story. In fact, now when I take a deep breath it actually resembles one.
Day 14 (Tue)
a. Weighed in at 69.5 kg this morning. Don’t think it will ever pass below 69.
b. The weather looked promising in the morning but ended up being cold. Wore the track suit and walked to the store and back. Took about an hour. Should have taken pain medication before leaving, as it all wore out and it was difficult on the way back.
c. Lung volume up to 3.6L today, so good progress. I don’t think I’ll make 4L, but I’ll get close. Depends on when we check out.
d. I have very good range of motion in my hand and shoulder now. Almost normal.
e. I did 105W on the bike for 20 minutes today. It was kind of difficult compared to 90W yesterday, but I am proud of the effort I put in. Heart rate went to 135 and I felt a shortness of breath at brief moments. Sweated enough that I needed to take a shower after. I think there is no way to increase by 15W again tomorrow. I’ll probably go up 5 or 10W. Perhaps 5W and then if after 5 minutes all is good, another 5W. Note: the guy next to me was doing 50W for 10 minutes.
f. A bunch of new people came to gymnastics this morning, including Tom and Richard. Richard is from New Zealand, and he also had a surgery here. They had a hard time, but it was also difficult for me at first. Tom’s chest tube is still not out, as too much liquid is draining. He’s hoping it gets taken out tomorrow, but it’s not so bad yet. I had to stay with it almost a week longer 3 years ago.
g. I hope my shoulder blade gets better in the next few days. It hurts really bad without pain medication, but not so bad with it.
h. Performing all the daily routines is becoming easy for me. I manage to get to inhalation and do all the breathing exercises without any trouble. It’s a good sign I should get out of here.
i. Getting a little bored, but it’s not so bad. I can visit Tom and Richard, use the Internet, watch some tennis, a movie, or go to the store. It’s great to be “off the leash” – no tubes, IV’s, or anything else which restricts my movement.
j. I have a lung function test scheduled for 7:45 am tomorrow morning. This measures both the volume and the ability of the diaphragm to move forcefully. I’ll have to wake up at 6 and take some painkillers to make sure pain doesn’t restrict my effort.
Day 15 (Wed)
a. I was right: my weight has now stabilized at 70 kg.
b. I do the lung function test and an x-ray in the morning.
c. I borrowed a 4 kg weight from physio. I can use it to get blood flowing in the hands.
d. Tom’s tube is finally out. I went to his room, but he was gone somewhere, which is what you’d expect.
e. Apparently, 105W that I did on the bike yesterday is an all-time post-surgical record for this hospital. No problem, I best my own record with 115W for 20 minutes today. Heart rate goes to 150, but interestingly it’s easier for me than yesterday. The towel is so sweaty that I replace it. I still have a couple of days here, so I can set a new record every time.
f. Lung function test results are very good. Some key indicator is at 44% already, whereas it was only at 33% after the surgery 3 years ago at this stage. Recovery is definitely going much better this time, surely due to all this physio and bicycle that I am doing. It really does make a dramatic difference.
g. We invited my favorite male nurse from the ICU for dinner. He drove us around a bit, and then we went for some dinner. Definitely the best food I’ve eaten since the surgery. I had roasted lamb and a very tasty bean soup.
h. I got some anti-inflammation cream to use on my sore shoulder blade yesterday. It seems to be making a slight difference for the better. It’s the kind you also use for sports trauma. I suppose what I have on my shoulder blade would result if somebody hit me really hard with a baseball bat there.
Day 16 (Thu)
a. I am feeling continuously better, so the doctor reduces the pain medication further. I find that half of the 10 mg oxycodone (talgine) tablet works really well. Just to think, in the ICU I was getting two 20 mg tablets like that, in addition to all the other stuff!
b. Richard tried to stay for the second part of the exercise group, but he couldn’t lie flat on the mat due to too much pain. I remember how much difficulty I was having with that the first time as well. It’s much tougher for him, since he didn’t have epidural.
c. I did 120W for 20 minutes on the bike today, therefore achieving the goal I set for myself. Pulse maxes out at 150, same as yesterday. It’s not particularly difficult at this stage. I want to do 125W for 25 minutes tomorrow – it will be the last time.
d. Tom came down to use the treadmill today. With his tube out he’s also eager to recover ASAP. He did 20 minutes, but the treadmill has no indication of the wattage. Regardless, he can slowly increase the speed or the incline every day, and measure his progress that way.
e. My hands are slightly sore from the 4 kg weight. Damn, they will need some serious exercise when I get back home! But then again, so will every other body part.
f. We prepared the English version of the surgical report with the doctor today. Just a formality, I don’t think anyone except my oncologist will even read it. I am considered unresectable, you see.
g. For dinner we go to a cafe near the big store, and I have this soup I’ve been hunting all along, along with a nice sandwich. Mmm… so nice be eating good food. There is a 100% chance I will do the same thing tomorrow. I like that soup so much that I’ll try to get my mom to learn how to cook it.
h. The cat caught a mouse today! My mom saw it pass by outside with the mouse in its mouth while I was having a nap. It usually passes by outside a few times every day.
i. The scar looks really good. It has now become entirely “fresh pink” in color with no dark areas. Fortunately, it’s in the same place as the previous one was, so I look less like Frankenstein.
j. Tomorrow is the last day. With Tom and Richard here, as well as my laptop it wasn’t nearly as bad as I thought it would be. Last time was much more boring and I was very restless towards the end. I will be coming home on very different terms, and in a much better physical conditions. I just hope the weather is sunny back home!
Day 17 (Fri)
a. Weather is cloudy again today, but that’s ok because we are leaving at 5 am tomorrow. I checked, and back home it is 20C and sunny, so I have something to look forward to. I also have that graduation ceremony the day after I get back. Funny, I am probably the only student in the department who had cancer throughout the 4 years. I was also probably one of the fittest students in the department.
b. I did 120W for 25 minutes on the bike today. The physio gal figured my pulse was already too high to go to 125W. First, I was a little pissed, but now I agree with her. Last 5 minutes were pretty difficult, and pulse topped out at 155. Patience is a virtue, and there is no need to hurry. The best recovery is a steady one.
c. When I was preparing for the surgery, another young lad was checking out. Unfortunately, they brought him back in an ambulance today – with a chest tube. He had a pneumothorax (a collapsed lung), while lifting a heavy box at home. He looked devastated. I know what it feels like, since I also had one a month after the first surgery. I had to stay at the hospital back home, which is much crappier than this one. In fact, I consider it outright terrible. That complication was the worst thing that ever happened to me medically. I dropped by the guy’s room to make him feel a little better. He should be happy he gets to recover here. He has to wait, and the lung will heal once again. I think he was glad someone showed some concern, which was my purpose.
d. Tom was having a rough day today. He was feeling tired and worried. After his first surgery, they had to re-insert a chest tube around this time, because his lung was not fully expanded due to an air leak. The mind is a funny thing, and it can certainly play tricks on you. I am pretty sure Tom will be fine, and tomorrow will be a much better day for him. [In retrospect, nothing went wrong this time around.]
e. The bags are packed, the taxi is ordered. Astalavista, baby.
Day 18 (Sat) – flying home
a. The taxi picked us up at 5 am and dropped us off at the airport within 20 minutes without incident.
b. We took a short 1 hour flight, and then had a 3 hour connection. I found an outlet and watched a movie and some tennis to kill time, while conserving the battery for the 10 hour flight home.
c. The pain level was good throughout the flight. Last time it was much worse. No difficulties breathing.
d. I slept as much as I could to aid the shift back to our time upon arrival. Also watched a long tennis match, and some tennis lessons.
e. 1.5 hours left until arrival and I am pretty bored. The laptop battery has 20 minutes left in it, having lasted around 4.5 hours.
f. After a 45 minute customs line up I am finally home.
After
a. Participated in Tier 1 indoor volleyball tournaments. Didn’t win anything, but did fine from a physical standpoint. The only one I struggled in a bit was 3 months after the aforementioned surgery. Won some lesser tournaments, sometimes playing 8 hours in one day. Was a team captain in a league for around 5 months.
b. Went on challenging day hikes (e.g. 30 km in one day) without trouble, and travelled extensively.
c. Got my first job and worked for 3 months professionally, before our company closed down entirely due to the financial situation.
d. Played lots of tennis, but not yet at a level where I could show any results. I am planning to start playing tournaments next year.
9 months later
e. Almost complete recovery achieved on the right side, as showed by sprint times and overall physical fitness.
f. The left side now also needs to be re-done after 3 years 10 months.
Left Side surgery 9 months later
Summary
a. Pre-surgery lung function test showed oxygen consumption of 52 ml/kg/sec, which the doctors said is amazing for anyone, let alone for someone who had around over 200 mets resected in 3 separate surgeries. It’s not very far from professional athletes. I’ll take all the credit Along with the laser technology, and the surgeon, of course. This is quite encouraging news for me. In terms of volume, it was 82.5% of the original.
b. Only 16 suspected metastases were removed. Pathology showed that 3 of them were scar tissue, which remained hard and spherical even after almost 4 years. This resulted in a MUCH faster and easier recovery! Very noticeable, since all my previous resections had 39-106 mets each.
c. Right after waking up from surgery, lung volume was already at 3.0L on the trainer.
d. Pain level in the first few days is around 3/10 – very good pain management!
e. On the 12th day I perform the pre-checkout tests. Lung function test showed a volume of 50%, whereas during the previous surgery I only had 42% on the 14th day.
Notable Milestones
a. Tubes removed on Day 2 & 6
This is a description of what a patient goes through during a thoracotomy – an open lung surgery.
Day 0 (Tue) – preparations and tests
a. There are all sorts of blood work and other tests you may expect.
b. They shave your upper body of all hair on the side of the surgery. I highly recommend bringing your own razor and shaving cream and doing it yourself to a large extent. Tom let them do it and he got lots of small skin cuts, and so did I last time.
c. I do the EKG on the bike – they keep increasing the load every 3 minutes by 30W until you can’t handle it anymore. This tests your lungs and heart operation. I top out at 270W. The sensors don’t allow me to get up from the seat while biking. I am sure I could pull another 30W if I could. I’ll try it on my own later when I’m recovered. The anesthesiologist said he could do 320W, so now I feel challenged. I am sure that on a long distance he would kill me on the bike, but for 3 minutes there is no reason I should not be able to beat him
d. You can eat whatever you want up until the lunch time, but nothing except a very thin soup at 5 pm after that. This is to make sure your stomach is empty for the surgery. You may drink as you wish.
e. I went for a 25 minute run in the evening. Very short, so I am in no way tired, just warmed up a little bit.
f. You get a a sleeping pill in the evening. I think it’s particularly effective against me, since I never take any of that stuff.
Day 1 (Wed) – day of the surgery
a. The nurse woke me up at 5:30 am. I think they then gave me another pill to keep me relaxed. It’s not like I was anxious anyway.
b. I wear the gown and surgical tights (no underwear). They take me on the bed to the preparation room.
c. There’s a guy here whose sole function is to talk to me and to entertain me.
d. The anesthesiologist comes in from behind to insert the epidural into the spine. All other catheters and IVs will be inserted when I am already asleep, but for the epidural you must be awake to make sure nothing goes wrong.
e. I sit on the edge of the bed with my back bent slightly forward and relaxed, head bowed forward to the chest. The doctor uses a needle to insert the epidural catheter into the upper region of the spine (do not let your imagination play tricks on you – it’s not as bad as it sounds). I remain dead still and silent during the procedure. Of course, I feel the pain and discomfort, but I am much more concerned about the doctor getting it in successfully, so I let him do his work in peace. A well-placed epidural is the best painkiller of all.
f. The guy who’s there to talk to me is apparently amazed at how I take it. He says some people yell and scream for the doctor to stop or just cry. Well, those must be some dumb people. Do they want their epidural to not work well and suffer the worst pain of their life for the next week? Do they want to increase their chances of being paralyzed? I didn’t really feel like explaining it to him then, but I do feel like explaining it to you.
g. This is everything they need to do with me. I lay down and they bring out a mask. They say that it is oxygen, but I remember from last time that this is the time when I go to sleep. I say “good night” to the doctor and surely enough, it knocks me out.
h. 6 hour surgery.
i. When I wake up, the first thing I check that my legs aren’t paralyzed. I am not particularly paranoid about that, but this potential epidural side effect is particularly troubling for me. Everything is fine.
j. I am under a hot blanket. I cannot get it off myself, so I have to wait until my mom arrives. It’s a relief, as I was starting to sweat.
k. I puke, most likely due to the anesthesia. There is mostly water and gull there, and I feel better afterwards.
l. No food, only water today. It’s not like I would want to eat anything, though.
m. On my body, the following foreign objects are present:
1. Two IV’s in the left hand – to take blood for tests.
2. One large IV near the right collar bone to deliver drugs.
3. Epidural in the upper spine, for delivering that anesthesia.
4. Two tubes from the operated lung, draining fluid under suction. They are between the ribs and you can observe red stuff leaking out into the collecting bucket. It’s not as bad as it sounds.
5. Catheter – in the penis, for removing pee right from the bladder without the need to stand up. You can’t feel it when it’s in.
6. Oxygen in the nostrils to help with breathing.
7. Blood oxygen percent monitor on the left index finger.
8. EKG – three sensors with wires leading to them to measure blood pressure and pulse.
9. Surgical tights to make blood clots in the legs less likely.
10. Gown to make me non-naked (no underwear, in case you are wondering).
n. All of these will be like points scored, as they are removed in the following days.
Day 2 (Thu)
a. Feeling alright, pumped with all sorts of drugs.
b. Catheter stops working. I can feel pressure in my bladder, but doctors say it’s ok. Physio comes for a short workout. While I am doing a bicycle-like movement with my right leg, pee starts draining quickly into the bag. When it stops, 1L has been added. After that, the catheter works fine until it’s out. I could have been in trouble if it hadn’t resumed operation.
c. Getting scratched is extremely pleasant, as a side-effect of the opiate drugs in the epidural. It’s such a powerful feeling that it almost completely hides the pain for the time being.
d. As I fall asleep, my pulse falls below the minimum allowed of around 50. The anesthesiologist tells them to lower this boundary. Athletes can have lower resting pulse rates.
Day 3 (Fri)
a. Catheter is taken out. It’s a bit of pain when they pull it out, but not too much. It’s better to get it out sooner, or it will be worse later. I find having it very uncomfortable. The simple of action of peeing on your own is a great achievement for me. The therapeutic value of moving around more is unquestionable.
b. From now on, I stand up to pee on my own often. This is also the first time I stand up at all.
c. There is significant pain in some of the non-operated areas of the body, such as the shoulder (which gets stretched very severely for the duration of the surgery, 6 hours in my case), the opposite side (on which you lie on a hard operating table), the neck, shoulder blade, and more. This happens due to the position you have to keep during the surgery. Massage helps a lot.
d. Throat hurts because a breathing tube scratched it while being inserted and taken out. This will only last one or two days and doesn’t mean you are getting a cold.
e. I watched boxing before going to sleep and things got gory. The guys were beating the shit out of each other and bleeding all over the place. I think this is what triggered the nightmare, but of course what gave it bite are the drugs in my blood.
f. Nightmare
1. There are people on the island, and it’s like a game. I get to view them all and I have to make a plan of actions for them. My plan involves them murdering each other. It’s disgusting and wrong.
2. The second part of the nightmare is lots of food on plates – it’s disgusting for me, trying to think about my girlfriend to push this image away.
3. Overall, I am able to sleep well despite all of this.
Day 4 (Sat) – First tube removal – the ‘feel like a junkie’ day
a. Starts out OK but after waking up and going back to sleep for an hour, I start feeling like shit. Not pain, just terrible dizziness and smell sensitivity.
b. I talk in a weeping voice like a little girl. I fight pain, but I cannot fight THIS – I keep asking why me, why now. It’s like there is nothing to fight.
c. I vomit and things get slightly better in the afternoon.
d. The windows here are huge and can be opened on request. Outside, there is a beautiful field with clean spring air. This is amazing and helps so much.
e. Removal of the first tube makes me feel great for some time.
f. I notice that my tongue is shedding all skin. I have to gargle and spit out dead skin for the next few days. It’s very disgusting with my newfound sensitivity to taste.
g. Nightmare
Day 5 (Sun) – strange night
a. Second tube removal is sanctioned for tomorrow by the surgeon
b. They give me a small enema, since I haven’t taken a crap in 4 days now. After it, I go 5 times during the day, although each is very small.
c. Extreme sensitivity to smell remains. I can’t drink anything but water and don’t even try to bring food near my nose other than plain bread. It must be a side effect of some drug.
d. Some sort of hypertension happens to me at night – lower body was burning hot even with the window open, and the sheet off, especially the legs. Breathing was very elevated, as was the heart rate.
e. Called favorite male nurse 3 times at night to pee and just ease the suffering by talking a bit. Peed out more than 1L in those few hours. This guy is awesome, he was also here for my previous surgery 3 years ago and I remember him. I will invite him for dinner in a couple of weeks.
f. Got to sleep around 3-4AM.
g. Nightmare
a. People talking inside my room, can’t understand what they are saying. When I open my eyes, the room is empty. After this lets me go, I am able to sleep.
b. Next, I manage some business in Japan and I am doing well. This allows me to sleep with some success.
Day 6 (Mon) – second tube removal
a. It’s the weekend and the resident doctor doesn’t want to remove the tube. I ask the resident to call the surgeon at home to get him to re-confirm it. Tube is removed.
b. The air leak happens again, although not as strong as last time. I request it to be closed up but the resident (who has a reputation for laziness) refuses. He says it’s too small to change anything.
c. I am nervous and scared of a pneumothorax. My second favorite male nurse is mad at the resident. He helps me by calling the surgeon directly. The surgeon thinks it should definitely be closed and he gets the resident to do it. The resident does it and then walks out crazy mad, first walking in the wrong direction in the hallway. He got owned!
d. Went outside through emergency exit to enjoy the sun twice in the afternoon. The weather is amazing and it helps recovery.
e. Took a crap twice during this day (not much).
f. Nightmare
a. Children / wife in a cellar from Austria story which was on the news.
b. Very removed, not scary, last nightmare.
Day 7 (Tue) – moved out of the ICU
a. I go to the physiotherapy group for 30 minutes. It’s a bit difficult but not too terrible.
b. Half of the metal stitches are removed from the main incision. It’s quite painless.
c. Epidural is removed. By now I have figured out that it was Narapin in the epidural which has been causing nightmares. Would you be surprised if I told you that nightmares stopped?
d. Exercise in physiotherapy group for 30 minutes. Primarily range of motion exercises, and stretching. I find it moderately difficult.
e. Physiotherapist visits me and tells about Tiger and Dragon Chi Gong. It’s a traditional Chinese exercise routine with lots of breathing exercises. Interesting, but not something I would do, probably.
f. Went online for the first time and wrote to friends and family that everything is well.
Day 8 (Wed)
a. I do the double physiotherapy group for 1 hour. First part is the same, while the second part involves lying flat on a mat and more substantial stretching and breathing exercises.
b. Feeling even better than day 7.
c. Forgot to go to both inhalations – too busy with other stuff. It’s not a big deal, but I’ll make sure to make them both tomorrow.
d. Lung volume not increasing significantly at around 2.6L. Good thing it’s at least that much.
e. 10 minutes at 60W on the bike, not that hard but did warm me up and heart rate peaking at 130.
f. Met with another patient, Tom, who has the exact same rare disease as me. He’s the first one other I’ve even seen. He’s here with his wife and I like them both very much. They can’t believe how well I’ve recovered in just a week. Frankly, it’s been indeed quite amazing so far. We talk a lot about life and the disease. My mom and I give them a lot of useful info and tips, and they are very happy to absorb the newfound knowledge.
g. 37.8C at 11:30PM, feeling alright though. No problems sleeping.
Day 9 (Thu)
a. All wound (metal) and tube (string) stitches are removed. The procedure is a bit more painful due to lower amount of painkillers in the blood, but not too bad.
b. Get a headache after stitch removal. Gymnastics for 1 hour are more difficult than yesterday. I think the headache may have to do with the changing weather.
c. We bring Tom’s wife some food while she is waiting for his surgery to finish. She is grateful, but seems to be almost breaking into tears at times. We bombard her with useful advice and information and it helps. Tom’s surgery is much simpler and shorter than mine, and is a success. She is ecstatic and calls and emails everyone. I am glad as well. Planning to visit him soon in the next few days.
d. I decided not to ride the bike today – too sleepy and tired. Having a nap instead. Will do it tomorrow for sure.
e. Finally took a crap after 3 days. Still not eating much.
f. In general feeling around the same as day 7, slightly worse than yesterday.
g. A cat came up to me while I was walking outside in the sun. It rubbed her soft ear and neck on my legs and stayed a while. Never underestimate the therapeutic value of a cat!
h. Flexibility in the shoulder and the operated area is increasing rapidly, and I am working on it extensively. It’s always easier to do it ASAP, since if it heals in place it will take weeks or months to get it back later.
i. Lung volume finally makes a move up to 2.8L. Want to achieve 4L before leaving.
j. Temperature reached 38C in the evening. Some paracetamol and lots of water brought it down to 37C by the time I was going to sleep.
Day 10 (Fri) – rain and well on the way to normal life
a. It’s Friday, the main surgeon and many other doctors and nurses visited me in the morning. This always makes me happy, and my smile was to the ears. In North America you never see the doctor and it blows big time. I didn’t have my shirt on and they all realize that I look better than them with my muscles and tan, save the big patch under which the surgery scar hides. The doctor is happy with my progress and everyone is impressed.
b. At the gymnastics group, everything is very easy today. At the end, the trainer asks us all to say “o” while breathing out slowly. Unlike yesterday, my “o” lasts much longer than everyone else’s. I felt a little bad towards the grandmas and grandpas. However, I know almost for a fact that my surgery was more difficult than any of theirs.
c. It finally rains today, but not before I get out and walk around in the warm sun for 30 minutes. Now the rain has stopped and the forecast promises 25C tomorrow. I love warm weather! When I am in the sun the pain seems to go away.
d. Made it to the bike today. He set it to 65W but I said it was too easy and so it was raised to 75W, and I was allowed to pedal for 14 minutes. I wanted to do more, but there were already people next in line for the bike. This was easier than day 8, even though the load was higher and the time longer. I felt less of a shortness of breath, and my heart rate topped out at 125 as compared to 130 before. I’ll try next week to get a double (20 min) practice slot. In my opinion, the bike is a perfect gradually increasing load for recovering from a lung surgery.
e. They brought a very tasty pizza for lunch (Tom said he ordered it last time) which I ate with great pleasure. It reminded me of home pizza my mom makes.
f. Lung volume finally made it past 3.0L. This is good – if I can keep increasing it ~0.2L per day, I should be able to easily achieve my 4L goal before being discharged. I believe my normal lung volume is around 5.5L, which would probably take two months to achieve. Of course, the actual oxygen processing capacity will be nowhere at the maximum at that point. This will take over 6 months to achieve.
g. Swelling – on the ass cheeks, sides, back, and legs – is now almost gone, and so is some of my fat. I love it! So far, it I am down from 78 kg (before the surgery) to 73 kg. Heck, this is an excellent bonus. I didn’t appreciate that extra fat. Last few months took a toll on the exercise and I have been eating too much. I was so nervous, busy with homework, and suffered a bunch of stupid injuries, which all kept me from playing as much tennis and volleyball as I usually do. I am ashamed of having gotten so much out of shape, but during my vacation just before the surgery I was exercising very well. Now, I’d estimate there is 5 kg of fat altogether left in my body, at which point it would be 0% and unhealthy. It would be a trip for sports, though!
h. I am having a Megadeth concert in my room on the laptop. Nobody minds. I missed one at home because of this surgery. Bought a ticket just before finding out that I need to have the next surgery ASAP.
i. The pain today is noticeably reduced. I just take one oxycodone (with some additive) in the morning and evening and some analgin in the middle and late night. Even with this little medication, the pain is lower than before. I think tomorrow I’ll start taking half of the oxycodone pill, and stop it altogether in the next few days. I always want to get off hard drugs ASAP. I’ve heard enough horror stories, and I like to have a clear mind.
j. Stupid TV is showing WTA tennis instead of ATP. Come on, I am tired of looking at girls play. I want more action.
k. Other than the main incision, the only significant soreness that remains is on the operated side’s shoulder blade, near the spine. I am not entirely sure why it gets so pushed on there. I will ask if I remember. Today it has become less swollen and slightly less painful. Massaging it feels very beneficial.
l. There isn’t really a fever today – it’s only 37.1C at 10:30PM.
m. One thing I am not happy about is that I still haven’t been able to take a full shower. I’ve been able to shower the lower half of my body for the last few days, though. They say tomorrow 100% - can’t wait. The feeling of warm water on the skin is amazing after such a long time.
Day 11 (Sat)
a. Internet isn’t working today. It will probably only be fixed on Monday.
b. It’s Saturday, so there is no inhalation and gymnastics. There is much more free time.
c. I am down to half an oxycodone tablet now.
d. It rained a few times, but it was sunny in between. I was outside walking around a lot during those breaks.
e. Up above 3.10L or so, making progress
Day 12 (Sun)
a. I decided to drop the oxycodone altogether. Analgin tablets only for me now. A bit more pain, but it’s not bad.
b. Internet still broken. They say tomorrow it will be fixed. I guess I’ll go right away in the morning if it is.
c. It’s the weekend so no physio group until tomorrow. I went to the end of the hallway stairwell to go up and down. I did 10 times and 15 minutes and worked up a bit of a sweat and a shortness of breath while getting to the top every time. It’s nice to be exercising and I am careful not to overdo it. It’s really funny because my legs are still the same legs that I could run a 10 storey building 20 times, so they do not feel the slightest fatigue from this exercise, being completely limited by the lung capacity. I think I’ll do well on the bike tomorrow.
d. There is no rain today, but it’s 12C and cloudy with a bit of wind. I wore my track suit and went for a walk outside for almost an hour. Not as enjoyable as walking around under the sun, but still fine.
e. Finally took a nice crap today. It’s good that the digestive system is finally starting to operate normally.
f. I weighed in at 70.4 kg this morning before breakfast. As inflammation is falling everywhere, so is the weight. Today I can tell the whole area around the incision is much less inflamed than yesterday. Just curious if I would break 70 tomorrow, morning, or I’ve reached my low point. Looks like 6-7 kg of fat is gone for good, and that’s cool for an athlete like me. For sure makes recovery easier after the surgery.
g. Physio have mats and weights, so perhaps tomorrow or the day after I will be able to do some sit-ups and maybe some other light exercises.
h. Tom dropped by with his wife today. He’s looking good and will be transferred from the ICU here tomorrow. He still got one tube and can’t wait to get rid of it.
i. Lung volume at 3.25L. Hoping to make progress towards 3.5L tomorrow. That would be sweet! Every day I can tell that it’s getting easier to walk and do more strenuous stuff.
j. Watched BBC Planet Earth HD – Deserts before sleep. Amazing how they get some of this footage!
Day 13 (Mon)
a. Down to 69.9 kg this morning, so still going down. I am very tempted to keep this light when I go home. Maybe drop the rest of the fat that still remains and replace it with more muscle. I wonder if I would jump proportionally higher being this light. That would give me around 1 m vertical when I am back to my fitness. Geez that would be around my elbow at the basketball hoop.
b. Almost my whole body has shed – skin (from the tan), tongue, lips, and even throat. I feel refreshed.
c. Got a haircut today. It’s crap, but what I had before was even worse.
d. 20 minutes at 90W on the bike today. Great progress once again. Heart rate topping out at 126. Tomorrow I’ll be going for 100 or 105W, we’ll see how I feel like. It’s good that they have a 20 minute slot for me now. I think I’ll be here for 3 more days and my goal was is top 120W on the bike before I leave. I should be able to do that.
e. Pizza for lunch sucked today. I hope they go back to the good stuff tomorrow.
f. Tom has been moved here today. His tube will hopefully be out tomorrow. He’s looking awesome. Met him at inhalation this morning and visited in the evening, he’s down the hall.
g. The weather is changing for the better. It was mostly sunny today after lunch, and warming up as well. Tomorrow it should be sunny, and the forecast is sun for 2 weeks ahead. Of course, I only need it for the next 5 days – after that, I’ll be home.
h. The shoulder blade is bothering me a lot right now. It’s really sore because my pain medication is down (voluntarily). I just hope it gets better soon. I don’t really remember it hurting this bad so long after the surgery.
i. They finally fixed the internet today, so I was able to send out some emails.
j. Sneezed a few times today. Trying to be careful, no desire to rip anything inside.
k. Lung volume around 3.35L today. I’ll keep pushing! The numbers don’t tell the whole story. In fact, now when I take a deep breath it actually resembles one.
Day 14 (Tue)
a. Weighed in at 69.5 kg this morning. Don’t think it will ever pass below 69.
b. The weather looked promising in the morning but ended up being cold. Wore the track suit and walked to the store and back. Took about an hour. Should have taken pain medication before leaving, as it all wore out and it was difficult on the way back.
c. Lung volume up to 3.6L today, so good progress. I don’t think I’ll make 4L, but I’ll get close. Depends on when we check out.
d. I have very good range of motion in my hand and shoulder now. Almost normal.
e. I did 105W on the bike for 20 minutes today. It was kind of difficult compared to 90W yesterday, but I am proud of the effort I put in. Heart rate went to 135 and I felt a shortness of breath at brief moments. Sweated enough that I needed to take a shower after. I think there is no way to increase by 15W again tomorrow. I’ll probably go up 5 or 10W. Perhaps 5W and then if after 5 minutes all is good, another 5W. Note: the guy next to me was doing 50W for 10 minutes.
f. A bunch of new people came to gymnastics this morning, including Tom and Richard. Richard is from New Zealand, and he also had a surgery here. They had a hard time, but it was also difficult for me at first. Tom’s chest tube is still not out, as too much liquid is draining. He’s hoping it gets taken out tomorrow, but it’s not so bad yet. I had to stay with it almost a week longer 3 years ago.
g. I hope my shoulder blade gets better in the next few days. It hurts really bad without pain medication, but not so bad with it.
h. Performing all the daily routines is becoming easy for me. I manage to get to inhalation and do all the breathing exercises without any trouble. It’s a good sign I should get out of here.
i. Getting a little bored, but it’s not so bad. I can visit Tom and Richard, use the Internet, watch some tennis, a movie, or go to the store. It’s great to be “off the leash” – no tubes, IV’s, or anything else which restricts my movement.
j. I have a lung function test scheduled for 7:45 am tomorrow morning. This measures both the volume and the ability of the diaphragm to move forcefully. I’ll have to wake up at 6 and take some painkillers to make sure pain doesn’t restrict my effort.
Day 15 (Wed)
a. I was right: my weight has now stabilized at 70 kg.
b. I do the lung function test and an x-ray in the morning.
c. I borrowed a 4 kg weight from physio. I can use it to get blood flowing in the hands.
d. Tom’s tube is finally out. I went to his room, but he was gone somewhere, which is what you’d expect.
e. Apparently, 105W that I did on the bike yesterday is an all-time post-surgical record for this hospital. No problem, I best my own record with 115W for 20 minutes today. Heart rate goes to 150, but interestingly it’s easier for me than yesterday. The towel is so sweaty that I replace it. I still have a couple of days here, so I can set a new record every time.
f. Lung function test results are very good. Some key indicator is at 44% already, whereas it was only at 33% after the surgery 3 years ago at this stage. Recovery is definitely going much better this time, surely due to all this physio and bicycle that I am doing. It really does make a dramatic difference.
g. We invited my favorite male nurse from the ICU for dinner. He drove us around a bit, and then we went for some dinner. Definitely the best food I’ve eaten since the surgery. I had roasted lamb and a very tasty bean soup.
h. I got some anti-inflammation cream to use on my sore shoulder blade yesterday. It seems to be making a slight difference for the better. It’s the kind you also use for sports trauma. I suppose what I have on my shoulder blade would result if somebody hit me really hard with a baseball bat there.
Day 16 (Thu)
a. I am feeling continuously better, so the doctor reduces the pain medication further. I find that half of the 10 mg oxycodone (talgine) tablet works really well. Just to think, in the ICU I was getting two 20 mg tablets like that, in addition to all the other stuff!
b. Richard tried to stay for the second part of the exercise group, but he couldn’t lie flat on the mat due to too much pain. I remember how much difficulty I was having with that the first time as well. It’s much tougher for him, since he didn’t have epidural.
c. I did 120W for 20 minutes on the bike today, therefore achieving the goal I set for myself. Pulse maxes out at 150, same as yesterday. It’s not particularly difficult at this stage. I want to do 125W for 25 minutes tomorrow – it will be the last time.
d. Tom came down to use the treadmill today. With his tube out he’s also eager to recover ASAP. He did 20 minutes, but the treadmill has no indication of the wattage. Regardless, he can slowly increase the speed or the incline every day, and measure his progress that way.
e. My hands are slightly sore from the 4 kg weight. Damn, they will need some serious exercise when I get back home! But then again, so will every other body part.
f. We prepared the English version of the surgical report with the doctor today. Just a formality, I don’t think anyone except my oncologist will even read it. I am considered unresectable, you see.
g. For dinner we go to a cafe near the big store, and I have this soup I’ve been hunting all along, along with a nice sandwich. Mmm… so nice be eating good food. There is a 100% chance I will do the same thing tomorrow. I like that soup so much that I’ll try to get my mom to learn how to cook it.
h. The cat caught a mouse today! My mom saw it pass by outside with the mouse in its mouth while I was having a nap. It usually passes by outside a few times every day.
i. The scar looks really good. It has now become entirely “fresh pink” in color with no dark areas. Fortunately, it’s in the same place as the previous one was, so I look less like Frankenstein.
j. Tomorrow is the last day. With Tom and Richard here, as well as my laptop it wasn’t nearly as bad as I thought it would be. Last time was much more boring and I was very restless towards the end. I will be coming home on very different terms, and in a much better physical conditions. I just hope the weather is sunny back home!
Day 17 (Fri)
a. Weather is cloudy again today, but that’s ok because we are leaving at 5 am tomorrow. I checked, and back home it is 20C and sunny, so I have something to look forward to. I also have that graduation ceremony the day after I get back. Funny, I am probably the only student in the department who had cancer throughout the 4 years. I was also probably one of the fittest students in the department.
b. I did 120W for 25 minutes on the bike today. The physio gal figured my pulse was already too high to go to 125W. First, I was a little pissed, but now I agree with her. Last 5 minutes were pretty difficult, and pulse topped out at 155. Patience is a virtue, and there is no need to hurry. The best recovery is a steady one.
c. When I was preparing for the surgery, another young lad was checking out. Unfortunately, they brought him back in an ambulance today – with a chest tube. He had a pneumothorax (a collapsed lung), while lifting a heavy box at home. He looked devastated. I know what it feels like, since I also had one a month after the first surgery. I had to stay at the hospital back home, which is much crappier than this one. In fact, I consider it outright terrible. That complication was the worst thing that ever happened to me medically. I dropped by the guy’s room to make him feel a little better. He should be happy he gets to recover here. He has to wait, and the lung will heal once again. I think he was glad someone showed some concern, which was my purpose.
d. Tom was having a rough day today. He was feeling tired and worried. After his first surgery, they had to re-insert a chest tube around this time, because his lung was not fully expanded due to an air leak. The mind is a funny thing, and it can certainly play tricks on you. I am pretty sure Tom will be fine, and tomorrow will be a much better day for him. [In retrospect, nothing went wrong this time around.]
e. The bags are packed, the taxi is ordered. Astalavista, baby.
Day 18 (Sat) – flying home
a. The taxi picked us up at 5 am and dropped us off at the airport within 20 minutes without incident.
b. We took a short 1 hour flight, and then had a 3 hour connection. I found an outlet and watched a movie and some tennis to kill time, while conserving the battery for the 10 hour flight home.
c. The pain level was good throughout the flight. Last time it was much worse. No difficulties breathing.
d. I slept as much as I could to aid the shift back to our time upon arrival. Also watched a long tennis match, and some tennis lessons.
e. 1.5 hours left until arrival and I am pretty bored. The laptop battery has 20 minutes left in it, having lasted around 4.5 hours.
f. After a 45 minute customs line up I am finally home.
After
a. Participated in Tier 1 indoor volleyball tournaments. Didn’t win anything, but did fine from a physical standpoint. The only one I struggled in a bit was 3 months after the aforementioned surgery. Won some lesser tournaments, sometimes playing 8 hours in one day. Was a team captain in a league for around 5 months.
b. Went on challenging day hikes (e.g. 30 km in one day) without trouble, and travelled extensively.
c. Got my first job and worked for 3 months professionally, before our company closed down entirely due to the financial situation.
d. Played lots of tennis, but not yet at a level where I could show any results. I am planning to start playing tournaments next year.
9 months later
e. Almost complete recovery achieved on the right side, as showed by sprint times and overall physical fitness.
f. The left side now also needs to be re-done after 3 years 10 months.
Left Side surgery 9 months later
Summary
a. Pre-surgery lung function test showed oxygen consumption of 52 ml/kg/sec, which the doctors said is amazing for anyone, let alone for someone who had around over 200 mets resected in 3 separate surgeries. It’s not very far from professional athletes. I’ll take all the credit Along with the laser technology, and the surgeon, of course. This is quite encouraging news for me. In terms of volume, it was 82.5% of the original.
b. Only 16 suspected metastases were removed. Pathology showed that 3 of them were scar tissue, which remained hard and spherical even after almost 4 years. This resulted in a MUCH faster and easier recovery! Very noticeable, since all my previous resections had 39-106 mets each.
c. Right after waking up from surgery, lung volume was already at 3.0L on the trainer.
d. Pain level in the first few days is around 3/10 – very good pain management!
e. On the 12th day I perform the pre-checkout tests. Lung function test showed a volume of 50%, whereas during the previous surgery I only had 42% on the 14th day.
Notable Milestones
a. Tubes removed on Day 2 & 6
Re: Thoracotomy - day by day description
wow... read this doc believing it was a description for Dr rolles laser surgery... i must work on my english...
Re: Thoracotomy - day by day description
And like 10 mins after i commented this, i get an e-mail from rolle explaining what im set to go through... and its is this... As you can read between the lines, im very poorly informed... i actually had totally wrong info from my own onkologist. Did research myself, but only on the laser itself, and not on the procedure on how the laser gets into the lung. Was told this was done with laser and a camera down the throat and not as open lung surgery. Well none the less, im still happy to have this opputunityAnders wrote:wow... read this doc believing it was a description for Dr rolles laser surgery... i must work on my english...
Re: Thoracotomy - day by day description
I am curious to find how similar your experience is to mine. Let me know after you get home.Anders wrote:And like 10 mins after i commented this, i get an e-mail from rolle explaining what im set to go through... and its is this... As you can read between the lines, im very poorly informed... i actually had totally wrong info from my own onkologist. Did research myself, but only on the laser itself, and not on the procedure on how the laser gets into the lung. Was told this was done with laser and a camera down the throat and not as open lung surgery. Well none the less, im still happy to have this opputunityAnders wrote:wow... read this doc believing it was a description for Dr rolles laser surgery... i must work on my english...
Re: Thoracotomy - day by day description
I really didnt have any problems. Only problem was i didnt get that thing i my spine... he just couldnt hit the spot, but the pain was managed locally instead, and i would ask for this next time i come again. No skin problems, no nightmares... didnt even get morphine. as it turns out i have some problems with it. My biggest problems where to get sleep... i caughed alot and that kept me awake, and i usually never sleep on my back but im really gonna get used to this for next time. First 3-4 days i didnt really sleep. Got my first nights sleep when last tube ws removed at day 5... but never asked for any pills to put me to sleep... didnt even think about it, but i will for next timeIvan wrote:I am curious to find how similar your experience is to mine. Let me know after you get home.Anders wrote:And like 10 mins after i commented this, i get an e-mail from rolle explaining what im set to go through... and its is this... As you can read between the lines, im very poorly informed... i actually had totally wrong info from my own onkologist. Did research myself, but only on the laser itself, and not on the procedure on how the laser gets into the lung. Was told this was done with laser and a camera down the throat and not as open lung surgery. Well none the less, im still happy to have this opputunityAnders wrote:wow... read this doc believing it was a description for Dr rolles laser surgery... i must work on my english...
Re: Thoracotomy - day by day description
Ah, so without the epidural, huh. How bad was the pain then?Anders wrote:I really didnt have any problems. Only problem was i didnt get that thing i my spine... he just couldnt hit the spot, but the pain was managed locally instead, and i would ask for this next time i come again. No skin problems, no nightmares... didnt even get morphine. as it turns out i have some problems with it. My biggest problems where to get sleep... i caughed alot and that kept me awake, and i usually never sleep on my back but im really gonna get used to this for next time. First 3-4 days i didnt really sleep. Got my first nights sleep when last tube ws removed at day 5... but never asked for any pills to put me to sleep... didnt even think about it, but i will for next time
Also, how long was your surgery?
Re: Thoracotomy - day by day description
Surgery lastet for 3½ h so guess its was rather short. As for pain it wanst bad at all... im gonna ask fro same pain management when i gor get next surgery... I talked to some other danes there... The guy got the epi but after two days they found out it didnt work... ouch.Ivan wrote:Ah, so without the epidural, huh. How bad was the pain then?Anders wrote:I really didnt have any problems. Only problem was i didnt get that thing i my spine... he just couldnt hit the spot, but the pain was managed locally instead, and i would ask for this next time i come again. No skin problems, no nightmares... didnt even get morphine. as it turns out i have some problems with it. My biggest problems where to get sleep... i caughed alot and that kept me awake, and i usually never sleep on my back but im really gonna get used to this for next time. First 3-4 days i didnt really sleep. Got my first nights sleep when last tube ws removed at day 5... but never asked for any pills to put me to sleep... didnt even think about it, but i will for next time
Also, how long was your surgery?
Almost think iwas the test dummy for this new procedure, because the doctors talked about how well it worked and all when they visited me.