Friday, July 27, 2012

My First Week out of the ICU...

   I realized this week that all of my "good" feeling from my last post were attributed to the pain killer cocktail I've been consistantly taking.

Here's the total list of pain killers:
  -Epidural with Naropin (a very effective pain killer, I was scared of this thing in the beginning but I love it now!)
  -Novamin NaCI- (a powerful pain killer that drips right into my bloodstream, it makes me a bit nauseous but works for many hours)
  -Codeine (a good classic opiate but it does always make me nauseous, a side effect specific to me)
  -Arcoxia 120 ( a non FDA approved drug that relieves pain for 24 hrs, sounds scary but it works)
  -Pfizer PGN 25 (added to my collection on Thursday morning, I'll tell you why down below)

    The professor told me today that I they are going to start removing the pain killers day by day starting with Codeine. I also had my first night of RESTFUL FUCKING SLEEP last night, it was amazing. It was the first time I was able to sleep more than 2 hours since the surgery. The sleep meds they've been giving me haven't been really effective (I wake up every hour to 2 hours groggy and in pain just to yell at the nurses for "MOAR SLEEPING PILLS" which they deny me for good reason) so I asked professor Rolle yesterday if I could use my American cannabis oil candies to knock out for the night (since they are edibles and last a few hours they work like magic plus they are naturally made and are waaaaaaaaaay safer to take than prescription sleeping pills). He was totally okay with it which made the other nurses and doctors a bit prissy and uncomfortable ( I enjoyed watching this moment since the professor's word is like god here). I was asking one of the nurses earlier in the week about why they don't provide marijuana to the cancer patients and she said it's a bit old fashioned here but they make exceptions if you bring your own and make a case for it (A past cancer patient was allowed to smoke out in one of the chief's offices since he made a case that he was "addicted" to it and couldn't function without it...the nurse was like "'s like saying your'e addicted to chocolate". I laughed! (which was a bit painful)

    I'll write a summary of the whole week since I haven't posted in a while.

Day 7 - Monday (July 23 , 2012)

    The ICU head doctor signed off on my transfer back to general population ( Basically I didn't need 24/7 care anymore). The ICU nurses told me some of the other patients near me can't even breath without a machine so they said I was doing fantastic in comparison (I think one of they died since Connie and I saw a covered body outside later that day, yikes & RIP nameless bro or ma'am).
I felt good once we were escorted back to a different hospital room (smaller than our original one pre-ICU) but it was all a facade since I was high off a heavy ICU pain relief cocktail. 
    Later that evening, one of the nurses made the decision to lower my epidural dosage, which made it painful to lay down or do any physical activity. Basically, they were treating me like a kid with a healing flesh wound (from what I gather, they rarely get people younger than 50 here). I yelled at the nurse during the night since she refused to give me any pain meds or sleeping pills (She was really fucking bitchy to me about it too, maybe she needs a different career path?). Nighttime Pain level (6/10). Sleep (2 hrs). Overall Weather (hot as ballz).

Day 8 - Tuesday (July 23 , 2012)

    I told the doctors about my pain and lack of sleep the next morning. They educated the head nurse about my situation and how my surgery was very ambitious and major ( I am ASPS patient #10  remember?). The nurses quickly changed their attitude towards me and were not so quick to pull my pain meds after the doctors chewed them out. They were even friendlier to me afterwards. It was a bit scary to learn that the nurses had no idea what was going on with me and that I didn't have the language skills to tell them otherwise. A couple of the nurses were like "129 tumors? That's a lot! But your'e so young!". No shit.
    The nurses rush in around 11:15 to tell me that I'm late for my X-ray, I have no schedule or memory of anyone saying anything, I was confused but complied and went downstairs to the X-ray room (later I learned that Dr. Rolle requested this to determine if a tube can be removed, but nobody told me! Maybe they did but it was in German). After lunch, they gave me more drugs and I felt well enough to watch a movie. Connie was out for a while so I watched Alfred Hitchcock's "How to Catch a Thief", which was a great movie! It was already in my laptop since Connie started watching it on Monday. The exciting parts of the movie got my bowels going again and I ended up shitting for the first time in almost a week! (auspoopen!) It was a momentous but a painful occasion (since it was like shitting diamonds even with a ton of laxatives in my system). I had a piece of paper to track my daily temps, heart rate and poops so I was excited to write my first check mark next to "stuhl"). My parents also sent me flowers with a sentimental letter which made me tear up a bit, it's gotta be hard for them to not be here.
    When Connie got back, she introduced me to the Finnish family that she posted about earlier. The young man Jussi, a 21 year old who has been fighting ASPS for 4 years now. He might be patient 8 or 9, not sure. He's been on a variety of cancer treatments and has it pretty bad. The chemotherapy he had even increased the metastases of his cancer. Dr. Rolle has done 4 operations on him over 4 years and his next step is to do cryoablation in Vancouver, there's another doctor there who has some success with freezing ASPS tumors. 
    Jussi is a big Starcraft fan and was excited to meet a Blizzard guy at the hospital. We talked for a bit and he told me that he reached master league during his cancer treatments last year, I was impressed. If someone from the Starcraft team reads this, maybe we can do something for him? I have some ideas but send me an email if you wanna help out. I wanna do more than just send him some fucking beta keys.
    In the evening, Connie and I watched Casablanca and Galaxy Quest which made me forget about the nighttime pains (as the day goes on the pain gets worse, even with the meds... movies are a great distraction, THANKS to JOHN NEE for Fedex'ing his giant booklets of movies and TV shows!). 
   Connie left before the 10pm lockout and my sleepless nighttime adventure began. I almost finished "Hyperion", each character's back story could be made into a separate movie and I can see how it influenced many of our current sci-fi tropes. I ended up getting some sleep since they gave me a second set of sleeping pills when I demanded them at 1am. Nighttime Pain level (6/10). Sleep (broken up 3 hrs). Overall Weather (still hot as ballz).

Day 9 - Wednesday (July 24 , 2012)

   This morning the professor approved my first drainage tube removal. He thought the 2 tubes rubbing up against my fractured rib cage and damaged lung were the cause of the writhing pain. One of the head nurses came in to pull the tube out and she saw me struggling on the bed and was giving me the "oh don't be such a baby about it attitude" but I couldn't tell her that it was the laying down that was causing all the pain, not the tube removal (which was quick and painless in comparison). It felt great to have 1 tube removed, baby steps.
    I was feeling good enough to play some Diablo 3! I put a few levels on my Demon Hunter and tracked the amount of bandwidth it used since it's super expensive to stream data ( I use the TEP wireless router). Roughly for an hour of playing alone It used up around 25mb of data. Compared to a streaming movie which is more like 250mb an hour or even 500mb for HD, its fairly cheap to play. The Steam auto-patching is also dangerous since that can quickly eat up a gig of data updating all of your games.
    In the evening, we ended up watching Rocky 1 and Revenge of the Nerds (both are great movies) from John Nee's giant DVD booklet. Nighttime Pain level (5/10). Sleep (broken up 1 hrs). Overall Weather (still hot as ballz).

Day 10- Thursday (July 25 , 2012) "The Morning I went to Hell"

    6AM, my epidural starts beeping. The nurses changed out the Novamin tube but it continued to beep so they figured enough was enough and just switched it off (malfunction? weekly schedule? I still never found out). I even thought "hey, maybe I don't need this thing anymore, I was confident since I already experienced a ton of pain" and waited for the non-epidural pain to kick in. I was heading down the road of soberness. I mean, it couldn't be that bad right?
     Holy fucking shit I was wrong. For about 1.5 hours I experienced the worst pain thus far. It got so bad that after about 45 minutes I started shaking and was paralyzed from pain. The nurses thought that I didn't need it anymore since I was so chipper yesterday. I sat there on the edge of my bed waiting...I'm still not sure why, I told the nurses I was in major pain but they left me for a while. It was too painful to really do anything but eventually I started writing my broken thoughts into this tiny little journal the hospital gave me on Day 1. When they checked up on me after delivering breakfast, I was sweating, shaking and non-responsive. I blasted music in my ear to distract my senses from the pain and it definitely helped but it wasn't close to enough.
     One of the more empathic male nurses (the one that gave me my first enema, I never forget my firsts) found me in the exact same position from before and I managed to say "MUCH PAIN !!". He runs out and contacts the doctors to see me ( the doctor team usually visits me between 8 and 9). My normal team of doctors visited me and I couldn't even talk to them (usually there is a conversation about my pain levels, x-rays, breath capacity etc.). They left quickly and brought in Chief Krassler around 8:15AM. At this point, I was staring out the window and I started writing a bunch of crazy emo shit into the journal (the only thing I could do to distract myself). It's a bit depressing to read but it's some of the most honest writing I have ever done. I'm sure this stuff will be used against me someday but who the fuck cares.

    Here is what I wrote on Pages 1 through 4 (word for word & in order) out of 20 Pages:
    (Everything below is unedited and exactly how I wrote it, even the weird capitals & bad spelling)
    Pain Level 8-9 ( I reserve 10 for stuff like a sliced off arm or being covered with oil and burned)
         -Labor (child)
         -wounded military solider left to die
         -Father Hoyt (hyperion)
         -Jesus on a cross
         -shot in the chest
         -writhing pain
         -ecstasy pills
         -Markus (ICU)
         -can't cry (too painful) ( but can tear)
         -Connie would not want to see me like this
         -militaristic ideals
         -shogun warrior
         -show no pain
         -deal with anything
         -suicide would be too easy
         -life is hard
         -come to Jesus moment (me not Christian)
         -want instant gratification
         -writing slightly helps
         -art is too hard now
         -WTF is my pain relief
         -many people probably died alone in pain like this
         -we need more natural healthy remedies (cannabis oils)
         -can't eat
         -holes in my fucking lung
         -cant' stop sweating
         -hard to move 1 inch
         -maybe I need to write more
         -music helps (my own mixes)
         -think of the future
         -this will pass
         -Germany deals with pain relief different than America
         -couldn't sleep last night
         -I need a cork in my mouth (not cock)
         -time moves too slow during this kind of pain
         -hard to fucking breath (it hurts)
         -Goddammit (with a capital G)
         -Samurai Warrior!
         -I can live past this
         -our bodies have high pain tolerance
         -can't write straight
         -Angry at myself for not caring about my body (except superficially)

    Yea, I know its disturbing stuff and now I can relate more to people with major body pains. If I were to summarize the feeling it was like a combination of my ribs/chest area breaking and being on fire at the same time.
    Right after I wrote the stuff above, I thought up some therapy ideas. Trying to problem solve the pain helped a lot. Here are the rest of the pages. It's honest and uncensored. (PAIN LEVEL 9)
Page 5
         Therapy Ideas:
         -stimulate all senses
         -aroma (smell)
         -massage(old guy from Melia hotel)
         -psychedelic Art that move slow (sight)
     oh the pain.............................
         -(taste) (multi-sweet hard gum)
         -pain redirection (touch)
         -think of worse situations
Page 6
         Worse Situations
         -brain surgery (only if they didn't remove the memories of pain)
         -drowning slowly
         -being burned alive slowly
    Quote from "breaking bad" S1
     "I would not do this to my worst enemy."
         -Torture should be the worst war crime.
         -too dizzy to think properly
         -is this what withdrawal feels like? 
         -i kinda hear things
Page 7
         -need more happy moments
         -the world would be a very different place if people endured this pain at a young age
         -Love Connie more (appreciate her)
         -can't cry
         -Samurai Warrior
         -crossing legs slightly helps
         -Games are only effective if the person is ABLE enough to play
         -I need to effect more greater change (Games is not enough)
Page 8 (when Chief Krassler arrived to save me)
         -they are putting more stuff into my spine
         -think shogun
         -I'm not scared anymore
         -I'm really not
         -but to do this again??
         -Cancer is not causing the's the treatements
         -we need better less invasive forms
         -problem solving helps
         -this puts things into perspective...really
Page 10 ( I wrote a bit backwards from 10-9)
         -shaking of hands
         -I feel poetic
         -too much breathing training
         -Dr. Krassler says this means my lung is expanding normally...too much training.
         -Glad Connie didn't see this, I would have yelled at her
Page 9
          he said I practiced too much WTF
          Nurses say 10x an hour my first few days
          Docs say 3-4 x an hour
          Krassler says your lung
          looks great but that
          means PAIN
          (im repeating myself
           memory hazy)
          <3 MY WIFEY CONNIE
Page 11 ( I took notes on what Krassler was telling me, since I couldn't remember things)
         Dr. Krassler says (8:15AM)
         -1 hour go to X-RAY
         -mAybe remove 2nd Chest tube
         -he's going to give me something against depression but its a painkiller
          sounds like MDMA to me which I don't mind.
         -Nurses don't know
          what the fuck is going
          on (even the head nurse)
Page 12
          Pain Killer x 2
          (PGN 25 Pfizer)
         -just took it 
Page 13
         -sniffing my finger helps
         -i want to chew on something, but hard to move.
         -Drawing is too much effort
         -hard to talk & think
         -these are ramblings of a guy
          in Alot of pain
         -I'm getting my massive 
          pain cherry popped
Page 14
         -I' can't tell if im
          getting used to the pain
          (its been 1.5 - 2 hrs
          of this pain)
         -the gardener lady
          outside always wears the
          same flannel to with
          rolled up jeans (blonde)
         -im just a big
          experiment to these doctors
          and I'm a kid to these
Page 15
         -I'll take nausea over
          this pain Any day of the
         -Disco house helps
Page 16
         -I want the new
          drugs to kick in
          faster, but I have
          accepted the pain
        My epidural was beeping
        at around 6AM so 
        they fucking turned it off
         -Should I share this
          on my blog?
         -Will I sound Weak or strong?
         -Fuck cancer & fuck
          me for letig it get this
Page 17 ( the drugs were kicking in and I drew one of the trees outside)
Page 18
             8:49 AM 7/26 THU
         -Meds are starting to kick
         -I was courageous to
          endure such pain
         -Wow I know what
          to expect for the next
         -Im nauseaus but
          thats great (can't spell)
         -I'll eat a banana
          at 9AM (4mins)
         -I drew a tree from
          my window
Page 20 ( wrote backwards again)
         -I am going to start a
          gamer lounge
         -watching cassablanca made
          me wamna do it even more
         -I'll prioritize geek
          types and wont tolerate
         -It will be a HEALTHY
          Social experience
          & want her to support
          and work with me
          ...oozy drugs
Page 19
         -This concludes my
         -I really stink now
          It bothers me
          -Drugs are in full
           effect ( 9:05AM)
------------------------------------------------------------------------------- was a tough morning but I got through it. That's when I realized how much damage was actually done to my body and that the drugs were keeping me "normal". Without them I would be a different person. So I started taking it easy after that, less breath training and more light walking & conversation with Connie. I tend to get excited and overexert myself if I'm feeling great or when I know I have to train towards something (like normal lung capacity).

Goodbye Drainage Tubes
       Afterwards I had another X-ray and the professor approved the removal of my 2nd drainage tube. He said this was probably one of the main causes of the pain. This is when I asked if I can pop one of my cannabis candies to sleep. He was totally cool with it, he just said to take it later in the day when my tube was out and some of the other drugs were wearing off. When the nurse came to remove the tube I didn't even flinch, It actually felt good to lay down with all the new meds & perspective. Everything in life is relative right?

Later that Day!
       When Connie and I were on our daily walk, we ran into the Finnish family again and they were having problems with the 1 internet computer in the hospital. The comp crashed and the tower was probably hidden behind the wall so we couldn't reboot it (srlsy, 1 computer with a coin-op wired internet connection? But this hospital has the most modern laser surgery tech? C'mon!!!!). I offered to let them come into our room with their laptop and use my 3G WIFI to buy their plane tickets back to Finland. My 1 good deed of the day after my revival. I was still pretty high off the new drugs but I just wanted to take it easy...pain takes a lot out of ya.
       My ICU male nurse friend Markus came to visit and followed up on his offer to take us to a nearby castle with his girlfriend (early next week, Monday/Tuesday). I told him as soon as they wean me off the epidural and I become wireless again, I am down to go! It was good to see him, he was the best nurse so far and really cares about his patients. I think he was happy to treat a patient near his age and that he could talk/relate to.
       Later in the day, Connie and I watched Finding Neverland ( I teared up even tho I've seen this before, great movie) and started Little Miss Sunshine (great so far). Around 10pm closing time, I took my cannabis candy and SLEPT LIKE A FUCKING BABY. The nurse actually had to wake me up for the first time! It was great. My first restful night. Nighttime Pain level (1/10). Sleep (6 hrs). Overall Weather (still hot as ballz).

      Well, this was an extra long post to make up for this week. It's been a roller-coaster ride of pain but I think I've been down the biggest scary drop. They are weaning me off the meds now that both tubes are gone and maybe I will be down to just oral pain killers early/mid next week. If you have read this far, I commend you. You probably know me much better just by reading this shit. I'll post again once I've gathered more data between now and next week. 


  1. Yeesh, what's up with all the trying to remove painkillers so fast? Bad nurses :( Otherwise, glad to hear you are recovering KKG!

  2. Crazzzzzzzzzy. Hope you're feeling better soon dude. Ill see if we (team 1) can get something together for Jussi. Keep strong!

  3. And btw you're an inspiration. Way to handle that pain. Not to compare childbirth, which comes naturally with all sorts of hormones to help the mother out in dealing with pain and fatigue (although you did list birth labor in your blog), but when I was laboring with pitocin and no pain meds I had some of the exact same thoughts you had. Military war crimes & torture (and the fact that if someone wanted to extract information from me they probably could at that point), doing something bigger and better for the world, and how I wouldn't wish this feeling of pain on anyone ever. But I'm babbling now. I guess I wanted to say thanks for giving us a glimpse of just a fraction of what you must have gone through. Take care K and looking fwd to your next post. Congrats on making it out of ICU btw. I can't believe you managed to get cannabis candies on the plane :D :D :D

  4. Kevin, hi, I am Ivan's mom Olga - lurking here reading your blog. It is strangely attractive to me after we were trough the same shit 5 times already...
    Some comments:
    1. You might be less sensitive to the pain killers since you are used to use the cannabis candies for a sleep deprivation. I am speculating, though - ask Dr.Krassler if he can connect the dots.
    2. There is a major nerve coming around in the incision area called intercoastal nerve. It gets very disturbed and inflammed by the incision and by the tubes, I hope the pain gets down as the area around heals. Right now it screams as hell that there is a break in you chest to let you know. In case you didn't notice. If it keeps acting like that, let me know, Ivan had that very bad on one occasion and it was fixed by a specific med, I'll explain later if it is needed. Hopefully it will be not.
    3. When the epidural was beeping there probably was a break of the line. These lines are extremely thin and fragile, can not be maid thicker as its main advantage is being thin so they can be used inside of the spine. Nurses can not usually do anything about it, only docs. Wrong move and your legs might get paralyzed. So they switched it off. Your main lesson from this situation - if you are in pain, scream, forget about the manners - there are better places to use them.
    4. You have listed the brain surgery as one of the worst pain situation - wrong. It is usually a very low pain surgery. When the emergency brain surgery is done to debulk the brain mets, the preceding to it pain from the compression inside of the brain is so bad that people say that the brain surgery was a big relief not the pain. (Do not want to scare you though, but the goal of the ASPS patient to find if he is really damn get these damn brain mets when they are damn small enough to zip them by the radiosurgery - 1 shot and the met is gone if it is 5 mm).
    Thanks for talking to Jussi. I hope he gets the general idea that ASPS Dx isn't only given to teen looser to punish them for the dirty toughs and that you can have ASPS and be smart, sporty, loved and happy.
    Do you want to repost all the good stuff you write on the cureasps after you are done in Coswig?

  5. Hello everyone, this is 'ASPS Patient #1'.

    Grace Liu

    You want to get off the meds. They relieve the pain but they make you feel like shit nevertheless. What happened to Kevin is that he got taken off the epidural before his chest tubes were out. The inside of the lung and the chest wall are very damaged. The tube is a foreign object that's applying pressure to an open wound of a very large size. This never happened to me.


    Do they not offer you Oxycodone or similar anymore? That's what worked best for me. Even 10 mg of that was quite effective. I think the most they ever gave me was 2 x 20 mg in the ICU.

    I never experienced the pain that you described on a sustainable basis. I'm guessing the worst would be a constant 8 in the ICU. I did feel 10 when I had some nerve pain after a thoracotomy for a pneumothorax. It felt like a big knife was jammed into my abs, and it was being twisted as I tried to breathe in. Got some gabapentin for that, and it went away completely until the chest tube was removed and this pain disappeared.

    By the way, do you realize that you can now brag about being the world record holder for a number of mets resected from a lung during a single surgery?

  6. Thanks for clarifying things Ivan as well as sharing your experience. Hope you are doing ok. Our thoughts are with you as well!

  7. Grace Liu

    No problem. Yes, I am doing well. I've been playing this game for 10 years, and at this point I am winning.

    I had 85 mets removed in my first surgery, and Kevin had almost 50% more! Maybe this is why his recovery sounds tougher than mine was.