Tuesday, November 27, 2012

Last Day at the Hospital...

Heya folks,

     First off I have to say that this trip has been wonderful compared to the last. What makes it so great? It's the cold weather, more/better pain drugs and the ton of movies, games and TV shows to keep me occupied as well as having great conversations with some of the cooler hospital staff (the days went by fast, hence the lack of blog updates!). The nurses were much friendlier this time and I learned that it's because they had an internal audit a couple months back which affected many of the nurses and their attitude towards patients that pay out-of-pocket (which has been a problem in the C ward before I was even a patient there).

     We also made friends with a physical therapist, an ICU nurse, a newer C ward nurse(the gamer) and one of the newer doctors who operated on me who offered to hang out with us sometime during our last 2 weeks here. They are awesome people (who speak English) and we look forward to hanging out with them in Dresden and get a less touristy view of Germany (since they know all the cool local spots) and as a bonus I get to learn more about the hospital and what goes on during my surgery. Since I might have to come back here next year it's worth it for me to treat this like a second home.

Visiting the sacred operating rooms

     I've been asking Professor Rolle to show us his laser/operating room since I'm morbidly curious about what happens during the 5-6 hours where I am knocked out and since this is my second operation here I felt inclined to at least ask. He offered to let us see the operating area this morning so we accompanied the awesome doctor I mentioned earlier into the surgery area. Connie and I were split up since the male and female changing rooms are separated so I hung around waiting for someone to let me into the male area until a random nurse finally opened the door for me. I waited in the changing room until one of the doctors got really upset at me for being there and kept saying " no patients in this area, only staff, please leave." I was like "buuut Professor Rolle said its okay." The doctor kept telling me to leave and to tell the Professor when he arrives (he was on his way there). I ended up leaving the room and was quickly greeted by Rolle who let me back into the room and showed me how to put on the surgical scrubs which are needed to get into the sanitized area.
     Connie and the other doctor were already on the other side and she gave us a tour of what was happening in both rooms. I was expecting to see an empty operating room but we got to see 2 procedures in-progress!(one person was getting prepped and the other was undergoing surgery) There are a total of 2 main operating rooms in the hospital and they are similar to what you would expect from watching hospital dramas and movies expect for the automatic giant metal sliding doors which are foot activated and portable laser machines (yea it's pretty high-tech and awesome). There are also a bunch of people in the operating rooms working on different tasks (a mixture of doctors and nurses) just like in the movies. We were able to tell that our presence upset the staff but since Professor Rolle was there nobody said anything. The doctor that yelled at me earlier even apologized saying he didn't know that we were "allowed" and that he was only being cautious. I was thinking "Yea, that's right we're cool with the professor so step aside". It was also comforting as a patient to know that the staff here take their work so seriously. I mean would you want random untrained people showing up while you are naked and passed out being cut into..who knows maybe?
     Our visit to the operating rooms was short but it was an awesome experience nonetheless, a great finale to our hospital stay. Goodbye Fachkrankenhaus Coswig! We leave early tomorrow morning and are heading to a farmhouse/hotel near Dresden that John Nee booked for us (Thanks again John!). It's 3 bedrooms so if anyone is in the area and wants to visit we have plenty of extra beds for you.

Professor Rolle gave us this print of his involvement in laser development. He's been making surgical lasers since the 80's, that's pretty fucking legit to me.

Here's me with another smiley face on my side.
 I only need a scar going across my mid section then I'll look like I've been cut in half.

Tuesday, November 20, 2012


Hey All,
Fuuuuuuck, It's been 6 days and I've made it through another one of those damn surgeries! I am feeling good enough to post and since Connie did a great job blogging about the events that transpired I've decided to keep this one short and positive. To quickly summarize, my recovery is faster than before but it was more painful right after the operation. Not only was my epidural line only in for 3 days (down from roughly 8 days the last time) I was out of the ICU a day earlier and I am able to walk up a flight of stairs (barely) almost a week early since I'm not attached to a large & annoying epidural charging station. I still have 1 chest tube which is going to be removed today so that should also significantly reduce my overall pain levels. I have also resumed my lung rehab regiment which includes the salt/mineral inhalation and pressurized breathing multiple times a day. My staples were also removed as I was typing this paragraph by a new nurse who is a big gamer and Diablo 3 player. He said he knew about my fundraiser before I even got to the hospital! GG viral interwebs.

Oh yea they ended up removing over 120 tumors from my left lung.. So within the last 4 months I've had over 250 tumors removed from both lungs! Holy shit that's a lot apparently...
If it wasn't for Rolle's laser I would only have the option of using the TKI chemo drugs or finding other alternative treatments. I am still searching for other long term solutions so if you guys come across something please send it my way...snake oil, basilisk salts? Sure I'll try it.

Entertainment: Final Fantasy Tactics (IPAD), Boardwalk Empire (TV), Endymion by Dan Simmons (audiobook)
Therapy: Mindfulness Meditation for Pain Relief by Jon Kabat-Zinn (audiobook), Full catastrophe living by Jon Kabat-Zinn (audiobook), Bhang Bars & Cannabis Jolly Ranchers (cannabis candies, great for sleep and relaxation)
Temperature: Cold as Ice and I love it. All I have to do is open up a window for a bit and it soothes my soul.

Some Pics for your enjoyment:
Mustache and my neck line (see the stitches about to pop out? yea this is in my fucking neck and hooked up to a major artery)

Both Chest tubes! Yea this shit is going into my lung (upper and lower lobes, hopefully by tomorrow I will have none)

Thanks for reading,

Saturday, November 17, 2012

Out of ICU!

Hi all!

My first blog post for the trip! I also want to thank everyone for their wonderful generosity with regards to our fundraiser. Seriously, you guys are awesome. We both have been saying that at any time we are feeling down, we just have to look at our fundraiser page and read the messages of love and support posted there, to remind us that we are not doing this alone, our friends and family love us, and that we can totally do this. We will get through this, one day at a time, and no matter what happens, you guys are here with us. So thank you all, for giving us the strength to deal with this cancer.  

So great news, Kevin was moved out of ICU today, which means we are back in gen pop with our own room and can set up our internetz and laptops. It was harder to do that this time in ICU, as Kevin had roommates, first two older men and then a woman. But I'm getting ahead of myself. The main thing you need to know is--Kevin is out of ICU and doing well!

We got in on Monday night and went straight to the hospital. Normally, flying leaves me feeling grumpy and exhausted, but for whatever reason, I felt great when we arrived. Germany is beautiful this time of year! Well ok, Germany is just a beautiful country, end of story, but we both like the weather so much better this time of year. The air is crisp and cold, and the wind smells of comforting things--cozy fires, fallen leaves, and savory stews!

Tuesday, Kevin had his tests. He feels like an old hand at this now, and we know many of the nurses and doctors now. It's funny, we've both remarked on the very noticeable attitude change from the hospital staff, especially from the gen pop nurses, who can be bossy. I think they thought--when we came here last time--that we were two punk American kids mucking up their orderly hospital floor, but since then I think one of the doctors on our case must have mentioned something about Kevin's condition to the nurses, because they've been much more kind and gentle with us this time around. After all, this surgery is no fucking joke and to have a second one on the heels of the last one must say volumes.

Wednesday, Kevin went into surgery. No freak outs for me this time. I just went back to my dorm room and passed the fuck out. It's been so crazy getting everything together for the trip, plus dealing with the move, that it was a relief to just sleep. Honestly, the weeks leading up to this second Germany trip were far more exhausting, stressful, and anxiety-inducing than dealing with this surgery a second time. I want to let Kevin talk about the big decision he made, but at one point Kevin was considering not getting this surgery at all to pursue a different course of treatment. The stress of making such a big decision, plus the fact we had just moved, and on top of that other family medical emergencies...

I don't mean to complain, especially now that it's all over with, but at one point I felt like some divine being was having a big laugh torturing us. Everything is ok now, but right around Halloween I thought I was going to completely lose it. A big thank you to all my awesome friends who walked me off the metaphorical ledge and got me to this point, with my sanity more or less intact. I've realized so much of this experience has been learning to give up foolish pride and admit that I'm not doing ok. Or realizing that sometimes I can't do it all, and that's ok. No matter who judges me or even if anyone is judging me at all, it shouldn't matter. All I can do, is do my best and be ok with it when people don't understand. It's been very hard but hey, that's why we keep this blog. Keep it honest, yo.

But enough of that. Knowing the drill made it easier to find Kevin after the surgery. I marched straight to the secretary's office and asked her to help me find Kevin. They didn't let me see him at first, because of the other patients in the room, but after a while they let me come in. I could tell the surgery was worse than before, because he was twitching and moaning, instead of the drugged stupor of last time. Prof. Rolle and his entourage of doctors stopped by, and he said the best thing was to let Kevin sleep. I rubbed Kevin's legs for a bit, which seemed to help distract him from the pain, plus I've been told that it helps with recovery. The room was very busy, with three patients and nurses coming and going, but I sat with Kevin while he slept for a few hours, until his nurse very gently kicked me out.

On Thursday, I felt that Kevin had improved noticeably from the day before. He was sitting up and was much more lucid, though he was still very nauseous. He always has problems with morphine, which is what he was primarily being given in ICU, so he was having a hard time keeping anything down. The pain was worse than the pain of his first surgery, and we repeatedly let his doctors and nurses know, but they didn't seem to think there was anything to be done. He improved as the day went on and by evening, they had switched him off the morphine to something else. I read several chapters of Divergent to him, which feels like a different flavor of Hunger Games (though not in a bad way at all). I plan to introduce poor, unsuspecting Kevin to all the lurid YA out there. He must partake of the cotton candy of the literary world, especially since I doubt I'll ever get him to read British murder mysteries, my other comfort reading food.

Friday is the day I locked myself out of my dorm room. I had visited Kevin earlier, his two roommates had been replaced by a lone female patient who stayed asleep the whole time I visited. As usual, Kevin was having problems sleeping at night, a fact that is exacerbated by jet lag and post-operation pain. Even I'm still going strong at 3:00 am in my dorm because of the jet lag. Kdramas and DS games, FTW! I ducked out after lunch to cook some of the groceries I had bought, and in the process, left my dorm keys in my room. The wind blew my door shut, and I discovered it was one of those lock-on-closure doors. Damn. Wearing pajama pants and slippers, I raced across the courtyard to the hospital reception area (it was still only 5:00pm or so) to see if they had spare keys, or anything. No such luck. The receptionist spoke a tiny bit of English and I spoke my tiny bit of German, and we managed to work it out. The power of sign and body language!

While I was waiting for the hospital handyman, I decided to duck upstairs to ICU and check on Kevin. The ICU nurse Mathias made fun of my slippers. Kevin was sitting up eating, but he complained of a weird scratching sensation on his back. Mathias and I took a look and his epidural line had fallen out completely!! I wonder if that was the reason he was in so much pain...

While we were examining his epidural line, Kevin was freaking out, for which I don't blame him. The suicide-inducing pain from last time was because his epidural line had broken. It was past 5:00 pm and apparently Chief Krassler was already gone and I didn't possess enough German to understand why Kevin's epidural couldn't be fixed. While we were fussing over the epidural line, Mathias suddenly noticed Kevin's wrist vein tap had also come loose and was spouting blood all over Kevin's gown, his sexy surgical stockings, and the blankets. Egads, what an evening it was turning out to be. One of the nurses joked that maybe the vein plug in Kevin's neck should come loose next. It does hang at a very precarious angle...

Finally, Kevin and I decided we would try calling Chief Krassler ourselves, rather than run the risk of Kevin enduring the excruciating pain of last time. However, as fate would have it, just as I was dashing out of the hospital to get my cell phone (which was the one thing that wasn't locked behind in my dorm room) I passed by Chief Krassler, who was on his way back in. I'm not sure if he was called back for another patient or whether our nurses called him, but mein Gott, it was good to see him. Long story short, no more epidural for Kevin. But they removed one of his chest tubes, which apparently is one of the main sources of pain, since every time Kevin breathes the wounded lung rubs up against it. I stayed with Kevin until closing time, to make sure the alternate painkillers he was being given were sufficient, but it looked like they worked. He and I texted back and forth till late that night...I pretty much polished off Heartstrings (AKA You've Fallen for Me). I cried a lot in the last two episodes, but not as much as when I watched Boys Over Flowers.

And now we arrive at today, Saturday, with Kevin being moved to gen pop! The nurse Karla remembers us from last time and has been extra kind to both of us, though unfortunately the pain management regimen is much less efficient than it was in ICU. Other than the pain, Kevin is able to get up and walk around on his own, he's been eating regularly and hasn't thrown up, and has already begun lung rehabilitation. We will probably be here for another week and a half, before we move to an awesome country farmhouse we found on Airbnb, less than a kilometer from Dresden proper. Did I mention how much I love Airbnb? So much cheaper than any hotel we could hope to find this time of year (most of the hotels are booked and/or are very expensive this time of year in Dresden.)

Welp, that's it for updates, thanks for reading everybody. I will continue to keep you guys posted. Definitely a better trip than last time, on many levels, as long as we can keep Kevin's pain levels manageable. Who knows, I might even get some writing work done *gasp*

As they say in Germany, tchuss!

Tuesday, November 13, 2012

Surgery Tomorrow and Thanks for the moneyz!

Thank you all for the moneyz and lovez.

First off I have to say “OMG WTF holy shit” to reaching our fundraiser goal within 1.5 days of the giveForward site going live…The original idea was to reach the target by December 15th and to coincide with our Germany trip/operation but I guess that was a gross underestimation of the power of crowd sourcing. Thank you to everyone who either donated money or spread the link around. I would have never reached the goal so quickly if it wasn’t for you all. I was pleasantly surprised to see that it made it on reddit and some of the comments totally made me laugh (the health care debate and the cancer troll/anti-troll battles were incredible). The thoughtful comments/hugs you left me are really something special. I have a hard time keeping my tears at bay when I read the messages some of you posted.

Back at the Fachkrankenhaus hospital in Coswig

It’s kind of weird coming back to a hospital routine only 3 months after originally leaving. It feels like my time back at home was a dream and my reality is to be in this hospital recovering from some operation. I did accomplish a lot in 3 months (we moved, a lot happened at work and I resumed my gym routine of running and yoga) but it is a bit disheartening knowing that I have to re-level my damaged body backup yet AGAIN. One big improvement is the temperature. It is roughly around 40 degrees F. which is amazing. This not only makes sleeping easier but it makes hanging out in the hospital room a much more pleasant experience.

My operation is tomorrow morning so I am fairly nervous, less so than before but I guess it’s normal since it’s a pretty major procedure (5-6 hr long thoracotomy, fun fun). It’s also strange being very familiar with the hospital staff and the strict time tables for all the tests (go German efficiency). This time the nurses are treating me much better (I know many of them by name now) and I bet that it’s also strange for them since I have returned so quickly.

My pre-surgery Tests and Results

Earlier I finished doing all the lung function tests and my pre-surgery CT scan, same as before (lung capacity tests while sitting in a small glass box, breathing through a tube while riding a bike and having blood samples removed from my left ear). The results were apparently great! That’s good news since after the tests the last time they thought that there was an issue with my heart, which ended up not being the case.  

Chief Krassler & Professor Rolle told me that my lung function results were better than what it was before my last surgery…which is AWESOME since I was afraid I would lose some noticeable lung capacity after a major procedure like that (the power of the pewpews). I would be willing to bet that a combination of my new diet/juicing routine along with my new meditation/yoga habit has something to do with it.
When I mentioned the pain issues I had before Krassler brought up a few solutions:
My epidural was not working properly the last time so he is going to try a new spinal position.  He is also going to give me stronger pain meds and keep me in the ICU a day longer than before! (Yay for extra care, the ICU is awesome compared to the normal ward AKA gen pop).
All this plus the colder temperature should make my recovery much easier than the last (trying to stay optimistic here).


I will probably not be posting until a few days after the operation since I will be UNWELL but I figure you guys want to get your money’s worth so I might be posting some extra gruesome  post-op pictures to compensate. Goodbye everyone and see you all on the other side (of my anesthetic nap).

Friday, November 2, 2012

Preparing for round #2 and my first fundraiser

Hey all,

It’s been about 3 months since my last post and now that I’m fully recovered it’s about that time for me to go back for my left lung resection. I know what to expect this round so my anxiety levels are not as high as before but the idea of going through that very rough...and painful recovery again still sucks (but I hear its much easier the second time, we will see). I leave for Germany on November 11th and will be back in the US mid-December…I won’t be starting work again until late December or most likely the New Year.

The last 3 months has been quite the roller-coaster ride since I had to make the tough decision to continue with surgeries rather than “trying” out these chemo drugs called TKI’s (tyrosine-kinase inhibitors). There has been limited success with these drugs and the potential for lots of really bad side effects including death. Even if the drugs are successful my body could develop a tolerance and a “rebound” effect could occur which causes the tumors to grow and metastasize at a faster rate…which would put me in a much WORSE position. My friends on the cureASPS.org forum have helped me make this decision since many of them have had long term success going the surgery route. That's not it, I've also been worrying about my dad who has been physically and mentally ill due to a number of factors and I am trying to be there for him so he can quickly recover and BE THERE FOR ME DAMMIT.

Fundraiser time!

My friends/family have been asking me for a way to help out and I’ve been telling them that I am going to throw some kind of a big fundraiser…but that is a lot of work since it’s a big event that needs to be planned and organized (which I am not opposed to doing, it just requires more time and energy than I have right now). So my boss Chris D. sent me some great links to a few kickstarter-like fundraiser websites that I could easily put together and share through facebook & email (making it as easy as possible for people to donate). I picked Giveforward due to its simplicity and intuitive UI plus it’s mainly focused around medical conditions. Connie wrote up a great bio for me and we are launching the site alongside this blog post.

So here I am, shamelessly asking anyone who has some extra cash to help me out since this cancer is eating up our funds rather quickly and this is my first step towards getting over my reluctance to ask people for assistance. If you are currently struggling with money please do not feel obligated to donate since we have financial back-up measures in place in case our situation gets insanely bad.

Here's the link:

Where is this money going?
-operation costs (since insurance is not a sure thing)
-travel costs for treatment (flights, hotels and food)
-co-pays (frequent UCLA visits)
-non-FDA approved chemo drugs (Tyrosine-kinase inhibitors, if and when I start)
-ingredients for juicing/blending (organic vegetables, fruits etc.)
-supplements (vitamin C,D, fish oil, calcium, mushroom pills etc.)
-any extra money will be saved an go towards future treatments and diet (since eating healthy is expensive)

So what else am I doing for my health?

I have been religiously juicing since I got back from Germany (2-3 times roughly 80-90 ounces a day)
   My current juice diet (greens and carrot heavy) roughly 90 ounces a day (3 times daily)
-beet with leaf
-kale, collard greens or rainbow chard  (or all 3!)
-lemon or orange
-1-2 small apples
-ginger (small chunk)
-organic omega-3 fish oil (barleans or carlsons)

This recipe changes every week since I am trying to remove sugars from the juice (ex. I used to put in many apples, oranges and pears, but now I am down to only a couple fruits).  My next step is to lessen the carrot content since they have sugars as well….so yes NEED MORE GREENS.

I also rarely eat meat and sugars now and I try to stick to things like salads and vegetarian Asian foods. For snacks I eat kiwis, bananas and apples and I make my own trail mix comprised of raw organic cashews, almonds, walnuts and dried cranberries.

For exercise I have been doing Yoga twice a week and an outdoor 4-5k jog once a week and I’ve developed a habit for mindfulness meditation every morning ( I can do 15 minutes now, up from 10).

Last but not least, I have been seeing a great psychologist who really got me into mindfulness and is helping me deal with this cancer better and fight against depression. 

Thanks for reading, my next post will most likely be from Germany.


Tuesday, August 7, 2012

Going Home

It's been three days since we got out of the hospital in Coswig, so I thought I'd write our last post before we come back home.

Home. That word sounds so good. I miss all of you, I miss my dog, I miss my house. I miss the routine of work, of being productive. I've done some scattered writing work here and there, but for the most part, it's been eat, sleep, read, spend time with Kevin, eat, sleep, read.

Since leaving the hospital, we've been staying at the charming Hotel Steigenberger in Dresden, overlooking the Frauenkirche Square. We ate here before we went into the hospital, and enjoyed the food and the view so much that we resolved to stay here, should we get out of the hospital early. So here we are!

The last few days has been uneventful. Mainly, we've been taking it easy and resting in the hotel room. It feels so good to be out of the hospital, plus Kevin needs to take it easy because of the pain. They deal with pain management differently here; the doctors were somewhat reluctant to give Kevin any painkillers but they issued him a box of Novamine before we left. A good thing, too, because it's been hard on poor Kevin.

I've said it before, but I'll say it again. Thoracotomies are painful surgeries. It's been hard for Kevin and hard for me to deal with it. I can't pretend to understand the pain Kevin is going through, and I think the pain might be especially bad because of the extent of surgery on Kevin's lung. Despite knowing this, it's hard not to be impatient with Kevin, to try not to say "Look! I know it hurts but you just have to deal with it and move on!" That's very easy to say for someone who is not in pain.

At the same time, I don't want to baby Kevin. Plus, I am not known for my patience or my tact. Not just that, but pain, like many other things, only grows worse if you become fixated on it. It's been a personal challenge to be patient and compassionate, yet not allow him to obsess about the pain. The more he thinks about it, the worse he gets, and he's even adopted pain-driven habits like lilting to one side or holding his arms affectedly to keep from jogging the painful side. I'm torn between wanting to let him deal with the pain in his own way while also wanting to push him to focus on things that will help him recover, like walk around or not talk/think about it.

Our first day back in Dresden, when I woke up I found him curled up dejectedly in an armchair, next to an open window. The A/C wasn't quite working in our room, but instead of dealing with it, he just moped in his chair. When I asked him how he was, it was about the heat and the pain. I got angry with him, then. I was tired of hearing about the heat and the pain. If the goddamn A/C wasn't working, then call the goddamn concierge. If it was too painful, then he could have asked me to do it for him. If the pain was too much for him to handle, then we needed to go back to the hospital. It started in anger, but at the core of it I was scared at seeing Kevin like this. We ended up having a good conversation that day. I wasn't and still am not very good at expressing myself in a non-confrontational, non-aggressive way when I'm upset, but in the end, I just care about Kevin and don't want him to let this disease or the pain get the better of him.

Kevin always reminded me when I came home bitching about work or someone I had personal conflicts with that life was just a series of problems. A designer won't agree with you? Well, then think of it as a challenge. How can you avoid conflict and achieve a solution that will satisfy both you and the other party? Want to throw a massive Bill and Ted-themed party for hundreds of people? Then draw up all the "features" you want, and figure out all the different problems you need to solve. Figure out how much help you'll need, the cost of items, who can supply ice, who is willing to DJ. Yeah, sure, life isn't that simple sometimes and I like to throw pity parties for myself as much as the next person, but in the end, I always have to ask myself, do I want to rage over someone who makes me upset, or freak out about a big task I've taken on, or be miserable about a situation I'm in? Hell fucking no. I'm going to put my problem solving hat on and do or die.

Pain is just another problem we have to solve. Luckily for us, time will eventually make it better as Kevin heals up, but that's not to say it won't come back. After all, there are more surgeries in Kevin's future. I am so glad we had our honest conversation about this.

We've continued to take it easy, been watching lots of movies in our hotel room and walking around beautiful  Dresden, but goddamn, I am looking forward to coming home. It's strange to think we've been in Germany for a month, now. I like reading FB feeds when we can spare the bandwidth, and seeing how all of you are doing, but I'd much, much rather see you all in person, and hear from you directly what you've been up to. I feel like for a month we've been shut up in a cancer capsule and launched into German space. It will be so good to be finally, finally, home.

T-minus 2 days. See you all soon.  

Wednesday, August 1, 2012

My Final Week in the Hospital!

Hey All,

      This week was great since I am now wireless again! Yea, no more having to wheel around my spinal epidural painkiller. I am still trying to break my mental conditioning of looking for wires whenever I have to get up and feeling tethered to something. I am finally only on oral painkillers and have been feeling much better about moving out and about (stairs still make me tired like an old man).
      Monday was the day my epidural was removed so I walked with Connie to the nearby "kaufland" market which was a great workout for me and the short lived rainstorm at the nearby food stand (German speaking Asian guy making Asian foods) was a great bonus. This was also my first non-hospital meal since my surgery (mmm grilled veggies with sauce and white rice). My pain levels were very low and only spiked occasionally (mainly when I stretch/move too much). Jussi also flew back to Finland this morning and has to fly to Vancouver, Canada in 2 weeks for cryoablation removal of more tumors. I might also have to do this in the future, we will see how far a consistent aggressive anticancer diet will take me before the cancer makes the next move
     Here's a pic of my delicious scar after they removed my bandages:


Tuesday (July 31st, 2012) was the first day since surgery where I left the hospital area and forgot about my giant cut.

      Here is a pic which sums it up ( Yes, beer is a great painkiller!) Bier von Fass!:
Our ICU nurse friend Markus took us to see Moritzburg Castle which was about a 15 minute drive from the hospital. http://en.wikipedia.org/wiki/Moritzburg_Castle
This castle was the real house Baratheon (if you get the Game of Thrones reference). It was completely themed out with stag heads (with different metal designs wrapping around the heads) and it was an epic hunting lodge for Augustus the Strong. http://en.wikipedia.org/wiki/Augustus_II_the_Strong

      Here are a few pics of the day, I can't post many since bandwidth is freaking expensive:

It's comforting hanging out with an ICU nurse, he can resuscitate me if I fall or something.

Connie found a doggy.

Epic street shot from the Castle.

Connie running through the epic garden before the hunting grounds.

iiiiiiii'ts Connie!

The castle is surrounded by a large moat.

The castle is also surrounded by great pubs.

A description for tourists. (Wikipedia is better)

Connie and I sitting, Markus took the pic.

9PM Sunset view from my hospital room.

The doc told me today that he is discharging me this Friday! Which is great since we can enjoy a bit more of Germany and I can finish my recovery outside of the hospital. Painkillers to-go please...aaand after one of the head nurses adjusted my wound with her finger and patched it up, she told me that I can take a real SHOWER!!!!!! Which I am excited to do after this post.

      Thanks again to everyone who has posted comments and useful information. I am also honored to have Ivan (ASPS patient #1) and Olga posting on this blog. They have experienced this procedure/hospital experience multiple times and their posts on the cureasps.org forum have given me much hope when I was feeling down about the scary Thoracotomy.

Sunday, July 29, 2012

Getting Lost in Coswig

Thanks for all the support, guys. I appreciate it, we both do. I think being able to write stuff down in this blog also helps a bunch, though I was feeling pretty embarrassed and sheepish about it afterwards. But Kevin was like, "WTF, we've been through cancer and you're feeling shy about a blog! C'mon! No shame!" and I was like, "You're right! No shame!" But thanks all for the kind words.

Since Kevin was feeling a lot better, I decided to take a ramble about town. Since we've been mainly posting grisly things about cancer and surgeries and being mentally bummed about cancer, I thought I'd write a normal, boring post about what it's like here and insert some photos so you guys can have a glimpse of what it's like here. (Ps: I uploaded the photos as an album on my FB, so apologies if these are dupes of what you've already seen)

I don't know jack about Coswig except that it's close to Dresden and has a hospital that is the leading center for thoracic surgeries. Also, the cafeteria (kantine) food is pretty decent as hospital food goes, but it's closed on weekends. I've already decided that I am going to eat a butt load of sushi when I get home. Kevin (the human, not the cat) concurs.

The heat finally let up, which not only improves the environs, but also moods. I woke up early, did 45 minutes of yoga in my dorm room, did another round of laundry for Kevin in my shower, and made myself yet another bread, pate, and salami sandwich in my room. I even went so far as to add some cucumber slices. I am going to miss super cheap, delicious pate when I go home. Also, I am getting better at doing laundry by hand. Being a pampered suburban brat, I have never done laundry without the aid of a machine. Also, Kevin is extra stinky. I don't call him my stinky tomcat for nothing. The first load (whites and grays) turned out okay but now that I am less pissy about doing laundry ("What? I have two degrees, speak three languages, am a games industry professional, and you want me to do... laundry!? You'll pay for bandwidth but not laundry service???" I keed, I keed. I was joking. Mostly.) I was determined to do better with the next load. The trick is to pre-scrub the stinky areas with bars of soap, rinse, then stir and soak with detergent, and then drain and rinse/soak a third time in clean water. It also takes FUCKING FOREVER. In my book, washing machines are now up there with air conditioning, the internet, and iPhones.

Then I started off for the hospital to see Kevin, a very short gravel/cobblestone walk through a bit of forest. Kevin's down to 4.0 on his epidural painkiller, which is really great progress. They also stopped one of his oral painkillers, the crazy effective-for-24-hours-and-not-approved-by-the-FDA-in-the-US one. He's feeling it a little bit, but not anything like what we experienced earlier this week. Thank the stars aligned for that.

I think being at the hospital has made both of us pretty antsy, but unfortunately Kevin is stilled tethered to his epidural. However, with the weather having cooled down, Kevin was feeling up to a nap so I thought this was a good opportunity for me to get outside and work out some of the anxiety I've had from being cooped up for the last week or so. I'm hoping Kevin can join me later this week!

I grabbed my Trader Joe reusable shopping bag (something I'm going to recommend on the guide I'm working on for English speakers who come to this hospital for similar procedures) and set off for a mild adventure. There were some ominous clouds looming ahead, but after about 2 weeks of being here, I realized the weather is very similar to Japan. Liable to change at any minute, but with the way the winds were blowing, no rain shower was going to last longer than 10 minutes.

Once I got out of the main road leading up the hospital I just turned down a side street and started walking. My vague goal was to get lost in the suburban area near the hospital, using the church spire we could see from our hospital room as a directional guide.

 I took this shot with my iPhone after I'd been wandering towards it for a while. I found the railroad tracks and followed the path next to it. I suppressed to urge to play with several dogs on the way. I think several of the people around here think of me as the crazy foreigner who speaks no Deutsche but lavishes affection on their dogs.

The area is really lush with greenery, especially this time of year. It rained nonstop when we got here and was actually a bit cold (SF cold) before it turned muggy and hot. Most of the homes in the area seem to have gorgeous gardens. Here's a sassy, splendid example:

After picking my way through several apartment buildings, I ran into a freakin' sweet playground. It had all sorts of cool structures to climb up on, including a well with a chain ladder that you could climb down into, a bridge made of logs that was actually pretty sturdy, and some wigwam-looking structures.

I feel sorry for Irvine kids with their plastic, child-safe playgrounds, in boring sand.
After threading my way through more apartment buildings I stumbled onto what seemed to be the main street. But it was Sunday, so almost everything was closed. Except for a schwarma place. With the cafeteria closed, I bought me some foodz for lunch/dinner and continued onward. I also bought a very interesting salty yogurt drink. Hm.

Meanwhile, I kept trying to make it towards the church spire.

Got sidetracked by a boarded up old building that looked interesting purely because its windows were broken and boarded up. I wonder if anyone lives in there or if it's still being used for something. I can see cloth peeking through the top windows, but the doors are all boarded up... SOME KIND OF GRISLY HORROR/GHOST STORY, PERHAPS?

Then I rounded the corner and made it to the church. Hooray!

What is this symbol? Does anyone know?

At this point, some dark clouds moved directly over me and gusts of wind were starting to blow. Armed with only schwarma and a reinforced plastic grocery bag, I try the church doors. So much for sanctuary. Despite it being Sunday (or perhaps because), this church is closed. But luckily, it's not coming down too hard and I escape the worst of it huddled under some trees, using my grocery bag as cover.

In about 15 minutes it looks like this:

Welp, since I've reached my destination I decide it's time to head back, using the most circular, roundabout way back I can think of. The sky is getting steadily darker and while I don't mind getting wet, I do mind replacing my iPhone. I've seen it come down hard when the clouds get this bleak-looking. Plus, I am wearing suede flats. Call it feminine vanity, if you will.

On the roundabout way back I run into a farm of some sorts, with horse and some geese. The horse flirts with me, extending its head out past the railing and flitting from side to side. Honestly, it probably thought I had apples or sugar, or whatever it is horses crave, in my bag. It started munching on the grass in front of my feet. I debate whether it will bite me if I pet its nose and also whether it will get sick if I feed it shit from my schwarma wrap. There are also some fucking angry geese honking at me nonstop.

"Oh yeah!? Whadda ya think you're lookin' at, punk?"

"I'm a horse. Dupe dupe dupe dupe."

I get so distracted by the animals, I fail to notice the sky has darkened considerably. Enter rainstorm #2. Except now I'm on a suburb street lined with dinky trees, and it's really coming down hard. I duck under the least wussy-looking one, and hope bugs don't fall on me. There's some gnarly looking fruit/nuts on this tree, spiky and fuzzy all at once. I really, really hope bugs don't fall on me. As the rain comes down harder, I give up. Luckily one of the houses next to the tree I'm standing under has a car port and the gate is open. I dash for cover and hope the people aren't home.

The last leg of this mini-adventure is pretty uneventful. The rain eventually stops after coming down hard, but it only lasts ten minutes, tops. I decide I better stop circling around and should head back towards the hospital in earnest, but I have no idea where I am. That was kinda the point when I started. So I pick the direction that I think I need to head back towards and cross apartment building courtyards and random little side roads, just so that I'm in a direct line back (I think).

Then I start to get worried, because I kinda have a terrible sense of direction, but fortuitously a pug walks by and distracts me. Add one more Coswig resident who thinks I'm weird. But it was SOOOOO CUTE and I love pugs! I decide if the next corner doesn't work out, I'm going to try and ask someone directions.

But round the bend I go and lo and behold, it's Kaufland! The supermarket where I pick up delicious cheap pate, salami, and bread. I know how to get back from here.

I make it back to the hospital, and who's waiting for me?

KEVIN, that's who!

I'd been trying to find him again for a while now. I wanted to get a good shot of him, he was such a pretty and friendly kitty. But every time I dropped low to take a picture, he'd come up and try and rub up against me. Since the other Kevin is deathly allergic to cats and is recovering from lung surgery, I thought it would be better not to uh, induce any asthma attacks.

But then, I guess I should have known better. Cats always win.While I was trying to get a decent shot, Kevin did this:

It's like he just knew I was trying to avoid coming into contact with him. He was also a bit wet. Did that stop him from curling up in my lap and nuzzling his darling little head into my arm, and kneading his cute little white paws into my leg?

Of course not.

"I'm a cute bastard and I know it. Kinda like the other Kevin"

I ended up spending the next 10-15 minutes assiduously picking cat hair off the front of my shirt and jeans, before deciding I better just go back and change. 

Human Kevin is still lying peacefully on his bed, trying to get some shut eye. There are two puppies barking right outside his window (of course). All is right with the world, a perfect end for a very pleasant day. 

P.S. Apologies for the weird formatting issues. The track pad on my Macbook is going out. Keeps thinking it's pushed down when it's not. Bah.

Saturday, July 28, 2012

Honest Confessions

Man, what a week. 

Kevin's surgery was last Thursday and it's now the following Saturday (I thought today was Thursday, which should tell you something about the time distortion you experience when you're in a hospital). Professor Rolle is very pleased with Kevin's progress and his lung is expanding at normal capacity again (mayhaps a wee bit too normally; the doctors think that might have contributed to Kevin's pain as the damaged lungs kept expanding against the tubes in his chest and against his broken ribs). We budgeted for 15-18 days between surgery and our departure date, but it looks like Kevin may be discharged at the two week mark (next Thursday), which is great news! If we can leave the hospital earlier, we'll probably head to Dresden and enjoy a few more days there before finally coming home. When I get home, I'm going to hug every puppy I run into and snuggle my geriatric pooch until even his needy little self is satiated. 

It's been a tough week, much tougher for Kevin than it was for me, but let's just say there have been a lot of mental ups and downs for the both of us. It is so hard seeing someone you've always known to be full of life and energy experiencing the worst pain of their lives. It's even worse knowing you can't really do anything about it. Not to mention the mind-numbing monotony of hospital routine: wake up, drag self to hospital, shuffle up something to eat, sit in hospital room, leave for cafeteria when it opens, come back, sit in hospital room some more, go back to the dorm and sleep when visiting hours are over, rinse and repeat. 

The first few days Kevin was either so drugged up he couldn't do anything, couldn't focus on a screen, couldn't draw, didn't want to be read to--nothing, except maybe some light conversation. And it's so hard to rustle up light conversation when you're sitting in a hospital room and have been sitting there, worrying and waiting. The hospital chairs here are also very uncomfortable, which adds insult to injury. I don't see many people attending their loved ones here, small wonder why! 

It was really hard for me, especially the first few days after surgery. Kevin has always been my best and most favorite companion. We almost always find something to talk about and his positive energy and fucked up humor always makes me smile and gives me the energy to move forward in life. But this was a very major surgery, more than most people experience in their entire lives, and Kevin quite possibly now holds the world record for number of tumors removed from a lung in a single surgery. It's crazy to think we'll probably have to do this a few more times. Man, Kevin really is fucking incredible.

It was so hard to see him going through what he had to go through, especially once he was removed from ICU and put back into general populace and the painful process of healing began in earnest. It took the light out of him. The pain made him fretful. I'd never see Kevin like this. Sure, sometimes he'd come home from work and be down about something that happened, but Kevin is an even-keeled fellow who is a world-class problem solver. I just had to listen and he'd fix things himself. 

During those first few days, I didn't know what to do at times. I didn't know how to deal with my companion who up till now had always been healthy, vigorous, and full of mental strength. Other times, I didn't want to be there. It wasn't that I had anywhere else I'd rather be, I just wanted to not be there. I just wanted to be somewhere else, alone, away from it all. Then I would feel horribly guilty for nursing these thoughts, I felt disloyal towards Kevin. He was in pain, suffering, alone in a hospital where nobody really spoke English. All he had was me, and sometimes I wanted to not be there. 

It's really hard to write these things, but you know, I think it's really important to. Kevin and I have always tried to be honest, about our feelings and our thoughts. I still harbor guilt over certain things from these last few days, but looking back I don't want to be ashamed, I want to be stronger for the next time we are here. I want to be stronger, period. I wish I could say I had been super strong and had stayed by Kevin's side 24/7, radiating cheerful energy the whole time. I wish I could have been that strong, but in the end, I could only do the best I could. I still came and saw Kevin every day, sat by his side for the majority of every day. But inside I would be upset. All sorts of thoughts went through my head. I can't do this. I'm tired of this hospital room. I don't want to wait on Kevin, he's got nurses for this shit. I want to go for a walk, I want to talk to other people. It's too much of a burden to have to be here for Kevin, all the time. It's not fair. Is this what my life is going to be? Is this what my marriage is going to be? I thought I could deal with this, but I can't.

When it got too much, I would say goodbye to Kevin and go back to my dorm and stare at the ceiling. Sometimes I'd try to read. Mostly, I'd sleep, because at least when I was asleep I'd have a break from these thoughts and I'd be able to get up with renewed energy and could once again look forward to seeing Kevin.

Even though we had a courthouse wedding and everything was really rushed, I thought a lot about those words, "...in sickness and in health." I'd only ever known Kevin in health, and I loved that Kevin. I wanted to be around laughter and happiness, not sickness and depression. I didn't want to be dragged down. But in the end, I knew Kevin needed me. Oh sure, he'd survive if I didn't show up at the hospital. He could even tell, sometimes from my face, when I needed to get away, and would tell me it was fine, to take some time for myself. That made the guilt worse, but it didn't make how I felt better. Maybe I deserved to suffer, for having those thoughts.

But now that Kevin is much better, I'm trying to sort through everything I thought and felt these last few days and come to terms with it. I don't want to make excuses, but I also don't want to feel guilty. In the end, the most important thing is Kevin. I want him to be healthy and happy. I want him to be able to rely on me. Even when I was feeling my worst, I wanted those things for Kevin. I've said it before, there will be good times and bad times, but I think I was just saying that before. I don't think I really understood what that meant until after this week. I guess you could say I learned a lot about myself. You just don't know. I don't want to ignore all the bad things and only talk about good things, because that wouldn't be real. Kevin and I have so many good times, it's only natural there are bad times too. 

Ok, all of this was pretty hard to admit openly on a public blog, but I wanted to do this for myself. Cancer is fucking hard to deal with. But I think next time will be better. I think I can be a stronger person, for myself and for Kevin. 

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 " ...it'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 pain...it'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)

      Yea....it 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.