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, " 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 "'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. 

Sunday, July 22, 2012

During, Before and After Surgery

The morning of the surgery-

Here is a list of things that happened before the surgery (I am only posting this since my nausea is almost completely gone and I am able to type again).

1- ( sucks) waking up at 5am because the english "presurgery checklist" says to be ready by 5:30am even tho nobody stops by till after 7
2- (sucks) Getting shaved again by a male nurse that does not speak a lick of english ( no creams, just small cuts and rashes)
3- (not too bad) spinal epidural - Dr. Krassler ( the chief anesthesiologist, Wow I can type that without spell check now) it feels weird having a long needle going into your spine but they numb it pretty well beforehand with standard local anesthetic needles( like the dentist). This is apparently the best form of pain relief since it's instant ( I don't even feel the tube coming out of my back right now)
4- (great) all the drugs they pumped into me to get me to pass out (ending with the oxygen mask and lots of injections)

Waking up after surgery! -
(Disclaimer: everything below may be a bit hard to read for some of you more sensitive folk)

It happened so fast I remember wondering why they haven't started yet ( I was a bit delirious from the drugs which was a good thing). My memory is a bit hazy from the first night but THAT'S OKAY. What I do remember is waking up with lots of different colored wires hooked up everywhere -bloodpressure valve, different nutritional tubes, pain-killers , 2 drainage tubes coming out of right lung and finally my pee-pee catheter (which was the best one since I remember hating life trying to pee into a bucket right after my last surgery in America ). BTW opiate painkillers can make it very difficult to loosen yourself up enough to pee, even with a full bladder. That's probably one of the worst pressures I have experienced in the past so when they asked me for the catheter option earlier I was like HELL FUCKING YES! ( there is a tingling sensation to it but other than that, no pain. plus they installed it while I was passed out)

First Night After Surgery-

I could not sleep the first night, this was normal for me after basically "sleeping" for 4 hours during surgery. The drugs were keeping the pain manageable but I had a decent amount of nausea since the anesthesia was still in my system. After Connie left the room (ICU hours are strict and visitors need to be out by 10) it was me and my Ipod nano audiobooks for the rest of the night. I listened to Fedmahn Kassad's backstory in "Hyperion" (a fucking amazing sci-fi novel) which was incredible. I knew I couldn't sleep even with pills ( I asked for multiple throughout the night) so this was the perfect distraction for the night. Yea, this is a situation where audiobooks wins over books, my vision was contributing to my nausea so listening to an audiobook or some soothing nature sounds really made the night bearable.

The Next Day after Surgery-

I was dead beat tired at 7am when the nurses came in all chipper to guide me through my morning routine (portable X-ray of my chest, in-bed physical therapy where I did some mobility stretches for circulation). I also experienced the worst pain of my life for a good 5-10 minutes when they had to manually suction out a bunch of blood out of my lungs (not enuff pain meds probably since the epidural was running low). I also didn't have much of an appetite throughout the day but I ate anyways and I spent the day in bed trying to sleep while occasionally coughing up some weird black stuff (which looked like tiny pieces of burned firewood...maybe they were dead tumor remains?).
My nausea wasn't too bad this day, I didn't start throwing up until the next day.

The 3rd Day after Surgery-

This was the toughest day. I woke up feeling so sick that I had to throw up every 20-30 minutes for the first couple hours ( I did sleep for a couple hours) . The doctors switched out my painkillers to something else which helped later. Also, coughing up small blood chunks into a small cup(while holding my stitches) became part of my morning ritual. The doctors gave me a medication that forces slime into lungs and makes me cough out bad blood to prevent infection..soo coughing up blood was a good thing.....Btw the all the nurses here are incredibly skilled. Markus in particular. He kept my spirits up and had a great sense of humor while taking care of me.

Later he asked me if I knew what happened in Colorado with the Dark Knight Rises shooting. I quickly looked it up and was pretty shocked. He asked me if it was easy to obtain a gun in the US and I gave him the whole rundown of our process and how every state handles it differently and how some of the smartest people could be local terrorists. Either way that night is going to taint an awesome movie and the movie-going experience in the future which should always be/feel safe. I talked to the night nurse about it as well.

Later in the evening I started feeling better, my body was agreeing with the new painkillers and I was able to keep food down. I asked for extra sleeping pills which they gave me and I was able to sleep for 5 WHOLE HOURS! (which is really good me when I'm in a hospital). After waking up around 4AM ( I slept at sunset 10pm and Connie left around 9) I listened to more "Hyperion" early in the morning. I finished the poet Martin Silenus' story which was also super fucking epic. The visual descriptions are incredible and I had awesome lucid dreams the whole night (flying, blowing shit up, changing my environment like the movie "inception"). Maybe it was the new drugs but this was my first restful night.

The 4th Day after Surgery - The Day I feel Good again

Today I was able to eat breakfast, piss on my own, walk around a bit in the ICU area with Connie and type this damn blog entry. Great day so far! Connie helped give me a sponge bath which made me feel normal and clean again....and no nausea! ( I know she loves me when she can put up with all this). The doctors have been easing me off the painkillers since yesterday and today I am on a lighter dose from the epidural combined with some oral pain meds, I feel "cleaner". The strangest thing is I don't really mind the 2 tubes coming out of my lungs. Since I had this experience already with my last tumor, this was a cakewalk. Plus the tech is better, the suction device has a charging station and monitors the amount of plasma/blood coming out of it. The biggest annoyance is that I have to carry it around with me like a small heavy briefcase/ball&chain.

  Anyways, I think the worst is over for this trip. The doctors told me that my lung took a huge beating and are satisfied at how I am recovering despite the number of tumors they zapped. I just have to keep using my lung trainer every hour and make sure to get up now and then until they move me out of the ICU and back into general population. I have also lost all physical shame during this experience, having the nurses(both male and female) take care of all my bodily functions and having my wife sponge bathe me is something people don't normally experience until they are past 70. When the time comes to do the other lung I will be a total pro and probably be a lot more bitchy and demanding since I know what my limits are now.

  Thanks to everyone for reading these longs posts, it helps me to know that some of this info may help enlighten some of you to make better health decisions and even reevaluate your current life situation ( please learn from my mistakes) . Please do your own thorough research and keep track of your own body, our western diet is a feeding ground for cancer( and other diseases) and the doctors do not know everything ( and a bunch of them are bought off, just do research on medicare exploits). Sometimes our minds try to tell us things like "hey asshole, why don't you get that bump checked out" or "hmm I haven't gone to the doctor in a while but I'm sure I'm fine" or " hey this doctor is kinda shady, maybe I should get a second or third opinion?". 

Lastly, please check out this TED talk (18min) on how Dr. Terry Wahls conquered her multiple sclerosis with an aggressive diet even when her fellow doctors said it was hopeless and incurable.

Here is Dr. Terry Wahls Book with good info and lots of recipes.

I also highly recommend this book for health and cancer awareness:
Anticancer A new way of Life (kindle version available!)

...this books also talks about ways of preventing other serious illnesses (diabetes,heart disease, autoimmune diseases, Alzheimers, etc) and how they are all related to taking care of our body's natural "terrain".

I will do a future post on why I juice multiple times a day and hows its a more convenient way of following Dr. Wahls' inspirational story.


Friday, July 20, 2012

Day 4: The Day After Surgery

Spent all day with Kevin in the ICU today. The day after surgery is always a little rough, with ups and downs, but I am happy to report when I left him at around 9pm he was doing fine. I can't express how proud of Kevin I am. This surgery is srs bizniz, but he is being such a trooper. I know he's in pain, nauseous, and sleep deprived, but he ate his first meal, ate one of my bananas, drank so much chamomile tea and water that his nurses have to keep coming in to change his catheter bag, and has made his way through a huge chunk of Hyperion. I'm pretty excited about him "reading" Hyperion (audiobook format) because IMHO, Hyperion is one of the finest works of science fiction I've ever read. It's my grandest ambition and fondest dream that I may one day write something so amazing, but just the thought of trying to write like Dan Simmons gives me massive inferiority complex and more anxiety than I know what to do with. Bah, must work harder at my personal writing. Gotta produce something other than game text first, but doesn't hurt to dream big, right?

I'm really impressed with German healthcare in general and the staff at this hospital. One of the nurses, Marcus, is just pure awesome. When he comes in to empty Kevin's pee bag, he and the other nurse Mathias clown around, pretend like they're pissing in a urinal on the wall as his bag drains and make comedic faces at us, totally making me and Kevin laugh. He said when Kevin is feeling better, he'll take us in his car to go see Moritzburg Palace, which is not too far from Coswig. He made us look it up and it looks incredible. His English is only so-so, but he tries really hard and when we struggle, we pull out the iPhone German-English dictionary and he patiently helps us pronounce certain words. We are currently trying to learn how to say "brechreiz," which means nausea, but it doesn't sound anything (at least to our ignorant American ears and tongue) like it's written.

I am feeling much better after getting a full night's rest (in fact I overslept this morning and was a bit late going to see Kevin this morning), but I had a bit of a downer coming back from ICU tonight. I ran into the Finnish kid's father on my way in and as we were walking up to the stairs to the dorms at the top of the admin building, he told me his son is not doing well. Physically, the Finnish kid made it through his surgery just fine and has already been moved out of ICU but he's refusing to eat and is very angry with both his parents. His father had just been to see him, to convince him to eat something, but he refused to speak with him and only grew angrier. The poor kid is only twenty-one, he was diagnosed when he was seventeen. His parents said they've tried to get him to see a psychologist, a counselor, anybody but his only response is that a psychologist can't help him with his cancer so what's the point.

It reminds me that the battle against this cancer is not just physical; there's a mental front as well. One mother of an ASPS patient described this disease as "having a long arm that reaches out over the years." We've been dealing with it for all of...maybe six months? Barely? Most of the patients we know have been dealing with this for years. I've had a lot of you praise Kevin and I for being strong, and commending us for our positive attitude, and Lord knows I love you all for being so supportive and deeply appreciate the positivity, but the truth is I don't feel that strong at all. I cry a little bit at some point every day, sometimes I think terrible thoughts, and wonder what this means for our future. I flipped out when they took Kevin and I couldn't understand the nurses. I try not to think about what will happen if this doesn't work, if the tumors spread, if we run out of money for treatments, whether we'll be able to have kids or continue our careers, or start a company, make a go of living in Japan for a while. Some days I think I tell myself it will be ok, and the positive words I write are just what I tell myself to feel better because what else can I do?

But I really love life. I really love my life with Kevin. And I love Kevin. Even though we're going through this whole thing, I can't help but enjoy the beautiful campus of Fachkrankenhaus, be excited that we're in Germany, look forward to coming back home and snuggling my dog, shipping an awesome game, and seeing our friends again. Food still tastes amazing, books and movies still paint fascinating worlds that I like to get lost in, sleep still feels so good. It almost seems unfair in a way, but at the same time it also makes everything bearable. In a way, the really terrible depression I went through from 2009 to 2010 helped prepare me for what we're going through now. To deal with the depression, I spent a lot of time reading up on mindfulness, I spent some time seeing a very good therapist, and I spent more time than I ever did inside my head, getting to know myself, thinking about how I wanted to live my life, what was important to me, what I thought about people and everything else in this world.

(Side note: Incidentally, if you're like me and suffer from anxiety and/or depression, I do really urge you to look at mindfulness as a way to cope. I want to thank Lisa Pozarich for introducing me to Thich Nhat Hanh and his recording The Art of Mindful Living, and I also recommend looking into the research and publications of Jon Kabat-Zinn. There's a great Google talk that he does, and generally a sheer wealth of material online. I was able to stop taking anti-depressants after a while and though I still suffer from GAD (General Anxiety Disorder) I've sort of come to terms with the fact that I'm just kind of neurotic and nervy, what they would call "high-strung" in olden days and will probably always grapple with it. Plus Kevin is like a solid rock that I can cling too when I'm overwhelmed by stress and stuff. I have been surprisingly ok through this whole cancer ordeal--it's kinda puts my petty problems into perspective.)

One thing mindfulness taught me was we should live in the present; problems arise when we dwell on the past or get lost in the future. What's important is the here and now, and to be fully present for the people we care about now. And if you think about it, it's always now. Maybe the mark of a strong person is not that we're prepared for any eventuality, or that we have a perfect record, but that we can deal with whatever comes at us as best we can, forgive ourselves when we fuck up, and look forward to whatever tomorrow brings us. And if we've really messed up, to know that every day is like a step forward beyond that mess, towards being the person we want to be and away from the person we are ashamed of. I guess I can be strong if I think about it like that. I have no idea what's going to happen with this disease and neither does Kevin. But what's important is we're doing everything we can about it now and we still have each other. Life is still very, very enjoyable. My heart still sings with joy when I wake up first thing in the morning (well, followed by fuuuuck, is it time to get up already?) and as long as I can find happiness in being alive, then everything is going to be ok. I'm going to cling to that and do my damndest to make sure Kevin does too.

I know it's not going to be easy, but the sheer flow of support from California to Germany has been incredible. I don't feel like we're doing this alone. We've got all of you rooting for Kevin back at home.

Sorry for getting so weepy and philosphical in this post, I guess hearing about the Finnish kid really got to me. I really hope he'll be ok.

Thursday, July 19, 2012

Day 3: Surgery is Over!

Just came back from ICU. Kevin is doing great!! He's feeling a minimum of pain, was lucid, and seemed in good spirits. The first question he asked was, "Is the surgery over already?" Other than some dry mouth and sore throat, he feels pretty good, though most likely it's because they're feeding him some epic painkillers through his IV :P

The nurses in ICU are very nice and make a huge effort to speak English. I spoke with the mother of another ASPS patient from Finland, and she said she thinks it's because they know what a rough surgery this is, so they do their best to be accommodating and compassionate.

Dr. Rolle stopped by to check on Kevin and to give us some details about the surgery. He said altogether he resected 129 tumors, of which at least 50 were in the lower lobe of his right lung. Apparently this is a common place for metastases to occur, while in patients with lung cancer from smoking, the tumors appear in the upper lobe. (Note: I am swearing off smoking forever. Even social smoking. And I love having casual smokes.) Dr. Rolle said the surgery was a lot of work (I'll bet! Jesus, 129 tumors?) but only took about 1.5 hours. The rest of the surgery time was spent suturing the lungs. Unfortunately, this will leave scarring which will make subsequent surgeries more difficult, which is one reason why we opted to go with Dr. Rolle as his procedure results in the least amount of scarring and therefore makes repeat thoracotomies possible. More conventional methods available in North America typically result in loss of lung tissue (and obviously function) and repeat thoracotomies are typically not recommended. But with ASPS we have no choice but to continue resecting lung mets as they return, so we have to do what we can to make future surgeries possible.

Today, they will allow Kevin to rest and recover from the surgery, but tomorrow he must begin a rigorous physical therapy schedule to strengthen his right lung and and restore lung capacity. We'll be here for another two to two and a half weeks for rehabilitation. Kevin says he feels some pressure in his right lung, a sort of compression, which is very natural. The mother from Finland says there is usually some pain and difficulty breathing associated with rehabilitating the lung, with the greatest fear being pneumothorax, or a collapsed lung, but luckily we've had a lot of other patients warn us, so we'll be on our guard.

So here's the game plan. By following the few ASPS patients who have trail blazed the way for us, the most hopeful path is to continue with these surgeries until we have significantly reduced the tumor load in the lungs from hundreds to a handful. There is a surgeon in Chicago, a Dr. Littrup, who performs a procedure called cryoablation that kills off mets by freezing them. However, the number of mets Dr. Littrup can deal with using cryoablation is significantly lower, so we have to try our best to get rid of as many tumors as we can (all of them, if we can) and then freeze ones the ones that grow afterwards. Dr. Rolle has said that typically after he has removed tumors on both sides, often clearing both lungs twice, the number of tumors and their rate of growth drops significantly, allowing for a procedure like cryoablation to be effective. I'm also thinking diet (green tea, fish oil, anti-cancer diet) can help slow the growth of this cancer. As much as I love Germany, flying to Chicago for treatment will be a lot easier on the both of us, instead of making this epic trip to Germany every year.

Welp. That's pretty much it. I'm hoping science will make some breakthroughs, since right now it's resection, diet, and pray (maybe systematic treatments with TKIs) but in the mean time I'm really happy that Kevin made it through this first surgery with good spirits and in good health. Already, many of the ASPS patients who have seen Dr. Rolle are living past the time their oncologists measured out for them. The kid from Finland supposedly only had 4 years, but his mother tells me this is his 4th year and he's still alive and kicking. Our doctors gave us seven to ten years, but I'm hoping it's going to be much, much, much longer than that. I'm in contact with patients who are well past the ten year mark and enjoying an excellent quality of life, as long as they are vigilant about their scans and proactive in dealing with mets.

So here's to our first counter-move against ASPS! We will kick your ass ASPS, we will live to do all the things we said we would, and we will be happy. There will be some rough times ahead, days when we break down and cry, but we will keep trying. Some day, someone is going to figure out how to beat this permanently and we plan to stick around for when that happens.

Gonna eat some bratwurst and then go visit Kevin in ICU some more. Then I plan to get my first full night's rest since arriving at this hospital. Oh sleep, sweet sweet sleep, how I've missed you.

Day 3: Waiting during surgery...

The nurses wheeled Kevin away this morning a little before 9:00am today. It's been a kind of a weird, distorted last 12 or so hours for me. 

It's probably not helping that I haven't been sleeping well, nothing other than cat naps in Kevin's hospital bed while he was out doing tests during the last two days. The nurses let me stay this last night in Kevin's hospital room but in retrospect I probably should have gone back to my dorm and slept, but I wanted to be near Kevin. In the end, they gave him a super strong sleeping pill that knocked him the fuck out, and I ended up awake the entire night. The really didn't design this hospital for overnight guests (hard chairs, tiny hospital beds) and I spent twelve hours trying not to disturb Kevin while at the same time trying not go crazy. At one point I tried to leave to go back to my dorm but they'd locked down the entire hospital. In my sleep deprived state, I seriously considered opening up the windows and shimmying down the rain pipes. Then I realized what a terrible, terribly stupid idea that was and instead, played FFIII on my iPad and finished Kristin Casshore's Fire. Ironically I received a call from a Square Enix recruiter at around 2:30am. I thought it was Kevin's dad so I picked up, then realized I was talking on the phone in a hospital corridor at 2:30 am and had to hang up in a hurry. I wrote the recruiter lady, who sounded kind of miffed, a nice email and then opened back up my Square Enix game :)

When Kevin woke up, I'm sorry to say I was one cranky beast, rawr. Poor guy, but we got in a good snuggle before the nurses came and took him. I panicked a bit, the two "ward-sisters" as they call them barely spoke English and didn't tell us we wouldn't be coming back to this particular hospital room, so I was stressed at trying to throw all our stuff into manageable bundles to be stored by the nurses or carted back to my dorm, especially Kevin's electronics.

Then I had my second freak out when they told me to kiss Kevin good-bye as we were waiting in the hallway. I tried to ask them where they were taking him, what was happening, where I should wait, but that was beyond their English and they kindly shooed me away and I probably wandered the hallways looking like my dog got shot. All the nurses had mysteriously disappeared (probably doing morning rounds) and when I found one, I pounced on her but she spoke absolutely no English and just kept pointing in a vague direction and unleashing a flood of German. I am so, so, so determined to learn German when we get back. I can pick out some written German now and can speak some basic phrases, but I can't understand anything, especially at native speed. I know it must be annoying for the nurses to have this annoying foreigner hovering, but I can't help it, it's my Kevinz. I went back to the dorm and grabbed my phrase book (and got a little pissed) and came back determined to get some answers, come hell or high water. Ironically, at this point the doctor's secretary had come in at this point (she speaks decent English) and I had my answers. Hah. You should have seen me huffing and puffing back up the hospital path, ready to do whatever it took to find out where Kevin was and when I'd see him again.

So now I'm waiting. I went back to my dorm and conked out for three hours. I feel a little more human and less like a harpy. I checked with the secretary at 1:00pm, Kevin is still in surgery though the main procedure is over, they are closing up his chest and doing other stuff, so she told me to come back at 3:00pm. I am now a ball of anxiety and I feel remorse for being such a grumpy gus this morning. I need to see my husband and see that he's ok, and tell him how much I love him and how grateful I am that he puts up with my bitchy, bitchy ways. 

36 more minutes...  

Wednesday, July 18, 2012

Day 2 : The day before Surgery!

So this morning I woke up feeling much better. I ended up only taking 1 of the hardcore sleeping pills but that combined with the “rest and relax” Ipad app and lots of camomile tea really did the trick. Connie left the hospital bed in the morning to sleep some more in her dorm which is totally understandable (the nurses wake my ass up early every day). I slept for about 7 hours which is GREAT for me.

Morning - The Bike Test

At 9AM I had to do a cardio/lung capacity bike test. They stuck a bunch of electrodes on me and had me put on some kind of a mask which is hooked up to a computer that reads the amount of air that comes out of my nose and mouth. They were also monitoring my blood pressure changes during the stationary ride. As I was peddling the nurse was increasing the resistance until I started feeling tired (my legs became tired long before my lungs, I have been running almost daily at the hotel gym in Dresden so that helped). While I was sweating on the bike this other nurse was trying to take more blood/tissue samples from my right ear ( just like yesterday). It took her many tries since my earlobes are big and difficult to work with. This was the most painful part so far, it’s kinda like when a nurse can’t find a vein when taking blood and ends up piercing like 8 holes in your arm (which happened to me during an older physical exam years ago).
They were impressed by the amount of sweat I generated within the 10 minutes but that caused the burning fluid they put on my ear to drip all over my shoulder and arm (which burned for a while afterwards). I was kinda annoyed at the nurses afterwards but I learned long ago that most people do not sweat like I do (Cryder called my body’s cooling mechanism very efficient when we used to work out together).

11AM - Learning how to use the Lung Rehab Devices

A different nurse came into my room and gave me 2 plastic bags with more epic snorkel looking stuff in it.  The first bag had a portable lung capacity tester in it. This is mainly used to track my lung rehab progress after the surgery. Since my right lung is going to be collapsed after the surgery I can use this to see how much air I can hold.
The other bag is an attachment to a machine in the hallway which pumps air into your lungs causing them to expand automatically. It’s like an air compressor with a personal tube attachment. I used it a few times and it’s kinda relaxing (it does the breathing for you and theres a little blow off valve that exhales the air automatically when your lung hits its limit). They told me the more I use this thing, the quicker my lung will return to its normal size.
LASTLY for lung rehab I have to go to this special room ( looks like a row of small personal phone booths) every 3 hours to breath through these vaporizers for 10 minutes at a time ( damn, no THC options available says one of the Anesthesiologists ). BTW after telling at least 8 doctors from different hospitals about my nightly vaporization of marijuana not a single one cared and a few didn’t even classify it as a drug. The drugs they cared about was the crap the pharmaceutical companies make that kill a small/moderate percent of their users ( hmm, but natural remedies that can easily be grown by the individual don’t make billions of dollars!).

Early Afternoon - Evaluation of my CT scan with Dr. Rolle

Dr. Rolle visited my room and wanted to show us my CT scans.. He told us that there are still more than 100 tiny tumors between both my lungs. With his laser tech he has removed more than 50 at a time with past ASPS patients, not like there are many patients to compare since I am the number 10 ASPS patient in 16 years, but the past surviving patients have had hundreds of tumors removed.
The good but expected news is that my lung tumors have barely changed since my last CT scan in May. The fact that he couldn’t see obvious growth is a great thing but he said that’s normal once the primary tumor is gone (the main hatchery that Dr. Eilber removed in Jan/February). He also said the tumors are not always predictable, it could go from not growing at all for 3-6 months to growing and zerg rushing other parts of my lungs so I have to keep track of the growth once I get back to the US.
Dr. Rolle explained to me that the people that have died from ASPS have consistently not kept track of their tumor growth, thinking that it was “cured” or relying completely on standard cancer treatments (chemo, radiation, alternative medicine) then waiting too long. He had to deny a few patients because the tumors were too large which made the lung unresectable. I know this cancer can be as stubborn as I am (since they are little evil versions of myself ). So in order to live past 7 years I have to really do a shotgun treatment approach (lots of surgeries, an aggressive anticancer diet, alternative eastern medicines and lots of green tea). Luckily I caught it early enough to actually have a chance. My situation might have not as been as bad if I would have been more responsible about taking care of my chest tumor early and actually eating more vegetables than tomatoes in hamburgers and pizza ( or starving myself which is equally as bad).
I will have to warn all of my friends early that I will probably treat and preach health like a religion from here on out ( and probably be a big bitch about it). I am one of the youngest patients in this hospital and there are a ton of older lung cancer/breast cancer patients. Dr. Rolle also told me on Monday that there is an overwhelming amount of evidence that lots of smoking and drinking cause cancer but most people ignore the research. My attitude about dying early changed. Dying a quick and painless death is easy, but dealing with cancer as an old person with a weak body? That is going to be much worse than a quick death for many people. Anyways, that’s enough of my preachy talk, on to my little scare of the day!

Mid-afternoon - Heart tests

When the results of my blood pressure/bike test came in the doctors were concerned since my blood pressure actually went down as I over exerted myself on the bike. They said commonly your blood pressure should be consistently going up as you tire yourself out, but mine actually went down. I became super worried. I thought to myself  “ wtf really? Is this going to get worse already? Did the cancer spread to my heart and is going to make my lungs inoperable?” Luckily that was not the case. They did an ultrasound heart test for about 20-30 minutes which showed that my heart was totally okay. I was relieved and really happy afterwards. I am still glowing from the news of my heart being normal and healthy. I then wondered if that would be a good manipulation technique into getting the patient to feel happy before a major surgery, CUZ IT FUCKING WORKS.

Later afternoon - Meeting the Anesthesiologist & Signing lots of Papers

After the Dr. Rolle said my heart was okay he explained tomorrows procedure to me.
He is going to slice open my right side (under the armpit and down) and burn off (using a laser system that HE FUCKING INVENTED) as many metastasized tumors in my right lung that he can see. Yea.. there is something comforting about being operated on by a doctor that invents his own tech. Afterwards I signed lots of papers after he explained everything.
Next I met Mrs. Hoffman, one the Anesthesiologists. She gave me the rundown on the general anesthesia procedure and the epidural which will be inserted into my mid-upper spine. Yea it sounds bad but it’s apparently the best form of pain relief since it essentially turns off your nerves in a large area. I think of my body as an organic machine more than I ever have after today. She also had me sign some papers regarding the risks of anesthesia which I knew from my last surgery ( the risks are pretty bad, but so are a lot of prescription medications).

Early Evening - Final “Preparation” and Meeting the Chief Anesthesiologist

So obviously I couldn’t eat anything past lunch since my body needs to be pretty much empty by surgery time. They did give me some delicious soup as my final meal and are allowing me to drink water and teas.
Before the Chief Anesthesiologist visited me, one of the male nurses had to give me my first ENEMA to clear me out. I will not explain it since it is too undignifying but here is a link.

The Chief Anesthesiologist  caught me in the middle of my enema bowel expulsion but I
didn’t really care by this point. He gave me his cell number for Connie to call once the operation was complete. He was a total badass and spoke English very well, which is really comforting in a hospital where I can’t really communicate with more than half the staff. He told me the surgery will be around 4 hours long and that he will be doing the Anesthesia ( BTW I had the option to pay an extra 2k for the Chief to administer the anesthesia and hell yes I paid, I wouldn’t want anyone else fucking with my spine).

Evening - A Few Final Words before Surgery

Connie has been my greatest supporter during this experience and I love her more than anything in the world. She has infused me with positivity and strength which makes this experience much easier. I see a lot of depressed cancer patients walking around alone and I think I might have enough positive energy to give them once I begin to recover (I can’t understand most of them, but I learned a thing or 2 about body language communication when we visited China a couple years ago and there are some awesome translation apps on my Iphone which I carry around). Maybe I will draw them something.

I am feeling very confident about the surgery. Both the Chief doctors are world renowned badasses and are very specialized in their field. I could not be in better hands. I will post another update once I am able. Connie will probably write the next blog entry.

I am about to shower, take my hardcore sleeping pill, drink more camomile tea and go to bed. The nurses are going to wake me up around 5AM tomorrow and the surgery is at 9AM. I will be totally drugged up before then. In America my surgery time will probably be past midnight on Wednesday/Thursday. When you folks wake up, I will have less cancer in my body. Good Night and wish me a successful resection!