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.