Tuesday, August 7, 2012

Going Home

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

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

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

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

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

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

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

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

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

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

T-minus 2 days. See you all soon.  

Wednesday, August 1, 2012

My Final Week in the Hospital!

Hey All,

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


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

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

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

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

Connie found a doggy.

Epic street shot from the Castle.

Connie running through the epic garden before the hunting grounds.

iiiiiiii'ts Connie!

The castle is surrounded by a large moat.

The castle is also surrounded by great pubs.

A description for tourists. (Wikipedia is better)

Connie and I sitting, Markus took the pic.

9PM Sunset view from my hospital room.

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

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