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.


  1. Im grateful for every update you guys give us, and im grateful that Kevin is doing well, and that youre doing well. Keep fighting, and well keep sending our positive energy vibes overseas!

  2. I really love reading these updates. We are so happy to hear that Kevin is recovering well. You guys have been so amazingly upbeat through this, and we know it's because you also have one another. I eagerly await to read more of your updates! <3, The Downs' (and Bowser and Zoey)

  3. Thanks for the update Connie. Super excited that Kevin is doing well and that you guys are getting through this together. Look forward to seeing you both back home!!

  4. I think you're underestimating your strength. You've been straight ballah through all of this. You should remember that this time is the scariest because it's the first. The scariest thing is the unknown and right now most things ARE unknown. Next time there is something to deal with, at least part of it will be familiar and a little less scary. You guys are fuckin rock stars and I'm so glad that you have each other to lean on. Lookin forward to you both getting home. Miss you kids.

  5. Good to hear Kevin is doing well! We miss you guys :) Hope you get to see more of Germany soon.

  6. Oh, Hyperion, that was a great book... I gave it 5 stars on Goodreads before I even finished it. (I know that sounds stupid and petty but I almost NEVER give 5 stars to anything)