Monday, July 16, 2012

Day 0: Checking in to Fachkrankenhaus, Coswig

Day 0: Checked in to Fachkrankenhaus in Coswig

Hey all, we're here! And so the great adventure begins...

We took a cab from our hotel in Dresden to the hospital yesterday (about 20 minutes by taxi). During the check-in procedures, it began to sink in that while we got away with knowing only English in Dresden, Coswig and especially the hospital, might be an entirely different matter. The administrator who set me up in the hospital guest house (something akin to a dorm room) was very nice and tried her best (her English was probably the best out of the lesser hospital underlings) but I think there was still a lot of information we didn't really understand. Still confuzzled about why a 2 bedroom hospital room is no extra charge, or what exactly the rules are (got kicked out at 10:00pm from the hospital, guess that's one rule I know!) Also, asking questions is tough. Definitely going to study some German when we get back. "Sprechen sie English" only goes so far.

Met with Dr. Axel Rolle, the doctor who is the head of the thoracic surgery department at Fachkrankenhaus. He developed the laser that will be used in Kevin's surgery and is considered a leading expert in Europe on thoracic surgery in general. We talked a little bit about why this procedure isn't available in the US and let me just say fuck you American healthcare, the FDA, and the drug companies. Wait, let me say it again. Seriously, fuck all of you. We are going broke to get this procedure to save Kevin's life, and most likely will have to do this every year if we want Kevin to live past the 7 or so years they allot to ASPS patients. At this point, it is nearly criminal that this procedure isn't available in North America, even though it's been undergoing FDA approval for nearly a decade.

ANYWAYS, Dr. Rolle's English was quite good and we had a great discussion about Kevin's surgery and the outlook for ASPS in general.

Here's a mind-blowing fact: Kevin's cancer is so rare, in the last sixteen years Dr. Rolle has only treated ten ASPS patients, including Kevin. Through the ASPS support boards, I think we actually know of at least five of those patients, including the kid (now in his twenties) whose day-by-day account of his thoracic surgery Kevin included in his post.

Luckily, it was the very rarity of ASPS that contributed to Dr. Rolle agreeing to operate on Kevin. He said that from his limited experience with these ten patients, he's found it's best to get in there as early as possible and remove as many tumors from the lungs as he can. 90% of ASPS patients develop lung metastases so he makes it a point to accept them when they ask. Tumors that stay under 1 cm are less likely to spread to other areas, so we'll do everything we can to keep 'em that way. He also likened this cancer, of which we still don't have very much information about, to a game of chess. ASPS always plays white, while we play black.

Amazingly, there is another ASPS patient from the US staying at the hospital. We haven't run into him yet, but he's been coming here for the last four years, since he was diagnosed at twenty-one. I'm hoping to see him and ask him some questions, but other than needing to come to Germany every year to get his lungs lasered, Dr. Rolle says the young man is able to resume a fairly normal life--and is even studying to be a doctor himself!

We discussed the surgery some more, and it looks like we may be able to take a while, six months to even a year, until we have to come back for the other lung, depending on how Kevin's body reacts to the surgery. Dr. Rolle stressed that ASPS is a disease where the body's immune system definitely can play a role, so we've already resolved to continue with the juicing and adopt even healthier measures for diet and exercise. Thank you so much to the many people who sent us articles and information on anti-cancer nutrition and diets.

I really want to thank Christian Lichtner and Colie Hayashida for the extensive reading materials and personal accounts, dietary guidelines, and suggested foods they've sent us. Thank you both, so, so much. You both have been a huge help, not only in giving us hope but making us feel like we can do something about this cancer. I firmly believe that diet can make a big difference in fighting this disease and I intend to make some delicious veggies for Kevin when we get back!


  1. You are both so strong - an inspiration. Our thoughts are with you both.

  2. Xoxo Kevin and Connie. Take care. And yes, fuck us healthcare very much (and big pharma while we're at it too). Never understood why the capacity to save lives exists but is unavailable to so many. You two are amazing.

  3. What a blessing that Kevin has the opportunity to have this surgery! And you're right, it's an infuriating shame that it isn't available in the US.
    There's a cookbook you might find helpful for an anti-cancer diet. It's called "The Cancer Fighting Kitchen" by Rebecca Katz.
    Thanks for keeping everyone updated. Kevin has a lot of people pulling for him! :)

  4. Kevin and Connie, please please let us know if there is anything we can do to help. Don't hesitate to contact us. -Geri Kate