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.