Below are the 20 most recent journal entries recorded in hansrue's LiveJournal:

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Saturday, January 21st, 2006
9:16 pm	Moving the blog... Hello dear friends, I'm moving my thoughts and ramblings from Live Journal over to Blogger. The interface is just a bit easier to use and I can share pictures a bit easier. Please join me over at: http://hansrue.blogspot.com/ If you have any questions on how to post a comment on the Blogger message board, just drop me an email at hans@ellijay.com Thank you again for keeping up with me. Hans (13 Comments |Comment on this)
Saturday, January 7th, 2006
8:24 pm	Infection boy rides again... So I'm back from another whirlwind trip to Houston with mixed news to report. Let's start with the infection in my back: it's still there. The Dr.'s options for dealing with said infection were a)another tube, b)surgery, or c)30 more days of Levaquin, the antibiotic that made me so damn sick over the holidays. Surprisingly, he suggested the Levaquin and of course we went with his recommendation. I'll be taking Diflucan (an anti-fungal) at the same time as the Levaquin, so hopefully I won't have the severe abdominal pains that I had over the last few weeks. The abdominal pains have been debilitating, to say the least. I've been walking around literally doubled over in pain at times, shrinking from my normal 6'4" to about 4'4". Then there's pneumonia. Apparently I've still been clinging on to pneumonia in my right lung since the last operation. Combined with my other ailments, it makes me extremely short of breath. We live in a split level home and it seems like I'm constantly going up or down. I've gotten to where I have to rest on each level before proceeding to the next. I feel a hell of a lot older than 33 at those times. Finally, there's my broken rib. The Dr. said that if it hasn't healed by now, it's not going to. He also said that's no big deal though. Eventually enough cartiladge and muscle tissue will fill in the gap and the pain will subside. I need to breath deeply to help fight the pneumonia, but the broken rib makes it seriously painful to do so. It also hurts to cough, but that doesn't seem to stop me. Coughing has become somewhat of a past time for me...no fun. My weight dropped to the mid 150's during my last round of antibiotics and the Dr. wants me to try harder to keep the weight on. It's honestly not easy. There are so many days now where food seems like the bad guy...I just feel ill after eating. I'm back up to the mid 160's now and I'm trying harder to snack. I'm even drinking Ensure, which I find moderately disgusting. I have to guess that I'll finally end up in the mid 170's...I seriously doubt I'll ever get back to 214 again. We've had to go through my entire wardrobe and donate most of my clothes...they just don't fit anymore. I've had a few people tell me that they don't know what to say to me in regards to my illness. Those of you who reached out to me during this ordeal, through cards or email or this journal, did more than you could ever know towards helping my recovery. There were so many days in and out of the hospital where everything seemed so damned grey (and I must admit, there are still some damn grey days)...then a single card would clear those clouds. It's SO important that you reach out to those around you who are ill. Saying nothing is the worst thing you can do. Even if you just say, "I'm thinking about you", that's enough. It makes you feel like you're not doing it all alone. So, once again, THANK YOU to everyone who took the time and made the effort to reach out. I owe much of my improving health to you. If I can get these abdominal pains under control, I hope to return to work in some capacity this month. It'll be hard, but I really want to return to that daily structure. My poor friend Huitt is going to have a time trying to schedule me around all my doctors' appointments and trips to Houston, but I want to go back as soon as I can. Much love and respect to you all...don't take your next meal for granted (50 Comments |Comment on this)
Tuesday, December 27th, 2005
10:04 pm	Anti-bio First off, I hope everyone had a fantastic holiday and you're making crazy plans for New Years. Our holiday was very nice and our New Year's eve will be boring, but that's perfectly fine with me. A few years ago (probably right around the time Sonja was diagnosed with cancer), I read one of Dr. Andrew Weil's books...probably 8 Weeks to Optimum Health. Very interesting book, in particular the section on anti-biotics. I've been scared of them ever since. If you think about it, the term anti-biotic means "against life". Of course, the aim in prescribing these anti life drugs is to combat the foreign bodies that have invaded your system. But, anti-biotics cannot differentiate between good life and bad life. Those drugs always mess up my entire system and until recently, I've refused them for whatever ailed me unless what ailed me was pretty severe. I've had more anti-biotics pumped through me this year (just the last 6 months really) than I've had in me in the last 10 years combined. I appreciate what they're trying to do, but the long list of side effects that each variety sports invariably latch on to me like there was some reward for making me sick. I'm just coming off of a 12 day cycle of Levaquin and I've really had a tough time of it. I've been extremely dizzy, had no energy, had severe abdominal pains, etc. I'm taking (and have been taking) pro-biotics such as acidophilous to try and reestablish my system's microorganisms, but so far it hasn't helped. The infection in my back has cleared up for the most part, but it did so at the expense of my overall feeling of wellness. My dad's having to take Levaquin at the moment for an infection in his foot and I'm sad to say that he's having a rough time of things as well. Is it really worth it? I've yet to refrain from sharing my experiences with this illness, no matter how gross the subject matter, and I'm not going to stop now...so...GROSS OUT ALERT. If you're easily grossed out, skip ahead now. I've been having some pretty bad gagging episodes, usually in the morning or after I've just eaten a bit too much. I seems like food somehow gets trapped in my esophagus and can stay there sometimes for hours before it decides to simply come back up. It's not throwing up, because there's no stomach acid involved. It is just as uncomfortable as throwing up though. I'm usually relieved a bit though to get it out of me, no matter how gross it may be. The pressure of gagging is usually so intense that it makes my nose bleed, brings tears to my eyes, and pops out every vein in my forehead. It's a horrible experience. BUT, what's even worse is the fact that the taste of whatever I gagged up stays with me for HOURS...sometimes days. It's not a taste that stays right there in your mouth, but every time I cough it's there again. We went to Whole Foods a week or so ago and I sampled a cube of cave aged gruyere cheese. Just ONE cube (amazingly good cheese!). Two days later I had a gagging fit and all I could taste was that damned cheese. It didn't taste bad or old...in fact, it tasted as if I'd JUST swallowed the cube 15 seconds earlier. So, while the whole taste thing does sound really nasty, it doesn't taste old or rank. Very strange...don't know why I felt like I needed to share that, but maybe it'll make sense to someone out there who's been through an esophajectomy. I head back to Houston on the 4th to figure out this whole esophagus leak situation. I'm optimistic that it's healed on its own, but I've not really been overly lucky with this leak thing thus far. If it is leaking, I'm afraid that may mean more surgery or more tubes. This last tube honestly set me back 3 weeks. Easily. I was feeling like I was on the mend before that last trip and came back feeling like dirt...painful dirt. I still have really bad pain where that damn tube was and I just got a bill for $3800 from the hospital for yanking the thing out. OK...enough of my groaning. I've really had a tough couple of weeks and it's pissed me off to a large degree. It's hard to be positive and productive sometimes when you just don't feel good. Here's hoping for a fantastic '06 for all of you and maybe me too! Best wishes to you all, Hans (27 Comments |Comment on this)
Saturday, December 17th, 2005
8:19 pm	Emergency Room and the Biopsy... It seems like I only need immediate medical attention on the weekends or after hours, and Thursday was no exception. When I woke up on Thursday morning, I had leaked through the gauze and bandages, meaning that rather than going IN the tube like it was supposed to, it leaked AROUND the tube. I put in a call to MD Anderson and left a message. No response. The other drainage tubes I'd had previously would leak from time to time, so we pretty much ignored it. I had a nice afternoon shopping with my mom (who is a professional shopper extraodinaire and can walk through a mall faster than most people can sprint) and we had lunch at a great Thai place called Penang. At about 7:30 that evening, I attempted to sit up from my recliner and the pain in my back was unbearable. Something felt really different. I asked Amy to check the bandages and when I lifted my shirt, she gasped. Not only were my bandages thoroughly soaked through, but my drainage tube was filled with milky blood. Time to call Texas. My thoracic surgeon instructed me to go to the local hospital and get a chest x-ray and then get the tube yanked. So I phone my dad and at about 8:30 we headed off to the ER. Amazingly, they found a room for me within like 15 minutes. Unheard of! My doctor in Texas was kind enough to chat with the ER doctor and they developed a game plan. The ER doctor showed me on the X-ray that one of my ribs was broken. Apparently, Dr. Hoffstetter had to pop it during my first surgery and failed to mention it to me. That explains a ton of my pain on the right side though...glad to know it! Long story short, the tube was unceremoniously yanked at about 1:30 AM. I screamed. It ranked right up there with the big surgeries as far as pain goes. Damn. The other tubes slid right out, but this one was infected ALL the way down about 6 inches into that cavity. The amount of 'mess' that came of of that little hole afterward was incredible. You wouldn't believe it. So, I'm done with the tube...for now, but I have to go back to Houston in January to see if I need another. Keep your fingers crossed... BUT, the good news is, my biopsy results are back and there was NO cancer. None. Hot damn...no cancer. So, now the trick is to stay that way and we'll look at some more cells in 6 months. Once I get these pain issues under control, I think things can start getting as back to 'normal' as they can. I'm ready for a great 2006. Let's hope my body cooperates. Time to wrap some presents. If you haven't wrapped up your holiday shopping...good luck to you! Hans (32 Comments |Comment on this)
Sunday, December 11th, 2005
11:23 am	Valve-o-line When Amy and I bought our first house in Acworth, we took in a pitiful (mentally and otherwise) cat named Yin Yang. She loves to tell the story of how this disgusting cat won my heart, but long story aside, Yin Yang came home with us. It turned out she had a huge abcess on her back (the cat, not Amy) that needed draining and resulted in her having a gory tube coming from her back. Amy's friend Steph called the poor cat Vallve-o-line and Tubey. More and more, I can relate to that cat (though I think I still maintain a shred of my sanity, unlike the cat). The tube hurts like hell. Everytime I move or cough, I feel like someone is driving a nail between my ribs and through the thick muscle of my back. Very painful, but hopefully it's only for a few weeks. I ended up staying an extra night in the hospital (of course) because I reacted badly to the pain medications. The drug was called Narco. How could you not respond badly to a drug called Narco? It made me really sick, really light headed, and filled my should-be-sleeping hours with hallucinations. No fun. I should be returning home tomorrow (Monday) and I'll have to figure out how to function normally (there's that 'normal' word again) with this new addition to my person. So far the tube has not leaked a single drop, but it's mainly there so that the hole in my esophagus stays dry enough to heal. And to cause me massive discomfort. More from me soon... Hans (15 Comments |Comment on this)
Friday, December 9th, 2005
8:40 am	Back to Houston... So here I am in Houston about an hour before my plane leaves to go back home to Georgia. Unfortunately, I won't be on that plane. Instead, I'll be on an operating table having yet another drainage tube installed (this will be my 5th if you're keeping score). I had a pretty uncomfortable day of tests on Wednesday, followed by consultations with my doctors on Thursday. The test results seem mostly promising, but my thoracic surgeon told me that they'd found another leak in my esophagus. I actually asked him if he was playing an early April Fool's gag on me. No. It seems that the extensive damage that my esophagus received from the radiation treatments may have caused a small rupture. He said he's not overly worried about the actual leak itself (which should heal as my radiation damage subsides), but there is a concern about fluid that has already collected in small pocket in my back. If left unchecked, the fluid could fester causing necrosis of the surrounding tissue. The solution: drainage tube. I told my Houston friends Ron and Don (who've been amazingly supportive through all of this) that while some people collect shot glasses or spoons or t-shirts from cities they visit, I collect drainage tubes. It seems like I get some every time I come here. No fun. The tube is going to have to remain for "several weeks", which will make it hard for me to sit back or even lay on my back (which, of course, is how I sleep). I have to admit that I'm really disappointed by the tube prospect. I was hoping to come here and them send me straight home..."see you again in 3 months". No such luck. I hate tubes... It's strangely emotional to be back here. It's a mix of nostalgia and dread. I find myself clinging to habits that I didn't know I'd formed during my 8 weeks here. I walk the same routes, I sit in the same spots, and yes, I'm reading the same magazines (well, it's not like they've replaced the magazines...this place might as well serve as a historical archive for lost magazines). Ok...time to go under the knife (or maybe they use a drill for tubes?). More from me soon. Hans Current Mood: annoyed (15 Comments |Comment on this)
Friday, November 25th, 2005
9:24 pm	Turkeys and chemo... Without a doubt, I ate more food on Thanksgiving than I have since my surgery. I felt miserable afterward, but it was nice. We did the meal at our house this year: Turkey, Brussels sprouts, homemade cranberries, stuffing, etc. Good stuff. Ella thought it was chicken and had to ask twice for more. Chicken, turkey...whatever...at least she liked it! My appetite has been steadily improving since radiation ended and I've managed to maintain my weight (around 172) without the use of my feeding pump. In fact, I think we're going to remove it tonight. The nurse at MD Anderson told Amy how to remove the thing and I'm truly ready for it to go. It was a life saver during treatments, but it is very uncomfortable at times and it's always 'weeping' (which I guess is the nurses nice way of saying "oozing crud"). I was looking at the care instructions for my J-tube that the hospital sent home and even that literature mentions the constant 'crust' that needs to be cleaned. Bleck. The stitches that held the tube in place are long gone (painfully), so the only thing that holds it in me is tape. The nurse warned us that when we pull it out, expect there to be about 2 feet of tube that comes out. Should be interesting... Today was my final chemo disconnect, which means for now, I'm done. Damn...I'm done. I know this whole cancer journey is not over, but it really feels like I've made some progress. The next thing on the horizon is a round of tests back in Houston, including a biopsy, endoscopy, CT scan, doctor consultations, x-rays, etc. I'm optimistically hoping for a clean bill of health...at least for a few years. I'm very aware of the possibility of recurrence, but for now, I just want to jump back into 'normal' life, realizing of course that it'll be a new normal. One of the things I'm most looking forward to is doing a new cooking show on ETC3. The Food Network experience gave me some great insight on the process, and my earlier show on ETC gave me the experience. I have some fun ideas brewing. Hot tea is calling me. Much love and respect to you all, Hans Current Mood: optimistic (28 Comments |Comment on this)
Thursday, November 17th, 2005
8:41 pm	The end of Radiation... For those of you keeping track at home (I know I was), today was in fact the final day of radiation.  Not by coincidence, my esophagus hurts terribly bad today...very hard to swallow.  Dr. Schwaibold tells me that my swallowing functions should be back to 'normal' (that word has little meaning to me now) in about 10 days.  I'm counting them... I've had terrible problems with coughing lately, which may have been triggered by the reflux I'd been experiencing from radiation.  Whatever the case, the very act of coughing causes all sort of problems.  First, the j-tube is located right on the part of my left belly that contracts when I cough.  The last of the 3 stitches that was holding the j-tube in place finally popped off, so now it's just held in place with some really strong tape.  It's not strong enough to keep the thing from moving in and out a bit when I cough though, so every cough hurts.  Each cough is really rough on my entire right side (where my last surgery was) as well.  I hate coughing.  As of now, my last day of chemo is set for the 25th of November.  We're heading back to MD Anderson in Houston in a few weeks for follow up appointments, and the oncologist may recommend more.  I hope not.  I'm ready for something other than cancer treatments.  Overall I think I've done fairly well with them, but I'm really over it at this point.  Obviously, if they say I need more, I'll do more.  Whatever it takes. Some good news:  my blood counts are all looking good, especially my hemoglobin.  It's been as low as 6.4, but it's been steadily rising and is now up to 11.4 (my target is around 14).  If you haven't already, go and check out some of the new potential contestants for season 2 of the Next Food Network Star.  www.foodnetwork.com  I remember when I was one of those internet contestants, and I swear the online voting portion was as stressful as the actual competition.  I'm very interested to see how this next season progresses.  Should be a fun to watch... As always, I'm tired.  Thank you all for keeping up with me.  I know some of you have expressed concern that I'm not posting as frequently, but there's honestly not much going on right now.  Best wishes to you all and I hope everyone who celebrates it enjoys their Thanksgiving (there's no Thanksgiving in Germany...they have turkeys, just no Pilgrims) Hans   (21 Comments |Comment on this)
Wednesday, November 9th, 2005
9:07 pm	It's trying to kick my butt... After 17 treatments of radiation, they decided to switch the angles around to spare my spine from too much exposure to the stuff. Sounds good, and I appreciate them thinking about my spine, but this new 'off cord' treatment sucks. Instead of zapping me from 2 angles now, they are hitting me from 18. The total amount of radiation hasn't changed, but I now have to lay flat on my back for almost an hour. The result of that is massive acid reflux that leaves my already painful esophagus feeling like a burn victim. To make things worse, they made me listen to an hour of the best of Whitney Houston! That alone should scare the cancer out of me... I've had a handful of really rough days since my last post. I told Amy that I think these treatments are trying to break me now (not that I'm allowing that to happen). Only 6 more radiation treatments to go and 3 weeks of Chemo...I think I can, I think I can, I think I can. The hardest part mentally is that I'm just sick of being sick. I'm constantly in a state of pain or overwhelming discomfort, though the actual symptoms vary from day to day, from hour to hour. I go from being nauseated to having cramps to having my surgery site hurt like hell to sleeplessness, etc., etc., etc. I'm just not comfortable. I don't even remember comfortable... A little 8 year old girl named Alina died today in Germany from Leukemia. I didn't know her, but I've been following her story through my cousin Tobi and his girlfriend Meike. Meike is a reporter in their town and followed little Alina's story as the whole community searched for a suitable blood donor. Over 2500 people turned out in the search, but it was too late. When you have cancer, you really want to hear success stories, but of course you can't hide from the ones that don't succeed. Alina's story was exceptionally sad, but she managed to touch the lives of over 2500 people in her short life. Yet another all-too-real reminder that life is short, don't take it for granted. Don't take anything for granted. I'm unnaturally sleepy...no nap today and I'm running on fumes. Thank you all so much for keeping up with me and for your continued support. Hans (35 Comments |Comment on this)
Tuesday, November 1st, 2005
8:17 pm	Wedding bells and Halloween... First off, I apologize for not keeping this thing a bit more up to date. I've had a few ill days lately, and on the days I felt good, I didn't have time to update. So let's back up a few days... My friend Marius has asked me to be the best man in his wedding way back before I left for Texas. I immediately said 'yes'...what an honor. The ceremony was this past Sunday and as luck would have it, I felt great (Saturday was a different story). The weather was perfect, the ceremony was beautiful, the bride and groom wore smiles as wide as trailers, the food was good, etc. Very nice wedding. Marius and Jodi are now traipsing through Tuscany somewhere and I hope they're having a brilliant time of it. Amy and I have always been Halloween junkies...we love it. It stands to reason that our children would do the same, and they love it with all their little hearts. Finn was Darth Maul (from Star Wars) and Ella was a fairy. Of course Finn's mask came off in 15 minutes, but he still looked cool. I stayed home and my folks came to halp dole out the sweets. We must've had over 100 trick or treaters...good turnout. The kids made out like bandits too. I think we'll need to hide some of their loot and ration it out as rewards for good behavior. Candy in plain sight can often be a catalyst for bad behavior! The interview I taped for ETC3 (local TV where I work) last week aired last night. The interview was fine and my co-worker Kristy did a great job. It did freak me out a bit to see myself though. I know I look in mirror on occasion, but on TV I looked like a frail old man. I looked like a cancer patient...which I am of course, but it took me a second to adjust to the image on the screen. I'm looking forward to getting back to the studio and back to work. As far as my health goes, I seem to have an equal mix of good, half-good, and not-good days. Of course I can't predict what each day will bring, but I wake up in hopes that it'll be at least a half-good day. Today was one of those days...sick in the morning, OK in the evening. Much of the time, I'm simply uncomfortable. I often feel like there are a pair of large hands squeezing my insides...a steady, constant constriction. I've finished 14 of 25 treatments and I'm damn proud to come home and mark those days off with a big fat black pen. I did find out yesterday that I may have to continue my chemo for a few weeks after radiation...didn't like that news, but apparently it's not as bad when not administered in conjunction with the radiation. I was really hoping the 16th of November would be the finish line on this stuff, but it may now just be the finish line for radiation. Much to do...the bad days have been keeping me from doing simple tasks. I have a package I've been meaning to send to my friend Justin for a week now and I THINK I'm finally going to get it together tonight...knock on wood. As always, thank you so much for your continued support and your well wishes. I'm starting to see a glimmer at the end of the tunnel. Hans (20 Comments |Comment on this)
Tuesday, October 25th, 2005
8:36 pm	A day off from radiation... Hello friends... At about 8:30 this morning, I received a call from the radiologist's office. They asked me to NOT come in today...I had a day off! Yesterday they did a type of imaging on me called respiratory gating. A strange, milky-transparent looking plastic box was taped to my stomach and I was put into a CT scanner. For about half an hour, a special laser guided camera recorded my breathing by watching the box on my stomach rise and fall with my breath. All the while, the CT was taking shots of my chest. The idea is, by using this special box, they can better time the radiation treatments to coincide with my breathing. Since overexposure to radiation can fry your lungs, they want to use this technique to only shoot the radiation when I exhale. So today, they were figuring out the results of yesterday's test so that tomorrow I'll begin the new treatment. Of course, I'll have to make up the missed treatment (just like a damned test at school!), making my final day of treatment November the 16th. I had a pretty good weekend...it seems that my body starts to refresh itself the minute the treatments stop. Monday's radiation kicked me pretty hard though. Within 5 minutes of the treatment, my gut was on fire and it felt like Andre the Giant was squeezing my insides. The Dr. warned me that the effects of the radiation are cumulative. I had shed a few more pounds...down to 174, exactly 40 pounds less than the day of my first surgery. I have to increase the rate of my feeding pump to get some more calories, and when I DO feel like eating, I need to. He said I still may drop a few more, but we need to keep the weight as steady as possible. I've completed 9 treatments...16 to go. Can't wait to get there... Last night I was so weak that I couldn't even open the cap on my daughter's Fresh Fairy Sparkle Gel (that's the actual name of her toothpaste...go figure). I've also been having some pretty severe coughing/gagging sessions. I think I caught a bit of the cold that cycled through my family. I'm usually the last one in the chain, acquiring their germs about a week after the first sign of it. I don't think I chimed in my 'review' of the Corpse Bride. Excellent! I'd give it a 4 out of 5...a little slow on the front end, but the music is perfect and the whole movie is just beautiful. The kids loved it. It's nice that I feel better on the weekends...I wouldn't be able to sit through a movie after a treatment. No way. Because my illness happened within the first 12 months of my employment with ETC, the company that handles my long term disability benefits (I hate the term 'long term'...I plan on being back to work in January!) is launching a 'mandatory investigation' into my case. I had to fill out a questionnaire that would make anyone feel like their trying to con someone out of something. The questions are literally degrading and almost downright accusatory. But, I have to fill it out...it's required after 90 days leave. What really sucks is that my salary drops to 70% (still better than nothing...don't get me wrong), right as medical bills are swarming and christmas looms. We'll get through it though...just another speed bump. The whole "prove you're sick" paperwork is pretty crappy though...pretty crappy. OK my friends...much love and respect to you all. Hans (20 Comments |Comment on this)
Friday, October 21st, 2005
8:26 pm	Chemo free weekend... After finishing my 8th radiation treatment today, I went for my standing Friday appointment to have my chemo pump removed. The thing only weighs about a pound and a half, but it's a huge weight removed when I'm free of it. Of course they'll pop it back on me on Monday, but being free most of Friday, Saturday, and Sunday is a real treat. I will still be tethered to my feeding tube at night, but I sleep better with fewer tubes attached. Cool beans. The radiation has been making me sick, though not really queasy. It's more of a strange burning sensation that makes my whole gut feel rough. I'm hoping that my weekend reprieve from the stuff will give me a break from that sensation. It literally zaps my appetite. It's very hard for me to think about food, and that's totally alien to me. I don't know what I want to eat (or really CAN eat) until I see it. And immediately after eating, I just can't stand to think about anything edible. Not even a mint. I know it's all temporary, but it's strange to have spent your whole life thinking about food to simply not being able to tolerate the thought of it. My cousin in Germany and his girlfriend (should be wife)sent a wonderful care package to the house yesterday filled with German candies, a cookbook, and some other goodies. They sent along 2 bags of the original Haribo gummi bears. My Oma used to send packages to my sister and I when we were children, and seeing that gold foil package of the bears brought back those memories. My sister Sonja would fight me for the candy...she was a SERIOUS candy consumer, imported or otherwise. She always had some Spree hidden in her car or in her purse. I've yet to encounter another sweet tooth like Sonja's. For those of you who didn't know Sonja, she lost her struggle with breast cancer last year. I think about Sonja every day...not in a cancer way...but things like her love of candy, her near clinical ability to contract car fever (and then share it with me...she must've owned 15 different cars in her short life), her razor sharp wit, etc. I do wish I could share my cancer experiences with her and more importantly learn from hers. She was very secretive about her disease and the idea of a live journal like this one would not sit well with her. Then again, it may just have been the perfect tool for her to open up about her struggles with the disease. Hmm...I think I'm craving some candy now. Thanks Sonja...I need the calories! I also received a nice care package from Dan and Steve at the Food Network. They even sent me some Hominy! I've received so many cards and gifts and simple notes (electronically or on paper)...I cannot thank you all enough. I try and keep things up and cheery, but as you must know, there are days when I simply hurt...days when I wish that I could wish it all away...days when I can't really remember being un-sick. The cards and well wishes help SO much with those floundering thoughts or those cloudy moods. Thank you thank you thank you. Time to unwind. If my health allows, I'm going to take the family to see the Corpse Bride tomorrow. The whole family has been looking forward to it...we're huge Nightmare Before Christmas fans and the kids can't wait to see this film. We did manage to see the new Wallace and Grommit film last week...it's freakin' brilliant! HIGHLY recommended. Best wishes to you all... Hans (27 Comments |Comment on this)
Tuesday, October 18th, 2005
7:35 am	Routines... With the price of gas being what it is, I think we've simply opted to freeze this winter. Little Finn just left for school and when we opened the door I swear that breeze came from December. I think we'll all be sleeping in parkas when it really gets cold. I don't know how my Canadian friends do it. My internal thermostat has been wonky anyway...I go from freezing to sweating in a matter of seconds. Today will be radiation number 5. I guess I'm falling into the routine now. Mondays and Fridays are a bit longer because of the chemo-pump hook-ups, but Tuesday through Thursday are quite routine. Amy and I had to deal with parking lot attendant from hell yesterday at the hospital. This guy had all the self importance of a Winston Churchill and all the combined intellect of Huey, Duey, and Louey. I have a special parking pass that allows me to park in the emergency lot to get my radiation. This guy literally ran in the building to scream at us when he saw Amy and I heading for my chemo hookup. He was a genuine freak and we expected a confrontation with him when we left, but luckily his brain was otherwise occupied. The last thing I need when I'm going for chemo/radiation is to have to deal with some parking lot attendant with a power trip. Jeez... They say the best thing to combat fatigue is to keep active, but MAN is that hard to do. The fatigue that comes with this stuff is supernatural...it's almost like a hard wiring issue. Now matter how hard you try, you just can't seem to turn the light on past "dim". We did do a lot of walking yesterday, but I found myself just plain tired. I'm still using my feeding pump at night, so my nights are not as restful as they perhaps could be. Last night wasn't too bad though...maybe night sleep is slowy working itself back in to my routine. I hope so. Enjoy your day... Hans (21 Comments |Comment on this)
Saturday, October 15th, 2005
6:02 am	Three down... Well, I've marked off three days on the calendar...roughly an 8th of the way there. I did get sick both Thursday and Friday after treatments...no fun. The nausea and fatigue hit you like someone pouring warm milk over your head...it oozes from an "oh no...I think I'm getting sick" thought and quickly spills all over you. Thursday I as caught without my meds when it hit. Amy said the retching only lasted about 5 minutes, but it felt like 20. Friday I was prepared with my anti-nausea drug and it worked quickly. Because they're radiating my stomach, there's a high likelyhood that I'll get pukey each time, so they've now decided to pre-medicate each visit with a drug called Kytrel. Let's hope it does the trick. After hearing about my attack on Thursday, my mom equipped her car with about 200 brown paper puke bags and trick or treat tub...I think her car is prepared. I've been struggling with anemia since this medical stuff started back in July. In fact, it was the anemia that led us to the cancer diagnosis. So far I've had 5 units of blood transfused and different times to try and get my levels higher. Yesterday, instead of blood, they administered a big bag of iron. It looked exactly like Coca Cola in the IV bag...no bubbles. The whole infusion took about 6 hours. It's supposed to help with my energy level and lightheadedness, but it may take a few days to fully bind with my system. With the C. diff infection and it's awful Flagyl treatment coming to an end (I hope...), my nutritionist has given me the green light to eat any foods with exception of fried foods. I'm exercising a rare sense of restrain, however, and am easing into this whole food thing this time. Reading others' experiences on the net, it's amazing that what works for some gastrectomy patients simply can't be swallowed by others. I have a hard time swallowing foods that would seem to be ideal: mashed potatoes, pasta...even yogurt to an extent. The biggest problem is getting full too fast. As soon as you've adequately tested a food to see if you can swallow it well, you're full! That's really why I'm supposed to eat about 5-6 meals a day, but I've not quite hit that stride yet. I'm more grazing when I'm at home. Of course every time I open the pantry, the kids are right there with wide eyes wanting a snack of their own. Luckily, they love healty snacks and are as excited by a little box of golden raisins as one might be with a Twinkie. No Twinkies in our pantry... I've really been enjoying all of your comments and insights. Thanks for hanging with me through all of this. Hans (21 Comments |Comment on this)
Wednesday, October 12th, 2005
8:51 pm	Infection boy starts his chemo... I'm starting to realize that my health is much like a Rubik's cube. You may be able to get one side homogeneous, but in order to solve the whole puzzle, you may have to mess up what you've already accomplished. Such is the case with my 10 day affair with Flagyl. At first, I praised the medication as my William Tell...my hero in a pill. Within the first 2 days of taking the bitter white pills, my severe cramping began to subside and my bathroom traumas ceased. Sounds good. But the known side effects for Flagyl read like the menu at the Cheesecake Factory...it's insane! What's even more insane is that, with the exception of the RARE side effects listed, I practically have them all: fever, muscle aches, dizziness, headaches, sore throat, and a fresh crop of ulcers in my mouth. It appears that my supposed hero in a pill is a nasty little bastard that has now allowed a strain of fungus to bloom in my body. I'm now taking Diflucan to combat the fungus. I'm not up to speed on the side effects of THAT medication, but I imagine it has something to do with one's clothes mysteriously turning inside out...or perhaps my eye balls will migrate to the top of my head. Why not? Despite my growing list of ailments, we started the chemo. I have a small pump attached to me right now (through my port) that's keeping a steady flow of the drug 5FU coursing through my blood. I'll keep that pump until Friday and then they'll hook it up again on the following Monday and we'll keep doing that for the next 5 weeks. In addition, I also had my first blast of actual radiation. There's no pain, but it is really freaky if you think about it. I'm going to be zapped every Monday through Friday for the next 5 weeks. The doctors are cooking the chef. Time for some yogurt. The idea of swallowing anything sounds pretty lame, but I need the bacteria to help combat my new infection. Much love and respect to you all... Hans (22 Comments |Comment on this)
6:01 am	Maybe chemo, maybe not... Hello everyone... Just a quick note to thank everyone for the well wishes in the face of my pending chemo. Amy and I have a doubt or two that they'll start it today though. The Flagyl medication that I've been taking for the C. diff infection can have some nasty side effects...like fever, body aches, sore throat, sleeplessnes, etc. I somehow managed to get all of those, plus 2 nasty mouth ulcers. Of course, all of these side effects can be caused by chemo as well, but we've read that there can be a drug interaction between the chemo (in my case 5FU) and Flagyl. SO, I know I'll be having the radiation, but I'm not too sure about the chemo. I told Amy today that I feel like I’m at a buffet. Last week I said, “Let me have that plate full of abdominal cramping, a side of diarrhea…and…oh yeah….some terrible bloating. Thanks”. Now this week, I’m back in the line saying, “I think I’ll try some fever with maybe a side of infection for my j-tube and let’s round it all off with some muscle aches and headaches. For dessert, I’ll be having the mouth ulcers…to go.” I'll try and update the journal this evening with the verdict. Best wishes, Hans (12 Comments |Comment on this)
Friday, October 7th, 2005
10:17 pm	Port and C. diff With chemo and radiation scheduled to begin on Wednesday, it was time to have my port installed. A port is a strange little plastic disc with a long tail that gets shoved in somewhere near my heart. The disc portion sits under my skin, just below my right hand collar bone. Whenever someone needs my blood (and my blood seems to be somewhat popular) or administer medications (such as the toxic cocktail that is chemotherapy), all they need do is pop a needle through my skin and into the port. Today's procedure was supposed to be somewhat short, but like many of mythical 'short procedures' that I have been promised, it turned into a full day's event. I was awake through much of the actual procedure...it didn't really hurt, but I could certainly feel some tugging and pulling going on. They patched me up with so much gauze and tape that it's hard to turn my head. Un-fun. The cause of all of my abdominal cramping and bathroom traumas has been discovered: a nasty bacteria called C. diff. If left untreated, it can also cause ulcerations and, of course, death. From what we've learned, C. diff likes to flourish after one's GI tract has been flushed with antibiotics. With all of the antibiotics I was on in the hospital, it thought my GI tract looked like Cancun. It moved in and invited all of it's kin. Luckily, there is a medication to take care of C. diff and I'm taking that drug now. Hopefully I'll be done with this infection in about 10 days. Un-fun. I'm ready for a break...can't seem to catch one. I was really hoping for a nice calm week at home before the chemo/radiation schedule starts. The C. diff really ruined the whole 'calm-at-home' notion. Despite the un-fun elements, I have enjoyed being home with the kids, watching a bit of TV, reading through my newest copies of Gourmet and Food & Wine magazines, etc. If you get BBC America, you owe it to yourself to check out 'Number 42 at the Kumars'. Really funny talkshow. It's time for some much needed rest. I'm confident that my health will improve over the weekend. I've never been good at relaxing. I have so many projects in so many fires and that's how I like things...I'm a juggler. But it's hard to juggle when you just don't feel well. I'm just ready to juggle again. Much love and respect to you all. Hans (24 Comments |Comment on this)
Monday, October 3rd, 2005
2:24 am	The guy with cancer comes home... Hello friends, The house is dark (about 2:30 a.m.) and unfortunately, so are my thoughts. I've been plagued by SEVERE abdominal cramping that has been going on since Thursday. EXTREMELY painful to the point of tears. I was warned about the cramps, especially the first few weeks after starting to eat real food, but I had NO idea they could be this bad. I simply cannot function when they hit. Truth be told, I'm a piss-ant sick person. I hate being 'disabled' in any capacity. I only hope that Dr. York has some suggestions tomorrow that will help with this abdominal pain. It sucks. Coming home was brilliant though. Little Ella literally squealed when she saw me. She's SUCH a sweetheart. She comes to me constantly to tell me she loves me or that she's happy I'm home. Finn's been amazingly sweet as well. Every time I wince in pain, he's right there to ask if I'm OK or if he can do anything for his old man. Finn and I were walking the property yesterday looking at our plants...it's something we like to do together. We look at the fig trees, the banana trees, the bromeliads...he's very smart and inquisitive. As we were walking, he said, "Dada, I hope I don't get cancer like you and Aunt Sonja. I didn't want you to get cancer." Talk about a tear jerker...I have tears in my eyes just typing this. He's VERY aware of what's going on. The parade on Saturday was magic. Luckily, my cramps subsided for a few hours to allow me to participate. Amy and the kids rode with me in the horse drawn buggy. The whole town was there cheering and waving. It was a beautiful thing after so many weeks away in the hospital. Amy and the kids threw out about 30 pounds of candy (no joke) and we probably could've used about 20 pounds more! After the parade came one hug after another. My friends Brad and Marius were there as well. There's no way to say it without sounding like a sap, but I do love my friends and I'm very blessed to have so many good ones. This morning we went to the marble festival to check out the crafts and let the kids play a bit. This is the first year in about 13 or so years that Amy and I didn't have a booth selling my father's marble creations. There's just no way I could've done it this year. Anyway, as we were walking several people stopped to talk to me, all of them very supportive. As we were walking, we passed two smiling ladies. As they walked by, one turned to the other and said, "That's that guy with cancer." Yikes. I'm used to being called so many things...that guy from the Woodbridge Inn, that guy from the Food Network, that guy that does the local news on ETC3 (or used to), or even that guy who looks like Morrissey...but now I guess I'm that guy with cancer. Obviously I'm not letting my illness define me, but it is very strange to hear that. I don't want cancer to be my claim to fame or be the label on my forehead. Amy is upstairs sleeping like a baby. She's exhausted, and rightfully so. She's such and amazing caregiver and is constantly trying to make my life more comfortable...filling up the hot water bottle, adjusting my pillows, getting me water...anything. She's amazing... I suppose I should attempt to sleep, though I've come to dread the night. I spend so many hours with such horrible cramps that sleep only happens in short bursts. Hopefully I can get some kind of prescription to help me get through these first few weeks. Sorry to ramble...best wishes to everyone. Despite my current piss-ant mood, I am so VERY happy to be home. Hans (40 Comments |Comment on this)
Thursday, September 29th, 2005
9:55 pm	ChemoRadiation Today we met with Dr. Ajani who is our MD Anderson oncologist. He seems to be instrumental in many (if not most) of the clinical trials regarding gastric cancer and chemotherapy. We were somewhat surprised to find out that instead of the 6 months of chemo/radiation we were expecting, it looks like I'll be having 5 solid weeks of chemo/radiation and then I'm done! It's a bit more intense and concentrated, but at least I'll be DONE with it. He reminded me that the treatments are not going to be fun and I should expect to be sick. I'll be taking the treatments Monday through Friday at Piedmont Hospital, which means I'll have the weekends 'off' from treatment. Hopefully I'll feel well on the weekends. I've lost another 10 pounds for a total of 30. I'm down to 184. I've been doing fairly well with foods by mouth...had some bad cramping issues today, but things feel better now. I'm just hoping that the cramps don't resurface on the airplane tomorrow! Well, time to start packing for the trip. We have to get up early tomorrow. I'm looking forward to settling back into 'life'. After the parade, I just want to crash at the house. I need to rest in my own house in my own bed. As I prepare to go home (which I still have to pinch myself that I'm actually going home after 7 weeks), I just want to say thank you for all of your positive thoughts and prayers. I've said it before, but your messages and prayers gave me the courage I needed to get through this very painful ordeal. The pain is fading...finally! Much love and respect to you all. Hans (30 Comments |Comment on this)
Tuesday, September 27th, 2005
9:19 am	Home??? After 7 weeks in Houston, it looks as though I may be heading home on Friday.  Damn.  It almost seems too good to be true.  We're meeting with the oncologist here on Thursday (Dr. Ajani) to discuss my chemo/radiation therapy strategies and then we're flying back on Friday.  I cannot wait to see my children.  After 7 weeks, I'm sure they've really changed.  I can tell on the phone that they have...especially little Ella.  Her vocabulary has expanded exponentially.  Man...I love my kids. I'm supposed to be the grand marshall in the Marble Festival parade this Saturday and it looks like I'll be home in time to do it.  I won't be able to wave or throw candy with my right arm...the shoulder is too messed up still.  In fact, the pain from my right shoulder keeps waking me up when I attempt sleep.  The doctors said I have to take it easy with that shoulder for at least the next few months.  The muscle they harvested from my shoulder to patch the leak in my stomach is one of the muscles that you'd use to bring your arm up and/or around.  They said I would have some pronounced weakness in that side from this point forward, but after a few months I can begin to exercise it. Milestone: I had my first bites of 'real' food yesterday!  Amy and I went to the hospital cafeteria and I had 1 cup of mac and cheese for lunch.  It took me nearly 1/2 hour to get it all down...one noodle at a time!  By the time I finished it, I was full to the point of explosion. My stomach is now situated in my ribcage, so when I get full, it hurts my chest.  I was just thinking yesterday that I used to be the terror of any buffet...now, I couldn't even eat a plate full.  I also managed to eat a little tapioca  pudding yesterday.  The sensation of food is really a magical thing.  Don't ever take your food for granted!  I'm going to try a bit of oatmeal this morning.  Let's see what happens... There's supposed to be an Elvis impersonator performing in the hotel lobby today.  They like to have shows and performances at the hotel to entertain us sick people.  I'm looking forward to this one though...should be fun.  My mom would love to see this one...I'll have to snap some pictures. This town is slowly starting to wake up after the threat of Hurricane Rita.  Amy and I went to Target yesterday to pick up some soft foods for me.  The food section of Target was totally picked over, but we found what we went for.  The hospital itself is supposed to resume full operations come Wednesday.  It really is strange to witness and entire town shut down.  I do think that people are almost disappointed that the storm didn't actually hit here.  I had my first real shower in 7 weeks...it's so nice to be fully clean.  I think I'll have another one now! Hans Current Mood: anxious (49 Comments |Comment on this)