My name is Tyler Noesen and I was diagnosed with pancreatic cancer on July 5th, 2006. Hopefully this will allow friends and family to keep up on my progress. Note: there may be mature topics, immature topics, and gross scar pictures. PC is a tough one to beat (pretty dire stats), which is why the site may tend towards the lighter side. Laughter and a positive outlook should get me through the disease and give me the 80 years I owe my wonderful wife, Eva. Carpe Vitam and Live Strong. -TN
Eva and I headed down to Newport for the weekend just to get away a bit and also a few buddies from college were going to get together for the Cal-USC game on Saturday. We stayed at the Best Western right on PCH and it was pretty nice. It is always exciting for me to stay at hotels. On Saturday, Eva and I got a nice little breakfast at Cappy's and then checked out the surfers. We saw some pretty good rides and actually spotted a few dolphins that were making their way up the coast. We wanted to get a bit of activity in and, as I had been approved for mellow bike rides, we went and rented a beach cruiser and I rode while she ran. It was a pretty sweet ride and decked out with whitewall tires and springs in the seat. The beautiful weekend had brought a lot of people out onto the bikepath. It was cool to see so many people outside being active. By the way, you do not need to tell me how cool I look these days sporting the 1 stocking, the wide brimmed hat, shades, and hydration pack - I know. I practically had to fight off the girls on the bikepath.
We cruised down the peninsula and stopped in on my buddy Pesto. His family has a house right on the beach about a quarter mile from the end of the peninsula. It was your average incredibly beautiful luxurious home. You know, the usual ocean and beach view on one side of the house and Newport bay view on the other. Pesto and I ran together at Cal and a few other runners had come down and were staying with him for the weekend. Eva and I finished up our workout and then met up with Pesto, John Burke, his lovely lady friend, Dan Spence, and Adam Shaffer to watch the game at Pesto's place. Tran (Shaffer's lovely lady) joined us for dinner and the second half of the game. How disappointing. Cal just could not put it together. It was still fun hanging out with friends and catching the game.
After the game, we wanted to lift our spirits and what better place to do so than the "Fun Zone" in Balboa. Nothing like a little skeeball to take the edge off of a football defeat. The skeeball was intense but the party really started to get going when a few people hit the Dance Dance revolution game. Pesto moves pretty well for a big guy. I have to say I was impressed. Eva took out some aggressions on the whack-a-mole game (this time featuring alligators) though she had to stop after a couple games as her hands were in a little pain (the whacker was missing).
On Sunday, Eva and I hung out at the hotel and then met up with John and Pesto for another ride/run. It was a good little workout. Pesto, Eva, and I had a long lunch to wrap up a wonderful weekend. -TN
On Friday, the 17th I met up with my buddy Nick and we went sailing. I had not been out on the Tempest (the 22' sailboat I used to race on) since before diagnosis. It was really fun to get out on the water. Nick and I had a great time and I managed pretty well. I do not have the strength or agility that I used to but I could pull in the sheet adequately and get around OK. The weather was not exactly ideal as the wind was a little flukey it was a little overcast and foggy on the water. Once Nick and I sailed out of the jetty of Alimitos Bay the visibility actually went down pretty quickly and within about a minute we had lost sight of the ends of the jetty. How many handheld gps receivers do we own between the two of us, and how many were on the boat? 2 and 0, respectively. Yes this was the one day that both of us forgot our gps's. We really wanted to do a little sailing and figured if worse came to worse we would just sail north until we hit long beach and then make our way east to the jetty and Alimitos Bay. You always hear about 18-24 year old men making bad decisions but we felt that our judgement would be sound because we are out of that age range. All in all the sail went really well. It was a little trippy not being able to see anything but white all around you for almost the entire time sailing. The wind was fairly light though we got a couple of puffs here and there.
At one point we thought we heard a faint rumbling noise and figured that it was the waves on the outside of the breakwater (though we could not see the breakwater). The noise got louder and louder until all of a sudden, an oil tanker came into view maybe 200 yards off our port side. This was pretty freaky as those ships can destroy a small boat and not even feel it. We started really getting anxious when we could not tell if it was coming towards us or going away from us. We cleared its path and then tacked around to try to see which way it was going. It ended up that it was facing away from us and I think it was at anchor but Nick thinks it was moving slowly away from us. That certainly added some excitement to the sail.
We decided to make our way back and as we had pretty much stayed on one heading on the way out, we just followed the reverse heading on the way back. There was just enough wind to put up the spinnaker- what a beautiful sail. It may not have the same impact on everyone but for me flying the chute and feeling the boat surge forward (not that it really surged in a 5 knot breeze) is quite an experience. We did start to get a bit worried after a little while as we still could not see any land or anything that would let us know where we were. We saw one yellow buoy but there are about five yellow buoys that all look the same in that area of the Long Beach harbor. Nick was sure we were going to hit the beach on the Long Beach side of the jetty and I was sure we were going to hit Seal Beach. We just kept on the heading and, wouldn't you know, we ended up sailing right to the Alimitos Bay harbor entrance. Our actual position was basically the average of where each of us thought we were.
No day on the water is complete without something going wrong with the boat as we had a little trouble getting the spinnaker down on the way in. The spinnaker is an amazing sail when going downwind. When trying to sail upwind to the dock it becomes quite annoying as it is basically a big parachute that prevents you from making any progress to windward. Sadly, we had to resort to using the paddle to make it back to the dock (how embarrassing). The spinnaker halyard ended up being stuck and we had to stand on the dock and tip the boat over to untie and take down the sail. Things just are never as easy as you would like them to be.
All in all, great day on the water with Nick. Hopefully, I will get back to my usual self and we will take part in a few regattas next year. -TN
After the long day yesterday I was pretty exhausted and definitely needed some down time. I spent pretty much the whole day on or around the couch and it was really what I needed. On Monday, Dr. Isacoff had reduced my prednisone dose down to 20 mg a day and I have noticed that every time my dose goes down, it takes a little while for my body to adjust. When I was on 60 mg a day, I was functioning on like 4-5 hours of sleep and totally awake during the day, now I have been sleeping more like 8-10 and do feel pretty tired at various times during the day. It is pretty amazing what kinds of effects drugs can have on your body. I am still in awe at the amount of foreign substances (crap) running through my veins at any given moment these days. It will certainly be nice to detox once this is all over.
Eva came home at noon and we had a wonderful little lunch. She has been going big in the kitchen recently and I am all the more happy to be there to eat it up. After lunch, I napped and finally felt refreshed enough to do a little more than veg.
In the evening, Eva and I met Kay and her husband, Dana, at 3rd stop for some dinner. Kay works in Dr. Isacoff's office and we have been in there enough to get to know her over the last few months. It was a really pleasant evening and pretty exciting to go out with another couple. I think Eva has had about enough of the fat bald husband sitting on the couch evenings. It is still so nice to be able to just walk to the bar though we can't really take full advantage of it these days. I did have a couple sips of beer, though, which was pretty thrilling. -TN
Well, we were well overdue laundry wise so I went domestic in the morning and washed and folded a few loads. I know the guys I used to live with in Berkeley would be impressed that I even did the sheets. I would have been surprised if any of those guys washed their sheets more than once a semester.
It was my dad's day off, so he headed up and, once I finished my house husbands responsibilities, we set to figuring out what we would do with our day. I had heard about a small 3-par golf course fairly close and we both thought that would be a good way to spend an afternoon. The course was Holmby and it was definitely small but really fun and a little hilarious. It is right next to the LA country club in Beverly hills but it is open to the public and only costs 2 bucks to play a round during the week (3 dollars on weekends). The course was a little hilarious in that they somehow fit 18 holes into what is basically a small city park (maybe 5 acres). The long hole was a whopping 78 yards and the short hole was 40. There are trees everywhere and the greens are like 10 feet in diameter. Add picnickers and parked cars and the course ends up being a bit of a challenge (although, considering my father and my skill level, any course is a challenge for us). Here is my father teeing off at the 16th hole (this was one of the long ones).
The excitement of the day came when I teed off on the 14th hole and accidentally hit a guy. He was a golf pro and was ball hawking in the bushes behind the hole when it happened. The hole was pretty short (one of the 40 yarders) but I sort of got a hold of it and my ball was probably not going to hit him until it hit a tree midflight. We yelled "fore" but it was a bit late and he got it right in the calf. I apologized from the tee as he sort of hobbled off away from the bushes. He grumpily inquired what club I was swinging as the hole was only 40 yards to which I replied pitching wedge. I felt bad but then my father and I rationalized the blow as golf course justice as he probably should not have been ball hawking at the end of a fairway (or at least be a little more aware while doing so). As far as our play, it improved over the course of the round. Both my father and I posted a few pars, along side our double and triple bogeys, and I even had a birdie. We found our way into the rough a few times but we both managed to finish the round with the same ball we started with (this is big for both of us). Here I am hitting out of the bushes (yes the same ones where I hit the guy the hole before). In case golfing is not your thing, Holmby also offers lawn bowling which can be seen behind me.
Just golfing was not enough to fill the day for my father so we ended up heading over to the grove to catch a matinee of "The Departed." It was pretty violent though enjoyable and lived up to the paper's description of Good Fellas with cell phones.
After my father took off, Eva and I went to Longs to pick up a couple cards and fill a prescription. Eva's aunt, back in the Czech Republic, was just diagnosed with cancer and we wanted to send some positive energy her way. It was quite an experience picking out a card for someone with cancer when you have cancer. In some ways it was helpful because I certainly know the kind of card I would like to get and can definitely screen out the cards I would hate to receive. It is so hard to find a card that expresses "we are sorry for the diagnosis but we want to give you hope and strength for the battle ahead." The hope cards were just a little off and all the recovery cards are sort of hospital related and don't really capture the marathon nature of a cancer fight. I sort of broke down a bit when we got to the sympathy cards. It just hit a little too close to home. Eva comforted me and eventually we found a card that seemed to express what we were looking for. There is definitely a lack of cards fitting the "We heard about your crappy situation but our thoughts are with you and are hoping for the best. Now get fired up for the fight." I guess it is kind of a narrow scope. I mean most of us will have like 80 birthdays whereas only 1 in 3 of us will be diagnosed with cancer. Hallmark knows where to put their efforts.
Quite a full day and I made it pretty well considering the full round of chemo earlier in the week. I think I will need to take it easy tomorrow. -TN
Saturday, we just hung around the apartment with George and Susy on their last day. We had a nice relaxing breakfast/ brunch/lunch and just sort of recapped their stay. That night, as one last taste of America, we ate at In'N'Out Burger and then got them to the airport. It was really wonderful to have them out here and I was sad to see them go. I feel bad that Eva is so far from her family and I know how much she cares for and misses them. On Sunday, Eva and I slowly got up, had a nice breakfast, and then were off to The Griffith Observatory. It had just reopened a week and a half before so you have to get timed tickets for the shuttles but I had no problem getting tickets the day before. The other option is to walk or bike up to the observatory which we may do in the next little while. The observatory was really interesting and it was just such an wonderful place to be for a gorgeous day. You could see Downtown LA, Westwood, the ocean, all the way down Western to San Pedro, and even Catalina. Eva and I would enjoy the exhibits for a while, then hang out and enjoy the view, then more science, and so on throughout the afternoon. The Planitarium show has been redone a bit and was really enjoyable. Eva was so cute as I think she was more excited about the show than a lot of the kids were. I really like that the show still has live narration and our "guide through the universe" gave a great performance. Nothing like contemplating the size of the universe to make yourself feel really insignificant. It was tough, but we resisted the urge to inform some particularly energetic kids that, as we learned in the show, we are all made of stardust and, despite what their mother's say, they are not special.
After the observatory, we went on a little Target splurge and then had a quiet evening at the apartment. On Monday, I took care of some things around the apartment and then my father came and took me to my infusion. Everything is still looking good. Dr. Isacoff goes down his checklist and my body seems to be coping with the chemo pretty well. With everything that had been going on, I had been taking Xeloda for an extra week and had stopped last Friday. I had a few days of but he said to start again that night and stop next Sunday. Then I think I will get about 5 days off and then start again and be back on track cyclewise (it is roughly supposed to be 3 weeks on, one week off, and start about 4 days before your full round of chemo). My counts were all good. My whites were high but in the normal range, reds were a little low but in the normal range, and my platelets were at 400K which is towards the high end of the normal range. I got Gemzar and Irrinotecan and everything went pretty smooth. My dad got me home OK and we just veged until Eva got home.
On Tuesday I took care of a few things at the apartment and then drove myself to my infusion. I got a couple bags of Hydration and then the Cisplatin. I received no Erbitux this week because the rash is still going strong. Adam Shaffer took a break from his lab and came up and hung out with me for a while which was really nice. He seems to be doing well though dental schools sounds a bit rough at times. Eva put in her time at work and then ran from our apartment to Cedars (just about 5 miles) to pick me up. Go cutie! The infusion went well. I was really hydrated by the end and looked like a bloated little hamster. I added 8.5 pounds to my already plump body during the day - that’s a lot of water. We just took it easy that night and I ended up passing out on the couch.
The last week and a half has been really fun and really busy. Sorry about the blog hiatus but I have just been out and about and have not had too much time to myself. The little time I did get to myself, I spent vegging and recovering.
Everything is still going very well with my health. I still feel extremely lucky to be going through this relatively easily so far. I almost wish that there were more side effects because it would seem like the chemo might be doing more. Then I think about it and am glad that it is this way. The chemo is going to be as effective as it is going to be and if it does not matter if I suffer through it, I would prefer not to suffer. At my last infusion, I met a man who threw-up 15 times in the 24 hours after his first infusion of Gemzar and basically he has realized that he just cannot eat on infusion days. Again, I feel very lucky.
I have not had a pulmonary embolism so I can only assume that my DVT (blood clot) is resolving itself. I am still injecting myself with Lovenox twice a day. It is more of an annoyance at this point than anything else. I have resumed light activity as I was approved for slow bike rides and walks. Somehow people think I am trying to project an athletic look when I am wearing the jobst stocking. One guy thought I was some pro soccer player trying to keep my leg in tip top shape. If they only knew how far I am from my peak physical condition.
Otherwise, everything is pretty good. My weight has leveled off at a "healthy" 180 and I have been eating much more good food than junk recently (though there is really no need to totally eliminate the junk-you have to keep life worth living). I have shaved my head and, with the extra weight, can do a pretty decent Dr. Evil, "Would you like a hot pocket Mr. Bigglesworth?" Continuing the overview, my appetite has been good, I can digest food, stools good, not too much gas, no vomiting, the rash is going strong, small infrequent and insignificant pain, decent energy, and I have been sleeping well. As far as my activities for the last couple weeks... Eva and I went to San Francisco for a couple days and I got to sail in the Pro-am race of the Alliance Cup. I was basically rail meat but it was pretty awesome to get out onto the bay with a few guys from the Oracle BMW team and Larry Ellison actually skippered one of the three little races we did. As soon as we got back from SF, Eva's brother, George, and his girlfriend, Susy, came into town and have stayed with us for a couple weeks. They were treated to an infusion but as that was not all that exciting, Eva took them on a hike for infusion day number 2. We did quite a bit but the purpose of the trip was really to spend time with Eva and catch up on everything that has gone on recently. We all went to the PANCAN pancreatic cancer symposium which was a really wonderful and informative experience (Willye White gave her survivor story). After a day of pancreatic cancer we all needed something to lighten things up a bit so we went to see Borat (very enjoyable). The next evening was the PANCAN Evening with the Stars Gala - a formal dinner/ affair to raise money for pancreatic cancer. Jay Mohr hosted it and one of my father's dreams was fulfilled as Dr. Isacoff introduced him to Richard Riordan. Pretty incredible dinner but, then again, how could you go wrong when you pile shrimp on top of fillet mignon.
Eva had to work during the second week they were here, so they decided to head out to Joshua Tree for a few days to do some climbing and ended up having an incredible time. At the same time a couple of my friends from college (Bubba and Elizabeth) came into town and we all headed out to Catalina for a couple days. It was a great trip as the Santa Ana's kept the seas super mellow and it was just warm and beautiful over there. We got a good look at some dolphins on the way back - I love dolphins.
Throw a few nice dinners, a King's game, and an infusion into the mix and you can see that I have certainly been able to fill the days. I think things will settle down a bit now and I still would like to get away for a few days and just spend some time with Eva doing nothing. We will see. Somehow, whenever I think things will settle down, something always comes up (usually it ends up being pretty fun, so I can't complain).
watch the game at Pesto's place. Tran (Shaffer's lovely lady) joined us for dinner and the second half of the game. How disappointing. Cal just could not put it together. It was still fun hanging out with friends and catching the game.
intense but the party really started to get going when a few people hit the Dance Dance revolution game. Pesto moves pretty well for a big guy. I have to say I was impressed. 
Eva took out some aggressions on the whack-a-mole game (this time featuring alligators) though she had to stop after a couple games as her hands were in a little pain (the whacker was missing).
