Remebering my Grandmother

Last Saturday night my Grandmother passed away. Anyone who really knows me, knows how much my Grandmother meant to me and what a big part of my life she was. I had a really special relationship with my Grandmother and I only hope that others can experience a bond like that in their lives. Needless to say it has been a pretty tough time recently and like anyone who loses someone close, all I really want is just a little more time with her. I guess now she is always with me, but our relationship was so interactive. I do not know what I will do not being pummeled with questions, being offered every item she has in her fridge, or having kind suggestions mentioned over and over again (no, you aren't nagging Gram, just suggesting).

She was an incredible woman. Sharp as a tack right up until the end. One of the hardest things that I have been dealing with was that she was doing so well recently that her passing was really quite sudden. I guess I have these grandchild fantasies but I really thought she had another 5, 10, maybe 15 years in her. She had lead a wonderfully rich life, full of love, and in a lot of respects and it almost seemed as if she had sort of just chosen her time to go. The last few months have really been an exciting time for her as she attended both of my weddings, got to see all of her boys at the second wedding, meet Eva's parents, brother, and brother's girlfriend, we had just had a really pleasant Thanksgiving with the girls, she had been dropped in on by her nephew Rick a couple weeks ago, visited by her Granddaughter Lora a week ago, not to mention visits by her boyfriend Harry as well as her other Leisure World friends. It was almost as if she had sort of seen everyone she wanted to see and it was just a good time to go. She was just at peace with the world.


This was the crew from the first wedding. One good description of my Grandmother, which I think is captured pretty well in this photo, would be that she was the biggest little woman I knew.

Here we all are at Thanksgiving. There are a few "funny" photos with the same group, but I think that there might be some sort of family privilege to see my Grandmother with her tongue sticking out.


This was taken a few years ago when we were all up in Portland for Thanksgiving. She was always so happy when her boys were together.
Her spirit and vigor certainly made her larger than life in my mind. She was just so curious about the world and if there was one way to describe my Grandmother, it would be engaging. She could really have a conversation with anyone and was always asking questions. She always had to know the business. Her mind would just move so fast and often she would be onto the next question before you had finished answering the last. Her memory was pretty amazing as well. She kept birthdays in her head and would continue conversations with my buddies that might have been started 2 months earlier.

Her home was always open to anyone and the love there was ever present. I would always just bring buddies over as we were on our way surfing or if I needed a shower and between the M&Ms and my grandmother's disposition, they always had a good time. I think I would be hesitant to be left alone with a 93 year old as her grandchild went off and showered, but somehow she always made my friends feel comfortable.

She passed in a remarkably peaceful fashion. About a week and a half ago, she had fallen in her house and had bruised her ribs just a bit. She had been having a little trouble breathing but was doing really well. Still moving around her house, eating fine, and just doing her usual thing. On Saturday morning, she was having a little more trouble breathing, my dad came over, and called the 24 hour nurse. They set her up on Oxygen and got her situated in her chair and just tried to make her as comfortable as possible. Just to show how together she was right up to the end, when my father got back from playing his soccer game sort of mid-day on Saturday, the first three questions out of my Grandmother's mouth were 1. Did you score? 2. Did you guys win? 3. Was Larry Geiss there (my Grandmothers eye doctor)? My parents stayed with her most of the day, my father shared some soup with her, and when they left for my father's soccer team party she was just sleeping there in her chair. He gave her a kiss on the forehead, told her he loved her, and was off. About 10 minutes later, Anna, a wonderful woman who has been helping my and staying with my Grandmother recently, called and had said she just stopped breathing. She went as I would imagine she would have like to go, just sleeping in her chair. No pain, no suffering. One of her greatest fears was losing her marbles and she never did. She dreaded nursing homes and really was just very lucky to go out on her terms.

On Sunday, Eva and I went down and spent time with my folks in San Pedro. We all eventually made our way over to my Grandmother's house to just take care of a few things. It was pretty hard being in her house with out her. I just kept wanted to be asked about how things are going or be updated on the family business. It just was not the same without her. We decided to go for a little dinner and ended up at one of her favorite places, Hoff's Hut. About 2 weeks ago, my father had taken my Grandma and Harry out to Hoff's and wouldn't you know, they sat us at the exact same table. My Grandma loved hot fudge sundaes so my father ordered one for dinner and we all helped out.

I would just like to say thanks to everyone who has made my Grandmother's life so wonderful over the years. Each and everyone of you who touched her life is a really special person and I truly appreciate the love that you all so generously shared with my Grandmother. She was a wonderful role model for me growing up and I can only hope to reflect the spirit, vitality, courage, fiestyness, sharpness, curiosity, genuine interest in others, love, and hope she possessed, in my life. I know that she will be looking down on each and everyone of you that she loved and will be helping you with what ever obstacles that are in front of you. I know that she will be helping me in my current struggle.

If there were some last words I would like to have said to my Grandmother before she passed, they would have been the same as the words I left her with on Thanksgiving night, "Ohh Gram, I just love you so much."
-TN

11-17-2006 through 12-05-2006 Health overview (uneventful)

Well, I have been neglecting the blog recently mostly because everything has been going pretty well and Eva and I have been trying to squeeze it all in as usual. As far as my health, things are still going very smoothly. I did not get anything on Monday the 20th (it would have only been Erbitux) because the rash was still very prevalent. I started Xeloda on Thursday the 23rd and on the 27th and 28th I got a full round of Gemzar, Irrinotecan, Cisplatin, and Erbitux. I had the usual bloating and weight gain and loss but the infusion was pretty mellow. I chatted it up with a couple of nice patients and it really is just like a little social club in some ways. I guess I have been a little tired these days but I think it is more related to our level of activity than the effects of the chemo.

I have noticed that my skin has been as soft as it ever has in my life. Eva has heard about this but it was a bit of a pleasant surprise for me. I think my leg hair is also getting a little thin and it is just a little trippy touching my leg and having it be rather smooth and enticing. Hmmm, I guess the physical effects are not all bad for Eva. Also along the same lines, Eva has noticed that I have considerably less armpit hair than before. It is just a little interesting what stays and what goes. I am wondering what I would look like without eyebrows (something that Eva fears).

Otherwise, I have had some slight nausea but my appetite is still going strong and I certainly have no problem packing it away. I have been trying to eat healthier but am still gaining (luckily I am gaining more slowly than before) and am pretty much over the 185lb mark and knocking on 190's door. The rash has come and gone over the last 2 weeks and was pretty intense at times. At one point I was pretty sure that if I flexed my pecks hard enough, zits would just start popping all over the place (I did not actually carry this out). On the blood clot front, I am still wearing the stocking and injecting myself twice a day. All in all, I feel pretty good. I repeatedly mention to the chemo nurse "If you guys didn't tell me I was sick, I wouldn't know." I guess that if you have to be sick this is probably the best way to be sick.

I went in for my infusion today (just Erbitux) and it went well. Just an hour or so but Eva and I enjoy the office so we end up hanging around a bit. My counts were pretty good - whites were high-normal, reds were just below the normal range, and my platelets were at 450K (just above normal). The infusion days where I only get Erbitux are pretty mellow. I still got my benadryl so Eva had a docile guy on her hands post infusion. I think she prefers me in a semi-doped up state. She says I mouth off a whole lot less. I don't think I ever mouth off, I am just following the example of my father and "being clever."

I will try to get some of the happenings from the last few weeks down with some photos shortly.
-TN

Weekend of 11-18-2006

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

Friday 11-17-2006

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

Thursday 11-16-2006

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

Wednesday 11-15-2006

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

First half of the week of 11-13-2006

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.

-TN

Saturday 11-11-2006

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).

-TN

Sunday 10-29-2006

I had another busy weekend but figured that I will get today down and then just add the posts as I have time. I will probably fill the last week and a half for my own benefit so check down occasionally if you are so inclined. Again, when I have not posted for a while, it is probably a good sign that I am out and about.

I was roused this morning by a startled Eva telling me that it was 7:10. Normally this would not be a problem but we were doing the LA Cancer Challenge 5K/10K and the 5K started at 8am over by UCLA. I frantically woke up George and Susy (Eva's brother and his girlfriend) and dressed and tried to get out the door. I was wondering why my phone did not wake me up at 6:30 as I have never had problems getting up with my phone before. Susy was still feeling the effects of intercontinental travel and was not up for the run so she took my usual role of couch patrol. We got out the door and we were actually making really good time and it looked like we were going to make the race when the alarm on my phone went off. It all came together. I was just another one of those idiots that got duped by daylight savings time. Eva, George, and I had a good laugh and then proceeded to Starbucks to kill a little time before the race. I could not believe that I had been taken by those stupid farmers. My mother had even reminded me the night before but I figured that the important clocks (phone, computer, etc.) would all switch themselves and which clock do I forget about? Only the one I use the most, the one on my wrist. We made it to the race with plenty of time, got our numbers, t-shirts, and tried to score as much free stuff as possible. I really do not need a Jack FM key chain but there it just something I cannot resist about free stuff. It must be some sort of inherent consumer impulse within me. We met up with my mother and father and then I got ready to go. I am still sort of supposed to stay off my leg, but I figured that this was in support of cancer research so it was worth the risk. The plan was just to walk/jog the 5K and not let my pulse get too high. Eva was wonderful enough to accompany me though it would be sort of a nothing workout for her. The run went well. I probably jogged maybe half of the race, though my jog was not much faster than my walking speed. It was a little depressing hearing my first mile split and realizing that I had completed an entire 5K in less time. No matter where you are in the race, there is always competition for you. I got into it a bit with this big harry guy that Eva and I called medvet (czech for bear). Between the walking and jogging, we probably passed each other about 10 times. He became my nemesis and I ended up leaving him in the dust by mile 2, oh-yeah. On the course I saw Ross Conklin, an old friend from Berkeley, who actually ended up finishing second overall in the 5K.

Here is a little video of me passing the bear.


My parents and George competed in the 10K and all had a decent showing. George and my mother are hard on themselves as they both expected more (such competitors). Eva and I watched for our people at the halfway point and Eva actually hopped into the race to do the second half of the 10K with her brother (what a girl). I caught up with Ross after the race and he ended up joining us all at the pancake breakfast once the 10K was done. Nothing like pancakes and sausages after running a few miles. It was really great seeing Ross and hanging out a bit with him. It made me feel like I have not entirely lost touch with the running community.

After the race, we hung out at the apartment a bit and then the four of us (Eva, George, Susy, and myself) went into Hollywood to catch a movie. We got there a bit early and strolled down the Walk of Fame and just took in all the excitement around us. I hate to admit this, but we went to see Jackass 2 and I actually really enjoyed it. I just have not laughed that hard in a while. They do some really stupid stuff (and some really gross stuff) but somehow it was really entertaining.


I stood at my post for a while on the Walk of Fame but no one had any questions for me. Maybe the one stocking threw them off.

Eva put together a nice dinner of rice and vegetables when we got back and then we were pretty ready to crash. I am still doing really well. I was glad I did not pass out during the run. Hopefully, the DVT is resolving and I will be able to start doing more activity soon. I feel I am ready to go in for a full round of chemo tomorrow.
-TN

Tuesday 10-24-2006 Where have I been?

I am sorry that I have been sort of MIA for the last week, but as many of you know, there has been quite a lot going on recently. I think I have a couple day breather here before it picks up again. Though, I will be spending the "breather" getting my infusion today and possibly tomorrow. I smile to myself a bit at the idea that my life slows down for chemo. At this point, I am glad to be going in for an infusion so I have a couple days where I have to relax. Don't get me wrong, the last week and a half had some of the best times of my life but I am definitely ready for a little down time. Again, I just feel so lucky to be in the state that I am in and still relatively normal.

I wanted to extend the most heartfelt thanks to everyone who made the wedding so wonderful for Eva and I. We had an incredible time and each and every one of you really made it so special for us. We truly feel blessed to know such amazing people and my only gripe was that I would have wanted to spend more time with each of you (maybe we should have done a multi-night celebration). Thanks also to everyone who brought a dish (don't worry this was not asked of everyone), they were wonderful and really added to the community feeling Eva and I were going for. Finally I would like to extend my gratitude to everyone who helped out before, during, and after the wedding. Considering the small number of details Eva and I actually planned, it came together really well (i.e. we decided to get Tom (the best man) a tux the day of).

There have been a lot of stories from the last week and I hope to get them down in due time. Read them if you like, skip them if not. They are mostly for my benefit anyways. I am just glad people seem to enjoy them. As far as my health, I am obviously doing pretty well. I have not been taken down by the DVT and the chemo side effects are still really manageable. I will elaborate in the other posts.

If you are so inclined, Eva and I would love to hear some memorable stories or moments from the wedding and reception. If you have the time, please jot them down and send them to evatyler@gmail.com. It can be anything from a joke to a piece of advice to someone running into the screen door. They are just for Eva and I, but the really good ones (with permission) might end up on the blog.

Just to get you guys going I will relay a short one about my grandmother. We had arrived early to take photos before the ceremony and before we got started, I said hello and chatted a second with my grandmother and her boyfriend Harry. I asked if she was excited (obviously) and if maybe the romance of it all would woo her into accepting one of Harry's many offers (oh-no, no way, sorry Harry- I tried). I then asked if she had any advice for me. She responded, "for today or for life." I replied "for today" thinking that I might miss the wedding if we got her going on life advice. She sort of leans in real close, so I lean in real close, and she says, "When you go to kiss her, make sure to pull back the veil." I burst into laughter, give her a kiss and a hug, and took off for pictures.

Any stories people relay to us will be greatly appreciated as they will just remind us of the wonderful day that brought us together (for the second time). Also, if anyone wants to relay stories about us from the past few years, feel free to email those as well. Consider it an open invitation.

Thanks again to each and every one of you for being such wonderful people and being such a big part of our lives.

Live Strong,
Tyler

Tuesday 10-17-2006

We were up fairly early as Eva's parents had a little trouble sleeping with the AC on (I think of it as background noise, apparently it is like a jet engine to them). We had a nice little breakfast at the apartment and then Eva and her parents were off to take care of a few things. Eva was scheduled to have her biometrics taken for the green card (fingerprints, photo, etc.). The appointment letter was a little unsettling as it stated "If you miss this appointment your application for permanent residency will be considered abandoned." Eva made sure she was about 45 minutes early but when she got there they could not take her palm prints because she had small blister on her hand. I could not believe it. She has to go back when her hand heals. Luckily, her application seems to be moving along. After the biometrics fiasco, they were off to order the pig which was something of a cultural adventure of its own.

My parents came up to take me to my infusion and also brought my new toy (a palm pilot). The infusion went pretty well as I just got a bag of hydration and the Cisplatin. Sven stopped by and we had a nice little chat. He reassured me that my leg was probably nothing to worry about and that it would just resolve in time. Even if the clot did move, the size of the clot in my leg probably would not be big enough to cause any major damage. Besides the treatment for if it did move to my lungs, would be to put me onto blood thinners, which I am already on. Apparently, the really worrisome clots are much bigger/longer. It was just really good to talk to him a bit. He is always such a good resource and has really been wonderful throughout this whole ordeal.

My parents and I made our way back to the apartment and I rested for a little while. I felt pretty good so we ended up all going out to dinner at Le Petit Bistro, a nice little French restaurant. I do not know why, but ever since the spinach ecoli scare, my father always seems to be drawn to the dishes that contain spinach. He also seems to be amused when each waiter has to explain that they are not serving that right now. The company was wonderful, the meal was tasty, and I was pretty pleased with how well I did post-infusion. I was basically a big blob at the restaurant and later that evening as I was just super hydrated and bloated but generally felt pretty good. I tipped the scales at 185 that night and was a little worried as I could not get my wedding ring over my fat swollen fingers (I guess I should just always have it on). I am thinking that I have accomplished what I set out to do weight-wise, and I should really be transitioning back to healthy food while trying to keep the calorie count pretty high.

I just took this picture because I am always amazed at how many pills I am on right now. 3 Xeloda, 2 prednisone, 2 zantac, and 2 advil. Add 2 doses of Lovenox in syringe form and that just about rounds out my day. I used to hesitate to take an advil. Look at me now. Keep in mind, that these are just the baseline for the day. If I have any pain, nausea, or diarrhea, I take pills for that, too.

On their way back from the biometrics/pig trip, Eva and her parents had lunch at Alpine village and picked up a slice of a few different types of cakes. It is about 3 days before the wedding so we thought we had better start evaluating our cake options. It was a fun little time as each of us sampled the different cakes and decided which ones we like the best. Eva and I really are meant for each other as our first two choices were identical.

-TN

Monday 10-16-2006

We all got up and did the usual breakfast thing on the patio, I stabbed myself with a needle, and we just took it easy in the morning. The others went out for walks and what not while I continued on couch patrol. The worst part of this DVT is the limitation on activity. I was just starting to get back into moving around a bit and even regaining some muscle mass but now I will have to take it pretty easy for a while. Then once it resolves, I will have to regain the strength I lost from sitting for a few weeks just to get back to my present poor fitness level. Maybe if I complain enough that will at least exercise my mouth.

I am at the end of my week off and ready to go in for another infusion. The rash is clearing up pretty well on my face though my chest is still covered in acne. It has even gone around to my back which it the first time it has done that. I feel good as my energy is decent, I am sleeping well, my lungs feel pretty good, my weight is good, and my stool is fairly normal.

We decided to treat Eva's parents to the excitement of an infusion so they took me up to UCLA today. I was curious about my counts and suspected that after the week off my platelets were probably pretty high which probably contributed to the DVT formation. They were at 973,000. This was even after a couple days of blood thinners. My reds were a little low but still in the normal range and my whites were high but within the normal range. Because the rash was still so prevalent, Dr. Isacoff held off on the erbitux but we were good to go for the Gemzar, Irrinotecan and I will be back in tomorrow for the Cisplatin. The infusion went pretty well. I was the only patient back in the lounge so Eva and her folks hung out with me until Eva and her mother realized that they were dangerously low on shoes. They went off to rectify the situation while George kept me company for the rest of my infusion. In an effort to maintain my weight, Dr. Isacoff brought me some pastries that were left by some drug reps. Sort-of alternative therapy in addition to the chemo. Now there is a happy guy. Check out the leg wrap. This was sort of out impromptu solution until I got my stylish jobst stocking (the wrap and stocking just provide compression to the leg which help prevent new clots from forming and helps the clots that are present resolve).

The office staff at Dr. Isacoff's office have really become quite a big part of my life recently and this picture was so cute that I had to throw it in. Everyone in the office is so kind and wonderful that I actually look forward to my infusions. I am sure I will eventually mention everyone in the office, but for now, here is one of the nurses in Dr. Isacoff's office, Allita, who happens to also have a gold medal (I figure that if Dr. Isacoff brags about her, I might as well be able to do the same) from the 1996 Olympics in Atlanta (4x400 relay team). I just thought it was kind of cool to be tended to by a gold medalist. Aside from being an incredible athlete she is just a wonderful person, always has a smile on her face, and a really great attitude. I also thought Sony was adorable as he was looking out the window (just think ewok).

After the infusion, Eva, Eva's parents, and I went back to the apartment. I hung out on the couch and they went out for a bite at 3rd stop (the local pub). I felt a little wasted but pretty good for an infusion day and begun my hydration regimen to prepare for tomorrow. Everything was fine but it was a little tight with 4 people in our studio plus.
-TN

Sunday 10-15-2006

I got to sit around the house this morning as everyone else went out to exercise. Don't get me wrong, I certainly do enjoy couch time, but I usually like to earn my couch time by doing something active first. I got to hear about how nice it was out on the trails, at least that was something. I gave myself my injection this morning which was a little intense. I decided to go to a spot where I could feel, and feel I did. It was not too bad but definitely painful (probably a 5 or 6) and just a little weird as it was the first time I had ever injected myself. Maybe this will be good practice in case I end up a diabetic after all this. The leg felt the same as yesterday as it is just a little tender to the touch and it is a bit painful to stand for a while.

The rest of the day I hung out and got ready for the next outing which was the Chivas vs. Real Salt Lake MLS game in the afternoon. I did not ask if I should go to this one, so we just got ready and went. My friend Tom Allen's buddy, Mehdi, plays for Real Salt Lake and got the whole family tickets to the game. The same friend's dad, John, is super into soccer and flew down for the game to watch Mehdi play (his wife is in England visiting family so I guess he is free to make day trips from the bay area to watch soccer games. He did a day trip to Salt Lake for the game the weekend before). We got great seats behind the goal (opposite goal from the insane Chivas fans - horns, umbrellas, streamers, and fireworks are fun and all, but I still like to watch the game a bit). It was really neat to see the attacks form as the play would approach the goal. A guy that I played with in high school, Brent Whitfield, was on the field for Chivas and actually got a goal in the first half. It was a pretty well played game and Real actually equalized in the 89th minute to make the final score 1-1. There was a little excitement on the field towards the end of the game as a "streaker" interrupted play. I was not all that impressed with this guy as he only had removed his shirt before running onto the field. He did give the security guards a bit of the run around though before being tackled and taken to the ground. The crowd gave him his due as he was escorted off the field. It was a really enjoyable afternoon. John is a much of a talker as his son and was quite a pleasure to hang out, though his attire did attest to his wife being out of town. I would consider myself man enough to wear a pink shirt, but it went a little far when the pink shirt matched the pink hat with socks that had a slight pink hew (probably because they had been washed with the reds- this was later confirmed by Tom).

After the game, we went to Alpine Village in hopes of catching a little Octoberfest. Eva has wanted to see the American take on the German celebration. We showed up at 7:10pm and it was over (it closes at 7 on Sundays). We were unimpressed as Octoberfest usually begins at 7pm in Europe. We ended up going to the restaurant there and had a nice dinner with my folks, Eva's folks, and John. Like his son, John is also a vegetarian and was subjected to the tirades of the meat eaters in the group. He took it in stride and we all enjoyed a really nice dinner. George was quite fond of the rye bread as it reminded him of home.

I gave myself another injection in the evening and seem to be doing OK with them. I felt pretty good all day and did not faint at the Chivas game which was a plus. Looks like it is going to be a busy week culminating in the wedding on Friday. It should be fun. Hopefully no disasters ensue, though I am sure small disasters would be quite entertaining.
-TN

Saturday 10-14-2006

We all got up and had another wonderful breakfast together. I made waffles and ended up packing away 3 myself (go appetite). I noticed that my right calf was hurting a little and ended up showing my father. I had been having cramps in my calves over the last couple weeks, but this was definitely different. The veins on my muscle of my right calf felt like my veins in my arms after they harden up post-infusion. When I would stand, I could feel the blood sort of fill up in them and it was pretty painful. My dad took a look, thought it might be a little clotting in the superficial veins and probably nothing to worry about, then thought maybe we better be safe and have it checked out. Later he told me he has had to change his thinking when evaluating me. He still sees me as his 25 year old, fit, healthy, male son and evaluates me accordingly. He reconsidered having me checked when he thought about what he would have done if somebody had presented a leg like mine in his office (he would immediately have sent them for an ultrasound). He sort of realized that, at this point, he needs to look at me as if I were a little old lady and I think I will get all the better care for it.

Anyways, he arraigned for me to go into the hospital and have an ultrasound done on my leg to determine whether or not the clotting was superficial or if it had entered the deep vein system. I have to say, it is nice to have a doctor in the family as I basically got to go right in to be evaluated (after the usual admitting paperwork and whatnot). Well, there was a significant amount of clotting in the muscular vein system (which is what I felt) and it had entered the deep vein system in the vein directly behind my knee. The deep vein thrombolitis (DVT) was just a short segment (maybe 1.5cm) but none the less, it was there. Well, sh*t. I asked the guy what my options were and I could either be admitted and monitored there at the hospital or start on blood thinners as an outpatient treatment. I got my oncologist on the phone (Way to go Dr. Isacoff for being reachable within about 5 minutes for a patient on a Saturday! Again, I feel I am getting awesome medical care) and he put me on lovenox (a blood thinner). He also said to elevate and apply heat to the leg. The pharmacists were very worried when they saw that my copay was going to be about as much as a 50 inch plasma but at this point it is just another drop in the bucket. Besides, it is still cheaper than a hospital stay and, if you do not have the little morphine button, hospital stays are not all that fun.

Well, I drove myself home and filled Eva and the mothers in on what was going on (they had also been getting phone updates but now got the whole story). The DVT is a little interesting because it is not really noticeable (aside from the pain in my calf which is other clotting and not even the actual DVT) and yet it can be pretty serious. The threat is that it will break away in a big enough piece that it will cut off the blood to your lungs and cause a pulmonary embolism (leg clots in your veins go to your lungs where as clots in your arteries go to your heart or your brain) which could be potentially fatal. Don't worry, I am still very emotionally stable, but in one sense, it sort of feels like someone has a gun to your head and could squeeze the trigger at any moment, or not at all. I am figuring on not at all and now that I am on the blood thinners, I have my leg wrapped and elevated, and I have cut out physical activity, the chances of the clot causing any major issues have been greatly reduced. At this point it will just be about waiting for it to resolve on its own which could take a few weeks or more.

The fun part about the blood thinners is that the medication comes in pre-loaded syringes and I actually inject them into myself twice a day. I had my father do the first one when I got home from the hospital and it was a little bit of a scene with Eva and my mother watching. Luckily, I have a 3" by 4" area on my belly that has no nerves so the first once was painless. The needle is only about 1.5 cm and the injection is supposed to put the lovenox just below the skin's surface and sort of raise a little bubble so that it can be absorbed into the bloodstream. Even though the first injection was painless, it was still a little trippy. I cannot wait to do it myself. When I think about it, I have been getting poked so much recently that another couple times a day should be no big deal.

We wanted to take Eva's parents out for a good time so we picked up some Kings tickets for the evening. I didn't want to miss anything so I asked my father if I could still go with my DVT. He said not to ask, so we just got ready and went. I wrapped my leg with an ace bandage and just tried to take it easy. At the game I would elevate my leg by resting it alternately on my wife and then my mother. The game was really fun, I love going to sporting events. The Kings got whooped but there was still a bit of decent play and even a pretty good fight. Eva thinks the fighting is the main reason anyone watches hockey in America. We all had a wonderful time and I managed to survive a hockey game with my DVT (we are still celebrating small accomplishments).

When we got home, Eva gave me my second injection and did a good job. We went back to the numb spot just to make it easy for both of us though I will need to sort of rotate around my belly as continue to receive the injections. This looks like just another bump in the road. The bummer about this one is the limit on the physical activity. I was just starting to pick it up again a bit and even regain a little muscle mass but now I will need to stay off the leg for a while. Otherwise, I feel really good. I am towards the end of my week off and getting ready to start another cycle. The rash is still going strong, my weight is good, my stool is good, I am sleeping well, and my energy is pretty good. Again, if they didn't tell me I was sick, I do not think I would know.
-TN

Friday 10-13-2006

Eva and I were reduced to the air mattress in the sewing room for the night but I still managed to get a good nights sleep. Poor Eva, though, I sort of bounced her a bit on each of my three trips to the bathroom during the night. For tonight, she will sleep on some chase lounge cushions while I continue on the air mattress. Everything seems to be going pretty well with me. I am up over 170lbs. which is really good. I think with the activity that I am putting in, some of my muscle mass is returning. Of-course, I am not putting in enough activity to burn any fat but that is not really what I am going for right now. I am just looking at my belly as a nice little reserve in case I run into a rough patch where I am vomiting for a week straight or simply will not eat anything but rice cakes or whatever. Back on track stool wise, too. Almost normal and it is oh so nice.

My parents went to take my grandma in for a check-up and so Eva's parents, Eva, and I sat down for a nice breakfast. We wanted to ease them into their trip to the states, so breakfast was Euro-style - bread with a few different spreads and a few different meats to mix and match as you choose. It was a really wonderful breakfast and good to just spend time with the new family.
We dispersed for our workouts as Eva went for a run, Eva's parents went for a walk, and I went for a bike ride. It was a beautiful morning and it felt great to get outside. My right calf was a little tender when I woke up and did hurt a bit on the ride so I just took it easy (6mi on the flats). Eva's parents saw dolphins on their walk. What a nice little greeting from southern California.

Eva and her parents got into the American swing of things and went off to the mall on a little shopping adventure. Apparently they had some good family bonding time and picked up some shoes, to boot. Eva said her father was very cute as he had a few attendants make sure that he had just the right belt. I attended to a few wedding details and then called and met Eva and her parents at a flower shop. I was really glad I did not just place the order over the phone. This was definitely a wedding detail that Eva needed to be involved in. Who knew there were so many flowers to choose from? And in all sorts of colors. After about 4 binders, 6 posters, and about 5 sample bouquets, we got a good idea of what we wanted.

Eva and crew went on home and I made a quick trip to Fry's for a deal on a wireless adapter that I could not pass up (Hey, 10 bucks, at that price why not get 2?). Once I was home, we ended up just eating randomly out of the fridge and then my parents left for the theater. It was a real interesting night as a storm was coming in and there was some lightning out over the water. Eva and I just sat out on the patio and watched it for a while. It was just a wonderful way to spend some time together and just very memorable.

Thursday 10-12-2006

I had some pretty bad knee pain last night and this morning. They just felt really weak and were sort of throbbing throughout the night and this morning it was actually pretty hard to stand and walk. Eva got this little worried look on her face as she saw her husband struggling to walk around the apartment. If this keeps up, I may have to borrow my Grandmother's walker. We chatted as she drank her coffee and the pain was not going away, so I decided to take a couple oxyir (pain meds). I have been very lucky and have only taken pain medication a couple times (outside of the 5 days after my splenectomy) but then again, it can be a little fun, so I guess I was sort of looking for an excuse. This seemed to be a good one as the pain was up around a 5 and wow, it was some good stuff. The pain gradually went from a 5 to a 4 on down to a 1 but the real fun was as I was eating my pancakes (which Eva was wonderful enough to cook for me), a wave of euphoria just sort of swept over me. All of a sudden, mid sentence, it hit me. I would turn my head and my head would follow a second or two behind. My speech was a bit mumbled (even more than usual) and everything just seemed like it was going to be OK.

I spent most of the morning catching up on the blog (while still feeling great) and then took care of a few things around the apartment. Eva did a final bathroom clean and then we were off to pick up her folks from LAX. Once the oxyir wore off, my knees seemed to be fine. I think the pounding from the boat ride to Catalina and back was probably the culprit. It was a small price to pay for a fun day.

We met the parents at the airport and exchanged lots of hugs and kisses. Their flight was pretty mellow. No overactive kids in the seats directly behind them or crying babies (these annoyances are bad on a 2 hour flight, imagine it on a 10 hour flight). Just a little travel tip - sometimes the gluten-free meal is the way to go. Miluse (Eva's mother) was pretty well fed while George (Eva's father) had to choose between a turkey burger or macaroni. We brought them back to SP and reintroduced them to LA traffic on the way. More hugs and kisses were exchanged at home between my parents and Eva's parents and then we all went out and watched a spectacular sunset from the deck. We dined on a wonderful beef brisket and potatoes, shared stories, and had a wonderful evening.

Here is the whole family out on the deck enjoying the sunset.

-TN

Wednesday 10-11-2006

I actually had a solid stool last night for the first time in over a week. It is amazing how you appreciate the little things after they are taken away from you. The previous evening, I had mentioned to my father that it might be fun to take the boat out and figured that we might just cruise over to Long Beach to get some lunch or something. Well, when we got up in the morning, the ocean looked so inviting that I kind of joked, "Why don't we just cruise over to Catalina?" My dad looked at me, looked at the ocean, and replied, "Why the F*ck not?" And with that, the plan for the day was set into motion.

We gathered our stuff, almost forgot the gps, put the boat into the water, and we were off. We did not even have to lie and tell the Cabrillo parking booth that we were conducting seaweed research to launch for free as there was no one at the booth (the day is already starting off well). The trip across was mellow - my father and I could not believe how flat it was. The chop was only about 1 foot and other than that it was just wakes from other boats. When we do the crossing, my dad usually drives and I co-pilot/navigate (point at the island) and stand up at the console beside the wheel. This allows me to take the waves in my knees and keep an eye on what is going on. I have been doing really well with the eating and actually have a bigger belly than I have ever had in my life right now. Well, this bigger belly has a bit more inertia and really moves when we bounce over waves at 30 mph. This would not be a problem except that my scar extends about 20% of the way around my waist and every time my belly would bounce, the newly joined tissue would be pulled apart. This was a little painful. I ended up putting on a life jacket and pulling the straps as tight as I could bear. The jacket then supported my belly and the rest of the ride was pain free.

We made it from the LA lighthouse to Avalon harbor in under 50 minutes, got ourselves a day mooring, and went into town. This trip was unusual for my father and I, as we almost always make the crossing in the morning, spend the night on the island, and then make the return crossing the next morning. This time we were going to go over and come back the same day and we were wondering what the trip back was going to be like (it can get a little choppy when the wind comes up in the afternoon).

A couple of express boats had just pulled in and a cruise ship was moored outside the harbor so the town was pretty packed with tourists. I got my waffle at a cute little diner by the water and then we took a walk up to the golf course. We thought about playing 9 holes but between the time issue with leaving later in the afternoon and the fact that only 3 balls are included when you rent clubs (both my father and I would need more than 3 balls to finish that course. Not that the course is hard, our gold games definitely leave something to be desired). The first tee is a little intimidating, too as you tee off from a hill, over some trees, bushes, and a road to the fairway. At the tee box there are large signs suggesting to take some warm-up swings or go down the hill and tee off from the short box if you are not up to the challenge and also reminding you that you are liable for any damage caused by errant shots. I am thinking if I hit the range a couple times, on our next trip I will probably bring my clubs and give it a go (let me know if anyone is interested). We had lunch at the country club (just the restaurant by the course, it was not very pompous or exclusive as they let a couple of guys like us in), ate outside, and just relished in what a beautiful day it was and that we actually got to enjoy it. After lunch, we leisurely walked back into town and thought we had better get on our way. We took a closer look at the cruise ship as we were leaving the harbor and then headed back out to the open ocean. The trip back was pretty mellow, too. The first 10 minutes, it was glassy. The rest of the way, the wind picked up slowly until there were some white-caps just outside LA harbor. We got a little wet from the spray off a couple waves but really the trip back was as smooth as anyone could ask for. We high-fived when we got back to Cabrillo. What a day.

After we cleaned the boat up, I tried to clean up my room in SP a bit as Eva's parents are coming in tomorrow and they will be staying in the room. I eventually made my way back up to my apartment and my wonderful wife. She is really cute these days as she is really looking forward to seeing her parents. I am also looking forward to seeing and spending time with my new parents (I just am not as cute as Eva).

-TN

Tuesday 10-10-2006

Tuesday morning I hung out at the apartment and tried to clean up a bit but mostly took it easy. for the last week or so I have been having some pretty bad cramps in my calves during the night. It is a little interesting as both the muscle on the back of my leg and the muscle in the front of the leg are balling up. It is really hard to find that one balanced spot between them where neither will tense up. I am turning into quite a whiner these days. Oh-well. My weight is still steady at a bit under 165 in the morning and a bit over in the evenings. The rash is still going strong though there are locations on my face where it is healing a bit so that is a good sign. I am always pleased when I see that my body can still heal itself fairly well. Still gassy but it is not as bad as it was last week. I also have had diarrhea the last couple nights but it continues to be only once a day and it is not all that bad. I wonder if one of these days I am going to fall asleep on the pot. I have gotten pretty close a couple times.

I actually got a break from the chemo this week and I think I was ready for it. Everything has been going really well and I think I could have handled another round but it is really nice getting a week off. I have also been off the Xeloda (pill 5Fu) for the last week or so and I will resume taking that on Thursday which will kick off my fourth cycle (though the first was only a half cycle with the platelet issues). It seems like there is no clearly defined cycle for me. The last cycle followed the "well, he looks OK and his counts are good, lets go another round" protocol. I had initially wanted to go somewhere or do something wild and make the most of the infusion free days but taking it easy ended up being much more appealing. I am a bit fatigued these days and really can only handle so much activity. I will need to rest up for the upcoming weeks and I am sure my dad and I will find something to do for his day off tomorrow.

In the afternoon, I went down to my Grandmother's house to visit. Her "boyfriend" Harry was over and another friend, George, brought over chicken sandwiches from Jack in the Box for dinner. It was a really fun meal. George and Grandma kept going back and forth telling stories about the old days which were actually pretty fascinating. Harry and I would occasionally chime in but once you get my Gram going, there is no stopping her "I remember when you could go to the movies and see a double feature and a cartoon for a nickel, and they would give you something to eat, to boot." I have read about the great depression and the war (WWII) but no school book can ever drive home what it was like to experience those times like hearing stories from people who lived it first hand. George relayed a story about courting a young lady. He had been out on a couple dates with her and on their usual route home they would pass this malt shop. He had offered to buy her a malt on both previous dates and she had declined for one reason or another. Well, he felt pretty sure that she would decline on their third date and it would be a good thing, too, as he only had about 2 cents in his pocket, a far cry away from the dime needed for one of those malts. Well, wouldn't you know she had just about gotten comfortable with him and took him up on his offer. He had something of a stupefied look on his face and had to explain that they would not be getting malts that night. Yeah, that relationship did not really work out. One of my favorite lines from my Grandmother was "We were poor, but we didn't know it." What an idea. Today everyone pretty much knows just exactly where they are and every material item that is out there. I can only hope to attain the level of contentedness that my Grandmother alludes to though I am very entrenched in this capitalistic system of ours (I do like my toys).

Anyways, my Grandmother seems to be getting along pretty well. She has had a little cough which ended up being bronchitis but she should get over it shortly. Harry has been coming over more which is good to kind of get her back to her old routine. She is asking me a lot of questions, too which is very much like her old self. Hopefully she will get some confidence back and start going out as much as she used to though she is doing just fine for a 93 year old. She says she breaks cameras but mine is still working after this shot.

After Grams's I went back to SP and had a late dinner with the folks. Mmmm...steak. Yeah, that was my third dinner of the night (I had picked up McDonalds on my way to Grams). I guess my appetite is doing OK. Again it is really encouraging how well I am eating and that I have put on weight. My body can still store fat. Way to go digestive tract! We like to celebrate the little victories in my family. I caught up on the last couple days with my parents and then stayed up too late playing with the Tivo I just got onto the home network.
-TN

Monday 10-9-2006

I got up today and was pretty stiff. My legs had not gotten that much of a workout in a while and I am certainly feeling it today. Looks like a lounge day around the apartment is in order. Things are getting a little intense as Eva and I are still getting everything into order for our parents arrival and also trying to figure out the remaining details for the wedding which is less than two weeks away. I guess, in the end, everything will work out one way or another.

I did make it out of the house to pick up some food for my early lunch (if you have an early lunch and a late lunch you can squeeze that many more calories into the middle of the day) and also did a little shopping. I used to make fun of the people with Camelbacks, but now it really is important for me to stay hydrated, especially on Cisplatin days, so I picked one up. I have become one of those dorky guys with the intense little backpacks, sucking on the straw as they walk around. Eva did get a few laughs as I was wearing it around the apartment that evening and is just waiting for the day that she comes home to find me veging on the couch in my boxers, no shirt, remote in one hand, handful of cheeze-its in the other, wearing my hydration pack, and just sucking away-straw in mouth.

I picked up some Chinese food and met Eva back at the apartment for a nice little lunch. Later in the afternoon I fulfilled my house husband duties by doing the grocery shopping. Then in an effort to try to impress my wife, I laid out the sushi and raspberries I picked up in the most elaborate manner I could think of. She always has wonderful presentation with the food she cooks for me so to maintain the competitiveness between us I thought I would try to take it up a notch. She rewarded me with kisses. We watched the news (the Jim Lehrer Newshour, not the Action 9 bloodbath/"human interest" news) together and discussed politics and had a really pleasant evening.

I am going to post some photos of the rash but I just wanted to warn you that it is a little intense. Also I have my shirt off so if that offends you, you might not want to check them out. It looks a lot worse than it is. My face and scalp actually itch much more than my chest. The rash is actually a really good sign as it means that I have the receptor that Erbitux inhibits. Also, there is supposedly some correlation between the intensity of the rash and responsiveness of the tumor. One last thing to keep in mind is that I am still taking a fairly high dose of steroids daily which is supposed to subdue the rash somewhat. I do not want to imagine what it would be like without the steroids.

Anyways, the photos are under "Rash Photos 10-9-2006" over in the archive, right above September. Check them out if you are so inclined.
-TN

Sunday 10-8-2006

I actually got up at the same time as Eva today. We slept in all the way to 7:30am. What a couple of lazy kids. Well, after I had my cheerios, we decided to change it up, and went for doughnuts. Eva is still getting used to the intense ordering that goes on in some American eating establishments. You don't mess around at the donut store at 8:30 on a Sunday morning. You have to know what you want, tell them, and pay all withing about a minute if you do not want to get the "stupid customer, you're wasting my time" look. Sure the whole exchange is rushed and a little crazy but frankly, I kind of like the efficiency and unbridled capitalism that is the local donut shop.

Eva partook of some donut holes and I was on pace to finish off the half dozen myself, but my mother guilted me into sharing one and a half donuts with her. I proceeded to relax in my donut coma and Eva and my mother went out for a run. Once I perked up a bit, I got the bikes ready and as soon as Eva got back we headed out. It was really cute how excited she got when she realized that she could go for both a run with my mother and a ride with me. What a little athlete. We walked up the first hill this time and then set out to do the ride that used to be my usual mellow ride (the one that brought out some lung toxicity about a month ago). I was feeling pretty good, we took it very slow, and it went pretty well. We broke up the ride by stopping at the chapel and meeting with the organist for our wedding and stopping at Pt. Vincinte and looking for whales (actually we just made out a bit). It was so tough for me to let other riders pass me during the ride. That never used to happen. I used to be able to at least hang with almost anybody on the road and today I was getting passed by middle aged women (not to say that middle aged women are not a force to be reckoned with on the bike).

We finished the ride off right by ending up at the 7-11 and getting slurpies. Eva spoke to her parents (I guess now they are my parents, too. Cool.) and I caught up a bit with Tiana on the phone. A good portion of the afternoon was spent on the couch which was just what I needed. We watched the movie of a trip down the Grand Canyon my father and I went on about 6 years ago. It was a private trip and we spent 18 days on the river, covering 225 river miles, with 11 other incredible people. It was one of the best trips of my life and it was cool to have Eva be able to put some visuals to the stories my father and I have told about being on the river.

We were somewhat productive in the evening as we washed the cars and cleaned the bathroom in preparation for our parents who are coming in on Thursday. We are going to try to convince them that our lives are completely organized and we are just naturally meticulously clean people. I am really looking forward having the in-laws in town. They are both truly wonderful people and a lot of fun to be around (and I am not just saying that to try to get in good with them. They already like me a lot and anyways its too late, I already married their daughter. They are stuck with me).

My parents picked up some Christmas lights (yes Christmas lights are already available and it is freaking early October) at Target which we will use to try to give some atmosphere to the upcoming reception. My mom scored some shoes to complete her wedding ensemble and we took and emailed some photos to return the favor to Eva's mother. Then we cruised up the street for some Mexican food before Eva and I made our way back up to the apartment.

I still feel pretty normal. The rash has gotten pretty bad. My face and chest are covered with acne. My face is understandably a little sore and my scalp is a little itchy. It is so hard to not pop the zits. There is just that feeling of satisfaction when you pop a big one but I try to restrain myself. Eva gives me the business if she catches me, too.
-TN

Saturday 10-7-2006

Well, my morning was just about as exciting as my Friday afternoon as I continued the paperwork jubilee and entered every explanation of benefit (EOB) into an excel spreed sheet to sort of summarize my health care situation. Then I would try to match up the EOB with the bill with the coverage I am supposed to get and try to make sure everything meshed. I remember my first look at an EOB (about 2 months ago) and it was like a another language but by now they have become pretty straight forward. Just for you folks at Raytheon, be thankful for the health coverage you have. We will see how everything comes out in the end but so far it has been pretty incredible how good of coverage I have gotten. I have the high deductible PPO plan and everything has been just really smooth. I cannot imagine not having health insurance after going through this. Because of the current situation (people not covered, the deals hospitals have with insurance companies, etc.) the medical costs are very high. Not only do you benefit with insurance by only having to pay a percentage for most treatments, but you are only paying a percentage of the lower negotiated deal that the insurance has with the hospital. Just to put things into perspective, the total medical costs (which only someone without insurance would have to pay in their entirety) for three months of care including a PET scan, a CT scan with FNA, an endoscopic ultrasound with FNA, a splenectomy, 4 day hospital stay, and about 2.5 months of chemo is approaching the six figure mark. The insurance negotiates and will pay much less than the total medical costs, and then I pay some small percentage of that. What a system. I am so thankful that the system seems to be working well for me for now.

Now onto the fun stuff...
While I was trudging through the jungle that is our health care system, Eva was getting squared away to go windsurfing in the afternoon. I met her down at Cabrillo to support her like a good husband. The wind was a little light early, but eventually picked up nicely. She is a really good windsurfer and I am just more amazed and in love with her each and every day. She had been trying to go windsurfing for the last few weekends and we were starting to think that the shop just did not want to earn any money (they need 2 people to rent to bring the truck down to the beach). Well, she finally got onto the water and I would say by the size of the smile on her face that she had a pretty good time. Those dimples are adorable!

I watched her for a while but, as the 8-year-old that I am, I cannot really sit all that long and sort of need to be doing something. Luckily, I brought my RC sailboat to keep me entertained. It is a really fun toy and actually closer to sailing than you might think. There are yacht clubs for people with model sailboats and they do regattas just like the big boats. It was a gorgeous afternoon and I just had a blast. I could watch Eva, play with my boat, and check out the pelicans diving for fish all at the same time. I have to say, my boat can move along pretty well but, once the wind picked up Eva just flew by. As the small child that I am, I got a lot of enjoyment out of scaring the seagulls with the boat.



Well, I guess I had too much fun playing with my boat because I sort of used up all the juice in the batteries. The servos did not have enough power to bring the sails in and with the offshore breeze the boat sort of started floundering about 30 feet from shore. I could have just jumped in and recovered it but I figured I would just get Eva to come in and use her board to go get my boat. Well, she was still having a lot of fun and by this time was way over away from the beach zooming around. By the time she made her way back to the beach, the boat had drifted about 100 yards away from the shore and was a little out of reach for a paddle (as the paddle back would be into a decent wind). The boat is not all that easy to transport as it is 1 meter long, the mast is 1.5 meters tall, it has these sails which reek havoc when carrying it in the wind, and it had 8 pounds of lead in the keel. Putting it onto the windsurfer and windsurfing back was not really an option. There I was, just a sad little boy walking on the beach who did not know if he would ever get to play with his boat again. I told Eva of the situation and left on a last ditch effort, hoping that it would drift into the rocks by the marina (and not to the ones on terminal island) and that I would be able to grab it before it got too banged up.

I drove over to the marina, hesitated a bit at the no trespassing sign, came up with a good " I was only recovering my boat and by the way I am on chemo and it really provides me with a lot of enjoyment" story for the marina patrol, watched the marina patrol car drive by, and then started the walk out onto the rock jetty that protects the cabrillo marina. The jetty has a about 4 bends in it and I would get my hopes up each time I was rounding one. After scrambling for quite a ways and three let downs, I spotted my boat. It had been placed up on the rocks with the sail tucked under the mast which was taken down. Immediately I thought "Eva, you are awesome! You rock!" I gathered up my boat and awkwardly made my way back over the rocks with a smile on my face as I had been reunited with my boat.

After I got back to the beach, Eva relayed her little adventure to get the boat up onto the rocks. She had sailed down to the boat, which was a little ways off the rocks, and jumped into the water. Then, much like I imagine a navy seal would do it, she frog-kicked her way over to the rocks pulling the little boat with one hand and her windsurfing rig with the other. She ditched her rig, swam the boat in the last few meters, and then had to crawl out of the water onto algae and crap covered rocks while lifting up the awkward, and now very slippery, "little" boat. She set it down nicely on a rock, then jumped back in, swam to her rig, and sailed off. I think I am the luckiest man in the world.

We spent the evening with my folks, had a nice dinner, and just talked for a while. My mom's big news for the day was that she got a dress for the wedding. She showed us all and it really is quite exquisite. Eva's parents had taken and emailed some photos of the dress that Eva's mother had bought last weekend, as well as a few other options, which really helped my mother kind of hone in on what she wanted. Well done Miluse and George. My mother was really grateful. And by the way, Miluse looks fabulous in her dress, too. The mothers have just been really funny about the dress situation and it looks like everything is working out for both of them.

I felt pretty good today. I have been sleeping more, which is nice. I now actually get up at a more reasonable hour (though I was very productive in those early hours). I have had diarrhea the last two nights. Only one session per night, no other craps during the day, and it was not too bad so I think it is OK and just part of the chemo thing. I just need to make sure to stay hydrated and keep eating.
-TN

Friday 10-6-2006

Friday was fairly uneventful. After the standard cheerios and waffle SP breakfast regimen, my father and I went out for a ride. There has been a work crew repairing the sewer on the street outside our house over the last week, and my father and I had a little dispute about the sewer system so we went over and chatted it up with a few of the workers. I was surprised to learn that the sewer system runs in pipes between manholes but then runs in troughs through the little rooms beneath the manholes. I just couldn't believe that if you opened up a manhole, you could potentially see a turd floating by but I guess that is the way it is. Our next question was, "Well, why doesn't it smell like shit?" Luckily, around us there is enough of a flow to create a vacuum that sucks all the gases along with it and really the human waste is really only comprises a few percent of the waste water content with all the other sources (washer, shower, sinks, etc.). We also learned that all of our waste goes over to terminal island to get treated before it is pumped out to sea. Well that is probably more than you ever wanted to know about the sewer system. The guy we spoke to was the city inspector. What a job - "Well, I don't really do any of the work, I just watch and make sure that it is done right."

My father and I got on with our ride and just did what has become my usual ride down to Cabrillo and back (about 5 miles on the flats). It was a pretty nice morning though there was definitely a chill in the air. First time riding in a jacket in a long time. Even when it was cold, I never used to ride with a jacket because I was usually working hard enough to keep myself warm. Now I ride slow, and need to make sure I do not over do it, so I get all bundled up, oh-well.

After veging a bit, I spent most of the day going through old mail and trying to get some bearings on where I am with my health coverage. I went through a small mountain of paperwork and finally put together my medical binders. I felt good to get everything sorted out a bit. Now I have all my initial scan reports, surgical reports, pathology, prescriptions, bills, etc. in one place and relatively organized. I am aspiring to become like my mother. I had not focused for so long on a task like that I was pretty exhausted by the evening. I think that sorting paperwork took more out of me than the bike ride in the morning.

As far as my physical condition, things are still going pretty well. The gas is not nearly as bad as it was a few days ago, though I am by no means gas free. My weight is still pretty stable as I am around 163 in the morning and 168 at night. The belly is still in effect and now I need to work on adding weight through muscle mass as opposed to through flab. The rash is going in full effect and my face and chest are covered with zits. The skin on my face is a little sore and it just feels like there is another layer of skin/puss over my face. My scalp and face are a little itchy from the acne but it is not too bad. Again, at this point it is all about survival. If I end up a scarred, deformed, fat, bald, weak, gassy little cancer-free man, I will be ecstatic.
-TN