January 2008 - Gas, Meds, and Sony

I hope all are well and everyone’s year has gotten off to a great start. Again, I am sorry for the lack of updates, you have all heard all the reasons before, so I won’t go through them again. I will go through my health a bit and then do a little tribute to Sony (with pictures), but first I just wanted to comment on our evening out last night. Now Eva and I are not wild types, we have settled into the old married couple routine very well and we like it very much. The whole bar scene seems a little pretentious to us because, well, generally, you would be going to a bar to meet someone, and we are already happy with each other, so we just sort of cut the crap and end up staying in. The big exception would be in Prague, where going to the bar is very much part of the culture and is really the place where a family will go to converse, laugh, and have a good time. Hopefully, Eva and I will be partaking in some of that action in the near future though I am going to have to find another drink. They do say that Pislner Urquell can heal you, though I think I might get my entire month’s allotment of alcohol before dinner would be served, maybe even ordered (these days I go for about one beer a week – and you know that I have been waiting this week for tomorrow’s event). Anyways, though we do not often go out to bars, we do enjoy movies quite a bit and last night cruised over to Century City to catch Sweeney Todd. Spoiler Alert : in case you did not catch the singing in the previews or note that it was an adaptation from Broadway, it’s a musical. This was news to Eva and I and though I may catch some flack from some of the guys, I rather enjoyed it. I may have even sung along a bit here and there. Well, I have been doing pretty well, health-wise, over the last few weeks though I do often have digestive troubles. I really do not remember the last week where I did not have either an episode of diarrhea or constipation, usually both. Eva and I have been trying different foods and sort of figuring out what works but it is still pretty much a mystery. On any given day, we never know if it was the chemo, the medication, or the food that was causing whatever problem I am having. It is frustrating, but we manage, and she has been incredibly tolerant and kind to me. So yesterday afternoon, I was, how would you say, ummm, gassy. I was the gas man. I remember it being a little worse one week about 15 months ago, but it was still pretty bad. We had thought about the movie in the afternoon, and I was still pretty gassy at dinner, but we decided to just go for it anyways. We figured that we would sit away from other people and it would be ok. We were a little worried that it was a Saturday night and that the theater might be packed, but Sweeny Todd had been out for a while, so what were the odds that that theater would be filled. On the ride over to the theater, every time Eva would ask if I still was up for it, usually after I had unleashed another toxic little package, I was only more determined to go and see the movie. Eva did express some concern for our poor fellow theater goers who might have spent $11 on a ticket, $10 more on food, and ended up next to me, sitting through the movie uncomfortable, unhappy, and unable to even swallow their overpriced snacks. We got there a bit early, picked up some twizzlers, and then went into the theater. I never really noticed the difference in theater size in the multiplex, but today as I was hoping for a sparsely filled large theater, I found myself walking into probably the smallest theater at the AMC in Century City (it had about a third of the seats of another theater at the same complex that I had just been to). Luckily, there were not too many people so we figured that we still would be ok. Eva and I walked up to the back corner thinking that maybe people would see the couple in the back row and give them a little room to make out or whatever. Yeah, not so. Slowly but surely, the theater filled up and, even with other perfectly good seats available, it seemed as though people were drawn to us. With every couple that would come up the stairs, Eva and I would squeeze each other’s hand and hope that they would stay low and pick a seat away from us. Each time, we were let down. By the time the movie started, we had a yuppie couple one seat over to Eva’s left, three young Asian girls in the row in front of us, and what was probably a woman and her sister (though possibly lover) one seat over to my right. Well great, I was trying to keep it in as much as I could, but I really do not think that is very healthy for me. I tried to just sit as motionless as possible and hope that the little fart parade would come to an end soon. Amazingly, it did taper off fairly early into the movie and by sort of burying my butt into the seat, I don’t think that those last little packages caused too much harm. Eva and I just smiled and mused over the situation and we were both really glad that we did not call the evening on account of gas. I wonder if there will ever be a way to communicate this in a social setting and create some sort of reasonable solution. Maybe someday, will we have a farter’s and smelly guy section at theaters but then, how will we stop the inevitable stigma that will be associated with the people who nobly quarantine themselves for the benefit of others? How will we know if the poor wives who are just supporting their little gas factories are supporters or contributors, too? Puzzling questions.


To my health… more of the same, what a wonderful thing. I continue to plug away on chemo and have generally been going in about once a week for the last few weeks. I got Avastin one week, taxotere the next, both the week after, and just taxotere last week. Nothing really dramatic has happened, which is good. No hospital stays, no freaking out the family, for the time being, at least. At my last appointment, Dr. Isacoff said I could stop taking Lovenox (a blood thinner). Eva and I were not really sure what prompted this, but if he thinks it is ok, I will gladly give up injecting a needle into my body twice a day. Don’t worry, I will still get my injection fix with Iscador, it is just that now I will be giving myself one injection every two days as opposed to five every two days. Pretty amazing to think that I had been on Lovenox now for about 15 and a half months. Add that up and it comes to roughly 930 injections. Imagine if I threw a tantrum for every injection just like some kids do before getting inoculated. They were never that bad but it was always a little taste of psychological torture getting ready to give it to myself and wondering if I was going to feel nothing today, or writhe in pain for the 10 seconds of pushing the medication. For now, I will have to pay particular attention to my body and if I feel and hard veins anywhere, get checked pretty quickly. I also have a small number of syringes that I can give myself before long flights and such. Now I do not want to get too excited about this because it does not really mean anything and I also do not want to jinx it, but my marker is as low as it has been during this entire journey. I hit 94 in December and 81 in January. This marker does not correlate really well with cancer progress and it cannot be used to definitively diagnose someone, but it is not meaningless either. Eva and I are very cautious with positive news and as such we maintain a great respect for the horrible thing in my body and hope that everything just keeps going as well as it has been going. Just for some reference, a normal human’s CA19-9 is under 40. When I was diagnosed I was at 156 and at times I got up over 600. Some people’s can go into the thousands, which is not good, but it can just as easily come down. These cancers can act in many different ways, some are like bottle rockets that burn out in a bright burst of activity and others are like smoldering fires that don’t shake you up to much, but burn soft and low and long. It takes a lot of luck to survive either type. Oddly, as well as my treatment is going, I have felt pretty crappy for the last couple of weeks. Pretty lethargic - just slow and sore. My activity level has dropped a bit, possibly coinciding with the whether, and there are just some days where I feel like sh#t. Eva usually does an incredible job of dealing with the grumpy hubby and even when I really do not want anyone touching me or moving me or doing anything to me, a few feisty kisses will almost always put a smile on my face. At my last infusion, my red blood cells were low and I ended up needing a shot (same stuff as procrit, different name). I was figuring that maybe just with my reds down, that the rest of my body was not getting the oxygen that it needed.

Another little annoyance was that I had the margins taken on three moles over the last couple weeks and those wounds were a little irritating. Last December I had 6 suspicious moles taken out. Three came back as severely a-typical (the scale goes benign, mild atypia, moderate atypia, severe atypia, pre-melanoma, melanoma) and so they wanted to take larger margins. The first pass already required a couple stitches but now they were talking about a 5mm diameter chunk of meat. Of course the three could not be done at the same time because it would be too much of an impact on the body (though I think it may be more because insurance will not pay for the second or third if it is done at the same time). The three moles were on my upper back and one was right on the biggest vertebrae in my neck. Having that spot be painful and tender was no fun. It felt like I was being hug up and a coat rack by the skin on the back of my neck. Every piece of clothing I would put on would rest heavily on that spot. Every time I would lie down or even just lean back in a chair, I would put pressure on that spot. Eva got better, but would go to hug me and put her arms around my neck and I would cringe and go into a defensive stance. Fortunately, after about a week, the pain eased away, just in time for the last chunk to be taken. The doctor did a great job and all but it was still just ate at me a bit. I did resort to painkillers a few days, yeah, that was nice. Because one of the early ones opened up after the stitches were removed, we are waiting an extra few weeks before removing these. Just don’t freak out if you see my back with about 15 stitches in it in 3 different places.

What a cute couple. I keep trying to stick my chin out for Eva so I do not look chubby, but I do not think it is working.


We did not go anywhere over the last two weekends though there was a little furry surprise that added quite a little excitement to our lives. We got to take care of Sony both last weekend and the weekend before. As pets are verboten in our apartment we ended up spending both weekends down in San Pedro at the folks house. The first weekend, my parents were away in Hawaii, so Eva and I got to play house and the game was ever more realistic with that cute little guy hanging around. I, of course, do not have any real experience raising a kid, or caring for a kid, but I think that I got a good dose looking after Sony. This dog is pampered like a grandchild and because of the heightened importance of taking good care of my oncologist’s dog, we gave this dog quite a bit of attention. Don’t get me wrong, I would try to take great care of anyone’s pet who I was watching, but when the dog belongs to your oncologist, it sort of raises the bar a bit. I cannot imagine the horror that would ensue if anything happened to that dog. That said, 95% of the time Sony is amazing. He is adorable and basically can do no wrong. About 5% of the time he sort of freaks out a bit and either wants something on a counter or wants to play or just wants to annoy the crap out of you. Luckily those times usually pass quickly and then the mellow Sony comes back. I used to think that people who were so attached to their dogs were a little crazy or maybe lacking something in their lives, but I am now one of those people, through and through. I could never understand why people would talk so much about their dogs. Didn’t they have lives? Well, look at me now. Eva and I would constantly muse over the way Sony looked up earlier that day or when he ran onto the bed or whatever. Yeah that was another thing, Sony slept with us. My former self would be shaking his head. I guess I would try to plead with my former self and make him realize how nice it is to have a little fluff ball on your feet at night and how cute it is when he licks your head to wake you up in the morning. I don’t think my former self would understand. Adorably, on Sunday of the second weekend, when my parents got to share in the Sony fun, my dad asked if Sony could sleep with them that night. Eva and I smiled and I just could not believe that this was the same man that would never let Ted, our old dog, anywhere in the house except the laundry room. Sony slept with them that night and I think everyone had a good time.

Sony takes quite an interest in the outside world. One of his favorite spots was up on the couch looking out. My parents thought this was hilarious.


Here is a lethargic Tyler. Eva was kind enough to bring me Sony’s hedgehog to help me sleep better.


Turns out that Sony wanted his hedgehog and while he was getting it, he might as well plant a couple on me.


We took Sony out for a lot of walks and he can do the once around the block thing like a champ.


Going any further distance, like on an actual walk, and he, well, is not exactly up to the challenge. We would joke that Sony can go about halfway anywhere. If we were going for a 1-mile walk, he would go like gangbusters for the half mile, and then just lie down when we wanted to turn around. If we were going for a 2 mile walk, he would go strong for the first mile and again lie down at the turn around. After this had happened a few times, I wised up and brought a backpack. It was a lot easier to carry his sorry ass back home in a pack than in my arms.


I hope everyone enjoys the Superbowl tomorrow. I will be particularly stoked if I hear that anyone we know from Europe stayed up to watch it (I did last year when Eva and I were in Switzerland). Then again, when thinking about watching a 3 hour football game at 12 or 1 in the morning, maybe the highlights the next day would be just as good.

Take Care and Live Strong,
Tyler

WARNING : there are a couple gross pictures below from when I had the mole margins taken out. If you do not want to see a chunk of bloody flesh, do not look any further down. If you do, enjoy.































Here I am all marked up and ready to go.


Here is the piece they took out. It is not all that big, but still a whole lot bigger than anything you would like to be removed from your body.

Year End Thoughts

Well, I am back, for the time being at least. I did not really go anywhere, I have just been left to my own thoughts more than I have been out and about and this usually leads to lapses in writing as, often in these situations, I really do not have all that much to share. My time since Portland has been wonderfully enjoyable and my health has been relatively stable and overall I had an incredible Christmas and New Year’s. Taking my cue from a number of television and print outlets, the passing of the year has served as a time to reflect over the year that is gone and to look to the upcoming year with hope and anticipation. What a year. I will have to admit that I cried more tears of joy and sorrow in 2006, but that in comparison with the other 25 years, 2007 was filled with a spectacular number of highs and lows. Frankly, I am stoked to be here. I feel incredibly lucky for the life I lead. My line, when asked how are you doing, of “Well, if they did not tell me I was sick, I would never know it.” Is getting a little old, which is really just another blessing. I am more than willing to deal with the awkwardness of situations that arise where people are surprised I am still around. Do not get me wrong, everyone I know has been incredibly supportive and it is their support that has really carried me through tough times, but if you look at the numbers (which you shouldn’t), I have tripled or quadrupled my readjusted life expectancy at the time of diagnosis. I just hope social security doesn’t find out how much fun I have been having. Oh-yeah, once again, thanks to all of you wonderful taxpayers. You guys rock! I have rejoined your ranks and if anyone ever hears me calling for a tax cut, I want you to slap me upside the head to shut me up. Seriously, I won’t be mad. It is just an interesting (and wonderful) point in my cancer journey, when you get a bit of unexpected stability. Here is hoping that it will continue.

Reflecting back on the year, I had an incredible time with friends and family and my new wife. I think we are more in love than ever. She still surprises me so often with some other incredibly cute little thing here or there. My parents have been stoic throughout the last year and supported us in all of our decisions. My new parents have been wonderful and have really gone out of their way to make me feel like a part of the family. Eva and I would not be doing nearly as well as we are without the never-ending love and support of both sets of parents. Thank you all. I also want to extend my gratitude to our solid friends and co-workers who have found the time to spend with us and make our lives easier. I returned to work part-time in August, and everyone at Raytheon made the transistion back really easy. It has been amazing how flexible they have been. I can only hope they will let Eva and I jaunt off to Switzerland again this year in similar style.

Health-wise, the year has been wonderfully dull. My scan in November was similar to August, which was similar to April, which was similar to January. Not too shabby. Here is to hoping for the similar scans to continue. That scan in January was a little unnerving as the cyst had actually grown about 10% since the last scan of 2006. That was a big blow to Eva and I and it took an even bigger toll because we were really not expecting it (in the previous scan the cyst had shrunk 50%, but that was also post splenectomy when a chamber or two might have been breached). After going through the January scan, Eva and I were much more cautious when getting the scan results and were a little more prepared for what might come. We tried to focus on the idea that I probably felt pretty good the day before the scan, I probably felt good on the day of the scan, and I probably felt good on the day after the scan. That was what was important. I have had good days and bad days after chemo but continue to be very lucky and tolerate it reasonably well. We successfully smuggled 1200ml of Erbitux (roughly $12,000 US) into the states which was a bit exciting and I have now gotten chemotherapy in another country (which makes me wonder if there is some pointless and nonsensical record out there for some guy who has received chemo in the most number of different countries, somebody call the Guinness people, we may have something that would interest them. Perhaps we could expand the segment into weird activities engaged in while getting chemo like Monopoly or most hot dogs eaten while getting chemo, or greatest number of soccer juggles while on the drip). I have switched regimens a number of times over the last year, but I am unsure of exactly how many times because chemo drugs are added and removed sort of at will and usually the new regimen will have a few of the old chemos. I trust in Dr. Isacoff and seem to be doing pretty well so far.

Sadly, over the year, a great number more people were diagnosed with cancer including family and close family friends. I am sorry to be extending this, but welcome to the club. I know it seems unfair, but only those who have faced this disease can really know all the thoughts and emotions that go through someone’s head after diagnosis. Our wonderful care-providers can know 99% of those thoughts and emotions, but there is really no substitute for living it. If you are reading this, consider yourself lucky. You are a survivor. It may have been only a short time, but you are an inspiration to others. Maybe you should consider starting a blog. It is a wonderful way to release some inner demons if you are so inclined. Just know that all of you are in my thoughts and prayers and that I am also thinking and praying for your care-givers. They certainly deserve more credit than they ever get. At least we have something to fight against, they have to just sit there and listen to us whine, and bring us water when we are thirsty, and a blanket when we are cold, and cook more pasta when we threw up the first batch and are still hungry and need calories to prevent weight loss.

Well that is about as much reflection as I am good for right now. Again, thank you to all of you who have made it an unforgettable year. I wish each and every one of you a fantastic 2008. Remember, years are measured more in tears than anything else, whether they were tears of joy or tears of sorrow, they were moments lived.

Carpe Vitam,
TN

Below are just a few highlights from December.

Back in the doctor’s office the day after Portland. No rest for the weary. Check out the port. Pretty sweet. This was the first time I had ever received Avastin and it was a little rough. The next few days I had tough mornings. It was as if the 5 or 6 minutes of hot water in the shower were too much and I would have to sit down before I would fall over. Usually after an hour or two or three, I would feel pretty normal and was actually able to work most of those days. Eva said I looked green a couple times. I don’t really make it easy for her during those times. I neither want pity or seclusion. I just want her to act as if nothing is happening. That is understandably tough when I look like I am about to fall out of my chair at the breakfast table. I love you, honey.


On the 15th I went down to Long Beach for the Conrad’s Christmas Breakfast. I got there a bit late (I love sleeping in with Eva), but still caught the tail end. What a surprise, my parents were there. Marty and I had competed for a number of years, but I think I am going to have to hand the title over to him. I now have set my sights on a skinny little Swiss girl who thinks she is just as quick as can be. It was really good to see Marty and his family and a number of others from the LB days.


On Monday, the 16th, I only got Mitomycin C and was in pretty good shape so my parents and I decided to go for a little walk/hike in the dog park part of Griffith park. I huffed going up the hills but managed to get my sorry butt up there. Again, it is just so hard to know that the hill that is currently kicking your butt, you could have owned at one time. It is like the decline that an older person experiences slowly over 25 years have been compressed down into about a year. I know I just have to take it easy and relax and that I am very lucky to still be able to get out and about, but there is still a little bitterness that comes out from time to time. Anyways, it was a really pretty day.


I spent the week working and shopping. I felt very American. Raytheon is wonderful because once I did my hours for the week, I would not have to go back until January 2nd. On Friday the 21st, Eva and I went for a walk that started at the same place my parents and I had hiked earlier in the week. The traffic was a bit tough getting there (even though it is pretty close) so we ended up hiking under a full moon with all the city lights below. It was just pleasant. Check out that sky.


There is downtown in the background. LA can be really pretty when it wants to be.


On Saturday the 22nd, my folks, Eva, and I went to Royce hall to watch the Nutcracker. It was wonderful though we had forgotten how much of the audience was likely under the age of 12. Never-the-less, there were some adorable little stinkers and the performance was really well done (though we do believe that there were more dolls in the performance in Prague). As we were heading back to the car, we heard this boy exclaim, “Man, those tights are so itchy.” Sure enough, it was the boy who played Fritz and it appears that his character was not all that much of a stretch for him.


Monday, December 24th
We went in for chemo and sympathized with all of the poor staff who had to work on Christmas Eve. Eva actually started my IV through my port this time and did a great job. Later in the day we cruised down to San Pedro and I was feeling well enough for a walk down to the tide pools. Somehow I managed to get this cute little critter and include the Hirshberg slogan (or at least the half I like).


Here we all are on the rocks. Just another beautiful day.


We had a wonderful dinner and to incorporate some of Eva’s traditions we actually opened up a few gifts on Christmas Eve. It was really fun. We attended a midnight service at Lakewood Community Church, which was really nice, though it was tough not have Grandma there. I still think of her often and still long for the times we spent together. I know she is still with me, but my world had just been a little sadder without her. Here we are all dolled up for church.


We took another walk on Christmas day. This time out to Jap’s cove. It was a great day.



Great sunset on Christmas.


My post-Christmas time was spent mostly playing with the various gifts I had received - a small helcopter (Go Eva!) and hovercraft (Go Mom and Dad!) though I also did quite a bit of reading and puzzling. On the 28th, I did get out of the house and went down to Long Beach for a round of Golf with Tiana, her Dad, and Steve. Steve look fierce early and had some really pretty shots but the back nine took its toll as his endurance faded. David plays with the consistency of someone who actually knows what they are doing and Tiana, well, she is just such a nice person. We had a nice late lunch after golf and then Tiana and I caught up with Ryan Barger (my best friend from middle school) at a little coffee shop. It was really nice seeing him and it sounds like he is doing well for himself.


On the 31st, Eva and I went to Tiana’s as we have done for the last few years. It was fun though I have to applaud Eva for enduring the same high school stories year after year. She thought she knew everyone, though this year presented a whole new bunch of faces. I think Eva and I have lived a bit beyond our years, which sometimes makes it a bit hard to be around people our own age. We had a great time and really enjoyed seeing everyone, but we just sort of have a little different mindset. We look at each other and are just thankful to be together to share another New Year’s, as opposed to others who are struggling with deciding whether or not to pursue another degree or live in another city or whatever. I am not saying that those are not valid concerns; it is just a little different when you are facing something like cancer. We still had a really nice time at Tiana’s and really appreciate her having us. And props to her parents for their incredible help and work. I am making a push for them to join us at the table next year. For the work they do they should enjoy the dinner as well. They’re hip, they’re with it. If they are not at the table next year, maybe I will join them in the kitchen.


Well thats about it for now. I wish all of you a great year. Some final words… Live as if you will die tomorrow, dream as if you will live forever - James Dean.

Take Care and Live Strong,
TN