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.