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

Thursday 10-5-2006

Today was my 3 month anniversary from diagnosis. What a crazy three months it has been. If you had spoken to me 4 months ago, I would not have been able to predict 10% of what I have been through. The last 25 years I would consider myself to have lived pretty even keeled. I have definitely been through some pretty amazing things, but my disposition and emotional state was always pretty stable and general mood contented. The highs and lows that I have gone through (not to mention my family) were like nothing I had ever experienced before. I think back and just shudder at the thoughts that went through my head during that first week after diagnosis. There were times where a random commercial showing a father and son playing in the park would put tears in my eyes. Well, the tears still come a lot more easily, but I am in a pretty good place right now. So far things have gone as well as I could hope for. We have a good plan, the plan is being carried out, there have been some minor hiccups but nothing we have not been able to deal with, I have complete confidence in Dr. Isacoff and the medical care I am receiving, and I am looking past this and planning my future with Eva.

In the morning, I took care of a few things around the apartment and then headed down to SP as it was my dad's day off. He was working in the backyard, as usual, and a neighbor Rosemarie was keeping him company. It was a gorgeous day and just really nice chatting with Rosemarie while sitting in the new swing in the backyard (by the way, open invite to check out what a good job my father has done on the backyard. Just pop in, he will be happy to show you around). We spoke a bit about my treatment and she expressed how the nausea and vomiting would probably make her elect to not go through chemo. Again and again, I feel so lucky for the relatively few side effects I have gone through so far. People should know that cancer treatment has changed so much over the last 5-10 years and it does not have to be like the horror stories we all think of when we hear "chemo."

In the afternoon, my father and I headed over to Long Beach to check out the Aquarium of the Pacific. It was a really fun outing. My dad said that since I have not been scuba diving or snorkeling in a while, this would be the next best thing. That little comment just fired me up a bit to go diving but, you know, you do see a lot more fish when they put them right there in front of you (I still hope to get back into the water sometime soon, maybe after the wedding). The Aquarium has expanded quite a bit and has really wonderful exhibits of all sorts of fish, lots of touch tanks, and they even had a few animals. My father and I splurged and bought the $2 nectar to feed the lorikeets (something my cheap-ass never would have done in the past) and it was awesome. It was just a lot of fun to have a couple birds sitting on your hand and drinking the nectar. The video shows my father with his buddy "Oscar."

Overall, just another wonderful day with my father. Later that night we met with the caterer to hammer out some of the details. We had pretty different visions for what the reception is going to be like. Somehow, my definition of "low-key" did not include a full bar or lobsters for everyone. Don't worry, there will be plenty of Pilsner Urquel. If you need something stronger, bootleg it.

Just a little rant on the stats...

Eva had mentioned how a decent percentage of people who are diagnosed with cancer and need chemo, refuse to go through the treatment. Not that I put much weight into the stats anyways, but all of those people are included and only make the numbers look worse. If I look at the smaller groups of people, those who choose to go through chemo, those who have access to the very latest treatments, and those who can actually afford to get the latest treatments, I really fall into a very fortunate subset of the whole population that has been diagnosed with PC. The numbers on that subset are unknown (and probably still not great) but I still feel like an incredibly lucky person to be where I am amongst those with PC. It would be nice if more people were in that subset, then, not only would more people survive this disease, but the numbers would start looking a little better (If you have lots of free time, write Bush concerning the state of health care coverage in the US).

-TN

Wednesday 10-4-2006

I actually got some decent sleep last night as I was basically out for the night at around 8pm. I was still up at 5am but that's just how it is right now. I felt decent all day but was definitely a little fatigued and my stomach felt just a little off. It was not really nausea, but it was not exactly right either. I was never really hungry during the day but I still made sure to eat a lot and food still tasted good when I put it into my mouth. I can feel my tongue starting to get a little raw around the edges and some tastes are getting a little more intense. Towards the end of my first full cycle, I did experience some taste changes which were pretty trippy. I mean when you are expecting BBQ sauce and it tastes a little like wasabi, you know something weird is going on in your body. The rash is getting more pronounced. Go Erbitux!. My hair is thinner than before but I have not really lost much recently. One plus is that I have been saving money on hair gel for the last few months. I am getting a little worried about my appearance for the wedding. What will Eva do if she sees a fat, balding, acne covered man at the alter? I guess that, even if she runs, it does not really matter because we are already married. Looks like I pulled a fast one on her. I cannot say how happy I am that we already have some really nice wedding photos.

I had to make a trip back to UCLA today to have some blood drawn and tested to make sure my liver and kidneys are handling the Cisplatin acceptably. There had been a bit of a miscommunication and apparently I was supposed to have done this the last two times I got Cisplatin as well. They are checking to make sure that the Cisplatin is not just sitting in the kidneys and even if it is, all they do is give you another bag of hydration. I was pretty hydrated and definitely flushing things out so I am sure that everything was fine after the first two doses.

After the doctor's office I met up with a couple friends for lunch. Mike V. and Nick who I have known since high school, maybe even middle school. Mike is currently working on his PhD in math at UCLA and Nick is an electrical engineer working at a company in Santa Monica. We went to a really nice little french bistro and ate our sandwiches in their little patio in the back. Good food, wonderful atmosphere, and there were even a few characters at the other tables. One guy looked a bit like Howard Stern and a few others were just typical LA types.
Nick got to vent a bit as he has been working pretty insane hours for the last few months. He said the usual development time for an application for his company is around 6 months and somehow the sales department of the company committed to completing a project involving a suite of 7 applications in 3 months. Hmmm. Maybe the development team should have been brought into the loop when the deal was made. All in all, he seems to still be keeping it together and enjoying the few hours he has to himself each day. Mike is just plugging away at his research and it seems to be going well, though slow. He is taking a seminar from a professor that just won the Field's medal which should be a wonderful opportunity for him to interact with an incredibly intelligent man. It was a very pleasant lunch and good to catch up a bit with friends.

After lunch, I did the grocery shopping like a good house husband and then just veged on the couch like a lazy house husband. Eva and I had a little dinner and then I fell asleep on the couch at about 8pm. My energy was definitely a bit down but I guess that is to be expected.
-TN

Tuesday 10-3-2006

Just wanted to say thanks for the comments. It is really good to get some feedback. This whole blog has been just very therapeutic for me and I am stoked that people have told me they have gotten some amusement out of it as well. I was expecting it to be much more medical but so far I have been just extremely fortunate to be able to keep doing fairly normal things. Hopefully that continues. I guess I have been a little candid about some of my bodily functions but they are just another part of this whole journey. Besides, now you know, the next time you see me, you might want to hold your nose.

At 4am I was wired. I lied there for about a half hour and then just got up and start playing around on the computer. Google has been really stepping it up lately. Between gmail, blogger, and their new calender and spreadsheet tools, I have to say I have been pretty pleased.

I spent the morning taking care of random things and trying to hydrate and then Eva and I went back to UCLA for the rest of the chemo for the week. I am running a little short on veins so I got it in the vein on my bicep. It was the first time I had been hooked up above the elbow. One of the nurses commented that I was looking a little "huskier" than when I started so I replied "Are you calling me fat?" I told her I was just trying to be a good patient by following the doctor's orders of cake, cookies, candy, ice cream, pasta, potatoes, and rice. The 15 pounds I lost after surgery (nearly all muscle mass that deteriorated) has been replaced by 15 pounds of fat and I am definitely a little husky these days. I look at this as a really good sign though. My body is still digesting foods, I can add fat, my appetite is good enough to gain weight, and now I am getting a bit of a cushion in case I go through a rough spell (vomiting and/or diarrhea). Some of the PC stories on the web are pretty gnarly about guys losing like 30-40% of their body weight. At that point you are at as much risk of starving to death as dying from the cancer.

The acne is returning which is also really encouraging. Dr. Isacoff said the prednisone should control or reduce it considerably but it is still good to see some zits showing up. There are a few on my face and a lot on my chest. By the way, getting a rash on your face and chest is an indication that you have the receptor that Erbitux (a monoclone antibody) inhibits. The more rash you get, the more likely the tumor is to respond. When I got the rash during the first round of chemo, we were all still pretty rattled by the diagnosis and had been reading a lot about coping, I remember saying to my mother "Ance is hope." What a concept, needless to say, it was a pretty touching moment.

I was the only patient in the lounge today so Eva made herself comfortable in one of the lazy boys and we watched a Seinfeld together. We also had plenty of time to play with Sony. That dog is so cute. It is also cute to see my darling wife, play fighting with Sony on the floor. She was deprived as a child and never had a dog. Although from the stories I hear about her and her brother's care of their hamster, I do not know how long a dog would have lasted.

As usual, I was pretty bloated by the end of the day with all that water in me. I had a few minor cramps, but nothing bad. Eva says she can really see the water as my cheeks are just bigger at the end of the day when compared to when I get up. I had some more speatzle (that is really good chemo food - fairly plain, has some substance, just easy to get down) and then crashed out at about 8.

-TN

Monday 10-2-2006

Well, another early morning. Luckily, we got to bed earlier last night, so I actually got a decent amount of sleep. My mom was heading out for a run so Eva and I decided to join her. This was my first run since the lung issues but I felt pretty good on the bike the last two days and figured I was up for a jog. We all walked up the steep hill and then just started really slowly. We hit another slight incline and I just felt that I was breathing a little too hard and I started to fall behind. I was just dropped by my wife and my mother on a run. What a humbling experience. Of-course, I was the one wearing the Cal track and field t-shirt. What a way to represent the team. We decided to go two different routes (mine was much shorter) and then meet up again towards the end. I was basically going a snail's pace, but the jog went pretty well and it was really pretty out on the cliffs.

When we got back to the house I made waffles and we had a nice little breakfast with my mother. I am usually good with one waffle but today I was feeling pretty hungry and a little ambitious so I went for a triple waffle. Three waffles stacked up and topped off with some chocolate chips and syrup. Mmmm. I actually put it away but then had to take a few minutes after I entered a bit of a food coma. Eva and I always enjoy breakfast with my mother. It is just a nice way to start the day.

In the afternoon, Eva and I made our way up to UCLA for another infusion. I thought I was only going to get Erbitux but my counts looked good so we went for another full round. I got Gemzar and Irinotecan and will get Cisplatin and Erbitux on Tuesday. My reds were slightly below normal, my whites were high but within the normal range, and my platelets were at 188,000 which is normal. I got the infusion in the lounge and my buddy who is on easy street was there. We chatted a bit but mostly I just read and listened to my ipod. He behaved himself and Eva did not have to open a can (though I think she was just looking for an excuse to do so). The pic is of me as I am getting my infusion. The IV may be dripping the "medicine" (toxic cocktail) straight into my veins but that did not really hamper my appetite. Pretty good ad for Cheeze-its, eh?

After the infusion, I did have some pretty bad diarrhea but the rest of the night I felt pretty good. I am always a little washed out afterwards but it was not too bad. Eva and I had a really fun intellectual conversation and taught each other about our respective governments. Did you know that Switzerland is a direct democracy (basically the closest government to a true democracy in the world) and the entire population can vote on every law? 50,000 signatures and the item gets onto one of the monthly ballots for the whole nation. Its amazing that anything can get done over there. Also, after all the effort we put in for Eva's green card, for me to get basically the equivalent to live and work in either Switzerland or the Czech Republic, it looks like it is one form and seems like it can be done in an afternoon (actually both consulates are on Wilshire, sort of by UCLA). Too bad it is just so nice here.

Finally, I did make it through the day without coughing, so my nipples are intact.
-TN

Sunday 10-01-2006

The start of October. Only 20 days until the wedding. Eva and I thought that it might be time to start finalizing some of the details. We spent some time figuring out food as well as deciding on which songs we would like the organist to play. We took it pretty easy the whole day and just sort of recovered from Saturday. I always enjoy the movie marathon that TBS, TNT, and USA broadcast on the weekends. Sometimes you can be watching 3 mediocre movies all at the same time. Now that is some good vegetating.

In the afternoon, Eva went for a run and I took off on another bike ride. I went the same route as the day before but, because I left in the afternoon, the wind made the ride a bit more difficult. My muscles and lungs were feeling good so I decided to give the bottom part of Anchovy a try on my way back to the house. The bottom part is about 1/5 as long as the top part which was were I sort of over did it. I made it up fine but Eva still gave me a playful scolding when I got back. She said if she heard one cough the next day, she would twist my nipples off. I like my nipples so I think that if I feel a cough coming I will have to run to the bathroom. I may not be fast right now but I can still try to at least look fast.

Eva got into a cooking mood in the afternoon and had made a strawberry crisp as well as spaetzle (a German doughy side dish sort of like gnocchi in form). I picked up a Coho salmon fillet (wild of course, shame on you who eat farmed salmon), my dad added some vegetables, and we had a wonderful dinner out on the patio. We even popped a bottle of the bubbly for no particular reason. After all, champagne is meant to be drunken. We toasted to the upcoming wedding and just to life in general. I had my one glass for the week and ate the rest of my family under the table. I am pretty pleased with the amount of food I can pack away these days.

Again, I felt pretty good today. Still gassy. I think it is worse when I eat greasier foods so I am trying to continue the transition back to more healthy food (while still keeping my calorie intake high). I really have not noticed much difference being on or off the Xeloda (I stopped last Wednesday and will resume this Thursday). My gums were a little tender towards the end and seem to be OK now. On the last cycle of Xeloda (about 4 weeks ago) I did have some mouth sores but they went away during the following off week. I am starting to look like a drug user as I have a couple of bruises on my forearms from the infusions. My veins tend to harden up after an infusion but luckily I still have a lot a veins that are ready to go. The first time it happened I was a little worried about a blood clot going to my brain or something but they tell me it is pretty common for the veins to harden up and pretty uncommon for a clot from the arms to do any damage to the body. My arms do get a little sore with a few hard veins and it is a little trippy right now because about four or five are pretty solid. Well, enough whining. I am sure they will find a good one for tomorrow. Worst case, I'll get a port and then I might actually feel like I am a cancer patient.

Don't get my father started about the neighbors and the car situation in our neighborhood, but I just thought this had to be shared. I mean nothing really completes the look of a truck like a big set of brass balls.

Live strong,
TN

Rash Photos 10-9-2006

Here are a couple rash photos. Why Eva is still with me, I do not know. I mean the ance is pretty bad plus, look at me, I am pudgy (ok, fat). All I can say is that she is so wonderful and I am so lucky to have her. She even still kisses and cuddles me. Yeah, so I also have not shaved in a while for fear that I might bleed to death. Enjoy.

-TN