Summer update

Well, it has been a long time since I have updated. Sorry, about that. I have just been slacking though I suppose I have a few pretty decent excuses. Sorry about the lack of pictures. I have not been taking many recently but will try to find a few in the next few days. As far as my health, I am doing pretty well. As well as we could hope for considering everything that has gone on. I think that around my last entry, around May, I had stopped plasmapheresis but was continuing on dialysis. I am still doing dialysis though we have made a few adjustments and it is not quite as much of a burden as before. Right around May, I also started back on chemotherapy though we have tried to limit the drugs to those that won’t do further damage to my kidneys.

Because it has been a while, here is a little summary for the year. In February, I came down with Hemolytic Uremic Syndrome (HUS), which was caused by Mitomycin C (a chemotherpay). This syndrome causes your platlets (the part of the blood that helps it clot) to clump up and stick to the walls of your capillaries. Then, as your red cells go by, they get sliced up. All this debris ends up in the kidneys and can cause them to shut down. When your kidneys don’t work, you have trouble processing water, controlling your blood pressure, and balancing the electrolytes and minerals in your body. To stop the HUS, you need to exchange your plasma to try to get rid of the antigen that is causing the clumping. Dealing with the kidney problems invokes dialysis. We seem to be out of the woods, HUS-wise (though I am still a bit paranoid that it might come back) but my kidneys do not seem to be recovering. There was a chance that they would heal and start working again but it seems less and less likely that they will wake up.

One big improvement in my quality of life was that I have started doing dialysis at home. If you have a decent amount of dexterity in your hands and average vision, they can actually set you up at home. The machine is not all that big, it occupies a spot next to my comfy chair by the bookcase, but the supplies take up a lot of room. The first delivery was basically a palette of stuff. Like at Cost Co, that kind of palette. After a few weeks of “the box corner,” Eva and I went to Ikea to find some storage solutions. It is amazing how much crap you can put away in the right shelving system. Go Ikea! The huge advantage of dialysis at home is just the flexability. Before starting at home, I had my slot at the dialysis center, so every Monday, Wednesday, and Friday at 3:30pm, I had to be in my chair. Now, I just have to get 4 sessions done every 7 days and I can do them whenever I want. If Eva and I want to do something in the afternoon, I can dialyze in the morning. If we want to go somewhere for the weekend, I can sort of piece together a few days by doing a few sessions in a row. It is really liberating to determine your own schedule, well, as liberating as it gets as a dialysis patient. Another huge advantage is the feeling of self-empowerment. I enjoy participating in my own health care. It makes me feel like I am contributing to my own well-being. Some of the nurses in the center have stories about what they call “dialysis crazy.” A lot of people get fed up with going to the center and having to be cared for and end up lashing out at the nurses. Next time you are in a center, look around for the big nurse that is usually there to keep things under control. Hopefully, dialyzing myself will prevent “dialysis crazy”. Eva is too cute to be yelled at.
Another big change is the access that is being used for dialysis. Since February, I have had a perm-a-cath (two tubes coming out of my body that go into my right jugular vein to allow blood to leave and return to my body). In July, I underwent a minor surgery to create a fistula in my left arm. A fistula is where an artery gets connected directly to a vein, bypassing the capillary system. This allows for some fast blood flow and is used for dialysis. Since most of my veins were thrashed from my first year of chemo, they had to use my basilic vein (the one on the outside of your forearm). They cut down the back of my arm, move the vein to the inside of my forearm and hooked it up to an artery. When you feel the spot where they joined the vein and artery, you can feel where the blood flow goes turbulent and can tell that the blood is just rushing by. “How will this be easier than a couple tubes?” you might ask. Well, at first it is not. Each time you access it, you have to stick yourself with a needle, a big needle (15 gauge). The size is similar to the lead from those big pencils in elementary school. Needless to say, this can get a little messy. I have ruined one shirt and almost passed out a couple times. I can handle seeing my own blood but a couple times it has been a lot more blood than I would have liked and I got a little lightheaded. Eventually, by using the same hole to access the fistula multiple times in a row, you can create a buttonhole, something like a pierced ear. After the buttonhole is created, you use blunt needles and it, apparently, does not hurt to access your fistula. Aside from being less likely to get infected, the big draw of a fistula is that it is ok to go into the water. I have not been submersed in water since February. No ocean, no surfing, no waterskiing, no pool, no baths (aside from sponge baths), no showers (without a bunch of preparation and plastic covers). People do not appreciate the simple pleasure of water. Because my fistula is looking good and we have had no problems accessing it over the last two weeks, I was supposed to get my catheter out today. Unfortunately, the surgeon was held up with complications during another surgery so it got pushed back to this Wednesday. It really would not have mattered because I am on a 5Fu pump (chemotherapy you get to take home) that is going into my port-a-cath, which would have prevented water play anyways. Hopefully things will come together and I will lose the perm-a-cath on Wednesday and get rid of the pump on Thursday and maybe go into the ocean this weekend. I am not sure how long my body will need to recover from getting the catheter out. They told me that they remove it in the office and basically just pull it out. I am a little worried that I will be on the floor with the surgeon’s foot on my shoulder as he yanks the tubes out of my body. I am sure the technique is a little more refined.

Otherwise, my body is doing ok these days. I have good days and bad days. On good days, you almost cannot tell that I have cancer and failing kidneys. On bad days I feel pretty miserable, throw up, don’t eat much, have huge ankles (retain water), and probably don’t do much more than guard the couch. I have thrown up more in the last few weeks than ever before in my life. Luckily, Eva has given me a few tips like relaxing my throat when it comes up. I used to and am still a pretty violent thrower upper, but relaxing tends to make the episodes a bit more tolerable. A couple nights ago I slept through the whole night without getting up to pee, which was a first in about 10 months. That was sweet. My average is probably about 3 pit stops per night – not very restful. Eva and my parents graciously listen to my complaining and take wonderful care of me. I could not imagine going through this without Eva. She is so solid. Like everyone, we have our quarrels (most are purposefully started by one or the other), but I love her more than anyone can imagine (probably more so when she is baiting me).

I have been pretty busy keeping up with doctor’s appointments, so I have not been able to have all that much fun out and about. Eva and I did get down to Temecula for a weekend and also up to Ventura. I hit a couple dodger games, have seen some friends, and fished a few times. A number of times, Eva and I would go to the beach and I would watch her surf. She is coming along really well and I cannot wait to get back into the water with her. That has been my main goal over the last few months. Get back into the water. When we go to the beach, I am like the little Granny on the sand – all covered up with an umbrella and blankets. I try not to scare the kids but sometimes they are just a little too timid around the beach hermit. When I am not on the pump, I have been feeling well enough to ride my bike as Eva runs. Recently, we have been getting into Jeopardy and the competition is pretty fierce around here. If you decide to join us, make sure to bring your A-game and don’t feel bad if you go home negative. One last little activity that Eva and I have been doing have been the LA World’s Affairs Council lectures. We saw the head of JPL speak about the Mars rover and then Vincente Fox speak about US-Mexican relations. It was really amazing. Eva thought Presidente Fox was a little unkempt. I guess that you do not need a perfect haircut to run a country. All in all, life is pretty good. Hopefully, getting better. I hope that all of you have been doing well. Thanks for all the comments and the gentle prodding. I will try to write more frequently. Your support continues to mean so much to me.

This is just an initial heads-up, the Hirshberg cancer run is coming up on October 26th. We are starting to get a team together and it would really be wonderful to see a few of you out there. We won the team competition last year, so expectations are high. We welcome all ringers. Start training now. Don’t worry, if you are like me and just hoping to survive the 5K, we will also have a group of walkers that should be formidable in their own right. My dad has created a team page so please join our team if you are going to do the run. I hope that the following link gets you there…

http://www.lacancerchallenge.com/faf/search/searchTeamPart.asp?ievent=264394&lis=1&kntae264394=4F6930097A084668B0CB30E9191211F5&team=3149367

If that does not work, go to www.lacancerchallenge.com, look to the right of the screen for “team rank” and click “more>>”. Then scroll down to Team Tyler and click again.

Again any support is appreciated and we had a pretty good time last year. Tell your friends, all are welcome.

Take Care and Live Strong,
Tyler