Happy Holidays

I made my annual trek down to New York yesterday to visit friends and family for Christmas. After three months of rest and relaxation in Boston, I am now embroiled in the stressfulness and chaos that is the holidays.

I'm trying to schedule followup appointments with my nephologist and cardiologist, but it seems that I won't be able to make progress on that until the new year.

So, I wanted to wish everyone a peaceful and fun holiday season! No matter whatever your beliefs may be, I think we all see the coming of winter and eventual lengthening of the days as a symbol of rebirth, and a chance to turn a new leaf in our lives. For me, I believe that I will overeat on Christmas again and pass out.

And I leave with a final word of wisdom: if you are going on a long trip by car, do not take water pills right before you leave. That is all.

3-Month Eval Recap (Followup)

Yawwwwn. I haven't had my morning coffee, so forgive me if I am not coherent.

I gave a ring to my doctor over at Boston Medical to find out the results of the labs that were unavailable on Wednesday. No melodrama here -- like we all guessed, everything appears to be looking good at this point. Free light-chains are about as normal as they could be, and the protein in my urine has dropped from 10.5 grams a month ago, to a little over 9 grams. Assuming that the January results were a fluke (which everyone now believes is the case), this is the lowest they've been since May 2005. Oh yeah.

Actually, I lied -- there is one surprise. Because of my good results, they have not scheduled me for a six-month evaluation. Instead, I will not be evaluated until the one-year mark in August. Of course, I will still need to check up with my nephrologist and hemotologist from time to time, but I may finally get a break from the non-stop visits to the hospital for a while. My health insurance company and I are both pleased.

3-Month Eval Recap

Well, my three-day-three-month-evaluation is over and done with. My appointments were held at brand spankin' new Moakley Center, which opened about a month ago. They are still working on some of the small details (such as getting furniture and pictures for the walls), but they are fully operational at this point. The new place is much larger, cleaner and more technologically advanced, but lacks the personality that the old clinic possessed. The doctors and staff like it; I guess that eventually I will learn to like it too!

As I predicted the other day, there were no surprises with this evaluation. Although all of my lab results won't be available until Friday, the results that have come in show nothing but good news. My blood chemistry has nearly recovered from the treatment, and to be honest, the numbers are actually better than they were before my treatment in August. I was told that my rate of recovery from treatment is above average for patients undergoing this treatment -- much less someone who has gone through it twice.

As well as I am doing, I am not off the drugs -- yet. My cholesterol and trigylceride levels have improved somewhat, moving from "ohmygod I can't count that high" to "very elevated". So I am back on the lipid medications (Niaspan and Tricor). And I eventually had to take some water pills yesterday morning, after three days of abstinence. I don't know where I am going to end up on my diuretics, as it has been a moving target lately. But I know that it is going down, baby.

Fighting Edema With Video Games

At 34, I'm getting a little too old for video games. However, when I purchased a big-screen HDTV to "comfort" me during my recovery this summer, I felt that the temptation of getting an XBox 360 was just too much. When you are stuck on a couch for several hours a day, I figured that playing games could be a nice diversion from watching Judge Judy and the nightly news.

Of course, I've learned that things never turn out exactly how you plan them to be, and for most of my recovery I was too tired for anything. It was hard to focus on watching TV, much less kill zombies or save the world on my XBox. Sadly, my new game system was collecting dust.

As I started to feel better, I began to feel bad that I spent $300 on a console that I never play. So, I decided to not squander my investment and start playing some games. The other week I decided to buy Gears of War, one of the newer games that has become extremely popular for this system. It's got a nice concept -- you are a solider fighting aliens who have invaded your home planet, and can kill them with a variety of different types of weaponry. My favorite is a machine gun that has a chainsaw built into its end. But I digress.

I have come to really, really like this game, and have been spending a lot of time playing online in multiplayer games. It's a very stressful game, with guns and bombs blasting everywhere, and of course, there's the worry that someone will sneak up behind you and take their chainsaw-gun and cut you in two. As you can see, it's great stuff.

I've noticed my adrenaline rushes through my body, and my blood pressure goes through the roof when I play the game. Since I naturally have low blood pressure, this boost really gets the juices flowing. I think that the increase in blood pressure is preventing the collection of fluid in my legs, thereby reducing my edema. So, I guess would could say that in my case, video game playing is therapeutic.

Before you dismiss my claims that alien bashing is clinicially helpful, here's some food for thought -- I've played Gears of War for an hour or so a day for the last few days, and I haven't taken any water pills since Friday. Stick that one in your pipe (or chainsaw-tipped machine gun, if you prefer).

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Monday begins the first of three days at BUSM for my three-month evaluation. The three-month eval isn't really meaningful, since it is too early to draw any conclusions from tests this early in the recovery. I expect nothing more than blood tests and some face time with doctors as a result of tomorrow's visit, but I'll post any significant news if it comes in.

Forbes Article

Beth at Amy Lloyd beat me to it in posting about the article on Forbes.com about our friend Robert Jordan. Jordan, who I wrote about in March, is a popular fantasy fiction writer who was diagnosed with the disease earlier this year. He has a very dedicated fanbase, and through his website he has also shared his experiences with his treatment and recovery at Mayo Clinic.

First the House episode, then the medical segment, and now an article in a popular business magazine. This has been a great year for getting the message about amyloidosis into the mainstream consciousness.

Hundred Days

Well, actually one-hundred and one, but I had totally forgotten about writing yesterday when the big day hit. While the first hundred days may have some significance for new presidents or NFL coach tenures, I don't believe that there is much significance for someone recovering from high-dose chemotherapy. It's just another day for me.

I'm pretty much good to go, and capable of getting back to regular routine, as long as it isn't too strenuous. I think the big test for me is getting back to work, which I hope will happen sometime this month. Once I am thrown back into the 9-to-5 grind, my body will need to adjust to all of the extra activity, hopefully leading to more stamina. It's only been a little over three months, but physically I am where I was in February or March, or about the six-month mark after my first transplant. That's a big difference.

Good news about the hair -- my follicles have decided to finally wake up and show for the party. Although the sides are still a little barren, I have to use hair shampoo. The patch on the top of my head is starting to grow out of control, so I truly fear for my future.

The progress on my edema has finally come to a halt, and while I've been able to manage it much better, I am sad that there hasn't been any significant improvement over the last month. As long as I watch the sodium, the edema in my legs are only about a pound or two, but if I have a salty meal I will still swell up like the Pillsbury Doughboy. Sigh. It seems that my plan to ween myself off of the water pills completely will have to wait a little longer.