My First Flu

Since my transplant, I've been very lucky that I haven't gotten sick... not even once. Not even so much as a cold. But the last few days of cold, wet, miserable weather have been trying very hard to end that streak. I've have the chills and a funny throat since Monday, and no matter how many vitamins I take or prayers I say, it doesn't seem to be going away. Nobody wants to get sick, but part of me would like to see how my body would handle it. Obviously I've got some ways to go in that department, as I would have usually nipped this thing in the bud.

I haven't made any announcements about Team Tony in the last week or so since we broke the Top 2000 teams. Since then, our team has been like the spaceprobe Voyager, continuing to progress and explore long after the initial mission was accomplished.

Now that we are in the big leagues, our progress has slowed down somewhat. We are currently hanging around 1300th place, but slowly moving towards the top 1000 teams (now that will be an accomplishment).

I have to apologize -- Historically, I've generated a large percentage of points for the team, but in the last week I've had some computer problems, which put some of my machines offline. As a result, our output has slowed down a bit. My bad. I hope to be back to my old output soon.

So, here's another recruitment drive for the Amyloidosis Awareness team. Tell your family, your friends, your pets -- and get them on the bus! There are currently 32 members, and there's plenty of room for more! When you run Folding@Home, your efforts are not wasted. And once you starting cranking out the units, here's some secrets to improving your score.

After The Shockwave

It's been a few days since I got the news on Friday, and I am still somewhat in shock. I have been the recipient of such dire news over the last eight months that I really didn't know how to process such amazing news. The gift of getting a "second chance" is so large and precious, that it is difficult to digest it in such a small timespan.

I know that I will be able to resume my normal life, but it will be a slow process. I am now nearing seven months post-transplant, and my body is still suffering side effects from the melphalan. It may take several more months to get back to the condition that I was in before all of this happened.

The weekend consisted of an long orgy of food and drink. I won't go into detail, as I don't know if my nutritionist reads this blog. I'm afraid that if I went into detail about the blatant violations that I performed, there would surely be hell to pay at my next cardiologist's appointment!

Thank you to everyone for all of your e-mails and phone calls, and I apologize if I haven't gotten back to you. The battery on my cell phone has been perpetually dead from all of the phone calls, and I have been too busy getting drunk celebrating to write back.

I do want to make a clarification and give further explanation about my test results, and what it means for me. As any doctor will stauntly proclaim, there is no cure for amyloidosis. The treatments available slow or stop the amyloid from spreading through the body and causing further organ damage. Just like cancer, a remission can be followed by a relapse in later life. Most patients who get a complete remission get blood tests every year to make sure that the little buggers are held at bay. Because the treatments and research for this disease are so new, doctors cannot predict if a relapse will occur, nor can they recommend tips for preventing a relapse (because they don't know what causes it!)

But any remission from this disease gives the patient a most special gift -- time. Every year, newer and more effective techniques and treatments are created and run in clinical trials. Every year you keep an amyloidosis patient from organ failure will improve his or her chances for survival for the future. Thanks to the hard work of doctors and researchers around the world, and the donations from the people that support them, this disease can become a little more manageable.

Test Results

This is the moment I have been anticipating (and dreading) for the last six months. This afternoon I spoke with Dr. Rosenzsweig over at Boston Medical Center to get my test results. I had prepared myself for the worst of circumstances due to some of the blood tests, but I was hardly ready for what he had to say.

According to my test results, I have succeeded in holding back the disease! There no more signs of amyloid in my system. I have achieved what they call a 'durable response'. Specifically:

• My bone-marrow biopsy was normal, with no abnormalities.
• My serum immunofixation tests were normal.
• My lambda free-light chains are normal (although a tad high) at 26.2.
• The amount of protein my kidneys are leaking has been reduced from 13.8 grams to 4.3 grams.

I am still in shock.

Where do we go from here? Well, my body is still damaged, and recovering from the treatment. I am still leaking a ton of protein, and my triglycerides are still very high. I need to continue doing what I have been doing, watching my diet, doing light exercise, and checking in with the doctors. I will go back to BUSM in June for another set of tests, and if things continue to look good, I will get the coveted status of "complete response".

I want to thank everyone who has helped me and given me support throughout the last six months... I grew from your strength and couldn't have done it without you.

Wow. I am still in shock. I am speechless.

Calm

One of the things that has surprised me is how calm and unanxious the wait has been. I am supposed to contact a doctor over at BUSM tomorrow afternoon to get results from my blood tests and bone marrow biopsy. This is truly a major milestone for me with this disease, as it will dictate what my plans are for the next 6-12 months.

To be honest, I am hoping for the best, but preparing for the worst. As I mentioned before, the odds of me getting a remission on the first try would essentially be a coin flip. It's too early to delve into how I would feel knowing that I would have to do this all over again from scratch. I'm sure that I'll have plenty of time to reflect over the weekend.

In other news - I'm having some problems with the edema again, but this time it is result of a lifestyle change. You see, I've been working full-time again for a couple of weeks now, and most of the time it requires me to sit in front of the computer. In addition, I am wearing support stockings (think of them as knee-high tights) to prevent fluid from getting into my lower legs. The combination of sitting and the support stockings causes the fluid to get stuck in my upper legs, which is now starting to get uncomfortable. I don't know how to deal with this issue, but I am trying a number of different things in hopes that will help. I tell my kidneys they can start healing any day now!

I've had enough suffering in the last 9 months to last a lifetime. Please, please, give me some good news.

6-Month Eval: Part III

Compared to yesterday, today was a slow day over at BUSM. I started off with an echocardiogram, then shuffled off for some lunch. While waiting for a consult with one of the amyloid doctors, my stepmother and I attended a small amyloidosis support group meeting, in which we met (and re-met) some of the other patients.

One of the benefits of having a rare disease is that the doctors and nurses don't see the volume of patients, and tend to remember you. It's nice to have all of the nurses greet you by name, even though you haven't seen them for months.

I really don't know what the purpose of the doctor consult was this afternoon, as most of the major tests (such as the light-chain and bone marrow biopsy) have not come in yet. I only found out the following:

• My kidneys may not be getting better, but they are not getting worse.
• My heart is (still) not affected by the amyloid.
• My triglyceride count is now under 1,000, but there is still work to be done. There is also a good chance it may disrupt the light-chain tests again.

We won't hear about the final results of the tests until Friday. Although the test results we have now are still inconclusive, they are preparing me for the possibility of a second stem-cell transplant. I really can't comment and reflect until I get the results on Friday. And then we will take it from there.

Bone Marrow Biopsy

I've been getting e-mails asking to describe the bone marrow biopsy I had this afternoon, so I thought that I would elaborate now that I am out of my drug-induced stupor.

The bone-marrow biopsy is the most useful test for determining presence of amyloid in a person. By obtaining a sample of the bone marrow, doctors can accurately ascertain whether a person has amyloidosis, as well as how far it has progressed in the marrow. It is performed at your first pre-admittance evaluation, then performed at your six-month evaluation. The biopsy at the six-month evaluation is the first real indicator used by doctors to determine whether a person is in "complete remission". I may be able to tell you this information about me as early as tomorrow.

Although the procedure is quite invasive, it is rather routine, and can be causally performed in a doctor's office. Usually there are two medical staff in the procedure, one typically in a learning capacity. Before the procedure you can take a relaxation drug (Ativan is my tonic of choice), which will make things go smoother.

You pull down your pants a bit to reveal the rear of your pelvis, and lay down facing away from the doctors in the fetal position. This is actually quite convenient, as after the procedure is done you probably will want to be wrapped up in a ball.

The doctor then gives you a local anesthetic, which helps when they shove the big needle through your skin and muscle. Note that this shot doesn't numb any feeling when the needle breaks into your bone, so I feel that this shot is given out of pity.

Once the doctor "numbs" you up, he non-chalantly pushes the needle to your bone (to find it). You relax a bit, as this part doesn't hurt too bad. I try to think happy thoughts. Lots of light, fluffy happy thoughts and all is peaceful. Exhale....

Then the doctor jams the needle into the center of your bone. I can't relay the pain that is caused from this action, but I would probably compare it to how it would feel to cut your arm off with a bottle of alcohol and a hacksaw. It is a deep, very sharp pain that sends quivers of pain down your legs. I can imagine that a person could pass out if they went through a number of repeated attempts.

But wait, there's more. Once the needle is in fully, and you are swearing at a top of your lungs, he removes the top of the needle, jiggles the needle that is stuck in your bone to extract marrow from the bone. It is an amazing experience, mostly because that just when you didn't think the pain could get any worse, it does. While this is happening, the staff have a causal chat with each other if they are in a good place and are ready to extract a sample. And you are like, "TAKE THE G*DDAMN F***ING THING OUT OF ME YOU M*****F**KER!!!" After a minute of this, while grimacing in pain and trying not to pass out, they will decide to do the extraction of the needle to determine whether they were able to get a good sample. And then the needle is out, and silence as they examine the sample to see if it is good. And you are praying to whatever God you believe in hoping that they got what they needed and they don't have to do it again.

Usually they will say "well we got a small sample, but to be safe we're going to go in one more time just to be sure. Is this ok with you?"

It is important to note that should you be in this situation, I do not advocate aggressive violence against the doctor performing the procedure. Instead, I recommend that you laugh nervously and resume the fetal position. You'll be wrapped up there for a while.

---

It was not bad today. They got what they wanted after 2 attempts, which is average. They place a bandage over the wound, and send you on your way. I am on Tylenol to deal with the pain, which is moderate, and expect the wound to be healed in a day or two.

6-Month Eval: Part II

The first day is over and done with. The good news is that all of the major tests are over with. No news on the results of the blood tests; we will find out more tomorrow.

I had the bone marrow biopsy today, and let me say that they really, really suck. I don't think that there's any way to spin the experience of having a large needle jammed into the back of your pelvis as being pleasurable. This time only required 2 attempts, and they were able to get a good sample, so all of this pain I'm in right now was worth it.

I need to get some Tylenol, so I'll write more in a bit.

6-Month Eval: Part I

Well, the day has finally arrived. I'm here in the waiting room at the hospital on this fine snowy day. Luckily we made it here fine, and didn't need to bring out the sled dogs.

My bone marrow biopsy has been scheduled for 3:30 this afternoon, along with the standard blood tests and chest X-rays. I'm anxious but eager to get this over with. Wish me luck. I'll give a full report later today.

One Thousand

Today our team crunched our 1,000th work unit. That's roughly equivalent to about 12 weeks of processing on a supercomputer. We are now in the top 1,500 teams and continuing our skyward path.

Counting The Days

The day that I've been hoping for (and dreading) is just around the corner. On Monday I will head off to the Boston Medical Center for my six-month evaluation. The evaluation is scheduled over the course of three days. To be honest, I am equally scared and hopeful for the test results. They truly could come back either way.

I'm not sure what is scheduled for the six-month evaluation. At the very least, it consists of a wide range of blood and urine tests, as well as the wonderful bone-marrow biopsy. I really look forward having an eight inch needle inserted into the center of my hip bone.

So what's working for me? My body feels pretty good. I no longer suffer any major fatigue. I feel more energetic now than I did in May. My hair is on it's way back (although it's still a little weird). The color is back in my face. My appetite is nearly back to normal.

What's not working for me? I still have substantial edema throughout my body, especially in my lower legs during the evenings. I haven't noticed any improvement, although I have gotten much better in managing it. The nephrotic syndrome is artificially raising my tricylerides and cholesterol levels to very high levels. As a result, I am on a low-sodium, low-glycemic diet. I cannot drink. I am still 25 pounds underweight, and I have been unsuccessful in gaining (and keeping) a pound of weight over the past three months.

There's a lot of concern about my condition, but it all could still be part of the healing process. That is why I have hope.

Scoring More Points

OK, you've joined Team Tony and installed the client. You're folding work units and moving up the charts. But now maybe you're tired of people passing you in the rankings. Hey, it's no fun being in the slow lane!

There's a new article on TeamTonyWiki discussing the methods to make your folding production even better! For example, if you are running it at home, have you considered running it on your machine at work? Although we now consist of 65 machines, and are now quickly approaching the top 1500 teams, we can always use the extra juice. And if you aren't part of the team, why not join today?

Bringing Out The Big Guns

Sorry about the long delay between posts, but it's been a busy weekend. Not where did I leave off in the story? Oh, that's right... I was still having some issues with the edema. Although I hadn't inflated like a Goodyear balloon, it was increasing at a troubling rate.

On Thursday I took my regular dose of Lasix @ 100mg. It was totally ineffective! By Thursday night, I had still continued to gain fluid in my upper legs. It was a little scary because it was starting to affect my walking, which I haven't had problems with in quite a few months.

On Friday I decided to kick it up a notch and go to my 'maintenance dose', which in my case is Lasix @ 120mg. Usually when I take this elevated amount, it starts doing some good. It is a little unnerving to go this high, but it seemed to be the only way to get this under control. I was apprehensive, but confident. Edema, please go away!

But again, nothing happened. It hadn't reduced the edema at all; it had only kept the edema from advancing any further. Now, this was starting to tick me off.

So here I am on Saturday, and I've raised my dosage twice without any success. I am a little panicked at this point because a) I don't have any control of it and b) maybe my kidneys are getting worse? While in the midst of an anxiety attack, I decided that there was only one way that I could get a rein on my fatty legs. Send in the Zaroxolyn!

Astute readers will remember my tales with this drug a few months ago. This was the drug that had removed the thirty or so pounds of fluid that I had amassed while undergoing treatment. It was a little too strong, as after a while it had started to make me sick. I was a little hesistant to unleash this beast in my system, because it is really good at what it does. To compare: if Lasix was a shopping-mall security guard, then Zaroxolyn would be a Green Beret.

So I searched for my old bag of medication... the one I've named, "Drugs I Hope I Never Have To Take Again". I blew off the dust, and pulled out the nearly-empty bottle of Zaroxolyn.

On Saturday, I took the Zaroxolyn followed by the chaser of 80mg Lasix. If this doesn't work, then nothing will. I scratched plans for the evening knowing that I'd be making frequent restroom breaks.

An hour passes, and I don't feel a thing. Two hours... three hours. Nothing. What is going on here? I've taken the strongest stuff in the house, and my kidneys aren't making as much as a peep.

Then, it happened. The Zaroxolyn started to kick in and start working. I had to keep on going. And going. All through the night and the following morning. By Saturday night I was five pounds lighter than when I started. That my friends, is the power of Zaroxolyn.

I decided to take a break on my water pills for Sunday. My plans are to get back on my original dose of Lasix @ 100mg, and hope to keep the fluid down. My six-month evaluation is in a week, and I'd like to look good.

Comenzo Webcast

Over on Beth's blog I found an interesting link. It's a webcast that was created last year at a medical conference in Las Vegas.

The webcast is entitled "Amyloidosis: New insights and treatment including autologous stem cell transplant" by Dr. Raymond Comenzo. Dr. Comenzo is well renowned in the medical community for his vast experience and dedication to helping amyloidosis patients. Although I haven't personally met him, I've heard numerous stories of his talent in defeating this disease.

The webcast gives an overview of the disease, and discusses the latest techniques that are being used to combat this disease, including the stem cell transplant (SCT). If you are interested in learning more about amyloidosis but don't want to go through the rigors of reading a 500-page medical journal, this may be your only free ticket.

---

Today I started resuming my old dose of 100mg of Lasix. Nothing to report so far, as it will probably take another day or two to discover whether or not I can deal with it.

...And Into The Fire

I've been on the reduced Lasix dose for three days, and it appears to have upped my blood pressure back to a semi-normal level. It's so great not to feel nauseous the entire day.

Unfortunately, the reduced Lasix dose has thrown my edema out of whack, as it is not big enough to manage the fluid that I leak into my body on a daily basis. Since Monday I've gained around 4 pounds of fluid. I'm not quite back to the stage where I'm hobbling around again, but if I don't do something, by next week, I will. I cannot relay how extremely frustrating this is for me.

Anyone who has had moderate to severe edema will tell you that the problem with having the edema is more than carrying the weight around. Swollen extremities can be painful, and are sensitive to the touch. It also throws off your circulation, so you are limited to sitting or laying in particular ways. Finally, it throws off your blood pressure, which sometimes can make you very moody. I know how it feels, and I am not going down the path again if I can help it.

So I'm doing something that I shouldn't be doing -- I'm getting back on the higher Lasix dose. There has to be a better way to manage all this medicine, and damn it, I am going to find it.

Out of The Frying Pan...

Last night I slightly reduced my water pill dosage in attempt to resolve the persistant nausea I had been feeling for the last few days. This strategy seemed to pay off, as today I felt much better. My heart rate is still high, but lower, and as long as I didn't make too many sudden movements, I was okay. There's still some room for improvement, but it's a start.

I still cannot eat too much in one sitting, as digestion lowers blood pressure and makes me a wee bit peaked.

I still don't know if the drop in my water pills will cause my edema to return; if it does I'll find out in a few days. I'm crossing my fingers.

Theory

My general malaise has disturbingly lingered throughout the entire day, which has made me very nervous, considering that I don't know what is happening to me. Add to that the stresses of going back to work and my upcoming six-month evaluation, and believe me... I really could use a drink. And I'm not talking about a can of Coors Light either.

So without an answer, I have been forced to use all of the knowledge and experiences that I've had in the last year to diagnose myself. I've been given a number of medicines, and one of them is making me ill. It reminds me of some sick, perverted medical version of the game Clue. Was it Dr. Ballady with the Niaspan in the lipid clinic? Or perhaps it was Dr. Dember with the Lasix in the Doctor's Building?

All I know is that everything was fine and dandy until I started taking the Niaspan. What makes this mystery difficult is that I had been taking it for a few days before I started to feel bad. And I have been tolerating the dosage every night without ill effect.

I fired up Google and did some research. Did you know that Google can be used as a dictionary? Enter in "define: <word>" as your search, where <word> is what you'd like a definition on. I checked out niacin, which is the ingredient in Niaspan. I found out that it is effective in reducing high blood pressure. The last time I felt this way was when I was taking the Zaroxlyn in September, and it was too strong, making me ill. Perhaps the Niaspan and Lasix are causing severe hypotension (that is, low blood pressure)? Perhaps I'm onto something.

If I cannot tolerate both of these medications, then I will need to cut or stop taking one of them. Because the reduction of the trigylcerides is a much more urgent matter, I will need to cut down on the water pills.

Today I went down from 100mg to 80mg. If this illness continues, I will skip it for a day or two to see if it resolves the issue. And we will have to take it from there.

Problems Continue

Since Saturday, I have been feeling a bit off. Although yesterday was a bit better, the mornings have still been horrible. This morning I woke up at 7:30 to go to my first full day of work, and I felt like I was going to die.

To explain how I feel, I first need to give some background. For as long as I remember, I have never been a morning person. My blood pressure runs pretty low, so when I wake up in the morning it is very difficult to get the juices flowing. If I move too quick or exert myself too much in the morning, I will get dry heaves and feel sick. As the day progresses, my blood pressure rises a bit and I can cope with this feeling. By afternoon I'm in control, and the evenings are okay.

For the last few days, I've had a slightly elevated heart rate which does not go down when I relax or rest. As a result, it has amplified my bad mornings to the level which I am basically immobile for the first hour or so. It has also lingered into mid-day, which is reducing my ability to be productive.

I spoke with the lipid nurse over at BUMC, and she doesn't believe it to be a side effect of the new medication I'm taking.

What's strange is that my temperature and other vitals are relatively normal. Despite this issue, there seems to be nothing else wrong with me. I do not have a cold or feel sick.

We'll see what tomorrow brings. I see the doctors for my six-month evaluation in two weeks.

Six-Month Anniversary

It has now been six months since I received my stem-cell transplant in June. Most of the effects of the chemo have now subsided, and only now is my body beginning to rebuild and repair myself.

It is ironic that while I am passing this health milestone, I am not feeling well at all. For the last 24 hours my body has been 'off'. It's hard to explain, but I may be having either some circulation problems or side effects from the Niaspan I started taking on Wednesday. I don't have a fever... actually for the most part I feel fine. However, I do have a slightly elevated heart rate, and a little tightness in the chest. I also tend to keep my stress in my chest as well, so it's very hard to diagnose. I'll be contacting the doctor's office tomorrow to see if it might be the medicine.

We've Done It

Take out the cigars and bring out the champagne. Last night, Team Tony officially broke into the top 2000 teams. We're in the big leagues now. Congratulations to everyone who has been a part of this effort.

To give a frame of reference: Although the team has been active for less than two months, we have ascended to the ranks of the elite -- some which have been in the project for 4-5 years. That is the power of the Amyloidosis Awareness team.

When I created the team on November 11th, I didn't think that it would account to much. I mean... what contributions can one person make? Regardless, I thought that it was important to work on something that may make a difference in the future for people with amyloidosis and other amyloid diseases. I wish that I could jump into a laboratory and find a cure for this thing. But I can't, because I wouldn't know where to start. So instead, I fold for the team.

So, now that we've made this lofty goal, what's next for Team Tony? Well... now we set our sights for the Top 1000 teams, of course! From here, it will start to be an uphill battle, so the recruiting must continue. Please direct your friends, family, neighbors and co-workers to the new TeamTonyWiki and get 'em on board. Let's keep this train moving!

Another Approach on The Triglyercides

Ever since I got the news a week ago that I had been unsuccessful in getting down my triglycerides before my treatment, I had been a little depressed and a little angry. I would have much rather preferred reducing these levels by medicine than by having them manually suck it out of me (which, coincidentally, does suck).

I spoke with the 'lipid nurse' over at BUSM the other day regarding this problem, and now that my cardiologist is back from vacation, he was able to look at my case. Mental Note: Never get sick on or around a holiday. God forbid you need to get in touch with someone.

Anyway, I learned a couple of things. First, that my abnormally high readings most likely have been caused by my Christmas eating spree, which consisted of mostly sugars and pastas. This diet would push anyone's trigylceride levels through the roof, and secondly, that there was still hope in bringing it down. Second, that there is still a chance I may be able to get it down in time.

I am now on 500 mg of Niaspan in addition to the 145mg of Tricor. I am also to modify my diet to avoid sugary snacks, pastas, juices to keep my glycemic index contained. And it wouldn't hurt me to get off of my duff and get some exercise.

So for those keeping score, I'm now on a low-sodium, diabetic diet, and I still can't drink alcohol. That means that my meal options are now thinner that I am.

Day + 180, Back in Boston

I'm just came in from New York, and boy are my arms tired. (rimshot)

Seriously, the last week or so has been a busy, yet comfortable. Time to enter the real world again, and leave all of the Christmas cookies and snacks behind.

There's been a change in my medication -- I'll relay the story tomorrow when I'm not so exhausted. Good night!

p.s. Team Tony is about 5,000 points away from breaking into the top 2,000 teams. At our current rate we'll be there before the weekend.

Day + 178, State of The Tony

Over the last six months since I began this blog, I have crossed paths with many kind souls, and have made new friends -- many who are traveling on the same path. It is both comforting and sad to meet other people who have or know someone who has this disease. It does not discriminate. I've been in contact with other patients both young and old, of many different races, from many different countries.

Over the last few weeks, you've probably noticed that my posts are no longer as regular as they were in the past. It was one of my intentions when I started this blog to keep a daily journal of my health and general well-being. And indeed, the summer was filled with lots of wild changes in my health, and boy did I bore you with my 'my feet are so fat' posts. Thank you for bearing with me. :)

Now that I'm approaching the six-month mark after my stem-cell transplant, I still have problems, but in general, things have stabilized. No more wild swings in how I feel, or what I weigh. As a result, when it comes to my health, there's less new things to discuss.

With my prognosis uncertain, who knows? Perhaps things may get, um, interesting again. We will know more in three weeks when I go to my evaluation. In the mean time, I'll be reporting on other news regarding this disease -- new treatments, new patients and survivor stories. Because of the dearth of good information out there on the Web, I'd like to remain an active voice to the latest news about this dreadful condition.

So, how are you?

Over the last few days, I've received a number of e-mails inquiring about my health and other stuff. So, to answer all of your questions...

I'm glad to say that most of the side effects due to the chemo have subsided. Every health problem that I am experiencing today is related either directly or indirectly with the kidney damage caused by the amyloid. On any given day I carry between 4-5 pounds of fluid on me. Although I haven't seen any definitive improvement with my kidneys, I have been able to manage the edema better. It's no longer a physical hindrance -- merely a nuisance. In the morning, it's now hard to see any swelling at all. That all changes as the day passes, but it doesn't affect my mobility like it used to. I can't believe that four months ago my legs and feet were so bloated that I couldn't even dress myself.

The trigylceride and cholesterol issue that I'm experiencing is also related to the nephrotic syndrome due to the amount of protein released by my kidneys. I hope to speak with my cardiologist this week to find out if they will put me on another drug. I will also notify my amyloid doctors that I was unsuccessful in getting it down. It is likely that they will have to suck it out of me as they did in June.

During the chemo, I lost about 20 or so pounds of real weight. Since then, I've gained about 4 or 5 pounds back. The weight gain is slow due to my fast metabolism, and all that protein leaking! Hopefully that will improve in the months to come.

Hair continues to grow in. It has grown long enough to brush! However, the new hair is very fine -- like a baby -- so it's been very unmanageable. It feels kind of weird, and every time I meet someone the first thing they want to do is rub my head. Sometimes I feel like a Chia Pet.

The disability insurance. Ugh. Thanks to everyone for your suggestions and comments. I will be receiving an official denial notice in the mail. It's going to be tough, as they claim that since I saw a doctor two weeks before my coverage started in May regarding the edema, it was a related symptom, and therefore a pre-existing condition. I will wait to review their letter before taking appropriate action.

I still am not working, but I've told my company, Exenet, that I will be returning back to work next week! They have been so good, and so patient with my recovery. I'm excited and a little nervous about getting back into the rat race again, especially since I've been out of it for so long.

So, that's a wrap! Time for a nap.

TeamTonyWiki

I'd like to formally announce the opening of TeamTonyWiki, a website dedicated to our Folding@Home Amyloidosis Awareness team. It can be found at the following address:

http://fazzone.com/amyloid/teamtony

As the name suggests, I created the site as a wiki, which allows the public to add and update pages on the website. I've done this to allow some of our team members to add their own tips and tricks to the site.

Right now, the site is a little barren, but I will be constantly adding material over the next few weeks. Enjoy.

Less than a week to go...

We now have 25 members on our team, and over 50 machines have folded units. We are generating points at a rapid pace. According to FAHStats, we will break into the coveted 'Top 2000 Teams' before the end of the week. Woohoo! We rock!

Happy New Year

Well, I for one am glad that 2005 is behind us. That year really sucked.

I want to wish all of my gentle readers a safe and healthy and prosperous new year. To those who sent me holiday cards, thank you!