Day + 145, The Main Event

I received my six-month evaluation confirmation from Boston Medical the other day. I'll be going back on the week of January 23rd for the evaluation.

This is the biggie. One of the benefits of the six-month evaluation is that the doctors perform a bone-marrow biopsy. It's an uncomfortable procedure, but worth it. By going into the bone marrow, you've able to check first-hand the presence of amyloid. No more guessing on blood tests or x-rays. You are finally able to find out whether or not all of the suffering was worth it.

Typically, you get a preliminary blood test at the three-month mark which gives you an idea of how things are going. However, my trigylceride levels were so high that they threw off the results. So I'm in the dark, which makes me a little nervous. I think the worst part is not knowing. Until I find out what the results and prognosis are, I really can't starting rebuilding my life in jest. Of all the pain and inconvenience these last months have given, that is really the hardest part.

Day + 143, Lasix Adjustment #125

Ever have your weight taken on one of those scales in the doctor's office. You know, the one you stand on, then adjust the weights so the pointer balances itself in midair? No matter how much you move that damn slider back and forth, you can never seem to get the point to go to the middle and stand still.

Well, managing my edema with the Lasix medications has been a similar experience. There is no such thing as a 'perfect' dosage. Too little, and you fall behind, slowly gaining fluid. Too much, and you get sick.

I've estimated that currently I carry between 6-8 pounds of fluid on me during the course of the day. At this amount, it fills up the legs, but the skin underneath is still loose somewhat. My goal is to get as much out as possible, so yesterday I performed another 'course correction' by upping the Lasix from 100mg to 120mg a day. Whenever you increase the medication, that first night it is very powerful. I've lost 3 pounds since yesterday, but now I'm what done what I call 'scraping the bottom'.

My body 'scrapes the bottom' when I get to around 5 pounds of fluid or below. At this level, the water pills start to have difficulty pulling the remaining fluid (which are in my lower legs). As a result, it starts to pull from the rest of your body. This causes a number of things to happen. First, you get extremely dehydated. My mouth becomes as dry as a desert. Secondly, a lot of electrolytes get eliminated from your body, causing headaches and general maliase. You feel miserable, and get very moody. You can recharge your electrolytes by drinking some Gatorade.

It's not a good feeling, so I tend to back off and reduce the dosage. The result -- I remain with five or more pounds of fluid in me at all times. But considering that I had nearly forty pounds of fluid right after the treatment... I'll deal with the five pounds.

Team Tony Breaks 10000 Point Mark

Today, the Folding@Home Amyloidosis Team, Team Tony, broke the 10,000 point mark. Considering that the team started on November 10th, we are outputting approximently 590 points a day. This is an awesome start.

At this rate, I expect us to break the top 6,000 teams this week, and perhaps the top 5,000 teams by the middle of December. My goal is to recruit enough people and machines to make the top 1000 list by this time next year. We can do it.

Day + 142, Hair

Let's talk about hair.

When I went in for treatment in June, one of the things that the doctors warned me about was that I probably would lose my hair due to the chemotherapy. l knew beforehand that chemotherapy causes you to lose hair, but what I didn't know was that some people don't. Chemotherapy always affects different people in different ways.

So I had to make a choice to buzz-cut it or not. Most patients, I was told, jump right in and shave it all off. However, I had a thick head of hair, so maybe I could stick it out?


But then I thought about it for a bit. What if I do lose all of my hair? It would probably come out in clumps, and I'd end up looking like one of those zombies from Dawn Of The Dead. That would be good. And besides, it was a hot summer, and being of the male gender, baldness was not something to be ashamed of. Hey, look what its done for Patrick Stewart.

So off it went. It was the easiest and quickest visit to the barber I've ever done. I decided that while I was it, I might as well shave off the goatee.


After I had the high-dose chemotherapy, there wasn't any lost of hair. Perhaps I got the buzz for nothing? I was a little angry. Actually, I was drugged, so I really didn't care about my hair. But if I hadn't been, I'm sure I would have been a bit peeved.

And then suddenly, masses of hair would show up on my pillow every morning. My shedding left a trail everywhere I slept or sat. It wasn't until nearly two months out that the hair loss stopped, and by that time I was nearly bald!


And then everything stopped. While I wasn't shedding anymore like a lapdog, I wasn't growing anything back. Fears ran through my head. What if something went wrong. Am I doomed to look like this for the rest of my life. Will I need to sign up for one of those hair-replacement clinics?

In late September, my body kicked in and my hair started to come back, very slowly. Today, it is definitely thicker and it is very obvious that it is coming back. My hair is now in it's "terrible twos" stage. It's starting to grow very quickly, wander in all directions, and generally difficult to manage.


I'm glad that I'm getting it back finally. Even more happy that it is not coming in a different color, or curly or fluorescent green. It's still a little too short for my comfort, but considering I won't be walking down any red carpets in the future, it's all good.

Lance Carter: When we last left our hero...

I've added Lance Carter's blog into the Patient's Blogs section. His blog, entitled "Lance Carter: When we last left our hero...", details his struggle with amyloidosis and multiple myeloma.

His wife, Lisa, has done a great job detailing how he discovered the disease, and her description of amyloidosis (and treatment) is very informative.

We are all rooting for you Lance! You have a rocky road ahead of you, but if you keep your head up high, you will defeat this. In preparation for your stem-cell transplant, I would offer you the advice I gave to Beth before she had her transplant about a month ago.

• Learn to accept that during your treatment, things may occur unpredictably and out of your control. Your gains, your setbacks -- none of these things will be on any schedule. If you're a control freak like me, this will be all very frustrating. Treatment and recovery is a long process. Clear your calendar, and let your body pace your recovery. Let go of your outside worries and focus on you and your health... it will make things go smoother.
• Never underestimate the power of a positive mental state in your recovery. It is more powerful than any drug or doctor could ever be.
• While you are in the hospital, seek and befriend other amyloid patients. Speaking with others in our condition is very enabling and will give you strength.
• Record all your experiences -- even the bad and horrible ones.
• The drug Ativan will be your friend. Use it often. Whenever you are feeling bad, take one and go to sleep. Repeat as necessary.
• Be sure to keep a paper journal. Record things such as what drugs you took and at what time. You need this because you will forget sometimes. Keep track of which doctors and specialists you saw. This is necessary to because you will see a lot of them, and when the bills come you'll want to remember on what days you saw which people. Record stuff such as weight and how you feel each day. This is necessary to remind yourself of the progress you are making with your recovery.
  
• Draw on your friends in your support network -- don't be shy to ask for help or favors when you are in need. They will want to help you, and you will need to be helped during this process.
• Learn to like hospital food. In the end, everything will taste like chicken.
  
• Never, ever give up. Fight the good fight.

Happy Thanksgiving

For some reason, my mouth has been dry as a desert today. Typically I'll get a little dehydrated in the evening, but not early in the day. Drinking eight glasses of water has not helped the matter, unfortunately.

--

Team Tony continues to move up in the rankings as the number of computers in our group grows. As of this point, we have 6,217 points and 43 work units. We are now in the middle of the pack. This is an amazing accomplishment considering the team is only 2 weeks old.

If you haven't joined our team and would like to do so, the link to the setup page is here. Remember to change your team number to 47429, or else your results will not be applied to the team. If you change the number while it is running, you will need to close and restart the program.

Remember - a work unit takes a long time for your computer to process... sometimes it may take a week or more for just one unit to finish. Please be patient!

--

I want to wish everyone a Happy Thanksgiving. (To my friends outside of the United States, well, um, enjoy another day at work :)

Since the procedure nearly five months ago, I have been really craving protein-rich foods, such as turkey. I don't know why this is, but perhaps it's because my kidneys leak out almost all the protein that I eat, causing me to be protein deficient. In any case, there's never a bad time for some turkey, stuffing, mashed potatoes and gravy, with a side of cranberry sauce, is there?

Now I've got myself hungry again. Time to raid the refrigerator for some low-sodium snacks.

Day + 137, Steady As She Goes

Another cold rainy day here in Boston. I guess as long as it isn't turning to snow, I can't complain. Before you know it, the parking lots will be filled with feet of snow.

Today was a followup appointment with Dr. Dember at Boston Medical. This was my first visit to her in capacity as my nephrologist. I'm happy to have her, as she was on my original amyloid team, is familar with the disease, and knows my history.

As expected, there were no surprises. I've gotten better at managing the edema, and there really isn't much more that I can do. As a result, there was no change in my prescriptions. I was hoping that she'd come up with a new drug that would make it all go away, but that was not in the cards today.

It's quite possible that eventually it will improve on its own, but for now I need to shift my focus from reducing the edema to learning to live with it. This is a very long term issue (perhaps for the rest of my life), so I need to just deal with it.

Go Team Tony!

They say that every great adventure starts with a single step. Our team stepped up in the standings, producing 12 work units. As you know, Team Tony is our Folding@Home team. Since my announcement about the Folding@Home project the other day, we've had great success getting recruits to help find a cure.

Our goal is to make it into the top 1000 teams sometime next year. In one week, we've jumped from 41163th to 8165th place! That's almost in the top 20%.

If you're the type to leave your computer on overnight, we'd love to have you in our fight against amyloidosis and other protein folding diseases. Please see my project link for more information.

Back In Town

After a couple days of uneven rest, I have returned from the homeland. After three hours of driving I am exhausted, although not nearly as bad as I was when arrived on Monday.

It was a good move to stay away for a few days. Things have calmed down a bit since I left, and there's no longer the risk of contracting strep throat. It will be nice to relax and take a break from my previous nomadic existence.

Day + 130, Back To New York

A short while after making my post yesterday, I was filled with a sense of worry that if I went back to the apartment while the family was still sick, that I bad things might happen. Call it a "sixth sense" if you will, but was filled with a sense of dread as I packed my stuff to return yesterday morning.

I followed my intuitions to "get away". I filled up the gas tank and drove back to my aunt's house in Upstate New York. Three hours later, I was back to spot I had been just seven weeks ago. I've got no idea how long I'll be staying here, although I'll wait for the dust to clear back in Boston before I head back.

I made it... exhausted, but in one piece. Question of the day: What is it about driving long distances that tire you out? Whatever it is, I'm sure it's the same mechanism that makes you sleepy riding in an airplane. You're not moving. You're not running a marathon? So, after you have made it to your destination, why are you so damn tired?

I expect to do some 'recovery' naps today, but I expect to be myself to be myself by tomorrow.

Day + 129, Evacuation

Apologies for the gap in updates.... it's been a rather busy weekend. My stepmother, Janice, who I am currently living with through this transition, was told she had strep throat yesterday. Since she suspects she's had it for the last few days, and I've been around her, this would have put me at risk as strep throat is highly contagious. Being that my immune system is only 4 months old would make this doubly so.

For the last few days I've been out of apartment just to be safe, visiting friends, sleeping on couches, and generally living a nomadic existance. I've been staying at her son's house for the last two days (Thanks Greg!) while her medication has kicked in. I plan on coming back later today.

In other news, I've changed my Lasix prescription (again) up from 80mg to 100mg. 80mg was keeping me level, but at night I still could feel it in my ankles and knees. So I'm turning it up a notch. Since my previous dose at 120mg was a little too strong, I'm hoping that 100mg will put me at just the right level (for now).

Folding At Home

Would you like to help find a cure for amyloidosis, cancer and other diseases? With your computer, you now can, and it's extremely easy to do. All you need is Folding At Home.

WHAT IS FOLDING AT HOME?

Folding At Home is a distributed computing project run by Stanford University. They make software which uses a computer's spare processor cycles to simulate protein folding. The protein folding process is a source of many diseases, including amyloidosis. By simulating this process, scientists will be able to make drugs to fight these diseases.

There are many thousands of people who use Folding At Home. With the software, all of the computers become a 'supercomputer' which performs the calculations needed to simulate protein folding. With all this computing power, calculations which might take years to perform in a lab can be done in days.

WHAT DO I NEED TO DO?

In order to run Folding At Home, you need to download the software off of the Folding At Home website. Run the SETUP program, enter in your name and our 'team number', and you are finished.

WILL IT HARM OR SLOW DOWN MY COMPUTER?

Folding At Home contains no spyware or adware! It sits in your system tray and quietly performs all of its work in the background. It is programmed to run at a low prority, meaning that you should not be able to tell that it is running. Of course, you can configure the program any way you want. You can even make it your screensaver!

HOW DO I INSTALL?

1) Download the program from this page.

• If you have Windows XP or Windows 2000, download this file.
• If you have an older version of Windows, download this file.
• If you have a Macintosh, download this file for the graphical client, or go to the download page to get the screensaver.

2) Run the program. Follow the instructions on the screen. It will ask you for two important pieces of information:

• First, it will ask you for your username. This can be anything you want, as long as there are no spaces in the name. For example, mine is Tony_Fazzone.
• Next, it will ask you for a team number. The amyloidosis team number is 47429.
  
• NOTE: You will not officially join the team until you've processed at least one work unit. As soon as you process a work unit, your name (and results) will show up on the Team Tony statistics page.

That's all there is to it!

Of course, once you've finished, you can configure the program by right-clicking the Folding At Home icon in your system tray. The icon looks like a red gear. From here, you can change how fast you want to program to run, or if you want to use it as a screensaver.

Want to learn more? Check out the team's website, located at http://fazzone.com/amyloid/teamtony.

PLEASE HELP

I hope you decide to run Folding At Home. Every computer that runs it will increase the odds of finding cures for these deadly diseases. If you have any questions, please don't hesistate to contact me, and I will try to help you out in any way I can.

Lab Results

I heard back from the 'lipid nurse' yesterday. No real surprises -- my triglycerides are not insanely high, just very high. Same for cholesterol. My LDL (bad cholesterol) count is 76, which is very good.

They set me up for an appointment at one of their 'lipid clinics' (no, I'm not making this up) in December. That's well and good, I told the nurse that my doctor wants to get my triglyercide count quickly so that it will be ready for my six-month evaluation in January. She said she'd get back to me. Still waiting.

Day + 125, Drug Dependence

In a couple of hours I call the 'lipid nurse' to get the results of my cholesterol and tryglyceride labs. I expect them to still be very high, but nowhere near the crazy numbers that I got during my three-month evaluation. As a bonus gift, I'll be getting my LDL (bad cholesterol) count, which would indicate if I'm eating too much at Kelly's Roast Beef.

Before I started my treatment, I was introduced to lorazepam, or what is popularly known as Ativan. It's a handy anti-anxiety drug that's helpful in a number of situations, including insomnia, pre-surgery relaxation, and when experiencing chemotherapy-induced nausea. Needless to say, it is the 'Swiss Army knife' of any amyloidosis patient's drug collection.

Originally, I would take it at night to put me to sleep (less traumatizing than the tranquilizer dart). Then when I started treatment I would take it whenever I wanted to sleep, or was stressed out. Then eventually, I would take it any old time that I wanted to relax. Slowly, I found myself becoming the addict.

The doctors say that Ativan is a physically addicting drug, and that it should only be taken as necessary. I think that I was being a little too liberal when I started using them as after-dinner mints.

Well, since then, my body has adjusted to it, and I've had to raise the dosage. I've been looking in my little pill bag, and I've noticed that I am quickly running out of my stash. Perhaps this would be a good time to wean myself off.

Problem is, I'm chemically dependent on it now. If I don't take it at night, I get insomnia and cannot go to sleep. Last night I decided to be strong and avoid taking one of my pretty white pills. Result: Up all night. I had to read some of my work's 401K documentation to finally put me to sleep.

I've been trying to substitute the Ativan with a sleeping pill, like Ambien, but isn't that replacing one dependent drug for another?

Moral of the story: Be careful when taking your Ativan. It is physically and chemically addicting, and the withdrawal symptoms can be very troublesome. I highly recommend it.

Day + 123, "You Breathe, You Smile, You Pee"

Thanks to Carol for my new mantra and meaning for life. We need to spread this message throughout the world, and I am willing to be the missionary. Already, people are spreading the word.

---

But seriously...

After some rough waves this weekend, I've been experiencing smoother waters since I cut my Lasix dosage from 120mg to 80mg. So far, it seems as if my body is using the lower dosage just as effectively as it had previously. My edema is slowly disappearing from my lower legs and feet. I'm still pumping out a pound or two of fluid each day, but, it seems that I'm getting rid of it more effectively. This morning I woke up and saw the bones in my feet for the first time in months.

Of course, it's still too early to tell what is going on. I'll continue this dosage for the rest of the week and see what happens.

Massachusetts Amyloidosis Support Group this Saturday

Muriel Finkel from Amyloidosis Support Groups wrote me to remind everyone that the Massachusetts-Boston Amyloidosis Support Group meeting will be held this Saturday at the Boston University Medical Center. You can find directions and more information here.

There are a number of support groups located around the country. You can use this page to find one in your area.

Day + 122, It's My (Real) Birthday

I can vaguely recall how this day used to bring feelings of joy and elation. As a child, it allowed me to get just enough toys and games to hold me over until Christmas.

Now, the experience is something like this.

33, ugh.

Day + 121, "Pull Up! Pull Up!"

Friday was awful. It was one of those days you know would not work out right, and all you want to do is sleep it away. I took two maps and essentially rested until it was time to go to sleep. As a result, yesterday I did feel more energetic. The fatigue subsided for a bit, and the back and leg pains went away.

The drama-o-meter spang forward again this weekend, as there's been another change in how my body is handling the Lasix. Since Tuesday, I've been taking the same dosage, 120mg a day, but at a different time of the day. The purpose of this change was to prepare me for getting back into a work schedule. You see, a couple hours after you take the medicine, you have to go to the bathroom very bad. And very frequently. When I took it at 2 p.m., it was kicking in by 5. I could never make it through a Boston rush hour while on that stuff.

Also, after you do a few bazillion times, your kidneys start to ache a little bit, and you feel miserable. I also couldn't have this feeling while working or driving home -- I just wouldn't be productive.

So, since Tuesday, I've moved it forward two hours, to 4 p.m. This allows me to get through a 'work day' without any problems. However, now my evenings are miserable.

Now, whether or not this change is the reason for my recent issue, I don't know. All I know is that since Tuesday, the medicine has been working extremely good... maybe a little too good. I have lost nearly six pounds in the last three days. And can you believe it, I still have fat feet!

My body feels miserable due to this fast weight loss. I need to take some action to stop this fast slide. Today, I'll be kicking down the Lasix dosage to 80mg, and I will be taking some Pedialyte to deal with the dehydration.

Maybe my kidneys are starting to kick in? Too soon to tell.

Day + 119, Body Renovation

I should have never tried that damn yoga the other day. It was a beginner's tape, and it didn't look to be harmful. When I tried to strech my legs over my head like the kind lady on the TV screen, I wasn't in too much pain.

Well, maybe I can't blame everything on the yoga. I have been sitting and stretching and moving more than usual during that last few days. Or perhaps it's my posture when I sit at the computer desk.

For the third day in a row, I've had a sharp pain in the upper part of my right leg, near my groin. As if I pulled a ligament or some other muscle. Last night, this was compounded with some lower back pain and an ache going down my right leg.

Today, I feel miserable. I'm tired and my back aches. All I can think of doing is resting and hoping that I don't aggravate it further. I'm not taking any painkillers for it (although I could -- I've got a bag full of them!)

Another interesting development is my response to the 120mg of Lasix. For the last few days, it's really starting to kick in more than usual. It's started to drain me, as if I was on the higher dose. The edema is starting to drop -- just a bit. My weight this morning is the lowest it has been since I starting tracking it. Could this my kidneys be healing?

Day + 118, The Lipid Nurse

This is the 'sweet spot' of fall -- where all the trees are showing their seasonal colors. It's been windy for the last few days, so many trees are already past their prime, and have moved to the "dump three feet of snow on my naked branches and disfigure me permanently" phase. I've got a box of scarves, gloves and other winter paraphernalia in the back of my car that I'm sure I'll be needing to take out soon.

Last night, I received a call from a woman over at Boston Medical. It was the lipid nurse. She deals with -- you guessed it -- referrals from doctors at the clinic to patients who are having lipid problems. When she told me that she was confident that she could take care of my astronomically-high tryclyeride levels, I listened with eager ears.

She told me that two interesting things: first, that my tryclyeride and cholesterol lab results may not have been taken correctly, and second, that the medicine that I was taking, Vytorin, might not be the best medicine for reducing these values.

Supposedly, when you have a triclyeride count over 400, standard tests can be thrown off due to the high lipidity. (Lipidity, is that a word?) As a result, there is a more thorough panel of tests that can be administered to get a more accurate reading. She believes both of these numbers are skewed way too high, and this new test will give a more accurate reading, as well as give me my LDL (bad cholesterol) levels.

So, another trip to the hospital for some bloodwork on Monday, which happens to be my birthday... again.

Nadir

I saw on Beth's site that today, at Day + 7, she has hit nadir. We're all rooting for you Beth! Hang in there!

Just in case you've forgotten, the nadir is the lowest point of your immune system function during the SCT treatment, when virtually all of your white cells have been destroyed. Growth factor shots are given, and the cells start growing again after a few days. Typically a person reaches nadir around 7-10 days after the last chemotherapy is administered.

I can recall my nadir. It was the only time that I wasn't feeling well enough to post here on the blog. Between the drugginess and the fatigue, those days I really, really didn't feel like doing much. I think that the drugs I was on were really the worst part, as they really messed with your mind. It was awful.

One drug that I was on during the rebuilding, Decadron, was on my special hate list. It acted as a stimulant, which forced my mind to always race, 24 hours a day. This could pose a problem when you were really tired and wanted to rest. I remember that it made me walk back and forth in the apartment. One day I recall pacing the floors for 14 hours straight. No kidding.

I had hit my nadir by Day + 6, but three days later I was out of the basement and my system was back on track. I got off most of the evil drugs less than a week later, and by Day + 14 my body was starting to rebuild in earnest.

It's rather amazing that your immune system can be destroyed and reseeded within weeks, but when you are patient, it feels like an eternity.

BUSM Amyloid Newsletter

The Summer 2005 edition of the Boston University School of Medicine's Amyloid Newsletter came out a week or so ago. You can access it here. The file is in PDF format, so you'll need a PDF reader to open it.

Inside you'll find bios on some of the staff, as well as an update from Dr. David Seldin on the state of amyloid research today.