Transplant Date Set

It's been very hot over the last few days. It's enough to make everyone tired and miserable. For me, it's been double trouble as I have been blowing up like a balloon. The heat makes your body retain fluid, and that's one thing that I've been doing a little too much of anyway. I've been forced to up my Lasix dosage to incredible amounts just to keep in check. The bottom line is that I haven't been able to get through the hot summer days without some trouble, which is very depressing. I hope that this standard of quality of life improves as a result of the second transplant.

That's not to say that I am completely faultless. I must admit that I have been 'cheating' a 'little bit' on my low-sodium no-sugar diet. I figured that once I start my treatment I won't be eating well for a while, so it's best to get it out of your system while the going's good.

Oh yeah, the second treatment. I've gotten the OK from my employer to go forward with my scheduled date, and my mother has been graciously given some time off play the part of caregiver in my second round. So, here's the dates:

• Wednesday, August 16th: Pre-evaluation. I check-in, make small talk with the doctors, and take a couple of blood tests.
  
• Thursday, August 17th: On this day, the catheter is installed in my chest. From this point on, there's no going back!
• Monday, August 21st and Tuesday, August 22nd: These are the days you receive the melphalan.
• Thursday, August 24th: The stem-cell recovery.

Based on this schedule, I should be out of the hospital by the end of September, and getting my hair back for the holidays. I promise that like last time around, the entries will be more frequent as new develops. I also hope to take more pictures to give you a better idea of the experience. Drop me a line or a comment if you have any questions, and I'll do my best to answer them.

Amy's Got a PhotoBlog

Frequent readers know that our friend Amy Lloyd has taken to posting some awesome photography work recently on her web site. Now, she's taken it a step further by making her very own photography blog. I recommend you stop on by and take a gander.

While the topic is on about photography... One of my regrets looking back during my first stem cell transplant was how very few photographs I took. There were so many moments that I now think would have been important to keep in posterity.

So, in preparation for my second stem cell transplant, I bought a Canon Powershot A620 to take videos and pictures of the entire process. With 7.1 megapixels and 21 different shooting modes, I am well prepared to document my experience. Well, that is once I learn how to navigate all of the menus and learn to take a picture with it.

Here We Go Again

On Monday afternoon, I got the following e-mail from my doctor:

We have looked at the results of urine immunofixation electrophoresis from last week and the lambda light chain band is more prominent than even the week before. It, however, remains very faint, at the limits of visual detection. Therefore, we do recommend a second stem cell transplant for you.

At least it didn't come as a total surprise. Deep down, I knew that when the results weren't all so rosy, that some sort of additional treatment would be coming down the pike. It's like June 2005 all over again. Between the news, the heat and all of the associated stress, I have become utterly miserable.

There's not much more information to report at this time. I'm in the process of setting up an appointment, so I don't have a timeframe yet.

Like I mentioned in my post last June, preparing for a stem-cell transplant is like managing a big project. You need to determine how long you will need care, and gather/allocate resources to make sure that you are taken care of. It may be a little crazy finding care this time around, as my mother may not be able to stay out here for very long. I'm not panicing yet, but there is still a long road ahead. Although I am very sad about this news, I am thankful for the doctors at BUMC, and for everything that are doing to help stop this awful disease -- despite attempts to prevent them from trying.

I'll post more information as it develops.

Exhausted

Back on Tuesday I had a very active day. I had a strenuous session at my rehab session, followed by a very busy workday. This is not unusual for me, as I still work and move at the speed that I had been before I got sick.

So, by that evening, I was physically exhausted. It seemed impossible to do anything but lay on the couch and watch TV. When I woke up that next morning, I felt 10 times worse. Pure, unadulterated physical exhaustion. (The 90 degree heat didn't help matters either). It is a miserable feeling that only resolved itself as the day progressed. I've been in this 'exhausted' state for three days now, with very little improvement. The symptoms are lethargy, and some serious moodiness.

At my one-year evaluation, I started to reduce my dosage of midodrine (a blood pressure medication) in an attempt to wean myself off of it. I'm guessing that these two events may be related.

As of today, I went back to my normal dosage. I feel a little better, but still will need the weekend to determine if that's the real cause.

The Wait

I am now in a holding pattern... well, at least until I get the results of a last-minute urine test to confirm that there is still a problem.

Supposedly, on the first test, they saw the faintest indication that there were still amyloid in my system, but it was really a close call. Two weeks ago, they asked for me to take another test to confirm what they found.

It's a little unnerving, for the doctors are not in agreement as to what my next plan of action will be. Usually, the modus operandi is to sit and watch it for a few months. However, in my case, it's so clear cut. While I've shown a great response with my bone marrow, and recovered well from the first treatment, you also have to factor in the test results, and that my kidney has not significantly improved at all. Now things start to look very suspicious.

In the end, it will be up to me to weigh the evidence, calculate the odds (and perhaps, flip a coin) to make the decision on what I have to do next. It's a little unnerving having to make the call, as there are risks related to either decision.

I expect that the doctors will discuss my situation on Friday, and that I will speak with them next Monday.

One Year

While checking off my weight and medication notes in my log, I noticed that today was Day +365. That's right -- one year ago today I received my stem-cell transplant. It's funny how involved the entire process was, yet how little I remember of it. Perhaps it was all those drugs I was taking.

Since I don't have any additional information on what my next step will be, I really haven't been worrying about it. It seems that it could go either way, and it will be my decision once I get more information (which should be sometime next week). I was thinking that another stem-cell transplant was definitely in the cards, but since I am out of immediate danger, now I'm not so sure. Either way, I'll be eager to make a decision and move on.

500

On July 3, Team Tony reached another monumental achievement -- it has now entered into the Top 500 teams list, with over 4800 work units folded, and nearly 800,000 points scored. That would be roughly equivalent to nearly 9 months of non-stop calculations on a supercomputer. This is an amazing achievement, considering that there are nearly 50,000 teams in the Folding@Home program, and that the team is only 10 months old.

Activity on the team has slowed in the last few months, but we still had enough inertia to pass through this amazing milestone.

If you haven't browsed the Folding@Home news lately, the primary Investigator for the program, Vijay Pande, won the Irving Sigal Young Investigator Award from the Protein Society for using distributed computing as a means to speed up research for protein-folding diseases.

Of course, if you haven't joined the team, perhaps now is your chance.