Tuesday, July 8 - Nothing Exciting

Chris got the "day off" today from the trip to the hospital. As they saw some progress with the blood counts yesterday, I guess they wanted her to stay home and use the day to focus on getting some rest, getting a little exercise, and trying to get the nausea under control. I would say we were two out of three in meeting these objectives. Chris had some rest, with sleeping in and a number of naps. She went down to the courtyard and walked twice for about 15 minutes each time, getting a little sun and fresh air. She has to wear a hat (avoiding a sunburned scalp) and her surgical mask, so she really doesn't enjoy it, but knows she needs to push herself. Unfortunately, as if on schedule, she got sick again tonight. This has probably happened now every day for over two weeks in some form or another. Nobody should have to go through this like she is, but she remains stoic. To be honest, for the first time, I hear some anger in her voice. She doesn't let herself slip often, but I know this is really getting to her. She will fight through this emotional trough, but it actually takes energy to get yourself back up mentally, and she really doesn't have much energy. So tonight she went to bed early, just to get the day over with sooner I believe. But even after a tough day, she always says: "I know tomorrow will be a better day". So overall she remains positive, as she knows how important that is to beating this, but she clearly is getting some small dents in her armour.

One thing I have been trying to get smarter on is how the drug trials work. We were offered the opportunity to participate in a drug trial at the very start of her treatment, and we did some research and contacted some other experts (thanks Ron) and we decided against it. In retrospect, we think it was the right decision. But drug trials and the pharmaceutical industry are very interesting to learn about. Of course pharmaceutical firms are "for profit" entities, and they are vilified in the press all the time, but in the end, they do develop amazing cures. I honestly believe we take for granted the drugs that have saved lives across the world (think of small pox vaccines, hepatitis, influenza shots we all take in the fall) and some organization had to invest significant dollars to develop this drug, confirmed by a trial, produced with high standards, and distributed. So I will avoid politics here (again), but I wanted to use this off topic diatribe to simply point out a very interesting site online that lists all clinical trials for all kinds of diseases.

This is sponsored by the National Institute of Health:
http://clinicaltrials.gov/ct2/home

It shows all clinical trials going on worldwide that the NIH is tracking, and I believe it is a great example of a valuable government service (words I very rarely use together). You can search on almost any disease, e.g, amyloidosis, heartburn, bladder cancer (B, our turn to pray for you now), and even the heartbreak of psoriasis. If you are aware of a loved one who suffers from a disease, and are interested in learning about all clinical trials (closed, active or proposed), and their status, this actually is a very powerful site. I can assure you I know every single trial around primary amyloidosis, who is sponsoring them, etc.

OK, again, sorry for my meandering muses.

Chris and I are anxious for a very successful day tomorrow. I am counting on good blood counts, a rock solid stomach, and her smiles that let me know everything is all right. Nothing makes my day more than seeing her smile. Tomorrow I know I will see many of them.