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.