Hello, Old Friend

Last evening, I had my first (well, third, but we'll get to that) infusion of the drug Remicade. The wonderful Mayo docs feel that this may be a key step in finally getting whatever disease process this is fully under control. Wikipedia says:

Remicade works by blocking tumour necrosis factor alpha (TNFα). TNFα is a chemical messenger (cytokine) and a key part of the autoimmune reaction. Remicade blocks the action of TNFα by preventing it from binding to its receptor in the cell. Remicade is an artificial antibody.

This drug, and ones similar to it, are used to keep a range of autoimmune type diseases under control. I first had infusions of Remicade 2 years ago at the Hospital of the University of Pennsylvania; however, at that time, I was just way too far gone for any medical remission. Because of my prior trial of Remicade, my current one has a measure of uncertainty: people who use Remicade and then stop usage are often unable to return to the drug because the body may build up antibodies to the drug itself, causing allergic reaction. So, basically, we had infusion fun last night with lots of benedryl, eppe pin, tylenol, and prednisone sitting nearby (and one very nervous on-call resident hovering around way more than usual), but so far no drama.

There is a possibility of a delayed reaction in the next couple days, but no accute reaction is a good sign :) So, with Remicade looking good, me eatin' real food (so funny what you get congratulated for in a hospital - "Wow, you ate that whole bagel. And you took 5 walks down the hall today!" I mean, it's comical really), I am looking at a Sunday or Monday release back into civilization. Thanks as always for your support - Mary

The New Big Thing

Hi friends, I will be having a big surgery today at the Mayo clinic.  We have faith that this will mark the end of spontaneous infections; in addition to the surgery, I will be starting on medications that are often successful in controlling Crohn's disease.  Why another surgery? (Why another infection?) -- nobody really knows.  Maybe the whole problem was not taken care of last fall, maybe I should have started these medications earlier, maybe I didn't wait long enough between my surgeries in October and December to heal completely.  "Maybe" or "Possibly" are words you learn to live with.  Despite all the uncertainty as to causes and whys, I feel (more honestly than I have in a long time) that today is a positive step toward SUSTAINED health.  I can anticipate one more surgery in 6-12 months, but expect good health in the interim and beyond.  Thanks to all who bother to read and wish me well.  The support of friends has been wonderful and integral to getting through this experience.  I think I tend to sound a bit morbid -- and hey, I'm no little miss sunshine -- BUT, I am really excited about the possibility of riding bikes, hiking, taking photographs, and even just working in the near future WITHOUT PAIN and without the nagging feeling that it's about to all fall apart.  Life is hard and rarely gives you all you want, but if I can find a way to do the things I love, and to be with the people I love, in a stable and sustained way, I should be incredibly grateful. With Love - Mary