How are you? How are you doing? What is going on? I know I ask people these kinds of questions at least 6 times a day. I have gotten to the point where I don't even know how to answer any of these questions. My current response is "it is always better to look marvelous than to feel marvelous"! How about this one, "I vacillate between extreme joy at the wonderful family, home and attitude I have and feeling crushed and disappointed that I have spent a good part of the last 14 years fighting a crazy battle with my own body." Not that I mind the questions. This is a private battle that is very public. Everyone has been so kind and supportive. I don't know how Jason and I would be managing without the wonderful giving natures of our friends, neighbors and family members.
I mentioned in my last blog entry that we would likely be starting Cytoxan (chemotherapy) again in the spring unless something drastically changed. Well, apparently I need to update the blog more often. I had my first chemo treatment 2 weeks ago yesterday (second round). The IVIg is only holding me a few days at a time. I have managed to only go in once a week for it, but even that feels like a stretch sometimes.
I am set for an IVIg on Friday- we are going to go back to the 60 grams that I used to get before I started chemo the first time. The plan is to give me IVIg every other week and chemo once a month for a year. The last round ended up being a year, but it wasn't always full strength. The first 2 treatments were lower doses because of the mystery of the severe anemia and necessity of all those transfusions. Then I had 6 months of full strength and 2 months off then another dose at full strength.
Dr. Gorson down in Boston thinks that we probably just didn't go far enough in the last round of chemo. We didn't kill off enough of my bone marrow to make the change I needed. I last spoke with him a few weeks ago and he was extremely supportive and almost as disappointed as we are in the outcome of the last round of chemo. At the moment, he is running a clinical trial that I would qualify for- it is for treatment refractory myasthenics (no drugs produce long term remission, i.e. ME). We both agreed that this is not the time for me to try it, because you have to be off all meds for 3 months before you can begin and you have to travel to Boston several times a week for 41 weeks. That just isn't realistic for me right now. I have trouble talking, chewing and swallowing just 3 days after infusions. We don't dare to imagine what I would be like after 3 months of no meds! If anyone knows myasthenics who might be interested and eligible, please contact me or Dr. Ken Gorson at St. Elizabeth's in Boston.
I am blessed to be surrounded by an insanely helpful and extraordinarily talented medical team. In fact, my local neurologist, Dr. Logan, called me before he went on vacation to give me his cell phone number. Who does that? Incredible. As I mentioned, we have a great support system in our friends and family members. Jason, the kids and I manage to make most moments pretty memorable around here, and the house is still upbeat and cheerful as often as possible. We are doing the best we can with what we have been given.
A special thank you to Kimberly, Suzie, Ellen and Margo for all your love, listening and help with the kids the past few weeks. :)
