Been A While....

Kate and Tom ski at the Powderhouse!


Dude.


Our lovely little lady.

Okay, sorry to everyone who has been wondering what is going on in Dentonland. I hope you all had a nice holiday season. Ours was very busy and filled with lots of smiles and happy children.

It is time that I sit down and finally write to you all again. At the end of November, things were looking very positive. I was going to the hospital once every other week for 30 grams of IVIg (intravenous immunoglobulin). That is half the dose that I had been getting before the chemo- and back then it wasn't even holding me the 2 weeks. Everyone, including my doctor down in Boston, was thrilled. Although chemo didn't put me into a full remission as we had hoped, I was so vastly improved, that we were, and are, calling it a huge success.

Quite honestly, Jason and I were cautiously excited. It is hard to completely believe that all is well when you have been through as many ups and downs as we have with this disease. The idea of continuing chemo for a few more months was kicked around, but we decided to let things settle down a bit and give my body a chance to start healing. I find it amusing that the one drug that has helped me the most (cytoxan) is something that I need to heal from! What happens is that the chemo destroys a good part of your bone marrow- which is where the antibodies that were causing the myasthenia come from. Our plan was to kill off enough of my cells that my body would be "tricked" into an infant state and my immune system would then slowly rebuild itself- preferably without the myasthenia gravis.

As the holiday season marched on, my immune system seemed to be getting back to normal and all my blood work looked great. The IVIg was still holding me nice and steady. At the end of each 2 week period, however, I definitely felt the need to get in there for my "go juice" as we like to call it. I would start slurring about 4PM on the Saturday before the Monday I was due, and it would slowly progress. The only glitch seemed to happen when I was stressed, overtired or had an infection. If there is someone out there who knows how to avoid those things while raising 2 joyfully active children with a very busy husband please fill me in! heehee

The doctors were still very happy, and so were we. Dr. Gorson down in Boston recommended that I try to lower my dose of IVIg to 20 grams or that I try to space them out to every 3 weeks so we could get a baseline for just how improved I am. Dr. Logan, Dr. Gorson and I all agreed on this plan- I was pushing harder for the lowering the dose rather than increasing the duration, but I was willing to try either one as soon as the holidays passed. Due to a change in insurance, I opted for the change in duration and save our family 4 thousand dollars in the process. Unfortunately, things didn't go well, and I really felt lousy there at the end of the 3 weeks. That was in the beginning of January. I feel like I have been playing catch up ever since December.

Last week I went in 3 days early. This week I am going in 6 days early. I am praying that this will do the trick and get me back on my every other week schedule. Dr. Logan is blaming the weather. I am not so convinced, but I will happily blame mother nature, just so there is someone to point the finger at. I was feeling pretty down about the whole thing... like how is this happening AGAIN? What we all need to remember is how vastly improved I am compared to how I was. Yes, I am still totally dependant on the IVIg. I am taking the kids skiing, swimming, going to the gym for regular workouts, though! Last year that would have been a crazy thing to even consider. I couldn't even make it through the day without taking a rest- often even needing a nap.

So the plan? Hopefully I will get back in my old routine and stay there. Most likely, most definitely, I will be going through another full course of chemo in the spring unless something drastically changes. I could probably push to start now, but that would ruin the ski season plus being bald in the summer way more comfortable than being bald when it is 5 below! LOL Perspective is everything. Jason and I are in good spirits, the kids are all set with our wonderful friends and neighbors helping out when I have treatments, and this is just another bump in the road.

Please keep me in your prayers and envision me wrapped in a blue blanket of health and love tomorrow at 10 am. If you would like a template for thinking of me, please refer to the previous blog entry 3/20/08 Chemo Tomorrow Thank you all for your awesome continued support and positive energy!