I'll Take What I Can Get

Hello everyone! I am so excited about the new subscriber feature my friend Jess helped me to install on the blog. By the way, have I mentioned that I detest the word Blog? I so prefer online diary. I suppose it is a resistance to the changes happening in the world and my general resistance to technology and most things computer related. Some part of me still pictures Mr. Wild back in Montvale and that awful computer class we were forced to take on commodore 64s. Remember the big black screens with all the green writing and all those terrible flickers? It makes me nauseous just thinking about it. Kathy and I would do just about anything to avoid that class. We spent hours upon hours re-arranging the art store room and putting up the displays in the windows we had throughout the school. Oh good old Fieldstone Middle School!

Forgive the rambling. I know this is a site about Myasthenia and my travels, but sometimes I just don't feel like talking about it. Or writing about it for that matter. I suppose that is why you all check the site, though, so I guess I will fill you all in. This morning we spent a few hours in the ER with Katherine with suspected Appendicitis. It looks like it is just a tummy bug, but I am glad that I brought her in, regardless. She was just fantastic with all the poking and prodding and the xrays. I was very proud of her. Life goes on, despite all that is happening in my body! My beautiful children still need a Mommy- and I am happy to fill the position.

Yesterday I spent first part of the morning with the hemo/oncologist to have MORE blood work and then getting the results of the Bone Marrow Biopsy. It is amazing, all that I know about MG and all that I don't know about blood and bone marrow. I became pretty overwhelmed. I am sure Dr. Buff (the hemo/onc) must feel like he has answered the same questions a million times. Unfortunately, I continue to ask the same questions repeatedly and rephrased either because I don't understand the answers, or because I would like to get different answers. All in all, it is good news. There isn't anything terrible going on in my marrow. Apparently the Red Blood Cell/ White Blood Cell ratio is off- with there being more RBC that are necessary. Dr. Buff is taking this as a good sign that whatever the event was that caused the severe anemia has passed. It could have been a virus in my blood (which we tested for, but could have already cleared by the time we did the tests) or it could have been some medicine that I took. I am going with the second choice although the Doctors are all skeptical. Cyclosporin doesn't usually cause hemolitic anemia.... but then it also doesn't totally incapacitate most people like it did to me. Nor are there many myasthenics who are so drug resistant they are forced to re-boot their immune system. So for the sake of my mental stability and to allow myself to continue to think positively, I am going to blame the cyclosporin.

The really excellent news is that it was worth doing the BMB- I would have been kind of upset if he had said it was useless! He is now comfortable going forward with the chemo, so long as my hematacrit doesn't drop again. I had 60g IVIg immediately after my appointment with him and he wants to wait a week or two to be absolutely certain that it isn't the IVIg causing the anemia. I am sure it is not. For now I am holding steady with a CRT of 29. Supposedly it should be around 44- I am pretty sure mine has never been over 37, so we are hoping to get it up in the low 30s. Dr. Buff said that I do have a lot of immature red blood cells which would also be indicative of a problem that has resolved itself.

The IVIg went well this time. The fantastic nurses up in the infusion center took great care of me, and went ahead and gave me the zofran (anti-nausea) before I even started the infusion. I then ordered my standard grilled cheese, french fries and chocolate chip cookies with lots of ketchup. Add a diet coke and I am in heaven. Well, not heaven, exactly, but I will take what I can get.