Christmas Morning 2008

Christmas Morning
Posted Dec 25, 2008 8:52am

Well, fist of all, Merry Christmas to everyone! I am still in bed at the hospital waiting for my fiance to wake, and I thought I would check out this webpage that my cousin, Suzanne, set up for me. Those of you that have people asking about me and you want to refer them to this page, please feel free to do so. I do not have too many email addresses. I think this is a great idea, and I am going to try and post on here a few times a week. It is very strange to wake in the hospital on Christmas morning, instead of my warm, cuddly bed. But, it is okay, this is the best place for me at the moment.

The first post that was sent out was the email most of you got about what I am having done this round in the hospital. This past Monday I had all of the proceedures done that we had planned. I have the permacath in my chest, which is being used for my plasmaphresis. I think this is actually a pretty neat process to watch. This machine pulls out about 1/3 of my blood and seperates it and puts it back. My plasma, where the "bad antibodies" are, are seperated and left hanging in a bag to be thrown away. I look at it as getting rid of the bag stuff and now my blood is getting nice and clean. As you can imagine, if you have that much blood moving in and out of you body there are most likely going to be side effects. The only ones I really have had are a bad taste in my mouth from the combo of this and chemo, as well as getting very cold. When I get cold I start to almost vibrate from the inside out. They will give a bolis of calcium in my IV when I get cold, and that helps warm me up. I have had two rounds of this, but we are hoping I only need three more and then can have the permacath removed. It is annoying because it absolutely cannot get wet. I was very tired after my treatment yesterday, so I am hoping tomorrow will be better since I have a break today.

I also had the MRI with contrast on Monday, after I had my permacath (line) put it. This was to be positive I didn't have a brain tumor or major infection and such. Just to rule out as much as possible. After that I had one treatment of dialysis to filter out all of the dye, which is considered extremely harmful to kidneys that are not functioning normal, as mine are not. That lasted 3 hours, which I slept through. Then I had the spinal tap, and I have to say that did not feel good at all. If you are blessed enought not to have had one, what they do is lay you on you stomach and insert a really long needle into you lower spine to draw out spinal fluid. You have to lay very still, and it is very hard to do this while someone is inserting a needle a few inches long into your bone. We are waiting at this point to get the formal reading of the MRI back, but from what can be read by my team of doctors, they say it looks much better. I think they want to get info back from the spinal tap before they comment too much.

Now, as for the Cytoxan, or chemo. I started that last Thursday. It was not as bad as I expected, I guess I just never dreamed that this would be my life at as 26 (almost 27). During infusion I didn't get sick, but the 2 days after I felt pretty sick to my tummy. There are many side effects, as with any drugs, they main one for me being lowering the rates of fertility. For those of you that know me you know children are really important to me. (More on that later I am sure...this is one that tends to lay on my heart, even though there are many options out there.) I will most likely lose some of my hair, maybe not all. They are not sure, but my hairdresser is coming to give me a Christmas Do. I am excited to get it cut. I have been so hot, and trying to keep it clean will be easier. I am also back on steroids for a short time, so my face is super round again.

The docs just came and left, and I may get to go home tomorrow. If my blood is thick enough I will get to go home after pheresis. I am so ready to get in my own bed and be with Cheston and my dogs. Well, I guess this is it for now. I can tell I will be on here a lot. I love you guys and I hope you all have a Happy and Blessed Christmas.