Overdue Update

Hi Everyone,
Sorry for the long-overdue update. I'll jump right in I guess.

Last Sunday Mama came out to help me for the week. Ben dropped me off at the airport after church and I rented a car and mama and I drove back. I left for Houston in the rental that evening and stayed in a motel so I could make my 9:00 AM appointment. I met with a bunch of people that day including the hem/oncologist who will be my doctor during the transplant. His name is Dr. Popat and I liked him a lot. He was friendly and explained everything very well and answered all my questions. He did the normal neurological testing again, minus the walking test, and listened to my heart and lungs. I've been told I have a small heart murmur, but he couldn't hear anything at all so he didn't think it would be an issue. I also met with his nurse as well as the nurse assigned specifically to the study patients (just me at the moment), the transplant coordinator, the business/insurance person, and got some blood work done at the lab. It was a busy day with a lot of waiting for appointments. :-)

M.D. Anderson is a pretty amazing place. It is in the middle of this massive medical complex basically right across the street from Rice University. It is like its own little city. There were a ton of patients in on that Monday morning, but things went surprisingly smoothly. When I went down for blood work, the waiting area (a BIG waiting area) was completely full, with people waiting down the hall. But amazingly after I signed in, they called my name within 20 minutes.

The stem cell transplant center is up on the 8th floor, which is also the leukemia floor. It was odd sitting there waiting for my appointment with a bunch of other people also there for pre- and post-transplant appointments. I felt like I didn't really belong there since I don't have cancer. I didn't know how to feel. On the one hand I'm extremely glad I don't have cancer. On the other hand, a great many of those patients will be completely cured of their cancer after their transplants, and can go back to a normal life. I don't know if I'll ever be "cured," or how long I might remain in remission, if I do achieve that. And no matter what, I'm going to be left with some permanent impairment, so that kind of stinks. But mostly it was nice being there moving forward with my best chance at slowing this thing down. And the leukemia floor is not a bad floor to be on. When I first got there and was going up the elevator, a little girl, probably 8 or 9 years old got on the elevator with her grandmother, and pushed the button to the 9th floor which is the spinal and brain cancer floor. She was so cute with her little bald head, and it reminded me forcibly of when Jacob was sick and I felt so jealous of those families whose kids "only" had leukemia. What we wouldn't have given to trade Jacob's cancer for leukemia. She was only one of a few children I saw there that day (patients, anyway), which was good I guess. It's way easier to see adult cancer patients than children.

It was interesting meeting with the business representative. She broke down all the costs for the transplant. It ends up totalling an estimated $204,000. Ouch. Thank goodness for medical insurance!

So anyway, at the end of the day they told me there had been a scheduling glitch and I wasn't scheduled for my heart tests. They told me they'd try to squeeze me in, and they'd call in the morning to let me know. So I went back to the hotel totally beat since I'd had to walk around the hospital quite a bit from appointment to appointment.

In the morning they called me and let me know they scheduled me for the rest of my tests for Friday. Ugh. Too long, obviously, to hang around Houston, so I'd have to go back home and then go back to Houston Thursday night. Oh well, I am just glad I wasn't flying in from out of state!

I drove back to Austin, returned my rental, and rode back home with Ben. Mama of course had everything running like clockwork at home.

Wednesday was nice and relaxing, since Mama pretty much took care of everything! Thursday was Valentines day and the boys had a "Chocolate Fever" day at school, based on the book by the same name. The 1st graders all came to school dressed in PJs and slippers and covered with eye-liner "chocolate fever spots." All day long they had chocolate-themed activities, passed out Valentines, and had a fun day. Mosey and I went to lunch with Ben. Yes, a very romantic Valentine's lunch out with my husband... and four year old. LOL! Actually it was nice, Mosey is a very well-behaved lunch date.

My legs are giving me more and more trouble and Mama got worried about me going to Houston by myself that night, especially since my appointments the next day were on different floors and on opposite ends of the hospital, so we made arrangements for the boys, and drove out to Houston together that night. We have good friends out here who are so willing to step up at a moment's notice.

So we drove back to Houston that night and stayed in a motel for just a few hours before getting up and ready for my 8:00 appointment. We were early which ended up being a good thing, because after my first appointment for the PFT (pulmonary function test), the nurse asked around to see if I could just do my echocardiogram and EKG right then, instead of having to come back at 10:15 and then 1:30. They weren't too busy yet, so I was able to get all 3 tests done right then. After that, all I had to do was more blood work, so by 9:30, I was completely done! Wow! I have never gotten out of doctor's appointments AHEAD of schedule!

I think all my tests went well. It's hard to tell since the technicians pretty much don't tell you anything. The EKG was super-fast, literally only a few seconds, so I assume everything looked good there. I have no idea how to read echocardiograms, but it was pretty interesting to see my heart beating away. The PFT was the most unpleasant test. You have to do all these breathing exercises into this apparatus that measures oxygen input and output. The nurse would tell me to breathe normally, and then tell me to breathe in as hard as I could, and then YELL at me to blow out as hard as I could, and keep trying to exhale for a count of ten. This is hard! She said it would feel like I had blown out all the air, but that I hadn't really. It was physically difficult to keep trying to blow out air once it was all gone, and made me really out of breath. Yeah, I know, wah wah, whine whine. A little violin is playing a sad song just for me. The PFT technician was a little confused as to why I was there. She was filling out my paperwork and asked what my diagnosis was. I told her MS, and she got a confused look on her face and asked why I was here at MD ANderson. I told her I was getting a stem cell transplant here, and so she asked why I was getting the stem cell transplant. I told her for my MS, and she was even more confused. "So you don't have cancer?" No, I don't. I explained briefly that I was in a clinical study, and that MS is an autoimmune disease and how a stem cell transplant can affect autoimmune diseases. I think I'll probably be having that conversation a lot.

SO. All the preliminary testing is done and now everything will be sent to the insurance company for approval. I talked with the transplant nurse from UHC and she looked at my policy and seemed very encouraging that approval would be pretty quick. We shall see.

Mama and I were on the road back to Austin by 10:00 AM, and back in town at 1:00 PM. Very fast trip. Joseph had been sent home from school with a fever (not a chocolate fever, but a real one!), and Ben had to come home from work to pick him up. Poor kid. He perked right up with Tylenol though, and yesterday and today he's been just fine.

Yesterday morning we got up and got ready to go to Dallas. It takes us forever to get ready and out of the house with all the kids and stuff. But we got up to Dallas by around 1:30 and spent the afternoon at the Museum of Nature and Science, which is a nice museum with a good children's section. We saw an IMAX movie and then went out to eat at Carrabas. Mama had to leave before the food came to get ready for her talk at the Eccles study group. Luckly Carrabas has good bread you can pretty much fill up on before your meal ever comes. Ben dropped me off at the Eccles so I could hear mama talk, and then took the boys to our hotel.

Mama's talk was fantastic. She talked about raising a strong family, and used scriptural references to the "house" of the Lord. The Hebrew word for house is the same as the word for family, and it really was fascinating to read all the scriptures about temples and the physical building of temples, substituting the word family for house. She did a great job and we had a good discussion afterward. I guess it was a small crowd (a very COLD and RAINY day in Dallas that day), but I thought it was very respectable. There were probably 10 people there, which is more than I've seen at some of the Miller-Eccles gatherings at our house, and that group has been meeting for years and years and years.

After her talk, mama drove me out to the hotel, which was really far away. Sorry mama! Ben did get an amazingly good deal on the hotel room, though, if that's any consolation (you can find great deals if you're willing to sort of stay anywhere). Probably not much consolation, since mama was staying at the Eccles' house anyway, and, going back, ended up going the wrong direction on the turnpike and drove all the way out to the airport (very far out of town) before realizing her mistake. She didn't get back until after midnight! I feel so bad. Texas is very tricky for a California girl since there are no mountains to which to orient yourself. At night you can easily get yourself turned around 180 degrees without realizing it. And Dallas is weird because you have all these freeways that are not very accurately named. I-35 East actually runs north south, for example. Anyway, she's on her way back here now after speaking at a fireside in Dallas tonight, and I think she is going the right direction now!

So, that is my very long update for the week. I have some cute pictures from Valentine's day, which I shall post above.