quick update from Houston

Hi Everyone,
I'm in Houston right now, sitting in my hotel room after a long day. On Monday I got a call from the transplant nurse. As soon as I saw the "Unknown Caller" on my phone, I knew there was trouble (whenever I get an "unknown caller" it is someone from either Baylor or MD Anderson). And sure enough, it was the nurse telling me that they forgot one more test they needed to do, and so I needed to stay another day to get that test completed on Friday. I was upset because we had just finalized arrangements for the boys to stay at friends' houses, and now I'd have to find a place for them to stay one more night and day. But more than that, I was upset because I'm feeling a little desperate about how few days I've got left with my boys. I was so upset that I was going to have one less day with them! After calling Ben and my mom and crying for an hour, Ben called his mom and she said she'd fly out the next day and come with us to Houston with the boys, and stay till after the stem cell collection. So instead of being away from my boys for 3 days and 3 nights, we're all together! It is great!
The boys had a fun day with Grandma Jackee, going to the Natural History Museum, the Butterfly Museum, riding on the light rail, and now they are downstairs swimming in the hotel pool after a nice dinner at Olive Garden. I'm so glad it worked out this way.
Today I had more lab work done, which means of course more blood draws. I have a very high pain tolerance, I really do, but I am getting tired of getting stuck in the arm. Shots don't bother me a bit, I don't even blink. But getting needles in my veins just plain hurts, and I'm sick of it. Every time I come to Houston, they draw blood. What are they doing with all that blood? Can't they just do all the tests all at once? Today they took 25 vials of blood!!! 14 at MD Anderson, and then 11 more at Baylor. And with the first draw, my vein collapsed after 12 vials, so I had to get stuck again for the last two. Sigh... I'm just tired of IV's for MRI's, IV's for steroids, blood draws every time I come to Houston. I'm a pin cushion! I told my brother I could never be a Heroin junkie because I just hate getting stuck in my veins.
But the good news is tomorrow morning I have a central line catheter placed in my chest, so hopefully no more sticks in the arm!
I also had a chest x-ray, training for my chest catheter, I met with the MD Anderson neurologist, and then had my final assessment at Baylor. This involved another EDSS evaluation, including the walking test. I was very nervous. I didn't think they would disqualify me from the study at this late date even if I was beyond the EDSS parameters for the study, but I just didn't want to have any doubt in my mind. So in order to squeeze under that EDSS 5.5 limit, I had to walk 100 meters without aid (no cane, no leaning on the wall), and without resting. I was very nervous about this. I had Ben push me around in the wheelchair all day to save my leg strength. I'm glad I did, because I did make the 100 meters, but just barely. It was so hard! All my cross country endurance training paid off, though, because I made it! I was mostly scared about losing my balance, and I had a couple of scary moments, but I made it and I am so relieved. So last January I could walk 320 meters without aid, and now 6 months later I can only walk 100 meters. I guess that's what my form of MS does in 6 months. I am very glad I'm having this transplant now instead of in another 6 months.
I also had a few other evaluations-- the typical MS physical stuff looking at reflexes and spasticity and stuff, but then also a peg test to test my dexterity (putting little pegs into little holes, and then taking them out again, and then again with the other hand), and a math test. All the other physical stuff I was pretty pathetic in, but the math test? Yeah, I still got it! It was sort of tricky, not really a math test per se, but more of a memory test. She put on a CD and a guy would say one number, then another number, and I'd have to add them and say the answer, then 3 seconds later, he'd say another number, and I'd have to add that one, not to the first sum, but to the second number I added in the first sum. It's kind of hard to explain, but it was a combination of a test of how well you know your addition tables (helping my 6 year olds with math helped with that!), while keeping track of the numbers the guys states on the CD. There were I think 50 or 60 questions, and I think I got them all right. So yay me. There was also a timed walking test (25 feet, assistance allowed), and a quality of life questionaire. And then signing all the consent forms. I hate consent forms. I've had to sign a whole bunch now, and I'm just tired of reading about how every step in this process can kill me (yes, I know), how I'll end up in premature menopause because of the chemo and will be unable to have any more children (yes, I know, do you need to rub salt in the wound EVERY time I come?), how the procedure won't necessarily cure my MS (wait, so why am I doing this??), etc., etc. I know it's necessary, but still, is the redundancy of consent forms really necessary? :-)
Tomorrow I have my last set of consent forms, and then I'm good to go, I think. Oh yeah, tomorrow's consent forms mean I can't take the oral sedative they normally give before the catheter insertion. I guess you can't sign consent forms for 24 hours after the sedative, and I can't reschedule my appointment with Dr. Popat, so I'll just have to go in there cold and try not to be nervous. I'm actually not too nervous, so I think I'll be ok.
Ok, one more thing and then I'll end. So while I'm at Baylor, the nurse comes in and tells me of "one slight problem." Uh oh. Apparently the appointment on Friday (for which we rearranged everything and flew Ben's mom in) needed to be rescheduled. Apparently no one is in on Saturday to process the results. So they're going to squeeze that test in tomorrow after the catheter insertion and before my appointment with Dr. Popat. This is fine, but also annoying because when the nurse called me on Monday and told me about this "one more test," I asked her if there was any way to schedule it on Thursday, and she kindly, but very firmly, told me there was no way. And now, magically, it is scheduled on Thursday after all! Oh well, I'm just glad it got rescheduled to an EARLIER time and not to a LATER time, because I don't want anything to interfere with the stem cell collection. And I think I have to be here on Friday anyway since I have to attend some training classes for the catheter or something.
So anyway, that's the update. Things are moving forward, and it's nice to cross all of these things off my list. And I'm really grateful for the extra few days I can spend with my boys.