home again, home again, jiggedy jog

The first thing to say is that I'm so glad it's this week and not last...
This past week was my big Houston trip for my 2 year HALT-MS evaluation. Here's how it went.

Monday: Videotaped me walking 100 meters back and forth down the hall. Joseph and Mosey helped videotape measuring the hall so I could demonstrate how long it is (11 meters, 10 cm), and then all the boys "helped" videotape me walking. Meaning I set up the video camera on top of Spot's cage and the boys ran in and out of the room giggling. It was lots of help. :-) It wasn't easy, but way better psychologically than walking the dreaded hallway at the Baylor Neurosensory building.

Tuesday: Left home at 4:30 AM, got to MD Anderson at about 8:30 (thank you Houston rush-hour traffic...), got blood work done (needle stick #1), then an EKG, then a chest X-ray. I was on my way home again at around 10:30 AM. Home by 1:30. The boys were with a babysitter, but I got home in time to take them to horseback riding.

Wednesday: Ben and I left home at 5:00 AM after picking up the babysitter (poor girl, that's a miserable time to start a babysitting job!). Got to Houston right at 9:00. After sitting in the waiting room for about 15 minutes feeling sick with anxiety, they finally called us back. Dr. Hutton has a new nurse who seems to really have things together. I've had "issues" with some of the previous nurses. :-) I had my neurological exam which consisted of reflex, sensory, and eyesight tests, a peg test (picking up little white pegs and putting them into little holes on a board, and then taking them out and putting them back-- timed 2x on both hands), the infamous math test (which I believe I aced again), and a 25 foot timed walking test (with my crutches). And, Dr. Hutton accepted my videotaped walking! I brought it in on a memory stick and he played it on the computer in the exam room. Yay! Being able to do this will vastly reduce my anxiety about future exams. Then there was yet more blood work (needle stick #2), and then I was done for the day!
Ben and I talked with the nurse for a while. I discovered that there have been 4 total patients involved in the HALT-MS study here in Houston. There were 10 that qualified, but most weren't able to get insurance approval. In fact, 2 of the four paid for the entire procedure out of pocket. They had to deposit $350,000 before they could even begin. Amazing. So, I guess essentially only ONE patient actually got insurance approval. I didn't get insurance approval. Ben's company paid for it. I hope that the results of this study are really good, because it's so sad to me that insurance companies can't see that a stem cell transplant has a good chance at being far less expensive, in the long run, than a lifetime of regular MS treatments and increasing costs as disabilities accumulate. I can imagine how devastated the other people who qualified for the study must have been to be unable to go forward because of insurance hang-ups. I mean, to have the chance for a real cure!! All the patients who qualified for this study qualified because they failed all other treatments, and their MS is of the progressive type. So, being unable to be a part of this study is essentially a death sentence. Maybe (hopefully), a long-term death sentence, but nevertheless, there it is. Everyone with my type of MS will die of MS complications, unless something else kills them first. None of us will die of old age. Even if my MS eventually relapses, at least I will know that I did everything I possibly could. I will not be tortured wondering "what if" or "if only."
Anyway, when we were done at Dr. Hutton's office, Ben and I drove out to the Galleria and we ate lunch at Cheesecake Factory before he dropped me off at the hotel and headed back to Austin. I spent the rest of the afternoon decompressing. I took a nap, read my book, and watched 2 episodes of Mythbusters. It was very nice. :-)

Thursday: I took the 8:30 AM hotel shuttle to MD Anderson and went to the Fast-track lab for more blood work (needle stick #3), and then waited (and waited, and waited) for my appointment with Dr. Popat, my transplant doctor. My appointment was at 11:00 AM. I finally saw him at 1:00. He must be a busy doctor, that's all I can say! He is an incredibly nice man, though, so I can't hold it too much against him. :-)
Then I went over to the Apheresis center and had another apheresis procedure. This is where they take blood from one arm, run it through a giant machine and extract out all the CD34 cells (hematopoietic stem cells), and then return the blood back through my other arm. This was lots of fun. Not. IV attempt #1 blew out a vein in my left elbow (needle stick #4). And this was after 2 different nurses dug around in my arm for a while trying to make it work. Youch. They ended up putting the needle in my forearm (needle stick #5), and happily the needle in my right arm (needle stick #6) went in without a hitch. The last time I had apheresis done, I had a central line in my chest, so it was a bit less traumatic. Although, all things considered, I'd rather have my arms poked a few times than get another central line placed! The annoying thing about having the IV's in my arms, though, was that I couldn't move my arms at all. They have to leave the needles in the veins, instead of pulling them out and leaving a little catheter like they do with normal IV's. And so, of course, I can't bend my arms or else the needle will puncture the vein, so I couldn't read my book or change the channel or scratch my nose, or anything. There was an older lady sitting by her husband in the bed next to mine and she was observing the dramatics with getting the IV's placed and she came over and talked to me for a while. She said while she was watching me that 2 words came to her mind: "tough cookie." I kind of think that all the patients in that whole building are tough cookies.
Anyway, after that was done, my friend Judy came and picked me up. She drove out with my boys and her sons, stopping at the Blue Bell Ice Cream factory in Brenham. She was a lifesaver. I had to have someone come out to Houston because I wasn't allowed to drive home on Friday, and Ben couldn't take that many days off. So Judy came and spent the night on Thursday and took care of the boys all day Thursday and all morning Friday. She earned a lot of brownie points.
Judy dropped me off at the Children's Hospital for my MRI. My appointment was at 6:30. I didn't actually go into the MRI machine until about 8:15, though. That's another place where I have never been seen on time. But I really don't resent it at all, because generally they are running behind schedule because they have to fit in emergency MRI's after the days' regularly scheduled scans, and all I can do is feel so sad and so sorry for those little children and the families that are there having their lives turned upside down... Anyway, after another blown vein on the back of my hand (needle stick #7), the nurse found a usable vein in my right forearm and placed the IV for the contrast dye (needle stick #8). The MRI scan was about an hour and a half. I watched the first half of Twilight, although I could barely hear it over the noise of the MRI machine, and the left side of the goggles was fogged up. So I probably shouldn't judge the movie based on what I saw (or didn't see). Still, it beats laying in the machine going crazy! The only problem was that at the beginning of the scan, when the technician came in to adjust my head position (they always have to run a couple of scans before they get the positioning exactly right), he took the pillow under my knees, and then forgot to replace it. I was laying on a hard table, and my lower back was killing me by the end of the scan. There's always something! Still, it was not one of the most unpleasant MRI's I've had, so for that I'm grateful!
After the MRI, Judy came and picked me up. Those poor boys were so tired! It was past 10:00 PM and by the time we got to the hotel, they were ready to sleep. And so was I. :-)

A couple of thoughts on this day. First of all, it is always emotional for me to go to MD Anderson. Every single patient there (except me) has cancer. I sit in the waiting room for the SCT clinic and look around at everyone there. Everyone either has had or will be having a stem cell transplant. A lot of people will not make it. It's especially hard to see the younger people there. I saw a couple of young patients probably college age. How many other college students are fighting for their lives? I sat next to a couple probably my age. The wife was the patient, and she probably has some kids at home. It's hard to see all the people there and to know that every single one of them was not expecting and not wanting to be there. Most of them have families. Children and parents and siblings and friends whose futures they may never be able to see or be a part of.
I can relate to the families of cancer patients, having lost a brother to cancer. But until all of this MS stuff, I've never really been able to relate to cancer patients themselves. Having to face your own mortality, being forced to confront the possibility that your life and all your plans and dreams and hopes will be cut off, having to contemplate never getting to see your kids grow up, wondering what your spouse will do if you were to die, or having to accept that you may never even have a spouse or children, all of these things are pretty terrible. Not pretty terrible, extremely terrible. Life is not fair. I feel like I'm constantly walking on this knife-edge of hope and despair. I hope, hope, hope that I will be a success story. But I know that at any day I could get news that will push me over the edge and I'll be having to face all these horrors. And I'm a lucky one, because even if my MS does relapse, I can certainly expect to have some years of life ahead of me.
So, anyway, MD Anderson is a tough place. I admire all the doctors and nurses and other people who work every day fighting a disease that will likely claim many, and in some cases most of the patients they are working for. I admire cancer patients who have to endure months and years of chemotherapy and surgery and endless procedures. I admire and stand in awe of cancer patients who undergo more than one stem cell transplant. I honestly do not know if I could do it again, knowing exactly what it entails.
Anyway, on to finishing my week.

Friday: We woke up and had breakfast in the hotel. The boys love hotel breakfasts! This hotel had a Texas-shaped waffle iron, which made it especially special. Then we packed up and loaded up the boys and our stuff, and Judy dropped me off at the Baylor clinic for my lumbar puncture. The last time I had one of these, Dr. Hutton just did it in his office. But for this one, he sent me over to the diagnostic center for an extra-special lumbar puncture under an X-ray machine. But first, naturally, they had to do more blood work (needle stick #9). :-) The doctor extracted 5 tubes of CSF (cerebral spinal fluid), instead of the 1 tube I had removed before, so maybe that's another reason Dr. Hutton sent me over to the Baylor clinic. In his office, I just sat on the exam table and leaned up against another table, so I was more upright. This gave me a massive headache, but it was over quickly and once I laid down it didn't hurt. But this time, with so much CSF being taken out, I'm glad I wasn't sitting up. Instead the doctor had me lay face down on this special table that could be tilted at various angles. Then she numbed my back with lidocaine (probably a few different needle-pokes here, but I don't count needle sticks unless they're going into a vein or something like that). She took a series of X-rays before inserting the needle into my spinal column (needle stick #10-- I do count this one!). It took quite a while to get all the CSF-- probably 15-20 minutes. I got another really bad spinal headache, even when I was laying nearly flat, so I can't imagine how excruciating it would have been if I had been sitting up... After the lumbar puncture, I lay in recovery for 2 hours while the CSF regenerated. The headache didn't last too long, thankfully. AND, while I was laying there, Dr. Hutton's nurse came over to collect the CSF, and told me the extremely welcome news that my MRI is still unchanged, meaning no new lesions. Which is very, very good news.
Judy had taken the boys to the Children's Hospital, and then came back to pick me up. They wanted her there by 12:30, even though I wasn't allowed to go until 1:00. That was annoying, because sitting and waiting in a recovery room for a half hour is not the greatest fun for 4 little boys. But we played animal 20 questions and soon enough I was released.
Finally, I was DONE!!
We started back home, stopping at the world's slowest Sonic for lunch outside of Houston, and then straight to Austin. We were home by about 5:30 PM, by which time all the numbness in my back had worn off and I was pretty sore. But I almost didn't care because I was SO glad to be home!!

After taking a whole heck of a lot of ibuprofen, it was time to get the boys ready to go to L.A. the next day! I cut their hair, much to the consternation particularly of Joseph ("It's my hair, mom, why can't I decide if I get my hair cut or not?!" "Because you are still a child living in my home and until you are an independent adult living on your own, I get to decide when you get your hair cut."). Sometimes it's tough being a kid. :-) And then I had 3 loads of laundry to do, and 3 additional loads of laundry to fold. I was up very late.
Happily, Chrissy was there to keep me company.

Saturday morning we got up and the boys packed for their trip to Grandma camp. They've been looking forward to this for so long. For weeks and weeks, actually. They've been asking me every single day, "How many more days until grandma camp?" And then there's the usual discussion about whether or not you count the current day in the count-down.
We had explained to them the process of flying out there as unaccompanied minors. Brigham was apparently thinking about this and came up to me and asked, "So we are going to be alone minuses, right?" Ha, ha! Alone minuses!! I explained to him what "unaccompanied minor" meant, and I think he's clear on the terminology now. :-)
We drove to the airport and watched as the boys marched down Gate 11 and got on the plane, all by themselves. They were not at all scared, but I'll tell you it is a very disconcerting feeling to me, watching my kids leaving me to get on a plane all by themselves. I have no idea how I'm going to let them go off to college, let alone on their missions... I guess it's good I have 9 more years to get ready for that.
So, I've got the next 5 days with no kids! I've got a whole list of projects to be done while I'm here alone during the day. We'll see how much I'm actually able to do.
Here I am with my "alone minuses" before their plane took off.


And that catches me up to today! Ben and I went to church all by ourselves this morning, and he's making tomato-basil soup for dinner while I'm typing away on the computer. Mister is moping around, wondering where all his playmates went. :-)