I do recall from my “very long ago” last post that this post-transplant time has been a roller coaster ride of epic proportions…right?
I continue to be right about this!
So, at the end of October and before Halloween, I tripped and fell! Yeah, I kept tripping on my toe and it was only a matter of time before I came crashing down and, well, that is exactly what happened while walking with my baby girl down the hall to her daycare class. She decided to walk behind me because she was trying to play hide and seek with a teacher down the hall. I just took a step, tripped on my stupid right toe and fell. I got up and had to sit down on a bench that was next to us. My sweet Sammie was so upset, she kept saying, “Mommy fell” over and over. A teacher who saw what happened and knows our situation came over, told me to stay there, and took her to her classroom. Then, he came back and offered to help me to the car. I have to say a huge thanks to him for helping in this situation…how EMBARRASSING!
Anyway, when I got home, I called my husband at work and told him that I needed to get a cane to help until things get better with my leg. He was going to be going on a work related trip that afternoon for a few days and I could not imagine walking without some kind of help. He came home and took me to a medical supplies store where I found a cane. It was unbelievable how much more confident I felt with a little assistance. I had fought the idea of getting a cane for a long time and before the transplant, I should have had one because I was walking while holding on to anything including: the wall, a railing, my son…you get the idea. I guess what I’m trying to say is that I should have had a cane before the transplant. I just didn’t want to be seen using one! Hey, you live, you learn…
The fact that I fell, made me really angry because I felt like I went backwards with my ability to get better. I mean, gosh, I had a transplant to get rid of my MS or at least stop the progression…what the heck…I lost hair for heaven’s sake…I went through a lot…this could not be the result!
Then came my one year evaluation with Dr. Balabanov, Dr. Burt, and many of the other wonderful people who helped make this transplant possible or assisted with my care. It was a week after my one year stem cell birthday and I had my MRI which lasted longer than normal because Dr. Burt wanted to see if there were any new or enhancing lesions on my thoracic spin. Talk about a long time in that machine! Thank God they offered me music on headphones to pass the time. They are getting better with finding my musical choice…tons of rock! I mean, who wants to sit in an MRI machine for a few hours and listen to sad music? Not me!
After the MRI, Jim and I met up with my girls who had the transplant the same time as me and their significant others for dinner. We also had a short visit with another girl who was a week ahead of me for her transplant. It was so great to see all of them and their progress is spectacular! I am so jealously thrilled with how well they are doing! It does prove that this transplant works and everyone is different, meaning it is going to take more time and patience for me to get better in that one stubborn area of resistance…
The day after my MRI and required bloodwork, I met with Dr. Balabanov (Dr. B.). He is a great doctor who totally understands this whole process.
Dr. B evaluated me and decided that I have incredible strength. He feels that my leg has a lot to do with “mechanical issues” in that over the duration of this disease, I developed a strange way of walking that includes the inability to lift my right leg due to hip weakness. He felt that I needed to get a rehab doctor on board who specializes in neurological problems and had me make an appointment out there to develop a program for me to do at home. Needless to say, I left his office feeling pretty confident that this walking issue had nothing to do with the transplant and was, in fact, something that needs more intense work.
Then we met with Doctor Burt.
They found a new enhancing lesion in the frontal lobe of my brain. Yeah…
I know you are all thinking what I was that day….WHAT!!!! I went through all of this and the disease is still hanging on!!!! I’m, as I would say in front of my kids, VERY ANGRY!!! Needless to say, this took a few moments to sink in. But, thankfully, I was sitting there with my husband, who seems to really know a lot of stuff and he discussed with Dr. Burt about what to do next to finally kick the MS out. The answer…
So, it was decided at my one year evaluation that I would get one Cytoxen IV a month for six more months and this would finally give the MS one final aggressive kick that it needed to go away. Apparently this has happened only a handful of times before and with further immunosuppression, the disease says buh bye. I don’t mind doing this and am remaining hopeful that in the end, I will come out ahead. I also wanted to say that the other tests that they evaluate my abilities on went pretty good for the most part. The peg test was done right after I found out about my new lesion and was a complete failure. I did have a lot on my mind while trying to put those little round pegs into the little round holes after all. But, after talking a little bit with Kim, the nurse; I was able to walk faster for the 25 foot timed walking test without using my cane and did better with the wonderful math test they gave me. Both of these tests showed an improvement compared to the 6 month results.
So, this makes me wonder….brain lesion, huh?
Hey, maybe it was really a headache.