Back to Back

Forgive the title of the blog post-- I'm running out of cheesy back related puns :P

Since my last blog post, I had my Disneyland 24 hour mini vacation, which was amazing! It was a welcome break from my back to back appointments, treatments, and such that seem to go on and on. I wasn't able to go on some of my favorite rides, which was disappointing, but I was really pleasantly surprised that there were rides I could safely go on and enjoy. I used my own wheelchair in Downtown Disney, but had a hard time propelling myself, so I rented a scooter to go into California Adventure. It was great to spend time with my friend Brittany and her mom, who live in Seattle, that I rarely get to see, and to hunt down all my favorite Disney food finds. I may or may not have brought home a giant Jack Jack Cookie Nom Nom, on top of a safe Mickey Ice Cream bar, a nut free pasta dish... Disney certainly knows how to do allergy friendly food right.

Disney!

After the fun in Disney, I was quickly back to my back to back appointments and not-so fun stuff routine. I was nervous for my two appointment with the orthopedists because I have been getting some scary muscle spasms in my right leg, plus the back pain, and the finding of the compression fractures in my MRI that I mentioned in my last post. The first appointment did not go well. It seemed like the doctor was trying to be nice, and felt bad that he couldn't explain my pain, but just said that from the one view of my MRI that there were no explanation for my pain, no compression fractures, just some degeneration from my osteoporosis. That would be absolutely lovely if that was the case, but I found it very hard to believe that 2 radiologists, a hospitalists, my primary care doctor, and a neurosurgeon were all wrong about the fractures in my thoracic spine at T11 and T12. I left the appointment upset, not because he told me that there were no fractures, but because I felt completely confused and defeated. I was really upset leaving the appointment, but taking a glass staining class that I received for Hanukkah from my dad and step mom was a good distraction until the appointment the next day.

I actually almost canceled my second opinion appointment because I was so frustrated from the first one. I'm glad I didn't (ha ha get it-- another back to back day of appointments). This doctor took 3-4x the amount of time with us in comparison to the other one. He went through my MRIs vertebrae by vertebrae, and from multiple angles. The doctor the day before only looked at one angle, and only looked at the vertebrae in question. The second doctor pulled up tons of dimensions of images form the MRI and immediately identified and showed us what the fractures at T11 and T12 looked like, and in addition, found a third fracture at T6. The fracture at T6 is considered to be an "acute" fracture, as it still has fluid around the fracture. Neither radiologist caught it, but even my dad and I were able to very clearly see it once the doctor scrolled through the MRI.

It may seem silly to be happy that there is a third compression fracture, and a more noticeable one, but in my mind, I felt so relieved that there was now a very clear explanation for my pain. It explains why my pain is so severe (because it's a newer fracture), where my pain is, and also gives us hope that once I am out of the "acute" phase, the pain will dissipate, which should take about 8-12 weeks. In the mean time, I am keeping up with heat, IV tylenol, a numbing gel, and I was able to start physical therapy today. He was hopeful that the new injected osteoporosis medication I am on should help prevent my osteoporosis from progressing, and that he has seen really fantastic results from this particular medication in other patients. For now, I have enough room between the fractures and my spinal cord. However, I have to be VERY careful to avoid future injury. He also believes that the scary leg spasms are electrolyte related, so hopefully supplementing those will prevent any future spasms.

Having a third fracture also adds more evidence to our existing concern that the steroids are absolutely destroying my body. My steroid dose has been decreasing over time, which the Rituxan has helped with, but they don't feel like it is decreasing fast enough. In fact, the Rituxan has been making a HUGE difference-- I have been having a lot fewer angioedema episodes, and my steroids are the lowest they have been in a while. However, to continue to decrease the steroids (and to decrease them faster), they decided to switch my Rituxan to a more "nuclear" one, which is more similar to the protocol they use to treat cancer. This means that I am going to have 2 8 hour infusions a week apart to completely nuke my immune system. The first one is this upcoming Friday. I'm a little nervous for the infusion, because of the side effects, risk of infusion reaction, and the consequences of being very immune compromised, but I know these are all risk that have to be taken if I want to avoid further rapid progression. Thankfully, CHLA was able to make an exception to allow me to do these infusions there in case there are adverse reactions or if the speed of the infusion needs to be slowed down.

Until Friday, I have been working on starting up a local chapter of Sick Chicks, which is a non-profit that is focused on empowerment for young ill and/or disabled women (Sick Chicks Website), tutoring, and baking. My mom also was in town for 24 hours, which was a blast-- we were able to go to some of my favorite restaurants, shop in a warehouse of a designer I like, and hang out. I'm looking forward to seeing the final result from the glass class I took last week. I'll make sure to post a picture once it has been fired in the kiln!