Since Brent's official diagnosis a few weeks ago, we have been in a bit of a whirlwind. We had to deal with all the emotions of his diagnosis and had to figure out, mainly financially, how to take the next steps. Hearing that Brent has MS is a lot like being told he had the tumor and that it was inoperable. We don't know how he is going to feel day to day, and we don't know what the future will hold, but we can only do our best! For anyone with a chronic illness, finances can be difficult. We are SO thankful that we have health insurance, even though it may not be ideal. Did you know that, for someone without insurance, medication for MS costs over $4,000 a MONTH. Our pharmacy benefit on our insurance will only cover up to $2,000 a YEAR. Luckily, there are special programs to help you with cost and help you get the medication you need. After a couple weeks of delay, Brent finally got his Copaxone shots this week. The nurse from Shared Solutions came during my lunch break on Thursday, and she taught us how to do the injections. Brent will have to give himself a shot every day from now on. He needed 7 sites on his body to rotate between. I know it comes as a shock, but Brent is a little on the thin side, so this was a tough task! There is an auto-inject he can use in some areas, but I will have to give him a manual shot a few times a week--lucky I did all that injection training in optometry school!
Brent did SUCH an amazing job learning how to do everything and I am just amazed at his positive attitude and optimism. For those who don't know a lot about MS, the medication
Brent is starting will hopefully reduce the number of new brain/spine
lesions on MRI, and the number of relapses. Only time will tell if he will respond
well to it. Please keep Brent in your thoughts and prayers as he starts this medicine. Pray that he has minimal side effects, and that he can tolerate the daily shots. I promise the next update will be about the house, as we have still managed to get a few things done here and there!
I will never forget how I felt when we had top neurosurgeons at Wake Forest and Duke look at Brent and say, "You have a tumor inside your spinal cord and it needs to come out sooner rather than later." They told us that the surgery is so risky that he would have to learn how to walk again afterward (with a walker for a while) and that he would have chronic pain and numbness for the rest of his life. We asked them both if they were sure this could not be MS or another neurological disease, and they both point-blank said "I am positive this is a tumor, there is no question." We had basically scheduled Brent's surgery for October. I had told work that I was going to have to take a week off (he would be in the hospital for 4 days) and that I would have to play my schedule by ear a little bit. But, before we let these Johns Hopkins trained surgeons cut into Brent, we were going to make pretty darn sure these guys were right and that this scary surgery was really the only option.
The feeling of amazement was only topped by the moment when I looked at the repeat MRI, 4 months after the first. The latest MRI (he had it on Thursday) showed that the lesion was in fact an extremely inflamed MS lesion. It is no longer inflamed and no longer shows up on a with-contrast MRI. Dr. Skeen, a neurologist at Duke (who we set up an appointment with on our own) explained to us that he, too, would have thought that the lesion was a tumor. HOW SCARY IS THAT. It has been hard to shake the feeling that Brent would have had an extremely risky and completely unnecessary surgery. If we had not insisted that we have a few more tests done, we would have taken the word of these talented surgeons and we would have put Brent's well being at risk for nothing.
Brent is obviously not in the clear, and he will now start a life-long process of figuring out how to deal with MS. The one thing that was a bit comforting about the surgery was that, when it was over, Brent was going to be how he was going to be. No wondering or waiting. MS will be a lot different. Hopefully he will be one of the lucky ones! We are so thankful that we pushed so hard, and we would appreciate continued prayers as Brent and I start to deal with a new reality.
