I could have done this blog entry last night but to be honest it would have been a lot of raw emotions and I really just wanted to not focus on that dr call.
Dr B called before I got home to take Steve to the IV thing. I knew when I stepped in the door that something was up.
The MRI scan shows that Steve has two active lesions on each side of his brain and one active lesion on his neck/spinal cord. The dr emphasized these were new and active. And by active that means they are not done doing whatever fun things they are going to do. But it puts a medical term to what we've seen going on. Steve's old symptoms from nearly two years ago...extreme tiredness, achy legs, and speech issue when tired (with the speech issue now magnified to any time he's the least bit tired) and his new symptoms of tingling hands/feet/back/chest/stomach, stiff hands and toes, gait/balance issue. What is interesting is Steve nailed the problem before the scan came back. Said he just "felt" he knew what it was.
So where we stand now is he will be monitored, have blood work to see if his body can handle the meds she is thinking of moving him to, new meds possibly, possible steroid push again. Love how with MS the most repeated word is possible. It may possibly do this, we may possibly have to do this. No wonder drug companies consider so many MS drugs as new age or specialty because there is no clue on whether they really do anything.
So to say it was a rough evening is an understatement. We went and did the IV thing (which went well) and we kept the attitude normal around here the best we could for Kaya's sake. We answered her questions honestly. In her mind Daddy has a spot on his brain that is eating at something. Which, is scarily close. We explained to her that it may mean a few dr appts and finding out what works and that she didn't have to worry. That it was ok to be upset and scared but we'd answer everything the best we could. She was satisfied with the talk and we left it at that.
Steve's next biggest fear is another MRI scan due to the cost. 900 a pop isn't chump change and we just had one this week. Another fear is that we fought to get into the copay program for his current shots...will our insurance cover the new medicine and will there be a copay program out there? How long will he fight side effects? Will it be a weekly shot, daily shot or a pill?
So a lot of questions on our end and worries but they'll be answered soon enough.
We've had lots of friends,coworkers, and family rally around us. That means more than anything.
My entry last night would have been crying inside, fear, and anger at this dreaded disease and worry for my husband. Today....after an extra hour of sleep and laughing at Steve's steroid energy lol I can see a bit clearer. Is there still tears inside some? Yep. Is there still worry for my hubby, fear of what can happen and money worries. Yep. But inside I know we can beat this and it's just a rough patch. The scariest thing is we won't know what all the lesion can do till it's done doing it's thing. Then we have to hope Steve's body repairs the spot and tries to heal itself.
So focusing on this deal but not letting it bog us down. Just another bump in the road on the way to the top of the mountain :) :)
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