Today, I am frustrated. My eyes are getting weak, and my speech has already began to fade. Yeppers, late last week, and right on schedule, the dang MG symptoms started to surface. Was this expected? Of course. Did I hope it wouldn't happen? YOU BET!
I didn't really get my hopes up for a 1-shot miracle cure from the first dose of Rituxan, but by golly, this gal was holding out a little hope. What's next? What do you do? How do you avoid choking on Thanksgiving Turkey???? ...now you understand my priority! :)
Considering my appetite these days (thanks steroids!), I want to eat all the turkey I can! The wonderful team of nurses are working with me to do a plasmapheresis treatment tomorrow, so that we get this in before the 2nd Rituxan treatment on Tuesday. Oh the juggling act! Thank God for these amazing people, who know me and want to help.
Sunday, November 20, 2011
Tuesday, November 15, 2011
One down, three to go.
That didn't hurt at all! Day 1 of Rituxan treatment, and all is well. What did I expect? I dont know, nothing, everything, something...but calm were the winds. It has been roughly a year since we began talks about this drug, for the Myasthenia Gravis, and finally the day arrives.
I've had mixed emotions about it all really. Super glad that we are able to try this drug, especially after hearing so many positive reviews from other Myasthenics who have had success. A bit nervous that we will find a dead end on this road as well. It feels like a routine anymore, that we try something new, get excited about possible results, only to learn that the results are minimal, if at all present. Hopeful that this treatment plan will teach us something new and that this may be a great step away from the only thing that has worked - plasmapheresis. Scared about the risk for other issues, although those risks are small. Curious, I am a walking science project, and I'm excited to see how the MG and MS will respond to a 1-shot wonder drug. Really two birds with one stone? Skeptic, see 'nervous' above. Trusting that no matter what comes from this experience, that good will shine through, if not for our walk, for the journey someone else is on.
Today, I sat amongst people taking drugs to save their lives. Our infusion was simply intended to try and improve whats already good. I have no complaints. The range of emotions is wild and a bit exhausting, but I'm blessed to experience each and every one of these crazy emotions, because it means I can still feel.
Treatment 1 of 4 is in the books. We'll tackle this again next week, for treatment #2. I expect next week will bring on other emotions and curiosities. In the mean time, I'm just sip my sweet tea.
I've had mixed emotions about it all really. Super glad that we are able to try this drug, especially after hearing so many positive reviews from other Myasthenics who have had success. A bit nervous that we will find a dead end on this road as well. It feels like a routine anymore, that we try something new, get excited about possible results, only to learn that the results are minimal, if at all present. Hopeful that this treatment plan will teach us something new and that this may be a great step away from the only thing that has worked - plasmapheresis. Scared about the risk for other issues, although those risks are small. Curious, I am a walking science project, and I'm excited to see how the MG and MS will respond to a 1-shot wonder drug. Really two birds with one stone? Skeptic, see 'nervous' above. Trusting that no matter what comes from this experience, that good will shine through, if not for our walk, for the journey someone else is on.
Today, I sat amongst people taking drugs to save their lives. Our infusion was simply intended to try and improve whats already good. I have no complaints. The range of emotions is wild and a bit exhausting, but I'm blessed to experience each and every one of these crazy emotions, because it means I can still feel.
Treatment 1 of 4 is in the books. We'll tackle this again next week, for treatment #2. I expect next week will bring on other emotions and curiosities. In the mean time, I'm just sip my sweet tea.
Friday, November 11, 2011
Not Much
Treatment six of six...will this really be the last one? I'm afraid to get my hopes up, but this is the theory. Today is the last of the scheduled pheresis treatments and Tuesday we begin the new drug, Rituxan. Lots of positive feedback on this drug, from those like me. Yep, there are others out there, like me. Myasthenics who do not respond to typical treatments. I'll admit, my mind expects we are a hardy bunch, who must be stubborn as all get out!
I dont have much to say today...maybe thats why I'm willing to type. I do get a little sad to think about leaving my nurses and doctors again...this is my family too. Suppose we could find better reasons to gather.
I dont have much to say today...maybe thats why I'm willing to type. I do get a little sad to think about leaving my nurses and doctors again...this is my family too. Suppose we could find better reasons to gather.
Saturday, November 5, 2011
Ready, Set, Rituxan is a GO!
Rally the Rituxan!
We have the green light. We're going to try Rituxan. I'm still learning how to spell that word. This past week and this coming week, we are pheresing (is that word?) my body, a total of six times. Three down, three to go! Why? We do this to make my body as strong as possible, and then try to avoid plasmapheresis, after the initial Rituxan treatment. Why? So as to avoid removing the drug from my body, before it has time to do what it needs to. Its debatable if it happens, but why risk it, right? Why? Because I said so!
The Rituxan will be administered once a week, over four weeks. This seems to be the protocol used for other conditions/diseases, so it is also being applied to treatment/management/fight against Myasthenia Gravis. Oh yeah, did I mention the Rituxan is intended to help manage the Multiple Sclerosis as well? Bonus Plan!! Two diseases, 1 stone!
So its time...time to try something new and see what may be in store for us. The hope and goal is after the initial weeks of Rituxan, that my body will not need plasmapheresis. Considering I don't last much more than a week or so now, between treatments, I feel we'll know quickly if the Rituxan is helpful. By quickly, I mean after the 2nd or 3rd week of treatment.
Ah heck, who knows....just send up a prayer and buckle in. We're ready to kick start this new ride!
We have the green light. We're going to try Rituxan. I'm still learning how to spell that word. This past week and this coming week, we are pheresing (is that word?) my body, a total of six times. Three down, three to go! Why? We do this to make my body as strong as possible, and then try to avoid plasmapheresis, after the initial Rituxan treatment. Why? So as to avoid removing the drug from my body, before it has time to do what it needs to. Its debatable if it happens, but why risk it, right? Why? Because I said so!
The Rituxan will be administered once a week, over four weeks. This seems to be the protocol used for other conditions/diseases, so it is also being applied to treatment/management/fight against Myasthenia Gravis. Oh yeah, did I mention the Rituxan is intended to help manage the Multiple Sclerosis as well? Bonus Plan!! Two diseases, 1 stone!
So its time...time to try something new and see what may be in store for us. The hope and goal is after the initial weeks of Rituxan, that my body will not need plasmapheresis. Considering I don't last much more than a week or so now, between treatments, I feel we'll know quickly if the Rituxan is helpful. By quickly, I mean after the 2nd or 3rd week of treatment.
Ah heck, who knows....just send up a prayer and buckle in. We're ready to kick start this new ride!
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