This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
 
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Appointment Scheduled.....

Friday afternoon I got a call from Columbia Basin Hematology & Oncology to set up my appointment. The earliest they can get me in is October 4th (however, they did put me on the cancellation list). I will need to be there at 1:45 to have some testing done before the appointment at 2:45. I am not sure what kind of testing needs to be done but apparently the Oncologist reviewed my records and wants to do some testing before (s)he sees me. Assuming the Oncologist agrees to write the orders (I am sure there won't be a problem seeing how my Neurologist already recommended it) then I will start the Novantrone at Kadlec Hospital on the 5th or 6th.

I was hoping to get in earlier than this (as it is almost two weeks before I will have the treatment) but it turns out that this is perfect timing for me. My best friend, Val, is about to pop (due in November but both of her other kids were a month early and she has already had some contractions). Her babyshower is on the 1st and I really wanted to feel okay so that I could go. I know that if I was to have the chemo next week I would probably not feel good and would end up having to miss it. Also Justin may be able to get some time off and is planning to come for a visit on the 6th. If my chemo is on the 5th or 6th then this ends up working out great because he can help run Nate around to his football practices and game. He can help keep things running as normal as possible for Nate, which would be nice considering how hard it is on him when I don't feel good. He worries more than anyone I have ever met and he is only 11....Justin here will be a great distraction to my starting Novantrone!

Of course there is the part of me that wants to just get it done and over with so hopefully I can start to feel better (after the typical chemo side effects....for a couple days) but this just may be a blessing in disguise. I have been very tired lately and today at Nate's football game (it was 78`) I seriously needed my cooling vest (It arrived in the mail yesterday, yay!) I ended up with a headache and by time we left I was very weak. Last weekend it was cold and windy at the game so this morning when we left it was a bit windy and not too warm so I did not take it. I did take with me the head cover and cool tie...so that helped. I guess the lesson here is that I just need to take it with me anyway, that way if it gets warm I am prepared. I also have not been sleeping really well....not sure what that is all about. I get sleep....it is just not a restful sleep. You add that with all of my typical symptoms lately and you have a mixture of great fun (yes I am being sarcastic....I can't wait to feel better....bring on the Novantrone!) Hopefully tonight I can get some decent sleep and maybe a nap tomorrow afternoon would also help!

Anyway, I hope you are all having a great weekend. Take care!
Speaking of sleep....I think it is about time I go to bed. :)

2 comments:

baitulos@aol.com said...

Glad to hear things are progressing for you re: Novantrone. I do hope this drug brings you some relief! And fortunately, Washington weather "appears" to be cooling as well...LOL

Linda D. in Seattle

Jaime said...

Thanks Linda!

I am trying to only have positive thoughts when it comes to how this drug will work. I have heard great things about it and there is lots of research out there showing it works.....so only happy thoughts here!

As far as the weather is concerned...in my opinion it is not cooling off fast enough. LOL The high today in supposed to be like 82` or something and tomorrow even warmer. Anything over about 70` and my MS acts up (if I go outside). I know there is no perfect place to be but if only I could find a place that was 60-70` year round...now that would be nice! Keep dreaming right? For now it appears the cooling vest is about to be my best friend.

I hope you are doing well and the Tysabri is working for you. Take care of yourself and have a nice relaxing Sunday!

Jaime


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my story...my life with MS (among other things).

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