I love this time of year. Evan is dressing up as one of his favorite WWE wrestler- Rey Mysterio. I think I am more excited about tonight than he is though. I can remember trick- or- treating through different neighborhoods with my Mom and brother and best friend each year. It was so much fun, and seems like only yesterday. My only stipulation about starting HiCy was it had to be after Halloween. I am hoping by this time next year I won't need the wheelchair to do the plat near my house. 3 years ago I was able to do it using a walking stick. I can remember how much my hand hurt from relying so much on it for support, but I still did it!
11 days to go!
I plan on taking some video this weekend of how I walk. This is completely against my pride and out of character, but if I had not seen Chris' before and after video I would not be a believer of HiCy. Plain and simple. I wouldn't feel right if I didn't share my complete story with those who are interested in the treatment. I hope to have results like Chris and make another MSer a believer too.
Also a big "Thank you" to Kathy for providing me with so much insight on this procedure. You have helped immensely to make this a smoother process. Thank you :)
Also to my entire family- So many people have called for updates and sent their love and prayers from day 1. This process has made me realize how lucky I am to have such a strong support network around me and that has given me the confidence to continue on in this journey. Thank you!
Friday, October 31, 2008
Saturday, October 25, 2008
Getting ready
So I have begun preparing for my 3 weeks away from home. I went out and bought a bunch of lounge clothes so I am comfy in the hospital. New outfits will surely help keep my spirits up during this process! I bought a wig! (Boy are they expensive... $800+ later, I am all set for that fright filled day. Insurance should reimburse me $350- so it's not too bad.) And thanks to my boyfriend- we set up the web cams today so I can keep in touch while I am gone. Everything is coming together nicely.
I am trying to think of it all before I go- hoping to avoid any unnecessary stress- and make the transition easier on everyone, especially Evan. So far, so good :)
17 days to go!
I am trying to think of it all before I go- hoping to avoid any unnecessary stress- and make the transition easier on everyone, especially Evan. So far, so good :)
17 days to go!
Wednesday, October 22, 2008
1st trip to Rush
So my Mom and I went to Rush October 16th and 17th to meet Dr. Balabanov (MS doctor) and Dr. Shammo (Oncologist). The 16th was a very long day. Between the flight and sitting around at the hotel for a couple of hours waiting for my appointment- I was extremely stiff. I knew a criteria for this treatment was that I needed to still be able to walk, and that showing up in a wheelchair probably wouldn't go over to well. There was alot of hesitency on Dr. Balabanov's part on whether or not I was mobile enough for the procedure. As he explained, they can measure improvement alot better when the patient is ambulatory, and it also helps to fight infection etc. I assured him I still walk, with assistance, but I was just very stiff right now. He kept wanting me to tell him how far I could walk on a normal day- and I was getting annoyed that he was doubting me. So finally, after a few minutes of stretching, I mustered up the energy to walk down the hallway and prove myself to him. Thankfully he was satisfied and we continued on with the visit. I did the 25 ft timed walk and some cognitive testing, and I was on my way. My Mom and I went to the 11 diner and had dinner and a few drinks that night. It was just what I needed after that visit!
On the 17th I met with Dr. Shammo to discuss all the potential side effects/ risks of the treatment. It was nothing that I did not already know, but it certaintly becomes more real when your sitting face to face with the doctor, rather than reading it on some website.
Obviously I am going to lose my hair. That is not something I am looking forward to- I am sure I will have a mini melt down when the time comes- but it will grow back and i'll get a pretty wig in the meantime.
Sterility/ Early Menopause- I am blessed to have an amazing 6 year old son. Dr. Shammo was concerned that being only 23 I may want to speak with a feritility specialist about freezing my eggs before treatment. I declined with the mindset that when I get well enough to consider having more children, I will use that energy to be a better Mom to the son I already have.
Leukemia/ Heart damage- These are the ones that really get me. Chemo is essentially a poison to the body. The risks are only a small percentage- but a very real percentage. I've decided to try not to think about it- whatever happens, happens.
So now we wait. I am meeting with the surgeon, Dr. Wool, on November 11th. On the 12th I will be admitted and have surgery to place the central line. After that, I will begin treatment. Thanks to Amy in Dr. Shammo's office, my Mom has an apartment to call "home" 1 1/2 blocks away from the hospital during our 3 week stay in Chicago.
That's all for now... there's alot of planning and shopping to do to get ready for this "vacation!"
On the 17th I met with Dr. Shammo to discuss all the potential side effects/ risks of the treatment. It was nothing that I did not already know, but it certaintly becomes more real when your sitting face to face with the doctor, rather than reading it on some website.
Obviously I am going to lose my hair. That is not something I am looking forward to- I am sure I will have a mini melt down when the time comes- but it will grow back and i'll get a pretty wig in the meantime.
Sterility/ Early Menopause- I am blessed to have an amazing 6 year old son. Dr. Shammo was concerned that being only 23 I may want to speak with a feritility specialist about freezing my eggs before treatment. I declined with the mindset that when I get well enough to consider having more children, I will use that energy to be a better Mom to the son I already have.
Leukemia/ Heart damage- These are the ones that really get me. Chemo is essentially a poison to the body. The risks are only a small percentage- but a very real percentage. I've decided to try not to think about it- whatever happens, happens.
So now we wait. I am meeting with the surgeon, Dr. Wool, on November 11th. On the 12th I will be admitted and have surgery to place the central line. After that, I will begin treatment. Thanks to Amy in Dr. Shammo's office, my Mom has an apartment to call "home" 1 1/2 blocks away from the hospital during our 3 week stay in Chicago.
That's all for now... there's alot of planning and shopping to do to get ready for this "vacation!"
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