one more day of chemo…

    • Anonymous
      October 26, 2009 at 7:59 am

      a little update…
      so far, this is a piece of cake. is it pleasant 100% of the time? no. but so far nothing that has happened here could i call painful. there is mild discomfort that comes in many forms from the lines being connected all of the time, to being awakened every couple of hours for vitals, weight, etc., and i have had a mild headache while on on the chemo that they gives me meds for– so no biggie. today is my last day of chemo– yippee! they will wait a day and then re-infuse my stem cells on wednesday.

      so. i am just days into this and all of the feeling has returned to my feet. i get up in the middle of the night in my unfamiliar hospital room and am able to pivot around in the dark, while tethered to lines, barefooted… i am astounded.

      i have had no nausea or vomiting, no GI problems… it’s all really been anticlimactic. they have this stuff down to a fine tuned science.

      i am a little foggy with all the meds so this is about all i can muster for the moment. my writing feels very flat to me– let’s call it chemo writing 😉

    • Anonymous
      October 26, 2009 at 9:17 am

      Alice,
      I’m so happy for you to get the feeling back in your feet.
      You have done great and the big day you fought so hard
      for is only 2 days away.
      Thank you Alice for letting us follow you on this difficult journey.
      Shirley

    • Anonymous
      October 26, 2009 at 11:10 am

      [QUOTE=alice]a little update…
      so. i am just days into this and all of the feeling has returned to my feet. [/QUOTE]

      [FONT=”Century Gothic”][COLOR=”Sienna”][B]I am deliriously happy for you! [/B]

      I am sitting here at my computer grinning like a complete idiot. Oh, what a wonderful way to start my day!

      Thank you, Alice[/FONT][/COLOR]

    • Anonymous
      October 26, 2009 at 8:01 pm

      Yep, there are still miracles that occur in this world!
      What wonderful blessings there can be!
      Crossing my fingers, eyes, and legs [toes don’t work anymore?] for tomorrow!
      After tomorrow? That glass of optimism is gonna be totally FULL! And, IS gonna stay that way.
      Any relief, IS relief! Go for it good person!
      Hugs and hope always

    • Anonymous
      October 26, 2009 at 9:44 pm

      Yay Alice! I’m glad that you are tolerating the treatment without major discomfort. Still praying and sending positive energy. You don’t sound flat to me. You sound wonderful.
      Laurel

    • Anonymous
      October 27, 2009 at 11:35 am

      I can only imagine what the feeling would feel like in my feet again…to move my toes ? My right foot has become more “paralyzed” than the left…and the right has always been the good side.

      Absolutely awesome Alice ! Without a doubt, you are going to win your battle !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! 😀

      Stacey

    • KatyK
      October 27, 2009 at 7:02 pm

      All the support you are getting is powerful and your inner strength is remarkable. Thank you for sharing your success. You’ve made us all stronger and you are headed for the very best possible outcome!

    • Anonymous
      October 27, 2009 at 8:13 pm

      Went to your blog last night to read all your postings to date. One of my doctors was very interested in your procedure not just for CIDP. He’s a Pain Specialist/Phydiaitrist. Always asks when my IVIG will stop and I repeat almost every visit “Does MS go away??” I gave him a little info about what you’re having done/your doctor’s name/hospital.

      What you’re doing is phenomenal. I’m excited to see how you improve and hope you get back to old self again. If this could be an option for me then I will strongly look into it. I’m older than you but my life is arranged around IVIG and CIDP progression.I didn’t know about this being done and the success/improvements rates.Are the websites you did research into on your blog??

    • Anonymous
      October 27, 2009 at 11:39 pm

      Hiya Alice,
      I am so glad you’ve been having no side-effects.
      I got my chemo on 20OCT, and have eaten to date, only 2 meals of
      baked potatoes…that’s 6 days and only 2 meals–it’s all I can
      stomach. But I’ve been on the Cytoxan for 2 1/2 years, and they
      think it will eventually wipe out my bone marrow, as it kinda wipes
      me out now, every time I get it.

      I watch for your posts every day. I am so happy for you.
      Yes, a little jealous, as a couple years back, they told me
      I would definitely be accepted into the program, but then
      learned I had to pay for the whole thing out of my pocket, as
      it is not government-financed, and the insurance companies
      won’t cover experimental procedures–all that you went through,
      and found out for yourself. You are lucky to have caring
      parents that have paid out of their pockets, for your procedure.

      Now, we have to get Dr. Burt to do his write-ups of this,
      as I see his program ends March 2010. He’s got to push it
      to the Neuro Society, and get this out of the experimental
      stage, and get it listed as a “normal protocol of treatment”.
      How many of us would be fortunate enough to pay for this
      out of our pockets? Not many at all. His program has been
      recruiting for a few years–and you told me you were only
      the 11th person through it. And out of ten people, with
      only 2 people it didn’t work–I call that good odds, especially
      when you are at the end of the rope with nothing else to try.

      I hope the rest of the stem cell procedure goes well,
      and you continue with little side effects.
      Oh, how I wish you with a COMPLETE remission of this
      damn CIDP, and you’re back on the streets as a policewoman.

      All the best,
      Ken
      (KEDASO)