Alice–please, Please, Please Be Careful.

    • Anonymous
      October 8, 2009 at 5:56 pm

      Hiya kiddo,
      I know you are on a “high” right now, as things have been basically going okay for you up to this point.
      I try to read your posts daily, though sometimes it’s a couple of days.
      I talk about you and Sophie with Frank here–I keep him up on what’s going on with you.
      What we were both surprised at, was that you flew home to San Francisco.
      I know you were a little bit homesick.
      But this ia taking great chances.
      My monthly dose of Cytoxan is 2000mg, which they consider the maximum dose. They constantly watch my white blood count. If the WBC goes below 3, then they lower the next dose to 1800mg.
      Once in a while it does go below 3. And when it did one time, I got the shingles. They told me that anyone who has had chicken pox as a kid, it lays dormant in your body. When my immune system is compromised, and my WBC is too low, my body cannot fight off anything, and I got shingles.
      I am told to stay away from crowds, and not have friends or relatives who have a cold or flu, to not visit me. I don’t go out much anymore, half because of that, and half because of the difficulties with the CIDP.

      Alice–you received a dose of Cytoxan almost TWICE as much as I get, with the aim to totally wipe out your current immune system, and give it a fresh new start. I imagine your WBC must be below 1.
      It will now be VERY easy for you to pick up a cold/flu, ESPECIALLY if your in a confined environment, such as an airplane. All it takes is one or two people on the plane, to be near you, who have a cold or flu, and you may be susceptible to whatever bug they may have. And your body won’t be able to fight it off, thus it may develop into something more severe, such as pneumonia or worse. Your body cannot fight anything off right now.
      Frank couldn’t understand why you doctor would let you go home on a plane right now. Knock-on-wood, since I have not been going out much anymore, I have not had a cold or flu in about 5 years. But my doctors are all waiting for me to get a bad flu, as my Pulmonologist has told me that is what is going to do me in.
      Since things are going pretty well for you so far, I DON’T want you to get sick from a non-treatment ailment. Your body is in a very immune system weakened state. This is playing with danger, flying on a plane. That’s how flus spread throughout regions–by people who are sick flying from their home to another part of the country, or to another country.

      PLEASE do us a favor– at least wear a face mask while you are on the plane, and in the airports.
      And tell your family and friends, that if they’re the SLIGHTEST bit sick, to not get near you–they will understand.
      And, you’re Italian-American…everyone loves to hug or kiss when they meet friends or family, (I know that, as Frank is Sicilian). DON’T, I REPEAT, DON’T DO THAT. Keep your kisses just between you and Sophie. Everyone will definitely understand why.

      We care for you deeply, as does most of the people here on the forum. We are all rooting for you. We DON’T want you to get sick.
      Also, you mentioned you were feeling a little drained. I feel drained from the Cytoxan, the first week or two after it is administered. You got almost double my dose, so feeling drained is probably from the high dose of the Cytoxan.

      You take care, love, and stay well.
      All the best,
      (Ken and Frank)

    • Anonymous
      October 8, 2009 at 11:57 pm

      With all the bugs going around I am constantly washing my hands.

      Like everyone else I don’t want to get any bugs that will make me feel worse than I already feel.

      I always carry a small bottle of the alcohol based hand cleaner in my purse.

      I use it often while I am out. It is amazing how many times you touch surfaces or open doors etc. Who knows what might be lurking on those surfaces! Some grocery stores now have wipes so you can wipe down the handle of your shopping buggy.

      Rhonda from Canada

    • Anonymous
      October 9, 2009 at 9:52 am

      kedasso, homeagain and all– thank you so much for your concern and suggestions…

      ok… the reason they let me come home was because my blood returned to “normal levels” in terms of red, white and platelets. i don’t know if that is because i did the neupogen week– initiates white blood cells to be produced, etc. but because my levels returned to normal, their response when we asked if we could return home for this time was, “you are no more likely to get sick than sophie at this point as your blood is now normal.” they said i was not neupogenic… meaning, i am not at risk for infection, at least not more than anyone else. so i hope that puts your mind at ease ken and frank 😮

      and homeagain– you wondered about my silence in the last days. yes, it’s true. one reason is because i have had an unusually large amount of visitors due to my b’day. thanks again for the b’day wishes. but also because i have had an increase in my pain.

      now, if you recall, i had a tremendous boost after the chemo. for the week following chemo, i had strength and stamina like never before in this illness. it was amazing and prompted me to write the post entitled, “cytoxan is amazing.” after that week though, i began 5 days of mega doses of neupogen shots. (everything about my protocol is “mega” 😉 ) and… of course i had the stem cell harvest day itself. it was during and after all of that, not the chemo, that knocked me on my butt. the neupogen caused me back pain and a general feeling of not being well. and the harvest, i later learned, is quite demanding on the body. so i feel i am still recovering from all of that…

      in fact– my neuropathy feels it’s been messed with. hard to explain– but i have a significant increase in pain, mostly center back down. hence, it makes me more tired than usual– you know how pain is exhausting onto itself… however, something else strange is going on– i am now able to get up on my toes! not much, and not for very long– but i can! so what the heck is happening? i have no additional numbness– really i have just an increase in pain. additionally, do you remember when i spoke of secondary processes in a recent post– those things you feel with cidp that cannot be medically proven but that we know in our hearts and from within the intimacy of knowing our own bodies that– there are certainly “other” things at work to make us feel unwell… i also spoke of how after the chemo, all of those ailments disappeared– well, they are back along with a particularly acute onset of pain. in summation:cool: , somethings are better and some are not– at this juncture. i’m also getting a lot of sharp zingers in my feet and toes– now for me, zingers have always meant heeling, which would correspond with my new ability to get up onto my toes.

      so, who the heck knows… i’m just thrilled to be home in our beautiful weather, on a warm sunny deck, and with my velcro doggies. we have about a quarter acre property and we typically spend an enormous amount of time outside on our deck or gardening, etc. we feel a little cooped up in the relatively small chicago apartment we rent. and, it’s not like i can take advantage of the wonderful city of chicago– just not well enough, you know…

      so that’s the dealio:cool: i hope everyone is doing well and i will certainly post more as i begin to feel better, which i am, with each passing day…


    • Anonymous
      October 9, 2009 at 1:03 pm

      [FONT=”Comic Sans MS”][SIZE=”2″][COLOR=”Sienna”]Thank you for posting, Alice. Yes, along with Ken and Frank, it worried me that you were traveling, in the first place, and going home where friends and family await to greet you with huge hugs, in the second place.

      We should’ve known, I suppose, that you and Sophie wouldn’t move a muscle out of Chicago if the docs had not said it was okay.

      Awfully glad you’re okay, even though some of the lousy symptoms are back.