i keep waiting for nausea…

    • Anonymous
      September 24, 2009 at 8:46 am

      gosh, so far so good… as you know, i had my 3,400 mg blast of chemo on monday. nothing. ok, i am sleeping a bit more but i have absolutely no nausea or any other symptoms for that matter. i keep fearing it will come in the next days as they say it can be a delayed reaction. we’ll see.

      yesterday, sophie and i walked along lake michigan and then through downtown. before we realized it, we had walked for 2 hours! that’s a lot for me. then i went to sleep at 5, and woke up at 5 today ๐Ÿ˜‰ think i was tired?

      another point. i actually feel my cidp is better since that chemo infusion. i am still evaluating it so it’s difficult to explain yet. but… i feel my cidp is less. i’ll continue to observe this and explain it better as i understand it more.

      so saturday i begin my growth factor shots. i’ll give myself these shots in the tummy for 5 days and then be harvested on the 5th day. harvested, as in stem cells ๐Ÿ˜‰ other than frequent labs, that’s the next real thing on the agenda.

      thanks again for all your kind words and thoughts.

    • Anonymous
      September 24, 2009 at 10:28 am

      Whoo hoo! Thats great Alice, I hope it stays that way and you can kick this disease in the butt. Maybe there’s hope for us all. I’ll start saving my money now for when it’s my turn, keep us posted and stay strong!


    • September 24, 2009 at 11:00 am

      Wow a two hour walk after Chemo, that is very impressive. Following every post you make with eager anticipation.
      You are quite the pioneer, I’m praying for you!

      Keep posting every chance you get.

    • Anonymous
      September 24, 2009 at 12:07 pm

      so… today i felt a tiny bit more drained and only managed about a 40 minute walk– went to trader joes and hung onto the cart as we shopped. i was doing fine, a bit tired, but managing– UNTIL — and i hope this doesn’t offend anyone — a robust woman, with very big hair, began trailing me at the grocery store, upwind. this alone was manageable… but she must have bathed in the world’s worst perfume just prior to her shopping experience. sophie tells me she recognized the scent as an awful smelling perfume called “angel.”

      well… it went right to my head, made me dizzy and gave me a headache. i actually felt light headed. i have come to the conclusion that chemotherapy is easier on the body than bad perfume… phew!

    • Anonymous
      September 24, 2009 at 6:34 pm

      [SIZE=”2″][FONT=”Georgia”][COLOR=”Sienna”]join the club, Alice … it may be your treatment causing the perfume problem, but for me it is, and always has been, anything Avon and anything vanilla. I made a bit of a spectacle of myself at a Boy Scout show, had to crouch down and hang onto the wall just to keep from fainting dead away. From then on, if I caught a strong scent close by, I’d move — quickly. Come to think of it, that likely caused a bit of a scene a few times itself. C’est la Vie …

      I am so hopeful for you, Alice. You are very fortunate to have Sophie with you. Much good luck and good wishes to you both.[/COLOR][/FONT][/SIZE]

      A P.S. here: I just googled Angel and look what I found:[/COLOR]
      Product Description
      ANGEL perfume was designed by THIERRY MUGLER in 1993. Its fragrant nature explores essences of honey, chocolate, and caramel and is blended with notes of [B][U]vanilla[/U][/B], patchouli, and sandalwood

    • Anonymous
      September 24, 2009 at 7:02 pm

      I’ve always been scent sensitive and I TRULY know what you mean!
      I used to love lavender scented stuff, not only because it well, smelled nice’ but I understand from an aromatherapy perspective that it has healing properties. Finding good lavender soaps etc is like finding hens’ teeth these days.
      In colonial times, dried lavender was used as a moth repellent in their woolens. Go figure! I’ve always liked it because it smells CLEAN.
      Some folks [and I’ve learned this from my BC experiences?] don’t get any reactions to chemo, others well? All sort of things happen. Do you know which chemo you are on? Knowing what it might do to you …before you know it’s being DONE is a good thing in the way of ‘forewarned is fore-armed’ aspect of things happening. AND IF they happen? Could be subtle or hit you like a sledgehammer. I truly hope nothing ‘hits’ you.
      Not to mention? You ARE in a hospital… There are all these really sick people there! I myself don’t just hate having to go to one? I loathe it! I’ve been all but in ‘isolation’, as I’ve soo many immune issues the docs simply don’t know what to do with me! I kind of find it sort of funny really. It’s as IF I’ve something ‘contageous’. Obviously, many of the ‘profession’ have not been educated enough?
      Nothing is more comfy than a hospital bed, in a dry environment etc… And the TV when you can’t sleep? BAH! TV anywhere at 4AM is the pits. What’s scary is when the infomercials sound good. Keep that in mind, please!
      Heaps of heart from me to you….use prudently and repay w/o interest at a future date…DEAL?

    • September 24, 2009 at 11:54 pm

      Be careful on those shopping trips, Alice!
      Maybe you could find a surgical mask at the hospital and carry it with you just in case.
      All in all it sounds like positive energy is surging through and healing you!

    • Anonymous
      September 25, 2009 at 1:31 am

      In my 13 treatments of cytoxan I was never nauseated once, but I was premedicated with Zofran & solumedrol. After my treatments, I remember being wheeled into the house, right up to the kitchen table for dinner. My mother was living with us at the time (took care of me while husband worked during the day), & she would have dinner waiting. Never missed a meal in 9 months of chemo. Fortunately I was thin then, that was before all of the steroid pounds came on! I doubt you will experience any nausea, but do be careful not to overdo it physically, that still is poison they are putting into your body…

    • Anonymous
      September 25, 2009 at 6:13 am

      @rocky36, i laughed so hard when i read your post! yes, i too have always hated strong perfume smells. i remember as a kid getting a kind of face or forehead headache whenever i would get assaulted by usually a bouffanted women that sprayed way too much of it all over herself. if the scent is light, clean, crisp and fresh, i don’t mind– but one’s like angel ๐Ÿ˜‰ — thanks for googling it ๐Ÿ˜‰ are so hideous… how can the person herself stand it?! i think there was also a combo of that smell along with tons of hairspray… it was atrocious ๐Ÿ˜‰ funny thing, the nurse called me yesterday afternoon after the perfume experience (or exposure, as in hazmat) and asked me how i was doing. i told her that i was certain that bad perfume was more toxic to the body than chemo–lol.

      now that i am chemo’d, i am even more sensitive to scents and smells of all kind. strangely, it works both ways. sophie prepared a delicious dinner– angel hair pasta with fresh tomatoes, toasted pine nuts, garlic and olive oil, and sauteed spinach on the side, with garlic of course… it was extra wonderful and i do believe that one of the reasons was because my sense of smell is particularly heightened… eating it felt like a drug i was addicted to– it felt so right for my body– hard to explain.

      anyway, suffice it to say that you and i have officially bonded on the bad scent arena ๐Ÿ˜‰

      , yes, i am very careful. i’m not yet wearing masks but i am careful to not touch my face with my hands until i can properly wash them. its a natural habit for me anyway as i’ve been a cop for over 11 years and, as you can imagine, everything from the people we handle to the police car itself is filthy. for years i would drive back to the station with the only goal of washing my hands. plus, i don’t think i’m terribly nutrapenic yet– but i have labs today and will know better how my blood levels are. so thank you, very good advise ๐Ÿ˜‰

      @pam h, hopefully i will be much like you in the nausea department. i have had NO nausea as of yet. when the nurse called yesterday, i asked her if i am to expect a delayed reaction and become sick in the days to come. she told me that if i haven’t felt sick yet, i am most likely not going to– great! my body seems to handle it well. phew. and i too still have an appetite.

      @homeagain, i will write you a private message in response to yours. thank you for your kind words.

      on a more general note– i begin neupogen shots on saturday. in addition to the neupogen, i will be taking an antibiotic and an anti-fungal. neupogen is a growth factor that stimulates WBC’s from the marrow to the blood stream, making the stem cell harvest easier. i’ll take these shots for 5 days and on the 5th day, i will be harvested. i am of course hoping that that week won’t be rough in terms of side effects… please continue all of your wonderful positive thoughts and energy– it helps more than i can express. thank you all. alice ๐Ÿ˜‰

    • Anonymous
      September 25, 2009 at 10:46 am

      Your explanation of bad perfume and boufonted women…sound like women I work with !
      YUCK. There is one that wears the perfume to mask her backside odor.
      Nice, eh ? It doesnt mask, it just mixes.

      I am so happy everything is going well. You make it all seem easy…tho, I know, it’s not.

      Hoping to see you someday at a symposium…what an awesome thing that would be for you to stand up and tell your success story…in person !

      hugs and prayers..


    • Anonymous
      September 25, 2009 at 11:48 am


      I’m sure the staff at Northwestern has advised you of this, but the primary side effect you can expect from Neupogen is a deep pain/ache in the large bones, like your femur, etc. This is caused as the marrow in your large bones is super activated producing white blood cells. I received probably 15 Neupogen shots for neutropenia, and experienced this effect each time. It was not severe pain, but definitely there.

    • Anonymous
      September 25, 2009 at 1:33 pm

      LOL!!! That is sooo funny. I swear you are right. Some days I feel like I can go all day and the second you encounter one of those creatures of serious over dosage you feel like you might fall down like a ton of bricks…How can they not smell it to???

    • Anonymous
      September 25, 2009 at 4:15 pm

      @stacey– i’m rolling on the floor laughing… and believe me, that’s dangerous for me ๐Ÿ˜‰

      @bilt– thanks for the info– yeah, i have heard this… i’m kind of dreading it.

    • Anonymous
      September 25, 2009 at 7:24 pm

      Hi Alice,

      I’m so glad you are doing well. ร have always been sensitive to perfume odours too. When my daughter was a teenager, whenever we were in a department store and would walk past a perfume counter – she just had to try them all on! Needless to say – I would get an instant headache/lightheadedness. For as long as I can remember my Mum has always plastered perfume on – though I don’t think her sense of smell is that good – That must be her reason as when I used to complain, she’d say, ‘but I can’t smell it!’
      Your dinner the other night cooked by Sophie sounded delicious! I think I’ll try that recipe ๐Ÿ™‚
      Anyway, I hope everything keeps on going well.
      Sending positive thoughts across the pond.