The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 330. Re: My next step???
    DebbieW Registered Users
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    Karen,

    Thanks for letting us know, my husband was in 1220A, do you face York Ave? Each having half a window is better, you have the bathroom, the other side has closets, a sink and supplies ... I am right

    At least you have all the paperwork in place so they can get an early start tomorrow. Try and sleep well

    Big hugs,

    Deb

  • 331. Re: My next step???
    Tex Registered Users
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    felursus wrote:

     

    I know Tex will be happy to hear that I didn't attempt to "escape" and go and sing the Dururfle "Requiem".

     

    Yay!  You're right!  Yay!  Yay!  Yay!

     

    I can't imagine they put AML patients in double rooms.  Cripes, between the two of you and visitors, there should be a plethora of germs for ya'll to choose from.  Say what you will about us unsophisticated yokels west of the seaboard, the last time I had a roommate in the hospital was when I was 17.  Just be careful so much as you can.

     

    Enjoy you're time in lockup.  Keep us posted on how you're doing.

     

    Blessings

  • 332. Re: My next step???
    felursus Registered Users
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    All staff wear masks & gloves at all times when in the room. Judging by what I can overhear, the roomie has some kind of lymphoma. The whole floor is an "L&L" unit. So far I've had 1 unit of blood and 1 of plts in anticipation of the PICC insertion.  Oh - had an EKG. Tallman came by this a.m. He still wants me to have an echo - as a baseline. They say the MUGA was perfect, so they really are going to do MEC.  RN just said they are going to give me more blood.  Slurp!!!!  I did manage the shower thing though, so I'm feeling more beneficent.

     

    There was a long gap while I was writing this:  they've now put in a triple- lumen PICC. Still awaiting x-ray.

     

    So that's the latest. I walked 1/2 mile - so I'm being "good".

  • 333. Re: My next step???
    willowbayfarm Registered Users
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    Thanks for the update!  I'm sorry you're spending the 4th this way, but it seems like no matter how you do it, this stuff interferes with something...mine was Thanksgiving.  Talk about taking the fun out of Turkey Day!

     

    Thinking of you and hoping everything goes boringly.

     

    - WBF

  • 334. Re: My next step???
    felursus Registered Users
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    Well, the course of trying to do the "right thing" seems never to run smoothly.  So they put in a triple-lumen PICC this afternoon, and I went off to x-ray to confirm positioning.  Turned out they had put it in too far and had to pull it back a bit.,  So the PICC lady returned and did her thing and changed the dressing.  Then I had to go back to x-ray to re-confirm.  By this time they had hooked me up to fluids again, and as I was fully dressed, I had to get my bra off - so I had it dangling from one arm.  We did the x-ray, and I noticed I was dripping a lot of blood - all over the x-ray room floor.  Quite a mess.  I got the tech to give me some pads, and he "drove" me back upstairs.  The RN put some compression over it, and it seemed ok - until I went to put on my PJs for the night and washed my forearm - only below the elbow.  It started bleeding again.  They are now giving me another unit of plts.  So no chemo today.  The timing is 6 hours plus time in between each drug, and they don't want to be changing stuff in the middle of the night.  I really WILL be at the nadir on my birthday - July 14th - exactly 10 days after they start.  WHAT a treat!

     

    I'll keep you guys updated. 

  • 335. Re: My next step???
    ARTB Registered Users
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    THEY certainly seem to be giving blood more easily than they used to; which is good, I guess,.  bleeding all over the floor is not good after a picc line though.

    I remember they put a line in on my right side first, and I did couple sessions of chemo, then they wanted to harvest my stem cells and freeze some for future use , but the cheap line they initially put in wasnt heavy duty enough so they  gave in and  put a better one in on left side of lower neck, but he was a trainee and it got stuck, on the curve going in, and he couldnt go furthur or pull back, so the watching regular doc took over and just had to force it out, pulling hard, and then re-do it , 2 internal cuts/? , they were concerned the arteries or whatever would cross flow, or whatever a professional would call it.  your going thru this now reminds me of a lot..

         Happy to hear your walking a lot.   It is clear that the survivors have so much in common

    ART

  • 336. Re: My next step???
    felursus Registered Users
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    Sorry you had to go through so much.  I don't let trainees touch me.  There was a team of 3 of them putting in the PICC.  Last time my plts weren't so low - they were around 100 to start out with.  This time, before the first unit of plts, they were 34.  I now have a pressure dressing over it.  We'll see how it does in the a.m. when the PICC team comes back to look at it.

     

    I'd better do the walking: I dish it out, I'd better set a good example.  I never did the other 7 laps, though.  All the time spent getting the PICC fixed and in x-ray and then getting it cleaned up again, and again took a toll.  I also had to do major laundry on the shirt I was wearing: fortunately, it's an old one, so I don't mind too much.

    Karen

  • 337. Re: My next step???
    alwayshopeful Registered Users
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    Thinking of you Karen and hoping and praying that your treatment goes well.  Please keep posting updates.

    Alwayshopeful

  • 338. Re: My next step???
    felursus Registered Users
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    Thanks very much, Alwayshopeful.  In a way it's kind of funny: when I got back to the floor after dripping blood all over the x-ray room floor, the tech told the nurse that I had pulled out the PICC.  Not so at all.  They did give me another unit of plts and changed the dressing and put thrombin all over it and replaced the pressure taping.  When we looked under it this morning, there was a little blood, but not much.  We are awaiting the PICC team to come and change the dressing yet again - my arm is nearly sterile - LOL -before they start chemo sometime this morning.  Meanwhile I'm totally exhausted: between nmy IV bag of fluid running out in the middle of the night - with all the concomittent bleeping, and my roommate's IV going off a couple of times (and she's too weak to ring for help - so that leaves it up to me), plus the "effects" of all the fluids, I'm now ready to go back to sleep for a good rest!  Rest in a hospital?  Ha!!!!!  Also it's a holiday, so the staffing is a bit off.  What jolly fun - as the Queen might say.   Alec is helping with the BBQ party they are having at our co-op and will then come down here late and stay over the night.    He'll need a sleeping pill too - to survive the moans of the roommie.

     

    Happy Fourth to you all.  Tex, I pray the fires continue to stay away from you. 

    Hugs,

    Karen

  • 339. Re: My next step???
    Tex Registered Users
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    I imagine the Queen might rather say, "F*** all this sh**!"

     

    But she would say it in such refined tones.

     

    Glad you're in and exercising.  I tell you, I can't even read about a PICC without flashing back on the two days' torture I suffered.  I really don't know how people maintain their sanity with those things in.  However, since it's your preference, I guess you're okay with it.  Should I be writing this?

     

    Keep us posted.  The fire's pretty much in a mop up phase so we're good on this one.  Now, if everyone will pay attention to the fireworks ban, we might make it through the week just fine.  Thanks for thinking about us while you're in the joint.  You haven't already changed your religion, have you?

     

    Blessings

  • 340. Re: My next step???
    felursus Registered Users
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    What religion?  I once thought of becoming Buddhist - until I discovered that they believe the male form is the "ideal", so one's last incarnation is ALWAYS in the male form.  I'm too much of a feminist to buy that one.  LOL

     

    I'm currently 2 poisons down and one to go (for today).  The Mixotantrone makes you pee green - a little late now for St. Patrick's day.  The Etoposide drops your BP, but I survived that (I used to have real low BP anyway).  They are looking for the ARA-C now.    I'm entertaining myself with the tennis match (Wimbledon - Murray vs. Ferrer).  I've walked 7 laps (1/2 mile already), had lunch (the special was black bean soup (sort-of SW effort), BBQ'd chicken and corn on the cob and cheesecake with strawberry sauce.  I'm muching away, because I figure in another day or so, I won't want to look at food.  Might as well enjoy while I can.  I've been soooo good: I swish with the bicarb rinse they gave me (salty with a fishy after-taste), brush and floss.  Got my Kiehl's lip balm out.  I guess there's not much more I can do.    Hubby is coming to spend the night, and I've got the sleeper chair in the room.  They are going to give me some more blood tonight.  Ah - they've now started the IDAC.  Three hours worth of it.  Then maybe I can go see what gives in recreation.  By the time I'm feeling worse, I won't be able to get there: I'm in the far corner from where the elevators are...

     

    Ok, so that's all the exciting news for today.  I'm happy to hear you are safe and sound.  Let's pray that there aren't too many idiots with fireworks (or guns) getting happy tonight,  I was talking about big fires with a friend who used to live in Oakland, CA and who was there during their huge fire back in the 90s.  That was started by some workers who had a BBQ and actually had firemen come to make sure their fire was out - but the firemen didn't check closely enough.  It skipped over an 8-lane highway and destroyed a lot of property.  People can be such idiots.  Perhaps if people are too dumb we should prevent them from having access to matches,

     

    Happy Fourth!

    Karen

  • 341. Re: My next step???
    Tex Registered Users
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    I was referring to people in prison becoming born again or adopting Islam almost as soon as they get in.  If the male form is perfect, then I want to know why our danglies ar just hanging out there for anyone to kick and why that puts us on the floor when we can take a pretty good punch.

     

    Didn't hear a firecracker last night.  Very good.

     

    Blessings

  • 342. Re: My next step???
    felursus Registered Users
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    I'm so relieved about the firecrackers.  I was thinking of you last night.  Here in NYC, it's illegal to have private firecrackers - but that doesn't stop the kids.  We get them in our local park (two blocks long and one block wide).  My husband came and stayed at the hosptial with me last night to avoid the local "noise effects". 

     

    I don't know about hospital conversions.  When I was in Presby I did have a couple of visits from a very nice Zen Buddhist priest.  We had nice discussions, but he certainly wasn't trying to convert me to anything.  I would have thrown the Rabbi out - if he had tried praying or anything with me.  I may be a real "JAP" (an ancestor was a founder of the first Ashkenazi synagogue in the US (Congregation Rodopf Shalom in Philadelphia), but I just don't deal well with it.  I went to the Ethical Culture Sunday School as a kid (Unitarianism for Jews - so they say).  LOL.  I'm fairly resistant to conversion to anything: I get nervous when I see too many people doing the same thing at the same time.  But that's just me.

     

    Most religions - except for Wicca - are male-oriented.  We could have a whole philosophical "discussion" as to why.

     

    Keep away from fires!  I'm halfway through Day 2.  They think I'm being :"difficult", because I threw them out of the room when they wanted to do vitals at 2 a.m.  I wake up enough just to pee, I don't need any more interruptions for nothing.  Also, I made them disconnect me so I could shower.  I had a lecture on tumor lysis syndrom from the Attending of the Month - and I enquired whether there were any studies that showed that a d/c for about 15 minutes really made any difference.  The answer is "no".

     

    Hugs,

    Karen

  • 343. Re: My next step???
    warrior Registered Users
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    Karen

    I have been busy pushing back the frontiers of science with no time  for much of any thing else... good luck with the chemo I hope it works ... and I hope your stay is boring

  • 344. Re: My next step???
    felursus Registered Users
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    Good luck with pushing the frontiers. Do tell us about it one of these days.  I'm trying my darnedest toake it uneventful. It's only Day 2, so we shall see. I'm fighting with the nurses (many of whom know me from when I worked here), as I'm not totally into their "routine". I've had to make "deals" so they don't wake me twice in the night to take vitals - always in the hour when I DON'T have to pee - this guaranteeing I don't sleep at all!  LOL. I'm quite capable of taking my own vitals. Ha, ha - as if they'd actually believe me.

     

    How is Cathy doing????  Keep us updated - and thanks for writing in.

     

    Hugs,

    Karen

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