The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 300. Re: My next step???
    felursus Registered Users
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    Thanks. When is his 2-year mark?  TWO BMBs in one months except in an emergency is obviously excessive!  Have a great summer in the meantime.

    Hugs,

    Karen

  • 301. Re: My next step???
    DebbieW Registered Users
    Currently Being Moderated

    2 year mark is 10/1/12, but appointment is 9/24/12 for the next BMB and evaluation. With the predicted weather tomorrow, he now can take a dip, but I'm having an ingrown toenail clipped tomorrow, so our first swim together in two years will wait a few days ... Minor things in the big picture!

     

    The library at MSK had some decent relaxation tapes which came in handy when those books or even a DVD became too challenging and lenghty. They kept him waiting an extra day or two after admission for induction chemo before placing the Hickman which was a little annoying. When being admitted for transplant they scheduled the Hickman insertion as an outpatient with admission later that day which worked out well without any delays.

     

    Enjoy this weekend as much as you can and keep moving forward with those laps a few times a day, soon you'll be on the other side of this month

     

    Hugs,

    Deb

  • 302. Re: My next step???
    felursus Registered Users
    Currently Being Moderated

    Remember, I'm the one who MAKES people do their laps.  They say that one circuit of Memorial is 500 feet, so at Presby, I counted out the 18 inch floor tiles and made a 500 foot route.  After chemo finished, they took away my IV pole, and I had nothing to hold on to: at that point they started screaming at me for coming out of the room, because my plts were low.  (One day I decided to hit the linen cart and change my own bed.)  Also, the IV poles at other hospitals don't have those nice, round "handles" that the ones at MSK do.  I hope they DON'T put in a Hickman: I'd prefer a PICC.  I can live with that.  No one has said anything to me.  What happened at Presby was the day of admission nothing much happened except interviews with the nurses.  The next a.m. they did a BMB.  While the MDs were doing that, the PICC team (RNs) showed up, but obviously couldn't do anything then.  I requested some "happy pills" before the PICC insertion (I felt "abused" enough), and no one wrote for it - despite my MD having told his Fellow to do so in my presence.  Part of the issue was that the PICC RNs said they'd be back at 2, but they actually turned up at 12.  I refused.  Then they got a PA to come in.  She said she'd write an order - but somehow it didn't turn up in the computer.  Eventually, it all got sorted out, and I think the PICC team finally did their stuff at about 3.  Then I had to go for an x-ray to make sure it was properly positioned.  By the time I got back to the unit, it was dinner time and then change of shift.  They didn't start chemo until after 10 p.m., and I recall the Cytarabine starting at about 10:25.  So that's how I was getting a "shower break" later and later (or earlier and earlier) every day - until my MD gave me a 6-hour "vacation" so I could get on a "day schedule".  I'm going back on Thurs for more tests, and I'll ask about the line then.  At least with a PICC you can cover it up and shower.  They even make special PICC line covers that are supposed to be ok for swimming (not that I have that much confidence in them for that - although they are just fine for showers).  I guess if I'd had the chance to go near a private pool, I'd have put the PICC cover on and gone wading.  It didn't happen though. 

     

    I hope your foot surgery goes well, and you and your husband get to enjoy some good swims together this summer.

    Hugs,

    Karen

  • 303. Re: My next step???
    DebbieW Registered Users
    Currently Being Moderated

    I have not had PICC and I have not had a Hickman, but my husband had two Hickman's placed without any problems and showered everyday with those plastic sheets I still have in my upstairs closet, they were both removed before discharge. The annoying part about waiting, besides waiting , for a placement before induction was that they wanted him to fast. When I mentioned this fasting idea to our daughter she thought it was total BS, she is currently a first year resident and said they place those frequently in the ER without any fasting. I have no idea what is best, I do remember them saying that the one type of chemo they could do without a central line, the other required a larger vein, which is why it was delayed. Seems they have people placing these lines all day, outpatient trumps inpatient, hence the outpatient appointment before transplant admission. The one area I think MSK is deficient in is communication, maybe they know the next step, but we want to know as well. Sometimes there were very good (we expected your fever yesterday) other times they were lacking, so checking on Thursday is a good idea.

     

    I was joking about the laps, you know this better than most !!! My husband had it worked out that so many laps per day x so many times per day equaled x miles, thankfully my daughter inherited his math abilities and not mine

     

    Thanks, the foot stuff is very minor, just a bit annoying after two years and with the weather prediction tomorrow. I can always sit with a summer drink and watch my husband and son play volleyball in the water ... really not so bad, actually pretty damn good, in fact Very good, after the last couple years.  Check your PM.

     

    Hugs,

    Deb

  • 304. Re: My next step???
    warrior Registered Users
    Currently Being Moderated

    Karen

    enjoy your last few days of freedom and then may you have a boring month or so with the chemo doing its trick and no infections, fevers or rashes. Kathy's counts took 6 weeks to come back and one theory was the ectoposide was the cause.....I imagine that you will be getting a lower dose... she got  hi doses of everything. She had a hickman and then an ash-split catheter (for harvesting her own cd34+ cells) and she showered every day. We used shower guards and a new cling wrap.  good luck

  • 305. Re: My next step???
    Tex Registered Users
    Currently Being Moderated

    felursus wrote:

     

    I hope they DON'T put in a Hickman: I'd prefer a PICC.  I can live with that

     

    Having had both, I'd take the Hickman every time.

     

    Every time.

     

    Blessings

  • 306. Re: My next step???
    Katsdad Registered Users
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    Agree.  I've had both, too.  Much prefer a Hickman.

  • 307. Re: My next step???
    felursus Registered Users
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    I'm told they are going to do a PICC.  They apparently are well-equipped with PICC covers for showers.  I had a chat with the NP.  So here's the latest update:

     

    Tallman said he was going to be "very conservative"  when I saw him last Monday.  He asked me to come in on Tuesday and Thursday for f/u bloods, as he was worried about my plts.  I had been having some pain/discomfort on urination for a couple of days, so I contacted my old MD at Presby.  He had me come in and leave a sample.  Then I left a sample at MSK.  The NP asked for my tel. number and number of my pharmacy.  I mentioned that during that evening I'd have my phone off for a while, but she could leave a message.  No message was ever left.  Next day the Presby MD left a script for Nitrofurantoin at my local pharmacy (more about that later).  Thursday I not only had to have bloods drawn but also a MUGA scan.  When it was over I could barely move.  According to the lit on MUGAs there aren't any side effect.  I took a cab home, lay on my sofa from 7-11 and then went to bed - barely able to stand to brush my teeth.  I woke up at 3 with shaking chills and totally soaked sheets.  That stopped after a few hours.  Friday, I had to move the car for alternate side parking, and we went to get a huge quantity of cat food.  I spent the day on the couch.  I knew I had a fever, so I called Tallman's NP.  She made me go in to Urgent Care.  I was there from 5 - 11:30.  They took blood cultures from both arms, took a pee sample, a nasal swab (well two actually) and a chest x-ray (which was clear).  They then admitted they wouldn't have the path from the cultures back for a while - and didn't I want to stay? NO.  They gave me a script for Levofloxacin.  I cabbed it home and sweated out a second night.  By Sat a.m. I didn't have a fever any longer but still felt pretty horrendous.  I went downtown (by cab) to my salon for a mani/pedi and back the same way.  Today I crawled down my hill to get my hair cut really short (I miss my lovely curls), but had to take a bus up hill.  In the meantime, I got around to reading about the side effects of the Nitrofurantoin: anorexia (yay! - yes, I could go hours and hours without feeling the slightest pang of hunger), shortness of breath (yesterday, I thought I was having an asthma attack for which, fortunately, I am equipped with meds) with the slightest exertion (thus the cabs and bus), and extreme fatigue.  I got it all.  I feel like I've been on chemo for a week already.  So as I couldn't (for a number of reasons get the Levofloxacin script filled until today, I've decided to skip tonights dose of the Nitrofurantoin and take the Levofloxacin in the morning.  I want "stuff" out of my system!

     

    Meanwhile, no one from the hospital has called either to follow up or to tell me what time to show up tomorrow.  That means I have to call Tallman's NP.  I'll keep everyone updated.

    Karen

  • 308. Re: My next step???
    tadly Registered Users
    Currently Being Moderated

    Hope you start feeling better soon.  The ironies in what you're going through are hard to believe.

  • 309. Re: My next step???
    Tex Registered Users
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    Would you please take your meds as the docs prescribed them?  Let us know what you're finding out as soon as you can, please.

     

    Blessings

  • 310. Re: My next step???
    DebbieW Registered Users
    Currently Being Moderated

    When you have a moment, let us know where you are, hope things are beginning to get straightened out.

  • 311. Re: My next step???
    felursus Registered Users
    Currently Being Moderated

    WELL, no one ever called me from Admissions on Sunday night.  No one has yet called me from Tallman's office.  You'd think someone woulda noticed that I was MIA.  You'da thunk that SOMEONE would have thought to do a follow-up given that I went to Urgent Care on Friday.  But apparently good communication is NOT their forte.  Pissed off is putting it mildly about how I feel.  Now the nice NP who knew about the UC visit said she'd be off on Monday, but of course that could have also meant she'd be off all week.  I don't know.  I composed, edited and re-edited a lengthy email detailing the history since last Monday to Tallman, and I finally hit the "send" button about an hour ago.  My lovely Andrew (the MD at Presby) made the analogy of: I'm trying to decide if I want to date exclusively/get engaged but I've discovered a potential "in-law" problem.  (i.e. staff).  In the meantime I've had these horrible night sweats: poor Alec is sick of doing laundry.  (We live in a 15-building co-op with only one laundry room - thanks to the ADA and because the place was built in 1924 and they had a personal laundry service back then.)  I'm afebrile however.  Tex, you'll be happy to hear that after letting the first abx clear my system, I've been taking the second one on time - and haven't had any side effects from that one.

     

    I am soooo angry: I don't know whom to blame: Admissions, Tallman's NPs (he's got 3)....  Something's "rotten in the State of Denmark."  I do, of course, have a Plan B: I can go to Presby and get the same chemo regimen - now that I'm not going to do a study.  I'd probably even get my "room with a view" back.  We shall see what transpires.

     

    I'll keep y'all posted.  (Sorry, Tex! )

    Karen

  • 312. Re: My next step???
    DebbieW Registered Users
    Currently Being Moderated

    Karen,

    Not acceptable in the least and I'm glad you decided to hit the send button. It is hard to say exactly who is at fault, but I would think if the doctor had scheduled your admission for Monday then admissions would have called you on Sunday. I would be on the phone to his office and might as well call admissions and see if they have any record of you being scheduled.

    Mike's doctor was always pretty good and called back or had someone call back the same day, did I mention this is not acceptable

    Hugs,

    Debbie

  • 313. Re: My next step???
    Tex Registered Users
    Currently Being Moderated

    felursus wrote:

     

    I'll keep y'all posted.  (Sorry, Tex! )

     

    Oh, that's okay.  I've gotten used to people misspelling "ya'll."

     

    I am happy to learn you're taking your meds as directed.  I hope the uniqueness of the moment isn't too strange for you.

     

    I commented on the mess with Tallman in the other thread.  It sux but what are you going to do?  They apparently don't teach The Importance of Effective Communications 101 in Med School.

     

    Blessings

  • 314. Re: My next step???
    willowbayfarm Registered Users
    Currently Being Moderated

    Hi Karen,

     

    I'm just hoping this is as much drama as you'll encounter for the next while...and I think it's probably good you found out that there's a flaw in Tallman's system now, rather than later.

     

    I hope things get sorted out quickly and you can concentrate on getting yourself better rather than gnashing your teeth in frustration.  If you're not having side effects or fevers, what do you make of the night sweats?

     

    Let us know where you end up so we'll know where to direct the good thoughts we're beaming at you!

     

    - WBF

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