The Leukemia & Lymphoma Society - Fighting Blood Cancers
51 Replies Latest reply: Aug 4, 2012 10:21 AM by cori RSS

jitters

cori Registered Users
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So I've got the jitters.  My boyfriend, Fran, probably does too. 

 

He was dx with AML in 2009 and successfully went through induction and 3 rounds of consolidation, which put him in remission until this month.  Now it's back and they want to do a transplant this time, in addition to standard induction.

 

I was a member of the boards here back in 2009, although I didn't post a lot, but came back now that Fran's AML has returned.  I've been poking around for reminders as well as information about transplants, since that part of his treatment is new to us.  I've been fairly calm up until now but his treatment starts tomorrow and I'm starting to get the jitters.  On one hand, we know what to expect and that makes some of it easier but on the other hand, I'm more worried about infections this time around. 

 

I also have much more on my plate than last time around and I'm worried about juggling it all.  I'm worried about not being able to be around as much to ask the questions and follow the progress reports and generally be a caregiver and advocate.  I'm worried about holding it together and keeping my head straight.

 

Cori

  • Re: jitters
    Tex Registered Users
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    Those are all legitimate concerns, Cori.  I think the thing to do is just commit to making it work, which I know you've done, and trusting it will do so.  Things have a tendency to look far worse at a distance than they do up close.  As each individual trial approaches, you'll find what you need to work through it and conquer it.

     

    I remember you and Fran.  I have a lot of faith in you two.

     

    Is this going to make the anxiety go away?  Probably not.  But maybe you'll remember from time to time and it will help you find the steel you need.

     

    Blessings

  • Re: jitters
    willowbayfarm Registered Users
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    Hi Cori,

     

    I remember you and Fran, too.  I'm sorry you're back for "round two", but I think Fran's in great hands with the folks at the Hutch.  What I can't remember is if he or you have family or friends close by that you can call on to help fill in the gaps wherever they may occur since you job situation has changed since the first time you both tangled with this stuff.  So often friends and family want to help but don't know quite what to do, so it might be helpful to think through your day to day routine and figure out what stuff could be delegated out to someone else.  I found if I identified some things I could use help with and offered my buddies a choice, often they would simply select one and I could check it off the stuff I had to try to deal with.  Just a thought.

     

    On the other hand, as Tex said, I think once you two get going, you'll get it worked out.  Checking with the social workers at the Hutch to see if there are solutions as far as transportation to and from appointments and the like is probably worth looking into. 

     

    Mostly I wanted to wish you both well, and I hope everything is smooth sailing from this point on.  I'll be keeping you both in my thoughts and prayers.

     

    - WBF

    • Re: jitters
      cori Registered Users
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      willowbayfarm wrote:

       

      What I can't remember is if he or you have family or friends close by that you can call on to help fill in the gaps wherever they may occur since you job situation has changed since the first time you both tangled with this stuff.  So often friends and family want to help but don't know quite what to do, so it might be helpful to think through your day to day routine and figure out what stuff could be delegated out to someone else.  I found if I identified some things I could use help with and offered my buddies a choice, often they would simply select one and I could check it off the stuff I had to try to deal with.  Just a thought.

       

       

       

       

       

      - WBF

      Thanks for the delegation reminders.  Last time I had a bunch of people lined up for tasks but many flaked out.  I wound up making new friends by asking Fran's old customers (he was a bartender) if they would like to help.  A couple of them turned into very close friends because of the experience.  This time, I've already had a couple of people tell me they could have done more last time and want to make up for it this time.  I'll believe it all when I see it, but I think that if I can get drivers lined up, that'll be the best I'd like to accomplish.  I'd love help with cleaning, but drivers are my top priority and our unemployed friends seem interested.  Again, time will tell.

       

      Cori

  • Re: jitters
    cori Registered Users
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    Thank you both, Tex and willowbayfarm.

     

    Chemo started Thursday, we're back on the 7th floor, although this time we're on the other side of the floor from when we were here before. 

    The team that makes rounds is headed up by a guy I remember from last time, but the fellow and all the residents are different.  Fran doesn't feel confident in them and he isn't comfortable with the doctor who is assisting his primary oncologist.  We've had a couple of flaky nurses and one doctor, I can't recall if she's an intern or what, but she giggles at everything.  It's like she's shy or nervous and she instills absolutely no confidence. 

     

    The positive is that Fran's favourite nurse is back.  She left the 7th floor just as Fran was leaving treatment and when he was preparing to come back this time, he was very depressed about missing out on his sweetheart.  He perked up quite a bit when we heard she recently returned to the 7th floor.  I really like the nurse he has today too, hopefully we'll get her more than 1 day. 

    There isn't much hand-holding this time and this is making me a little jittery.  Like I'm going to forget something.  Today I asked what Fran's cyto results were since we never heard.  He is MLN1 negative and FLT3 negative.  Last time he was MLN1 positive, there were some noises about the change but I don't know enough about the cyto to know what it all means.  We didn't talk about cyto last time at all because Fran's doctor just wanted me to know that he was in a very low risk/high success category.

     

    I don't know when we're going home, getting chemo started was completely goofed up on Thursday.  He was supposed to start after his Hickman was placed but there was some confusion.  Which, again, did nothing for our confidence.  He's on a 4 day regimen and got started at 10pm Thursday (good god, it took 12 hours to sort out the mess and in the meantime they didn't have a dietician stop by to assign him his dietary needs, so they wouldn't let him eat).  Because he didn't start until 10pm, I'm thinking he won't be done until 10pm Sunday.  Which could mean a Monday release, they're talking about sending him home right away, but it's all just mutterings and we have no real idea.  My list of questions tomorrow includes "what are we looking for to send him home or keep him on Monday?"  I remember what it will take to bring him back to the hospital, the neutropenic fevers. 

     

    Speaking of neutropenia, that's what I'm worried most about at this point.  Fran doesn't seem to think fevers will be that big of a deal at all, that he'll just be able to call me at work and I can come get him.  !!!!!  He and I need to do more talking about this and I plan on running all this by his favourite nurse when she stops by to say hello, when she has a break.  Actually, I could start asking questions of today's nurse, since I like her, and test the water with her a bit.... see how much she knows. 

     

    The upside is Fran still feels really good.  We've been able to stay ahead of the nausea and I'm nagging him about gargling.  He didn't have much in the way of mouth sores last time, it was his hands and feet, mostly. 

     

    The floor has made some upgrades:  DVD players and flat screens in the rooms, plus free wi-fi in all areas.  Nice!  The caregiver lounge has no DVD library built up yet so I bought a few used DVDs yesterday to donate. 

     

    More as I know it.  Thanks again, I'm just trying to keep the jitters at bay.  When I go home for mail and such, the cat is a complete goofball, she's in total withdrawal since she's used to having someone around all the time.  She's new since last time, she'll be good company for Fran when he's stuck at home in bed.  He's the self-avowed cat hater but is completely smitten.  Whenever I come back to the hospital he asks all kinds of questions about what she's doing, etc.  Hilarious.

     

    Hugs,
    Cori

  • Re: jitters
    cori Registered Users
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    Oh great.

     

    It's still early but they are starting to think that Fran's leukemia this time is completely different.  That it isn't the same leukemia he had last time.  They still are kicking around the idea that his former leukemia morphed, everything's different, they aren't positive that it's a "relapse" in the purest sense of the word..  Proteins, MLN1, and more are all different.

     

    It's good that this happened in a teaching hospital but it has the experts puzzled.  They're still recommending transplant, now more than before although we haven't had any transplant consultations yet.

     

    More jitters.

    Cori

    • Re: jitters
      Tex Registered Users
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      Maybe this is a secondary AML.  I mean, it's weird but it's happened before.  The treatment for AML produced a new AML.  That would suck but maybe not as bad as a relapse.  If it's a new disease, it hasn't become chemo resistant.

       

      I asked about Ping on Coris' thread but I've got to ask who the favorite nurse is and who the other nurse was that you liked.  I kind of expect a number of those folks to still be on task.  I had a nurse who was so bad, I told Ping I never wanted her for a night nurse again.  She wasn't even an oncology nurse, let alone a transplant nurse, and she was just terrible.

       

      I guess there's an occasional rotten apple in every basket no matter how great the rest of them are.

       

      I'm sorry for all the confusion.  Still, it's best to be able to attack the right disease in an effective manner. I hope they kick its ass soonest.

       

      Blessings

      • Re: jitters
        cori Registered Users
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        Just replied to your Ping request, she retired a couple of years ago.  Fam is Fran's favourite nurse, she is wonderful.  The nurse I liked is Mikhai (I like Fam too).  There is one nurse on this floor that I despise and I don't know her name.  Fran and I were horrified to see she's still here when we returned.

         

        Secondary AML.  I'll do some research on it.  Good to hear that it might not be chemo resistant, that makes sense since we might be treating something new.  I do like the attending doctor, Dr. Hendrie, he's been really helpful.  I'll ask him about secondary AML.

        • Re: jitters
          Tex Registered Users
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          Ping is a great nurse.  Do you know if Erin is still there at night?  She was even better, IMO.

           

          I don't even recognize the names you mentioned.  I guess there's more turnover there than I thought.  I know the nurse that signed on as my second associate nurse, Keiko, left when her husband got transferred or a new job or something.  She's a loss, too.

           

          Blessings

          • Re: jitters
            cori Registered Users
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            Erin doesn't sound familiar but I'll ask around.

             

            I was incorrect about the chemo scheduling, it doesn't end until tomorrow night.  We might not go home until the 4th, which would work since I'm off that day.  But because we don't have a backup caregiver and I work during the day, they are making noises that they might keep Fran.

             

            Cori

            • Re: jitters
              Tex Registered Users
              Currently Being Moderated

              That actually sounds like a really good idea.

               

              Blessings

              • Re: jitters
                cori Registered Users
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                The decision has been made to send Fran home tomorrow.  Just in time for him feeling crummy, the side effects started kicking in last night before dinner.  I was with him at the hospital all day Thursday, Friday, Saturday and yesterday but today I had to return to work.  When I phoned him this afternoon to see how he was doing, he sounded pretty bad, although the worst is still to come.  He was chipper until last night but now I get him at the bad parts, lol.

                 

                In the meantime I have to somehow get the house cleaned up to the proper standards.  Not sure how I'm going to do that, I'm not the housecleaner of the two of us and I'm not real confident about this.  Of course, I have to, and will forge ahead but I have some doubts.  Fran is fussy and meticulous to say the least.

                 

                And I'm not sure exactly how he's going to get to his appointments but I guess we'll just have to take it a day at a time.

                 

                Cori

                • Re: jitters
                  Tex Registered Users
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                  You might speak to the hospital or his nurse to find out if there's a housekeeping service that can come and get the house up to standards for you.  That might even be covered by insurance.  I don't know.  Could be.

                   

                  I'm still amazed they're discharging him.  It would take a lot for me doubt the Hutch.  They had a whole lot of protocol variations, like no masks, and I sailed through.  They know what they're doing, even if we don't see the wisdom.

                   

                  If you have any friends with their days free, please see if you can recruit them for trips to the clinic and also to check in on him throughout the day.

                   

                  Blessings

                • Re: jitters
                  willowbayfarm Registered Users
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                  I'm with Tex, I'm a little surprised they are sending him home after induction - I did all my consolidations outpatient after the initial administration of chemo, but I was glad I was in there after induction.  Did they do the standard 3+7 induction again this time?

                   

                  I'm hoping you rounded up some of his bar buddies and offered them some beer to help you get the place cleaned up! 

                   

                  Keep us posted, we're thinkin' about you both and beaming good thoughts towards Seattle!

                   

                  - WBF

  • Re: jitters
    cori Registered Users
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    They postponed by a day, Fran is now coming home today.  He needed platelets and hydration and by the time that all got straightened out they decided another night would be best.  The decision actually came after Fran asked if they had his Go Home kit assembled, they didn't even know what he was talking about.  He said "you know, my flushing supplies, port cleaning supplies, all that."

     

    Oh, they said.  When they found that nothing had been assembled they said they would keep him until today. 

     

    He didn't have the standard 7+3 induction, he had a mini, but still.  I really thought at the beginning of this he'd be in for a week and I packed accordingly: a week's worth of clothes, etc. 

     

    In the meantime, I got things cleaned.  Well, the bathroom is spotless, the vacuuming is done and the sheets are clean.  Still more to do in the kitchen but the most important part, the sink, is done, so I'm happy.  Since Fran's the Cleaning Person at our house, I was just feeling inadequate but I found some stellar cleaning product that made my life easier.  Made the shower and sinks look new, so I went back and bought a case of it.  Literally.  LOL    I figure if I'm on point to do the cleaning for a year, I might as well arm myself. 

     

    I haven't talked to him yet today, mornings are always chaotic so I figured I'd wait for him to call.  I spent most nights with him at the hospital but went home the night before last.  Since he was feeling so awful yesterday, I figured there'd be no reason for me to spend last night with him at the hospital and went home to the cat again.  When he's sick, he prefers to be left alone and he's feeling really bad so I'll just give him and the nurses some space while he's being well taken care of.  I'll have plenty of my share after he gets home.  Last time he had leukemia, I spent every single possible second with him and it probably didn't do much good in the long run so I'm doing things a little differently for me this time.  Just a little. 

     

    I hope everyone has a Happy 4th!

    • Re: jitters
      Tex Registered Users
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      Just remember to use Clorox wipes or a solution of 1 part bleach to 10 parts water to clean counters.  That's about the most significant thing my wife did day in and out.  That kills germs and gives us a better chance of avoiding them.

       

      And make sure Fran keeps the no cleaning rules close to his heart and takes then seriously.

       

      Blessings

      • Re: jitters
        cori Registered Users
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        I wish they had at least kept him until his pee wasn't toxic, but they know best.  It's disconcerting to see the notices for all medical staff to take precautions around Fran's waste until 7/5 or 7/6 but they sent him home on the 4th. 

         

        Fran's primary oncology nurse told Fran yesterday that the onocologist is starting to not buy into the neutropenia thing.  He said a patient could lay low for a week, which is when they're feeling really crummy anyway and then not adhere to the previously prescribed protocols.  I haven't come to terms with it yet so I'm still cleaning meticulously, etc.  I'm allergic to bleach but it's a necessary evil and bought some when Fran was diagnosed.  I wish those Clorox wipes actually had bleach in them, but at least they do some disinfecting.  I've been using them as a "finisher" and to wipe the toilet seat constantly.

         

        Fran is not taking the "no cleaning" seriously enough and I've had to talk to him about it.  The litterbox was suspiciously empty when I got home yesterday and when I asked Fran about it, he confessed to cleaning it while "holding his breath".  He probably washed his hands after since he has always done that, but oy.  Yes, I yelled at him.  His oncologist's beliefs that neutropenia isn't a major problem didn't help any.

         

        Aside from that, Fran had a good conversation with the onc nurse.  She's been away on vacation but Fran trusts her very much from working with her last time.  She gave Fran a good overview of what to expect next and she recommended that he make arrangements to stay at Pete Gross House while he's going through transplant recovery because we've had a difficult time with finding drivers.  Plus traffic in Seattle has gotten so bad, emergency trips from home could take longer than they should.  We're already looking into whether Medicare will help cover the costs, plus Hutch has a financial assistance program available. 

        • Re: jitters
          Tex Registered Users
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          cori wrote:

           

          I wish they had at least kept him until his pee wasn't toxic

           

          Why?  I mean, he's not the Dali Lama is he?  He's not going to drink it.

           

          I imagine they have the warnings because they need to be aware as they might actually handle some of his waste.  Then again, it's not like people mess with it bare handed.  Still, he'll just be flushing it out at home.  I don't see this being a problem so long as he has his continence.

           

          I know they are pretty advanced in their approach to neutropenia, but I think that doc's a bit off his nut.  I know a lot of folks who had some real issues with infections while neutropenic. 

           

          However, I'll bet the doc does give a damn about the cleaning, especially the litter box.  That is one very specific, well, I'd say no-no but this is too serious for such a light term.  I don't think breathing in is an issue.  And if he has to do it or go crazy, he needs to wear gloves and a mask.  I learned not to rely on masks at the Hutch but they will serve their purpose long enough to get in and out of a litter box,  (That sounds gross, doesn't it?)

           

          Have I asked the names of his current doc and his nurse?

           

          Blessings

          • Re: jitters
            cori Registered Users
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            Dr. Estey and Donelle. Love them both.

             

            Ok about the pee. I was concerned about splash back and toxicity to me. It seemed to be a concern for everyone entering his bathroom, even cleaning staff so I was just following that concern for myself.

             

            I think he cleaned the litterbox again but am not positive. I'll ask him about and get some masks for the bathroom. (that's where the litterbox is located)

             

            Damn he's in the grumpy phase right now, just what I've been dreading. He has every right to feel grumpy since I'm sure he feels like shit but I think I'll make myself a little scarce this weekend. It doesn't help that his best friend just died this week from cancer, maybe he just needs some room.

            • Re: jitters
              Tex Registered Users
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              Never met Dr Estey but I hear she's big medicine around there.  She was doing some work with expanded cords, if I've got the right name to the right person.  I might not have the right doc but I think I do.  Now you'll tell me Estey's a man and I'll be completely embarrassed.

               

              I never met Donelle, either.  One thing I've noticed in writing with folks over the years is that virtually everyone thinks their curses are God's gift to cancer patients and wouldn't want another one.  My clinic nurse was Pat (redhead) and I think she hung the moon.  I think that says a lot about the quality of the entire nursing unit that each nurse seems to evoke so much loyalty in their patients.

               

              I mentioned the gloves and the mask but what I really think needs to be done is that you've got to rat him out to the doc and let the doc be the one who carries the water on this issue.  If Fran doesn't get the message from Doc Estey, then he just might not get it.  Unfortunately, patients thinking they know better than the docs tends to get them into real trouble.  Worst case scenario, they up and die.

               

              If I might make another suggestion, if you're going to be scarce, I hope you're also going to be at hand.  I know the weekend's half over by now but I know it would shake me to the core if my best friend died of cancer while I was fighting my own battle.  Fran might be a little moody, and rightfully so.  He might need to be quiet but there will be some point he might need to talk.  He'll need a loving ear there, when that time comes.

               

              I don't know about the whole bathroom mess.  I don't think splash back in using the toilet should be a problem.  I imagine it was when they were working with specimens that the concern was thew greatest.  But, heck, ask Donelle. 

               

              Hang in there.  You've got a lot to contend with and overcome.  Stay on course and you'll do fine.

               

              Blessings

              • Re: jitters
                willowbayfarm Registered Users
                Currently Being Moderated

                Tex wrote:

                 

                Never met Dr Estey but I hear she's big medicine around there.  She was doing some work with expanded cords, if I've got the right name to the right person.  I might not have the right doc but I think I do.  Now you'll tell me Estey's a man and I'll be completely embarrassed.

                 

                                                                                                                                                                                                                                                                                                                         

                You really know how to drive me out of hiding, don't you?  Estey is definitely a guy. 

                 

                - WBF

                • Re: jitters
                  Tex Registered Users
                  Currently Being Moderated

                  willowbayfarm wrote:

                   

                  Estey is definitely a guy. 

                   

                  Well, then, all I said about the expanded cord is gone, too.  I remember this doc I was talking about was definitely female,  She's about the only doctor's picture I ever looked up.  I don't know if you were here when Sam from Australia (Sammac) was writing about her husband who'd come to the Hutch for the expanded cord protocol with the doc who was pioneering it.

                   

                  You know, I kept picturing Estey as a guy but closer to the Seaboard than Seattle.  Now we're talking about him in Seattle?  I'm confused.

                • Re: jitters
                  cori Registered Users
                  Currently Being Moderated

                  Here's a youtube of our Dr. Estey 

                   

                  http://www.youtube.com/watch?v=K4xqW84R0sU

            • Re: jitters
              willowbayfarm Registered Users
              Currently Being Moderated

              I'm absolutely with Tex on this one.  Rat him out to the doc and let them be the "bad guys".  There's no way he should be dealing with that litter box right now. 

               

              You know, one thing I noticed after every treatment was it was followed by a period of feeling irritable and agitated.  It took me a while to realize it was probably due to the fact that they had me on decadron during treatment and then it was withdrawn and I had a secret desire to throw myself in the floor and have a small screaming fit.  Steroids are great in some ways and nearly intolerable in others.  Going through this again and losing his friend to cancer at the same time would be really hard to deal with.  It's just going to take him some time to wrap his head around all that.  This is a tough disease emotionally, with way too much time to think about all sorts of stuff including uncertain futures and the prospect of possible unpleasantness to come in the way of physical symptoms. 

               

              Just try to be there if he needs or wants to talk.  It's a difficult time for everyone involved.

               

              - WBF

              • Re: jitters
                cori Registered Users
                Currently Being Moderated

                Dammit, I forgot about the prednisone.  I was on it for YEARS and should honestly know better.  Fran was on it for a few days and it probably sent him for a loop when they stopped it.  He's sensitive to some meds (antihistamines, for example), I'm REALLY sensitive to prednisone, I should have understood this better. 

                 

                He is now feeling so rough that I don't have to worry about ratting him out.  He's not even doing the dishes, which is fine.  I don't care if he doesn't do anything, I'd rather he did nothing than did the things he's not supposed to do.  He has cried uncle and will not touch the litterbox. 

                 

                He went in for a platelet infusion this morning and he had a fever.  He left me a voicemail that they were schlepping him over to be admitted to 7NE, hopefully it's a neutropenic fever.  It's about the right time for one.  I have a 1pm meeting and then I'll go home to get a bag packed for him and head to the hospital. 

                 

                We had a good long talk about our friend Saturday night before we went to bed.  We planned putting on a memorial later after Fran is feeling better and that is giving Fran something to work on.  He's already taking notes for a eulogy and it's keeping Fran busy with something besides freaking out about not being able to clean anything.  My group of friends had a campout over the weekend and I was going to skip it but I left very early yesterday morning to drive down to the cabin to join them for breakfast.  It was good for both Fran and I, he had some time to just sleep without someone hovering over him or fussing around the apartment.  I was able to get away for about 12 hours and was home just in time to flush his lines and fix him dinner.  He was feeling pretty badly again this morning when I drove him to his appointment, he's going through a rough patch.

                • Re: jitters
                  Tex Registered Users
                  Currently Being Moderated

                  I hope it's nothing serious that's landed him in the joint.  Please let us know what's going on.

                   

                  You know, when he's feeling better, he might forget how bad he's feeling now or he might dissociate this experience with how bad he felt.  But he's supposed to be away from that litter box and anything with any potential contamination so long as he's on immune suppression.  So you might want to keep an eye on him.

                   

                  So, they had a camp out at a cabin?  That seems contradictory to me but I don't live in Washington.  I do want to camp in the Cascades someday.  It's something I've wanted to do since we first pulled into Seattle.  Are they going ot make me get a cabin??

                   

                  Let us know how Fran's feeling.  I hope all is well.

                   

                  Blessings

                  • Re: jitters
                    cori Registered Users
                    Currently Being Moderated

                    Fran's still in the clink but it was "only" a FUO, fever of unknown origin, that landed him there.  And the fever didn't even last that long, it was gone after lunch.  I guess they were being cautious, they even sent Fran by way of ambulance.  His first ambulance ride, LOL.  Asking him about it guarantees a funny story, he apparently felt they took the long way to run the bill up like a cab.

                     

                    He's been getting a lot of transfusions since he's been in, it seems an unusual amount but they definitely make him feel better.  He was scheduled to have a bone marrow biopsy today and they told him they would just do it at the hospital, not the clinic as originally planned.  That's how Fran figured they would be keeping him for a few days.  When the results come in we'll know if the chemo did what it was supposed to on Fran's leukemia, fingers crossed.

                    He's having a lot of diarrhea, which might be dehydrating him a little, although they've been good about keeping him on a saline bag.  They tested him and he is bug free, it's just what the chemo did to his digestive system this time.

                    Our consultation for the transplant is set for August 2nd.  We got good news yesterday about coverage:  Medicare is covering Fran's chemo and other treatment and the clinic will pick up where Medicare leaves a gap (prescriptions and 20% of medical bills).  They told Fran to apply for Medicaid and that would cover his transplant and probably housing at Pete Gross.  Even though we live in Seattle, it's been determined that Fran should stay at Pete Gross after his transplant.

                     

                    So off-topic, the cabin.....  it's got enough room to sleep 2 and my friends invited a zillion of our motorcycle friends.  About 20 showed up, I think a dozen camped and the rest found motels nearby (those who weren't up for roughing it, LOL).  I couldn't make the camping part of it since I didn't want to leave Fran alone at night, but I got up at oh-dark-thirty and made the 2.5 hour drive to join the remaining folks for a camp-out breakfast. It's in a gorgeous area about 20 minutes from Mt. Rainier.  Camping in Washington is a blast, no cabin required.  Fran and I have done a bit of motorcycle camping in the past, we've had some great times.

                    • Re: jitters
                      Tex Registered Users
                      Currently Being Moderated

                      Maybe the doc's rethinking the whole "neutropenia's for wienies" doctrine and that's why they're keeping him in.  Who knows?

                       

                      My first ambulance ride was to UW ER.  I fell and shattered my humerus during my first year checkup.  The Dilaudid made the whole checkup kind of interesting.

                       

                      That's great about the coverage.  It sucks not to have insurance but the real need is to have it covered and it is.  So, yippee!

                       

                      Keep us posted.  Be prepared, they will try to scare the living hell out of you at the consultation.  They were going through an informed consent lawsuit when I was there (they won) but they decided to become brutal in the information they share with the patient.  They'll paint the picture as dark as possible.  But, as you know, once that's over with, they'll become the most upbeat and confident set of cheerleaders you'll ever meet.

                       

                      Blessings

                      • Re: jitters
                        cori Registered Users
                        Currently Being Moderated

                        Damned thing is a roller coaster.  Yesterday was up, today.... not so much.  About the finances, I mean.  Today we found out that coverage for typing sketchy.  Medicare probably won't cover it or if they do it's 80% of $5,500 PER MATCHING PROCESS.  $2,200 out of pocket right there just to type Fran's two eligible sibs.

                         

                        They're advising applying for Medicaid ASAP.  Like, yesterday kind of ASAP. 

                        • Re: jitters
                          Tex Registered Users
                          Currently Being Moderated

                          Then apply for medicaid as of yesterday.  That's expensive and no one should have to pay that alone.  Damn, I wish it would get to 2014 already.

                           

                          Hang in there.  Whatever it takes, you'll find a way to work it out.  But that's something you really shouldn't have to do when you're already sick.  Let others do some work for you, if you can.

                           

                          Blessings

                          • Re: jitters
                            cori Registered Users
                            Currently Being Moderated

                            We just found out that everything for the transplant is completely on hold until "financing is secured".  WTF, it would have been nice to know that sooner, we had plenty of time before to apply for Medicaid when Fran was feeling better.  I'm taking today and tomorrow off work to help Fran apply from the hospital

                             

                            Oh and the doctors on rounds said this morning that Fran will be in the clink for another 2 weeks.  I'm sorry, but I'm not sure I believe that.  He hasn't had a fever since his ambulance ride and he's had no vomiting, etc.  Dr. Estey always emails me back when I ask him questions, I'll shoot him an email and ask "Really??"

                            • Re: jitters
                              Tex Registered Users
                              Currently Being Moderated

                              Take a deep breath and try to relax.  You need a clear head to navigate this nonsense.  It is nonsense but, there you go.  People aren't always thinking ahead.

                               

                              My guess is that Fran boomeranged so quickly they might want to keep him around for the standard 21 day post-induction protocol now.  It's really for the better, if they do.  Fran was lucky he was able to contact the docs when he started getting sick the other day.

                               

                              I hope everything goes smoothly from here on. 

                              • Re: jitters
                                cori Registered Users
                                Currently Being Moderated

                                Fran's on Medicare, we thought "financing" was taken care.  Turns out Medicare doesn't cover transplants.  Nice to know.  <eyeroll>

                                • Re: jitters
                                  Tex Registered Users
                                  Currently Being Moderated

                                  Medicare doesn't cover transplants.  Oh.

                                   

                                  Better get any transplants I need done finished in the next six and a half years.

                                   

                                  Damn, and I wasn't planning on drinking my liver into submission until I turned 70.

                                  • Re: jitters
                                    cori Registered Users
                                    Currently Being Moderated

                                    Well, YMMV.  We were on Medicaid last time and Medicaid covered everything.  We're still learning the ropes on Medicare.  Guess this will be good for me to learn, although I won't need Medicare for <ahem> several years.  LOL

                                    So Fran's in the clink for quite some time.  They told him this weekend that he would be in until his counts recovered, which we thought was a bit odd since in 2009 Fran was always sent home before his counts came back.  However, he spiked a fever last night and they're working out its cause.  He's on all the requisite anti's, antibiotics/antifungals/antivirals.  Looks like he's in for the duration.  BIL and SIL were to visit on the 24th, this could get me out of having visitors, LOL.  He feels ok, just tired from everyone waking him up every 2 hours to take another med.  I finished up a pet-sitting gig yesterday and am going back to stay with him in the hospital tonight after work.  (un?)Fortunately, I have a ton of work to do for my day job, so I have plenty to keep me busy. 

                                    • Re: jitters
                                      cori Registered Users
                                      Currently Being Moderated

                                      Things sure change fast.

                                       

                                      Fran now has a lung infection, which is a little scary since he nearly died from a fungal infection in his lungs in 2009. They are still working out the mystery of what this current bug is so they can properly treat it.  They switched from antibiotics to antifungal but they don't really know what it is yet.  And no telling where he got it from.  I can't be there for morning rounds today, I'll just have to wait for Fran's report later.

                                       

                                      He's been good about exercising, really good.  Even though he gets completely winded from walking around, he's been doing laps on the floor.

                                      • Re: jitters
                                        Tex Registered Users
                                        Currently Being Moderated

                                        I'm glad he's been doing laps but trusty he won't be doing any vigorous walking for a wile.  I'm curious why they switched from anti-biotic to anti-fungal.  Until they know what they're facing wouldn't it make sense to take on any potential comers?  At any rate, I hope whatever it is is gone soonest.

                                         

                                        I've run into an Internet acronym I'm unaware of and can't figure out.  Wth does 'YMMV' mean?

                                         

                                        I do hope things turn around quickly on this lung thing.

                                         

                                        Blessings

                                      • Re: jitters
                                        felursus Registered Users
                                        Currently Being Moderated

                                        I think they are thinking "fungal", because it's a high-risk result of steroids.  I once (totally unrelated to AML) had 2 consecutive courses of steroids and wound up with a horrible case of oral thrush. My MD apologized for not having also prescribed an anti-fungal.  I'm currently in MSKCC for re-induction, and their protocol is to give everyone an anti-fungal starting 2 days after finishing chemo.  I'm actually in a study comparing 2 drugs: it's open-label (has to be, because the mthod of administration is different, so they'd be "tipped off" in any case). 

                                         

                                        I, too, would love to know what "YMMV" stands for.

                                         

                                        I hope Fran is feeling better.  Good for him for continuing to do laps - although don't let him OVER DO it.  There was a crazy lady here who said she did 2 miles - that's 28 laps - after each meal.  She must have been a hyper-exerciser before!  I fail to see how she could tolerate it: we've nicknamed the "track" (patient rooms are on outside, nsg. stuff in middle, leaving a rectangular corridor) "the hamster track".  My technique is to do 7 laps one way and 7 the other.  LOL. 

                                        • Re: jitters
                                          cori Registered Users
                                          Currently Being Moderated

                                          Fran's condition seems to be worsening, which is a bit worrisome to me.  More later, but YMMV equals "Your Mileage May Vary". 

  • Re: jitters
    cori Registered Users
    Currently Being Moderated

    I didn't know steroids caused fungal risk, I learned something new.  I was on prednisone for a decade, that could explain some skin stuff I had going on.  Fran was on the preventative right after chemo, but they've changed to a different antifungal.

     

    They switched from antibiotic to antifungal because the antibiotic wasn't getting anywhere, so they surmised "fungal" rather than "bacterial" as the source of cooties.  But now that they've had him on antifungal and he's still not improving, they're wanting better data. It's officially pneumonia and they've scheduled for him to have a bronchoscopy later this morning to biopsy the mass in his lungs and a chest X-ray right about now to make sure it's not getting bigger.  He had a fever early this morning of 102.9° and they scrambled to get him some tylenol, even though with the bronchoscopy he's not to have anything by mouth because of the sedation.

     

    He sounds and looks terrible.  He's still got an appetite, so that's an upside.  However, his counts are not coming back. They said the fever was eating up his platelets, although they feel other numbers should be returning.  He's been getting platelets pretty regularly.

     

    Another upside is his BMB last week came back clean.  He's officially in remission.

     

    This is just deja vu all over again, so similar to September 2009 when he nearly died.  He doesn't seem "quite as sick", but how to quantify that?  He's sick, he's getting worse, they're taking it seriously.  Hopefully he'll start getting better today.

    • Re: jitters
      Tex Registered Users
      Currently Being Moderated

      cori wrote:

       

      Hopefully he'll start getting better today.

       

      I hope that's the case, too.

       

      I dunno.  Steroids are immune suppressants so there's always a chance an infection could take advantage of that to establish itself in someone taking them.  I haven't heard that fungal infections are more likely than bacterial or viral but there's a lot I haven't heard.  Most of it's probably true.

       

      I'm glad they're going to find out what's up in there.  For some reason they seem especially leery of biopsies at the Hutch.  It took me a lot of lobbying to get them to do a simple liver bx when I was in otherwise very good health and shape.

       

      You know, appetites are so scarce in the hospital, it's impressive he still has one.  I hope he's able to hang on to that, the strength will help.

       

      Please keep us updated, Cori.

       

      Blessings

    • Re: jitters
      mamawarrior Registered Users
      Currently Being Moderated

      Your post brings back memories cori. Someone on this forum once described aml treatment as a rollercoaster ride through hell, i could not have said it better. Seems like frans counts should be recovering soon?? I hope being in the hospital they caught this quickly,  things improve, and he gets to feeling better. Hang in there.

  • Re: jitters
    jwalsh243 Registered Users
    Currently Being Moderated

    Cori:

     

    You are doing great and so is Fran.  Alot of things you don't remember about the first round of treatment are tucked away in your brain (like the steriods issues).  There are too many things to think about and remember when you are in the throws of treatment.  And it is "the throws".    I hope that fran is feeling better and that everyday he feels stronger than the day before.  Sounds like he has a good attitude about how to handle the hospital, doing laps and making sure to get exercise. 

     

    Being a fighter is half the battle.  Take Care. 

  • Re: jitters
    cori Registered Users
    Currently Being Moderated

    Ok, so it's taken a while but Fran is getting a little better.  He has aspergillus, fungal pneumonia.  They had to do a biopsy to determine exactly what was going on since he was reacting so slowly to the meds.

     

    In addition to all that, his numbers haven't been coming back.  At all.  Partly because of the fevers and just generally being sick.  So they tried an experimental therapy on him, they infused him with someone else's neutrophils.  And bam, it's working.  The side effects are fairly awful, but the end result seems to outweigh that.

     

    He's still in the hospital and I bet he's in for at least another week.  His siblings are in the process of being typed for a transplant match. 

     

    And I'm personally losing my marbles, LOL.  I house/pet-sit as a side job and between staying 1.) at the hospital, 2.) at 2 or 3 different houses, or 3.) home, I don't know which end is up!  I've misplaced a couple of things and it's getting pretty funny.  If anyone needs a laugh, picture a hairbrush accidentally going through the washing machine.  Thankfully, no clothing was ruined but it took me a good 20 minutes to untangle the mess.  lol

    • Re: jitters
      Tex Registered Users
      Currently Being Moderated

      Hmm, talk about wearing a hair shirt.

       

      I'm sorry Fran's having so much trouble.  I haven't heard of transfusing any WBC, I don't think (something's vaguely gnawing on the back of my mind but I don't think it was neutrophils, at any rate).  I imagine he's getting a taste of what GVH might be like...WBC attacking his body as the intruder.  Then again, without the immune suppression, I suspect he's getting a worse than typical case.

       

      Let us know how he's doing.

       

      Blessings

      • Re: jitters
        cori Registered Users
        Currently Being Moderated

        He had another fever this morning as I was leaving the hospital for work.  They were ordering labwork and he'll probably wind up in radiology again for a lung X-ray.  He's still got the pneumonia and a nasty cough.  This has just been dragging out for so long and he's so tired of it.  I was thinking that things would have turned around by now but maybe today or tomorrow's the day.

         

        So he's been in for 2 weeks and 2 days and it doesn't seem like he's coming home anytime soon. 

        • Re: jitters
          Tex Registered Users
          Currently Being Moderated

          I think you got your hopes up by his coming home so soon.  Unfortunately, he got an infection.  He has very little in the way of a natural immune system and its being put to the test early.  It does look like he's in for awhile but this is a good place for him to be, especially without someone home with him 24/7 for awhile.  And, given his disposition to go a'wandering from the rules list...well, think of it this way; he can't clean the litter box when he's in the joint.

           

          It ain't ideal but it's probably the best situation available at the moment.

           

          I am sorry he's continuing to deal with the sickness but this too should pass in time.

           

          Blessings

          • Re: jitters
            cori Registered Users
            Currently Being Moderated

            Fran got to come home last night, just in time to watch the opening of the Olympics.  We even had pizza!  A fairly normal evening.  After he went to bed, however, he had nightsweats all night and changed pajamas twice, in addition to my changing the sheets and his pillow.  No fever, so we figure it's just an adjustment after being in a temp controlled room for almost 3 weeks.

             

            That said, are we allowed to make a plug for a product?  Fran likes to wear a cap to bed and I bought him a backup last year for his birthday.  Well it turns out it stays bone dry during the nightsweats.  I've been on boards where product plugs are a no-no so I thought I'd ask.

            • Re: jitters
              Tex Registered Users
              Currently Being Moderated

              I think it's okay to mention a specific product that has actually helped someone and could help someone else.  I've certainly recommended some products that helped me by name.  Hell, there was a period where Columbia sports wear should've been paying me royalties but no one minded.  It helped people deal with issues they were facing, as they had helped me.

               

              So, plug away. 

               

              Just a guess.  Under Armor?

               

              Glad ya'll had a good evening.  Hope Fran stays out of the litter box.

               

              Blessings

              • Re: jitters
                felursus Registered Users
                Currently Being Moderated

                I wear a cap at night - specifically in the summer (well, I have yet to be bald in the winter).  It's no help for men (they seem to ignore men), but the Cancer Society has a catalogue/website (TLC - "Tender Loving Care") that sells hats, scarves, wigs, bras, etc. for women post chemo/mastectomy.  They have some soft, cotton night caps.  I'd freeze otherwise from the a/c.  So do go ahead and tell us what's helped Fran so much.  BTW, I FROZE my first night home - although in the hospital I kept the room quite cool.  Some drugs can make you have night sweats.  Ask his MDs  if there's anything he's taking that could cause it.

                Karen

                • Re: jitters
                  cori Registered Users
                  Currently Being Moderated

                  As a hobby I do endurance motorcycle riding and there is a company that makes gear for us to ride long distances more comfortably.  They make a helmet liner, which is what I bought for Fran as a cap.  LDComfort is the company, based here in Washington state near me, but known all over the world through our riding community.  The one downside to some might be their logo, which is a pic of a butt, LOL.  The company started with shorts and has moved to making other garments/items, including this nifty item:  http://ldcomfort.com/store/product.php?productid=20&cat=6&page=1

  • jitters
    cori Registered Users
    Currently Being Moderated

    Yet more action on the rollercoaster.  Fran's getting better, although he still feels awful.  His sweating has abated considerably.  He'll be on the antifungal for several months.  Thankfully it's covered on one of his plans (definitely not Medicare) since it's about $5,000 a month.  Nice, huh? 

     

    We went to the transplant consultation on Thursday.  One of the people we met with was from Financial services and we found out that Medicare does indeed cover transplants.  Not sure why we were told they don't, maybe it's because of the 20% co-pay, which is prohibitive.  Transplant is $800,000 and if you're on Medicare, they ask for a $16,000 deposit up front just to cover the start of prescriptions.  Fran's already applied for supplemental Medicaid and will likely be approved so we aren't freaking out too much about financials.

     

    However, we were told that for the first three months, after Fran is released from the hospital, he will need a 24/7 caregiver.  Is this true?  Does someone have to be with him all of the time?  I can cover the majority of that, but since I work M-F during the day, we would have a gap if this is really the case.  I'll ask the question again over on the transplant board, but it is definitely creating some stress. 

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