The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 315. Re: Dean's latest challenges...
    KyGuy Registered Users
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    Betsy,

     

    I'm glad that Dean got sprung.  I'm in Dallas this week so since you were in Houston, we should have gotten together - I mean it's not like this state is that big.

     

    Ok,so now it's time to take care of you.  Get plenty of rest.  Do whatever works for you to relieve stress - exercise, long walks, long baths, drinking heavily......

     

    Take care,

    Kelly

  • 316. Re: Dean's latest challenges...
    bwarren25 Registered Users
    Currently Being Moderated

    Thank you all so much for your care & concern and your understanding of the stress this journey can cause.  Kristen....what a jewel you are to those of us on these boards!  Your willingness to give of yourself to others even while going thru such a difficult time in your life is amazing.  Chris, I'm sure I don't know as much as all the doctors but I definitely know Dean!  Tex, I wish I had as much confidence as you that the details of things would get straightened out, but communication at MDA isn't always what it should be.  It took me multiple calls to the case manager, PA, and pharmacist with the home health provider to finally get Dean's IV caspofungin ordered thru June 20.  I'm still trying to get his schedule straightened out but I think we're getting there.    At least he has the meds he needs and that's what's important!  Kelly, the drinking heavily sounds good, but instead I slept from 11:00 last night until 12:00 noon today.  I haven't done that since high school!  I think I'm finally caught up on my sleep after staying with Dean in the hospital for 10 days...but now I'm wide awake at 1 AM!!!  Oh well!  Thanks again to everyone for all your love & support.....Betsy

  • 317. Re: Dean's latest challenges...
    Tex Registered Users
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    Any place has communications breakdowns.  The key is how well things can get resolved through them.  Sounds like you've had a major hassle, but I wonder if you'd even be this far ahead of the game in other hospitals.  MDA didn't get their rep for nothing.

     

    I remain optimistic.  It's obvious Dean likes it here and he's going to stay as long as he wants.

     

    Blessings

  • 318. Re: Dean's latest challenges...
    khenry Registered Users
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    Betsy,

     

    It is great to hear that you got some rest.  I have not slept past 6AM since Tom got sick.  Now it is just a habbit that I cannot seem to break.  I get up at 6am to get ready for work, and on the weekends I would get up at 6am have a cup of coffee and watch him sleep or have the coffee with him and just talk. 

     

    Hang in there Betsy and Dean....I am praying for you that Dean gets better, and that life gets easier for the two of you.

     

    Kristen

  • 319. Re: Dean's latest challenges...
    bwarren25 Registered Users
    Currently Being Moderated

    Hi gang.  Just a quick note to let y'all know how Dean is doing.  So far, no fever so that's good.  He's still coughing up junk from his lungs but I guess that's good too... To get it outta there!  We're still doing the IV caspofungin once a day and will keep doing that until the end of June when we go back to Houston for another CT of his lungs & follow-up with Infectious Disease & his transplant doc.  Hopefully the aspergillus will be much better under control...or preferably gone!!!!  Dean's biggest complaint right now is no energy.  I'm not sure if it's from the fungal pneumonia or maybe a side effect of the IV caspofungin.  He'll be getting lab work done here locally so I'm glad of that.  Anyway, just thought I'd check in.  Thanks again to everyone for your love & support.....Betsy

  • 320. Re: Dean's latest challenges...
    pamd Registered Users
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    Betsy, hopefully Dean's energy level gets better, but he probably needs this time to just rest and recover---again. Thank you for checking in, and I hope each day you guys see little improvements. You are right, coughing up the bad junk is probably a good thing:)

     

    Pam

  • 321. Re: Dean's latest challenges...
    Tex Registered Users
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    Great news, Betsy.  Dean keeps on kicking some butt and I'm proud of you both.

     

    Keep us informed.  He's going to lick all this stuff, yet.  Mark my words.

     

    Blessings

  • 322. Re: Dean's latest challenges...
    KyGuy Registered Users
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    That sounds good Betsy.  Does your car just automatically drive to Houston now?   Most of my docs are on the same road so my car just knew the way.

     

    Take care,

    Kelly

  • 323. Re: Dean's latest challenges...
    bwarren25 Registered Users
    Currently Being Moderated

    Hi LLS friends.  Dean & I just returned from M.D. Anderson for follow-up appointments and here's my latest Caringbridge update.  As usual, it's a long one, maybe longer than most!!!  Thank you all so much for your continued love & support....Betsy

     

    Dean & I just returned home from 2 days of appointments in Houston.  They did a follow-up CT of Dean's lungs to check the status of the fungal pneumonia in his lungs and then we saw Dr. Andersson, Dean's transplant doc.  According to the CT, the fungal pneumonia is much improved & resolving but is not gone completely.  Dr. Andersson said it can take a long time to treat fungal pneumonia so wasn't surprised that it wasn't completely resolved.  He wants Dean to continue the IV caspofungin until Aug. 29 (2 more months) to hopefully get rid of it for good.  We had hoped to discontinue the IV meds so they could take the PICC line out of his arm, but if this is what it takes to get rid of the fungus, that's what we have to do.  The good news is Dean's blood counts were much improved from when he was in the hospital in April/May.  His hemoglobin yesterday was 13.0 (up from 10.5), his white count was 6.5 (up from 5.2) and his platelets were 129 (up from 67).  The infection in his lungs can obviously make a huge difference in his blood work, especially platelets which almost doubled so I was really glad to see that!

     

    Before we left Dr. Andersson's office, he was apologizing for us having to wait so long to see him but I told him that wasn't a problem at all because HE is the reason we go to Houston - so Dean can be under HIS care.  Dr. Andersson was very appreciative of my comments and then said "Mr. Warren, YOU are what keeps me going...having a patient like you who has fought through so much with such strong will & determination is truly amazing."  I can't tell you how much that meant to Dean & I both, knowing how much Dr. Andersson cares and appreciates the effort Dean puts forth to win each battle.  Dr. Andersson truly is one of a kind!!!

     

    They also did a pulmonary function test and then we saw Dr. Dickey, the pulmonary doc.  Dean's PFT results were either the same as the previous test or slightly better so that was encouraging to know that the recent episodes of pneumonia haven't damaged Dean's lungs any further.  We also saw Infectious Disease and they agreed with Dr. Andersson to continue treatment for the fungal pneumonia with the IV caspofungin.

     

    While still in Houston today we went to see Dr. Melhoff at Fonderon Orthopedics for a consult to see what the options are surgery-wise for Dean's elbow.  Out of all of Dean's joints with avasular necrosis (AVN), his elbow hurts him the most.  Just turning a door knob or picking up a glass of water can be very painful.  We took copies of the last MRI of Dean's elbow for Dr. Melhoff to review, and the short version (as Dean calls it) is there is nothing they can do that will fix it.  The long version is they could do orthoscopic surgery to clean out the debris but that won't stop further deterioration or collapse. Dr. Melhoff doesn't recommend that option unless Dean's quality of life is such that the pain is unbearable.  The only other option, which Dr. Melhoff didn't recommend either, is total elbow replacement but that usually doesn't last very long.  After time the new joint will become loose and they would have to do more surgery to fix it, and then again & again.  Each fix would be more & more difficult because there would be less good bone to work with.  Dr. Melhoff said the increased pressure on Dean's arms using his crutches for the AVN in his ankles would also put further stress on the new joint and possibly increase the chance of it becoming loose or damaged.  The fact that Dean is still recovering from fungal pneumonia definitely makes him a poor candidate for any kind of surgery in the near future anyway.  I knew that was the case and we weren't considering doing anything right now, but just wanted to know what the options were down the road.  Unfortunately, it doesn't look like there's much they can do.

     

    Well, that's about it for now.  Since it's been a while since I've updated, I wanted to give everyone the latest.  Dean is definitely one tough cookie and a true warrior, and I ask that you continue to keep him in your thoughts & prayers.  Thanks again to everyone for all of your love & support as Dean & I continue down this journey.  Love always....Betsy

  • 324. Re: Dean's latest challenges...
    Tex Registered Users
    Currently Being Moderated

    The really important stuff is great.  The pneumonia is dissipating, the counts are coming back up.  Yeehaw!

     

    The stuff about the elbow isn't as good.  I'm sorry that there's nothing they can do.  I don't think there's a fairness to the universe but it seems that Dean could get a break somewhere.

     

    Just remember all of the forward progress we've seen on so many medical fronts since we started our joruneys here, Betsy.  What's impossible today might be possible tomorrow and run-of-the-mill the day after.  They might yet come up with something for Dean down the road.

     

    Right now, though, it sure looks like he's continuing to dodge the big bullets.  This guys isn't a cancer warrior, he's a cancer ninja.

     

    Blessings

  • 325. Re: Dean's latest challenges...
    KyGuy Registered Users
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    bwarren25 wrote:

     

    Unfortunately, it doesn't look like there's much they can do.

     


    right now maybe, but they're always working on the next solution.  Maybe as Dean gets stonger, they'll have a new option developed.

     

    The improvement sounds good.  I'm sorry there's not a better answer to his AVN.  He's a tough one.

     

    Take care,

    Kelly

  • 326. Re: Dean's latest challenges...
    bwarren25 Registered Users
    Currently Being Moderated

    Thanks Tex & Kelly for your replies.  Dean & I have had an interesting few days at our house recently.  Last Friday I started having some type of allergic reaction with a rash/welts/hives all over my arms & stomach.  It got worse during the night so I went Sat. morning to the First Care clinic & got a shot of celestone.  Sat. night it got even worse spreading to my face, back, legs & chest but was almost gone Sunday morning when I got up.  I really thought the worst was over.  Then it came back again Sunday night and was even worse on Mon.  The doc at First Care also gave me a 6-day Medrol pak prescription to take if it didn't get better in 2 or 3 days so needless to say, I started taking it about 3:00 a.m. yesterday morning.  It was still really bad last night & I was totally miserable.  To make matters worse, Dean woke up yesterday with a low grade fever that gradually went up to 103.  As usual when Dean has fever, he also started coughing up lots of green junk from his lungs. His temp stayed between 101-102 most of the day and was back to normal this morning & most of the day.  It was 99 about an hour ago so we may not be out of the woods yet.  Yesterday was a tough day because I was so worried about Dean, hoping it wasn't the fungal pneumonia flaring up even while still on the IV caspofungin & oral posaconazole, and wondering where things were headed.  Then I worried that if we went to Houston, would I even be able to be at the hospital with him on the transplant floor looking like I had the chicken pox.  I had even contemplated going to the ER here locally myself to get some relief because it felt like my arms & legs were on fire.  The Medrol pak has me pretty jittery too so I have a new understanding of what Dean must have gone through when he was on 150 mg of Medrol for the GVH of the gut and also how he feels when his itching is at its worst.  I'm hoping & praying that things are calming down for both of us.  I'll definitely keep you all posted.....Betsy

  • 327. Re: Dean's latest challenges...
    mamawarrior Registered Users
    Currently Being Moderated

    Betsy, i think you all ought to write a biography of your journey. But most would probably think its fiction. I hope things settle down, you all are sooo overdue. Take care.

  • 328. Re: Dean's latest challenges...
    Tex Registered Users
    Currently Being Moderated

    Think maybe you've got sympathetic GVH of the skin?   Sorry, I hope you're feeling better by the time you read this...you know, good enough to laugh.

     

    I'm thinking it's good when he gets junk out of his lungs but who needs a fever?  Let us know what's up.

     

    Blessings

  • 329. Re: Dean's latest challenges...
    Carrietaker Registered Users
    Currently Being Moderated

    Betsy,

     

    This is a long shot, but could you have just gotten a new washing machine and as a result have contact dermitis? 

     

    We got a new washing machine, a front loader, and I've learned not to put as much soap in the machine, plus I had to switch to the high performance (HP) detergent.  I've noticed that they have HP washers at MD Anderson but don't sell HP detergent in the gift shop.   Consequently people's loads look quite frothy.   Whatever the cause, I hope that you have had some relief.

     

    I also hope that Dean's fevers have subsided and that both of you are resting comfortably at home.  You both certainly deserve some quiet time.

     

    But if you go to MDA, please indicate so as I'd like to meet you.

     

     

     

     

    Carrie

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