Bad Burn on LE arm & Out of Town-- Please HELP!

Thanks Binney, Crystal & Annette... 

It wasn't actually hot and lobster red like the arm was, but pink and warm.  Today when I woke up it was less pink and more blistered (like the arm is now).  Since my temp had dropped as of this morning, I was hoping this meant that last night's combination of rest, elevation and hydration (and taking the oral antibiotics on time!) was helping.  After reading your message today, though, binney, I did call the doctor on-call.  She thought that since I had had improvement since yesterday (she seemed less concerned with the blisters since I also had them all over my arm when they discharged me), I could use my judgment about going back in or waiting until I go back to the hospital tomorrow morning for my oncology follow-up.  I was feeling so crummy that I asked my Mom and sister to take my boys for the day so I could rest (and so just in case I did decide to go in, I wouldn't have to scramble for childcare). 

I'm not feeling as sick tonight, so I'm hoping the worst is behind me.  I will see what they say in the morning.  I'm sure that if they do want me to stay, I'll hear all of your voices in my head and won't hesitate to be admitted.  I'm actually going to pack a bag just in case this time so I don't have to spend the week in mesh hospital underwear again!  :-)   (I'm just kidding--I've actually grown kind of fond of those stretchy soft underwear and the no-skid socks!) 

Thank you once again for being there for me.  I'm hoping to ‘give back' at some point, but in the meantime, know that your support has really made a difference for me.

Hugs to you all (and to all who've helped me in this thread!)...  Good night...

Thanks, Binney...

Yes, I have a really hard time accepting help, so asking for it is definitely out of my comfort zone (which is seems to be a common trait here! ).  But I'm really glad I did.  I think it helped to have the luxury of a whole day to rest without feeling like I had to take care of the kids/husband/dogs. 

And today's appointment went well.  I just saw oncology, so I'm not sure what infectious disease would have said, but my onc thought that the newer areas on my back and chest aren't cause for alarm since the pinkness was almost gone today and it's just all blisters now.  She feels it is following the 'infectious process' my arm went through, but on a far less severe scale because it is being controlled by antibiotics.  The full length of my arm, from hand to shoulder was bright red, hot and shockingly swollen when I first posted.  Then when they finally got the infection under control, small fluid-filled blisters started forming (which are now large blisters that are bursting).  The arm looks kind of scary!  Anyway, the back & chest areas are doing the same thing--minus the redness and with a lot less swelling than I had in the arm.  So, I think she must be right about it being okay.  What a relief it was to be able to walk out of the hospital with her blessing today!

I was going to ask you, when do you think I should start wearing my sleeve again?  The onc really didn't feel confident enough to tell me when.  My PCP had no idea when I saw her on Friday.  And my PT (who is more of a PT than an LE therapist) hasn't seen it to this extent before.  You seem to be so much more knowledgeable about all of this than anyone in my medical circle, so I would really appreciate your thoughts.  I know I shouldn't put it on now, with all of the blisters and the bursting, but when is it okay to resume?  I've actually had it lightly wrapped in a gauze bandage the past few days because of all the oozing and each time I remove it, I can clearly see the effects of the LE with all of the impressions from the gauze and the indentations in the arm with even light pressure, so I'm afraid of waiting too long to start using compression again lest the LE get any worse.  All these things I wish we didn't have to worry about...  It's hard to remember what it was like to not have to worry about things that most people take for granted! 

Thanks so much for everything.  I don't know what I would have done without you throughout this process...  What a gift you are to bco.org and women like me!

Home again...  Thank you all so much for your continued hugs and support--I can't tell you how much this has meant to me!

Marple--Yes, I believe I'm on my 8th or 9th antibiotic?  They work for a time, but then it gets worse again...  They gave me Vancomycin as soon as I came back to my home hospital, but I had a nasty reaction to it, so they've been trying other drugs/combinations of drugs since.  Hoping this is the last time!  Thanks for the healing wishes.   :-)

Thank you, Becky & Crystal!   :-) 

Thank you, Binney!  I had no idea what a worthy adversary cellulitis could be.  I can't tell you how good it feels to know you are here educating women who don't know what they are dealing with--like me!!

Thinking of you all & grateful for your support...

xoxo 

Thank you all!!!  It has been another rough couple of days.  I can't seem to break this cycle.  It seems that after I've been home on oral antibiotics for a couple of days, the cellulitis gets worse again.  

I am beginning to feel like this is never going to end.  Cellulitis was not on my radar AT ALL before this--and now it seems to be almost all-consuming.  I was back at the hospital yesterday, but got to come home to wait for an appointment with another specialist.  My oncologist is concerned about keeping me on such a high dose of antibiotics for an extended period of time, but her PA and the infectious disease doctors say I should be getting IV antibiotics in the hospital.  The thing all sides seem to agree on is that there's some concern that I could pick up another infection if I keep getting hospitalized (they believe this all started because I picked up a hospital-grade staph infection when I had to have a hysterectomy/ooph in March & that it probably got into a small cut on my LE hand last month? Not sure what I think of their theory, but this is what they're saying).  Anyway, my blood counts weren't looking so good before, but they have gotten worse lately.  I'm neutropenic, my white count is in the crapper, and all the reds--hematocrit, rbc, hemoglobin have been dropping steadily.  I just had a transfusion a couple of months ago and my numbers are now lower than they were before the last transfusion.  And I'm wondering why.  I feel like I don't know what is going on with my body.  I thought a recurrence was the only thing I had to worry about, but now I'm just a little concerned that an infection might take me out.  I do my best to be really positive (this is really the only place where I'm not!!  Sorry!), but there have been some times in the past few weeks when I've been truly scared.  I can't tell you how fortunate I feel to be able to come here and be met with understanding and support--and the freedom to actually say what I'm thinking/feeling.  I am grateful for all of you!!

And Carol, what a nice post.  You put it so well.  Though I am still struggling with this rotten stuff, I am certain it would be much, much worse if I hadn't had such great information and support from the ladies here.  Yes, pats on the back all around.  And Binney is right, lots of chocolate for everyone!  

Big hugs to you all!