The Results Are In. Drum Roll please.......

Dr. Litton called me tonight about 6pm.  I was glad to get the call from him, but felt bad that he was still at the office that late.  Since he was so busy one of the midlevel's looked at my scan and the radiologist's report.  It talked of pneumonitis, pneumonia, atelectasis, pleural effusions - so naturally anyone would think that my breathing problems were related to all those lung issues.  Unfortunately - even though that's what it looks like, Dr. Litton and Dr. Call have believed all along that it is my disease.  I don't have normal lung nodules like most lung disease looks like...mine is in the lymph in my lungs so it can look like pneumonia, pneumonitis and atelectasis.  Of course the pleural effusions are what they are and are getting a little worse, but so is the rest of the disease in my lungs.  No wonder I can't breathe.  It also doesn't help that my hematocrit and hemoglobin are dropping.  I'm not low enough to transfuse yet but all these things add up to not being able to tolerate any activity without becoming short of breath.

Anyway, getting back to the call....one of my favorite nurses Deann (she actually saved my life when I had an anaphylactic reaction to Taxol) she called earlier in the day and let me know what the midlevel's said about my scan and if my symptoms get worse to call and come in to be seen. I explained that Dr. Litton wanted to compare my scans and see if things were progressing...explained that my disease looks like pneumonia etc, let her know that my tumor markers had doubled and my breathing was worse than before I started Xeloda 2 rounds ago. She let me know that everything was making sense now and she would get all the info to Dr. Litton so he could let me know what was next.  I think that since he was on call and out of the office last week, he never really saw all my xray's and scans because the midlevel's try to manage those things when docs are out of the office.  With my weird issues and looking at a patient's chart they have never seen or talked to, there was no way for them to know what we were watching out for.  So finally Dr. Litton was able to look at all my xrays, scans, and labs...combined with my worsening symptoms things don't look super awesome right now.  He has decided that it would be best to start IV chemo...Abraxane in conjunction with my Xeloda.  They have a synergistic effect, so the hope is that we can get my lung disease under control.  He knew this is not what I wanted to hear - I told him I hated that plan, but knew we needed to do it. I love him.  He was so understanding on the phone.  I'm sure it can't be easy to deliver bad news day in and day out...especially because I'm probably his favorite patient.  ;)

Abraxane...it is the fancy name for Taxol bound with protein to help lessen reactions.  Last time I had Taxol - it was mixed with a solvent that is famous for causing reactions...and thanks to the nurse curse of course I had a reaction.  I almost stopped breathing...period...it was one of the scariest things I've experienced.  Talk about impending doom...I'd heard about that, but unfortunately experienced it first hand.  It makes me nervous to start this drug - but hopefully I won't react since it is bound with protein now.  I have been so lucky to be on oral chemo for the last 6 months - I'm so sad that it isn't working.  Just thinking about starting IV chemo makes me nauseous and a little gaggy.  I'm going to need to have some serious mental revving up before I start....and maybe some ativan....a lot of ativan.

This also means I have to get a port again.  My veins suck, and I will be getting Abraxane once a week for 3 weeks and then off for a week - so a port is really needed. I will find out more tomorrow about when this will be scheduled and when I start chemo.  The office was closed when Dr. Litton called, so his staff will work on it tomorrow.  I'm not sure I'm ready to lose my hair again so soon...or my fingernails...or my toenails.  My sweet friend Alexis took me to get a pedicure tonight - it will probably be the last one for a very long time.  I guess I'll have to go find the box that has all my scarfs and wigs in it...I have no idea where it is.  Maybe I'll shave something crazy on my head before all my hair falls out.  If anyone has any good ideas, let me know.  You only live once...right?!

I guess that's all for tonight...I don't have the energy to add pictures, it was all I could to to get this information out of my brain.  I guess that makes this real now.  More to come...

Be brave, my heart.  Have courage my soul.
Tiffany