Finding the balance

I’m struggling.  Here we are coming up on another trip to St Louis for photopheresis and Rosie is having anxiety again.  She has not been able to sleep in her own bed since this all began in October. She has tried going back to her own bed but she always ends up coming into my room in the middle of the night.  Which then means I have to get up and move all her medical stuff to my room. We get a few days away from leaving for St Louis and the anxiety starts up again.  She wakes several times in the night either feeling like she can’t breathe or throwing up.  I’m not getting a full nights sleep and I’m sure that isn’t helping me have a clear head about all this. Sometimes I feel like this might be the beginning of the end. I have talked with the team in St Louis about taking out her port and putting in catheters that will allow her to get the treatment without need to be poked every time. At this point I think that might be the best way to go. That will require getting her on the OR schedule. I just hope we have time. She really doesn’t have time to wait.  I see her struggling to breathe and wonder if it is anxiety or her body attacking her lungs and causing more loss of lung function.  It’s been over a month since her last treatment and she has new white blood cells that have not been treated.  She had gained weight and was up to 76.5 lbs but is now back down to 74 lbs. Sometimes I feel like I’m fighting a battle I can’t win. I try not to compare before transplant to now.  I remember how sick she was before but remember all the things she still did.  Now she is sick in a different way but does so much less than what she did right before transplant.  The future is so unclear to me right now.  I don’t know if this is it, or if she is going to be able to have another chance. And is it the right choice to keep doing photpheresis if she isn’t going to try for a second transplant?  Trying to live a balance it all is very difficult.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s