Thursday, August 29, 2013

More Ups and Downs, but More Ups, than Downs

The last few weeks have brought more ups and downs.  Ken, thankfully, has shown great improvement.  Powerful antiviral drugs have driven down the virus he was fighting, and I'm hoping the next time the doctors do a viral count, it won't be detectable.  He's been discharged back into the Cancer Lodge, and is doing better with each passing day.

The doctors are trying to reduce his anti-rejection drugs, to get them down to as low a dose as possible.  As awesome as the drugs are, there are serious side effects, so using as little as possible is in Ken's best interest.  Aside from that, there is also the cost - Cyclosporine (Neoral) is very expensive.  It comes in 25mg and 50mg capsules... and Ken is currently on 150mg twice a day (down from 275mg twice daily).

With the decreased dose of Cyclosporine and Prednisone, Ken is now experiencing Graft Verses Host.  This is a bad thing, in that Ken currently has a very uncomfortable, itchy rash and his new immune system attacks his body.  It is a good thing in that a) it's obvious, allowing the doctors to adjust his anti-rejection drugs, and b) in theory, his new immune system should hunt down and destroy any remaining cancer cells (I'm hoping that there aren't any, but if there are, I hope this GVH gets every last one).

I'm feeling very optimistic.

There have been times recently where I've been very unsure as to what the ultimate outcome was going to be for my husband, but now, I'm feeling very good.

Wednesday, August 7, 2013

Ups and Downs...

Better late than never with an update, eh?

The last month has been a total roller coaster ride.  Ken was discharged out of hospital and into outpatient care.  I traveled down to the coast with our boys to provide care from him - he required a lot of assistance.  All the drugs and treatments he's been on a part of his stem cell transplant protocol have left him weak and shaky, hardly even able to walk even.  Medication reactions left him severely dehydrated, which meant addition trips back into the hospital for fluid therapy.

And did I mention I had two toddlers with us all through this?  Needless to say, it was a very difficult trip for all parties involved.

Since then, Ken was doing ok, until he picked up a virus.  I'm not sure where he got it from - could be that he was exposed to someone carrying it, or perhaps he's carried it within his own body all along.  In any event, he became sick enough that he's been re-admitted into the hospital and put into isolation.  He may have pneumonia or worse.  On the one hand, I'm glad he's been re-admitted - there's no better place for him to receive care.  On the other hand, I'm scared that his discharge time to return home will be delayed, or (far) worse - he won't make it home at all.  So far, he has shown some minor improvement, and isn't having to rely on his oxygen mask as much or as often.  But he's still feeling pretty lousy, and is still restricted to his room.  We're awaiting the results on his chest x-rays, to see if there's been improvement since the last films were taken.  No word yet at this point.

Through this all, Ken is keeping positive, but more than anything, he wants to come home.  At the end of this month, it'll be a year since this journey began - a very long year.