Day +11: Some days are great days and others…..Not so much.

So yesterday was a big day!  We got our big dose of Rituximab!  That was supposed to kill of what little B cells might still be lurking in our immune systems, reaking havoc!  So we had the infusion, and it was a long one! I think I mentioned that it kicked my butt, and I spent most of the day sleeping and napping.  I certainly did not think I would have any problem in the sleep department last night at all.  In fact, I expected to wake up this morning refreshed, and ready to take on the world! Well, that might have been a bit premature.

Like clockwork, this morning I awoke to an infusion of steroids.  I also had some pretty severe bone pain, so I asked for some pain killers and was given them immediately.  That seemed to do the trick!   The only problem I could see was that I was exhausted and could barely move.  I mean seriously, I could barely walk.  I was doing the “furniture surfing” thing,  just to keep from falling over.  I was using grab bars in the bathroom and shower.  It was so crazy.  When Dr. Federenko came to check on me, I mentioned it to him.

He explained that they were reducing our steroid infusions and that could be the reason for the weakness.  Apparently it is not uncommon.  My other team members seem to be having similar experiences.  Wow, just not what I expected.

So this is how my day pretty much went.  Had breadfast.  Took nap.  Had shower and got dressed. Took a nap.  Had second breakfast.  Took a nap.  Are you sensing a theme?  Everything I do makes me just so tired.  So I nap.  I guess that is a good thing.  I am in a hospital after all.  It is where I should be if I am not feeling great.  And no,  I did not get outside today.  Dr. Federenko recommended just walking the ward, which I have.  But tomorrow, I am getting outside if it’s the last thing I do!

There is a lot to look forward to tomorrow!   My dear friend Barbie is flying in from Florida to prepare to take me home!  The original plan was that Dan was going to bring me home.  But with his surgery happening so close in time, it just was not practical.  I didn’t want to impose on Barbie,  but she jumped at the chance and she is up to the task!

She is my best friend.  We have known each other or about 8 years.  And yes, I know it is shocking to those who know me, we met at Walt Disney World, while on vacation.  It was pretty funny when I introduced her to Dan.  I said to him, “she is exactly like me!….Only better!”  He just laughed and rolled his eyes.  And pretty much since that trip, not a day has gone by that we don’t at least talk on the phone.  I am lucky to call her friend.

So no, I’m not going home tomorrow.  But she arrives tomorrow, and that will boost my spirits immensely.  Also, the last of the central line, “my octopus” will come out!  Now, don’t get me wrong, I am totally over,  the whole line in the neck thing.  It has actually turned out to be a bit of a blessing.  They can come get blood from me without waking me. They can give me meds through it.  They can give me all the infusions I need as well.  But it is starting to get into the way, to I guess its time for it to go!  Im good with that.

So yes, today was a bi of a bad day.  But now its time to brush myself up and get ready for a new day.  A new day with a healthy immune system and big smiles coming my way!