CML - Day Five

By day five of hospitalization, I am more than antsy.  I am ready to go home.  I want this thing out of my neck.  I want to be able to take a shower.  Wear a real bra.  Sleep for more than 4 hours without having my vitals taken.

There are murmurs that my release is eminent, but my oncologist dispels those.  He tells me to hang on for one more day.  His amazing nursing staff are trying to arrange delivery of my very expensive medication, so that there is no dosage interruption when I am released.  It actually hadn't occurred to me before now that I wouldn't be able to fill my prescription at the local Walgreen's.  He also tells me that they are working on funding to assist with my med costs, as my insurance will only cover approximately 90%.  So I'm doing some math, and get a flash of panic when I realize that without help from a foundation, my meds could cost me around $1000 a month.  Which I could swing.  For a month or two.  But not indefinitely.  Not for life.  And since there currently is no cure for CML, I'm looking at a life sentence here.  While I'm in the hospital, my medications are part of my treatment.  Thank you to my doctor for truly having my best interests at heart.

Again, no leukapheresis today.  I'm glad of it.  I'm starting to go crazy being tied down.  I'm wouldn't call myself a super active person, but I am used to walking at least half an hour a day, and the only thing that I've been able to do for the past 5 days is get up to go to the bathroom.  One of my nurses clears it with my doctor, and I take a walking tour of the ward.  It is not nearly large enough.  I go all the way down the hallway to the elevators, which I look at longingly, and then back down the hallway to the large windows at the other end of the hall.  It looks like summer outside.  It was persistently cold when I was admitted to the hospital.  I touch the tempered glass, and it's warm.  One more walk up and down the ward.  Keith wheels my pole, pulls the back of my gown closed, and makes sure that I don't collapse.  It's nice to have someone covering your ass.  In more ways than one.

Free at last!

So two days now without leukapherisis, and the nurse gets permission to pull out my catheter/line.  I cannot wait.  It's less painful than when it first went in, but I am so ready for it to be gone.  If I could sleep on my right side again, it would feel like heaven.  I get ready to have another procedure.  It did not go in without a bit of fanfare, so imagine my surprise when she cuts the stitches holding it in place, and yanks it out with one big tug.  And then tries to choke me.

Okay, no, so she was only holding pressure on my neck so that it did not bleed, but the pressure is pretty extreme.  And I am so grateful that it is gone I can hardly stand it.  It looks like I got bitten by a one fanged vampire, but I'm elated.

People are starting to get ready to get rid of me.  If all goes according to plan, I'll be discharged tomorrow.  I've already started to pack my things, which are few, but seem to be scattered about everywhere.

My nurse that night asks me if I have children.  She obviously did not get the memo.  I tell her that I do not, but that I do have a four year old niece.  She stresses the importance of being very careful with my chemotherapy medication (Gleevec) and tells me that I must be careful not to expose children to any of my bodily fluids, especially urine or vomit.  Specifically large amounts of urine or vomit.  Um, excuse me?  Why in the world is this something that she's telling me?  Don't pee or puke on any kids.  Um, check.  Got it.  I'll do my very best.

I wake up the next morning knowing that I need to stay calm.  They won't release me until after I've had my meds, which usually come in around noon.  I pick out clothes to wear.  This is the first time that I'll be fully dressed since I came into the hospital.  I wait for my WBC (white blood cell count to come back), and I'm down again to 242000.  Hard to believe that I was twice that when I was admitted.  My count has been coming down so slowly that I don't think I'll ever get to normal (between 4000-11000).  But if they think I'm okay to go home, I'm certainly not going to fight them on that point.  Look what such good care they've taken of me so far.  (In all earnestness.)

After I get dosed, I can't help it anymore, and I get up to give myself my last washcloth bath.  I can't do my shirt until they remove my ECG and iv, but I can put on underwear and pants.  Except I can't.  The clothes that I have chosen are not fitting.  I am fat! Retaining so much water that my legs are painful.  I feel like they don't bend right, like fatness is keeping them from fully bending at the knee.  My hips are far wider than I'm accustomed to...and maybe it feels like I'm being shallow and petty about it, but the truth is that it's uncomfortable, bordering on painful.  I lift up the little panel on my bed, and push the button that will take my weight.  It's in the 160s.  I'm retaining over 10lbs of water!  But there is no way I'm mentioning this to anyone until they've signed my discharge papers.  There is nothing that is going to keep me from getting out of the hospital today.  So yoga pants it is.

It of course takes ages between the promise of discharge, and the actual discharge paperwork, prescription's, instructions, excetera.  I've got my eye on the prize, though.

Keith shows up right on time, comes all the way in to get me, and then has to run out to bring the car up to the entrance to pick me up.  My nurse tells me that she is supposed to wheel me in a wheelchair, but agrees to let me walk while she accompanies me.

The car pulls up to the curb, and as I slide in, I sigh with relief.  I feel like the fight is over, but I suppose, really, its just beginning.