Stem Cell Transplant Day 19: I'm Home!!!!!!!!!!!!

 

I'm home!  I was discharged from the hospital yesterday about noon!!  Was I shocked when the Dr. told me Thursday afternoon that I could go home Friday?  Heck yes I was!!  When I asked when he was going to let me go home, I honestly expected him to say Monday.  So, when he said "tomorrow" I was shocked.  My sister-in-law was sitting with me when he told me, and I think she may have been even more excited than I was!!  I am so glad to be home.  Eighteen days in the hospital is a long, long time. 

  

I feel that I need to enlighten everyone on what happened during my last few days in the hospital.  It was not smooth sailing.  Not even close.  Last Saturday our good friends came up to visit, and when they were there, I was good.  But later in the evening, things went south pretty fast.  Saturday was day +5 (meaning five days post transplant), and 11 days after starting six strait days of high dose chemotherapy, so the crappiness that ensued was to be expected.  That evening I started getting sick, and so did the beginning of extreme abdominal pain.  Sunday was more of the same, only worse.  The mucousitis caused by the chemo was the culprit for all of this sickness and pain.  

Seriously.  This was my television.  And it didn't work half the time. 
 

I can't remember if it was Saturday evening or Sunday morning when they started the pain medication.  In any event, they were giving me dilaudid every four hours and it was helping.  Eventually I was needing it every three hours, so the decision was made to give me a pain pump so I could control the medication.  This was the beginning of craziness that I never, ever, ever, ever, ever want to experience again.  I will spare the details of the dosage amounts, but I am certain I was receiving way more than I should have been.  Then, at some point Monday or Tuesday the decision was made to switch to Fentanyl and to also give me Ativan.  Now, this was a problem for me because I had adamantly requested to not have Ativan.  I don't like the way it makes me feel and I just didn't want to deal with that.  But, the nurse insisted that it would help, and that she would give me half a normal dose and that if it didn't work to my liking I wouldn't have to do it again.  So, I caved.  Boy oh boy do I regret that decision.

What started happening was so scary.  I started hallucinating.  I was talking to people who weren't there.  I was seeing people who weren't there.  I was sending Jeremy strange text messages about our "new friends".  He tells me that at one point I told him to get the nurse and that she was in my bathroom.  He told me she wasn't, and even opened the door to prove it to me, but I insisted I saw here walk in there.  I would close my eyes for a few minutes and then sit up and start making incoherent statements.  I couldn't sleep at all Tuesday night because of the vivid images I was seeing and experiencing when I closed my eyes.  I was terrified.  Wednesday I told them to take me off all the pain meds.  They did and gradually things improved.  Wednesday night I was still seeing vivid images, but not as often.  Thursday was much better.  It was an awful, terrifying experience.  Jeremy tells me after seeing how I reacted that I would never make a good heroin addict.  At least I know that in advance.

 

They determine when to discharge based on a lot of factors, but the main factor is your blood counts, specifically focusing on the white count.  Mine had been gradually going up for a few days after completely bottoming out, exactly as it was supposed too.  My neutrophil count was a few hundred lower than they wanted it to be, but the doctor decided to let me come home anyway.  Thank goodness!! 

Me with my blood board.  Most exciting thing that happened every day was
seeing what numbers would be written on this board!

So, now I just have to be super careful to not get sick.  It will still be a few weeks before my white count is in a good range, so until then there will be lots and lots of handwashing taking place around here.  How do I feel?  Very, very fatigued.  I still have no appetite and food and drinks taste gross.  I still have digestive issues.  I have to be very careful to not get dehydrated, but this is proving tricky since I don't want to drink anything because it tastes so awful.  However, last night is the first solid food I have eaten in almost two weeks.  I didn't eat a lot but I did eat so that was a plus.  I had a shake this morning, couldn't do lunch, but did eat a little dinner tonight.  Every day is going to be a little bit better than the day before.  Hopefully soon I can eat and drink normal.  Until then I will just do what I can, sleep when I need too.  I will do my best to keep you all posted.   

 

Oh.  One more thing.  Just so you know, when they remove your central line, they don't numb it or anything.  They just pull it out.  Yikes!

 

Bald again.  This time, I don't care.  It started coming out in clumps and was everywhere. 
When I woke up and there was  hair all over my pillow, in piles, I was done.  The tech
shaved my head that morning.  It's just hair.  I know first hand it will grow back.