Coming Home

The last few days in the hospital were loaded with anticipation.  I would carry my iphone with me and wait for the calls from the nursing staff because Phil had directed them to call me about all of his medications because he didn't trust himself to make any decisions.  I would run up to the hospital at a moments notice hoping to catch the doctor with his surprise visits.  We never knew when they would come to give us an update.  Will he come home today, this week, next week?  It was always on our minds.  I had tried to wheel hubby outside in a wheelchair just to test the waters the second week of his stay and also had a visit from our little dog Maggie Mae.  Both proved to be too much for him too soon. The third week, we had another visit with Maggie Mae and two trips outside which felt like a trip to the beach for Phil even though it was just a view of the hospital parking lot with Phil wrapped up in blankets and he was still cold.  Phil was able to stay outside for about 20 minutes and Dr. Davis actually found us on our outside adventure one evening and it was the beginning of the signing of our pink slip.  We were both feeling a little more confident about handling the pain if and when it appeared at home without the help of the wonderful family of nurses that we had grown so close to.  Leo was our favorite.  Even when he wasn't assigned to Phil, he came to visit.  His heart was big and he cared.

Maggie Mae going to see Daddy

The decorated entry

21 days after we had taken Phil to the emergency room Phil called me and said, "Come get me!".  But, I hadn't hung the Welcome Home Banner yet and hadn't put the finishing touches on the house!  My daughter Tara and I scrambled to find the perfect place to hang his banner and we tried across the stairs, across the front entrance, and finally ended up putting it on the fireplace.  We were sweating by the time we found a place where the tape would hold knowing all the while Phil would be tapping his foot wondering where we were. I had taken a couple of hours the Sunday before to play in the dirt and plant some flowers and plants and decorate the entry way in preparation for Phil to come home and prepare for all of trick or treaters.  I was excited but so nervous all at the same time.  Phil was ready and he wanted me there now!  I could feel him breathing down my neck and he was several miles away.  I wanted his homecoming to be perfect and I felt like I was getting ready for our first date.  I was almost laugh/crying.

Tara and I got to the hospital and Phil was dressed in his Kentucky gear, baseball cap and all.  The last few days of his stay he had refused to wear his hospital gowns and had worn the pajama pants and t-shirts that I had bought for him.  He had several visits from his buddies like Steve, Kevin and my brother Greg which helped lift his spirits so much.  One of the techs helped us find a cart to load up his stuff.  You would be surprised how much crap you accumulate even in a hospital in three weeks.  The cart was overloaded and we all had our arms full and Phil was rolled out with lap full of stuff too.  Me being the pack rat that I am, I was taking rubber gloves (I could use them to clean) and anything else that I thought might be functional that wasn't tied down that we had paid for.  I know, that is so stupid right?  Well some of those things came in mighty handy, can't say here what things did come in handy but they did!



The first night at home was a good night even though we had scrambled to get his medications filled and some were not available and getting out of the hospital at 7 p.m. made it almost impossible to get in touch with the doctor and get what he needed.  Since pain was what we feared the most, Phil panicked at the thought of not having his meds so we didn't rest until we had the minimum of what we might need to make it through the night.  The pharmacy didn't have the most important pill in the milligrams that we needed so they couldn't fill it and we had to go get another prescription.  It was a mess but he needed his morphine.  It was his lifeline.  Phil was happy to be home but he had a lot of trouble getting in and out of bed.  He was used to the hospital bed and had bars to hold on to.  We had a thick mattress which restricted his movements and he had trouble even rolling out of bed so he used the bed frame and the nightstand for temporary leverage. 

With his weakened state he was totally exhausted the next morning.  That morning we lined up all of his meds and I took out the pill organizer that I had purchased at Walgreens with a.m. on one side and p.m. on the other and we took out the list that they gave us from the hospital.  This is when I started realizing the huge responsibility of managing meds. I have to admit, I messed up a couple of times maybe three but cancer patients have a lot of medications to take.  Some to remedy other medications.  It's a vicious cycle and what's funny is when you go to a different doctor and they ask you to list the medications and you actually start rambling off big words like Dexamethazone, Thalidomide, etc.  HA!  I've got some of them down but here's the kicker, they've all got a couple of different names and then there's the generic name and then there's the chemo names.  I won't bore you with all of them because it means nothing to you or maybe it does but we got an education and we learn something new all the time.  Now I am not an organized person but you have to stay organized with meds or you are in danger so every Sunday, that's my morning job.  I take the little red Starbucks bag that we store all the pill bottles in that are labeled and take them out one at a time and put it in either slot seven times and then keep out the bottles that need to be refilled that week. 

After a couple of days, we got into a routine but the holidays were right around the corner and I had dread in my heart for the first time ever for both Thanksgiving and Christmas.  I just didn't have it in me.  I was driving home from a quick errand, they were always quick because I couldn't leave him for very long, and all of a sudden a wave of sadness, fear, anger, loss, confusion, loneliness, and basic devastation overcame me while I was driving.  I had not cried.  I pulled over about a block before our home and I just lost it.  I let it go and wept until I was sobbing and was very vocal about it.  It felt good. Sometimes you just need to let out a whopping, loud, crazy cry.  I hope no one saw me.  They would have thought I was nuts but I needed that moment of insanity to clear the path.