May 12, 2012

Part two.

In addition to the "Whipple" procedure, the team at HUP did some other interim work and that helped me to feel a little better.
After the Whipple which took about 6 hours and required them to cut me open across my diaphragm, I was in a lot of pain and much discomfort. Since they had joggled my insides, my bowels were blocked up and I didn't go for a full week. When I did, it was painful and very uncomfortable. This feeling continued for almost a month afterwards.
Food tasted terrible and no matter what I ate, it felt horrible once inside me. This problem went on for the entire time of my recovery.
They told me they were sending me home and that I needed a caretaker, so I asked my daughter if she could find someone. She did, but when I went home, she told that that person had changed their mind and went on vacation instead.
On a side note, during the month before I went into the hospital, I had sold my home. I had lived there for 20 years and raised my kids, dogs and cats. This place really was home to me, but since my wife had died in 2010, it no longer felt right to be there. I listed it for sale 2 days before Christmas last year, and it sold to a young couple just starting out. I had done as much as I could to bring the place back into shape, including painting everything neutral colors, landscaping the yard, and other work inside the place. I left the kitchen and bathroom alone which would have cost me quite a bit to replace. I figured the new owners could do the work themselves to their liking.
I had been packing and getting rid of stuff since my wife got sick and it became obvious that she would never go home again. It was therapeutic for me as well as cathartic. It gave me a chance to go through everything in the house to relive memories both good and bad, as well as decide that I really didn't want to carry all that crap to my next destination.
One other thing is that I needed to make a clean break, so getting rid of the clutter allowed me to start over. It felt good and bad.
Back to the story:
Closing on the property was on the 30th, and my surgery had been on the 20th. I hadn't gotten out of the hospital by then, so I signed over power of attorney to my daughter so she could take care of any problems that occurred. None did, so she had an easy time of it.
I also asked her to move the rest of my stuff into a storage unit. I gave her a list of what I wanted to trash, but she pretty much ignored the list in favor of efficiency and getting the job done quickly. Many things unrelated were thrown into empty boxes, and they were all put into storage. 
I was offline while in the hospital, but had found a decent looking apartment that was close to my bus route before going in, so I asked her to secure it for me, which she did. I also had gotten a friend to help me move stuff around in the storage unit so that I was able to actually put my little red car in between and still close the door. It was amazing to know that all I had left after overfilling a 1200 square foot, 3 bedroom, 1 bath home with full garage....I could fit everything into a 15' by 15' storage unit and still have room for my car!

The hospital released me after holding me for an extra week. They held me because they knew that I had no one to take care of me. I had asked that they send me to a nursing home for recovery, but the insurance company refused to pay for that and I was left fending for myself.
The apartment was/is very nice, but I had gotten rid of all of my furniture. All I had left was a recliner/rocker, a few tables, and a twin mattress that I had bought after getting rid of my king size mattress. 
I had no food in the new place, and no energy to drive to a market to get it. I had little or no clothing. Not because I didn't have it, but because I couldn't take boxes apart to find it. The same went for dishes, silverware, and anything else that one needs to live. I was lucky to find toilet paper which I really needed badly because of my horrible situation.
I was able to go out to a restaurant and got eggs to eat, but was sick for hours afterwards. I bought some stuff at Wawa, but that didn't go down too well either.
My friend from Maryland called me the second day I was home, and heard me tell about how bad things were. He called me back after a few minutes and offered to take me in. His wife is a nurse and knows how to read the medical stuff. I have never felt good about doing something like that, but was desperate. So, after thinking about it for a few minutes, I called him back and we spoke about all the things I would need and how inconvenient it would be for him. I wanted to make sure he understood how bad things were for me. He agreed to help me anyway.
He offered to come and get me, but I wanted to make sure I had a vehicle when I got better to drive, so I told him I would try to drive myself. This was really a bad move on my part, but I was able to do it anyway. I traveled the entire 122 miles as carefully as I could. When I got there, I was unable to get out of the car without help. It took a few minutes for me to climb the stair into his house. I was able to recline on his over sized couch and that's where I stayed for an entire week. I didn't have the energy to climb the stairs to the bedroom. I didn't have my cpap machine downstairs, so I slept fitfully the entire week, but I slept. I hadn't gotten any decent sleep in the hospital because every two hours they wake you to do vitals or some other thing. This place was quiet and I was able to sleep whenever I needed.
They went shopping for me and bought me food that they though I would need, and I ate what I could, but a lot of stuff went to waste because what I ate one day, didn't always work the next.
I ate a lot of saltines. I ate waffles with peanut butter too. I could tolerate that almost all the time.
My bathroom breaks were timed when no one else was around because the disease made everything so foul that no one needed to be around it.
I hadn't shaved while I was in the hospital, but my hair had slowed down, so it wasn't so bad. I didn't have the energy or concentration to shave, or even shower. But, I had stopped sweating, so if you didn't get too close...
I managed to take a shower one day while my caretakers were out, and I shaved and that wiped me out for the rest of the day. Towards the end of the first week, they asked me if I needed help going upstairs, and I said I would try to make it myself carefully. They moved my stuff upstairs, and I managed to make the climb. The bed was heaven! I hooked up the CPAP machine, and lay down and was out!
I slept like a baby. I came downstairs after that in order to eat or watch TV. They put a chair out on the porch and once the weather got warmer, I was able to go and sit in the sun. That was heaven too. They are on the bay, so watching the different birds, seeing and hearing the boats, was great.
One day, I got directions to a Subway, I went and got a sub. It was terrible, but at least I went out.
I made progress, but it was very slow and I am not patient. I was frustrated, but I had to take what I had been given. 
These folks should be nominated for sainthood! They saved my life. I really believe I would have died if not for them.
I was able to connect to their network and got back online. I made contact with some friends who were closer to my home area, and they offered to take me in. I accepted their offer, and was able to make the drive to their home that Saturday. I thanked my friends for taking me in, and since I had learned what I needed from the first couple, was able to streamline things with the second, making it a bit easier for them.
They were able to travel with me back and forth to the storage unit where we moved some of the stuff to the new apartment, little by little. We also re-arranged some of the stuff, making it easier for me to find stuff.
The lady rode with me one day, and we went through boxes and arranged my new kitchen so I could find stuff. She also took stuff off the very top shelf, and lowed them down so I could reach them.
One day, she went with me to Wal*Mart so that I could do some food shopping. I was able to make it halfway through the food aisle before I got too tired and had to go back home. She came back with me the next day and we finished shopping.
My male friend traveled with me to Philly for my follow up appointment, and spent most of the time sitting in a waiting room. What a trooper!
Their home is log, which is absolutely beautiful. It sits at the top of a very steep driveway, and is very far out in the country. I spent hours just sitting at the window looking out. I didn't watch much TV, and the internet was not available to me, so I spent much time thinking and calming down.
We were also able to spend time every night saying prayers.
I lost track of time there, so I'm not sure how long I stayed, but I was able to decide that it was time to try to live on my own, and I got up one morning and did just that. 
We will talk about the present in my next post.

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