A Day

Yesterday was way up there on the spectrum of "very bad days". And yet as I reflect back I can see the Lord's sprinkling grace all over it. I always struggle when we have to go to NY. For one thing, there is just no good way to get there. We have tried every way with the exception of flying. We started out driving the northern route through the mountains and staying in the city. Beautiful drive...no easy bathrooms...no easy Starbucks and staying in the city..... Then we tried the Turnpike...easy bathrooms...easy Starbucks...horrible drive. Then we tried going up on the Turnpike, back on the scenic route and staying in Jersey. We tried going up and back in one day. We tried going up the day before and back after treatment. And of course we have taken the train. The train is usually my favorite because I don't have to drive. You can rest on the train. You can potty on the train and you can read or facebook on the train. All in all it is better for me. Not so for Joe. He hates the train because it is such an ordeal to get from the car to the station then from the station on to the train and reverse that in NY....off the train...through the station and out to the street for a taxi. I can see his point, if I were the one sitting and waiting for a wheelchair while the conductor taps his foot, I would be less then excited too. Then when the redcap shows up everyone is on fast forward. Get him up...get in the chair...then take off like a bullet to get him up and out of the chair so you can help the next person. It is humbling to say the least. You are at the mercy of the kindness or lack there of, of a total stranger.
Well, yesterday we took the train. I am the sole driver now and I was anticipating the news we were going to get and it is hard to drive and cry at the same time so I just wanted to take the train. What a huge mistake! We missed our train at 6:13a so we had to take the Acela. I hate that train. It is uncomfortable and it moves so fast that I can't walk around easily. I look like a person who is 3 sheets to the wind. And Joe absolutely cannot get up on the train or he will end up on the floor. But there we were flying to NY. Of course when we got there, no redcap, no wheelchair. When he finally came he was of course in a big hurry and off we went. Usually, they will take us up to the street and out to the front of the taxi line. Not so this time. He stopped at the bottom of the escalator and left us off. We made it up and out into the pouring rain where we found a line a mile long waiting for the taxi. We could not just jump ourselves in the front of the line, Joe cannot stand for more then a minute and did I say it was pouring down rain. I had no choice but to get him back inside so I could ask for help. Fortunately the Customer Service office was right at the bottom of the escalator and we made it just that far. I sat him down and tried to explain our situation to the representative at the desk. What a nightmare! She immediately launched into her explanation that this is not her problem and that I should have brought my own wheelchair and that I cannot hold up her wheelchair because she needs it for other people. I calmly agreed with her and then asked for her assistance. Once again she launched into a tirade and once again I agreed with her for the future but how can I get help now. This went on and the tears started to flow which only seemed to enrage her even more. In the mean time....here comes a sprinkle....a lady from one of the offices behind the counter got her coat and went outside to find the taxi attendant. Then the mean lady told me to find the tourist information booth to get a special taxi number so I could call. While I was out racing through the mobs of people in NY Penn station I hear my name over the loud speaker so I race back. Here comes another sprinkle of grace....the original redcap came back and saw my distress and took us back out the to the street...ignoring the mean lady's protests. I completely fell apart in the taxi....the poor driver I am sure thought I was a lunatic....poor Joe is just beside himself because at this point I can't even breath. 
Now, all this and we haven't even seen Dr Taub. We went to NY so that Joe could look into the face of this man who has helped him live 2 years beyond anyone's expectation. He wanted to see him as he asked him if we are at the end of our partnership. I can barely type this as I think of how hard this meeting was for everyone. You think of Dr's as seeing so many people they can't possibly care about everyone but I believe this Dr does just that. The very first time we met him and he studied Joe's scans for so long and then came up close to Joe and told him quietly..."you are very sick man but I think I can help you", you got the sense that he really cares. Yesterday was the same. He came up to Joe and put his arm around him and told him he thought he might not get weaker but he would not get stronger. He looked in Joe's eyes after examining his belly and said he should go home for 2 months because at this point the treatment was making him sicker then the disease. In 2 months we will talk about trying a new combination of drugs to see if he could tolerate it. All of this is too help Joe end his life in the most gentle way possible. Alethia gave us a glimpse of what the end could look like if we leave this unchecked and it sounds pretty gruesome. So while the chemo will not help him get better, it could very well him die easier...if that makes any sense...which it did to us yesterday. She said their hope is that one day Joe will just go to sleep and not wake up and not suffer one bit. She said his body will just get tired of fighting.
And that is how we left it....God sprinkled grace all over that meeting. We hugged and smiled and planned for 2 more months. Joe felt better and I felt worse. He wanted the truth, I wanted a lie.
Not wanting to repeat the fiasco of the morning Joe called Bruce. Bruce is this amazing Limo driver who was my driver on my very first stay in NJ when we started this whole journey. Bruce would pick me up at the hotel and drop me off at the hospital in the morning and then come back and get me at night. He was a contracted by the hotel and we became family. We met his son and his wife and his nephew (who received a heart transplant by Dr Oz by the way). We lost track of Bruce when we started staying in the city and I became a subway expert. Yesterday he came and got us at the hospital and drove us to Newark. Grace was not sprinkling, it was pouring in that limo. Bruce talked to Joe like a brother, he prayed the blood of Jesus over him, he told Joe that he needed to put on his armor and get back in the battle. He told Joe that part of his armor was what he eats and how he treats his own body....whoa..I sat up then. He told Joe he was a covering for me and he needed to take that job seriously and get things ready for me and to continue to take care of me and his family. He put responsibility back on Joe no matter how sick he is....the whole time he was talking to Joe and talking to Jesus at the same time. Can you feel what I am saying here???? It was pouring in the Limo. He didn't even pray for a miracle for the future....he prayed for the miracle of right now. He didn't ask anything to be lifted or removed or even healed....he asked for Joe to get back in the battle. Do you hear me????? I just sat there in awe and silent with my mouth hanging open. I didn't even want to glance at Joe to see what was happening to him for fear he would be distracted by me.
I cannot tell you what happened to Joe. I know that when we got on the train...before it left the station he was asleep and 3 hours later when we were about to pull into Baltimore he woke up. Only the Lord knows what will happen from here....I am in this thing all the way and I am excited to see it unfold.