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.

Sleep

I have lost the ability to sleep. Joe is sick again and I can't sleep. His surgery went well, they removed 4 liters of fluid out of his belly and he can breath. They re-positioned the port so he can get belly chemo again. So what is my problem? I think it is the "again". I thought he was healed. We have had a wonderful year of only traveling to NY every three months to be told to go home for 3 more months. Joe was strong or at least he was up until July. Then very rapidly he started going down hill. At first I just noticed he was sleeping more...then the naps became more frequent. Then he started losing stamina in everyday activities like climbing the stairs. Then the belly kept looking bigger. But when we went back to NY and they took the scans we were told things still looked good. So why the decline??? What they didn't tell us, or maybe they did in the beginning and we forgot, was that this disease can hide. It can be back without showing up on any scans at all.  So here we go....the roller coaster has pulled into the boarding dock and we just climbed on....again.
We will be back on a chemo regimen in a couple of weeks. Hoping and praying to beat the monster back into submission one more time. The difference is that this time, upon Joe's request, the Dr clearly laid out what the end stages of this disease looks like. This time they told us that Joe should not put off doing the things he really wants to do. This time they reassured Joe that they would not let him suffer and that they can and will make him comfortable. What they heck??? Or if I were honest and young I would be saying WTF??? And so I have lost the ability to sleep.

Like Sands Through the Hour Glass

It has been 1 year since Joe took a chemo treatment....a whole year! In this past year he has gone on 2 fishing trips, served on 2 Emmaus weekends, bought and started raising a new puppy....he kept the house going, had a fence installed, bought a rental house and actually did a ton of work on the house himself. He split and stacked the wood for the wood stove and became "super grandpa" and babysat Elizabeth's kids once a week. It was so easy to put his illness behind us. The only reminders came when we had to go to NY for his check ups. Every time we heard, "3 more months", we were thrilled beyond belief. In our hearts he was cured and this was all behind us. Then in June I noticed he was tiring more easily. In July he was having difficulty going up and down the stairs and in August his belly was filling up with fluid again.
 We have been back to NY three times in the past six weeks trying to find an answer. Hoping for reassurance that "it's nothing" and "go home and take 3 more months".  Unfortunately that is not the case. He is full of ascites (fluid in the belly).  Elethia tried to drain it using his ports but nothing. We had no choice but to see the surgeon and he was the one that confirmed our suspicions. 
  All of a sudden the hour glass is back and the sand is running again. Did it ever stop....of course not. We all have an hour glass with the sand running....each one of us will come to the end of our time hear on earth. But I can tell you it is one thing to know this and another thing  altogether to have your hour glass set on the table in front of you.
 The amazing wonderful thing is that he has long out lived all predictions. We really do count our blessings. Does this mean we just pack up our crayons, grab the hour glass and go home? Hell...NO! We want more....selfishly we want more. More sand...more time. So we keep fighting. We are however running out of options. When the surgeon uses the words..."it causes me anxiety to think about cutting into you again" you know you are coming to the end of your options. Thank the Lord he didn't say no and is going to go in and attempt to reposition the ports. Those ports serve two purposes....it takes the chemo in but more importantly it drains the fluid out. With a belly full of fluid Joe can't breath well and most importantly to him...he can't eat. Quality of life goes down hill rapidly.
 So, here we go again.....come along please!

I can't believe I did this....

Well, here I am, blogging. Is this for real? I am pretty proud of myself for figuring out how to set this up.

So why a blog? I just want to be heard. I want to know that I am not alone in my journey. I want to know that there are others out there who are listening to my tales of joy or woe. You see I am a care taker. I added this title to my list of titles in April 2009 when my husband was diagnosed with mesothelioma. It is a rare form of cancer that comes from exposure to asbestos. His is even more rare in that it is in his peritoneum or his abdominal cavity. We have been on a roller coaster ride ever since. First we are told he only has a few months to live. Then we find a DR in NY who is having greater success with this disease so off we go to NY and there we find hope. Then the treatments begin and back on the roller coaster we go until finally one day in October a year ago when the DR told us that the treatments were successful and we could go home for 3 months. It has been almost a year since then, we have had 2 more visits where they said....3 more months. And then in July the symptoms started to return. We go back, they do the scans and there is a spot...but they said 3 more months so we thought we were still good. But the symptoms continued to worsen and now we are looking at surgery again. And I don't want to be alone....I want to know that there are people out there walking along side of me....holding me up in prayer.

Let the next phase of the journey begin....