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....