I am with Mark always. He talks to the doctor, I talk to the doctor. He sleeps in ICU, I sleep in ICU. I am at his side, and yet I have been missing him these past few days.

The breathing has been so labored and painful that we had to keep him heavily medicated. He felt that he was suffocating all the time and every person knows what a nightmare this would be – so they began to give him anti-anxiety meds which brought about more sedation.

The drugged sleep battled with the discomfort and I think the discomfort won. If you quickly shrug your shoulders… do it now… and that is how each breath was taken, day after day.

Someone asked how he was doing. His response was, “Weary.”

Wow – weary is the word.

Yesterday morning they came and inserted a permanent drain. Just as with each thoracentesis there was immediate relief. They soon had their 2000 ml reservoir filled. Try to imagine a 2 liter bottle of soda being squeezed between your lung and your rib cage and you can begin to imagine that pain he has been suffering for a couple weeks. Now shrug your shoulders again. Ugh! Within 24 hours another 2 liters was drained. He was comfortably breathing and I was so happy that the second 2 liters wasn’t having to sit on his lung for a couple days until they could draw it out again.

Also – within a few hours the hi-flo machine was replaced by nasal cannula and he was oxygenating just fine. He was finally able to relax! These events were all great, so why am I missing Mark?

I am missing Mark because his cognitive abilities seem to have decreased along with the fluid on his lungs. For most of the day yesterday I was just waiting for him to wake up from the drugs – but the grogginess and confusion remained. There is great improvement today, but not enough to feel that we could talk. He is also incredibly tired. He hasn’t had restful sleep for about three weeks.

The team began to try and find a solution. Today it came to me that this was resembling the symptoms displayed while the brain tumors were all inflamed. The ICU doctor as well as our oncologist were in the room together and both agreed this was probably the case. They will take him to MRI soon and see what they can learn. Perhaps those steroids can turn things around again?

In the meantime – here is the reason I wanted to share that information.

Picture him laying in bed and dozing off in the middle of a thought that may or may not have made sense or been in context. That is about where he was during their visit. Mark was not a part of the conversation. Our oncologist began to express her concerns about whether or not to continue to try any sort of chemotherapy. She said that she knew we had all talked about it several times before and that Mark had always said that he wanted to be aggressive and keep fighting.

At this Mark opened his eyes and agreed. She questioned him further and he seemed very alert and able to express his desires. He wants to keep fighting.

Then he drifted back away.

I loved what I saw and heard! It was the most he has been engaged for a couple days – and it was just long enough to let us all know where he stands. I stand with him. I think that we will both know if and when we feel otherwise.

I was amazed that he would express this after all that he has just been through.

Fight! Fight! Fight! – as soon as he is strong enough…

Here is some good news – the fluid is slowing down – coming out at about 1/3 rate as before. It is also much less bloody – more like red Koolaid than thick, dark blood. Everyone is happy about this. The ICU physician thinks he may be able to return to the floor by tomorrow.