September 12, 2009

Night turned into day. And with day came stability and hope. Hope the medicals could kill the infection. Hope  the chemotherapy would work. Hope Marie would get better. It was truly the longest day ever. With stability came time to think. So many unanswered questions. What was the liquid that came out of Marie's head? How did she get an infection in her spinal fluid? If Marie did get out of the hospital, would she be able to function?

All those questions could wait another day. September 11, 2009 was finally over. It was time to rest.

the night passed

The minutes clicked off slowly as the seconds seemed like days. But they did turn into hours. Pacing, coffee, and watching made the night hours pass, until finally dawn broke. Marie's vital signs became stable. They were still low but they leveled out. Right then, the worst seemed to be over.

the night drags on

I didn't sleep at all that night. I just watched the monitor to see what the vital signs would do. Down they would go. Then up a little bit. Then up some more. Back down again. Marie didn't want to wake up. What the nurse explained was that sometimes the brain would decide what to keep going and what to shut down, as the body struggled to survive. All we could do was wait it out. The infection in Marie's spinal fluid was playing havoc with her vital signs and the brain was now going to decide.

the nurse

The nurse on duty that night came to my aid to make sure I understood what the doctor was asking me. She assured me that the doctors question didn't mean that anything necessarily was going to happen. But sometimes it's better to think about things when it's calm and quiet instead of an emergency. That all made sense to me, but I needed to talk it out so I called my mother in law.

the talk

Marie didn't look good and she was not doing well at all. All her vital signs were very low. It was late at night, of what had been a very long day. Now the doctor was asking me if Marie wasn't able to come back to a sufficient level, should they resuscitate or let God decide. I was not expecting to "make the call". It had all happened so quickly, I just wasn't sure I was prepared.   

end of the longest day

The oncologist came to the hospital after the nurse called. The biggest concern seemed to be the the heart rate. At least that's the number that continued to drop and drop. It started in the seventies, then went to the sixties, fifties, and thirties. The blood pressure continued to drop as well.  Then the oxygen became a problem. One by one the alarms went off and the doctor and nurse went to work, trying to get the levels up, or at least stable.

The day started with liquid on the pillow and got worse from there. Some time between 1:00am and 2:00 am the doctor approached me to have THE conversation.

back to today 7/25/10

Marie is confused today. It didn't start right away. It came on all of a sudden. At 7:30 tonight she decided it was time to get ready to go to work. Of course she hasn't gone in for a year. She got her drivers license, car keys and name tag, and told me her boss was expecting her. I was able to talk her out of it and she settled down to watch TV. Is it the tumor acting up? I don't know. 

the longest night

Marie had been hooked up to an  IV that was administering an antibiotic for the infection. She was pretty much out of it and I found myself walking the halls. At times I would sit in the visitors waiting room watching television and sometimes I would sit in Maries room watching her sleep. I was tired but not sleepy and I kept drinking coffee.

Her monitor had alarms set so if a particular vital sign would drop too low the alarm would go off. The machine was watching the blood pressure, oxygen level, and heart rate. As the night wore on the monitor would register one of the levels too low and the alarm would sound. Then the nurse would check Marie and the machine. Sometimes the level that set off the alarm would go back up and sometimes the nurse would reset the machine to accept a lower level.

This went on for some time. It seemed like each time the level went back up, it didn't go as high as it was before, but high enough to turn the alarm back off. This scenario went on, over and over until the levels were getting low enough to really concern the nurse. She decided to put a call into the doctor. 

the longest day

This had been a long day already. Marie awoke with liquid on her pillow again. She went for a topotecan treatment that morning. It was difficult to get her out of the car because she was so disoriented. We talked to a nurse about Marie's generally bad health and the possibility of a social worker. We were called to alert us of a possible MRI ,so stand by. Then a call about an infection in Marie's spinal fluid. And now she had been checked into the hospital. I wasn't sure what else could happen, but at least Marie was going to get medical care now. She was placed on the oncology floor because it was an oncologist that admitted her.

After making Marie comfortable and hooking her up to machines to monitor her vital signs I sent my daughter and mother in law home to get some rest. I was going to stay in the hospital room with Marie overnight.

checking in

I went home and told Marie that the doctor wanted her to go to the hospital that day. We went together and packed a bag for each of us. We went to the hospital and checked in. They were aware that we were coming and the registration process didn't take that long. Marie was put into the chemotherapy ward which was in an older part of the hospital. Even so the floor was neat and clean and the nursing staff was some of the best I've seen. The reason I felt that way wasn't for their medical skills, it was for how gently they treated Marie. They made her comfortable and were reassuring.

putting back the groceries

My mind wasn't comprehending what the nurse was telling me. I needed more information. I asked the nurse what I should have Marie bring, and she told me whatever makes her comfortable when she is in the hospital.

They were meaning to keep her overnight. I explained that I was in the grocery store and that I would have to go home to get Marie. The nurse told me to go to the check in desk and that the doctor would meet us at the hospital. I knew what she was telling me but I just wasn't getting the seriousness of it all. I still can't believe it, but I took the time to go back through the aisles and put the groceries, that were in my cart, back on the shelves.

what?

It was a nurse on the phone. But it was a different nurse this time. Of course I asked if she was calling to give me an MRI time. Her voice was slow and calming. What she had to tell me had nothing to do with an MRI. The doctor had taken blood from Marie that day before her chemotherapy. After hearing my concern over how poorly Marie was doing, she decided to have the blood tested for more than the normal things. The nurse told me that Marie had an infection in her spinal fluid. I needed to bring her into the hospital right away.

What? She has what?

yes still 9/11/09

After I brought Marie and her mom home I decided to go to the grocery store. The nurse at the doctors office told me to be available in case they wanted Marie to go in for an MRI. I believed that we had plenty of time before that happened. So off I went to get supplies. I was shopping and figuring out the meal plan when my cell phone rang. The caller ID showed it was the doctors office. I answered it. I was fully expecting to hear that Marie was to have an MRI done tomorrow or the next day.

action

So we went home thinking that help would soon be on the way. The telephone rang. It was a nurse form the oncologists office. She told me that what I had described in the doctors office, about how Marie was acting, didn't sound right. She told me to stay close to home and available to bring Marie in for an MRI. The doctor was concerned about what I had said and might want to see if something is going on in the brain. I should expect a call in a couple of hours. Finally some action.

expensive

Marie received her treatment while I was talking to the nurse. When the topotecan injection was done we went home. I was somewhat upbeat because I was now expecting a call from a social worker. I really did think that would solve all our problems. At least the part about me going to work because Maries' mother needed to go home. You have to remember that Maries' dad had died just a month earlier. Her mother came to help soon after the funeral. She needed to get back home and take care of things there. I had to go to work. Marie had been out of work for two months. Medical treatment is expensive and the regular bills keep rolling in.

what was I expecting

I really don't know what I was expecting from the nurse or a social worker. I guess that I thought that the medicals would want to figure out why Marie was so non responsive and confused. And I thought that a social worker would help us obtain help for Marie. In my opinion Marie couldn't stay by herself. I needed to go to work and Marie needed in home care. Surly, this must have happened to other people in the past. There must be programs to help. We pay our taxes and we have contributed to charities. A social worker would know what kind of help we needed and just how to get it. Right? 

still 9/11/10

When we got to the doctors office and Marie went in for treatment, I talked to a nurse about Maries' general health, and my concern about leaving her alone. I must have difficulty, at times, explaining myself because I didn't feel I was getting anywhere with the nurse. We talked about a social worker but I found out, that this office, no longer has a social worker. They do though, use the social worker from the hospital when needed. The nurse told me that she would leave a message for that social worker to give me a call.

9/11/10

Marie was scheduled to have another topotecan injection that day. Getting her ready to go was slow and difficult. She needed help getting cleaned up and dressed. She couldn't do much of anything on her own. She just wanted to sleep. I planned on talking to the nurse that day about a social worker. My hope was that a social worker might be able to guide me in getting help for Marie so that I could still work every day.

It had been just a few days since we first discovered what we thought was a fluid leak. Maries' overall condition was deteriorating. She went from confused and disoriented to almost unresponsive. No appetite, throwing up, difficulty in waking up. She couldn't dress on her own. We needed help and I was hoping to find some.

case manager

It was during this time that a person called our house and told Marie she was her care manager for our health insurance. At least that's what I was able to get from my mother in law, who heard Marie on the telephone. We really weren't able to get much from Marie about the call because of her memory problems. I decided to get a hold of the insurance company and track down the caller. It took time but I was finally able to locate the person who called. She was assigned to be the manager for Marie's case. She told me that she had talked to Marie but it hadn't taken very long before she realized that something was wrong. Marie had been confused to the point that the manager knew something was amiss.

I told her about my concern in leaving Marie alone and she suggested that I talk to her doctor about contacting a social worker. That seemed like it made sense to me.

9/10/09

This day was much like the day before. The morning starting with a wet pillow. There was less liquid than other days but still a significant amount. Maries' behavior was continuing to decline. It was very difficult to wake her up. She was confused and disoriented. My mother in law was scheduled to go home soon and I had to work. I was very concerned about leaving Marie at home alone. I was convinced that we we needed help.

don't bother me

What I'm about to talk about next will take a while. I still can't believe the things that happened. It's what make this nightmare a reality. I'm not sure if we would have done things differently, or if we even could have. It certainly separated those that care about the plight of others, and those who think your problems are your problems, so don't bother me.

9/9/09

At this point Marie had done three chemo injections into the reservoir in her head. She had also taken a total of nine nights of temozolomide capsules. This was a week where she was getting both types of chemotherapy. Since this was all pretty new to us we just didn't know what side effects to expect. We did have all the literature about the normal side effects and Marie was doing great in that regard. But what we were seeing was not in the normal range of side effects.

Marie was being distant, almost non responsive. She was sleeping a lot and was very difficult to wake up. The confusion and disorientation was getting much worse. Then there was the fluid leak, or whatever that was. If it was sweating it was in very large volumes. Nothing any of us had ever seen before.

That afternoon my mother in law and my daughter took Marie out to lunch. After a few bits Marie threw up. We passed that off as a reaction to the chemotherapy. Oh, and by the way, when Marie woke up that day, her pillow was covered in liquid again.

back to the story

We left the surgeons office disappointed that he couldn't find a leak and went to see the oncologist. Don't get me wrong we didn't want there to be a leak, but we were sure there was one. When we met with the oncologist she also looked for a leak, couldn't find one, and offered the same possible explanation about sweating.

I asked if it was possible that instead of sweating or a spinal fluid leak, could it be the topotecan running back out. No one thought there was much of a chance for that to be happening. It was decided to continue with the treatment and Marie received her injection that day.

still today

Without going over the results of the MRI yet, it was decided to continue the chemotherapy treatment as it currently is. Marie will have two more regimens of topotecan and then another MRI.

back to today 7/6/10

Last night Marie had her MRI. The purpose is to see if the chemotherapy is working. In a couple of hours we should know.  I know the plan is to continue with the chemo treatment as long as it's doing some good. Waiting is always the toughest thing to do. It's when the time moves the slowest.

 

he's done

We were sure there was a leak of some kind, but the doctor couldn't find any evidence. Marie was supposed to have a topotecan injection that day in the same building. While we waited, the surgeon called the oncologist to discuss the situation. Obviously my mother in law and I could tell the doctor didn't find the leak. We decided to give it another try when he returned.

When he came back to the examining room, the doctor told us that he explained everything to the oncologist and that it would be okay to have the chemo treatment. Maries' mother tried again to tell the doctor about how much liquid was on the pillow. I asked him if it was possible that the leaked only occurred when Marie was laying down.

The surgeon backed out of the room saying that he didn't find any leak, and if there was nothing else..... Then he was gone. We sat in the examining room looking at each other. My mother in law was mad at herself for not bringing the pillow to show the doctor. I told her that we had done a good job of explaining what we had seen. And I guessed it was time to go.   

the surgeons office

When we arrived at the surgeons office they took Marie right in to see the doctor. If there was a spinal fluid leak if could be very serious. We all went in for the examine, Marie, her mother and myself. As the doctor looked over Marie scalp we tried to describe what we had seen. How much liquid was on the bed and pillow. The streams running down her face. I know he listened but the fact was, nothing was running down her face now.

Unfortunately his best suggestion was that she may have been sweating. My mother in law tried to explain how much liquid was there. The indentation in the pillow, where Marie laid her head, had so much liquid there was an actual pool. When she sat up her hair was matted to her head and liquid appeared to me, to be oozing from the top, around the surgery scar. 

busy day

The was to be a busy day, I was supposed to go to work for a while and then return to take Marie to an oncologist appointment. She was supposed to have another topotecan injection that day. Now I was taking her to she a surgeon because I believed that spinal fluid was leaking from the top of the head. But how could that possibly be. In order for it to leak out of her scalp, it would first have to get through the skull. At least that's what I thought. But I've never heard of that happening.

On the way to the surgeons office I noticed that no more liquid was running down Maries face. I think the leak stopped. Maybe it only leaks when Marie lies down. Like an open bottle, nothing comes out until it tips over.

full moon tuesday

I commented on the moon Monday night. It appeared to be a full moon, bright and large in the sky. My memory is that we laughed about it being an omen of things to come. But I never dreamed it would mean finding my wife soaked and in a pool of some sort of liquid.

When the doctor came on the phone it sounded as if he hadn't been up very long. I explained the situation and gave the doctor my best guess. The spinal fluid is leaking out of the top of her head. It appeared to me to be coming from the area of where the surgery stitches were removed. He wanted to see Marie that morning at 9:00am.

this just isn't right

Something had to be wrong. I have never seen that much liquid on a bed pillow before. On closer inspection I could see Maries' hair was wet. The spot on the pillow where she laid her head was soaked. An actual pool. Fortunately I was able to wake her up easily. When she sat up in bed the liquid ran down her face in streams. The pillow, and the surrounding area on the bed, was saturated. So much so, it looked as if someone had emptied a full pitcher of water.


My mother in law awoke from the commotion and helped Marie change and to dry off. I called the surgeon that had removed the stitches. It was early in the morning, so I got an answering service. After listening to my story,  the service put me on hold, while they contacted the surgeon. The whole process went quickly and it was just a few minutes until the surgeon came onto the phone.

tuesday september 8, 2009

The morning of September 8, 2009 I was up early. Marie was scheduled to have another topotecan injection later that day. I was going to work. I would be home early enough to take her to the oncologist. Since I had been having some trouble waking her up, I decided to check on her before I went to work. Our bedroom was still fairly dark at that time of the morning, but I was still able to make out what appeared to be liquid on her bed pillow.

I turned on the light to get a better look. I could not believe what I was seeing. There was liquid. A lot of liquid. I actually looked up to see if the roof was leaking. I don't know why, it wasn't raining.