I would lose my job

Then it all changed again. No more talk about the other coat. Marie just didn't want to go back to the day care. She began to know when it was adult care day. Instead of getting screamed at in the parking lot, I was now having trouble getting Marie dressed. She was refusing to leave the apartment at all. I would argue with her that if I didn't get to work I would lose my job. That worked for a while. But not very long.

living in some other world

I really didn't know what to do. Marie seemed to be living in some other world. Was it the medication or the tumor? Could it be something else all together? We were getting close to having another MRI. I was hoping that would tell us what was going on. I decided that if things didn't get any worse, I would talk to the doctor when we had the results of that MRI.

strange behavior

The next time I brought Marie to the daycare I had a conversation with the workers and asked them to let me know about any strange behavior. I explained about the "other coat and the staircase". They assured me that they would keep me informed but told me that Marie had been having many experiences like that recently.

all very real

One of the workers came out of an office and asked us what we were trying to find. I explained about the supposed staircase. She assured us that there was no other stairs and the only thing upstairs were nursing home residents. Marie shook her head and insisted. I tried to tell her that we never brought any other coat here but she didn't believe me. This was all very real to Marie

upstairs

It was like any other day that I picked up Marie except she insisted that we needed to go up stairs and get her other coat. walking down a hallway after she was released Marie guided me to an area that we had never been before. It was a dead end. Just the end of a hallway. But she insisted that there was a staircase that would take us upstairs.

strangeness

Just as I began to feel that things were improving with the daycare the strangeness started. I went to pick up Marie after I left work. I always went inside and retrieved her coat from the closet before going to the room where the attendees were. they were not released before someone came to pick them up.

feel comfortable

Things calmed down about going to day care just as suddenly as they had started. Marie was not fighting or screaming in the parking lot. It was almost like she wanted to go. I was hoping they she was making some friends and beginning to feel comfortable.

moving

I went to work that day with my hands shaking. I was talking to myself in the car while I was driving to work trying to figure out what I was going to do. How could I keep her home if her memory was so bad? How could I stay home from work? We couldn't afford that or in home care. I began to think about moving. Going to where family was. But would they help anyway?

she trusted the nuns

It became difficult to get Marie out of the car and into the facility. She would hold her hand over the seat belt fastener so I couldn't undo it. When I did talk her out of the car she wouldn't want to go into the building. One time she actually stood in the parking lot and began screaming. It was so bad that one of the Nuns came out to help guide her inside. She trusted the Nuns but she still didn't want to be there.

didn't fit in

Going to adult day care worked at first but it deteriorated quickly. Even though Marie couldn't remember where we were going each morning, when we arrived at the day care facility she became more and more hostile. She didn't like being left there and she just didn't seem to fit in with the much older attendees.

leave a comment

Hopefully you are now caught up with what's been going on lately. If there are any questions then please leave a comment so I can explain. In the meantime I will try to pick up the story where I left off.

different side effects

Marie finished her first twenty-one day regimen on 10/25-10 and she will start her second regimen on 11/1/10. I am still unclear about how many regimens that Marie will have with this medication before her next MRI. My daughter and I are watching for different side effects. Ones that may indicate that the tumors are not responding to the medication and that the tumors were growing. Our concerns are an unstable balance or a seizure where she could fall and be injured.

side effects

The acne medication has dried out Maries skin and she has developed an extreme case of chapped lips and skin patches of eczema. Obviously the chapped lips and eczema are annoying side effects but they are not dangerous. The high triglycerides are much more of a concern if they can not be controlled. Other than these side effects Marie appears to be handling this medication well.

blood test

On the fifteenth day of Maries first twenty-one day regimen, her blood was tested. It was found that her triglycerides were extremely high. The doctor has now prescribed a medication to help lower the triglycerides. We'll see how that works during her next appointment in November.

twenty-one day regimen

Marie is currently taking a medication that was being used primarily for severe acne. Md Anderson has had some success with this medication for some brain tumor patients so they felt it was reasonable for Marie to try this treatment. Our oncologist in Omaha agreed so here we are. Marie started taking the medication on 10/5/10. It's a twenty-one day regimen with seven days off in between.

back to writing

I realize it's been over two weeks since the last post. I just didn't feel like writing during that time. Things definitely happened and I will catch you up before moving on.

better

When Marie was finally off the steroids, things became better for her. She began to lose weight and her memory actually improved slightly. There was still confusion and memory loss but it was slightly better.

eliminate the steroids

The therapy sessions that Marie would go to were intended to help her with memory and stamina. Don't get me wrong, the therapist were professional and caring, but it just didn't seem to be doing any good. Maybe it was, but I didn't see it. As long as Marie was on the steroids I questioned how she could improve her stamina if she couldn't even put on shoes. I decided to ask the oncologist about her getting off the steroids. Fortunately he agreed to take her off the steroids. She couldn't just stop taking them. It was a program that lasted a few weeks where she would take less and less until she was finally off.

it was workable

Each day that I took Marie to daycare it was the same story. She didn't want to go. By the time we got in the car she had forgotten where we were going. When we got there and she realized where we were, she wouldn't want to go in. By the time I got her inside, she had forgotten that she didn't want to go in. It was workable. I could live with that. I needed to work and she needed a safe environment. I began to count on her memory loss. But it felt wrong.

recap the story

In November 2009, Marie had been out of the hospital for a month. She was in the hospital for a month because of an infection in her spinal fluid which, could have gotten in from an unhealed scar on her skull created from brain surgery in August 2009. Now she was confused with extreme memory loss. Her body was so swollen from steroids that she could only put loose slippers on her feet. A loss of strength and stamina meant she couldn't be left alone, so she had to attend adult day care when no one had a day off to be with her. Then she had to go back onto chemotherapy because there were no other options left for her brain tumors. And this was the good stuff.

10/09/10

Today Marie will be on her fifth day of her new treatment. So far no signs of any side effects. That's one thing about the warning of side effects, they never tell you when they could happen. Just that they could happen. I always wondered if anyone with a brain tumor ever thought that they shouldn't take the treatment because of potential side effects.

back to today 10/6/10

Yesterday Marie started her new treatment. Twenty capsules a day. Three weeks on and one week off. This will last two to three months before the next MRI. New treatment comes with new hope.

reality

As crazy as it sounds, people can get used to so many things. We settled into a routine and it became our normal. Early morning and get ready to go. Off to adult daycare. Put in a full day of work and then to the daycare to pickup Marie. Home to make dinner. Have Marie take her chemo pills and then to bed. On a day off, go to therapy sessions, maybe a doctors appointment, home to take pills, and go to bed. This was our life. It was our reality.

stress

It takes a village. That's what they say about raising a child. But it can be the same thing for someone with brain tumors. There's just so much to do. Marie needed a full time person to take care of her, but there wasn't one. We live hundreds of miles away from family. Finances dictated that we had to work. Even placing Marie in a nursing home would have been a temporary solution before that benefit ran out. So it was up to my daughter and me to take the bull by the horns and get through this. Unfortunately it didn't take long for the stress to start making cracks.

that was it

Stamina was the issue. Over a very short time Marie could motor along. Then without warning her strength would be gone and she would go down. We couldn't leave her alone. We didn't want her to get hurt. I was hoping the occupational and physical therapy sessions would help. So we spent our days going to daycare, coming home from daycare, going to therapy, going to doctor appointments and that was it.

movie and a wheel chair

Marie had no strength in her legs and couldn't get up. I tried to help her but she was dead weight on the ground. Here we were in the middle of the movie theater, filled with people, and I couldn't believe that I got us into this mess. I had to get help from some of the other patrons and theater personal to lift her up. The theater people get a wheel chair and we set Marie down. She didn't want to leave. So she sat in the wheel chair and watched the movie. All I did was worry about getting her home. Marie actually enjoyed the movie and her night out.

too much too soon

During this time I decided to take Marie to a movie. I thought it would be good to take her out and be part of normal daily like. Being taken to adult daycare was making her feel less than an adult. Unfortunaltly her physical well being was not ready. Shuffling in her slippers, off we went. The walk from the car into the theater turned out to be more than Marie could handle. When we got to our seats Marie was unable to push down the seat cushion and she ended up slumping down onto the floor.

taken care of

The workers are the daycare were great. Compassionate and comforting. The attendees would get breakfast, lunch and an afternoon snack. There were daily activities and sometimes outside entertainment. These people were not plopped down in front of a television set, there were taken care of. They even had things like pottery class, card games, and sing a longs. Marie was not outgoing at this time because of her cognizant difficulties so the workers would encourage her to participate in things and would help her get involved.

struggle

Each day was the same. I would wake up Marie get her breakfast and help her get ready to go. And each day she would tell me no I don't want to go. It was a struggle to get us both ready and out the door on time but I didn't see an alternative. When we did get in the car and were on the way Marie's attitude would change. By then she had forgotten where we were going.

back to the story

We were talking about the adult daycare. It was difficult to get Marie ready for daycare. She had taken steroids for so long that it affected her physical nature. Marie's feet were so swollen that we couldn't find shoes to fit. She was forced to wear slip on scruffy slippers. Nothing else would fit.

today 10/2/10

The medication is on the way. Right now our plan is to start on Tuesday. Finally a beginning of the next phase. Let's hope for positive results.