back to today 6/30/10

Marie had her blood tested again today to check the cell counts. Some were low and she was cautioned to avoid ill people and crowds. It was nothing unusual, just a caution. Next week is her MRI. Then we should have a good idea if the topotecan is working or not. The way I understand is to continue with this chemical, if it is working, or look for a new one if it isn't. But chemotherapy is still the treatment being pursued.

No use worrying about if it is or is not working. It's time to enjoy the 4th of July weekend.  

monday sept 7

Things were getting worse. Disoriented and sleepy. Hard to wake up. More and more unresponsive. Everytime Marie went to sleep I hoped I could wake her up. On this night, she was to start her temozolomide. I didn't want anything to interfere with the treatment. She had very little appetite. Marie was scheduled to see the oncologist the next day to have another topotecan injection into her head. I decided to give her the temozolomide capsules that night and to talk to the doctor about her sleeping issues and disorientation tomorrow.

The next day would change everything.

the next day

The next day was more of the same. Fatigue with difficulty walking Marie up. I kind of believed that the chemical was affecting Marie more than we thought possible. In one more day Marie was start up again on the temozolomide capsules. Two types of chemo in the same week? Would that put her over the ledge?

I was checking on he web to find issues with taking two types of chemo at the same time. But I didn't find any reactions like this. It hit me that it might not be the treatments. Marie had continued to suffer with memory loss and confusion. Maybe it was just getting worse instead of better. Nothing at all to do with the chemo.

fatigue

When we went home Marie took a three hour nap. After she woke up, she still seemed out of it, and was very disoriented. Not really knowing where she was or what was going on. I was worried about her and whether this was a reaction to the chemotherapy. It never crossed my mind that it could be anything other than the chemo treatment. There was even a point when I had a hard time waking her up. I don't think I did wake her up, she just sort of awoke on her own. How powerful was this drug. She didn't eat much that day and then slept soundly the entire night. 

here she is

I turned the corner into the room with the chemotherapy chairs. It took a minute but I finally spotted her sitting in one of the chairs. She was leaning forward with her head resting on one of her hands. I asked her what she was doing there. She was disoriented not knowing where to go. She told me that they had forgotten her and just left her in the examining room. After looking for someone to help her, she found that room and sat down. She wasn't sure how long she had been sitting there.

There were other patients in that room being treated. Nurses went back and forth, passing her to take care of other patient. How could they not have paid attention to her. Somebody must have wondered who was this person, wearing a jacket, and just sitting in a chemo chair.

A nurse went and got the oncologist who explained that when they were done giving Marie her treatment, they thought she knew that she was allowed to leave. I'm not sure about that though. After they give Marie her treatment they want her to lie still for about a half hour or so. This way all the medication can flow down the tube into the brain. I wonder if no one ever came back to tell her that her time was up, and it was okay to go. 

where is Marie

I went to the back to look for Marie. No one was in the examining room where Marie was supposed to have been getting her treatment. I called her name and looked around, but no Marie or anyone else. So I went back to the lobby to see if she had come out a different door. All I found was her mother, who was getting worried, and asked where Marie was. Now I was worried and I went back again, determined to find her.

Again I started in the examining room, then walked down a long straight long hallway that led to the chemo chairs. Before I got there I ran into a nurse who wanted to know if she could help me. I told her I was looking for my wife, she has been back here a couple of hours. No, she said, I'm sure she was done a while ago and went home.
 

second injection

The first injection was done on September 2, 2009. Marie did not have a reaction. Everything seemed to go as planned. The second injection of topotecan was done three days later on September 5. Things began to change.

My mother in law was back in town to help out. So the three of us went to the oncologists office for Maries' treatment. We waited in the lobby while Marie was given her chemotherapy. We talked and waited. And waited. And waited some more. Time went by because we were talking, but it was few hours and we became concerned.

here we go

We were all alone in the oncologists' office. The doctor went into another room to mix up the drug after she made Marie comfortable in an examining room. I didn't know much about chemotherapy. I thought that the patients sit in big chairs, are hooked up to an intravenous drip and the drug is delivered into the blood stream. What I had been finding out was that are numerous types of chemotherapy. Marie already started one form, the capsules taken daily, seven days on and seven days off.

This new type would be a sort of injection into the omayan reservoir where the drug would flow down a tube and directly into the brain. Maire would lay down on a table in the examine room while the doctor did the injection. She would have to lay there for a while to allow the drug to flow through the tube. This type on chemotherapy is called intrathecal. It all went as planned. The total process took about two hours. Marie had no reaction that night.  

made contact

This time when I called the oncologist in Omaha, I got a different reception. Yes, they said, we have been waiting for you to call. I explained that I called a few days earlier and was turned away. They didn't know what I was talking about. I found the whole thing strange and unprofessional. But I wanted Marie to get started on this treatment. Our contact at this doctors office told me that the doctor at MD Anderson wanted Marie to already have started her treatment. So they were going to start on Saturday even though they are usually closed. We made plans to meet the oncologist in the lobby of the Physicians building, so she could escort us up to the office and give Marie her first injection.  

who's the oncologist

So far so good with the temozolomide. One bad case of a charlie horse. We didn't know if that was related to the treatment. I needed to get the other chemo treatment started. I contacted our surgeons office in Omaha again to get the name they had recommended. Once I had that name again I found the phone number in the book and called.

I made contact and explained who I was, and why I was calling. I was put on hold for while and then told they no nothing about it. Sorry. And hung up. It took another day or two for me to make contact with the people at MD Anderson. I was thinking that they had not contacted the oncologist in Omaha to set up Maries' treatment. No, they told me. I had called the correct oncologist in Omaha. The two doctors had already spoke about the case.
What was going on? 

finally start chemo

Marie finally starts chemo on August 24 2009. It began with the temozolomide capsules Take two at night for seven straight days. Then off for seven days, and begin again. She was glad to get started, even though it was only the capsules. At least we're moving in the right direction. I kept track of any reactions that Marie had. They were as follows:

day one-no reaction
day two-no reaction
day three-no reaction
day four-no reaction

This all seemed quite boring. I was pleased. I figured no news was good news. Of course, maybe nothig was happening. Must give it time.

day five-Marie woke up in the middle of the night, screaming. She had a severe charlie horse in one of her legs. She couldn't stand the pain for about an hour. This scared me. I didn't know if it was related to the chemo.Give it more time.

day six-no reaction
day seven-no reaction.

Round one was done.

 

more chemo

Although we finally had the temozolomide figured out, there was still the question of the injections the would flow into the brain. That medication was called topotecan. We were still waiting to find out who the oncologist was, that would administer that protocol. We knew that the oncologist at MD Anderson was going to call our surgeon in Omaha to get a recommended name for an oncologist here.

We went to the surgeons office on Friday to have Maries stitches, from the surgery, removed. I asked if they were contacted by the oncologist in Houston for the name of an oncologist here. They were helpful and gave me that name of the oncologist that they recommended. I called that office, and they didn't know who I was or what I was talking about. My thought was that maybe, the oncologist in Houston, had not contacted the recommended oncologist here yet. I called the doctors office in Houston to find out what they knew, but it was the end of the week so I didn't expect a call back until Monday or Tuesday.    

finally

The next day I called the insurance company again. This time I actually got someone on the phone that was helpful. When I asked about the pre authorization, she told me that wasn't reviewed yet, but she would look into it. She would find out what was going on. She asked me to call back tomorrow.

I did just that. I call back the next day and I got another person. Although it wasn't done yet, they did have everything they needed and it was in review. Later that day it was approved for one year. Of course we were home, in Omaha now, so we had to transfer the prescription to a new pharmacy. And they didn't have the medication. It took another five days to get the prescription filled.

home from Houston again

We finally were home from Houston and Marie was still very confused with much memory loss. We did not have the temozolomide and we still were waiting to hear about an oncologist for the other chemo treatment. I decided to concentrate on on getting Marie her chemo treatments ASAP. I knew she still had some tumor in her brain, which meant it could start growing at any time. If we could keep the tumor small, with the chemo, I knew she would have a better chance.

I called the insurance company again about the prescription, and was told, not yet try again tomorrow. I explained that the doctor wanted Marie to start the temozolomide right away and wasn't there a way to expedite the pre authorization. I got a response that I still can not believe. The insurance person told me that pre authorizations can take a week and that they are processed in the order they are received. I certainly could understand that. What I couldn't understand was if there are that many people waiting for prescription medication pre authorizations, why aren't there more people working in that department. They continued that we had no right to expect any type of favoritism, and that Maries need was no more important than anyone else. 

We were not asking for any special favors. We were asking for Maries prescription. If their department was behind, then the insurance company needs to put the resources in place to get things up to speed. I didn't believe the insurance company. When they told me that it could take a week for pre authorization, I believed they had a slow process. But trying to act like we wanted some special favor, or wanted to push other people in need, out of the way, was insulting.

run around

On the morning that we were to leave Houston, I checked with the pharmacy and there still was no approved pre authorization. I called the insurance company again and found out that the authorization had not even been reviewed yet. I explained that we were going back to Omaha that day. The insurance person told me that when the pre authorization was done, the prescription could be transferred to a pharmacy in Omaha. She suggested that we call back in two days. That was good news and irritating at the same time. At least I didn't have to worry about how to get the drug, if the insurance company ever gets around to looking at it.

We flew home, with no temozolomide, and with Marie having very little memory of anything that's happened the last week.

not getting the drug

When I called the insurance company I was transferred a couple of times, until I ended up with the prescription drug plan. It hadn't occurred to me that this drug may not be covered. I kept thinking that it was part of my medical insurance, like the doctors and the hospital. But its not. It's a prescription, just like any other drug your doctor might want you to take. My plan had a copay of $0-$25-$50, depending on the drug. The best part was that I could have little or no copay. The worst was that it might not be covered at all. That's why the per authorization. If the drug was going to be covered it would cost the insurance company a lot of money.

When I finally talked to someone, they told me that the authorization was done approved yet and we should call back the next day. They continued that anytime a drug is over $1000 it needs a pre authorized, and that this drug was approximately $11,000.

That price was for a one month supply. Actually the plan was to take two capsules a day for seven day, wait a week, and then repeat. So in a month Marie would be taking a total of 28 capsules per month.

If you do the math, 28 capsules, per month, at $11,000 calculates to $392 for each capsule. Marie needed to do this for three months before the medicals could tell if it was working.  

getting the drug

The pharmacy at MD Anderson told me that it could take time to get the pre authorization approved. They suggested that we go back to our hotel and check in with them later that day. That meant that I would have to take the shuttle back to the hospital to get the drug. It's not that I minded, but I didn't want to leave Marie alone. Now I would have to drag her back to the hospital a second time. She was clearly still recovering from brain surgery and had much confusion. We were going to fly home the next day and I was feeling stressed. So I called the insurance company.
   

our first taste of chemotherapy

When we were done with the oncologist and the pharmacist, we went down stairs, to the pharmacy, to fill the temozolomide prescription. I didn't realize it but, this type of chemotherapy is considered a prescription drug and covered under that part of our health insurance. I thought it would be easy but I was wrong. My insurance requires a certification to approve the payment for this drug, because it's expensive. The doctors wanted Marie to start this right away, but the insurance people had other ideas. They have a procedure for expensive drugs. It would take time and it would be frustrating.

chemotherapy

The conversation then turned to chemotherapy. We talked about getting the treatments in Omaha, both for convenience and the cost involved in traveling. The oncologist agreed, as long as we could find an oncologist in Omaha, that would both take direction, and stay in communication. He also agreed to help us find the oncologist in Omaha, and said he would contact our surgeon in Omaha to help make that transition.

more about memory

Before Marie first met with the oncologist that morning, she was interviewed by another doctor for assessment. I told that doctor about the memory issues. She tested Marie on things like what was the year, date, and city. Marie passed the tests and I kind of felt stupid. Then she told Marie some words, that she would ask her to repeat ten minutes later. Marie couldn't recall the words.

When Marie later met with the oncologist, he asked her about the memory test, that the other doctor had given just a few minutes before. By then, Marie couldn't even recall meeting with another doctor or taking part in any test. The oncologist explained to me that the surgeon probably bruised a spot in the brain. I never recall him telling me that the memory would improve, but the impression I left with, was that it would.

long appointment

It turned out to be a long day. After meeting with he oncologist, we met with a pharmacist to discuss the temozolomide. We talked about side effect of hair loss, nausea, diarrhea, and constipation. They gave us notebooks about chemotherapy, recapping all these things and more. Proper diet also seemed to be a topic. Not in regards to getting better, but rather to reduce side effects.

next appoitment

The next appointment was on Monday August 17th. We met with the oncologist to discuss a chemotheray regimen. The plan was simple, if chemo can be considered simple. Marie would do two forms of chemotherapy at the same time.

One would be a capsule form of temozolomide, taken orally, seven days on, and seven days off. The second type would be topotecan, injected into the reservoir in Maries head. This would flow down a tube into a cavity that the tumor(s) were located.

It would be a dual attack. One through the blood stream and one topically washing over the tumor. The hope was that one. or both of these methods might work to slow down growth. Stopping the growth would be the best case scenario.

can't sleep

That Sunday night, after the forgotten dinner out, I had trouble sleeping. When I do nod off I have vivid dreams. They are more like nightmares. 

memory loss

Here is an example of the type of memory loss that Marie was experiencing in Houston, last August. On the Sunday after Maries surgery, we went out to have a nice dinner. The hotel provided shuttle service so we went about a mile or so away. She did okay, but she didn't talk much. Marie would just stare into space and only respond to my comments. She didn't initiate any conversation. The restaurant was an upscale Tex/Mex eatery. She ate well and we went back to our hotel.

One hour later Marie asked me why she hadn't gotten any food that day. I explained that we had just returned from a restaurant where she had a good meal. She wouldn't believe me and accused me of not giving her any food. I asked her if she was hungry? Her answer was "I don't know".  I gave her a light snack, which she picked at. 

best hope

What the surgeon told me was, the best case, was to slow down the growth or recurrence rate. That was the best case scenario. This is what I had to think about while we sat at the hotel, waiting for Maries next appointment. Marie was at the hotel "recovering". She had no idea where she was, what city she was in, what year it was, or even a conversation that happened ten minutes earlier.

I didn't concentrate on the "best case scenario". I was trying to understand what was going on with Maries memory. I didn't feel I got a straight answer on the memory loss. Or if there would be improvement. I decided that one day at a time would be the right approach.

out of the hospital

On Saturday August 15, 2010, just three days after the surgery, Marie is released from the hospital. Her memory has been suffering. I complained to the nurses and the doctors, that would check on her, and everyone had an explanation. It was the steroids, it was bruising from the surgery, it was normal. Believe me it was anything but normal.

We left the hospital and checked into our hotel. Our room had its own kitchen so we went next to to the grocery store and bought some supplies, Later Marie talked to family members again, on the telephone.

She continued to have memory problems. She couldn't recall conversations that happened ten minutes earlier. There was also the issue of not knowing the year or what city she was in.

the next day

Memory is still an issue. When I asked her if she knew where she was, she told me that she is in an airplane room. Instead of a hospital, she thought she was on a plane. A little later, she thought she was on a cruise ship. When I pointed out the hospital equipment in the room, she stood fast that it was a cruise ship.

By that evening Marie seemed to improve. I told her about her dad passing away and she took the news well. She knew he had been sick. A little later she talked to her family on the telephone.

intensive care

After recovery, Marie was sent to intensive care. Unfortunately, there were no beds available right away, so Marie had to wait until 10 pm to be moved. When I was able to talked to her I discovered that she nhad extreme memory loss. Marie did not know the year. She had no recollection of the surgery. The medicals that checked her in, attributed to memory loss to steroids being used to control the brain swelling. Otherwise she appeared to be doing okay.   

we talked

We sat it one of the small conference rooms and discussed the surgery. The doctor told me that he could not get it all. He removed all he could but some was so deep he would create bad neurological problems if he tried for more. The surgeon suggested that chemotherapy, if combined with  whole brain radiation, might be an option. He implanted the reservoir that would be used for the delivery of the chemotherapy at the end of the surgery. His only reservation about the reservoir, was the high rate of infection they cause. There would be no more recommendations, from him, for any more surgery. 

That was a lot to take in. There was still tumor in here brain. Chemotherapy could be tried to slow down or stop the growth of the existing tumors and radiation may help control additional tumors from starting. this was not the best news. But all that would be in the future, The immediate goal was to recover from surgery.

4:00 pm

The last two hours were almost uneventful. That's if you consider, absorbing the facts that your wife is having her third brain surgery, her father just died, and your kids are hearing bad news from other people.

Instead of the nurse coming this time, it was actually the surgeon. As he approached me I could tell something was not the same as the last surgery. I knew it wasn't the worst news because I wasn't escorted away to another area. But still the look on his face wasn't good. He appeared very tired. You could see it in his face.