a little vague

Only two days left for this year and I'm wondering if I actually did what I set out to do which was tell my wife's story of her fight with brain tumors, and update everyone on her current condition. I think I have, although I've been a little vague about what's been going on the last couple of days. That's because I still need to talk to family members and get a second opinion from the medicals.

research dollars

Maybe I'm being selfish, but it seems like the only way Marie is benefiting from research is if the medicals find that something appears to work on a particular type of tumor and then they say let's try that and see if it works for you. They do procedures that are generally acceptable for her type of tumor. But when they don't work the medicals really don't know what to do next. We can try this, or we can try that, but it seems like it's just an educated guess. It's not the doctors fault, there is just not much information about this tumor out there. There is no owners manual for this disease. I believe that would come from research. It's such a rare tumor though and doesn't affect that many people. How much money should be spent on that research? My guess is it should be more than is being allocated now.

perhaps more research

One of the things that I think I've felt about tumors is that they have their own time tables. They do what they want, when they want. Sometimes the medicals give a treatment that works and sometimes no. I think the medicals are getting more right than they used to. Perhaps more research will do the trick and provide the answers that can unlock the mysteries of tumors. I just don't know if that's hundreds of minutes from now or hundreds of years. It seems like there is research being done on some types of tumors but I doubt much, if any is being done on Marie's type.

an answer

We may as well talk about the MRI. Apparently the acne medication is not working and the tumors are growing. Our oncologist here in Omaha will be sharing the information with the doctor at MD Anderson for his opinion. First we'll want to know if he agree with the oncologist in Omaha. I'm talking about whether the acne medication is working or not. If the two side agree then we'll want to see what each recommends about future treatments. With just a few days left until the end of this one year blog, I'm not sure we'll have an answer that quickly.

shingles

Today we saw Marie's oncologist to talk about the MRI. But before that happened the nurse noticed a rash on Marie's face. I thought it was the eczema spreading but it turned out to be shingles. Not unusual given that the immune system may be down due all the treatments Marie has had. They put her on medication to help this new development clear up faster. Let's hope so.

positive results

We are all ready seeing positive results from the eczema medication. It's only been a few days but being off the acne medication and applying the prescription cream seems to be doing the trick. What I'm wondering is, what's in store. The good thing is Marie is doing great right now. Alert, happy, and surrounded by family.

merry christmas

On Tuesday we will see the oncologist. I've looked at the MRI and I'm not talking. I'll let the doctor confirm what I think I'm seeing. Today is Christmas Day and was one of the best that I remember. Marie really liked her presents and even dinner was okay, given the fact that I cooked.

christmas eve

Today is Christmas Eve. Some light snow assured a white Christmas but also will delay our son's arrival. The holiday can wait. Safety first. One week from today will complete a year of working on this blog.

a passing

We also received bad news today. There was a passing in Marie's family. An uncle who was a super guy and great family man. He'll be missed.

when to look

The MRI was done this morning at 10:30am. I had them make me a disc so I can look at the tumors compared to the last MRI, which was back in September. We will not see the oncologist until Tuesday to get the official results. I haven't looked at the disc yet and I'm not sure if I want to or not.

symptoms

Based on other symptoms that Marie is having the doctor went ahead and did order an MRI so we could see if her symptoms are from her current medication or the tumors. And whether she should continue on the current regimen or try something new. She is experiencing trouble getting up from a chair, difficulty in going up and down stairs, and confusion.

eczema

Marie had her oncologist appointment on Wednesday 12/22/10. The doctor said the blood tests look good. She needed to start on a medication to help against the eczema that she has broken out with due to the acne medication. At least she'll be off the medication for a little while to her her body a chance to recover some.

enjoy the good times

How could I help the patient live a quality life when I wasn't doing it myself. I didn't need to believe that everything was rosey, just that we could fight the disease in a positive way. And by doing so we could enjoy the good times instead of lamenting the bad.

positive outlook

I never put much stock in the "keeping a positive outlook" junk. It took me a long time to realize that what I should be doing was, not letting a negative outlook overtake my daily thoughts. When I did, the disease was winning. It was beating me and I didn't even have the brain tumor. How could I help the patient live a quality life when I wasn't doing it myself. I didn't need to believe that everything was rosey, just that we could fight the disease in a positive way. And by doing so we could enjoy the good times instead of lamenting the bad.

those that wanted to help

There were people that helped that we never expected. It would just come out of the blue. There is no way to thank those people other than just to say thanks. Even blood family was split. It's easy to get mad and upset with those that ignore the disease and our troubles. Instead I needed to spend my time remembering those that wanted to help. When you let the negatives control your thoughts then the disease wins.

expected help

Believe me when I tell you that these experience have affected us. We just will not let it win. Over the course of time we have looked for support both financially and in spirit. Sometimes we have received it and sometimes not. When you look financially sometimes the help is there and sometimes not. There are people that we expected to help that didn't. That taught us that we should not have expected anything from anyone.

in control

I really mean it. Our life is the same as anyone else. Oh at first it was crazy. Brain tumors, memory loss, lengthy hospital stays. I had to quit my job. My wife became disabled. Eventually we got used to it. It became a part of our lives. All the things related to the brain tumors took the place of other parts of our lives. But we learned to incorporate it and not let it take over everything. We still feel in control.

same as anyone else

We go to doctor appointments, hospital stays, treatments, and therapies. But after we go home we do the laundry, buy the groceries, get the mail, clean the house, pay bills and go to work. The same as anyone else. Other may take the kids to soccer practice, but we go to chemotherapy. Some people go on vacation while we may go to Houston for surgery. A trip away from home is a trip away from home.

part of our lives

Our family's experience with brain tumors started as a nightmare but has become our reality. I'm not suggesting that everyone would have the same experience, just that this is ours. It has become our normal. Our routine. Things revolve around it at times, but it part of our lives, not our life.

wrap presents

Today's plan is simple. Enjoy the planning of the holiday gathering. Wrap presents and relax. I only have three days left to work before I'm off for a week. I start my vacation by taking Marie for her oncologist appointment. Hopefully her blood tests will be good and not affect her enjoying the holidays.

aggravating

The relief of being off the medication will be a welcomed event. At least she' have the holidays to let the side effects subside before the medicals decide if Marie needs to keep taking it. These side effects are really just annoying and aggravating, not quality of life affecting.

itching

Marie has just a couple of days left of the acne medication. the side effects have been much more persistent in this last months round. Chapped lips so bad they're bleeding. weakness in the legs making it difficult to stand. And the itching. Itching, itching, itching.

good things

Enough about all of that. In sixteen days it will be one year that I have been blogging about my wife's brain tumors. I can't believe the time has gone so quickly. I have missed almost no work because of the tumors this year, just a couple of doctor appointments basically. Marie has had three different types of chemical treatments this year. But no hospital stays. Be thankful for the good things.

you decide

One medical seemed it think it was okay not to be specific about a prognosis because there is always hope. If they give the patient bad news it might negatively affect the patients outlook. While another medical seemed to think that you could be taking away a patients ability to arrange for their final days, such as making a will or settling affairs. Who's right, who's wrong? You decide

debate

Wow I just saw a television show where medicals were having a debate about whether a doctor should ever lie to a patient. It seemed to me that they may have agreed on not lying but the debate was whether withholding information is lying. Withholding information???

let me know

I don't remember hearing or reading that in any brochure for radiation. If someone else has, please let me know so I can stand corrected. When your wife is going through this you want to get her the best care that you can. You rely on your doctor to do their best and keep you informed on what's going on.

code blue

Marie had four radiation treatments but I never remember hearing that it's possible if she had surgery later on that it might not heal and spinal fluid could run out of her head. That it could be possible for the spinal fluid could become infected and that my daughter may have to watch her mom go through a code blue.

no one likes a complainer

I know I'm complaining now and no one likes a complainer but since it's my blog I can do it. Have you ever seen a brochure for a resort and then planned your vacation around it? When you get there and it's not what you expect, you get mad at yourself for believing the brochure. I feel that way about some of the medical expediences that we've had.

wonderful cruise

We actually sat with a doctor, who was reviewing an MRI with Marie, and he told us all about the wonderful cruise that he had with his family. It didn't bother me though, I was busy thinking about how we would be able to buy groceries that next week.

yeah right

What might even be better is sending the patients a get well card. Just drop a note in the mail saying we were thinking of you, hope your doing well. And oh by the way here's a check for twenty bucks go have lunch on us and feel better. Yeah like that's going to happen.

research is important

Don't get me wrong, research is important. It's very important. But sending donation requests to patients that are still struggling with their disease and the costs involved is cruel, in my opinion. They may want to give but can't because of the amount of their own medical costs. They could feel guilty because they can't give. Why not just leave them alone.

research money

What kind of drives me crazy is that besides the bill the only other consistent mail from the medicals is a plea for donations. The money seems to always be for research. But I'm not aware of any research being done on Marie's type of tumor. Why do they need all this research money.

here's one for you

Marie has had quite a number of hospital stays, doctor appointments, surgeries, radiations and chemo treatments. I realize that these are services that expect payment. They treat Marie and they want to get paid. I understand. It's a business. They send you a bill. I expect that and that's okay.

12/15/10

It's ten days until Christmas and we still have a lot of shopping to do. One week from today is Marie's oncology appointment. I would really like to be done with all the holiday preparations by then. We're anticipating the setup of the next MRI at that time. It would be nice to have everything done and just sit back and enjoys the festivities of the holidays.

next mri

This next MRI should let us know if the acne medication is working. I suppose if it is Marie will continue with the same treatment. If not then I don't really know what's next. They could add something to the acne medication or go back to a more traditional chemotherapy. I know the medicals talked about the ICE treatment at one time. Let's hope the current treatment is working.

back to the story

Let me just recap. Marie started 2010 with chemotherapy taking temozolomide capsules. They didn't work. After a challenge from the health insurance company she moved onto a different chemotherapy. Topotecan was delivered intravenously. The September MRI showed that didn't work either. She is now getting to the end of a regimen of an acne medication to try and tackle the brain tumors.

anxiety

Marie has an appointment with her oncologist on Wednesday 12/22/10. I sure that he will order her next MRI at that time. My estimate is that it will be done the first week of January. That's about three and a half weeks from now. The anxiety has started.

back to today 12/12/10

Weather this weekend was a blizzard. Although not that much snow, the wind made it zero visibility at times. Marie's sister decorated the Christmas tree for us on Thursday or I don't think it would have been done. We have a lot of shopping to do. I hope we get going.

get it done

Some new patients had that look of fear. Not knowing what to expect. Would it hurt. Will they lose their hair, be nauseated, become week, helpless. Then they have the first treatment. Not so bad. Can get through this. Just do it and get it done.

no feeling sorry

There seemed to be a resolve from the patients. They knew they had the disease and this was the treatment. So get it done so they could go on with their day and life. I didn't witness anyone feeling sorry for themselves at all. Some new patients though...

oh poor me

Sometimes patients would just sleep through their treatment. Some would read, talk, watch TV, or just sit there. But I never, even once, heard one complaint. Never did I hear anyone say why me or oh poor me. It seemed like the caregivers were more concerned than the patients.

stay to themselves

I just don't know why there were so many more women than men. The nurses were very careful to keep patients information private so I don't know what types of cancer anyone else had. While there was some conversations between patients most seemed to stay to themselves or the people that were with them.

the vast majority

The majority of the patients were women. I mean the vast majority. It I had to guess a number I would say 75%-80%. This stayed consistent with each visit. Everytime we went it was almost always different people. I thought we would see the same patients over and over. While we did see some of the same people most were always different.

what I saw

I'm going to describe what I saw in the chemotherapy area. I am in no way trying to suggest that all chemo rooms are the same, just what I saw. About a third of the patients had someone in the room with them. some had people out in the waiting room, some were dropped off, and some were just by themselves.

great nursing

I didn't really know what to expect in the chemo room. I knew there would be multiple patients, but what would the atmosphere be like. I can say that the nursing staff is gentle and reassuring to the patients. They make sure they are comfortable and respected. Again, more great nursing for chemo patients.

back to the story

When the new cancer wing was truly done the chemotherapy room looked great. Taking Marie into the room I could see that most of the chairs were full. The sun was shining through the window of the rock garden. It almost looked like the patients were a part of nature. As I handed Marie over to the nurse I couldn't help but think here is another flower for the garden.

back to today 12/8/10

Marie will be getting a surprise visit today from her sister and sister-in-law. She hjas no idea that they are flying out top spend a few days. It should be a good visit for her. I'm glad.

rock garden

There are windows from floor to ceiling that looks out to a beautiful rock garden complete with a fountain and benches for seating. They had also installed supports for flat screen TV's. Even though the room wasn't completely done yet, it was finished enough to start giving treatments.

plenty of room

I went to the I.V. room with Marie on her first time in the new cancer wing. Automatic doors swing open to grant entrance into a spacious room. The chairs were arranged in a horseshoe with plenty of room for patients and the nursing staff.

new wing

Finally the new cancer wing at the hospital was finished and open for business. And business was booming on our first visit to the new facility. Everything was clean and spacious. Even flowers that were sent to celebrate the opening decorated the waiting area. There was an understated elegance about the place. It almost made you glad to be there. Almost.

out for some holiday shopping

We were up early today and took our newspaper and ads to Panera's for breakfast. Then it was off to the mall for holiday shopping so we could get some packages under the tree. Four hours out was enough for Marie. She tires more easily right now. It was a nice day and we didn't overdo it.

monitor the blood

Each week after the chemo treatments, Marie would have to go to the oncologist's office to have her blood drawn. Monitoring the red and white cell count would be important to watch for the potential to be more receptive to infection. Mostly she had no problems. Sometimes we would have to eliminate uncooked foods from Marie's diet, such as fruit and vegetables.

pretty easy

At the start of the three day Chemotherapy treatment, Marie would get an I.V. injection of a medication that would reduce the nausea that so often would be attributed to chemo. It definitely worked for her. Actually she has had almost no adverse reaction to chemotherapy. She would sit in the chair, get hooked up, and get her I.V. Then we would go to lunch. Pretty easy.

depressing area

The area in the oncologist's office where the chemotherapy was given was a dingy, narrow hallway with old I.V. chairs. The was a new cancer center being built that was connected to this area and I hoped it would open soon. This was a depressing area although the patients didn't seem to notice.

chemo

Topotecan treatments finally started after the initial denial with the insurance company. Marie would get chemo three days in a row and then be off for four weeks. This would be done for three months and then take an MRI to see the results. The chemo would be done in the oncologist office as a IV.

approved

About an hour before we were to leave for the doctors appointment a message was left on my cell phone. It was from the insurance company case manager. The message was to let me know that to two side talked and Marie's topotecan treatments had been approved.

get them on the phone together

It was my HR department that told me that the insurance company felt they were reaching out to Marie's oncologist and that it was the doctors office that wasn't cooperating. I let the HR department know that Marie was schedules to see the doctor the next morning and that I would sit with the doctor and make him call the insurance company in front of me. And if the insurance company could back up their claim that the doctor was the one not cooperating then I would fire the oncologist on the spot while we were on the phone with the insurance company.

concerns

I had included my HR benefit department in the process because I had the feeling that the insurance company may be dragging their feet with this issue. They told me that they could not be involved in the insurance company's decision but they would contact the insurance company to let them know my concerns.

reaching out

This went on for about a week with the insurance company stating that they were reaching out to the doctor with no response and the doctors office claiming the same thing. It was suggested by someone that I contact the local news media to intervene. I didn't want to do that and thought that I should try one last time to get the two parties together.

nobody was talking

This is when the problems started. The insurance company would say that they were trying to get Marie's oncologist, in Omaha, on the phone to have the discussion, and the doctors office would say that they were supposed to be calling the insurance company's medical director but they were having no luck in getting that phone number from the insurance company.

medically necessary

I was informed that the oncologist could request a pier to pier discussion with the insurance company's medical director about the denial. It was possible to overturn the denial if Marie's doctor could supply reasons that the topotecan would be medically necessary.

probably shouldn't have

I question the insurance company about why they had approved the previous topotecan treatments but were denying it this time. I was told that the person who approved it probably shouldn't have. That the request never made it to the medical director, who I was assured, would have denied the request.

crackpot idea

Marie's tumor is supposed to be a benign Grade II growth that was generally treated with surgery and or radiation. Topotecan is a chemical that was being used for other forms of cancer. So why would the FDA have ever approved the chemical for neurocytoma. For all I know the FDA may have never been asked to consider it. I don't know. But the way the insurance company said no it was if they were trying to protect Marie from some crackpot idea. At least that's how I interpreted it.

denied

We never thought we would have an issue with the insurance company with the topotecan chemotherapy since Marie already had topotecan earlier, but we were wrong. Our insurance company denied to pay for the treatment because, they said, that it wasn't FDA approved for this particular type of tumor.

back to topotecan

It was felt, by the medicals, that the topotecan was not given to Marie long enough to be effective because Marie got the spinal fluid infection that cause the treatment to stop, after only a few applications. They were still confident that this could be a powerful drug that could fight the disease.

a few options

The medicals came up with a few options but presented only one to us. It was their belief that Marie should go back to the topotecan. The first time she tried it the chemical was delivered into the brain through the reservoir that was installed in her head. Not this time. It would be given intravenously in the oncologists office.

cooperation

The medicals took some time to talk this out out. MD Anderson presented it back to their tumor board and we waited to hear. Our oncologist was very active in the process as well and together the two teams of medicals cooperated to come up with a solution.

back to the story

With Marie home and moving into the year 2010 we were set to allow chemotherapy to do it's work. She continued on the temozolomide capsules until an MRI revealed that the treatment was not working. The tumors continued to grow. The temozolomide was discontinued and now it was back in the medicals hands to figure out the next step.

back to today 11/17/10

Sorry, it'd been a while since I blogged but I've been really busy. Let's get caught up on the current situation. Marie is talking the acne medication as well as a medicine to lower triglycerides. She had an appointment with her oncologist today to check her blood and general overall well being. She will do another month of this treatment and then an MRI in January. So as long as no problems come up we can just enjoy the holidays.

temozolomide

Marie was still on the temozolomide capsules at this time. We didn't know if they were working, but it was a powerful medication, saved for the fastest growing most dangerous brain tumors. Maries' tumor was slow growing and supposedly benign. Since nothing else seemed to work, this was still the medication of choice.

her choice

Marie was finally free to stay home and enjoy her life. Even though it meant staying home alone while we went to work each day. She was free to put on the television or radio. Eat what she wanted. Walk to the mail box. What she choose to do was sit on the couch and to nothing. But it was her choice and we supported it.

the blog

I decided to start this blog on New Years Eve 2009. So much had happened over the previous nine years. So many tumors and procedures. Each time created new challenges and problems. There were no free rides with this desease. The reason that I write this blog is to keep all of those things available to anyone who may be going through this and needs to know they are not alone.

still slippers

Weather was terrible in December 2009. Snowstorms and freezing cold temperatures made it difficult to take Marie out. She was still only able to wear slippers because her feet were so swollen from all the steroids she had taken. Even though she was off that medication at that point the side effects took a long time to subside. We decided the best thing to do was keep Marie in doors as much as possible and bring the holidays to our home

on our own

Finally Marie was done with speech and occupational therapy, and there was not going to be anymore daycare. We were on our own. All that was left now was to get better. Destroy the tumors. She was still taking the temozolomide capsules. We had hope that they would work. It was almost the holidays and time for a new year. I couldn't wait for 2009 to end.

life

At this point we are in December 2009. A month filled with snowstorms, cold temperatures, and no solutions to the growing brain tumors. Marie would no longer go to adult day care. She was willing to fight to stay home. Yes she had memory issues and some confusion, but she demanded dignity. Good or bad, right or wrong she wanted to live her life. It was time for me to stop taking care of her and begin to support her right for a quality of life.

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.

still today 9/29/10

We went to the oncologists office today and talked with the person working with our insurance company. I was very willing to get involved and make calls to get things moving for Marie's treatment, but she asked to let her try again today before I got involved. She called ma a few hours later and let me know that everything had been approved for Marie's medication. That was great news. Now we wait for the pharmacy to call us to let us know how to get the medication. More waiting but we're moving down the path.

today 9/28/10

Today makes four weeks since the last MRI. The medicals want to change the treatment but so far nothing. I know they've been working on it but there must be some hang up. I'm going to get involved and find out what the problem is and see if I can move things along.

over nine years of history

Taking Marie to daycare was only part of what needed to be done. She needed to get started back on chemotherapy. I wasn't going to take her back to the last oncologist so I needed to find a new one. And I needed to do it quickly. What I did was call our family doctor and asked what oncologist I should take Marie to. They gave me a name and I called. They agreed to an appointment but we needed to get Marie's history to them so they could review what has been going on. And that's what I did. Over nine years of brain tumor history was sent to the new oncologist office.

sneaky

The first week of taking Marie to the daycare went pretty well. I would take her in the morning, she wouldn't want to stay, but when I came to pick her up at the end of the day she seemed fine. Actually she didn't have any memory of the morning when I brought her there. If she was mad at me for leaving her there, she didn't remember at night. I began to count on that loss of memory. It felt sneaky and I didn't like it, even though it was necessary.

getting ready

Getting Marie ready each day for daycare was not easy. She couldn't get her own breakfast, needed help getting cleaned up, and couldn't dress on her own. Getting out the door on time seemed like a miracle everyday. But it was worth it. Marie was home with us and I didn't have to worry about her when I went to work.

going to the daycare

Taking Marie to the adult daycare was tough. We had to be there by 7:00 am, so we needed to get up pretty early. It definitely brought back memories of getting the kids to school. But when the person going to daycare was an adult, and they didn't want to go, it was even worse. The first time I took her was emotional. When we got there, they took Marie's coat and had me take her into the room with the other early morning arrivals. We sat down together in front of the television and I stayed for a few minutes. When I told Marie that I had to go she became upset and didn't want to stay. She wanted to go home. One of the nuns told me to leave and not to worry. She said Marie would be okay. That's what I did, but I felt awful.

back to the story

Let's get back to the story right now. Okay Marie was very weak and confused. Her memory was very poor. She was still on steroids, but I didn't know why. I needed to go to work, so she had to go to an adult daycare. The daycare agreed to take her as long as she could use the bathroom on her own. I was afraid she would sit down and not have the strength to stand up when she was finished. We just didn't have a choice. The cost to keep her home was was beyond our means. There is no help available if you can't pay for it. None. No government agency exists, that I could find, to help at all.

yes still more today

It's been three and a half weeks since the MRI and Marie hasn't started treatment yet. There apparently is a lot of paperwork that has to be done to get this acne medication. I guess it's very powerful and tightly controlled. Unfortunately that means the tumors are growing and growing while we wait.

still more

More than just trial and error, the doctors continue to try treatments based on what history they can find of a treatment that has had a positive effect. And that's what led to this newest proposed treatment. Acne medication. Yes that's right acne medication. The doctor told me that there is a medication that's being used for severe acne, that has been found to have positive effects on some brain tumors. They believe that this should be the next medication used, so we are moving forward with this treatment.

yes, still today

According to the doctors this tumor has more preferred ways of treatment. But when those ways are used, over and over, and it still recurs, then other ways of treatment need to be tried. That's how chemotherapy was used on Marie. Not a more preferred way of treatment for this type of tumor, but the option of surgery and radiation have appeared to run out. The chemotherapy has has some positive results and then the tumor reverses itself and starts to grow again. My hope is that the doctors will get the right kind or combination of chemotherapeutic drugs to finally stop this tumor. It's like they're so close, getting some positive reactions, and then just miss.

still today

The doctors worked on this for two weeks before we were contacted with the new plan of attack. They always remind me of how rare this tumor is and how even more rare it is to have recurred so often. I know they are not making excuses, they are telling me the truth. This particular tumor or disease doesn't come with an owners manual.

back to today

It's time to start talking about what's been going on lately. The last MRI showed significant tumor growth from the one taken two months earlier. Certainly it was a disappointment since there had been improvement with the current treatment, and now it seems to have reversed itself. Chemotherapy was stopped while the doctors discussed what was going on and how to proceed. Marie took this all in stride.

a wheelchair

The first time I took Marie for rehabilitation it was quite a walk from the parking lot, into the building, over to the elevator, up a few floors, then down a hallway to the speech therapy room. After her therapy session we walked back down the hallway to the elevator, but before we went down she decided she needed to use the restroom. Marie went in, and even came back out okay, but that was as far as she could go. She leaned on that wall next to the elevator and slid straight down until she was on the floor. Her legs had given out. No strength left at all. I tried to help her up but there was no way she could stand. I had to go back to the therapy room and get help. They called for and then a few of us got on either side of Marie and pulled her up. She was like dead weight. We put her in the wheel chair and took her to the car. By the time we got to the car she had enough strength to get off of the chair and swing into the car seat.

weak and confused

I wanted to describe what I mean by weak and confused for Marie. She had little strength in her legs. If Marie was sitting in a chair, she would not be able to stand up. I know she was very weak, but I also think she had a problem of remembering how to stand up. I have no way to know how much of that was lack of strength, or lack of memory. She could walk, but not too far. Walking from the car to a building was one thing, but navigating throughout the building, to get to a doctor's office was another thing. A wheel chair would be necessary.

still review

After all this time in the hospital while taking steroids, Marie was left weak, confused, and needing rehabilitation just so she could restart the most current brain tumor recurrence. after all that the social workers came in with the option of placing Marie in a nursing home. And my brilliant solution was take Marie home and place her in adult daycare with people much older than herself.

review

Let's just review the hospital stay. On September 11, 2009 Marie was admitted to the hospital because an infection was discovered in her spinal fluid. On her first night, I had to make the call on whether to revive if the medicals could not bring her back to a life quality level. Marie's spinal fluid leak finally revealed itself to the medicals, causing her to undergo a lumbar puncture to drain off spinal fluid. This resulted to air filling Marie's head and creating another dangerous situation. Our daughter witnessed her mom have a code blue emergency only to overhear a medical say she loved when this happens, it's so exciting. The doctor removed the omayan reservoir and attempted a number of times to stop the spinal fluid leak. A plastic surgeon was finally called in to surgical repair the leak.

a pretty large amount

What I needed to do was find an adult day care that was affordable, nearby, and had space available right away. The prices were all similar and that facilities were all pretty comparable. I was able to find a place that was on my way to work. What I needed was three days a week from 7:00 am to 5:30 pm. The other four days Marie would stay home with our daughter or me. Each day at the adult daycare would cost $45, so a month expense would be $540. That's a pretty large amount when you are living on one paycheck and the small amount of social security that Marie was receiving.

no choice

Driving her home that night I was sure I had done the right thing. Well I was pretty sure. No, I'm sure that I was sure. I think. Marie had a lot of memory and cognizant issues. Besides that, she was very weak. If I remember right, she was in the hospital 32 day. Her strength was almost gone and she needed help doing most things. Marie would need lot of care and rehabilitation. And I had no choice, I had to go to work.

we have not been back since

The way I felt was that the hospital was so sure that I was going to have Marie placed into a nursing home that they had no plan when I said I would take her home. So, if you want her, come and get her. I did just that. I went to the hospital after work, got her dressed, packed up her things and took her home. I was happy to get her away from that hospital, and .

what is she talking about

To this day I still can't believe the social worker wanted Marie out of the hospital that day. When I question her as to if she was trying to get rid of a patient, she said no, she just wasn't sure if the insurance company would pay for any additional time in the hospital. I had not had any problems with the insurance company up to that point, so I wasn't confident that she knew what she was talking about.

get her now

Finally the day came that I told the social worker that I was taking Marie home. I called the social worker during the day, while I as at work, to tell her. Okay was her response. We will get the paperwork done and you can come right over and get her now. No is what I told the social worker. I was at work and couldn't get there until 5:30 pm. Besides I told her that I still have not been told that the spinal fluid infection was cleared yet. She told me she would check on that and call me back.

not left alone

I made a decision. Not one that was well informed or knowledgeable. I made a decision that just felt right. Marie was going to come home. She wanted to be home and I wanted her there. The medicals were concerned about Marie being left alone. I could drop her off and pick her at at adult day care each day that I worked. I would make her rehabilitation appointments on my day off. Marie would not be left alone. Leaving her in a nursing home with mature residents many years her senior, in my opinion, would have been leaving her alone.

long term consequences

The last thing that I think I understand about medicaid is that each state has the ability to dictate how the medicaid program would work. Does that mean that medicaid could vary from state to state? These programs are hard for me to understand and the the qualification are difficult to navigate. I know That I needed an expert to help me decide what to do but I just didn't feel like I had anyone that could explain to me all the options and the possible long term consequences. The social worker was pushing for a decision, any decision. And she wanted it soon.

affordable medicaid or not

Your entire income would be taken into account and medicaid would make a decision how much of that income should be allocated to the partner receiving medicaid benefits. So if they decided that Marie should receive 40% of the income then her medicaid benefit would be reduced by that amount of money and you would be required to pay for those costs. If that was the case we wouldn't be able to afford medicaid.

spousal medicaid

The social worker called me again to find out if I had all the information that I needed on the available nursing homes. I wanted to know what would happen after ninety days when my insurance coverage would run out. She told me that we could always file for medicaid. The way I understand it my state allows us to file for spousal medicaid. I'm am not that knowledgeable on this subject but the way I think I understand it is, the partner that needs medicaid would receive it.

adult day care

One of the calls I made led me to the idea of enrolling Marie into adult day care. Instead of a nursing home. I checked into a few option. Some only would take people 55 years or older. Their idea of adult care was actually senior care. Other places were open to age, but cautioned that the average age was well into the seventies. What was our choice, a nursing home or adult day care. I wanted her home so the decision was easy to make. And the cost for a month was the same as in-home care for a week. Now I needed to pick a place that could take her quickly.

time to make a decision

The social worker got back to me with the nursing home facilities that had available space and offered rehab. It was my job to pick one out. I asked the same questions to this social worker that I asked the last one, but I still got the same no answer responses. They had no intention of giving me any recommendations or direction. The hospital was done with this patient and wanted her to move on. I came out and asked if they were trying to push Marie out and she assured me that wasn't the case. But the insurance would only cover for so long. It was time to make a decision.

$200

That organization has the right to dole out money as they see fit. I didn't agree with their policy but I was happy that there was some help for some brain tumor patients. What floored me the most was when he told me that that amount of money available for co-pay relief was small. If we would have been approved it would only have been for about $200.

I've have wondered since then if the monies were denied for benign brain tumors because they could last longer and cost so much more. Marie had three brain surgeries, four stereotatic radiations, and two different types of chemotherapy treatments up to that point, all with no end in sight.

malignant vs benign

I was some what dumb founded by the response that co-pay funding is reserved for malignant brain tumors only. Arguing was to no avail, but I tried anyway. He explained that malignant tumors grow so quickly that the patient may not have time to make financial decisions and needs help right away. Honestly that was an excellent point and one that I respected. But with that said I felt I needed to present Marie's side. I told him how Marie has had recurring tumors for nine years by that time. Financial decisions were long since past. The money was gone.

tumor type

We had earlier filled out a form for co-pay relief that was provided by a social worker. I received a letter in the mail from this organization which stated that I needed to call in order to complete the process. When I called and was connected I was told the the application was denied. I explained that the letter said I should call to complete the process. That's what were doing now, was the response.

The reason it was denied was because of the tumor type. Marie had a grade II central neurocytoma which is considered benign. That organization wold only support malignant tumors.

it's worth a try

Armed with all my numbers I started making calls. I called the United way and they gave me telephone numbers of some possible options. One of those numbers led to more phone numbers and so on. I kept getting more numbers to call, but no help. Most of the calls went something like this.

I'm looking help to pay for my wife's doctor co-pays. She will be getting chemotherapy and we can't afford all the co-pays. Oh, I'm sorry we don't actually pay for anything. We just offer support. Or, I'm looking for in-home care for my wife so I can go to work during the day. Can you provide the service or funding to help pay for it? No, but why don't you try this other organization. I don't know if they can help you, but .

largest financial obligations

The social worker was busy looking into available nursing home facilities and I got busy making phone calls. My mission was to find financial support, to pay for the in-home care. I believed the last option was to place Marie in a nursing home, not the first.

I started with the internet to find organizations or charities that might help. Mt goal was to obtain in-home care and co-pay relief. Those would figure to be the largest financial obligations. I also got a list of possibilities from the social worker. Marie needed to have rehabilitation and start back on chemotherapy.

government program

I must have been crazy. Why would I expect the insurance company to pay for Marie's care. I believed that it was the care she needed, but it wasn't medical care. I guess if she got hurt then they would have payed to have the medicals take care of her. I thought of it as preventative care. But it looked more like babysitting. At $18.00 an hour.

This was one of those situations where it seems that everyone knows better than you. And they all have stories about how they know that this one, or that one, that got in-home service. Most of the time when I got to the bottom of the story, it tuned out the person was getting nursing care. Other times it was a supposed government program that payed. But no one could ever give me the name of that program.

three days a week

The internet has many in home care agencies to chose from. It was easy to get telephone numbers. In most cases someone would answer the telephone, take the message, and then have someone else call me back. Marie didn't need any nursing care, just someone to keep an eye on her. The average price for that service appeared to me to be about $18.00 per hour. If I needed to get someone three days a week, for 10 hours a day, then the cost, each week, would be $540. While that's a lot of money, I was sure a nursing home would cost more. It just never dawned on me that the insurance company wouldn't pay for it.

in home care

I told this new social worker that I wanted Marie to come home and that I would take her to rehabilitation as an out patient. I was afraid Marie would get into a nursing home and not get out. Of course the social worker explained that the concern for Marie was that she might get hurt if no one was there to watch her. My thought was, no problem, let's just get in-home care.

get me information

When the new social worker contacted me I could tell she was both more experienced and professional than the last one. Although I wasn't sure I was going to get any more information with this person. She definitely wanted to take charge of this situation and move me to decision making. I asked her to get me the information of what nursing homes actually had space and provided rehabilitation services. I didn't see any reason to be checking out places that may not have room for Marie anyway. Still I was wary of placing Marie in a nursing home so I asked to have an acute rehab center check out Marie to see if she would qualify for that. The social worker agreed.

fresh start

I called the social workers supervisor and was granted a new person to work with. The supervisor told me that the new social; worker would be contacting me shortly. There was no complaining about the last social worker or that lack of help. I was hoping a fresh start with a new social worker could work.

that was that

When the social worker started giving me one word answers and just kept repeating the same statement over and over, I knew the meeting was over. I ended the session and asked how I could get a different social worker to talk to. She gave me her supervisors name and telephone number, and that was the end of that.

unwilling or unable

I wanted Marie to come home. As long as the infection is cleared up, there is no medical reason to keep her in the hospital. At this point though, I still didn't know if the infection was cured. The social worker wanted me to make a decision quickly. I didn't like that the social worker approached me and wanted to move Marie so quickly. I felt that she should have come to me with enough time so that I could understand the process, and what insurance coverage Marie was entitled to. I needed help and the social worker was to give me that help.

medicaid

I decided to change the direction of the conversation and asked about insurance coverage. She explained that my insurance would cover for ninety days. When I inquired about what would happen after the ninety days, she said we could file for medicaid. Even though the medicals were trying to sell me on the fact that Marie should only need a few weeks of care, to help her get back on her feet, I didn't believe that was possible. I didn't want Marie to be pushed into the system with no way out. It really felt to me that Marie was about to be institutionalized.

refused recommendations

My meeting with the social worker started bad and got worse. She wanted to know if I had picked out any nursing homes and I wanted to know if she help me decide based on what type of care Marie would need. She refused to give any recommendations or information at all and I continued to express that didn't know how to pick a place. This was going no where and both sides were getting frustrated. we needed to work together but we were putting up walls.

slow it down

What was coming across to me was that Marie would be getting a few hours of therapy each week, so why a nursing home. I wanted her home. This whole thing seemed to be steam rolling. Must find a place, must find a place. I decided to slow everything down, so I could understand all the options. That week I called a meeting with the social worker to discuss the possibility of Marie coming home and doing rehab as an out patient.

I wanted to know what the insurance coverage would be, and if it didn't work out would I still be able to admit Marie to a nursing home.

no information

The social worker was supposed to help me find a place for Marie. She did this by supplying me with brochures. I asked for some guidance but didn't get any. The social workers, apparently, are not allowed to offer suggestions or give you any information that may influence your choice. She told me that I could arrange for tours of the facilities, or ask family and friends for their input. But she in no way could offer me any recommendations. All she could do for me was wait until I picked out some of the facilities. Then she could check for space availability and help me understand what the insurance coverage would be.

This whole process just didn't seem right to me.

she needed care

Over the course of a week, I met with therapist that had been seeing Marie for speech, physical, and occupational therapies. The consensus was coming back that Marie would need to be transferred to a place where she could get more intense therapy to help her prepare for a return to home. The doctors all agreed with this assessment and felt it would be for a few weeks.

What they were talking about was admitting Marie to a nursing home. Once the spinal fluid infection was cleared up there would be no reason to keep her in the hospital. But she wasn't ready to go home. Marie was weak, confused, and needed help doing many daily things. She needed care, but not medical care.

today 9/2/10

We're waiting for a call from the oncologist. He wanted to discuss the results of the latest chemotherapy. So here we are in the waiting mode again. it's just something you never get used to. Instead of worrying about it we decided to go out and have a nice day. We had a lot of fun and that's really all it's about. Isn't it?

today 9/1/10

Today Marie had her MRI and we met with the oncologist. I really don't feel like talking about it right now, and I'm forcing myself to write. We'll talk about the results at a later time.

in the dark

I was put in touch with a social worker from the hospital that works with the neurological patients. After I complained to her about what I considered to be a lack of communication, is when I began receiving phone calls. They included a call from patient relations, the plastic surgeon, 3 different rehabilitation therapists, the oncologists office and the neurosurgeon. Each different area seemed to believe they were doing the right things and wanted to know if I needed any information or had any questions.

That was good follow up but none of them ever seemed to get the fact that they were communicating with each other but not to me. Marie was never able to relay any information about her visits with any of these people and none of them ever understand that. They all acknowledged that Marie was confused and had memory issues but none of them ever considered that Marie wasn't able to tell me about it. So I was in the dark.

a daily calendar

Talking with the team lead nurse I expressed my concern that I believed Marie needed to be receiving rehab now. You could have knocked me over with a feather when she told me Marie was getting rehab. Speech, occupational, and physical. Sometimes the therapist would come to Marie's room and sometimes Marie would be taken out of her room.

Let me explain how I felt at that time. I was very glad Marie was getting some help. Bit it hit me that even though Marie was on neurological floor, the medical staff didn't seem to get that Marie's memory was so bad that she wasn't able to tell me that she was getting rehabilitation. Marie had been telling me that she had been getting surgery. Even though I question the nursing staff about the supposed surgeries none of them ever made the connection that Marie was really describing her rehab.

I pleaded with the team lead nurse, that the nursing staff needed to keep me informed about the things that Marie was going through when I was at work. We talked about a daily calendar that the medicals could fill in when that saw Marie so that I would know what was happening each day.

would patient relations help

The person in Patient Relations was very business like. She wasn't apologetic or sympathetic. She just gathered my concerns and told me the names of the team lead nurse and the floor manager. She asked me if I would like them to contact me and I said yes. I was naive. I thought that Patient Relations would help me work through issues, but it wasn't like that at all. This was going to have to be me versus a hospital and its staff.

If I remember correctly I talked with the team lead nurse first. I explained my concern with what I considered a lack of communication. I felt the team lead nurse was somewhat defensive of her staff. Not like a bear defending her cubs, more like a parent listening to the teachers complaints.

what's going on

As Marie gets more "with it", I begin to question why she is not getting any rehab while in the hospital. When I would arrive after work to visit Marie, she would tell me that she had more surgery that day. Of course I would check with the nurse to see if any doctors performed surgery? That answer was always no. But talking to the nursing staff was too much like pulling teeth. I do not think they were hiding anything from me, although at that time I didn't know what to think.

I was growing more concerned about Marie's confusion. How would she be able to function if she had these delusions about daily surgery. I believed they needed to start rehab right away, so I called Patient Relations to help me find out what was going on.

10/03/2009

There has been no sign of spinal fluid leakage which is a good thing. Finally a good thing. A possible CT scan is planned for that day to check the brain status. Marie is having a sleepy morning so I take the time to talk to the day nurse. He explains to me his understanding of the social worker process and after hospital care that Marie may need. I am told a social worker would be contacting me to explain what Marie would qualify for.

The medicals are talking about Marie leaving the hospital and going some sort of rehab center for a few weeks until she is able to gain some strength. I'm not sure that they have cleared up the infection though. And that's why she came to the hospital in the first place.

10/02/2009

It's now October 2, 2009. Marie has been in the hospital for three weeks. It's also three days after the plastic surgeon did her repair. There is a drainage tube removed from Marie's head and now the process is to wait and see if there is anymore spinal fluid leakage.

we're just beginning

I'm glad I have that off my shoulders. Unfortunately lack of professionalism was just the start and I haven't hardly even touched on an insurance case manager or hospital social workers. We will get into all of that but tonight I think I've said enough.

time to be ashamed

This was a case that the cure turned out to be as bad as the disease. All the radiation created a condition where the skull and scalp were not healing from the latest surgery. It had been a month since that surgery and a plastic surgeon was needed to repair a hole. None of the medicals believed that a leak was occurring. That allowed a staff infection to enter my wife's spinal fluid which almost killed her. I had to make a resuscitation "call" and then a week or two later my daughter witnessed her mother going through a code blue. To cap it all, a nurse at the code blue, verbalized her excitement for code blues, because that's when the fun starts.

I can tell you that my daughter didn't have any "fun" at the code blue and I know that I didn't have any "fun" watching my wife suffer. I was disappointed with the doctors and the hospital nursing staff on the neurological floor. There was a lack of professionalism and decorum. They should be embarrassed by their actions and ashamed of their treatment to my wife as a patient, and our family as caregivers.

probable cause was radiation

Okay the last few posts my daughter talked about the code blue day. Now I want to get back to the spot where Marie was waiting for enough air to come back out of her head so plastic surgery could be done to fix the leaking hole in her head. CT scans continued to show a decrease in the air so the plastic surgery was finally scheduled. Marie went into surgery which lasted about an hour or two.

When the plastic surgeon came out to see me, she explained that she found a hole in Marie's skull that was created by the omayan reservoir. When the reservoir was removed the hole that was left behind never healed. The probable cause was the previous treatments that Marie had to remove brain tumors.

time for a visit

Those last five posting was from our daughter who wanted to tell it in her own words. The "day" Marie had a code blue.

She had been in the hospital just a couple of weeks at this point. Admitted with a spinal fluid infection. Us having to "make the call" for resuscitation on her first night. A "discovery" of a spinal fluid leak. A spinal tap, a code blue. Surgery to correct the fluid leak that didn't work. Facing plastic surgery. All the time still trying to clear up the spinal fluid infection.

And then, the relatives decided it was time for a visit.

isn't this fun?????

I had to wait an hour before they seemed to remember I was in the room. All I got for an answer was, “We don’t know, that was weird” and “the doctor is on her way”. They took my mom for a CT scan to see if the brain was okay. That’s when I called my Dad to inform him of the day’s excitement. He came soon after to make sure what happened and see the doctor. If you miss the doctor’s visit, the information shan't be repeated.


I was talked to by the on-call doctor who told me it could have been a response from her growing tumors. Even late on, the main doctor gave a vague, “it could have been anything” response. Nice. Only 7 years and I could get paid to tell families that I have no clue what that was but whatever more meds will fix it!


The doctors did help stabilize her but were never willing to call the episode what it was a seizure. I never saw her have one but my Dad described them and that was it.


This was one of the worst days of my life. And there is a kicker; every story needs a kicker, right? When the blue button alarm was called off and the nurses left the room, just outside the door, one nurse remarked to another that she loved when thing’s got exciting and was disappointed that the fun was over.

on-the-fly

The mythical blue button instantly calls dozens of people: nurses, doctors and students and even the priest. Her room filled up with two minutes, not everyone could fit. I counted, there were 30 people. So many people were in the room, I was pressed up against the window.


The nurses got her back into bed to hook her back up to the machines. Then we learned her vitals were dropping. They started consulting, called her main doctor, and gave her medicine, all kinds of quick, on-the-fly procedures they trained for. I was very immediately distracted by the priest; I think that was on purpose. He talked to me so I couldn’t tell what was happening, but they were still poking and prodding. I was surprised they let me stay in her room while they did this.

the blue button

It gets stranger. The nurse called a back-up in to help get her back in bed. They asked her to sit down in the shower-seat. She did, but kept trying to get up. They kept pushing her down and asking her to listen to them. This woman, my mother, could take out two string-bean nurses while being impaired and weak in the hospital. At this point, I started freaking out. What was going on? She was fine two minutes ago.


Now they brought in a third nurse, a guy. They asked mom to lie on the floor. They were going to pick her up on a sheet and put her back in bed. They called in one or two more people. Her presence of mind quickly decreased. She was definitely having some kind of an attack. This is when the nurse pushed the blue button.

the sh - - hit the fan

It was maybe 10 minutes to 2 and I was getting ready to leave for the day. My Dad would arrive at 5:30 and I wanted to finish my homework. This is when the shit hit the fan. My Mom wanted to go to the bathroom. The nurses had to be told because she was hooked up to bed alarms (the stupidest thing in the hospital because they ignore them). The nurse come in, helped her to the bathroom and closed the door over, but not shut. I waited so I could say goodbye. I waited a good 10 or 15 minutes. The nurse wandered back in and went to check on her. When she opened the door, my Mom was over by the sink, just looking around.


She wasn’t responsive. The nurse thought she needed help at first. Oh no, things got much stranger. She had no idea where she was or what to do. Then she wouldn’t even speak. I was watching all this from across the room wondering what was happening. I could see as she shuffled around the sink, her eyes dilated, to the largest possible. I could see her pupils from out the bathroom, across the room and past her bed. The other side of the room!

strange but true

This next section is considered strange but true. Since I wasn't there but our daughter was, she will tell the tale.

I remember I was taking my Astronomy class so it must have been between September and December of last year. I think it was mid-September. I was visiting my mom as many days as I could in the hospital. This day, I remember, was a Thursday because that’s my day off. I went to the hospital at 11am. I went to the 5^th floor, all the way to the end of the hallway and saw Mom spaced out in her bed like normal. Well normal for this 30-day period. I got her to agree after much delay to some lunch. You could order a patient up lunch like room service. When she got her lunch, I went to eat in the cafeteria.


After the meal, I stopped at the computer area for visitors. I wanted to get some homework done. Unfortunately, these computers didn’t have flash player, so I couldn’t do much work. So, I wound my way back up to my Mom’s floor.
She looked confused and asked about lunch. Explaining that she already ate had become common occurrence. She seemed confused today. When she first got to the hospital she was out of it, the next week she was better, then she got moved to a new floor and seemed to get more confused.

I won't pay you

It took a few days and Marie started to come out of it. The surgeon ordered another CT scan which showed the amount of air in Marie's head was cut in half. He had a new plan now. Continue to monitor the air reduction and when it's low enough, a plastic surgeon would go in, find the hole, and seal it.

When the plastic surgeon came to visit and do a preliminary examine she was totally shocked when I asked her if she took our insurance. Nobody ever asked me that before. So I told her, how about if you do the work, and then you tell me that you don't take my insurance, I won't pay you. The plastic surgeon had her office take care of the insurance the next day.  

one thing at a time

All we can do now is wait and see. No one really knows if the spinal fluid leak in Marie's head is sealed. Nothing is coming out right now because the head has so much air in it. The hope is that the air will escape the same way it got in, but that would mean the hole in Marie's head would still be there. But one thing at a time. Wait a few days and do another CT scan. If it does Marie should come out of the deep sleep.

the same as eight years earlier

The fluid drains from Marie's spine and the nurses monitor the output. But Marie's condition worsens. She goes into a very deep sleep. I described it as a semi comatose state but I don't really know if that's what it is. All I know is the nurses can't wake her up. This is virtually the same as eight years earlier when Marie couldn't wake up after the doctors adjusted the height of the spinal fluid draining from her head after her first brain surgery.

The surgeon decides to have a CT scan done to find out what's going on. The results are shocking. Marie lost so much spinal fluid in her head that air rushed in.This has become a dangerous situation. The surgeon pulls the lumbar puncture out so no more spinal fluid is released. They can't afford to have any  more air enter the head.  

back to today 8/12/10

Marie had chemo treatments yesterday and today. Everything went smooth. What stands out the most, is that all the chairs were full. And they have quite a few. Sometimes there is hardly anyone getting chemo. I haven't been able to figure out why some days are busy and some are not.

If your car engine sprung a leak

The important part of draining off spinal fluid for Marie was not to over drain . I heard the doctor give the orders to one of the nurses. He didn't want to exceed a specific amount of fluid per hour. The nurses were supposed to monitor that output. Remember this procedure was administered because of the leak in Maries head.

At this point I had convinced myself that the area of the leak was a good candidate as the location that the infection may have entered Maries spinal fluid. As painful as the puncture was, the leak needed to stop and the hole had to be plugged. But messing around with the level of spinal fluid worried me.

Here is the way I think back on it now. If your car engine sprung a leak, and gasoline was coming out of the  top of the engine, that would be very dangerous. So you puncture the fuel line in order to let the gas out there. But you don't want the gas to come out to fast because your engine would stall. You would have to let only enough gas out, so enough would still get to the engine to keep your car running, but not enough to reach the top of the engine. Did you get all that.?

hoping for better results

The surgeon had Marie turn on her side so that he could puncture her lumbar. The goal was to get into the spine and drain off some of the spinal fluid. when he started he told Marie that she was going to feel some pressure. Never ever have I seen a person scream in such pain. Not "ow" that hurts, but a blood curdling scream. She was in pain that I can't describe. I wanted to help her but I couldn't. When each of my children were born I was there. This pain appeared much worse.

Finally it was done. The puncture was successful and fluid was running through a tube from Maries spine to a bag hanging on an IV pole. All I could think of was after Maries first surgery, when this same surgeon changed the height of the spinal fluid drainage tube that was coming out of Maries head. That first time she ended up having seizures. I hoped for better results this time. 

a two pronged approached

Since the surgery to repair the spinal fluid leak didn't work, the surgeon decided take a two pronged approached. First he was going to re-stitch the area while applying some adhesive to the wound. That was the easy part. He was also going to do a lumbar puncture in order to drain off some of the spinal fluid. By lowering the amount of spinal fluid he was hoping to keep the scar dry and help it to heal better. By the way, a lumbar puncture is a spinal tap.  

The lumbar puncture is a painful, painful procedure. There is just no way to prepare for it.

spinal fluid leak came back

It only took two days before the spinal fluid leak came back. The doctors seemed optimistic that they could seal the leak. Tighter stitches, a little glue. If all else failed a plastic surgeon could be called in. I never had any doubts that they could fix it. What keep going through my mind was how did Marie get the infection in her spinal fluid. Was this how the infection got in? My goal became to catch up with the infectious disease doctor and ask him.

nurses put in for a room sitter

After Marie's surgery to repair the spinal fluid leak, she had a big bandage on her head. She was kept slightly elevated to keep the area dry of spinal fluid, so that the stitches had the best chance to heal. Marie's confusion and poor memory were still the same.

The hospital didn't want Marie to get out of bed on her own, and risk getting hurt, so they set an alarm on her bed. If she tried to get off the bed the an alarm would sound and the nurse would come to investigate.
As many times as the nurses would tell Marie to press the button if she need to get up, and as many times as Marie would say okay, she would never remember to call for the nurse. She would never remember that there was any conversation at all.

That was a big frustration for me, and one of the biggest differences that I found between the oncology floor and the neurological floor. Marie's poor memory wasn't her fault. On the oncology floor she was treated with respect and consideration for what she was going through. On the neurological floor she was just another patient with a brain problem. At times Marie was so fast that she could get out of bed before the nurse could react to the bed alarm. As long as she wasn't in danger she wasn't a problem. So the nurses put in for a room sitter. Their responsibility was to keep Marie in bed and call for help if she got up.

it didn't happen on my shift

It had been less than a week that Marie was in the hospital, but it had already been a lifetime. She had been diagnosed with an infection in her spinal fluid, which wasn't clearing up. Her vitals were so inconsistent the first night we didn't think she was going to make it. She had been transferred from a chemotherapy floor to a neurological one. A spinal fluid leak was discovered and surgical repair was performed.

Marie had four doctors by this time. The oncologist that admitted her to the hospital, an infectious disease doctor, a surgeon and an internist. She also had nurses, technicians and other helpers. Even with all these medicals involved with Marie I felt that I had the least amount of communication than any time in her entire brain tumor saga. It was difficult to see any of the doctors because I had to work during the day. The nurses did not offer much information at all. And if you asked them a question it seemed like the answer would be things like, I don't know, it didn't happen on my shift, or I wasn't here yesterday and I won't be here tomorrow.

surgery

On September 16, 2009 Marie had surgery to re close her scar from the brain surgery that happened in August. That's where the leak of the was coming from. After Marie's nurses discovered the leak, Maries surgeon in Omaha, decided to re-suture the incision. Obviously that incision did not heal properly. I was glad that Marie was getting help ,but it still didn't seem to make sense to me. Spinal fluid must be coming from inside the skull. At least that's was I was thinking. If the medicals re-sewed the scalp, wouldn't the fluid still be coming out of the skull?   

guess what

It was only a day or two on the neurological floor when the nursing staff saw a large amount of fluid on Marie's pillow. They suspected a spinal fluid leak. The nurses reported their findings to the doctor. I'm not sure if they told Maries surgeon or her oncologist, but both of them were well aware of the suspected leak, since neither could fine the leak a week earlier.

When the nurse informed me of their discovery I was relieved that a medical actually found the occurrence. I was told the surgeon was coming in to inspect Maries' scalp for a possible place that fluid could be coming from.

Sweating, yeah right.

helping Marie

It was obvious that Marie did not know where she was or what the date was. I starting writing the day and date on the blackboard each day to help Marie. I made sure that she saw my cell phone number on the board and told her to call me anytime while I was at work. Unfortunately, Marie's short term memory was so bad  she didn't remember to look at the blackboard. When she did none of it made sense to her.

Things would happen such as I would get to the hospital after work and Marie would tell me she was starved because she didn't have any diner. When I would check with the nurse they would tell me things like she just finished dinner. Or she said she didn't want any. Marie's memory was so bad she couldn't remember if she had eaten or not. I asked the nurses to help me by writing on the blackboard simple things like Marie had diner or a doctor came to visit.

I could never get the nurses to comply. I don't think they intended to be difficult. But the staff changed so often.

adapting to the new floor

I found it difficult adapting to the new floor. The nurses had two 12 hour shifts. They went from 7:00-7:00. I would work during he day so I got to the hospital about 6:00 each night. After Marie would fall asleep for the night I would go home to take care of the laundry, bill, and other chores. On the days I was off from work I would spent the entire day at the hospital.

Everyday that I worked, I would call the day nurse and ask her if there was any report from during the night. I also made sure she had my cell phone number, and made sure the nurse knew she could call me at anytime, for anything. Before I went home each evening I made sure the night nurse also knew to call me anytime for anything. I also put my name and cell phone number on the blackboard in Maries' room, and made sure every nurse knew where it was.

I never received a call from any of the nurses.

change floors

After a couple of days on the chemotherapy floor, Marie was moved to the neurological floor. It's virtually a brand new floor with an outstanding waiting area for visitors. But you know what they say. You can't tell a book by it's cover.

Marie has a private room with the latest technology. What's noticeable right away is how young the nursing staff is. Youth isn't the issue, it was the experience. On the chemotherapy floor the nursing staff appeared to be a mix of newer and more experienced nurses who were quite comforting to the patient and family members. But on the neurological floor things were more by the book. Following procedure was the important thing. I'm sure medical needs were given, but emotional needs didn't seem to be considered. Fortunately Marie didn't notice because of her confusion, but I was uncomfortable from the beginning. It was like being in a different hospital. 

clear the infection

The next few days were somewhat uneventful. Marie was on the chemotherapy floor but she was no longer receiving chemo. She was getting antibiotics for the infection and she was started on steroids. Marie was in a state of confusion not knowing where she was, the city or the year. None of that was important at then, just needed to clear up the spinal fluid infection.

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.