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.