nervous time

Nervous time. Marie gets her MRI on Friday. In Bethesda MD.

Long way to go for an MRI? Not if it's a negative result. At least we'll be in a place where there's hope.

back to bethesda

This week we go back to the National Cancer Institute in Bethesda. First for an MRI and then we meet the doctors.

$13,500

After each carboplatin treatment, Maries get's a shot of a drug called Neulasta. The purpose is to help boost the production of her white blood cells. She's had three of those shots which cost $4500 each. So far our insurance has denied payment on the first two, and I don't think they've even received the third yet. If they deny all three, I will own $13,500 just for those shots. If anyone has any ideas, let me know.

chemo today

Marie Had chemo today. Her white blood count was low, but still good enough to proceed with chemo. In the next few week we will go back to Washington for an MRI at the National Cancer Institute.

one more chemo

More than a month has past and Marie is handling the chemotherapy well. She's had two of the carboplatin treatments and two Neulasta booster shots. On Wednesday she will get her final Chemo treatment before the next MRI. That should be done about mid September. Is it working or not? I can't tell from anything that I'm seeing on a day to day basis. But at least she not having any side effects of any significance.

so far so good

Today is Saturday and a few days after Marie's chemotherapy and blood cell booster shot. Up to this point she has not had any after effects except for some redness on her face after the chemo. And even that went away after the next day.

free pie day

I will fill in the last two weeks in bit. Let me start with Marie began chemotherapy today. Carboplatin is the drug of choice this time. The whole thing took about an hour and a half. First a steroid was given, followed by anti nausea medication. Finally came the carboplatin. After it was done we went to Village Inn to get something to eat. Wednesday is free pie day.

Tomorrow she gets a shot to help boost the white blood cell count.

back from nih

We returned yesterday from NIH. They confirmed that the tumors had grown and had opinions on treatments. No more surgery. No more radiation. More chemotherapy. They had opinions on what types of chemotherapy to do as well. Marie has now become a patient of NIH, although her treatments will be done in Omaha. Then we will travel back to NIH in about 9-10 weeks to see if there is any progress.

like yesterday

Today we received the notes, pictures, and comments from the Gamma Knife treatments that happened 9-10 years ago. We'll be taking them with us to the National Institutes of Health this week. It amazing how much you find out that you remember and how much you don't. This happened quite a while ago but it seems like yesterday.

what's left

We got the MRI done and I sent it ahead to The National Institutes of Health along with reports, results, and all kinds of medical stuff. Marie's appointment is Friday morning and this is the most nervous that I've ever been. The last surgeon said he wouldn't recommend any more surgery, the last radiation oncologist said no more radiation, and the chemotherapy hasn't worked. What could possibly be left. We'll see.

yes

I get a call today from the Omaha oncologist's office and they will set up an MRI for Marie so we can schedule the appointment with the National Institute of Health. Spirits are up.

we're going to bethesda

After a couple of screening calls Marie was inviting to come to the National Institute of Health for a consultation. That's great news. At least we will be doing something instead of nothing. She needs to have an MRI, which I have to arrange. Once the MRI is scheduled I can call NIH to set her appointment. I have a call into Marie's oncologist, here in Omaha, to see if he will order the MRI.

nih

Enough of doing nothing. On Friday I spoke with someone at the Neuro-Oncology Branch of the National Institute of Health. She took a quick history of Marie's brain tumors and said the next step would be a call from a nurse practitioner. That person will gather more information including Marie's current state. I look forward to that call. I am expecting it on Monday.

home again

We went to Disney and we came back from Disney. But, the tumors have stayed. You can't run away, just live for now.

money

I would rather see that any money contributed, or raised for research, on behalf of someone with a benign brain tumor, be used for research on that type of tumor. And if it's not going to go for benign tumors, then I would rather see the money used to care for patients that have benign brain. And to help cover expenses that the family will have because of the loss of wages and cost of treatments.

research

In the case of Marie's tumors, it started as one tumor and recurred. Then it began to come back in as multiple tumors. And not it has seeded with many tumors growing. Why the progression from bad to worse? Is it a disease that runs a course? Is it a case of not finding the correct treatment? What information is being gained to help a future victim? I don't believe that information on benign brain tumors is being kept. I'm doubting that not much, if any, research is being done.

why

Brain tumors are a vile attack on an innocent victim. I don't ever remember any doctor talking about what to do to cure the brain tumor, just, here is the treatment that we suggest for the tumor. I can't get an answer to the question "what causes a brain tumor?" They can tell you what it is, but not why it is.

florida

Three weeks and three days until we leave for Florida. This will be the first family vacation in more than a dozen years. Everyone's excited and ready to go. But that doesn't mean that we've forgotten about the brain tumors. We're actually excited in spite of the tumors.

chore

Yes, Disney World is on the plan as a destination during our "let's live tour". That's my name for how we are going to look at the future as a family. The last ten years have been brain tumor treatments, therapy, and recovery. Jobs suffered, relationships strained, life became a chore instead of a joy.

live for today

With all the possible treatments having such possible damage to the quality of life we are living for today and having some fun. We are going to go on a trip to Florida in May, as a family.

possible damage

It took about a week, but the radiation doctor did call. The news was not what we wanted to hear. With Marie already having so much radiation, and tumors now on both sides of the brain, the probability for additional damage is too high to really consider more radiation.

what's a few more days

I hadn't spoke to the radiation doctor since 2008 but the receptionist seemed to know who I was and patched me right through to him. I described to him what had gone on the last couple of years and asked if he would consider looking at the brain scans and give us his opinion on additional radiation. I agreed to drop off the dvd to his office, and he said he would call in a few days.

gave him a call

The option of surgery could leave Marie with difficulties and increase negative quality of life. The chemotherapy could include a multiple of different drugs but the treatments would be speculative only. I decided to go to the doctor in Omaha that did two of Marie's radiation treatments in the past. A few weeks ago I looked up his phone number and gave him a call.

current options

I did not want to write while we were checking all of Marie's options. We spoke to the oncologist in Omaha and had the brain scans sent to MD Anderson. In the discussion with the oncologist there I learned that the options could still include surgery, chemotherapy, and radiation.

time to write

Okay it's time to start writing again. At this point treatments are done. Done. Finished. Over. It's time to go with living life. the tumors were continuing to grow at the time of the last MRI, which was December 2010. With no more treatments, there will be no more MRI's.

second opinion

Okay it's been quite a while since writing but a lot has been going on. None of the chemo treatments have worked so far. Our oncologist in Omaha said that it would be okay if Marie decided to stop any further treatments and just live life. He did assure us that if she wanted treatments, he would do them as long as they didn't hurt her or reduce her quality of life. We thanked him for his honesty and asked him to check with MD Anderson to get their opinion of the situation. I felt that would be our way of getting a second opinion.

options

Okay I finally got word from our oncologist late yesterday. We have some options, although none of them right now seem to be very promising. He felt that we might want to go back to Houston for a consultation so that we really understand the good and bad of each option.

no word

Marie continues to tire out quicker than in the past. No word from the medicals yet.

changes

Wow, I wonder what's taking so long. I'm seeing some changes in Marie. More difficulty in getting out of a chair, bouts of vomiting, memory problems.

nothing

I know you won't believe it but we still have not heard MD Anderson's opinion on Marie's last MRI. That's all I have to say at this point...

physical

Tomorrow Marie will have a complete physical with our family physician. It's important to have a doctor watching her from now on in case there are no more treatments in store for Marie. This way our family doctor will have a good representation of her current health and then be able to judge changes as they occur whether they are due to the tumor or future treatment.

If the tumors continue to grow, then I would expect all the original symptoms and problems to occur. With a medical professional following her condition, as it changes, we will be better prepared to deal with things as they happen.

unforeseen

Okay I received a message from Marie's oncologist in Omaha. MD Anderson had an unforeseen delay in Marie's case. We should have some news soon. This is when it's fortunate that it's a slower growing tumor.

doing well

Guess what? Still no news. Marie's doing good anyway

hope

Hope. No hope. Some hope. No hope. Maybe some hope. Wait and see if there's hope.

So goes the life of this brain tumor patient and caregiver.

monday

I spoke with Marie's oncologist on Wednesday evening. He's been in contact with the oncologist at M D Anderson and it sounds like they may have an idea. Anyway the doctor at M D Anderson was going to preset the case again this week to the tumor board. Our doctor here in Omaha thought that he should have something to tell us on Monday.

always

Still no news and nothing happening. Marie, though is doing good. We're going out to dinners and movies. Just generally having a good time. Always enjoy the good times.

no news

Still no word back from M D Anderson. That's not unusual though. In the past her case was presented to their tumor board. I believe it meets once a week. I think they meet on Friday's. Maybe we'll hear something this week.

life doesn't stop

When you're reading the blog about the past ten years, waiting for news was just a posting away. But when you live it in real time it's frustrating and nerve racking. You don't know what you will hear or when you will hear it. Life doesn't stop, it pushes on. That's great when you're busy and time goes fast. When you're waiting to hear what life holds it drags on slowly.

today 1/12/11

I talked with Marie's oncologist in Omaha today. He hasn't heard beck from M D Anderson yet but he promised to check with them again. I'm hoping no news is good news at this point.

our goal

Marie had a doctor appointment today with our family physician. He's going to keep seeing her on a regular basis, so this way someone would be staying up with her general health. If we can't get rid of the brain tumors, we can make sure that some other problem doesn't start, without our knowing about it. As the tumors grow any thing could happen. Our goal now is the best quality of life.

too busy

Things were hectic at the time. Two teenage children, both of us working and taking care of a house. We were too busy for an illness. That happens to other people anyway. Not us.

How could I allow symptoms like that to go unchecked.

fainting

Before the tumor. Here goes.

There are subtle things that happened before the discovery of the first tumor in October 2000 that should have tipped us off that something was wrong. About two years prior things started to occur. I would come home from work and in the normal conversation of the day, that a husband and wife would have, Marie would mention-oh yeah, I fainted in the shower today. Of course I would question what do you mean that you fainted. She would explain how she blacked out for a moment and sometimes how she would also throw up.

I believe now that she was having seizures caused by the tumor. The medicals said that the original tumor was growing for 5 to 10 years. At the time we talked about the fainting spells and decided that she was taking showers that were too hot or she ate something bad. I know I mentioned this in an earlier post but it still bothers me. Why didn't I recognize this as a much more serious issue.

what happened first

It's actually difficult to write the blog right now because there is absolutely nothing happening. No treatments, or medications for the tumors. We are in a point of limbo. Waiting on MD Anderson to contribute their opinions on what, if anything else Marie should do. As long as we're waiting on the medicals I thought I could tell a little about what happened before the tumor was diagnosed.

time to recover

Marie's shingles appear to be changing. I'm hoping that means they are getting better. The medicals will be telling us what else we can do. Or should do. Being New Years weekend I'm sure no one is around right now, so we just have to wait. My guess is that we will wait for a couple of weeks. In the meantime there is really nothing to do except let her body recover from all the treatments and medications.

start new

Happy New Year.

Let's hope so.