hospice

It's been almost 5 months since the last post. Things have been happening. Seizures? Maybe. Hospital? Definitely. Rehab, more rehab, and then a calm realization.

Marie is now in the Hospice House here in Omaha. I promise I'll get you all caught up. Right now I can say she has been in hospice for 6 weeks with more time to come.    

just wait

We are waiting for the arrival of the clinical notes and the MRI from the July trip to NIH. Then the medicals, here in Omaha, will make some decisions. All we can do now is wait, It's too bad the tumor isn't waiting.  

why no news

It's hard to post when things are in the middle of happening.

what a day

Friday the 13th has finally reached our neck of the woods. We went back to Bethesda this week and returned on Friday. Our flight leaving DC was delayed a couple of hour because the crew could not find the co-pilot. That's right, they didn't know where he was and they never told us either. Then our connection from Chicago was delayed due to thunderstorms. Not unusual during a hot summer. When we boarded our plane we were then told we had 2 flat tires and they made us deplane to fix them. We finally took off about 1:00am. That still didn't match with the news that the tumors are growing and that carboplatin is no longer an option. Great the only thing that has works so far.

infection

This week Marie battled an infection. It crept up for nowhere. She hasn't had that happen since the 2009 episode of staff infection. It appears to be under control, but why did she get it. Is it because she no longer is getting the Nuelasta.  The medicals tell me no. Oh wait, I don't think you know about the Neulasta story.

yes more life

I'm convinced that the National Institute of Health added a year. And that's by stopping the tumor from growing. Actually there was even some shrinkage. This last MRI in June 2012 didn't have the same positive results. There were mixed results. Some tumor growth and some shrinkage. Not tumor shrinkage. If not tumor shrinkage then what? Necrosis? Maybe. We go back on July 12th.  

back to now

I can bore you with continuing posts since last September but I won't. We made a total of three more trips, I think and they were pretty much the same. Until June 2012. More on that later. Each of these trips was an exciting to us and the medicals. They were helping. The treatment was working. Shrinking tumor. More life?

process

The process was to be a simple one. Two or three chemo treatment then back to NIH for an MRI and doctor visit. We were to fly from Omaha to Washington on a Thursday, get the MRI that evening, see the doctor early on Friday morning them fly back to Omaha Friday afternoon. All in all it was quick and effective, but for Marie it was exhaustive. But it was working, so what the heck.

september 2011

The MRI showed positive results. The tumor was stable. It stopped growing. In my mind it meant no growth equaled more life. I didn't know if that was true but the medicals at NIH seemed pretty happy. THe orders were to keep doing the carboplatin and come back in 8-12 weeks.

wow

Wow, it's been nine months since the last post. No, we haven't gone anywhere. We're still here and Marie continues to battle a stubborn disease. A lot has happened and more is coming. The reason that I have not been posting is not because nothing has been going on, Quite the contrary, there have been trips, MRI's, treatments, insurance hassles, changes, and more changes. Successes and disappointments have rounded out the roller coaster last nine months.  

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.