here I am

I know it's been a while, but we have been going through the current chemotherapy treatment. Marie has been a trooper dealing with the sessions, and any side effects. I have been dealing with the insurance company, and the hospital's financial department.

Why does there have to be stress and confusion. I believe it's because cancer, or brain tumors, are big business.

It's all about the money.

back again to houston

We finally had appointments scheduled at MD Anderson. We would be there in mid July for tests and consultations. That would be three months after Marie had an issue with her left eye. That eye was still at half mast, but didn't twitch anymore.

We didn't know what was going on with Marie. The surgeon here said that it would require immediate surgery, but there appeared to be no sense of urgency. No communication. Just a simple email or phone call that things were being looked at would have been enough. There were more tumors than ever before and it seemed to be developing quicker.

waiting, waiting, waiting, waiting

I'm not sure what immediate surgery means to some, but to me it means, get together and plan the time. It took two months before we heard from Houston. You have to remember that MD Anderson didn't say immediate, that was our surgeon in Omaha. Still it seemed excessive. We'll never know why. Did Houston feel it wasn't so critical. Or was it just that the doctor was out of town? Who knows? 

getting information to houston

Marie's MRI was on Wednesday and the surgeon was going to send the information to Houston that day. He wanted us to check back with him on Friday.

Friday came,and when we called the surgeons office here in Omaha, they realized that they didn't think they ever sent to information to MD Anderson.

I called again on the next Wednesday and the doctors office had not heard from Houston. We were asked to call on the next Tuesday. Marie's eye was still at half mast and I was concerned. I waited until Wednesday to call back and the doctors office still hadn't heard anything. Marie's eye issue was still unchanged.

It was now early May 2009. It had been two and a half weeks since the MRI. The surgeon thought she should have immediate surgery and we still didn't know if MD Anderson was even in the loop yet. The doctors office said they would call Houston.

mri

The MRI showed change. The tumors looked larger, and it showed what might be a total of four. The twitching in Marie's eye had subsided, but the drooping eyelid remained. The surgeon felt Marie should have surgery right away. He would send the information to MD Anderson.

I was concerned that the eye twitching was some sort of seizure. The surgeon didn't think so. The physical evidence of the drooping eyelid was present, so we all knew something was going on, but it couldn't be tied back to the brain tumors. It couldn't be ruled out either.

waiting, waiting, waiting

The plan was to wait until June for an MRI. But in April, Marie had a very unusual occurrence. Her left eye began to twitch. It was strong and long lasting. Then the eyelid began to droop. She found it difficult to keep her eye open. We called the surgeon, here in Omaha, and he ordered an MRI immediately. Something was happening, and we weren't going to make it till June.

wait some more

It was decided by our surgeon in Omaha that the best thing for us to do was watch and wait. So that's what we did. We were pretty sure that multiple tumors were growing. Just months after surgery. December turned into January which became February, then March. Finally another MRI, it confirmed the surgeons opinion, that the tumors were growing. Since they are slow growing, he felt, we should wait more. He explained that the tumor appeared to be seeding. He used the example of throwing grass seed onto the dirt, and many of those seeds taking hold.

Seeding was a new term for us to learn. Great, after nine years, a new term.

clarification

Before I go into 2009, I wanted to express, that the events from 2009 is why I named this blog brain tumor nightmare. I still can't believe some of the things Marie went through. The year starts with hope, support, friends, and family. It moves through tragedy, anger, and dispare. It transitions into more anger, resolve, and acceptance. The year of 2009 affected both Marie and I in many ways that I will never, ever forget.

waiting

It took some time before we heard anything. I believe it was in December. We heard from the surgeon in Omaha. He felt that Marie had more of the same type of tumors. If they were tumors, they were small. He wanted to take a position of wait and see. The MRI was done in November and he wanted to let three months pass between MRI's. We would look at it again in February.

We had all decided not to do whole brain radiation, because there was not a high enough chance for reduction in recurrence. But here we were, with new tumors, just months after surgery. We will never know if that decision was wrong. At that time, it felt wrong.

end of 2008

When the time came for the MRI, we were confident that everything would be fine. Marie had no other problems or side effects. We had been to one of the best hospitals in the world. Surly, everything was okay. When the results came back, we went to see the radiation oncologist. We were surprised, and we were not surprised with the results. There were things where the tumors had been. They could be new tumors, or something else. Something else? What does something else mean? The doctor didn't know and we didn't know.

Did the tumor morph into a new type of tumor? Was there scar tissue? Was something left behind from surgery? These were all questions that we had no answers to. All we knew was, what ever was there, it didn't belong there. The doctor said that he wanted to confer with our surgeon. He wanted another opinion. It was decided that he would get back with us, after they spoke.

We left the office with no knowledge of what Marie was facing. Or when we would know.

the end of 2008

Home from the surgery in Houston and everything seemed to be good. No new deficits or any other adverse condition. We needed to do two followup appointments. The first was to our surgeon in Omaha, who removed the stitches and checked the incision. The second was to our radiation oncologist, in Omaha, to discuss the possibility of whole brain radiation, to reduce the chances of recurrence. He was opposed to more radiation at this time, and it was the radiation oncologist that ordered the followup MRI for the end of the year. 

back to today 4/10/10

I know I have been kind of bouncing around lately. As I have been describing the past, about Marie's brain tumors, we are continuing to live and deal with the most current set of tumors. To clarify, the surgery in Houston, from the recent postings, occurred in 2008. The consultation appointments were in April 2008 and the surgery was May 2008.

Marie's current condition is more brain tumors. More chemotherapy is planned to begin this Wednesday. I will keep this blog updated on that situation while I continue to tell about the past, that brought us to this moment in time. 

back home

Our drive back home to Omaha was easy and enjoyable. I still couldn't believe it was all over. A few weeks after returning home we saw our surgeon and he removed Marie's stitches. Everything looked great, and we all agreed that going to Houston had been the right thing to do.

We also saw the radiation oncologist. He was opposed to doing any radiation. The odds of reducing recurrence wasn't high enough, to risk, any additional radiation. We should save radiation for the future. If we ever needed it.

That was it. Go live a good life.

Oh by the way, we need to do a followup MRI in six months.

go home

Less that a week after Marie was released from the hospital, we were back for her followup appointment. The nurse checked the incision to make sure everything was healing well. It all looked good, and she told us we could go home. We were to schedule an appointment with our surgeon in Omaha to remove the stitches. And with our radiation oncologist for possible followup radiation. That could reduce the possibility of recurrence. Still, things were looking up. This was the easiest procedure that Marie had.   

the hotel

Marie, her mother, and I all stayed together in a loft suite in a nearby hotel. We were within a couple of miles to the hospital.  Since Marie was doing so well, we didn't need to return to the hospital for a week, for a followup appointment. I spent the time sitting by the pool. It sounds crazy, but it was like a vacation. We even went out to dinner.

It wasn't a vacation. It was the release of stress. We went to Houston wondering how long we would be there. Weeks? Months? Would there be more deficits and therapies? When we found out that none of those problems were going to happen, we were so relieved, that we were happy.

short stay

The surgery was on a Wednesday, and by Thursday Marie was eating, talking, walking, and generally responding better than the medicals even expected. I stayed in the hospital with her overnight. I was going to be the watchdog. I was determined to not let things get out of hand. She would get the best care. On Friday morning the nurse announced that Marie could be released from the hospital.

Two days after brain surgery, Marie was going home. Or at least to the hotel. I just couldn't believe it. What about therapy. What about yet unseen side effects or problems. Quite frankly, there were no problems. Yes it was a tricky surgery that needed to be done by someone special, but this was unbelievable.

in the hospital

It had been almost eight years since the first surgery. The nightmare of that time was still alive. But this time things were different. A new surgeon. A new hospital. A new outcome. Marie was doing great. Each day I waited for something to happen. I was sure something would go wrong or be unexplained. That's how brain surgery works. Or does it? 

the surgeons face

After a few visits from the nurse, who updated us on the surgery, I spotted the surgeon heading our way. I knew the results before he reached us. As he walked towards us, he gave himself away. He has a huge smile on his face. Not someone who was concerned or troubled at all.  When he reach us, he shook my hand and patted me on the back. We went into a conference room to have our talk. Everything went well. No problems or unexpected events. She should recover quickly, with no new deficits or changes. It couldn't have been easier.

What a difference when you are lucky enough to get a surgeon that is so skilled and confident. Nothing wrong with our last surgeon, but this man was special. I give credit to our surgeon in Omaha, to recognize his limitations, and get Marie the help that she needed. We were very lucky.

When I saw Marie, I was blown away. She was awake and alert. There were no tubes coming out of her head, no large turban wrapping around and around. Part of her head was shaved and she had one small gauze like bandage covering the incision. I felt again like we didn't belong at MD Anderson, we were just lucky that they took Marie on as a patient.  

Her it was Wednesday afternoon, the surgery was done, Marie was alert, everything was great. Obviously we were lucky, lucky, lucky.

clarification on surgery

I just wanted to make sure the time line was correct, so I checked my notes. We arrived in Houston on Sunday. Marie had testing on Monday and Tuesday. Surgery was on Wednesday.