The 2:00 o'clock update came. The surgeon was almost done. They were scanning to see if they got all the tumors. That made me feel good. There didn't appear to be any bad news, and it didn't take as long as last time. Before the nurse came over to get me, I heard her talking to another family. They questioned the nurse as to why the information she was relaying was so vague.
Her answer was priceless. She said it only takes once to tell a family that everything is okay, and then come back later, to say things are not okay.
Monday, May 31, 2010
the next two hours
The waiting is comprised of two distinct parts. The nurses updates every two hours. And the things that happen between the updates. During the next two hours I was on the telephone quite a bit. I received a call from my wife's sisters husband. He wanted to let me know that they called my children and told them about their grandfather dieing. That really upset me. I wanted to tell my kids. I felt that they had enough on their minds with their mother in brain surgery. I wanted to tell them after I could give them a good update on their mom.
next update
The next update was at noon. The doctor was in the cavity and proceeding with the surgery. No other information was available. I took this as good news.
back to the surgery-bad news
While I was alone and waiting for Maries' surgery to continue, my cell phone rang. It was Maries younger brother. I thought he wanted to check on his sisters progress. Unfortunately he called to tell me that Maries' dad passed away. That was the worst possible news. He was a good man that lost his battle with cancer. I found it upsetting to realize that my wife could lose her battle at any time as well.
Maries dads had fought for a long time against his disease. At that time, Marie had been fighting for nine years. I kept thinking about all the times the medicals told me, after each treatment, that these tumors may never come back. But back they came, time, after time, after time.
I told Maries' brother that I was sorry for his loss, and that I would tell Marie at the appropriate time. I also told him that I would call my two children and let them know about their grandfather.
Maries dads had fought for a long time against his disease. At that time, Marie had been fighting for nine years. I kept thinking about all the times the medicals told me, after each treatment, that these tumors may never come back. But back they came, time, after time, after time.
I told Maries' brother that I was sorry for his loss, and that I would tell Marie at the appropriate time. I also told him that I would call my two children and let them know about their grandfather.
Sunday, May 30, 2010
back to today
This is just an update on the current chemotherapy. Marie is doing okay. She was felling nauseous last night, but it passed. Overall she has handled it alright, but at times had an awareness of just not felling well.
Sunday, May 23, 2010
the waiting room
I was alone in the waiting room. Even though it was crowded, I was alone. At 10:00am I got the first update from the nurse. It took a while for the preparation, so the surgery didn't start until 9:55am. It had been two hours, but the surgery didn't begin until five minutes ago.
Things just didn't feel like last year. I didn't know what it was, but things just didn't seen right. I know that seems easy to say, after the fact, but something was wrong.
Things just didn't feel like last year. I didn't know what it was, but things just didn't seen right. I know that seems easy to say, after the fact, but something was wrong.
before we left for houston
The difference between this surgery and the others, was that I was alone. It was just Marie and I that went to Houston. About a week before we left for Houston, we got a call about Maries' dad. He had been struggling with his own cancer issues. His started in the lungs, and over time, spread into the lymph nodes and to the groin. Chemotherapy had helped for quite a while, but he was now losing the battle. I just don't remember which relative called Marie and suggested that she come home to visit her dad, but I do remember Marie explaining that she was leaving in a few days, for her brain surgery.
I called one of her older brothers, to get a better handle on the situation, and he told me that, although dad was not doing well, this did not appear to be his time. And we should continue with the surgery plans. To this day, I regret that decision. I believe that we could have delayed the surgery for a few weeks. I believe there has been animosity, towards Marie, from her siblings, over her not returning home. I believe that Marie's cognizant issues do not allow her to fully grasp these type situations. I also believe that others do not understand the extent of Marie's cognizant issues either.
I did try to talk her into returning home for a few days, but she wanted to "get these things" out of her head. I do understand Maries' issues and could have tried harder to persuade her to go home. I wanted to believe that it wasn't my father in laws time.
I called one of her older brothers, to get a better handle on the situation, and he told me that, although dad was not doing well, this did not appear to be his time. And we should continue with the surgery plans. To this day, I regret that decision. I believe that we could have delayed the surgery for a few weeks. I believe there has been animosity, towards Marie, from her siblings, over her not returning home. I believe that Marie's cognizant issues do not allow her to fully grasp these type situations. I also believe that others do not understand the extent of Marie's cognizant issues either.
I did try to talk her into returning home for a few days, but she wanted to "get these things" out of her head. I do understand Maries' issues and could have tried harder to persuade her to go home. I wanted to believe that it wasn't my father in laws time.
back to the story
On Wednesday August 12, 2009, Marie was scheduled to check in for surgery at 6:00am. It's a large room of curtained rooms filled with people waiting their turn for surgery. After a while the anesthesiologist and his assistant came in for their pre-work. At 8:00am Marie was wheeled away. I went to the waiting room. Since we had been through this before, I was a veteran of knowing where to go and what to do.
Thursday, May 20, 2010
today today
Today was Maries' last day for chemotherapy during this session. So far, so good. No problems.
Wednesday, May 19, 2010
back and forth
Going back and forth between the story, that leads to now and the current situation, can be confusing. Please leave a comment if you have any questions.
The story is at a place of, August 2009, which was Maries' second surgery at MD Anderson.
The current situation is 9 months later when Marie is undergoing chemotherapy. The insurance company first considered it experimental, but have no reversed their decision.
The story is at a place of, August 2009, which was Maries' second surgery at MD Anderson.
The current situation is 9 months later when Marie is undergoing chemotherapy. The insurance company first considered it experimental, but have no reversed their decision.
today
Marie had her second chemo treatment this week. She did well with no appearance of any side effects. Tomorrow will be her final treatment, and end the second phase. At this point she will begin the final phase on June 15, 2010.
Tuesday, May 18, 2010
still today
Marie got her chemo treatment today. The plan was to have chemo three days in a row, wait about four week and then three more days in a row. The weeks in between chemo treatments would be blood tests, to monitor the cell count. After three sessions of these three day treatments, another MRI would be scheduled to see if the chemo is working.
Marie was supposed to start her second round last week. It was delayed while the medicals took a second look at the brain scans and report, to reassess whether this treatment was truly what should be done, in light of the insurance company's denial.
The doctors did reaffirm that this is the right treatment to proceed with. Yesterday, we scheduled the appointment for Marie's chemo treatment, that would start today. We didn't hear from the insurance company, that they reversed their decision, until this morning. We had decided to go ahead with the treatments, even without the insurance company's support. It was good news, though, to find out that all sides agreed.
Marie was supposed to start her second round last week. It was delayed while the medicals took a second look at the brain scans and report, to reassess whether this treatment was truly what should be done, in light of the insurance company's denial.
The doctors did reaffirm that this is the right treatment to proceed with. Yesterday, we scheduled the appointment for Marie's chemo treatment, that would start today. We didn't hear from the insurance company, that they reversed their decision, until this morning. We had decided to go ahead with the treatments, even without the insurance company's support. It was good news, though, to find out that all sides agreed.
back to today
After approximately three weeks, the insurance company has reversed their decision, and have now approved the chemotherapy treatments for Marie.
Saturday, May 15, 2010
finally a day where we talk to people
About 10:30am the next morning, we go to the Brain and Spine Center, and meet with the social worker. She appears to be very young. After talking to her a while she seems to know her stuff so we fill out forms for Cancer Care, Angel Flight.
After that meeting Marie suggest that I get my hair cut in the hotel lobby. We meet the salon lady and she says she will cut my hair. She proceeds to give me the best hair cut that I've ever had using a comb/razor contraption, but first she washed my hair and rubbed out a knot that was on my neck. She told me that I have a lot of stress. While she cut my hair she told us about some of the history of M D Anderson. Not about the building but about the people. She has worked there for 42 years since, as she put it, that M D Anderson was just a little place in the back country. She told us about Clark, one time president of M D Anderson, and how he helped the place grow to what is is today. She told us about patients, Sam Walton and how he could be difficult, and about Sam Shepard(the astronaut). She talked about a time when it was hard to get people to work there because they thought cancer was catching. She filled us with stories of Egyptian royalty with many wives and maids. She should write a book. I'm sure it would become a movie.
At 1:00pm we meet with the surgeon and his entourage. Besides his normal staff he has two medical students with him. The surgeon tells us that the surgery will take about 6 hours. He is going through the original surgical cavity which is quite large, and makes it easy to get to all the spots. He tells us that instead of 4 lesions it looks like there may be 5, but two are connected. He explains that one spot is from radiation and some of the other spots are probably neurocytoma and some may not be. His plan is to send some to the pathologist so we know what we are dealing with. We ask him if we could take a picture with him and he seemed overjoyed.
Later that day Marie picks out a scarf/hat from the hat cart. The hat cart if a small push cart that is manned by volunteers and comes to the Rotory House(hotel) lobby on Monday evenings at 7:00pm. The hats are free to patients. Another nice service. Sometimes it's the little things that make a big difference.
That night we watched a CD in the TV room. It was extremely funny. It is great to see patients laugh for a while. Good thinking Rotory House.
After that meeting Marie suggest that I get my hair cut in the hotel lobby. We meet the salon lady and she says she will cut my hair. She proceeds to give me the best hair cut that I've ever had using a comb/razor contraption, but first she washed my hair and rubbed out a knot that was on my neck. She told me that I have a lot of stress. While she cut my hair she told us about some of the history of M D Anderson. Not about the building but about the people. She has worked there for 42 years since, as she put it, that M D Anderson was just a little place in the back country. She told us about Clark, one time president of M D Anderson, and how he helped the place grow to what is is today. She told us about patients, Sam Walton and how he could be difficult, and about Sam Shepard(the astronaut). She talked about a time when it was hard to get people to work there because they thought cancer was catching. She filled us with stories of Egyptian royalty with many wives and maids. She should write a book. I'm sure it would become a movie.
At 1:00pm we meet with the surgeon and his entourage. Besides his normal staff he has two medical students with him. The surgeon tells us that the surgery will take about 6 hours. He is going through the original surgical cavity which is quite large, and makes it easy to get to all the spots. He tells us that instead of 4 lesions it looks like there may be 5, but two are connected. He explains that one spot is from radiation and some of the other spots are probably neurocytoma and some may not be. His plan is to send some to the pathologist so we know what we are dealing with. We ask him if we could take a picture with him and he seemed overjoyed.
Later that day Marie picks out a scarf/hat from the hat cart. The hat cart if a small push cart that is manned by volunteers and comes to the Rotory House(hotel) lobby on Monday evenings at 7:00pm. The hats are free to patients. Another nice service. Sometimes it's the little things that make a big difference.
That night we watched a CD in the TV room. It was extremely funny. It is great to see patients laugh for a while. Good thinking Rotory House.
back to Houston
Sunday August 9, 2009 we fly to Houston. The decision we made was that, there would be no need to have a car. We arranged for transportation to the hotel and arrived at 8:30 in the morning. Surprisingly our room was ready. We spent a lazy, boring day with nothing to do but think about what was coming.
social worker #1
The last thing to accomplish in July 2009 was to make contact with a social worker at the hospital in Houston. This brain tumor nightmare, had long past, become a financial nightmare. The thought of another surgery in Houston and then returning again and again for chemotherapy was overwhelming. Would Marie be able to return to work, would I have to take time off unpaid? The travel and housing expenses? How could anyone do it?
Others must have gone thorough this before. If anyone could help, I believed it would be a social worker. My understanding was that, they were there to find helpful programs. Unless your rich, you can not do this on your own. We were lucky, that would already received some help. Earlier in the year, people that I work with, got together an organized a fund raiser. Family and friends were able to raise enough money to get Marie through this next surgery. It was a tremendous effort and eliminated the financial stress that would have come for this trip. I don't think I will ever be able to thank them enough.
The reason to contact the social worker was for all the things that would come after the surgery. I wouldn't be able to expect more fund raisers in the future. The people that gave were hard workers. Many worked more than one job to make ends meet. It was a bittersweet experience to realize that people you hardly know would give so generously, while there were family members that didn't even acknowledge the event.
I made contact with the social worker. She sent us, forms that we could fill out for different programs. We agreed to meet, when we returned in August for the surgery.
Others must have gone thorough this before. If anyone could help, I believed it would be a social worker. My understanding was that, they were there to find helpful programs. Unless your rich, you can not do this on your own. We were lucky, that would already received some help. Earlier in the year, people that I work with, got together an organized a fund raiser. Family and friends were able to raise enough money to get Marie through this next surgery. It was a tremendous effort and eliminated the financial stress that would have come for this trip. I don't think I will ever be able to thank them enough.
The reason to contact the social worker was for all the things that would come after the surgery. I wouldn't be able to expect more fund raisers in the future. The people that gave were hard workers. Many worked more than one job to make ends meet. It was a bittersweet experience to realize that people you hardly know would give so generously, while there were family members that didn't even acknowledge the event.
I made contact with the social worker. She sent us, forms that we could fill out for different programs. We agreed to meet, when we returned in August for the surgery.
Friday, May 14, 2010
back to today
The big delay in writing has been the current situation regarding the insurance company. They denied the chemo treatments. I have been frantically challenging the medicals to be sure that this treatment is the right way to go. I have no problem appealing the insurance company's decision, but I want the medicals to relook at the scans and reports to be sure that this is the right thing to do.
MD Anderson will be reviewing the case on their tumor board, this week, to give their opinion. Who knows, maybe they will ask us to go back to Houston again. I'm glad they are there, and I'm glad they are involved again.
These last couple of weeks have been exhausting. Mentally and physically. I will try to continue the story where I left off before this latest development.
MD Anderson will be reviewing the case on their tumor board, this week, to give their opinion. Who knows, maybe they will ask us to go back to Houston again. I'm glad they are there, and I'm glad they are involved again.
These last couple of weeks have been exhausting. Mentally and physically. I will try to continue the story where I left off before this latest development.
Wednesday, May 5, 2010
chemo?
After the neuro ophthalmologist, we met with the oncologist. He told us that since we had be to Houston the year earlier, there were new medications that could be tried. We listened to the plan. A two prong chemotherapy attack. First temozolomide, which would be taken orally, and travel through the blood stream. Second, would be topotecan. This would be administered by injecting the chemical into a reservoir stored under the scalp. The medication would travel down a tube, which was inserted through the skull, and wash over the tumors topically.
Marie would have surgery to remove as much tumor as possible and the reservoir would be implanted as part of that operation .
Marie would have surgery to remove as much tumor as possible and the reservoir would be implanted as part of that operation .
Houston July 2009
In mid July we were back in Houston. The first appointment was with a neuro ophthalmologist. A determination had to be made if the tumor(s) were affecting Marie's eye. The twitching had stopped by the time of the appointment, but the eyelid was still dropping. Ar least there was some physical evidence that something had happened. Other than the dropping, the doctor couldn't find anything else wrong. And she felt the tumor(s) should not have been causing any eye trouble.
This turned out to be another unexplained happening. It's just my opinion, but I was begging to believe that this, supposed benign tumor, was much more aggressive and troublesome than anyone knew. This condition was so rare, it' was just not understood.
This turned out to be another unexplained happening. It's just my opinion, but I was begging to believe that this, supposed benign tumor, was much more aggressive and troublesome than anyone knew. This condition was so rare, it' was just not understood.
Sunday, May 2, 2010
denied
On Wednesday the insurance company informed me that Marie's current chemotherapy treatments would be denied. Even though the oncologist wrote a letter saying this is medically necessary, the insurance company has denied the treatments. I asked to talk to the medical director at the insurance company, but i was denied access. I was told that I wasn't on his level.. Marie's doctor could call and request a peer to peer discussion, but I can not.
We are supposed to follow the appeal process. The insurance company is sending a letter of denial that should describe the appeal process. Wow, I can't wait.
The best part for the phone call on Wednesday from the case manager at the insurance company. She left me a phone message, to call her, and to have a great day. That's right. She wanted me to have a great day, even though she knew she was going to tell me, that they were not going to pay for the treatments, that the oncologist prescribed.
I have been on the phone, constantly, with doctors, nurses, and financial managers. The financial managers are the ones that work with the insurance companies.
We are supposed to follow the appeal process. The insurance company is sending a letter of denial that should describe the appeal process. Wow, I can't wait.
The best part for the phone call on Wednesday from the case manager at the insurance company. She left me a phone message, to call her, and to have a great day. That's right. She wanted me to have a great day, even though she knew she was going to tell me, that they were not going to pay for the treatments, that the oncologist prescribed.
I have been on the phone, constantly, with doctors, nurses, and financial managers. The financial managers are the ones that work with the insurance companies.
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