Surgery For Brain Tumor
ERIKA L.
29 years old recently married female. She was on a cruise and had suffered headache. It will have never been close to her mind that it is caused by malignant brain cancer GBM, the most aggressive, unless it was seen in the MRI in 2005. After the shock with her smile and confidence, she took the challenge having facde that she will do great. She underwent brain surgery and the tumor was aggressively debulked to ensure the best recovery possible. The pathology report came with what was suspected: it is GBM. Her husband continued to search about GBM and fill his mind with knowledge about the expectation of this type of cancer but it filled him with sadness. Erika, in the other hand, continued to fight the cancer by her great positive attitude., She went back to school to study psychology which she loved. She was able to overcome the social look down by others in the school and continued to live and prove her normal activity to many that could not believe. She received chemotherapy for years and had radiation. The tumor did not grow back for a long while and she was one of the longest survivals in this type of chemotherapy. Until there was a surprise in 2009 with tumor recurrence. She had another brain surgery that demonstrated the tumo r recur: was back and was spreading. She did great after the surgery and went to another vacation trip. While recovering from the brain tumor, another tumor, lymphoma, appeared in her pelvis and abdomen. Chemotherapy and radiation was about to be administered but she passed away at the age of 34 years old. She always dreamed to live longer than her Dad lived and accomplish more. She wished that her life was not cut short and she can adopt children to spread her love. She supported her mother while she was dying from breast cancer. What a great angel: she lived to the last minute with her gifting putting a shame in us with gifts that we are not using or life that we are not praising.
Erika L. had suffered from headaches for many years. She had always thought they were sinus headaches, and she treated them with hot showers, inhaling steam and over-the-counter pain relievers. On her 29th birthday in 2004, while enjoying an Alaska cruise with her husband, she developed a severe headache, which refused all her previous treatment options. It continued for days. On the second day she visited the shipboard physician, who told her she had a sinus infection. The trip home on Sunday on the plane was only bearable with the use of Tylenol 3 to control the pain. By Monday she could not lift her head from the pillow. Her husband called the nurse hotline sponsored by their health insurance. After hearing Erika could not lift her head and found the sound of her husband's nervous pacing incredibly painful, the nurse told her husband to take Erika immediately to the emergency room.
Once at the suburban hospital emergency room, the on-call physician there ordered a CT scan of the brain. A tumor was evident and Erika was told she could either remain at the suburban hospital or be transferred to the main hospital some 40 miles away. She elected to remain close to home. "I really don't remember a lot of what happened over the next day or so," Erika says. "But I do remember on Tuesday morning Dr. Ghaly woke me up, holding up my brain scan and telling me I needed surgery on Thursday. He said that without the surgery I would have one to two months of life left, and that time would not be pleasant."
Erika thought about getting a second opinion, and Dr. Ghaly said that was possible if she felt uncomfortable about his diagnosis. She decided to go with the surgery and notified friends and family about her condition. "I was fortunate to be surrounded by family during and after the surgery," she recalls. "I knew cancer runs in my family. My father had died of cancer at a very young age. And my mother was in the midst of being treated for breast cancer when I was diagnosed. I had also lost a grandparent to cancer."
Possible side effects of the surgery included paralysis and speech problems, caused by the location of the tumor in the brain. Dr. Ghaly removed a tumor that was larger than an orange during a 10-hour surgery. It was tested and was found to be a stage IV glioblastoma in the right central lobe of the brain.
"I can't remember much about the next day or so, but I do know that Dr. Ghaly was there when I woke up," Erika says. "On Saturday, Dr. Ghaly asked if the nurses had washed my hair. He said I would start to feel better once my hair was washed. On Sunday morning he came in and washed it himself! I was home on Tuesday, less than a week after the surgery!"
Erika would have six weeks of radiation, every day, Monday through Friday, and 24 cycles of chemotherapy. She was placed on an antisiezure medication, as patients often have seizures after brain surgery. "Because I was on the antiseizure meds, I had to have blood tests weekly and the home health people were in charge of that," Erika says. "When they failed to catch a low level of the medication, Dr. Ghaly was right on it and called them immediately. He kept after them. Then he gave my husband and I his personal cell phone number, so we could call with any questions. When I was scared, my husband would call Dr. Ghaly and let him talk with me. Dr. Ghaly would soothe the fears and make me feel better. One time I had an allergic reaction to a medication and was taken to the ER. The ER doctor had already spoken with Dr. Ghaly by the time I arrived there."
Erika is still on chemotherapy today, four years later. "My neurological oncologist said I could stop it after the 24 cycles, but by my own choice I have decided to remain on it once a month for five days because of my strong family history of cancer," Erika said. "I take it orally and have very little side effects from it, usually only a bit of being fatigued while I'm on the drug."
Getting started with radiation and chemotherapy was a challenge for Erika. "The suburban hospital I was using was having trouble with the radiation equipment, so I could not start treatment," she recalls. "As soon as Dr. Ghaly found that out he made arrangements for me to go elsewhere. I had mapping done on Friday to locate the area to focus the radiation, and started treatments on Monday. He was on top of the treatment options from the start and made sure things got done. It really helps to have a doctor who pays attention to your treatment, even if it involves other physicians."
Radiation was inconvenient, because it required so many visits, but Erika says the side effects were no so bad. "As the radiation treatments went on I felt increasing fatigue, and lost my hair in that area," she says. "Some of that hair has come back, but not all of it. That hair loss and recovery seems to be dictated by genetics. Some people grow it back; others have permanent hair loss at the site of radiation. Within a short time of ending the radiation I felt better and my energy levels returned to normal."
The chemotherapy also had minimal side effects for Erika. "I still get tired during the five days a month I take the drugs, but that goes away as soon as I discontinue the drug," Erika said. "I take an antinausea drug, which works 95-97 percent of the time. And I take a drug for constipation, because that is another side effect. All in all, the side effects are pretty manageable. Chemo for me was nothing lie the chemo my mother took for her breast cancer."
Recovery went quickly for Erika. After the surgery, Dr. Ghaly told her she probably would not drive for 3-6 months. But after six weeks, and with no seizures, Erika asked permission to drive, and Dr. Ghaly agreed. "I started driving slowly, and for short trips," she laughs. "And my husband always wanted to know where I was going, and when I'd get back. I keep a cell phone always close by, even today. I have some short-term memory deficits, and he was worried I'd forget where I was, or how to get back. So he had a GPS system put in my car. Today, I'm pretty much back to normal. I still get fatigued, more so than before the surgery, but it's nothing debilitating."
Erika does have some lingering short-term memory problems, also a result of the brain tumor. "I just leave myself lots of notes, posted everywhere," she says.
Erika has some useful tips for anyone facing a diagnosis requiring brain surgery. "Be sure to research all your options," she says. "Keep a record of everyone's diagnosis/opinion, and continue that notebook during your treatment. Sometimes I had appointments with a different doctor every day. Because I kept good records and had copies of my tests, the doctors never had to wait to talk with the other doctors involved in my care. Doctors just don't communicate that quickly, and having my records made that easier."
Erika says to save everything: all records, notes, and other papers. And ask questions. "Those who don't ask, aren't told," she says. "I wanted to know everything about my treatment."
Be sure to find the right physician for you, she says. "I was so fortunate to find Dr. Ghaly," she said. "He is so dedicated to his patients. He follows their care, not just during the surgery, but afterward as well. He had to cancel an appointment with me after the surgery because of an emergency. I'm certainly OK with that, because I was an emergency that first night we met. But he had me meet him in ICU where he was caring for another patient. He checked my wound and found it was doing well. But what I observed was as soon as he walks into the room, all the nurses jump. They followed him around, looking to help him in any way they could. Clearly they respected him!"
Be ready to face depression. "I was very depressed afterwards," Erika said. "I ordered a magazine subscription shortly after my surgery, and thought I'd never be around to see the final copy a year later. Now here I am, four years later, and still renewing that subscription!"
Attending a brain tumor support group's meetings was also helpful, Erika says. "My husband actually forced me to attend my first meeting," she says. "I have found the group very helpful. I felt very isolated and alone, and it helps to know I'm not the only one out there to have had this surgery. It really helped to know I was not alone. I still attend meetings and still get information out of them. Sometimes we'll compare notes of what we did to get through chemo or radiation."
Erika saw Dr. Ghaly twice a week for a time, then once a week, then every other week, then monthly, then every three months. "When Dr. Ghaly suggested we move to every six months it was bittersweet," she recalls. "It meant I was getting better, but it meant I would see him less, and Dr. Ghaly had become a member of my family, He used to call my mother to see how her cancer treatment was going. He still asks about my cousins and aunts and uncles. He even attended a special birthday party for my 30th birthday. It was a special party, because my 29th birthday had been so bad!"
Erika returned to the university, pursuing a degree to become an interpreter for the deaf. She says she only missed one semester of classes.
But the tumor did return, and in 2008 Erika died. Her husband, Dan takes up her story. He says he and his wife cherished every day they had together, and that Erika lived every day to the fullest. She accomplished many things during the time after her surgery.
29 years old recently married female. She was on a cruise and had suffered headache. It will have never been close to her mind that it is caused by malignant brain cancer GBM, the most aggressive, unless it was seen in the MRI in 2005. After the shock with her smile and confidence, she took the challenge having facde that she will do great. She underwent brain surgery and the tumor was aggressively debulked to ensure the best recovery possible. The pathology report came with what was suspected: it is GBM. Her husband continued to search about GBM and fill his mind with knowledge about the expectation of this type of cancer but it filled him with sadness. Erika, in the other hand, continued to fight the cancer by her great positive attitude., She went back to school to study psychology which she loved. She was able to overcome the social look down by others in the school and continued to live and prove her normal activity to many that could not believe. She received chemotherapy for years and had radiation. The tumor did not grow back for a long while and she was one of the longest survivals in this type of chemotherapy. Until there was a surprise in 2009 with tumor recurrence. She had another brain surgery that demonstrated the tumo r recur: was back and was spreading. She did great after the surgery and went to another vacation trip. While recovering from the brain tumor, another tumor, lymphoma, appeared in her pelvis and abdomen. Chemotherapy and radiation was about to be administered but she passed away at the age of 34 years old. She always dreamed to live longer than her Dad lived and accomplish more. She wished that her life was not cut short and she can adopt children to spread her love. She supported her mother while she was dying from breast cancer. What a great angel: she lived to the last minute with her gifting putting a shame in us with gifts that we are not using or life that we are not praising.
Erika L. had suffered from headaches for many years. She had always thought they were sinus headaches, and she treated them with hot showers, inhaling steam and over-the-counter pain relievers. On her 29th birthday in 2004, while enjoying an Alaska cruise with her husband, she developed a severe headache, which refused all her previous treatment options. It continued for days. On the second day she visited the shipboard physician, who told her she had a sinus infection. The trip home on Sunday on the plane was only bearable with the use of Tylenol 3 to control the pain. By Monday she could not lift her head from the pillow. Her husband called the nurse hotline sponsored by their health insurance. After hearing Erika could not lift her head and found the sound of her husband's nervous pacing incredibly painful, the nurse told her husband to take Erika immediately to the emergency room.
Once at the suburban hospital emergency room, the on-call physician there ordered a CT scan of the brain. A tumor was evident and Erika was told she could either remain at the suburban hospital or be transferred to the main hospital some 40 miles away. She elected to remain close to home. "I really don't remember a lot of what happened over the next day or so," Erika says. "But I do remember on Tuesday morning Dr. Ghaly woke me up, holding up my brain scan and telling me I needed surgery on Thursday. He said that without the surgery I would have one to two months of life left, and that time would not be pleasant."
Erika thought about getting a second opinion, and Dr. Ghaly said that was possible if she felt uncomfortable about his diagnosis. She decided to go with the surgery and notified friends and family about her condition. "I was fortunate to be surrounded by family during and after the surgery," she recalls. "I knew cancer runs in my family. My father had died of cancer at a very young age. And my mother was in the midst of being treated for breast cancer when I was diagnosed. I had also lost a grandparent to cancer."
Possible side effects of the surgery included paralysis and speech problems, caused by the location of the tumor in the brain. Dr. Ghaly removed a tumor that was larger than an orange during a 10-hour surgery. It was tested and was found to be a stage IV glioblastoma in the right central lobe of the brain.
"I can't remember much about the next day or so, but I do know that Dr. Ghaly was there when I woke up," Erika says. "On Saturday, Dr. Ghaly asked if the nurses had washed my hair. He said I would start to feel better once my hair was washed. On Sunday morning he came in and washed it himself! I was home on Tuesday, less than a week after the surgery!"
Erika would have six weeks of radiation, every day, Monday through Friday, and 24 cycles of chemotherapy. She was placed on an antisiezure medication, as patients often have seizures after brain surgery. "Because I was on the antiseizure meds, I had to have blood tests weekly and the home health people were in charge of that," Erika says. "When they failed to catch a low level of the medication, Dr. Ghaly was right on it and called them immediately. He kept after them. Then he gave my husband and I his personal cell phone number, so we could call with any questions. When I was scared, my husband would call Dr. Ghaly and let him talk with me. Dr. Ghaly would soothe the fears and make me feel better. One time I had an allergic reaction to a medication and was taken to the ER. The ER doctor had already spoken with Dr. Ghaly by the time I arrived there."
Erika is still on chemotherapy today, four years later. "My neurological oncologist said I could stop it after the 24 cycles, but by my own choice I have decided to remain on it once a month for five days because of my strong family history of cancer," Erika said. "I take it orally and have very little side effects from it, usually only a bit of being fatigued while I'm on the drug."
Getting started with radiation and chemotherapy was a challenge for Erika. "The suburban hospital I was using was having trouble with the radiation equipment, so I could not start treatment," she recalls. "As soon as Dr. Ghaly found that out he made arrangements for me to go elsewhere. I had mapping done on Friday to locate the area to focus the radiation, and started treatments on Monday. He was on top of the treatment options from the start and made sure things got done. It really helps to have a doctor who pays attention to your treatment, even if it involves other physicians."
Radiation was inconvenient, because it required so many visits, but Erika says the side effects were no so bad. "As the radiation treatments went on I felt increasing fatigue, and lost my hair in that area," she says. "Some of that hair has come back, but not all of it. That hair loss and recovery seems to be dictated by genetics. Some people grow it back; others have permanent hair loss at the site of radiation. Within a short time of ending the radiation I felt better and my energy levels returned to normal."
The chemotherapy also had minimal side effects for Erika. "I still get tired during the five days a month I take the drugs, but that goes away as soon as I discontinue the drug," Erika said. "I take an antinausea drug, which works 95-97 percent of the time. And I take a drug for constipation, because that is another side effect. All in all, the side effects are pretty manageable. Chemo for me was nothing lie the chemo my mother took for her breast cancer."
Recovery went quickly for Erika. After the surgery, Dr. Ghaly told her she probably would not drive for 3-6 months. But after six weeks, and with no seizures, Erika asked permission to drive, and Dr. Ghaly agreed. "I started driving slowly, and for short trips," she laughs. "And my husband always wanted to know where I was going, and when I'd get back. I keep a cell phone always close by, even today. I have some short-term memory deficits, and he was worried I'd forget where I was, or how to get back. So he had a GPS system put in my car. Today, I'm pretty much back to normal. I still get fatigued, more so than before the surgery, but it's nothing debilitating."
Erika does have some lingering short-term memory problems, also a result of the brain tumor. "I just leave myself lots of notes, posted everywhere," she says.
Erika has some useful tips for anyone facing a diagnosis requiring brain surgery. "Be sure to research all your options," she says. "Keep a record of everyone's diagnosis/opinion, and continue that notebook during your treatment. Sometimes I had appointments with a different doctor every day. Because I kept good records and had copies of my tests, the doctors never had to wait to talk with the other doctors involved in my care. Doctors just don't communicate that quickly, and having my records made that easier."
Erika says to save everything: all records, notes, and other papers. And ask questions. "Those who don't ask, aren't told," she says. "I wanted to know everything about my treatment."
Be sure to find the right physician for you, she says. "I was so fortunate to find Dr. Ghaly," she said. "He is so dedicated to his patients. He follows their care, not just during the surgery, but afterward as well. He had to cancel an appointment with me after the surgery because of an emergency. I'm certainly OK with that, because I was an emergency that first night we met. But he had me meet him in ICU where he was caring for another patient. He checked my wound and found it was doing well. But what I observed was as soon as he walks into the room, all the nurses jump. They followed him around, looking to help him in any way they could. Clearly they respected him!"
Be ready to face depression. "I was very depressed afterwards," Erika said. "I ordered a magazine subscription shortly after my surgery, and thought I'd never be around to see the final copy a year later. Now here I am, four years later, and still renewing that subscription!"
Attending a brain tumor support group's meetings was also helpful, Erika says. "My husband actually forced me to attend my first meeting," she says. "I have found the group very helpful. I felt very isolated and alone, and it helps to know I'm not the only one out there to have had this surgery. It really helped to know I was not alone. I still attend meetings and still get information out of them. Sometimes we'll compare notes of what we did to get through chemo or radiation."
Erika saw Dr. Ghaly twice a week for a time, then once a week, then every other week, then monthly, then every three months. "When Dr. Ghaly suggested we move to every six months it was bittersweet," she recalls. "It meant I was getting better, but it meant I would see him less, and Dr. Ghaly had become a member of my family, He used to call my mother to see how her cancer treatment was going. He still asks about my cousins and aunts and uncles. He even attended a special birthday party for my 30th birthday. It was a special party, because my 29th birthday had been so bad!"
Erika returned to the university, pursuing a degree to become an interpreter for the deaf. She says she only missed one semester of classes.
But the tumor did return, and in 2008 Erika died. Her husband, Dan takes up her story. He says he and his wife cherished every day they had together, and that Erika lived every day to the fullest. She accomplished many things during the time after her surgery.