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What Happens to a Person Who Is Dying From Glioblastoma Multiform
If you have recently found out that you, a family member or a friend has been diagnosed with glioblastoma mediforme (gbm), you are probably wondering, “What will happen?” Of course, this is just one of many thoughts that will race through your mind. How do I know this? Because I was with my brother when he was diagnosed.
He did not survive, but he was able to receive treatment that allowed him 6 years with his family before succumbing to gbm.
We discovered the tumor after he had a major seizure in 1994. He was home alone with his three children – 6, 2½ and 1 – when it happened. His 6-year-old ran to a neighbor and told her that something was wrong with her father. Tests at the hospital revealed he had a tumor – that’s all we understood. The doctor said we had to put a “shutter” in my brother’s skull so they could cut out the tumor – but often repeat the procedure. Why would they repeat the procedure? Because excising a tumor means taking out a small part of the tumor at a time; then if it comes back the doctors would invade my brother’s brain again and take a little more of the tumor.
Not satisfied with that!
Doing what I do best, I researched everything I could find – I reached out to medical contacts to find the names of the best doctors near us. My brother and I traveled to NYC to consult with a neurologist on Park Avenue. He was, apparently, quite famous for his understanding of brain tumors. At the end of the visit he advised my brother to get his affairs in order as he only had a matter of months to live. He told us that the tumor was cancerous and surgery would not solve the problem.
A friend of my mother had a cousin who was a neurologist in Boston. We sent my brother’s MRIs, X-rays and test results to him. He immediately called and said that the neurosurgeon in Boston could help my brother. We made an appointment and met the doctor. What a difference!
This doctor explained everything so clearly. He offered hope, but no promise of a perfect life.
So what happened next?
Kim, my brother, was scheduled for surgery; but first he had to go through a series of MRIs (fast MRIs) that provided information for the doctor to create a 3D image of my brother’s brain so he could prepare for surgery. During the operation, Kim had to stay awake so the doctor could ask questions. Kim had to identify pictures and words and answer questions during surgery so the doctor could determine if he was resecting (removing) tissue too close to functional areas of his brain.
He ended up shaving his entire head because the small amount of hair left just looked out of place. The rest of his head had scars that his 2½-year-old daughter described as looking like a baseball. (I’m sure she was referring to the stitching on the ball—Kim’s skull had similar stitching.) The risks of this surgery included:
- Infection: The patient could get an infection in the wound or a deeper infection from exposure in the hospital
- Bleeding: This can be superficial bruising or a deeper collection of blood
- Loss of smell or cerebrospinal fluid leaking through the nose when the doctor uses a frontal approach to remove the tumor
- Damage to the cranial nerves resulting in facial numbness, loss of vision, or double vision
- The need for a blood transfusion during or after the procedure
- Weakness, numbness, slurred speech or paralysis (stroke-like symptoms)
- Epilepsy, which requires medication (this happened to my brother)
- Surgery cannot cure this condition and further treatment may be necessary
- Coma or death
This was just the beginning – but Kim could have that operation with his child for another six years. In the meantime, he received aggressive radiation and chemotherapy twice a week through a combination of IVs and pills. He was incredibly sick from the treatment (vomiting, nausea, exhaustion), but he continued to work. It was not easy work either; he was a floor sander, lifting 300-pound machines up several flights of stairs. It was during one of these climbs about three years after the resection that he got an incredible headache – the worst he had ever experienced.
The local emergency department revealed that he had suffered a brain aneurysm – this is when a weak area in an artery that supplies blood to the brain bulges. However, if one of these aneurysms ruptures, it causes a hemorrhage that leads to further brain damage or even death. The doctor explained that the only reason my brother didn’t die from this hemorrhage was because the tumor resection had left a cavity or hole in his brain that allowed the blood to pool. He further explained that a possible reason was that the artery was weakened from the radiation.
It took him several months to recover from this. But when he recovered, he returned to work and raised his three children alone. This is when things really started going for him. The doctors had him on high doses of steroids to reduce swelling and on Depakote to prevent epileptic seizures.
These were some of the side effects he endured:
- Increased appetite and the potential for weight gain
- Personality changes (ranging from moodiness to psychosis)
- Muscle loss (especially in the thighs, which bear the patient’s weight when standing, sitting and walking)
- Bloated appearance (distended abdomen, cushingoid swelling of the face, and sometimes a lump in the neck)
- Pooling of fluid in the extremities
- Potential for steroid-induced diabetes
Unfortunately my brother that developing diabetes and getting insulin shots and blood sugar tests several times a day – that was one of my jobs. He had been an extremely athletic and active person (for example, he would get up at 4:00 a.m. to pull lobster pots (200 pots) as a hobby before work; then he would scour and sand and refinish floors all day; after work he would drive either his touring or mountain bike for 20 to 30 miles; and finally he would clean the house and take care of his three children). He really struggled to become sedentary and gained almost 100 kilos.
He was functioning well – but he was slower, less coordinated, and his speech was slurred. He had MRIs every three months for two years and then every six months for the next four years. In the fall of 2000, just a few months after a regularly scheduled MRI that came back clear, Kim’s speech got worse and he started getting headaches again. We went to the hospital and what they told us broke us.
Not only was the tumor back, but it was the worst kind of tumor – the fastest growing and inoperable. The tumor had suddenly grown like fingers spread through his brain.
Kim quickly lost his ability to walk, talk, feed himself, or use the bathroom. He lost all dignity at this point. He had to be fed, wear diapers and lay in bed. He survived for about six months. He didn’t want to give up his independence and he would try to run but fall on the floor. He was 6’2″ and 160 pounds before the cancer; after all the medicine, treatment and sedentary lifestyle he was still 6’2″, but he was 260 pounds. Trying to pick him up was difficult – impossible in fact. My parents were in their 70s and they would try to get him up – it took the three of us to get him back to bed many nights. It was exhausting, but absolutely heartbreaking.
Kim stayed in my house until he died. I will never forget the volunteers who came to my house just to sit with my brother – read, talk or tell stories – anything to give the family a little break from the constant care. Their willingness to serve kept us from feeling alone and gave us opportunities to go to the store without worries.
Hospice eventually came and checked on him. He had difficulty communicating. His breathing was so difficult, he was rarely clear, and he was in pain. The Hospice workers gave him morphine to ease the pain and he stopped fighting to live just one day later, March 16, 2001. He was 49 years old.
I hope this information helps even one person understand what families with a gbm diagnosis can experience.
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