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What Happens to a Person Who Is Dying From Glioblastoma Multiform
If you recently learned that you, a family member, or a friend has been diagnosed with glioblastoma mediforma (gbm), you are most likely asking yourself, “What will happen?” Of course, this is just one of many thoughts that will run 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 suffered a grand mal 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 them something was wrong with her father. Testing at the hospital revealed he had a tumor – that’s what we understood. The doctor said we needed to put a “hole” in my brother’s skull so they could cut out the tumor – but could repeat the procedure often. Why would they repeat the procedure? Because cutting out a tumor means taking out a small part of the tumor at a time; then when it comes back, the doctors would invade my brother’s brain again and take some 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, very 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 had only a few months to live. He told us that the tumor was cancerous and surgery would not solve the problem.
A friend of my mother’s had a nephew who was a neurologist in Boston. We sent him my brother’s MRIs, x-rays and test results. 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 surgery, Kim had to stay awake so the doctor could ask questions. Kim had to identify pictures and words and answer questions during the 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 stitch on the ball – Kim’s skull had a similar stitch.) The risks of this operation included:
- Infection: The patient could get an infection in the wound or a deeper infection from exposure in the hospital
- Bleeding: This could be a superficial bruise or a deeper blood pool
- Loss of smell or cerebrospinal fluid leaking through the nose if 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, speech disturbance or paralysis (stroke-like symptoms)
- Epilepsy that may require medication (this happened to my brother)
- Surgery may not cure this condition and additional treatment may be needed
- Coma or death
This was just the beginning – but that surgery allowed Kim another six years with his children. In the meantime, he underwent aggressive radiation twice a week and chemotherapy through a combination of IVs and pills. He was incredibly sick from the treatment (vomiting, nausea, exhaustion), but he continued to work. It wasn’t an easy job either; he was a floor bagger, lifting 300-pound machines up several flights of stairs. It was on 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 room revealed he had suffered a brain aneurysm – this is when a weak area in an artery that supplies blood to the brain swells. However, when one of these aneurysms ruptures, it causes hemorrhage, which 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 left a cavity or hole in his brain that allowed the blood to pool. He further explained that a possible reason the artery was weakened was from the radiation.
It took him several months to recover from this. But when he recovered, he went right back to work and raised his three children alone. That’s when things started to really go downhill for him. The doctors had him on high doses of steroids to reduce swelling and on Depakote to prevent 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 hump in the neck)
- Pooling of fluid in the extremities
- Potential for steroid-induced diabetes
Unfortunately my brother did develop diabetes and was given insulins and blood sugar testing several times a day – that was one of my jobs. He was an extremely athletic and active person (for example, he got up at 4:00 am to pull lobster pots (200 pots) as a hobby before work; then he sanded and refinished floors all day; after work he rode. or 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 gain almost 100 pounds.
He was functioning well – but he was slower, less coordinated, and his speech was misunderstood. 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 worsened and he started getting headaches again. We went to the hospital and what they told us broke us.
The tumor was not only back, but it was the worst kind of tumor – the fastest growing and inoperable. The tumor suddenly grew like fingers spread across his brain.
Kim quickly lost her ability to walk, talk, feed herself or use the bathroom. He lost all dignity at this point. He had to be fed, diapered, and put to bed. He survived like this for about six months. He did not want to give up his independence and he will try to walk, but fall on the floor. He was 6’2″ and 160 pounds before the cancer; after all the medication, therapy, and a sedentary lifestyle, he was still 6’2″, but he was 260 pounds. Trying to pick him up was difficult – in fact, impossible. My parents were in their 70s and they would try to pick him up – it took the three of us to get him back to bed many nights. It was tiring, but absolutely heartbreaking.
Kim stayed in my home until he died. I will never forget the volunteers who came to my home just to sit with my brother – read, talk or tell – anything to allow the family to have a small break from the constant caregiving. Their willingness to serve kept us from feeling alone and allowed us opportunities to go to the store without worrying.
Hospice came in towards the end and monitored him. He had difficulty communicating. His breathing was so labored, he was rarely lucid, and he was in pain. The Hospice workers gave him morphine to relieve the pain and he stopped fighting to live just one day later, on March 16, 2001. He was 49 years old.
I hope this information helps even one person understand what families dealing with a gbm diagnosis can experience.
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