If you’ve recently found out that you, a family member, or a friend has been diagnosed with a glioblastoma mediforme (gbm), you’re most likely wondering, “What is going to happen?” Of course, this is only 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 get 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 that he had a tumor – that’s all we understood. The doctor said we needed to have a “hatch” put into my brother’s skull so that they could excise the tumor – but be able to repeat the procedure often. Why would they repeat the procedure? Because excising a tumor means taking out small portion of the tumor at a time; then as it returns, 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 out – 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, well renowned for his understanding of brain tumors. At the end of the visit, he recommended that my brother get his affairs in order, because he only had a matter of months to survive. He told us that the tumor was cancerous and surgery would not solve the problem.
A friend of my mother had a nephew 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 that he could prepare for surgery. During surgery, Kim had to stay awake so that the doctor could ask questions. Kim had to identify pictures and words and answer questions throughout the surgery so that the doctor could determine if he was resecting (removing) tissue too close to functional areas of his brain.
He ended up shaving his whole head, because the little amount of hair remaining 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 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 superficial bruising or a deeper collection of blood
- 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, which may require medication (this happened to my brother)
- The surgery may not cure this condition and further 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 IV and pills. He was incredibly sick from the treatment (vomiting, nausea, exhaustion), but he continued to work. It wasn’t easy work either; he was a floor sander, lifting 300-pound machines up several flights of stairs. It was during one of these climbs approximately three years after the resection that he got an incredible headache – the worst he’d ever experienced.
The local emergency room disclosed that he’d suffered a brain aneurysm – this is when a weak area in an artery that supplies blood to the brain bulges. However, when 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 the artery was weakened was from the radiation.
It took him several months to heal from this. But when he healed, he went right back to work and raising his three children alone. This is when things began to really go downhill 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:
- Insomnia
- Increased appetite and the potential for weight gain
- Personality changes (ranging from moodiness to psychosis)
- Muscle loss (particularly in the thighs, which bear the patient’s weight when rising, 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 received insulin shots and blood sugar testing 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 am to pull lobster pots (200 pots) as a hobby before work; then he sanded and refinished floors all day; after work he would ride either his touring or mountain bike for 20 to 30 miles; and finally, he would clean the house and care for his three children). He really struggled at becoming sedentary and gaining almost 100 pounds.
He functioned okay – but he was slower, less coordinated, and his speech was garbled. 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 was clear, Kim’s speech got worse 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 had suddenly grown like fingers dispersed throughout his brain.
Kim rapidly 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 was bed-ridden. He survived like this for about six months. He did not want to give up his independence and he would try to walk, but fall on the floor. He had been 6’2″ and 160 pounds before the cancer; after all the medication, treatment, and 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 into bed many nights. It was exhausting, but absolutely heartbreaking.
Kim stayed in my home until he died. I’ll never forget the volunteers who came to my home just to sit with my brother – read, talk, or tell stories – anything to allow the family to have a small break from the constant care. Their willingness to serve kept us from feeling alone and allowed us opportunities to go to the store without worrying.
Hospice came in toward 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 a day later, March 16, 2001. He was 49 years old.
I hope this information helps even one person to understand what families dealing with a gbm diagnosis may be experiencing.