By 
If you recently discovered that you, a family member, or a friend have been diagnosed with mediform glioblastoma (gbm), you are most likely wondering, “What’s going to happen?” Of course, this is just one of the 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 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 daughter ran up to a neighbor and told them that something was wrong with her father. Tests at the hospital revealed that he had a tumor, that’s all we understood. The doctor said we needed to have a “hatch” put in my brother’s skull so they could remove the tumor, but be able to repeat the procedure frequently. Why would they repeat the procedure? Because removing a tumor means removing a small portion of the tumor at a time; then when he comes back, the doctors would invade my brother’s brain again and take some more of the tumor.
Not satisfied with it!
Doing what I do best, I researched everything I could find – reached out to medical contacts to find the names of the best doctors near us. My brother and I traveled to New York to see a neurologist on Park Avenue. Apparently he was well known for his understanding of brain tumors. At the end of the visit, he recommended that my brother put his affairs in order, because he only had a few months to survive. He told us that the tumor was cancerous and that surgery would not solve the problem.
A friend of my mother had a nephew who was a neurologist in Boston. We sent you my brother’s MRIs, X-rays, and test results. He immediately called and said that the Boston neurosurgeon could help my brother. We made an appointment and met the doctor. What a difference!
This doctor explained everything so clearly. It offered hope, but not the 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 (rapid MRI scans) that provided input for the doctor to create a 3D image of my brother’s brain in order to prepare for surgery. During the surgery, 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 what little amount of hair was left seemed out of place. The rest of his head bore scars that his two-and-a-half-year-old daughter described as a baseball. (I’m sure he 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 a wound infection or a deeper infection from exposure in the hospital.
- Bleeding – This could be a superficial bruise or a deeper pool of blood
- Loss of smell or loss of cerebrospinal fluid through the nose if the doctor uses a frontal approach to remove the tumor.
- Damage to the cranial nerves resulting in facial numbness, vision loss, or double vision
- The need for a blood transfusion during or after the procedure.
- Weakness, numbness, speech disturbances, or paralysis (symptoms similar to those of a stroke)
- Epilepsy, which may require medication (this happened to my brother)
- Surgery may not cure this condition and additional treatment may be necessary.
- Eat or death
This was just the beginning, but that surgery allowed Kim another six years with her children. Meanwhile, he underwent aggressive radiation twice a week and chemotherapy through a combination of IVs and pills. He was incredibly ill from the treatment (vomiting, nausea, exhaustion), but he continued to work. It was not an easy job either; he was a floor sander, lifting 300-pound machines up several flights of stairs. It was during one of these escalations about three years after the resection that he had an incredible headache, the worst he had ever experienced.
The local emergency room revealed that he had suffered a brain aneurysm, this is when a weak area in an artery that supplies blood to the brain bulges out. However, when one of these aneurysms ruptures, it causes bleeding that leads to further brain damage or even death. The doctor explained that the only reason my brother did not die from this hemorrhage was because the resection of the tumor had left a cavity or hole in his brain that allowed blood to pool. He further explained that one possible reason the artery was weakened was radiation.
It took him several months to recover from this. But when he was cured, he went back to work and raised his three children alone. That’s when things started to go downhill for him. Doctors gave him high doses of steroids to reduce swelling and Depakote to prevent seizures.
These were some of the side effects he suffered:
- Insomnia
- Increased appetite and potential for weight gain.
- Personality changes (ranging from bad mood to psychosis)
- Loss of muscle mass (especially in the thighs, which support the weight of the patient when standing up, sitting down and walking)
- Swollen appearance (distended abdomen, cushingoid swelling of the face, and sometimes a hump on the neck)
- Accumulation of fluid in the extremities
- Potential for steroid-induced diabetes
Unfortunately my brother did develop diabetes and receive insulin injections 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 am to take out pots of lobster (200 pots) as a hobby before work; then he would sand and repair floors all day; after work he would either assemble her mountain bike or touring bike for 20 to 30 miles; and finally, she would clean the house and take care of her three children). He really struggled to become sedentary and gain almost 100 pounds.
It worked well, but it was slower, less coordinated, and his speech was confusing. He had MRI scans 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 worsened and she began to have headaches again. We went to the hospital and what they told us broke us.
Not only had the tumor come back, it was the worst type of tumor: the fastest growing and inoperable. The tumor had suddenly grown like fingers scattered all over his brain.
Kim quickly lost her ability to walk, talk, eat, or use the bathroom. He lost all dignity at this point. He had to be fed, diapered and bedridden. He survived like this for about six months. He did not want to give up his independence and tried to walk but fell to the ground. He was 6’2 “and 160 pounds before cancer; after all the medication, treatment, and sedentary lifestyle, he was still 6’2” but weighed 260 pounds. Trying to lift it was difficult, in fact, impossible. My parents were in their 70s and trying to pick it up; it took all three of us to put him to bed many nights. It was exhausting, but absolutely heartbreaking.
Kim stayed at my house until she 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 allow the family to take a little break from constant care. His willingness to serve kept us from feeling alone and gave us the opportunity to go to the store without worrying.
Hospice came towards the end and monitored it. He had difficulty communicating. His breathing was so labored, he was seldom lucid and in pain. Hospice workers gave him morphine to ease the pain and he stopped struggling to live just a day later, on March 16, 2001. He was 49 years old.
I hope this information helps even a single person understand what families facing a gbm diagnosis may be experiencing.