From the very beginning of Ed's journey with brain cancer, he experienced many, many side effects.
Ed had a glioblastoma multiforme tumor, a tumor that the doctor believes started growing approximately one year before his first symptom. The first side effects of this tumor was muscle weakness, a change in breathing, a slight personality change (seemed very quiet, looked like he was deep in thought or in 'another world'), and finally, seizures.
He had brain surgery to remove the mass from his brain, and the immediate side effects of the surgery were nausea and pain at the incision site, and brain swelling (edema) and weakness, loss of appetite. The long term effects of the surgery were continued brain swelling and pain at the site, and muscle weakness. He also developed a bad case of hiccups that were finally controlled by a drug used to calm your nervous system.
Ed was put on various medications to control his seizures and brain swelling. Side effects of the seizure medications were muscle weakness, sleepiness, dizziness. The side effects of steroids, used to control brain swelling, was increased appetite and weight gain, and muscle weakness.
Soon after his surgery, he began radiation. The side effects of radiation were a blistered scalp, hair loss and destruction of brain tissue that controlled the right side of his body (his tumor was on the left side of the brain, which controls the right side of the body) and destroyed speech . . . slowly but surely.
Along with radiation, Ed also began chemotherapy. The side effects of chemotherapy were weakness, loss of taste and smell, and brain 'fog'.
Because of his illness, treatments and medications, Ed became quite immobile. He was urged to exercise, but he didn't feel like doing a whole lot of walking. A side effect of his immobility was a DVT (deep vein thrombosis), a blood clot, in his right leg. He had to take injections and later medication by mouth to thin his blood. A side effect of the blood thinner was easy bruising.
His sense of taste was so badly effected that foods and drinks he loved in the past were things that nauseated him now. He used to have a peanut butter and jelly sandwich with a glass of milk before bedtime nearly every night, and he enjoyed that immensely. And now these things made him sick to speak of them.
As time went on and Ed was on various medications longer and longer and some medications being increased in dosage and/or strength, more side effects appeared...including constipation, mouth fungus and yeast infection, losing the ability to use his right side and later the inability to use anything but his eyes and mouth and maybe move his fingers. Also, from near the beginning of his treatments he developed a sensation of water trickling down his arms, that is the best way he could describe it. His feet turned nearly black from bad circulation. He dealt with constipation and stomach upset. He needed the medications and treatments to stay alive as long as he could (or as he believed, to beat his cancer), but the side effects were sometimes as bad as the illness I think.
Other side effects of his illness and the treatments were the changes in his life style they brought about. He was always a man in motion; working at his job, working at home around the house or on various projects, driving and being completely independent. But now he couldn't work, couldn't drive, eventually getting to a point that he couldn't dress, bathe or feed himself. He always took care of his wife, my mother, but now the roles were reversed.
Other side effects were that because he received chemo treatments he was poked with needles every week. He took intravenous chemo treatments every other week, so the week before chemo he had to get blood work done to measure the amounts of toxins in his bloodstream, and different levels of white blood cells, iron, etc. to see if his body was tolerating his treatments well, and to keep an eye on the blood thinner he was on. Therefore his veins began to deteriorate from all the sticks.
One good side effect, I do believe got more in touch with his spiritual side because of his prognosis. He began to discuss his beliefs with ministers and began reading healing passages from the Bible.
Ed tried everything he was physically, mentally, and emotionally able to do to try and get well. He took chemo treatments well after his body showed signs of distress. He read the Bible and prayed. He would do some exercise in bed, squeezing a rubber ball and lifting small weights. He ate asparagus...took it by the tablespoons full like medicine, because he heard it might prevent the growth of cancer. He stopped eating sugary foods, as he had heard that might 'feed' cancer.
Near the end of his life, Ed had more side effects to deal with. Because he was now completely bedridden, he had to have a catheter inserted in able to urinate. Because fluid easily built up in his lungs, he took more medications to loosen up the mucus and clear the airways. Sometimes eating would now cause him to vomit and or have terrible coughing spells.
The last few days of his life, Hospice started administering morphine drops to control his pain and help with his breathing. The side effects, despite Hospice personnel telling us otherwise, he began sleeping more than being awake. Because food now went into his lungs if we fed him, he no longer took water or food. I am not sure what side effect this was from, but he began having deep hiccuping, which happened periodically the last days of his life. He would wake up now and then, and we would hold his hand, talk to him, and soothe him the best we could. A side effect from being taken off his seizure medications were something like electricity that coursed through his arms and legs and head. At least that is what I think it was.
The final side effect of all this; Ed stopped breathing in the early morning, the day before Easter.
As a terminal cancer patient, are you danged if you don't , and danged if you do? If you don't take treatment and medication, do you risk living a shorter life? If you choose treatment and medication, you must also choose to deal with the side effects. For some, like Ed, the choice is easy. You choose to do whatever you think might heal you, or at least keep you with your loved ones as long as you can.
