Tuesday, March 18, 2003

Dad’s Surgery: tumour removed

I arrive in Toronto, off to the hotel to meet up with Mom after Dad’s surgery to remove the tumour. My mother was quite upset. She said that Dad has bruising around his face and kept falling out of bed. He has always gotten up in the night to go to the bathroom. He refuses, or cannot remember, to call for a nurse for help, nature calling him rather loudly, and falls, Mom tells me. His face is terribly bruised. It breaks my heart to look at him. I wonder why he will not be restrained or have a bedpan. Both cheeks were black and blue. He has these huge staples in a large U shape on the leave side of his brain. I feel sick to my stomach. I feel such agony knowing that I cannot prevent his pain. I find out, after some pain and crying, that the bruising was due to the surgery and not his falling. At the time it was a horrible thing to think about. I wish someone had told me. I still feel sick to my stomach thinking about it.

Dad cannot talk at all. It makes visits frustrating. We write things down on a piece of paper for him. It takes a lot of time. Jesse, 20 years old and my middle child, visits the 2nd day. Jesse was living in Toronto and attending York University, which is not too far away. He is brave to visit. I find it rather excruciating. Dad is disoriented and asking the same questions several times. He never buzzes for help from the care staff, and we are worried he will fall if he gets up. He has to go to the bathroom several times while we are there and leaps up out of bed, flashing his equipment to us, desperate to get to the bathroom. This was like an inoculation and prepared me for all that happens later.

His voice is scratchy. All of the hair above his ear is gone. He is talking gibberish. Mom and Dad do not always remember what the doctors say to them. It was the beginning of my frustration that they will not allow me to be part of this process. I should have insisted. Doctors think Dad will have radiation, but they are not sure. This is whether the tumour is benign or not. He can walk, at least, but his arthritis is worse.

I went out to the bookstore, while buying dinner for Mom who was back in the hotel room. Mom wanted chicken from a well-known fast food place, even though it usually upsets her stomach; I bought myself sushi to take back to the room. I have forgotten how great it is living in the middle of a city. I bought the book, Talk, Talk, Talk, by Jay Ingram. I know it explained some of the quirks of the brain and language. I read some of the parts out loud to Mom. It helps to understand a bit of what was going on in Dad’s brain regarding language. By now Dad can put together smaller sentences, but is unable to retrieve nouns. He can describe “those animals with black rings around their eyes. They eat garbage.” The word raccoon was somewhere in his brain cells but will not come to the surface. As irretrievable as his old life.

Thursday, March 6, 2003

Diagnosis: Broca's Area

Dad had to go to Toronto for his pre-operative visit. Another long day - driving, sitting, waiting and returning home. Today the situation is reversed from our last visit. Brian and I travel to Toronto to help Mom and Dad prepare for Dad’s surgery to remove what they decided, through the MRI, was a brain tumour. It is located in the prefrontal cortex, Broca's area, in the left frontal lobe above the basal forebrain.

They know that his language will be affected, as the tumour is in Broca's area, and his surgeon tells us not to worry about that when that happens. It is ‘normal’, they say. They are sure which language skills will be affected but thought that gradually some or all of his language skills will come back. I find out later that the prefrontal cortex affects a great deal of cognitive functioning, as well as language. Dad has trouble retrieving nouns. This proved to be a clue later in 2006 for me. Brian takes time off work. He flew to Toronto to be with my parents for Dad’s preoperative visit. Dad has to have some tests. I am ill with bronchitis and cannot go. Dad has blood taken and other tests are done to prepare for his surgery.

With dad's diagnosis of a brain tumour dad was given an information book published by the Brain Tumour Foundation of Canada. It provides information about the cell and how cells function. I had done a great deal of work on teaching and the brain and how it functions in order to better understand the minds of my students. Dad's tumour was in the prefrontal cortex which plays an important role in memory, intelligence, concentration, temper and personality. This is a sophisticated part of our brain that facilitates the setting of goals, the ability to make plans and judge priorities. It guides our eye and head movements and sense of orientation.

Dad's cancer is said to below grade hemispheric astrocytoma. He had mixed gliomas classified into oligo-astrocytoma. Treatment usually involves surgery, depending upon the characteristics and numbers of astrocytic cells present.

Monday, February 24, 2003

Dad's Grand Mal Seizure

Here are mom and dad around 1945.

My dad was diagnosed with a brain tumour in 2003. He had surgery in 2003, just after Mom’s 2nd surgery for cancer. (She ended up having 6 surgeries, radiation and chemo.) The tumour affected all of Dad's critical thinking skills, as well as language processing. It was difficult. A friend suggested that all you can do is to look for the diamonds every day. A diamond was a small moment when you feel great joy, love or a special moment of bonding, when that father-daughter relationship manages to shine. There were many such moments in all the chaos. Eventually, I became clinically depressed, had to quit work, and focus only on Dad. It was all I could cope with. I begin going in and feeding Dad dinner, as he couldn’t manage eating utensils. This was well after he lost his ability to use the phone, had lost his hearing aids, and could not figure out the TV clicker. He died on February 16, 2007, in Leisureworld; I was there with him.

Dad was in the kitchen preparing a snack. Dad was fixing it since as Mom is still weak and tired and they had just come home from her surgery. I should describe the house. It is built on a rock, as the pink, gray, white, and black of the Precambrian shield rises up out of the ground, a perfectly solid foundation. The second floor is a large bedroom, 16 x 24 feet, with an ensuite bathroom. The sliding glass doors look out over the lake. Or they could, if the overgrown trees were not there. The main floor is open concept. Perfect to call to someone, or bellow orders across the living room, dining room and into the kitchen. The woodstove, the main heat in the house, sits in the one mini-wall of the living room. Off the living room in the TV room, down the wee hall is a bathroom and what should have been a bedroom. Mom and Dad decided, since it was their retirement home that they do not need another bedroom and this is Dad ’s office, with sliding glass doors that go out to the driveway. The house is on a small lake in Bala, the self-proclaimed Cranberry Capital of Canada.

Mom rested on the couch on the main floor, as she was unable to make her way up the steep stairs to her bedroom. She was sore and was told to limit her activity- as if that would stop her! Her incisions became infected and she needed antibiotics later. Dad had his seizure in the kitchen, falling to the floor on the hard linoleum. Mom phoned 911 and the ambulance attendants had to wend their way into the house through the office, a back door, the only doorway with decent enough access. They would come to use that doorway a lot! I cannot imagine the stress and fear she faced.

Dad went by ambulance to the hospital in Bracebridge. Mom stayed alone at the house. They decide that tests are warranted, including an MRI and a Catscan. She told me, “I know in that instant that our lives will never be the same again.” If only she will come to understand this and make changes. Mom is still recovering from her surgery. She has to ensure that her stitches do not become infected, She has sitz baths, and uses the blow dryer after every visit to the toilet, and must continue this perineal care for months. Even so, she contracts an infection and requires antibiotics. Thankfully the homecare nurse helps her. They only qualify for a few nursing hours a day at home. I did not realize how much they needed help at the time. Neighbours began to pitch in.