Monday, November 26, 2018

Case Study #56 - Tim Mastering 5 Pin Bowling

Prep Sketch
Tim Golumbia is a 55-year-old social worker. He was diagnosed with NF1 at about the age of 12. His was a mutation as there had been no NF history in his family. He had cafĂ© au lait spots and a few growths but nothing significant. He started puberty at the age of 7 and had an early growth spurt resulting in his being taller and hairier than his peers. This resulted in significant teasing and bullying. The ill treatment from his peers intensified due the added burden of a speech impediment and a learning disability. Tim’s coordination and balance were very poor so he did not perform well in sport-related activities in gym class. Tim was shy about changing for gym or going without a shirt not because of the NF tumours but because he was teased about his appearance. School was difficult academically and socially because of his social awkwardness, lisp in his speech and clumsiness.

Tim has had 6 or 7 procedures to remove tumours on his skin. The ones removed were mostly to determine what they were and if they should be a concern. Tim has a growth in a finger on his right hand that has been trimmed twice, the last time when he was 15. Since that time, it has grown back again but he has decided that since it is not in the way or causing problems, he will leave it be. In around 2005 he had some small growths on his neck removed as they were being irritated by his shirt collars. Tim is not bothered by the presence of his tumours and does not feel it is necessary to remove them unless they are causing pain or other problems. He wears them with pride and welcomes questions and queries from strangers about what they are. An acquaintance once asked him why he never had a large tumour on his temple removed and Tim asked why the person why it should be removed. It is a part of who he is and it does not bother him.

Tim did not meet any other peers who had NF until around his 40th birthday. He attended a symposium in Vancouver and it was an eye awakening experience. He sat at a table with a number of parents of young children who inundated him with questions about his experiences and for thoughts of what they may expect to experience as parents. He also felt comfortable yet uncomfortable around other people who had NF. It was a strange experience to see others with bumps. But the level of comfort grew quickly but also gave time an understanding of how others may feel and react when they meet him. Not long after this first symposium, Tim was contacted by the executive director of the British Columbia Neurofibromatosis Foundation (now known as the Tumour Foundation of British Columbia) about becoming a board member. They had felt Tim’s positive energy and thought he would be a great addition to the board. Within months Tim was on the board and acting as treasurer. Shortly after that the President had to step down and Tim stepped into the position. He was awarded the BCNF Paul Ralfs Volunteer of the Year award for 2012 by the board of directors. Tim resigned from the BCNF board in 2015 but became vice president of the Alberta Tumour Foundation in 2016.

Tim’s learning disability affected his schooling. His intelligence was higher than normal but he performance was low. He tried attending a university but did not get past the first year due to his low marks… a few years later he tried again and succeeded. The difference the second time was
that he had a computer that allowed him to get his thoughts down in an organized manner. He also had a new passion to become a social worker. He graduated with a Bachelor of Social Work. He used that degree to enter the field of Child Protection, or Child Welfare Services. He has been employed continually since 1993 in this field.

In 2010 Tim was working one day in Nanaimo British Columbia when he was asked to assist a child services office in Edmonton Alberta. Tim was asked to interview children staying with family in Nanaimo to assist with an investigation in Edmonton. During the initial phone call, he mentioned he talked about his bumps as a way of breaking ice with children… and mentioned they were called Neurofibromatosis…. The Edmonton worker replied that she had a co-worker with NF and then asked Tim if he was single. She referred to herself as cupid and the interrogation began. 2 days later Tim was talking to Gail. It became a daily one-hour phone call for the first month at which point Tim sent Gail flowers, and Gail then booked a trip to Nanaimo to meet Tim 2 months later. The courtship continued with each visiting the other’s home twice a year. Tim Proposed in April 2012 and Gail said yes! Tim moved to Edmonton in June 2013, they were married in August 2014 and they continue to live a wonderful life together today.

Tim enjoys golfing, 5-pin bowling and walking their dogs. Tim continues to work in Children’s services and plans to retire in early 2021.

Saturday, November 17, 2018

Case Study #55 - Jake Hitting the Ice

Prep sketch for painting
Jake is a native of Edwardsville, Illinois, across the river from St. Louis, Missouri. He was diagnosed with NF2, in January 2003 at the age of 18 after he noticed he could no longer hear out of his left ear. In June 2003, one week after graduating high school, he had surgery to remove the left acoustic neuroma. Five years later, Jake lost the hearing in his right ear, and was left completely deaf. It was also discovered that he had a winged left latissimus dorsi muscle due to one of the spinal tumors. The deformity had really deteriorated the range of motion in his left shoulder. Jake’s doctor, Dr. Benecke, suggested sending him to Massachusetts General Hospital in, Boston. It was there he met Dr. Scott Plotkin, who suggested they try to treat the NF2 with the chemo drug Avastin. Jake has been on and off Avastin ever since, and the drug has been extremely effective in helping him keep his NF2 symptoms in check.

Despite the positive effects Avastin, Jake still feel the effects of NF2. He has cataracts in both eyes. According to him, that can make golf a little complicated; his playing partner will have to help him track his shots. He gets nerve pain whenever the weather changes. There are good days and bad days. And he says you can’t really predict which days are going to be good and which are going to be bad. Jake’s philosophy, “I just kind of take life one day at a time.” In January 2012, Jake had to have a second brain surgery, to remove a tumor that was right on top of his skull. The surgery was successful, in large part due to the skill of his surgeon, Dr. Curry. He had to spend a week in Boston post-op, but his recovery was amazingly fast. To quote Jake, “I was very lucky.”

Jake also describes having issues with fatigue, and he worries a lot about the health of his kidneys because of long-term Avastin use. Because of this, he tries to really be mindful of what he puts in his body. According to Jake, “I drink at least a gallon of water a day, and avoid gluten, dairy, and any kind of processed food. I’m always gearing up for the next battle.” There’s a tumor on Jake’s spine that is most likely going to have to come out at some point. The surgery is going to be a challenge but he’s prepared to deal with. He realizes the recovery will no doubt be a grueling process. While the surgery is not official yet, Jake is already working out a recovery plan. His chiropractor, Dr. Ashley Eavenson, has promised Jake that even though he won’t be able to hear the music, she will at his request, blast the Rocky theme song in the training room, while he knocks out rehab sessions.

Jake has a degree in Creative Writing, which he obtained online through Southern New Hampshire University. He’s attempting to write a book, detailing his battle against NF2, and his life as a late deafer. It’s a work in progress. “I have a long way to go.”

Jake can’t hear and that’s a major setback, but his mentality is that if you focus enough on what you can do, then what you can’t do is irrelevant. “NF2 sucks but you deal with it and make adjustments. I enjoy being active, it’s a good way to boost confidence and deal with the anxiety NF2 causes.”

Jake’s greatest love, after his little sister, nieces and nephew, is hockey. According to Jake, he picked it up late in life. “I was 31 when I started, that's old in hockey years.” He pursued it anyways because it struck him as a great way to fight NF2. Hockey is a game that requires balance and coordination, two things that NF2 reeks havoc on. None-the-less, he figured it out. Jake makes it clear that It was by no means easy. “I spent the whole summer that year, doing really brutal conditioning work, because I knew my body would have to work twice as hard, to compensate for my less than optimal balance.” That was a little over two years ago; he’s been playing ever since as much as possible. Jake’s blunt in saying, “I have no fantasies about being the best player on the ice.” He makes it clear that’s not what it’s about; it’s about knowing that he didn’t let NF2 stop him. It took him a lot of reps, but he’s gotten to the point that he feels comfortable and confident on the ice. “While I’m by no means graceful, I’ve overcome the mental roadblocks and taught my body a lot of new moves and motions.”

Jake sees playing sports as a great way to hit back at NF2. It keeps his body healthy physically, and it feeds a certain part of his psyche that nothing else feeds. Jake also hopes to show other patients, especially kids with NF2, that their disease doesn’t stop them unless they let it. In an effort to spread awareness, Jake had his own hockey jersey made. It proudly displayed the words “NF Fighter” on the front, and since he has NF2, he had the words “Type 2” sewed on the back.

Hockey is tough, and it’s not for everyone, but Jake say’s for him, it’s the best method for coping with NF2. To quote Jake, “I’ll be out on the ice either playing or training, and I’ll be just totally gassed, my legs shaking, and my brain begging me to stop. Then I look down and the “NF Fighter” on my sweater. Then it hits me. “This is it dude, this is where you beat it, right now in this moment. You’re not just training to play hockey, you’re training to beat NF2. You’re preparing for the next surgery, by making you’re making body and mind too strong for NF2 to handle. You don’t suffer from NF2, it suffers from you.” Jake has resigned to the fact that he’ll have to go under the knife again. In those moments, he likes to remember a quote from his martial arts instructor, Joe “THE Boss” Mayberry, “chicks dig scars and you come across one that doesn’t dig scars, she’s not worthy of your time.”