Jim's Story

Jim's Story

The challenges and rewards of living with a brain tumour.

Trying to identify the positive aspects or rewards of this experience can indeed be a challenge!

It is my sincere hope that this story might provide some useful information to brain tumour patients and motivate them to look positively at their situations.

The impetus for me to write this story came in October of 2010 when one of the members of my Rotary Club asked me to be a guest speaker to share my experience of living with a brain tumour. I wasn’t sure that anyone would be interested in what I had to say. I prepared a talk to share my experience. It turned out that people really did care. They were interested as they learned about the brain tumor problem in Canada and they were moved by some of the things I had experienced.

A couple of other motivators for this story were a book by Claudette Brown titled Looking for Heaven on a Journey through Hell. Cruising the Brain Tumour Foundation of Canada website and reading the stories of other survivors also prompted me to write my story down.

On January 7, 2009 I got up from my desk at the municipality where I worked as county manager for 30+ years. I had made a doctor’s appointment just after noon that day to see Dr. Leon about what I thought was a sinus infection causing terrible sinus headaches over the previous couple of weeks.

As I made my way through the office to exit the building, I lost my balance and seemed to be tipping over sideways, kind of bouncing off the walls. Some of the staff intercepted and helped me as arrangements were made for someone to drive me to the doctor’s office. Dr. Leon almost immediately told me to go to emergency at the hospital and that he would meet me there soon. Someone called my wife Barb and she met me at the doctor’s office right away. Since that moment she has never left my side, literally spending every minute to be with me and encourage me up to the present date.

The doctor consulted with a neurosurgeon and arrangements were made to get me a CT scan. The scan showed some sort of cyst or growth about the size of a golf ball in my brain. I was admitted to the local hospital for observation, and to wait several days for more consultations and an MRI in Edmonton.

This not just my story. It is also Barb’s story. Throughout the story when I use the word “we” I am referring to Barb and I. For well over three years we have become one entity as I rely on her knowledge and abilities to help make all of the day-to-day decisions in my life.

The story unfolded and her life changed just as dramatically as mine did since that ominous day in early January 2009. It is also the story of my daughter Jeanna and her husband Gavin as they were there to support and help, and to visit and support me and Barb in the hospital and throughout my recovery period.

While I was waiting in the local hospital to go for the CT scan, Jeanna came into the room carrying some kind of black electrical device. I was bored and she said we could use it to hear our stomachs rumble which should be entertaining. Jeanna went first and instead of rumbling, the speaker played a fast and rhythmic bom.bom.bom.bom.bom. Barb started to cry. I told her not to worry, that I was going to be fine. She said Jeanna is going to have a baby! That’s the baby’s heartbeat we are listening to! What a wonderful way to discover we were going to be grandparents and to help me focus on what is really important in life. This was to be Jeanna’s first baby and Barb and I couldn’t have been more elated.

The next week brought more consultations, tests, an MRI with Jim trying to rest in between. Once the MRI was done and the neurosurgeon, Dr. Dave had reviewed it, we had an appointment with him to hear the results and discuss the options. We were told that I very likely had a pretty nasty type of tumour growing in the right temporal lobe of my brain. Based on the discussions with Dr. Dave, Barb, Jeanna, Gavin and I decided that immediate surgery followed by radiation and chemotherapy would be the best course of action.

At one point in our meeting with the neurosurgeon, he asked if there were any questions. Jeanna asked him “are you any good”? He smiled and said that most neurosurgeons have pretty big egos, and, yes, he was one of the best. That was the beginning of an excellent and productive relationship between us and Dr. Dave. We came to appreciate his communication skills, the fact that he never hurried an appointment, and always takes the time to explain things and answer any questions we might have.

The surgery, a resection of the part of the brain where the tumour is located, was meant to remove as much of the tumour as possible. Surgery was scheduled for January 15, barely a week after my balance attack at my office. As I was wheeled into the operating room I sensed a sort of sombre mood. Nobody talking and no music like you see on the doctor shows on TV. At that point I asked for everyone’s attention for a moment. I said I just found out that I have a date to meet my first grandchild in six months so I hope all you people brought your A game today… Let’s get this done quickly and let’s get it done right! There were snickers, smiles, laughter and conversations throughout the room. And I felt much better about the mood in the operating room.

The surgery was described as a success as they removed a large portion, but not all, of the tumour. The days following the surgery were filled with pain, headaches, disorientation, weird daydreams and the inability to recognize reality. They were probably the worst days of my life so far. I thought I was dying and going crazy. Holding Barb’s hand helped me to get through those terrible days.

A lot of people were sending well wishes and looking for updates on my condition. We had decided not to provide a lot of information to family or friends because my cognitive functions were totally scrambled and I certainly could not see any visitors or take any phone calls. We really didn’t know at that point what we were dealing with or what the prognosis might be. The portion of the tumor collected during surgery would need to go to the pathologist to identify exactly what type of tumor it was in order that a radiation and chemotherapy treatment plan could be designed. Until that happened, we were really just speculating and had no facts to share with anyone. Sharing speculation seemed like a bad idea given the serious nature of my situation.

The brain trauma ward made it impossible to get any rest. I tried to be a model patient and I convinced the doctors to let me go home three days after the surgery, this was apparently unheard of and a much shorter time than normal. I was done being there and longed to be at home. Gavin and Jeanna came up and set up a bed for me in Barb’s office on the main floor of our house. It sure was a blessing to be home and get some sleep. I realized now that I was being very selfish because Barb immediately became my nurse, my care giver, dietician and home care worker 24 hours a day. The demands on Barb’s time and emotions were severe. It was a real challenge to monitor my meds, clean up after accidents, do my laundry, and to get me dressed each day. Buttons, zippers, pant legs and sleeve holes are all still a mystery to me.

We had a consultation with the three doctors, neurosurgeon, radiologist, and chemo oncologist. At one point in that meeting I asked how long I could expect to live. One Dr. said most patients with this tumour didn’t make it to 14 months after surgery. That information hit both Barb and I like a ton of bricks and we both had a good cry. I was sorry that I had asked the question. Later on after much discussion and questioning, one doctor said that he was aware of a patient who lived for eight years after surgery I told him that we needed to work hard to become the new survival record holder starting immediately.

The pathology work seemed to take forever as we were anxious to learn details about the tumor and what we might expect for a treatment program. As coincidence would have it, Dr. Dave’s administrative assistant was from our hometown and I had known her family for many years. Once the pathology report was finally done, a treatment plan combining radiation and chemotherapy was developed. I had radiation treatment and chemo pills every day for eight weeks. We rented a basement suite near the Cross Cancer Institute to avoid driving back and forth every day for radiation treatments.

The radiation was the worst part. I would report to a specialized radiation room early every morning for eight weeks. They made me a fiberglass sort-of goalie mask to immobilize my head as they shot beams at the tumour site with confidence that they were not targeting good parts of the brain.

The tough part was that they used the mask to bolt my head to the table. No movement at all allowed and there was no vision from within the mask, both of which combined to bring on claustrophobia and panic attacks. I dreaded going to the cross clinic every day for 56 days. I began to recite the Lord’s Prayer and the Apostle’s Creed to help me monitor how much more time the treatment would take. No matter how fast I recited them, the procedure didn’t take any less time. Barb came with me every day and was able to explain what the process and weird noises were because she convinced the radiation therapists to let her into the observation and control booth. The process was a bit easier once I had an idea of what was going on.

Jim and his two grandchildren on his 60th birthday

We were pretty well done with both types of treatments after eight weeks. The daily chemo pills continued and I still take two kinds of chemo pills totaling 11 of them every day. Over the past three years the doctors have prescribed me four different types of chemotherapy pills. I am lucky and grateful that I could take pills instead of intravenous chemo. The first set of chemo pills was a little hard to stomach. My body seems to be able to handle the pills with only a few negative side effects.

Once the reality of my condition sunk in we talked a lot about what should be the prongs of our prevention and battle plan to control or fight or live with this tumor thing. Some of the points we agreed to pursue are as follows:

  1. Listen to the Cross Cancer Institute doctors. Take their advice to heart and carry out their instructions promptly and to the best of my ability.
  2. Remain as positive as possible and refuse to dwell on the negative aspects. Refuse to be led into despair. Adopt an attitude of hope and positive thinking. One exercise to promote this attitude was to form an e mail group called ‘team Jim’. The group grew to 45 friends and family who had expressed their support and agreed to keep me in their prayers, to think positive thoughts about my health and my future, and to continue to send their love and support my way. Team Jim members receive an update e-mail right after my MRI and exam every 3 months. The best wishes and expressions of support just keep coming and they motivate me to focus on survival and work hard to deal effectively with the tumour.
  3. Know your enemy. Learn as much as we can about glioblastoma multiform tumours and their treatment. To this end Barb, Jeanna and I attended the brain tumor foundation day in Calgary in early 2010. We all scoured the internet for information and Barb read books about dietary impacts on tumours and the functioning of the brain.
  4. Celebrate our victories. At this time I began to set benchmarks and milestones to be there for important events. The first was, of course, the birth of Jeanna’s baby. Elliott Adelle was born in June 2009. Barb and I were there to be with her in her first hours. I guess those folks in the operating room did indeed bring their “A game” on that January day after all!When you have been diagnosed with a terminal cancer, life and family events like birthdays and anniversaries become important milestones to strive to achieve. Not only did I want to share those events with family and friends. I also wanted to spend as much quality time as possible in the future with those who love me. In order to accomplish that, I had to live as long as possible and remain healthy enough to lead a sort of normal life. Staying alive is job# 1.Next on my list of events to attend was my retirement party in July 2009, my 57th birthday in July 2009, Barb’s birthday, our wedding anniversary in September 2009, Christmas 2009 (Elli’s first Christmas), and the one-year anniversary of my surgery on January 15, 2010.We now have another annual event to be there for as Jeanna and Gavin now have a second child, Graydon James. When we learned about the pregnancy, the last week of August was marked on the calendar. We were there for his birth and held him close hours later.

  5. Focus and bring influence on the things we can influence or control, like eating a very healthy and cancer fighting diet, avoiding food that research says supports cancer cell survival, and getting some regular exercise. Don’t waste energy worrying about the things that we can’t change.
  6. Stay as healthy as possible so I will be ready to go when the researchers find an effective treatment for brain tumours, and so I can enjoy every day to the fullest extent while spending time with those who love me.
  7. Use the services of other health care professionals like physio therapy, chiropractic care, and acupuncture and massage therapy.
  8. Trust in the lord. Live life with the confidence that life everlasting is a reality and gives us cause to be content and optimistic as we face life’s challenges.

Live every day keeping in mind those who love you and striving to treat them with respect as loved ones deserving your time, attention and affection. In the months following my surgery I experienced some pretty wild mood swings as the right hand side of the brain controls emotions. On any given day I was full of fear, happy, angry, thankful, sad, worried, and sometimes disinterested or detached. We also noticed that my vocal governor and verbal screening mechanisms were not working. I would blurt out very inappropriate comments without regard for what anybody might think. I am sure that I offended some folks but it didn’t seem to matter to me.

It is now over 44 months since I was diagnosed with a brain tumor. My life pretty much runs in three month segments, as I have an MRI every three months to determine if there is any change in the tumor.

Since January 2009, every three months I have heard the beautiful words “no new growth”.

The challenges were and are many and significant. Once I returned home I developed an attitude that I could do almost everything I could in my pre-tumor days. That approach partly worked as I continued to drive for a short time until close misses and lack of concentration caused us to decide that I would no longer drive. I am blessed that Barb is able and willing to drive whenever and wherever I may want to go. Frustration still sets in when I can’t even drive myself from home to my Rotary Club meetings Wednesday at noon for a distance of only four blocks on a simple route to drive. My left side is kind of weak and I have limited peripheral vision in my left eye.

In the months and first years after my surgery I continued to try and live as normal a life as possible. We flew to Vancouver to see friends at Sechelt on the sunshine coast and took a day trip in a snowstorm on our friends’ boat. Barb, Jeanna, Elli and I drove to Whistler, BC in August 2009 to bring Gavin home from a course he was attending there. Travelling that far with a two-month-old baby makes for a fun and adventuresome trip. We took regular and frequent trips to Edmonton to Jeanna and Gavin’s house to visit and play with granddaughter Elli.

I worked toward being a productive member of society by being active in the community and the Rotary Club. These activities forced me to use my brain to gather information and make logical decisions. Other challenges were related to my balance, my lack of mobility, my inability to concentrate and a lack of cognitive ability. These challenges continue today but they are not quite as severe because I take a steroid to shrink or control the swelling on my brain.

In the spring of 2011 I took a tumble at the golf course driving range, resulting in three broken ribs. Later that autumn I fell very hard. It turns out that I had broken my back in that fall! (Something called a compression fracture of one of my vertebrae.) Following that I had great mobility issues, falling regularly, and great difficulty walking. With the bad back my sleep suffered and falling was a regular occurrence. The continual falls prevented my back from healing. On one day in early February 2012 I fell five times. I call that day black Friday. Barb was of course very distraught as she responded to every noise to find me on the floor. She called the doctors and they decided to put me on a steroid to reduce the swelling on my brain.

Once my back had somewhat healed I could get some sleep. The steroid also seemed to be helping both my balance and my cognitive functions. Barb arranged to get a hospital bed through home care and some members of my Rotary Club delivered and assembled it. The support in a small town is a blessing and helps me to overcome many problems and issues.

By this time we decided that I needed an attitude adjustment towards being more careful while identifying and avoiding falling hazards at home and anywhere I went. We got a walker from home care through the aids to daily living program. Later we also got some bathroom grab bars and a wheelchair.

Life moving cautiously and using the walker diligently was much improved and I have stayed off the floor for several months now.

Finding something positive, or some rewards, from this experience is a challenge in itself. Here are a few…

The power of love is a rewarding learning I’ve taken through my brain tumor experience. Prior to my diagnosis I believed that I could not fall any deeper in love with Barb as our love for each other was all-consuming. As we traveled through this twisted path I fell even deeper in love with my wife of over 37 years. Watching her giving me all of her energy, compassion, and inner strength has made me love her more than I thought was possible. By all those actions she confirms her unconditional love for me and I am blessed to receive it.

I love Elliott Adelle. Her presence motivates me to battle on – to live long so I can watch her grow up. We are so lucky to spend lots of time with her. Every time I look in her eyes or she sits on my knee, my resolve to be here for her important milestones is clearly strengthened. Perhaps a special bond on my part is evident because we learned of her impending birth only the day after my balance attack and I kept my first date with her on the day of her birth.

The power of love is such that one can gain new strength to deal with life’s challenges… with the confidence that the love is reciprocal and never ending. Graydon James also gives me cause to look to the future and I look forward to watching him grow up. I dream about taking him fishing, and playing hockey with him. He already plays a mean game of catch and seems to learn more every day.

The power of prayer, and my belief in it, has been strengthened in me throughout this experience. I was raised as a Christian through the Lutheran Church. Throughout my adult years I fell away from the church, only attending at Christmas and Easter to make my mother happy. Immediately upon my diagnosis I began to talk to God several times each day and at bedtime. I asked him for the strength to handle the physical and emotional impacts of my disease. Every night I thank the lord for Barb being by my side and I ask him to watch over Barb, Elli, Graydon, Jeanna and Gavin. I have begun reading the bible and watch the Christian TV shows on occasion. I am at the point where I have put my faith on the

Lord and trust him to watch over me and give me the strength I need to live with this brain tumour.

With this confidence I can look forward to the future and make the most of every day I am blessed with.

I have developed an enhanced relationship with my mother as well, as we have lengthy phone conversations on a regular basis to discuss important topics. Mom sort of became my spiritual adviser we both learned a lot about each other and the strength of love between a mother and son. She often tells me that god has a plan for me. I have faith that god’s plan includes my mother and I celebrating her 100th birthday together!

Another reward of my tumour condition is to know that I lived a full and productive life until my diagnosis at the age of 57 years. I did have the opportunity to watch Jeanna grow and to be a part of her life. Since my diagnosis I have got to know her much better as we find time to have important discussions. I have also had the opportunity to begin to say goodbye to loved ones at a time that I can still make sense of it all.

In July 2012 I celebrated my 60th birthday with about 40 close friends and family sharing a feast and a lot of storytelling. In my comments to those present I spoke of the three pillars of survival that form the foundation of dealing effectively with my tumor: faith, hope, and love.

I have faith that Jesus Christ our Lord and Savior is preparing a place in heaven for me and that I will have a joyful reunion with those family and friends who arrive there before me.

The second pillar is hope. We hope that the ongoing chemo pills do their job to inhibit tumor growth, and we hope that the diet designed to starve the cancer and to keep me strong continues to help in keeping any new growth from occurring. We hope that seeing the chiropractor, the physiotherapist, and the acupuncturist will work together for my overall benefit. We hope that my moderate free weight training program will help keep me strong to fight this disease. We hope that the brain exercises, crossword puzzles and brainteasers that I do regularly will stimulate my brain to be active and functional. We hope that the multi-millions of dollars being spent on cancer research will result in more effective treatments and procedure to deal effectively with brain tumors.

The third and final pillar of the survival triad is love. Having a strong and deep rooted love for my family and friends motivates me to show my love by doing everything I can to extend my life and to remain functional and mobile in order to have quality time with them.

Every day is a challenge and every day is a blessing.

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