Choices — November 3, 2014

On Sunday, November 2, 2014, two women with brain cancer made decisions that could change the way we look at cancer. 

Brittany Maynard was a newlywed of about a year when she found out she had cancer in January, 2014. Nine days after the initial diagnosis she had a partial craniotomy and a partial resection of her temporal lobe. Both surgeries were attempts to slow the growth of her tumor. In April, she learned that not only had the tumor returned, it had become even more aggressive. She was 29 and had six months to live.   After a great deal of research and consultation it was determined that there was little she could do to impede the ultimate victory that cancer would eventually claim.

Young and otherwise healthy, the cancer would destroy her brain while the rest of her body would continue to function. The last months would likely be a horror for both her and her family. The thought of dying in hospice, suffering daily seizures and receiving high levels of pain medication was not how she wanted to live out her life. This is not how she wanted to be remembered.

Brittany wanted to be in control of her own death. She moved to Oregon, one of five states that allow for death with dignity. Brittany would receive a prescription that would end her life and be given the power to administer it when she felt it was time.

Brittany became a spokesperson for death with dignity after she posted a video on youtube explaining her choice. It has received over 10,000,000 views.

https://www.youtube.com/watch?v=yPfe3rCcUeQ

On Sunday, surrounded by friends and family, Brittany decided that it was time to end her struggle.

Compassion & Choices, an end-of-life choice advocacy group who had worked closely with Brittany, said she "died as she intended -- peacefully in her bedroom, in the arms of her loved ones."

Having been raised a Catholic, I have always looked upon suicide as a sin. Now that I have cancer and with an understanding of how I will likely die, I have to say that I have to wonder if I have been too closed minded. As would have been Brittany’s, my own death will not be pleasant. Multiple myeloma, when no longer under control, destroys the bones. It starts with the larger bones and moves to the smaller ones. Bones become brittle and eventually break. In my own case, I had 29 areas that had been affected including a tennis ball sized tumor on my pelvis. My kidneys were shutting down and potassium and sodium were flooding my blood stream. I was lucky that chemotherapy saved my life.

I have seen both of my parents die of cancer. It was horrible. I cannot believe that this is what God wants. We have the technology to keep people alive long after they should. Sometimes past the point of cruelty. It is not my plan to end my life when it becomes hopeless, but I can certainly understand why someone would. Is it really suicide when you are already dying?

On the other side of the country, in Cincinnati, Ohio, Lauren Hill was having the best day of her life.  Lauren, too, is dying of brain cancer. There is a good chance she may not see Christmas. But Sunday, she didn’t think about that. She woke up at four in the morning with a terrific headache. It was so severe that later that day she would have to wear sunglasses and headphones to drown out the light and sound. That would not keep her away from completing a dream, the dream of playing college basketball.

It was just a little over a year ago that Lauren announced on her birthday that she would attend Mount St. Joseph’s University and play basketball. Less than two months later she found out she had brain cancer. In September, she was told that she had months to live.

The University then petitioned the NCAA to be able to play their game against Hiram College two weeks earlier than had been scheduled so Lauren could fulfill her dream. The game was moved to Cincinnati so her friends could attend. Forty five minutes after the tickets became available, Cintas Center and its 10,500 seats was sold out. This was for two teams that normally would have 100 family members and friends show up for a game.

Hiram College and its coaches and athletic department were completely on board even working with the Mount St. Joes coaches to allow Lauren to score on the first possession of the game. A backdoor screen was run for Lauren so that she could move to her right which would allow her to shoot with her left hand. Although right handed, she has been forced to shoot with her left hand as the cancer has begun to disrupt her body movements. After scoring, time was called and everyone in the arena celebrated including the Hiram coaches and players. 

Lauren has made it a point to bring attention to the plight of those with pediatric cancers. Tens of thousands of dollars have been raised for this cause. Lauren has issued a challenge to Lebron James and others in her own version of the ALS Ice Bucket Challenge.

http://www.youtube.com/watch?v=PF023AEUOtk

Fox Sports Ohio televised the game and it was streamed nationwide on the internet. After the game an emotional Lauren summed up what many were thinking, "To reach and touch this many people is amazing. Not many people knew about DIPG before me, and now that they do, we can get research going to cure this cancer. I won't be around to see that, but it's going to help so many people. That's why the support can't end with this game."

Both of these women have touched millions in their own way. Hopefully, we will see increases in cancer research so that we can experience an end to this killer in our lifetimes.

In my own little world things are going well. I continue to receive good results with my blood tests. I have been in remission without the help of chemo for 16 months. I never thought I would be able to say that. Now the goal is to see just how far I can take it.  The Leukemia and Lymphoma Society Light the Night Walk is this Friday. If you haven’t had an opportunity to donate, please do. It will be my sixth walk. I hope to be doing this years from now.

http://pages.lightthenight.org/az/Phoenix14/TeamOutlaws

September 3, 2014 - Twenty-One

Is was twenty one years ago today that Jason came into our lives. Jason was the quiet one even before he was born. He was very restful before he breathed his first breath unlike his maniac brother.  Justin was always moving, often reminding us of the creature in the movie “Alien.” It wouldn’t be a surprise to see a foot or a hand trying to push its way our of Julia’s stomach. Jason, on the other hand, was content to just relax in the warmth that the womb provided.

Their personalities didn’t change a great deal after they were born.  Justin was always moving, refusing to sleep. He walked at seven months and would climb anything that wasn’t moving. Jason also walked at a fairly early age (nine months) but he did it in a more cautious manner. Justin would fly across the room, invariably smashing his face into something while Jason was steady and calculating in his movements.

When Justin would jump onto our bed, he would immediately stand up and analyze his chances of death if he jumped off, then dive.  Jason was fine getting up there, but would more likely take his time getting down not risking life and limb like his brother.  There was never a minute that Justin was clean. It seemed the second we put his clothes on him, they were filthy.  Jason was just the opposite. There were times that he would get a little water on his shirt before going to school and he would have to change it to stay perfect.

Justin was well known in the neighborhood for his antics with his toy cars.  If they lasted three months without some type of cataclysmic accident, it was only because he forgot about it. You have no idea how many die cast cars I found in the back yard that looked like they had found the business side of a sledge hammer. Jason would line his cars up in straight lines just to make sure they all looked good.

When Jason was two years old, he had a vocabulary of five wolds, highlighted with the usage of the word, “no.” Justin would talk your ear off at two which is probably why Jason didn’t have to talk much when he turned two. He had Justin to interpret his grunts and as a result didn’t need to talk. We were so concerned that we took him to a speech and hearing clinic to see if he had hearing loss. Instead, we were told that he had an excellent vocabulary and was just too stubborn to talk. For years this has been an area of discussion between Julia and myself as to whom he got that from.

When each of the boys turned three, we took them for formal portraits in keeping with the tradition started by Julia’s family, taking each of the children on their third birthday to get their picture taken.  Justin practically ran the photographer out of film. He loved being in front of the camera, often posing himself without a hint. Jason had to be coaxed to even smile for the camera. The day could not have been over quickly enough.

It has now been 18 years since that third birthday. Each of the boys have changed in their own way. Justin became the fashion plate with gym shoes matching the color of his shirt and Jason became the kid that you would only see in gym shorts, a baseball tournament tee shirt and one pair of Nikes all in white and black.  But, I guess we all change at our own pace. There is no one template that we follow.

When Jason went away to school we began to see him change.  Although he went to South Dakota to play football, it was probably an injury the first week of spring practice that began the change. It seems Jason learned more outside the classroom than he necessarily did inside. When he returned and made the decision to not return we began to see subtle changes in our quiet son.

Instead of tying all of his friends to the particular sport he was playing he started to branch out. He still had friends from high school football, but he started to make friends at the gym and at church. When he started a job as a student ambassador at his college he added his fellow workers to the mix. But the biggest change came in his interactions with other people. Being forced to be on stage with others during student orientations, he became less reserved and more outgoing.

He then decided to expand his gym workouts to enter a Physique competition. This forced him to go on stage in front of 1,000 people wearing just a pair of shorts.  If that doesn’t force you to break out of a shell, I don’t know what would. Then given an opportunity to begin an internship where I work, he had the opportunity to speak with hundreds of our associates before our biggest event of the year. At that event, he was a spokesperson for our IsaBody Challenge speaking to many of the 10,000 people in attendance.

Now at 21, the boy we thought might have a hearing problem, has grown into a man that will likely make his living talking to people about nutrition. It is amazing how we change in life and what molds those changes. I cannot say how proud we are of both of our boys as they have become their own people. Jason might actually be happy to get his picture taken now.

It has been a while since I have written as I have just enjoyed my renewed good health.  I have been off of chemo for over a year now and my most recent test all came back with good results.  As I have often said, you should use every moment of your life to enjoy the gifts we have been given. I feel like I have been given additional years that I fully intend to take advantage of. I might even find time to write now and then.

January 22, 2014 — Time

Time is a funny thing. We live our lives knowing that there is only so much time that is allocated to us, yet we either waste or wish away significant portions of that allocation. The amount of time that I have wasted just waiting for something to happen is ridiculous.  I don’t even want to think of how much time I have wasted sitting in a doctor’s office, or waiting for a red light to turn to green or for the pot of water on the stove to start to boil.  I dare not even try to calculate how much of my life has been wasted on sitting through commercials.

When we are young we think we have all the time in the world.  We also think it takes forever for things to be completed.  I’ll never forget sitting in my little wood desk while in elementary school watching the clock tick at an amazingly slow pace.  Waiting out those last two weeks before Christmas was excruciating.  Crossing out and marking down the numbers of days left until summer vacation on one of my notebooks could not have taken longer.

Things don’t change much as we grow up as we count down the number of hours left until 5 PM on Friday and we finally have our lives back.  For some reason a day at work takes a lot longer than a day of vacation. Time never seems to be on our side.

The thing that really jumps out at me when I take a look at my life is how far away the future seems, yet the past seems so close.  How many times have you tried to guess how long ago a celebrity died? I’m not sure how good you are at it, but I stink. I almost always think they died much closer to the present than they actually did. 

Not sure how many of you are “Gilligan’s Island” fans, but I always have followed the characters as they lived out the rest of their lives. I was always a fan of the “Professor” and when he died last week, I tried to remember how long ago Bob Denver died. I vaguely remembered that it was four or five years ago. It will be nine years in September. How long ago did Jim Backus (Thurston Howell, III) die? Would you be surprised to know that it will be 25 years in July? 

Completely off topic, but I preferred Mary Ann to Ginger.

I’ll never forget when Harold Kidwell, my boss from, oh-so-many-years-ago always talked about how you should double the time that you think something happened when you are trying to pinpoint how long it has been.  I have found this to be pretty accurate when I really don’t know the specific year that something happened.

All of this brings me to the point that it has been five years that I found out that I had cancer.  I’ll never forget the call I received from my doctor stating that my kidneys were in failure and that I was at a high risk of a heart attack and that I had better get myself to the nearest Emergency Room as quickly as possible. It seems like it was yesterday. I still sit at the same desk with the same telephone at my side. It could have happen yesterday if I would believe the vividness of that memory.  Even with all I have gone through, I would never think it has been five years.

When I saw Dr. Mikhael last week to go over my test results, I had to ask him a question that has lingered with me for some time.  Because I am still in remission, I felt a little cocky and I asked him, “When you saw my original results five years ago, did you think I would see 2014?”  I really wasn’t sure what he would say. If you asked me that same question back then, I would have given a definite “No.”  From everything that I had read, I felt that I might have a couple good years left and the inevitable was bound to happen.  Don’t get me wrong, I was going to give it everything I had, but the disease had progressed pretty far and the average life span was 27 months for someone in my condition.

His answer surprised me at bit. He said he thought I had a good chance to make it to five years, but not a great chance.  Funny thing with cancer, you never know what is going to happen.  If there is a 95% chance you will not survive, that means that one out of 20 actually do survive. That is why you never give up. You may be that one out of 20.  He did say that I probably have a better chance of lasting another five years than I did to make the first five years. The miracles of cancer research continue to give all of us survivors hope for a future.  Even though that future may seem to take forever to get here, I’m looking forward to it.