Saturday, May 28, 2016

How are you doing?

This past week I was at a National Conference in Baltimore Maryland.  The conference happens once a year and draws thousands of professionals in the health and safety field.  Having been attending this conference for over two decades now, I have come to know a lot of people.  But many of these are people that I only see this one time of year.  

When you run into someone that you have not seen in a year or more, the first question that comes out is, "How are you doing?" I have never really thought about how I answer this question in the past. This year it was different. I considered a couple of options for responding: 1) lie ("I am doing great! How about you?"); 2) tell the truth ("I have chronic myelogenous leukemia."); or 3) obfuscate ("It just goes to show you, it's always something!"). 

I decided that I wanted to be honest but I did not want to sound like I was looking for sympathy. I felt that it was best for these once a year acquaintances to know what I was going through but that I was also expecting to beat this disease.  I was not expecting many of the people I met to fully understand the CML. Afterall, most that look at me would not see any outward evidence of my cancer battle.

To my surprise, it turned out that a number of people I ran into were also dealing with life altering events, from knee replacement surgery, stroke, and other forms of cancer. At one of the meetings that I attended, two other colleagues were battling forms of leukemia.  I suddenly felt like I had a support group that understood my situation and that it was now much easier for me to relate to their life situations as well.  Their stories of courage, tenacity, and survivorship gave me renewed energy to keep on fighting my battle.  

Honesty is the best policy - it just goes to show you! 

Tuesday, May 17, 2016

The Land of the Impatient

Yesterday morning, as I was traveling along my normal bike commuting route, a car zipped out of a side street just ahead of me.  I am not sure why the driver had to gun it out of the side street. Maybe he saw the northbound cyclist, that was me, and needed to get out fast to avoid any microseconds of delay this cyclist might cause in his daily commute. Unfortunately, while he was busy paying attention to the northbound cyclist, he evidently did not see the southbound runner with dog in tow.  He had to quickly swerve to avoid the runner and his dog.  Thankfully he did not hit either of them.

We are America, the land of the impatient. Lee Iacocca once famously stated that "you either, lead, follow, or get out of the way."  Today, it seems to me more like everybody thinks that they are destined to lead and if you are following the leader, no matter how closely, you better get out of the way too. Don't hesitate for a microsecond when the light has turned green; at least one impatient would-be leader will be on the horn faster than a viral YouTube video can travel around the globe. And pray for the poor driver who stops to allow a flock of geese to cross the road; the cacophony of horn blasting can be heard at least two counties over. Honking the horn seems to be a way of scolding you for not being as impatient, and therefore, not as leader-like, as the person behind you. Get out of the way, someone else is impatiently wanting to lead.

Being a bike commuter is all about being patient; but I had to learn patience when I first began biking to work.  I thought biking to work was all about speed and distance and turning every bike commute into a workout. Get there faster and don't let anything get in my way.  I found the automobiles that shared the road with me to be an annoyance and when one driver would give me a one finger salute, I fired back in kind. Today I laugh, wave nicely, and wish them a happy day.  I have learned to slow down, enjoy the ride, and to be patient with those that I share the road with.

But I am still impatient.  My impatience now is all about my leukemia and how I want to make it disappear now that I have the blockbuster drug, Imatinib, in my system. I can't wait to be back to normal.  I want my red and white blood cells to be normal, not next month or six months from today. I want it now! I want those Philadelphia chromosomes to get out of the way, today!  I want the extra twelve pounds I have gained removed from my midsection, now!  I want to wake up every day mentally alert and sharp, not drowsy and addle brained. I am not patient and if I had a horn to honk, it would be as loud as a fire engine siren!

But no amount of horn honking, wheel squealing, or engine gunning is going to make this cancer disappear overnight. Just as I learned to be patient as a bike commuter (which has also helped me as a driver, too), I must relearn patience and apply it to living with my CML.  I must remember that the chemotherapy medication is not an instant cure-all. I must take small steps and follow the signs that my body is giving me. The disease is not going to get out of the way, and will be ahead of me for the rest of my life. So I must accept that when the light turns green, I may not be able to instantaneously blast through the intersection of life - there may be a flock of geese or a person running with his dog in the way.  They can lead for now.  I am working on learning that I have time to be patient.

Saturday, May 7, 2016

True Grit

During my last visit to the hematologist to have my blood tested (I am still anemic but improving slowly), I heard a woman on a morning talk show that was on the TV in the waiting room. She was discussing her studies of successful people and her finding that it was not talent, or luck, or intelligence that made people successful. It was their "grit." I have since learned that the woman was Angela Duckworth and that she had grown up in a house where her father was a little critical of his children and his wife. Apparently, nothing was ever good enough and he would let his daughter know that by telling her, "You're no genius."

For many people, I believe that such discouragement might prompt them to just give up on a successful life and abandon their goals and ambitions. But Dr. Duckworth did not see her father's criticisms as discouraging. As she said in an interview with the Guardian, she developed an "I'll show you" attitude.  She developed the grit necessary to overcome the negative feedback that she received growing up. It was grit that helped her develop a passion to succeed and she is a professor of psychology at the University of Pennsylvania). Her grit inspired her to find out about what drives successful people. Her research has shown the those who are successful in life are so because of their grit - their passion and perseverance to succeed. She has published the results of her studies in a book called Grit, The Power of Passion and Perseverance. I am definitely adding this to my must read list.

Learning about my leukemia was perhaps the most discouraging moment in my life. For several weeks, the depression that would hit me, in conjunction with my PTSD (resulting from my experiences at the World Trade Center), might have been enough to cause me to just give up, feeling the struggle was not worth it. But hearing Dr. Duckworth talking about grit, while I was waiting for my medical appointment, made me realize that I carry the keys to successfully winning my battle with cancer. Several years ago, while biking across Utah, one of the riders commented on how well I climbed the mountains that we encountered given that I came from a relatively flat state. At the time, I told him that it was because I was stubborn. What it was really was my grit, my perseverance, my drive, to successfully climb these mountains - it was my, "I'll show you" moment.  

Now I need that grit in my battle with leukemia. There will be setbacks. There will be days when I feel the weight of this disease is unbearable. There will be days of small triumphs when I am able to get out of bed and get to work and still have the energy for a walk at lunch. And there will be days of big triumphs, when I can get up, hop on the bike, and ride to work - it is National Bike Month by the way.  Grit, not giving up, not letting the disease chart my course, will be the key to my success in the long run.   

Wednesday, April 13, 2016

Goals

Each year I set some goals for myself.  A first group of goals are often related to my health and wellness. Typical would be how many miles I want to cycle during the year, number of days I will exercise each week, trying some new type of exercise, and similar measurable milestones.  A second group of goals involves doing different activities or something I have rarely or never done, such as hiking or kayaking or trail running.  And then there are the goals related to places that I want to go visit, such as the Grand Tetons, the Redwood Forest, or the glaciers in Alaska.  As each year has passed, I am generally proud to say that I have met most of the goals I set for myself.

This year, things have changed.  My leukemia has forced me to reevaluate my goals and to take a less ambitious journey than the one that I would have anticipated. Among the goals I had considered this year was another self-supported bike tour and taking a multi-day hike perhaps along a part of the Appalachian trail or maybe even a hike up Mount Washington.   

My goals now must look inward:

Goal 1) getting my blood cell counts back to the normal range - Stage 1 remission; 
Goal 2) getting the Philadelphia chromosome (the one responsible for my leukemia) out of my blood - Stage 2 remission; 
Goal 3)  stay as active as I can, but within the limits of what my body will allow. Days I would like to ride a bike, I may just have to go for a walk; perhaps just getting out of bed and moving around the house will be the best that I can do; and 
Goal 4) maintain a healthy weight; a greater challenge now than it has been in the recent past with the combination of reduced activity and a side effect of the chemotherapy medication; I have gained 12 pounds in just two months. I hope to have this excess weight off by the end of the summer. 

Goals must be flexible and achievable and I believe that I will be successful in meeting this year’s goals.  Because the ultimate goal now is to be a cancer survivor. No other goal is more important.

Wednesday, March 23, 2016

History Lesson

We need to empower law enforcement to patrol and secure Muslim neighborhoods before they become radicalized”  Ted Cruz - 22 March 2016

Many years ago, a king sought to control his people fearing they might rise up against him.  So he took away some of the people’s rights. And he sent the military into their neighborhoods to prevent them from carrying out terrorist acts.  But all he did was radicalize their leaders. Leaders with names like Samuel Adams, John Hancock, Thomas Jefferson, and George Washington.

Thursday, March 17, 2016

My Body at War

Activities that used to physically challenge my body now exhaust me.

Work tasks that I used to be able to complete relatively easily now take me twice as long as they used to take.

Sleep continues to be a more significant component of my day; 9 hours is now a minimum and 10 or more hours is the norm even on days when my physical activity levels are low.

Yet for anyone that sees me, I look fine and many people I work with have no clue that I have leukemia. I know that my body is at war with cancer. However, it is a war where the outward appearances are subtle at best. When I look in the mirror, I don’t see the face or body of someone fighting cancer. I am not gaunt or frail looking. I am not carrying an oxygen supply to help me breathe. I don’t need a cane or walker to get around. I still have hair on my head.  Imatinib, which is the generic form of Gleevac, the chemotherapy drug that I am taking, seems to have minimal outward side effects, weight gain being perhaps the most obvious and concerning to me at the moment.

Inwardly, however, is a different story.  I am now facing the not so evident effects of anemia that has been created as a result of this chemotherapy medication fighting to get my blood cell counts back in balance. This is part of the hematological response which is the first stage of remission.  Risks of infection are higher at this stage and fatigue and exhaustion are very high; I was in bed for nearly 12 hours last night.  I know that my chemotherapy medication is working on removing the abnormal Philadelphia chromosome, which is the reason I have leukemia. This is the next stage of remission, also known as the cytogenetic response and the key to my successfully surviving this cancer.

While I look normal on the outside, and can do some normal things like anybody else, there is still a war occuring where I am a not so obvious casualty. I have to remind myself of that each morning when I wake, and each evening before I go to sleep.  So all that I can do is hunker down and wait for my body’s natural regulatory system to bring me back to normal; I will eventually heal and get better but days like today make it seems like a very long march to reach that ultimate victory.  

Sunday, February 21, 2016

Biking with CML

In January, I was diagnosed with chronic myelogenous leukemia or CML. It is a rare form of leukemia that is caused by an abnormal chromosome called the Philadelphia chromosome. My bone marrow is over producing white blood cells, including various immature cells, which build up in the marrow and the blood. Other than being more fatigued than normal, (and after biking over 5,400 miles in 2015 I should not have been surprised being a little bit more fatigued than usual)  I really have no other symptoms. I might have gone months or even years before more severe symptoms would have been noted and at that point the disease could have progressed to a more serious state.  

Fortunately, I have been going for annual physicals and getting screenings done regularly. A round of blood work done in early September was the first time I had ever had elevated white blood cell counts.  Naturally, the first thought the doctor had was that I was just fighting an infection. But after three subsequent rounds of blood work which all came back with elevated white blood cell counts, and evidence of the immature cells as well, I went to see a hematologist.  After donating more blood, enough to keep Dracula alive for at least another century, it was confirmed. I have CML - I have cancer.  A bone marrow biopsy confirmed my CML was in what is called the chronic stage - the earliest stage - so my prognosis is good. Twenty years ago, that was not the case. People diagnosed with CML had a life expectancy of 3-5 years and less than 20% would have lived past 5 years. Today, more than 85% of people diagnosed survive beyond 5 years and the majority generally go on to live a normal lifespan.

The reason for the success of treatment is because of an oral chemotherapy drug called Gleevac, or the generic form called Imatinib - I really want to know how you get the job of naming drugs; it must require quite an imagination. The drug was approved by the FDA around 2001 and is considered a blockbuster drug; in other words it costs a crap ton of money. I finally started on my drug regimen, after a drawn out battle with the insurance company, last week; I don’t know how long it will take to start seeing results but I am optimistic for a positive outcome.

Still, this is something that I now must live with as this disease is not curable; it is treatable, which means I will be on some form of medication for the rest of my life. And there are no guarantees.  So, I am starting a new normal which may change some things about my life and how I live it. I have a long journey ahead and how that journey veers from the one I thought I would be on is to be discovered.  It is still a journey to be experienced, nonetheless, and that is what really matters.