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Life is a constant series of changes and choices. Some we get to make, and others are given to us without regard to our personal feelings. Think back over some of the choices you have made. Some were great, some just good, others perhaps mediocre and some not so good. For most, hopefully, the good outweigh the bad.
Let us not forget, as I was told many years ago: “The sooner one realizes life is not fair, the better one will be.” There is no human judge to decide what is fair and not fair.
We may look at others and see those that have made a higher percentage of good decisions and see results of their success in the form of nice cars and big houses. We may look at those with a lower percentage of good decisions and see someone struggling to get by.
Often the perception we have of both groups of people isn’t always 100% accurate. For those of us with serious illness, we may look at them somewhat differently.
After my diagnosis of CLL in October 2006, the plans for my life needed some tweaking. Just as we have no control over where we were born, we have no control over being picked to develop CLL.
We simply do not know the time when treatment will be needed, so enter the “watch and wait” phase. I’m not sure I fully understand the term “watch and wait.” It’s not like you are sitting at home watching the game and waiting on the pizza to be delivered. You are active in getting blood work done, weekly, bi-weekly or monthly. Then waiting for the CAT or PET scans, and let’s not forget the always popular bone marrow procedures.
The initial “watch and wait” ended for me once treatment started in January 2008. My plans needed more than just tweaking. There were adjustments to be made. This included big and smaller steps. Mostly I was given of list of what I could not do.
Initially, I tended to focus on the negative side of the choices. There were a lot more “here’s what you can’t do” than “here’s what you can do.” Be careful around crowds, wash your hands, don’t eat from a buffet, (i.e. no Chinese), come let us stick you once a week to see what is going on and maybe give you some gamma and platelets, and the list goes on. If you are afraid of needles and have a blood cancer, you are just going to have to get over it.
After 6 months of FCR chemoimmunotherapy, I entered “watch and wait” again, and all the fun that brings: more blood test and scans, and yes, the bone marrow aspirations. I’m pretty sure I’ve had at least 25 BMAs, but who’s counting.
Since 2006, I have been treated at MD Anderson in Houston, which is 350 miles from where I live in Monroe, Louisiana. I have no idea how many trips have been to Houston, but it must be well over 150 times. Sometimes every week, sometimes every two weeks and often every month or 3 months. There were a lot of days away from home, so I missed a lot by being in Houston: events with the kids, friends and family, and lastly, work opportunities. The trade out in making those trips is that the doctors and staff at MD Anderson saved my life. It was worth every mile driven or flown. Something taken away and something gained. Sounds a lot like our life every day.
One side effect I have been given is neuropathy, primarily in my feet. For those of us who said years ago we would never wear those crazy, completely out of style, maybe even with Velcro straps shoes our parents and grandparents are wearing, better get ready. Comfort is more important than style at some point.
While many physical assets and activities have been reduced or completely taken from us, there are assets that are given to us. These may not be physical properties. I met amazing people along the way, and 98% are positive about their situation. One, in particular, has stuck with me.
In Houston for appointments, the last visit was with my stem cell transplant doctor, whom I highly respect. He prescribed photopheresis to help with GVHD (graft vs host disease), requiring multiple trips to Houston. This is not a pill you take every day. His words were “treatment is cumbersome.” This was the understatement of the year. While accepting what was needed to do, I still felt as if another burden had been laid upon my back. How much more do I have to take?
Leaving his office, I had a “pity party” until I got into the car for the airport. (Thank you, Houston Ground Angels, for the help). In the car I met “Joe,” and we exchanged a few words. Then he told me he had liver cancer, and it was not good.
My “pity party” was over. I was quickly brought back into the realities of life and where we were physically located.
His very presence and short conversation taught me the lesson I needed so much to learn that day. He does not know he changed me, but I do.
The timing of this conversation was exactly when I needed it.
Often, it’s asked why did we get CLL or other serious disease? Truthfully, I can’t say.
I’ve said before, I hope someone is helped by the fact I have CLL.
For me, I see life differently now. And that is a good thing. I continue trying to write the words describing this change, to share with others, without their paying the price of a serious illness.
I try to take each day and see its beauty. I have a Japanese Red Maple tree outside my office at home. It’s wonderful to see how it changes during the seasons. It goes from bare limbs to the first signs of buds, to a leaf and then turns a beautiful reddish-purple, with a paleness of green color. The beginnings of the seeds form, showing us that Nature is always preparing for the next season and generation of the species.
I have become closer to my wife. During this time, she has been there for me every day. Not being one to ask for help, I try to do things on my own. Not because I can do them better, but rather I simply do not want to inconvenience others because of my illness. What I have learned is that people want to help, and doing so provides them a degree of satisfaction. This is something my friends have taught me.
My children and grandchildren inspire me to keep going. Plus, they tell me to spend their inheritance. I’ll take them up on their request. What is the gas mileage on a Porsche?
My work is not full time, but it is geared to helping others who are on my pathway. I’d like to return all that has been provided me in terms of friendship, a special email received, a quick phone call with a cheerful, caring voice on the other end, and the many prayers.
While I would not wish my illness on anyone, I have experienced many positives. Certainly, one positive is that I’m still here to spend my kid’s inheritance. Are these positives worth the price I have paid? Not in terms of money, but all the other aspects: missing special family events, all the tests, treatments and side effects along with continuing to live with the unknowns of a serious illness?
I’ll let you know in 20 years.
Ryan Chappell, May 2019
From Monroe, LA, Ryan has invested his skills over the last 35 plus years in various positions in the packaging industry, both domestically and internationally. His service areas include paper board sales to plastic tank production, flexible packaging sales and corrugated box production and sales.
He has an under graduate degree in Accounting and a Master’s in Business Administration from the University of Louisiana Monroe.
He has served on the AICC Board of Directors both as Regional Director and Chairman of the Linerboard Sheet Supply committee. He is currently serving on the Board of Directors of Pilots for Patients, a non- profit organization, which helps people who are ill reach their medical appointments. And since 1998, he continues to serve as Chairman of the Ouachita Parish Fire Department Civil Service Board.
He has helped with multiple business start-ups both as consultant or equity owner. All but one continues operations today or have been sold to larger companies. As Managing Director of Business Connections (https://www.bizconnectinc.com/), he facilitates relationships between suppliers and vendors to achieve mutual success and provides business consulting services.
He has been published in newspapers, Box Score and The Journal of Accountancy.
Originally published in The CLL Tribune Q3 2019.