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In October 2006, I asked my neighbor, a general practitioner, if he could check my cholesterol. It had been a year or two since the last test. He said “Sure, come on by the office”. A few days later, I went by there and had the blood work done. He came over that evening and asked if I had been sick lately. I told him no. He gave me a round of antibiotics to take and said I should get the blood work done again, after finishing the antibiotics. So, I did.
He came over that evening, with the results of the second blood test and said, Ryan, I think you have leukemia. I was shocked. I said Mike you have to be kidding me, and voiced my surprise with some not so nice language.
My life changed forever at that moment. But I did not feel sick at all. I was 48 years old. I was running and going. I was part owner of a business and very much involved in the day-to-day operation, and loved it. Now what was I going to do?
My doctor referred me to an oncologist, and a few days later my diagnosis was confirmed by a bone marrow biopsy. I had Chronic Lymphocytic Leukemia. Wow, what a change in the events of life.
My first reaction to this was disbelief, surely this is a mistake. I can’t have cancer. But it was no mistake.
Then I felt sorry for myself and started to blame and doubt myself. I asked “What did I do wrong”? But I had done nothing wrong.
Next was me simply being mad at the world and the hand I had been dealt. What did I do to deserve this? Then I asked myself, what is different about me and the six plus billion people on this earth? The answer to that question is that we are all the same.
Finally, acceptance and with this came some peace. With acceptance, I could now go forward in figuring out how to fix this problem. I have never considered anything but success in my goal of beating and surviving CLL. This is how I operated in business and other areas of life. Sure, I knew there were risks in both the CLL and starting a business. I did everything I could to mitigate those risks. But I never considered failure at business or with CLL an option. To me, having this positive belief and attitude has helped me along the way, both in business and with CLL.
I was not by myself in this journey. My wife, Susan, has been with me every step of the way. This has made the journey easier. I strongly recommend you have a care giver, if for no other reason than having another set of ears during doctor visits. Quite often, you as the patient, don’t hear everything the doctor says. It is important you have a very clear understanding of each doctor visit. I was lucky in that our son was in med school in Houston at the time, and was able to go with us to the doctor visits. He was a tremendous help in explaining further what the doctor said. Our oldest daughter is a Physician Assistant, and she was able to help with some care I needed at home.
I received FCR beginning in early 2008 and it worked for almost two years, and then the white count starting going back up. I have to admit, this was a low time for me. I was scared, I cried, and wondered what would happen next. But still, I never stopped believing I was going to beat this. Failure is not an option at any time.
My next option was a stem cell transplant. So, I was given some high-power chemo to get ready for the SCT. I was given instructions to prepare for the SCT, and that included not having any pets. This was one of the hardest parts of the entire process. I had a beautiful, trained yellow Lab named Belle. I cried as I saw her big brown eyes looking at me through the window of my friend’s car as they drove her off to her new home.
We packed up and drove to Houston ready to stay 100 days. When we saw the doctor the next day, he told me I could not have the transplant, as my numbers were not right. I still had too many “bad” cells in me the chemo did not get. He told me I had 24 to 36 months to live. He told me to come back the next week and see my other doctor at MDA.
Next to losing Belle, this was by far my lowest point. I was frustrated because the available treatments were not working for me. But still, failure was not an option.
We went home and came back the following week, and this is when a new path appeared and I felt hope again. That very morning, a clinical trial for Ibrutinib was approved by MDA. My doctor told us about it and asked if I would consider the clinical trial and I said yes.
I was one of the first on this medicine, and it performed magically. It gave me that most precious of commodities, time, almost 5 years in fact.
In the fall of 2015, my CLL started to awaken again. I was able to get into a clinical trial for CAR-T for CLL. I was told there is a 50/50 chance this would work. I talked with my doctor at MDA and she said I should try it, so I did. We spent about 6 weeks in Philadelphia, in the spring of 2016. I called heads and it came up tails, so the CAR-T did not work for me then. We tried. It was worth the effort.
Now I’m back to the SCT. During the summer of 2016, I get ready for it, and the date is set for me to go into the hospital. My new birthday is September 29, 2016. I had a 10 out of 10 match. My donor is a female from Europe, so my BMA results show 100% female karyotype. This does not bother me in the least. And no, I don’t have the same powers as Mel Gibson had in the movie “What Women Want”.
I did make the mistake of telling some of my friends, who then offered to take me bra shopping. All in good fun.
When I went back for a 3-month check-up in late April, there was a little leukemia still in me. My doctor offered me a clinical trial to finish off the bad cells. This treatment had more negative side effects than all the others combined. From April 1st to July 4th I gained 50 pounds. It was hard to move around. I was scheduled to go back to Houston in late August, but that’s when Hurricane Harvey hit, so it was postponed a few days. On that trip, I had a bone marrow and PET scan. The following week, my doctor called and said there was no evidence of CLL on the scan. A few days later he called back and said the BMA did not show any CLL. They even tested it further and could not find one bad cell in a population of 600,000. I was in Deep Molecular Remission. As of August 2018, I still am.
This certainly has not been an easy journey. There were times when it was very easy to get down, to feel sorry for yourself. But then, all you need to do was to look around, and you will quickly see someone worse off than you.
My children were a big inspiration here. I wanted to see them get their education and get married. All three are out of school and working. I’ve been able to see two of the three get married, and last one will get married in December.
As an extra blessing, we had our first grandchild in January 2018. To hold her for the first time made all the emotional ups and downs, all the iv’s and shots I’ve received, and all the time and energy spent over the past 12 years, worth every minute. I will spoil her and hopefully other grand children as much as possible.
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 2018.