Stories of Hope

Bob Lynch: Still Rowing On with WM!

Bob Lynch: Still Rowing On with WM!

The rowing goes on, and the singing is still strong here on the ROW BOB ROW TEAM in Sebastian, Florida.

In August of this year, I will be celebrating my 75th birthday with a row to a local pub.  Upon diagnosis of Waldenstrom Macroglobulinemia (WM), I hoped to make it to 50.  The lesson: Never think small!

The last five years have been eventful.  My wife Sue underwent chemotherapy after her kidney cancer returned.  We had planned to move to Jacksonville, Florida, at the time so that I could participate in a Mayo Clinic trial.  However, Sue and I made a joint decision to stay in Sebastian, figuring we would be happier receiving our treatments in a familiar setting.

The universe seems to always put us in the right place with the right people. I continue to row, sing, ride my recumbent trike, and swim as my body and mind allow.  Sue pounds the tennis ball three to five times per week.

We have a wonderful support team of friends who keep a close eye on us.  The pandemic did not slow us down too much, as we’re used to being cautious in public settings.  Most of our activities are outside, and we make sure to sit upwind when we dine out.  All of those years living on a boat—keeping the fresh air coming and the germs going down wind—helped prepare us for the pandemic.

We were lucky enough to have an RV for the last five years, giving us a reprieve from the hot Florida summers.  Our most rewarding experience with the RV was volunteering at parks.  For instance, we operated a little store 20 hours per week from a great site near the top of a mountain at Virginia’s Sherando Park.  The local folks became like family, but our trip was shortened from four months to two months because of the pandemic.

We sold the RV, but Sue still volunteers enough for both of us.

Over the 26 years since my WM diagnosis, Sue and I have shared our story with many people. We’ve raised money for research and spoken with anyone who wants to listen, including presentations to business, church, and cancer groups.  I particularly enjoy that, after each presentation, someone will tell me that they would never have believed a story about cancer could create both tears and laughter.

Now, onto some questions that keep popping up.  My boat’s name is Quiet Mind.  My goal is to row 1,200 miles per year—or 100 miles per month, 25 miles per week, and 5 miles per day.  Those miles pass by tremendously when training for a long distance row (i.e. Key West to Miami). I have accumulated about 48,000 miles of rowing over 40 years.

People also ask if I can still function without a cell phone, and the answer is a resounding YES!

Now onto the medical side of things.  Here is the 5-year summary of my treatment:

  • February 2017: Tolerating Ibrutinib without any problems.
  • November 2019: Remain on 420 mg of Ibrutinib daily.
  • June 2020: Replaced Ibrutinib with 200 mg of Venetoclax per day.
  • June 2021: Cannot increase Venetoclax dosage as a result of myelosuppression.
  • August 2021: Tried first cycle of Cytoxan, Rituxan and Prednisone.
  • September 2021: Prescribed Rituximab, Cytoxan and Prednisone for 3 cycles. I remain transfusion dependent since the start of the treatment.
  • October 2021: On supportive care after not responding to Rituximab, Cytoxan and Prednisone. Continue to row. (I like terms like “supportive care.” Makes me feel like am back in college).
  • January 2022: Started Everolimus.
  • February 2022: Started taking 150 mg of Zydelig twice daily. Still supported with blood transfusions. Plan to continue 150 mg of Zydelig and start Gazyva and Bactrim in the coming days.  Overall prognosis is guarded. (Side note: I only have one word for my new chemo treatment: WOW!)

Peace and blessings to each of you.  Someday, WM will be in our rearview mirror, and we will all gather to share our stories.

Bob Lynch
Sebastian, FL
April 2022

 

 

Bob’s Original Story from 2017

It was June of 1995. I was about to have a very special week. What I thought was going to be special was that on this particular Monday, my wife Sue was flying to Tallahassee, Florida, to defend her doctoral dissertation at Florida State University. She would be on this quest until Friday, and then hopefully celebrating success for days and weeks to come.

After dropping Sue at the airport I stopped at a friend’s office for a morning coffee. This friend was also my primary care physician. He mentioned that he had time to give me my annual physical, which wasn’t due for two months. But since I was already there, I thought, why not? Tuesday, he called me at my office to say he suspected there had been an error in the blood work, and could I come over so he could obtain another blood draw? No problem, mistakes happen. Wednesday, I received another call saying there was nothing to worry about, but he wanted me to see another doctor friend of his to verify something weird in my blood results. All I had to do was head over to his office – they were expecting me. One hour later I was checked in and searching the bookshelves for a boating magazine. It was then I realized all the reading material had to do with types of cancer. Five hours and many tests later – including my first bone marrow biopsy – I left knowing I had a new best friend – Dr. Troner.

On Thursday, Dr. Troner called and asked if he could present my case to a panel of doctors that was meeting at Baptist South Hospital that evening. My response was, “I have a case?” On Friday morning, Dr. Troner called and asked me to stop by at lunch. No problem, since I had to pick up Sue at 2 p.m. that day. His news was that I had a rare form of cancer called Waldenstrom’s macroglobulinemia. He told me that there was no cure and I needed to start chemotherapy the following Monday. The good news was that it was not fast-moving, and therefore I could expect to live for another three to maybe seven years. At this point it is important to note that while I was shocked to be told this news, I was much more concerned about how I would share it with Sue after she gets off the plane with serious celebration on her mind. To find out how I did that – and to learn a lot more about how Waldenstrom’s has influenced my life since being diagnosed – please take a look at my video.

Sue and I had been married for 24 years at this seminal point of diagnosis, and, like most people, we had had many highs and lows in our life together. We spent that entire evening on our patio, which overlooked Biscayne Bay and downtown Miami. We laughed and cried and drank way too much rum and wine. At the end of the night we asked ourselves, “what good can possibly come out of this?” We made a conscious decision in that moment to LET GO AND LET GOD HANDLE THIS.

Monday morning, Sue got to meet Dr. Toner and I started my first round of chemotherapy. I was told the treatment would require only six months; but that turned into twelve months, and eventually eighteen months. I continued to work as a Florida Unemployment Judge the entire time, missing only a few days of work. However, eighteen months was enough, and Dr. Troner and I talked about my mental, physical and spiritual health. I needed a break. Within two weeks of stopping treatment I came down with shingles. The good news about this was it made chemo look like a cake walk. I wrote myself a ninety-day medical leave to try to regroup and regain some strength.

Two months into my rehab from shingles, I knew I was still really weak but I could not sit around any longer. My favorite sport is sliding-seat rowing, and so I convinced Sue this would be the best medicine yet. She arranged for my boat to be at the dock, and with her help I was soon taking my first few strokes in almost two years. I didn’t go far, but I was on the water. Every day from that day forward I rowed a little further, until I was spending hours on the water rowing all around Biscayne Bay in a small boat we christened “ATTITUDE”. Eventually, the question came up – WHAT GOOD CAN COME FROM All THIS ROWING? Through divine intervention an answer came to us under the rubric, “ROWBOBROW“.

At that time, IWMF consisted of about only 100 people, and Arnie Smokler – a driving force in the establishment of IWMF – became part of the Lynch family. We spent many hours trying to figure out how to raise money to combat this disease, which only a few people outside of the medical field even could pronounce. An idea was born that I would row my boat from one point to another and ask people to donate by the mile. The first row was from Key West to Miami FL, and covered 150 miles. It took ten days, and we raised $30,000 dollars. Arnie was at the finish line and was the first to ask, “Where are you going to row next?”

Well, over the years we have made four major rows and raised a lot of money, not only for IWMF but also for the Bing Center at the Dana-Farber Cancer Institute in Boston. Dr. Steve Treon of Dana-Farber is also a family member of ROWBOBROW. Although additional treatment requirements often intervened and limited the frequency of rowing events, it was always the case that we had “another row” in the back of our minds. The universe even provided us with the friendship of a cinematographer who created a wonderful documentary called “ROWBOBROW, CURING CANCER ONE STROKE AT A TIME”. Cork Friedman, the film-maker, also is not afraid to put his time and effort into actually rowing these adventures with me. Between him and Sue they have continually reinforced my commitment to doing “one more row.”

Last June we celebrated 21 years since we received that initial grim prognosis. Thank you God! So many good things have come out of this experience with WM. While I would not wish it on anyone, I also would not change a thing. I am currently on Ibrutinib (add that to Fludarabine, 2CDA, Bendamustine, Rituxan, Velcade, Chlorambucil and Cytoxan), and thinking about planning another row, which we intend to call “ROWING OLD GRACEFULLY 70 MILES FOR 70 YEARS.” It will be to support WM Research being funded by the IWMF.

One thing has not changed in the last 21 years – that is, if we, the WM community, don’t donate to fund research, no one else will. We will keep you informed on when and where this next rowing event will happen. Until then, get to know us a little better by watching us on YouTube, at ROWBOBROW.

Bob Lynch
Sebastian, Florida
January 2017I