I am honored to be able to share another remarkably unique Survivor Story with you all. This one comes from Robert, a man living in Florida, who was hit with a double-whammy of bad news at age 61. Robert was diagnosed with a rare nasopharyngeal tumor blocking his hearing in one ear and, upon removal of this tumor, found out that he had Mantle Cell Lymphoma to fight as well. Wow.
After undergoing chemotherapy, several surgeries, and a stem cell transplant, Robert is thankfully doing great, staying healthy, and enjoying life down in Florida with his wife, whose love and support played a huge role in Robert’s fight and his ongoing recovery.
No matter how many of these posts I write, I can’t stress enough how important caretakers are to a survivor’s success! For all of you caretakers out there, you are loved and you are appreciated so, so much!!
Without further ado, I’m thrilled to share with you Robert’s story in his own words below. I hope you enjoy reading about his positive insights, his sense of humor through tough times, and his strong will as much as I did!
Take it away, Robert!
In about October of 2019 my son returned from Qingdao China where he and his family lived during the summers when public schools have their hiatus. His wife is a special education teacher and has been for the last seven or eight years. He started wearing a medical mask on his return to the US. He told us that a terrible sickness would arrive as people returned to the US from celebrating the Chinese New Year in February, and he was taking no chances.
About this time around the country, myself and other people were having coughs and other symptoms. Our doctor’s office mandated masks before COVID19 was even news. Whatever cold or flu my wife and I developed about this time is unknown to us.
My cough did not go away but dogged me for over a year. At one point, my employer even sent me to our onsite medical facility to make sure that it was not COVID19.
By November of 2020 the cough was still with me. In addition to that, something was blocking the hearing in my right ear – sort of like swimmer’s ear. I tried home remedies, went to Urgent Care, and was prescribed antibiotics. My primary care doctor told me to see my ENT (ear nose and throat) doctor. I did, and he thought it could be allergies or a cold and prescribed antibiotics.
By the second appointment, he said “let’s quit treating this as a cold and get a scan”. The scan revealed a rare tumor in my nasopharynx. On Thursday January 21st, 2021 I received a call directly from my ENT. The next morning, Friday, in his office he told me “if you were my father… have it removed Monday.” Having three sons that struck a very sentimental chord. On Monday January 25th, I was in emergency surgery to have the very rare nasopharyngeal tumor removed.
Within days I received the phone call that forever altered my life. When the nurse calls, you can pretty much tell that it’s good news. But when I heard the doctor’s voice I said “it’s not good news is it?” He said, “unfortunately no. The biopsy has revealed a B Cell Lymphoma. I am scheduling you to be in my office tomorrow.”
That next morning Dr. Jon Burton, my hero and lifesaving ENT, told me that he wanted me to be seen by Dr. Julio Chavez, who was not only a hematologist at Moffitt Cancer Center here in Tampa, FL but also had a local office near our home. Dr. Burton called ahead to ensure that I was seen by Dr. Chavez, one of the world’s leading hematologists.
We live in an area with a very large hospital and all of my medical offices are very close by. So thankfully, within days, I was able to have my scan very close to home. Tampa Bay has a very unique medical system. Information is shared almost instantaneously across medical records – which has saved so many lives, including my own mother in law’s.
On February 11th I had my first labs at Moffitt and an initial meeting with Dr. Chavez and his team. When I got home I looked at my Patient Portal and saw the words “Mantle Cell” in my bloodwork.
I looked up Mantle Cell on Google. All of Google’s information on rare cancers is outdated as I would learn later. Never Google your blood cancer, ever. The life expectancy according to that search engine was three to five years. I would later find out that in the last five years the life expectancy was much higher as treatments had advanced greatly.
I was hanging on to hope that Moffitt was looking to see if it was Mantle Cell and was not certain that I had it.
However, my next appointment with my nurse practitioner confirmed that I had Mantle Cell Lymphoma. I allowed myself about ten seconds of hands over my face self-pity and then immediately something strange happened. More like a burst of acceptance and then came the faith. The faith that God had put me in the finest medical hands, He had allowed a rare tumor to reveal this rare lymphoma and not major organ failure which my nurse practitioner told me was very close. I knew I was in the hands of the finest medical team at one of the top US cancer centers for rare blood cancers.
I had my first PET/CT scan and it revealed an enlarged spleen and that the cancer had invaded all of my major organs and lymph nodes which were by now huge. I entered this strange arena of joy and faith – I felt free. Happy is a strange word to use but I was happy. My youngest son, a former Marine, told me one thing about Afghanistan. To summarize, he said something along the lines of: Dad, two weeks in that country and I said to myself I could die. Once you realize you are fighting for your life, it puts everything else into perspective. you do not worry about car payments, money or anything. You really enjoy life. My son is my example of how to surrender life during cancer treatments.
I surrendered to Christ. The prayers of my Church and my family have been overwhelming. I immediately found three unique Mantle Cell groups on Facebook and the encouragement through these groups has helped me through the darkest days, especially alone during my Stem Cell Transplant later.
It is hard to explain how difficult it was to place myself in the care of my wife and sons at home. I have always been self-sufficient. My insistence on doing things my way created some heated arguments. My middle son who is married and has a family bought me a beautiful movie recliner to accommodate my post chemo needs and being immunocompromised, which is normal in Mantle Cell treatment.
My wife has made sure that I stay out of crowds, away from my gardening hobby and strictly away from contact with chemicals. She has gone out of her way to make sure that I eat lamb, specific meats and have an organic diet. She has always worked remotely even before COVID19 – her employer has treated her and I with so much compassion.
My former employer, the local County Sheriff’s Office, I cannot say enough good about. Everyone from Employee Benefits, Risk Management, my Colonel (I was not a deputy but Hillsborough County Sheriff’s Office (HCSO) is very military oriented), my Director on down to Supervisor were all so good to me and so accommodating.
Moving on to my next piece of advice, never dread an operation or procedure, don’t google it, or look it up on Youtube. As they were preparing me for port placement in my chest, I was lying flat on the operating table and checking my eBay Store. I always for some reason picked the worst movies or shows the night before a procedure. Watching episodes of Shameless while I had an infected chemo port. Or Predator before I’d receive a spinal tap. It made for conversation and laughs with the operating staff. After my port placement I told the recovery nurse “I wanna’ go to The Island”. Thankfully she laughed, having seen the movie.
I retired from forty eight years of work, never jobless, on March 19th, 2021. By April I had my initial spinal fluid tap (if it enters your spine it may be in your brain, little can then be done). In April 2021 I had my chest port placed and began my chemotherapy.
I had a slight sweat during the first Rituxan (a type of chemotherapy) infusion. The nurse practitioner on duty informed me that I should have called him immediately. I explained that I thought sweating at odd times was normal. I found out that the cause was Mantle Cell.
Since that infusion I rarely sweat even when outside on the hottest days here in Central Florida. When I walk nature trails I actually have to remind myself to drink water. I thought night sweats and profuse sweating was normal.
The PET/CT scan after the initial infusion showed the cancer in vast retreat. After three rounds of Rituxan and three of the R-CHOP chemo by July 29th my scan showed complete remission.
I was scheduled for a Stem Cell Transplant in October 2021.
I had to have some very costly dental work done to ensure that no infection would come from my mouth while in the Blood and Marrow Transplant Ward at Moffitt. I was rescheduled and on November 29th 2021 I was admitted.
It is a pressure sealed ward. My wife settled me in. I asked her not to come to visit me during weekdays, because she was working. She still had to clock in and out from home. We are both older and I did not want her driving so many miles at night. She came on Saturdays, stayed all day, ate lunch with me and did my laundry. Only one family member or caretaker is given access to the BMT ward – no one else may visit.
By the fifth full day of a Stem Cell Transplant I had been through BEAM chemo. I had zero immunity, I faced fevers, and found out I had a topical infection that was believed to have come from a needle insertion. That is normal.
A Stem Cell Harvest begins the week before you go in – injections in your belly to force the stem cells for collection. I hated those shots worse than any procedure.
December 6, 2021 is my “rebirthday”. That was the day when my twelve bags of stem cells had been cleared to be replanted in my body via an Autologous Stem Cell Transplant.
BEAM chemo prior to the Transplant is one of the most difficult chemotherapies known. You are absolutely open to all infections – I could barely move for weeks. It was my nurses and techs at Moffitt who cheered me on and encouraged me. We talked and shared troubles and family stories. You are not allowed in another patient’s room. Transplantees are not allowed anywhere near each other but, like any place where people are sequestered, we had a way to communicate. We knew each other’s names by the door plaques. We would pass encouragement and cheers through our nurses and techs.
Oddly, I became close to my neighbor Jorge, a leukemia patient. His wife had put a “Happy Birthday” sign on my door with sparkles on my Transplant day. I thanked them with a hallway wave from afar. From that day on we passed concern through the staff. On my last day I had the nurse open the door so that I could say goodbye to Jorge.
My wife, my rock, accompanied me to ring the bell and take me home where my grandchildren waited to greet me. I am still not able to hug them and am still immunocompromised. No more crowds ever. No manure or major planting again ever. My wife, knowing my stubbornness, had the backyard trees cut down in my absence. I smile when I think about it. Attitude is everything with cancer. It is about acceptance and letting go. I physically felt the prayers going up on my behalf from my Church. They were like this bulwark behind me. If God has healed me time will tell. I trust Him. As I surrendered my life to Christ completely and commended my well-being to my family, I found a contentment I never knew possible.
Thank you so much, Robert, for sharing such a remarkable story. You and your exceptionally encouraging and supportive family have SO much to be proud of. Your positive attitude and unwavering faith can be an inspiration to us all.
And to anyone out there that would like to share your experience with cancer, how it has affected your life, and what messages you’d like to send out to others who may be going through similar experiences, please feel free to reach out to me! I would love to help you tell your story just like Robert did here, and like Connor did in the previous Survivor Story!
As always guys, I’m available through my contact page if you have any questions, tips of your own, topics you would like to see covered, or just feel like chatting to someone that’s been through it. I am always here for you.
-Alex
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Featured images on this post are straight from Robert himself!