Beth, Follicular Lymphoma Care Partner
Beth, Follicular Lymphoma Care Partner
Our oncologist Dr. J. called Bill yesterday around 4:30 pm, the Thursday of our Labor Day weekend, with the results of his latest biopsy. And for the first time in almost a year, a year that touched all four seasons with tests, lessons and knowledge that we wished we didn’t have to learn, we heard really good news:
“No cancer. You are in remission.” No need to have that massive radiation dose you were scheduled for. Cancelled.
These words that we’ve waited for since what feels like forever hit like a blissful dream you don’t want to wake up from. I say and feel the “we” word as we are and have always been since we married one stronger and happier person made up of two distinct individuals. This last year we’ve been one person in two newly distinct parts: part one, the patient who must walk this tough journey finding his own way, and part two: the loving caregiver who can’t imagine life without her partner and would do anything to keep him healthy. In actuality, he is more like my 7/8ths, way more than my other half. He is what and who I live for, like the song refrain, “I only want to be with you”.
Add to that the fabulous three sons we share (and now a daughter-in-law) alongside some great family members and friends, and you’ve got the recipe for the best life on Earth — until something like cancer shakes your world. And it did.
My young, strong, healthy cyclist of a husband was diagnosed with a type of non-Hodgkin lymphoma known as follicular lymphoma, grade 3B almost a year ago out of nowhere and we’ve lived under a cloud of fear, anxiety, hope, disappointment, and so many emotions since November 2023. We’ve worked hard to stay positive and afloat through all the peaks and troughs.
Bill has endured 6 rounds of R-CHOP chemotherapy, a bridge of radiation therapy and a fairly new immunotherapy called CAR T-cell therapy that uses your own T-cells that have been genetically modified to kill B cells that express an antigen called CD-19 that is present in cancerous cells. CAR T required that a PICC line be inserted in Bill’s arm and that he undergo a scary process called leukapheresis, where your blood passes through a machine that takes out the T-cells and returns all the other blood cells and plasma back into the bloodstream.
We missed our winter away in warm Florida and our summer at our Lake George home, but more than anything, we missed a sense of normalcy. We’ve been surrounded by our amazing children, family members, and close friends. We’ve searched for peace and humor each day among all the daily hospital visits, the poking and prodding, and the tests and intravenous poisons that Bill had to endure.
We’ve walked this journey day by day, never apart, but unable to plan for a future, unable to get the cancer fear out of our heads. It sat squarely on our shoulders day and night.
We’ve been strong for each other outside while often weak and fragile inside, we’ve made the best of a bad situation, and we’ve had many dark sleepless nights full of terror, pondering the worst possible scenarios.
At Mass General Hospital right up the road, we felt the most normal. Everyone there is going through the same thing and the nurses and doctors treat us as with the care and compassion we need. We are normal in a hospital setting and abnormal in most social situations. At MGH, we are not pretending to be alright – we are just on the road to the cure, step by step, one warm blanket at a time.
Throughout the year I knew I was changing, in some ways for the good, some not for good. My brain was evolving with all that neuroplasticity I’ve talked about as a yoga teacher. My healthy habits formed fast: daily yoga, meditation, aromatherapy. I even added swimming in the summer at a local pool I could walk to. I’d hit tennis balls against the wall inside our condo garage and get on my Peloton bike whenever I could. I needed to take care of myself, and I needed to find something good to feel every day.
During the thirty days of CAR T therapy, Bill could not be left alone due to potentially serious though reversible side effects. For this, I recruited Bill’s brother and our kids to live here with us in turns, the first time I ever asked for help. They happily stepped up, equally worried about their dad and little brother. Turns out that thankfully with a small amount of cancer to go after, Bill got none of those scary side effects we had to prepare for.
Bill worked hard deep inside to keep his sanity. When he felt good he saw his trainer, got messages, and did some real estate development work. Fatigue became part of his lexicon, mixed with the word nausea, two words I never heard him say in 35 years. We walked together daily, happy to have a path by the ocean each day. His super strength was no surprise to me, nor mine with equal force.
We were never both down at the same time, except when bad news came, which it did. And on a few occasions, like when we got good news that halfway through chemo that almost all the cancer was gone, we were both so up that we took a mini vacation between rounds of chemo, and another when chemo was done before the PET scan showed we were not done yet. Percentages mean nothing when you are not on the winning side of that equation.
Relationships with family and friends were made as clear as the morning sunrise, which I caught almost every day from my eastern-facing Boston Harbor view.
We both thanked our lucky stars that the view we chose 4 years ago of a boat-filled ocean provided the best scenery to take in during all four seasons of therapies and recoveries. We appreciated our financial security, our loving family, and mostly that we had each other. But we also were scared, angry, and hopeful all at the same time, bouncing back and forth emotionally.
What will it feel like today, the day after, walking around with a real, not forced, smile on our faces, lifted into a new normal that was once just normal?
I equate the feelings I have now with those held captive, finally set free while mentally remaining in part still in the tunnels of anxiety. PTSD is real. It will take time to adapt, to lose the fear and enjoy dreams that are pleasant again.
From this constant adapting will certainly come a new sense of awe and wonder in each sunrise and sunset. Life is not to be taken for granted, as it can be stolen from you at any time. We now know this to be the truth. Planning our future, a trip to see our kids or to visit Europe, is something we will do now with vigor and full appreciation. Our holding line to fear is untethered. We are free for now.
I know we will never be the same. I know we will eventually start worrying about this coming back, as we know it can. But for now, remission is what we care about and fear has no place in our hearts at this time. We are so grateful to our doctors, our hospital and to all the medicine that got us to this point.
From this constant adapting will certainly come a new sense of awe and wonder in each sunrise and sunset. Life is not to be taken for granted…We now know this to be the truth.
I also know we will appreciate the magical parts of life like never before, like welcoming our new grandchild in less than two months, our first, with open arms full of love and hope for tomorrow.
P.S. As warned, ups and downs, and disappointing results are to be expected. It’s the nature of this journey. Seems that we are not done yet, sadly. The most recent PET Scan showed a slight uptick in size and quantity of “lit up” reactive nodes, so we now await another biopsy (large core, surgical) with the possibility of radiation therapy, if cancer is shown. We still have not had a clean PET scan since this journey began almost a year ago in November.
P.P.S. HOORAY, the surgical biopsy (bigger than the previous needle biopsy) showed that it was just scar tissue, not cancer, so we are able to plan our lives again, and take a breath after holding our breath for so long. Now we are really in remission. Off to see our grandbaby and head to Amsterdam to see a European city in bliss.