Stories of Hope

Keith, Follicular Lymphoma

Keith, Follicular Lymphoma

My family doctor assured me that the large, squishy lump in my armpit was not consistent with a tumor, so I wasn’t anxious about the results of the biopsy done one week before. On Monday, April 14, 2008, I entered the exam room of the general surgeon that had done my biopsy. Rather than tell me the biopsy results he simply handed me a one-page printout.

I glanced over the report. “Right axillary adenopathy … atypical lymphoid infiltrate … combined morphologic and immunohistochemical…” I thought, “What is this gibberish?”

I looked at the doctor and asked, “Is follicular lymphoma a cancer?” He nodded, and said, “Yes.” Whoosh! In that moment my heartbeat skipped, and my stomach seemed in a free-fall. Cancer? How can that be? This can’t be possible. The doctor continued staring at me. No words.

As I broke the silence and began asking questions the general surgeon explained that I had follicular lymphoma, a form of non-Hodgkin lymphoma, a blood cancer, and that there was no cure. He detailed several facts, and then said, “You’re 47 and really quite lucky.” At that moment, I was thinking about this death sentence I had just received and my dashed visions of my home bustling with my children (as parents of their own) and future grandchildren. Lucky? What was he thinking?

14 years later, I still wonder about the poor communication skills of that general surgeon, and the repeated denial of the possibility of having cancer by my family doctor, but I do understand what the surgeon meant about me being lucky.

Over time, I learned of the typical, slow-growing (indolent) nature of follicular lymphoma, and the numerous medical treatments in-development for this common blood cancer. As I met many other cancer patients through my patient-volunteer activities, I unfortunately witnessed a number of those with less-treatable blood cancers relapse and pass away. I was lucky to have a less severe cancer, and a strong, healthy foundation due to my age, diet, exercise, family support, and ready access to affordable healthcare through my employee medical insurance.

My initial treatment was 8 chemotherapy rounds with 4 drugs, Rituximab, Cytoxan, Vincristine and Prednisone (R-CVP), to shrink the many tumors initially identified in the CT, PET and MRI scans. This treatment left me with peripheral neuropathy (pins/needles/numbness in my hands and feet) that diminished in severity over time but has not gone away more than a decade later.

My initial tumors also caused nerve damage that left me with chronic pain at several original tumor sites. Fortunately, after 2 years of trial and error with a dozen prescription medications, my neurologist identified an anti-seizure drug, Carbamazepine, that has been a life-changing savior for my chronic pain. I must carry the Carbamazepine pills with me everywhere, as the pain intensity can vary unpredictably, and the medicine is only effective for a few hours. Nonetheless, the medicine is non-narcotic, and at my normal usage levels has limited side effects. I have gratitude to medical sciences not only for my cancer treatments, but also for the ability to control the frequent nerve damage pain with non-narcotic pills.

After 4 months of R-CVP treatment, many of my tumors were eliminated, but several smaller tumors remained. Subsequently, I went through multiple infusions of the monoclonal antibody drug Rituximab spread over 2 years as part of a “maintenance” program.

At that point, I followed an annual watchful-waiting regimen that showed a slow progressive growth in my tumors measured by CT (computed tomography) x-ray scans. Finally, after 7 years my largest tumors had grown to a size of some concern and I had noticeable fatigue. A biopsy of the largest, active tumor was done by laparoscopic surgery. The tumor was involved with my intestine to enough extent that a portion of my intestine was also removed along with the tumor. Unfortunately, surgical complications left me in the hospital for a week before I could return home.

My anxiety was that the biopsy would show transformation to a more aggressive, less treatable lymphoma, but the test results still indicated my cancer as the “lucky” follicular lymphoma. Phew! Big relief, and I entered new chemotherapy treatment feeling confident.

By this time, the standard-of-care for follicular lymphoma had changed, and I went through a chemotherapy series of Bendamustine and Rituximab. I tolerated these drugs better than R-CVP, as expected, but my veins seemed to have never recovered from the Bendamustine. Since my B&R chemotherapy 5 years ago, successful insertion of catheters for blood testing and infusions has been extremely challenging; often taking up to an hour and requiring multiple attempts to get a cooperative vein. Repeated needle stabbings/probing are never fun for anyone but I have a phobia over needles (trypanophobia) and sometimes have a vasovagal response where I pass out – always lots of excitement from the nursing staff over my motionless, sweating body (blood pressure at 67/24, etc.). I joke to friends that it’s fortunate that when I faint I’m always doing so in the presence of attentive medical staff since they are the ones with the needles that drive my fear!

Thankfully, for the last 5 years the tumor growth has been slow, and watchful-waiting is my only “treatment.” I remain active, take long bike rides on the weekend up and down the nearby coastal mountain roads, and continue to work full-time without any compromise needed to accommodate my indolent cancer.

Having lived with blood cancer for 14 years, I’ve had many thoughts about dying. It comes with the territory for an incurable cancer. I’m now calmer and more accepting of the possibility of a shortened life. An important part of that is my family. Since my diagnosis, my 3 kids have graduated from high school and college, married loving, thoughtful, spouses, and each now have children. Not only are my 4 grandkids a joy, but my children are wonderful, sensitive parents, and are always supportive of their dad. And yes, there is some bustling of kids and grandkids at my house!