“The secret to health, both mind and body is not to mourn the past, not to worry about the future, but to live the present moment wisely and earnestly.” ~Gautama Buddha
We’ve all learned to live with the following words: “Not curable but treatable.” It is a staggering and inescapable truth softened by hope. We cannot cleanse ourselves of WM, but we can adapt to its shadowy presence. For me, this required a complete dive into the existential meaning of my life and path forward.
In my first Story of Hope five years ago, I detailed my life’s sudden derailment upon diagnosis —the utter panic, the grueling waiting game for diagnostic results, and the subsequent treatments. After treatment, I was rewarded with the acronym VGPR: Very Good Partial Response. To me, this meant the cancer clock had been favorably, if not completely, turned back. Active treatment was replaced by active surveillance. After three years, I may not have been cancer free, but I was free from visits to that damn infusion room. So began a special time in my life that I referred to as “intermission.” With a negative PET/CT scan and a barely detectable M-spike, I hoped for a very long intermission.
I had come to learn that many features and characteristics of my WM was not like that of many others with this disease. At its highest, my IgM level was only 733. Presenting labs were all within normal range and I was not experiencing fatigue. The bulky, lymphadenopathy and organ involvement I had was not typical for most with WM. I have a rare subset of WM called Extramedullary Disease, or EMD, which occurs when LPL cells form tumors outside the bone marrow in the soft tissues or organs of the body. If EMD occurs, it more often happens well after initial treatment for WM. At the Dana-Farber Cancer Institute, I learned I was Wild Type for two mutations: MYD88 and CXCR4. This did not bode well for a lengthy intermission or overall survival. Despite my initial “Very Good Partial Response” diagnosis, doubts loomed. I had become accustomed to these feelings, so I searched for balance and a clear perspective. Appropriately addressing my cancer worries seemed key to quality living. A lengthy intermission would be meaningless if I was bogged down by the tyranny of “what if.”
So I lived out my hopes, dreams, and joys. My husband and I traveled across North America in an RV, our senses captivated by nature’s beauty and the realization that the continuum of the world is much larger than ourselves. We created lasting memories and lasting truths on these fulfilling trips. Meanwhile, a total of 13 and a half years had passed since my diagnosis, with eight years of intermission!
We have continued living our best lives despite the uncertainty of the Covid pandemic. We are fully vaccinated and boosted and have continued safety protocols such as masking. Pandemic living never factored into my intermission focus, but, in some ways, it mirrored the sudden diagnosis of WM. Covid-19 required additional learning and adjusting to new circumstances. My husband and I prioritized attaining healthcare clinicians to transfer our care once we settled in our new home in Arizona.
While my lab numbers had remained stable, I was experiencing some mild GI symptoms. I decided to undergo a PET/CT scan because the mesentery of my small intestine had been so impacted by WM. These scans showed active enlarged nodal areas, though not nearly as large or extensive as they had been at diagnosis. The scans also revealed a new lesion in the manubrium portion of the sternum. Such news is never welcomed, but it’s also not surprising—my WM is progressing as it was certain to do. Thankfully, my GI symptoms, which turned out to be unrelated to WM, are gone, and I am free of WM-related symptoms or pain. Despite a more progressive state of WM, I can still spend the entire day working on my Arizona desert landscape. My husband calls it “taming the desert,” but I think it’s the other way around. My husband and I hope to travel to Europe, though a cancer check-up, the continued pandemic, and the raging war in Ukraine may alter our plans. I keep my daily focus by not dwelling on the past or letting anxiety consume thoughts of the future. Just reading the headlines shows me how fortunate I am compared to the plight of so many in the world.
My brother, after suffering a traumatic brain injury, offered perhaps the most influential message I’ve received since my cancer diagnosis. He said, “If all people’s problems were laid out on a table and we had a choice to pick from them we’d pick our own.” The plethora of WM treatments and clinical trials offers more hope than ever. I have learned to accommodate this incurable cancer. With years of lessons in cancer thriver-ship, I know flexibility remains a determinant. My goal was never to turn back the clock on WM, but to celebrate living between each stroke of the clock.
Wanda’s Original Story of Hope, February 2017
“I think I feel something,” murmured the nurse practitioner during a GI appointment. I was initially there to schedule a colonoscopy. Lying on the exam table I strained my head upward wondering if I could possibly see what she was feeling. “Let me get the doctor to check,” was her immediate response. Slowly, my doctor palpated my abdomen. Reassuringly, I heard her say “Oh, it’s probably just musculature.” But then she said, “No hurry, but it wouldn’t hurt for you to go in for an abdominal ultrasound to be sure.”
Believing this would be just a routine scan, for my next day off from work, I scheduled the ultrasound at the hospital where I worked as a RN. After completion of the procedure I went about other business I had planned for my day off. I returned home late evening to a phone message: “Wanda, call us back first thing in the morning. Have us interrupted if you have to.” And so IT all began.
I was 54, married for 25 years, and worked as a RN full time at a local hospital. My husband Jeff and I had just celebrated our anniversary the month before, enjoying a vacation at Acadia National Park in Maine. We loved vacationing in our National Parks where we could be active in the scenic outdoors. Despite chronic back issues originating from my early days as a nurse, I was healthy and fit. Unlike many diagnosed with WM, I had no inkling that something so serious was about to be discovered.
I went to work the following day, having stayed up most of the night wondering and worrying. After the night nurse gave me the report, I turned to a coworker and friend. I told her that at 9AM I had to make a call, and I asked that she be with me. I explained the message I had received. My expression of concern was evident. I made the call trying to remain calm. I listened to the findings of the ultrasound, writing down what I heard – specifically, “mass on the head of the pancreas.” My doctor’s office called in stat orders for an abdominal and pelvis CT scan, while I called another nurse to come in and work my shift.
As I drove to the diagnostic center my mind was racing and repeating “mass on head of pancreas” over and over again. How could this be? My nursing brain tried to summon up benign explanations but came up with none. In a disassociate state I filled out forms, drank the barium solution, and got through the scans.
Waiting for results during the days that followed, my mental state deteriorated. What began as shock and disbelief was now complete terror and panic. I was unable to sleep or eat. Coworkers said I was disappearing a little more each day. My always optimistic husband remained calm and reassuring, but my mind was plagued with doubt and worry.
Jeff accompanied me to hear the results of the CT scans. The news was mixed. What was presumed to be pancreatic cancer was appearing now as “probable lymphoma.” There were multiple large masses noted throughout the abdominal area. A CT-guided nodal biopsy was scheduled for the following week at the hospital to obtain a more conclusive diagnosis.
Describing this procedure and what went wrong during it is difficult for me to write even now, eight years later. The CT scan located the best area to access. After a numbing solution was applied, I watched as a scalpel cut into my abdomen forming a hole, into which a clipping device was inserted to excise a lymph node specimen. I was awake, without the benefit of sedation because one needs to cooperate by holding one’s breath during the moment of “clipping”. The pain was intense with each failed attempt to excise a nodal sample. With the last attempt my pancreas was nicked and began to bleed. Either from the pain or from the bleed, I went into shock and don’t remember much more. I was kept in the hospital until the bleeding stopped and a hematoma had formed, and underwent additional CT scans to confirm I was stable enough to go home. All of this brought me no closer to a diagnosis.
Soon after, my endoscopy/colonoscopy was performed. The findings were negative. But I still needed to be worked up for a “probable lymphoma” diagnosis. I was advised to see a hematologist/oncologist at a larger hospital. I lived close to NYC and thought Memorial Sloan Kettering would be my best option. But Sloan would not take my insurance. Closer by I was told Hackensack University Medical Center (HUMC) had a good oncology department. However, it was in NJ and out of my network. When I heard a world renowned lymphoma specialist was practicing at the John Theurer Cancer Center, a part of HUMC, I was determined to get in and see him. His credentials included practicing at both MD Anderson and Memorial Sloan Kettering. Through persistence bolstered by some begging and crying, I managed to get through the appeal process with my insurance company to cover the costs for this “out of network treatment.” Next up was to get an appointment with this specialist, Dr Andre Goy, whom I had read so much about.
I called on a Monday and was told Dr Goy generally saw his new patients within a week. The scheduler gave me an appointment for that Friday. With Jeff at my side we walked into an exam room and met Dr Goy. He kindly inquired about my history, reviewing all medical transcripts. Then came more lab work followed by the inevitable bone marrow biopsy.
As I waited for those results I continued with additional and repeat CT scans, a full body PET scan, and a brain MRI. I started to research lymphoma on my own. I suspected I had an indolent type, which implied incurable but somehow treatable. Even as a nurse, this concept of “treatable but not curable cancer” was unsettling. I envisioned a ticking time bomb inside of me. I doubted if I could go about the business of living my life without this knowledge consuming me.
Beyond the psychological stress over my health, my job now looked threatened. Rumors had started that my hospital specialty unit would be closing. As a point of reference, this was the end of 2008, and the U.S. economy was tanking. Hospitals downsizing or closing completely had already been making headlines. Psych units in particular were being closed at many hospitals. At age 54 I wondered where I would find a psych nursing position offering me immediate health insurance, while in the midst of cancer treatment – treatment I knew I could not afford on my own. Private insurance would be costly. And it might be denied because of this pre-existing condition, or be severely restricted to exclude cancer treatments. The struggle to treat an incurable cancer seemed more than enough to contend with, let alone also losing my income and healthcare insurance coverage.
At my next oncology appointment my results were delivered by a partner of Dr Goy’s. Bulky lymphoma, massive and extensive lymphadenopathy, was noted on the CT scan report throughout the neck, chest, abdomen, and pelvis. The PET scan indicated SUV (Standard Uptake Value) readings of 7.5, signifying a moderately high rate of activity in the nodal masses. The bone marrow specimen was determined to be lymphoplasmacytic lymphoma (LPL) with 40% infiltration. That, along with an IgM reading of 733 and my M-spike of 0.73, meant I qualified for a diagnosis of Waldenström’s macroglobulinemia. However, for a more complete diagnosis I would still need to undergo a surgical biopsy of enlarged nodes from my armpit.
The surgeon successfully excised several nodes that were thought to “favor” marginal zone lymphoma. These specimens were subsequently reviewed at Dana-Farber Cancer Institute and found to be LPL. Finally, after numerous tests, procedures, and a surgery, I had a diagnosis. It was reassuring to learn it was not pancreatic cancer. But what, I wondered, could I expect with this rare and incurable Walden fellow?
On my follow-up visit with Dr Goy he assured me WM was “treatable”, if not yet curable. He introduced me to a new term – “chemo lite” – as he described his treatment choice for me, which was to consist of Velcade along with Rituxan and Decadron. Treatment infusions would be given twice a week. This conflicted with my work schedule, but I was able to take “intermediate leave,” which meant I could work part-time during my treatment. The salary cut I calculated could be managed short term. More concerning, however, was learning about my “Lifetime Cap” for healthcare where I was employed.
At my next appointment with Dr Goy, I informed the nurse practitioner of my “cap” for treatment. He seemed familiar with this term, but offered nothing in the way of reassurance. He mumbled something like “that’s not much,” when I mentioned the cap amount. I started to keep track of all invoices from my insurance company, noting how much was being spent on my care. I had been at this job for four years, utilizing health care after I became eligible at six months of employment. The dollar amount I had used up was unknown to me. New insurance billing statements were pouring in almost daily. I was awed to realize how quickly I could reach my lifetime limit on health insurance. And still, at that point I hadn’t begun any treatment!
I finally started the Velcade, Decadron, and Rituxan combination therapy in January ’09. Soon after, my peripheral neuropathy worsened, causing a burning sensation in my lower legs. Dr Goy had warned me the PN might get worse before it got better. But I was finding it intolerable. Consequently, Dr Goy modified the dose and cut it back to once a week. I was in less discomfort after that, and finished treatment in June.
Soon after, the full complement of follow-up tests were done to assess the degree of my response to the therapy. To everyone’s dismay there was no improvement. The bulky disease was not budging. Velcade’s only effect was to cause continual fasciculations (muscle twitches) in my calves, which ultimately proved to be permanent. The other was to deplete my insurance lifetime cap further.
Goodbye Chemo-lite, Hello Chemo! In July 2009, I began a course of RCD – Rituxan, Cytoxan, and Decadron (RCD). This time I decided to go out on a full Family Medical Leave Act absence from work, and to apply for temporary disability. Financially, I was able to manage this for four cycles, but by the last two I needed to return to my position for fear of losing it. I had been informed that my unit was in fact closing, and that my employment fate could not be determined while I was on a medical leave.
The extreme fatigue from the combination of my treatment, my twelve- hour shifts, and the uncertainty of my job, was taking a grievous toll on all aspects of my life. After weeks of being told there was not a position in the hospital for me, I was informed I could choose between “bumping” a nurse with less seniority on another unit or be laid off from the hospital. I saw no way out except to take the job that was being offered to me.
The year 2009 was almost over. And while the country’s economic recovery still had a ways to go, I was hopeful that my recovery was near at hand. I had made it successfully through the six cycles of RCD, and was waiting anxiously for the results of the blood work, CT scans, PET scan, and bone marrow biopsy. To my total joy, I had remarkable results on all fronts. My bone marrow biopsy was negative for LPL; my M-spike was barely detectable; and most importantly those nodal masses had shrunk and were gone! WM was still with me, but it felt as if the ticking bomb inside me had just been reset. I still faced two years of maintenance Rituxan, and the likelihood of future treatments, but a hopeful path was beginning to appear possible.
Importantly, I no longer obsessed about using up the lifetime cap on my health insurance. 2010 would usher in the Affordable Care Act’s (ACA) elimination of these lifetime caps. The pre-existing condition exclusion also had been eliminated. It was an immense relief to know I would not lose healthcare coverage. A disease that had hit so hard emotionally, physically, socially, and financially now felt within the realm of managing.
WM can certainly be a wily opponent with an unpredictable course. For Jeff and me, it was our wake-up call to evaluate what was important to us going forward. Our time spent together became a priority. We opted to pursue a way towards an earlier retirement than we initially had planned. While I seemed none the worse from my chemo treatments, my spinal stenosis had worsened, and so did the neuropathy. I could not envision another ten years of working as a nurse. With two knee surgeries, a hip replacement, and another one expected, I eagerly awaited my 62nd birthday – July 22, 2016 – which also would be my retirement date. Our plans included going on COBRA health insurance, followed by one of the plans offered by the ACA, until we were Medicare eligible.
Jeff summarized our new life’s strategy this way: “We must be willing to get rid of the life we’ve planned so as to have the life that is waiting for us.” With that as our vision, we began re-crafting a more cost-efficient and simpler life. Ultimately, we settled on a plan to travel North America and visit its magnificent park system while living full time in a RV. As we continued to work and save, we also began the difficult task of letting go of a lifetime of possessions. I started reading articles about minimalism. “Trash, transfer, or, treasure” became our mantra for all our worldly goods. Resiliency had gotten us this far; we determined now to focus on becoming masters of the values that made us happy. Living a more authentic life – despite but also because of WM – now seemed possible.
An RV that met our needs finally was purchased. Jeff’s small business sold. And lastly the house sold. Timing was critical, with so many balls in the air, but somehow it all came together. On September 1, 2016 we and our two cats were on our way. There was a moment of utter shock when I thought, “we’re homeless!” But Jeff’s reply, “no, we’re home free,” felt truly liberating.
And liberating it has been! I know people who plan the kind of trips that we’ve already been on as yearly events. And here we are living modestly, but with the thrill and excitement of travel full-time. We’ve welcomed each day with gratitude while still feeling surprised that this all came together. We plan to travel back to New York next autumn to see family, friends, and of course our doctors, for what we hope will be stable reports for us both. We definitely want to continue with our road trip lifestyle while in stable health.
Unfortunately though, our COBRA insurance ends this year. The uncertainty and vulnerability of access to affordable healthcare insurance has resurfaced. Time will tell what insurance costs will look like for myself and others. But in the meantime, l do my best to stay informed, to be involved in advocacy groups, and to take life one day at a time. It’s a strategy that living with WM has taught us exceptionally well.
In addition, my WM experience has taught me the enduring lesson of gratitude. Acts of kindness offered to me have evoked strong feelings of humility. I understand the importance of not going it alone. Since joining the IWMF I feel a deep sense of commitment towards a mutual struggle and common goal. Thanks to the IWMF, its volunteers and members, I have never felt alone.
Finding support wherever it can be located has immeasurable benefits. As for myself, I was extremely fortunate to have that support right at home with my loving and devoted husband, Jeff. His modest claim that he was “just the driver” to all my doctor visits, procedures, tests, and treatments barely begins to tell the story of how he kept me afloat. To him I owe a life that is more worth living than I ever imagined it would be.
Somewhere on the Road in North America