When Is Progress a Bad Thing?

Disease Progression. 

Two little words, never used before, have insidiously snuck into my doctor’s vernacular. My chemotherapy ended twenty months ago and the deep response was something to celebrate. We had gotten terrific results and I felt liberated, each day a new lease on life. But now I seem to recall a bit of caution in my doctor’s eyes, an unspoken hesitancy to fall into complete joy, a holding back and a holding on. From years of cancer care experience, my medical team knows firsthand that there is always another shoe that can drop, even when you are barefoot, footloose and fancy free.

This last visit felt different. Pulling up to the cancer center, I sensed a tiny, palpable, sinking feeling that things inside this old body of mine were shifting. I cannot pinpoint the exact reasons why I feel this premonition – maybe from the way my body carries a hint of fatigue; maybe a creeping bit of crankiness in the late afternoons, when the sunlight wanes; maybe that bout of pneumonia that landed me in the hospital last month – something is telling me that the waters ahead may be darkening. I know it inside but I do not utter a word aloud.

For the first time I tell my doctor that if my numbers have changed and the trajectory is less than ideal, I will be okay. I will not be upset. I will move ahead and deal with it. I do not know why I say this — it is as if I am reassuring him. Looking at his sweet smile and starched white coat, I want him to know everything will be okay, even if it will not. He looks at me with deep, kind, understanding eyes. We have to wait a few days for the most critical numbers to return from the lab but he will be in touch. The lab results arrive in my inbox and I click to enter that alternate universe of the patient portal, sitting alone, peering at the numbers leaping off the screen, holding my breath, frozen for a moment. 

Before panicking, I shoot a message to my beloved physician stating the following: “Hey Doc! Latest blood work shows my numbers are going up. Does this news deserve an “uh oh!” or a “shoulder shrug” response…. or something in between?” His reply states that the numbers are “obviously concerning for disease progression” but do not require any immediate action or cause for alarm. I could have “months to years” before I will need to begin my second course of treatment, he explained. I read my doctors’ note about that visit carefully, analyzing every turn of phrase and decoding every comma:

“Her IgM level has increased, concerning for progressive disease.… There could be a gap of months to years between meeting criteria for progression and meeting criteria to be treated. Therefore, a watchful waiting approach is appropriate.”

In that one instant, a cosmic shift occurred in my own world – a shift that no one else can see. I had gotten used to my new identity as a cancer survivor who had endured a successful round of treatment and was now busy getting on with life. I was relishing each day with renewed appreciation and a newfound promise to focus on what is most important to me, leaving the rest behind as unwanted residue. In a spinning second, I transformed into a cancer patient that will now be closely watched as we determine exactly when the next treatment will begin. Not “IF” but “WHEN”. It may be months – or even year(s) if I am lucky? – but gone is the fantasy that I would live for a time feeling the intoxicating liberation of my disease being “progression free”. 

I fought it back once, but this new reality brusquely reminds me that my disease is still there, alive and well, slowly and ploddingly gaining strength, recruiting foot soldiers one cell at a time, waiting to strike, looking to wreak havoc. It is just under the surface, lying low for now, but when I listen closely in the wee hours of the night, I can almost hear it breathing.

Everything has changed because now I feel like I have an hourglass of time sitting on my dashboard as I drive through each day, reminding me that sand moves too quickly and this road trip is finite. Cautioning me that I better choose well at every turn in the road. But in truth, nothing has really changed. Every cancer patient knows that life holds no guarantees, that this disease is sly and relentless and that the threat of recurrence is always in the cards. The trick is to learn how to live fully in the moments between – the moments of deep connection and honest truths and unbounded love – the priceless, profound moments that we experience in spite of, or because of, our disease’s presence. In this new liminal state – hanging in limbo between one treatment ending and the next one beginning – I am reminded, once again, that life is more precious than words can express and my love for my family is more profound than my heart can even hold. So we wait, with the knowledge that we will have to fight another battle. We do not know exactly when, but we definitely know how. For we have faced this giant before. After all, this is not our first rodeo.

Lisa lives in the suburbs of Philadelphia with her husband of 28 years and is the proud Mom of twenty-one-year-old  fraternal twin  sons. As one of her sons carries the diagnoses of Crouzon Syndrome and Hydrocephalous, their family has learned how to manage life with multiple complex chronic lifelong conditions. Born into a cancer-cluster family, Lisa has navigated through the palliative care journey with three of her immediate family members. She uses the invaluable lessons that she gained from those pivotal experiences to inform, shape and guide her professional work of 20 years as a family and patient-centered healthcare specialist.  Drawing upon her personal journey as a cancer patient over the past eight years, Lisa benefits from the wisdom and strength of others as she leads the Eastern Pennsylvania support group and is a Trustee of the International Waldentrom’s Macroglobulinemia Foundation. Since 2013, Lisa has been a dedicated student at the Penn Program for Mindfulness. In an attempt to catch her breath, Lisa delights in visiting the ocean, listening to blues guitar, finding healing humor in every day life, and practicing mindfulness meditation. Regular doses of high quality dark chocolate help as well.